The Brighter Side!

Running on Empty

2012-03-04T16:49:00.006-05:00

You know me by now, I'm a stickler for detail.... and since I was having trouble figuring out what the Bright Side was in this crazy whacky way I have been feeling, well, I thought I'd better wait. Sometimes important "ah-ha" moments come from the most unexpected things... in fact my guess is that they usually do!

My son was competing out of town in a FIRST Robotics competition yesterday and our normal practice is to drive down and cheer him on when they are competing in Philadelphia. I had been feeling pretty ill for the last week, but oh, how I wanted to go. I was so frustrated, and emotional! It's his last year and I don't want to miss a minute of this activity that he cherishes so much. Because he cherishes it, I cherish it. But yesterday came and I was still very low on energy, high on other symptoms, and we decided to stay home. Luckily the meet was shown on a live streaming video so we didn't really miss a minute of the action, and I took lots of pictures crazy woman that I am! There I sat with my camera, snapping images on the computer and uploading them to facebook for family and friends to see. We all cheered them on.

I was very excited, though... and when my enthusiasm reached a literally fevered pitch my husband, in a quiet voice filled with "I bet I'm going to regret saying this", whispered to me "relax". I deflated instantly, stunned and quiet and angry. Why? Why should I relax? This is fun for me. This is my child and this is what I do... I root him on, even if I am over 100 miles away! But I knew deep down that he was right in saying so... I took myself to another room and sat, stewing in my juices as they say! However, as I stopped and quieted I also I took a moment to check my body. My face was red and hot. My muscles ached. My heart was POUNDING... in fact I could feel my pulse in every square inch of my body. It was then that I realized that, for me, it doesn't matter where the excitement comes from... right now I just can't tolerate excitement. Right now I just can't be exposed to anything that makes me TOO stimulated, be it happy OR sad.

The rest of the day was spent in efforts to remain quiet and calm. I read. I played word games online, and I watched the remainder of the meets... all with a very serious intention to be calm. It was hard, so hard. I am not a calm person by nature. I am excitable, passionate, and vigorous about what I believe in and enjoy. Now I found myself having to pretend I was sedated... really. That was the only way I could think my way out of the frenzy.

I'll be honest with you, I got pretty pissy about it at first. Not outwardly. Outwardly I was just weirdly quiet, but on the inside I was angry and feeling spiteful, wondering why MY good time had to be ruined!!! Wondering why WE couldn't be screaming on the bleachers with the rest of the families (yes, we Robot fans can get pretty rowdy)! Why is it MY fault that I am exhausted, depleted, in pain and so sad!!! I shouldn't have to give this up!! WHY ME? WHY ME!? Oh it was a fabulous pity party! I filled the room with ugly balloons and icky streamers and brooded for a while....

Then I realized that I don't HAVE to give that up, but if I want to give my self a fighting chance, I would give that up. Boom. It really IS what it is, isn't it? I can certainly drag my body around, but there are consequences for unwise actions!

So here is the bright side in all of this:

1.) I was able to stop and pay attention to my body

2.) I was able to see first hand that stress is stress, happy or sad, and it depletes me

3.) I was able to become aware of an internal "meter" that tells me quite plainly that when I feel myself going "UP UP UP" like that I am really going "DOWN DOWN DOWN" ... I am running on empty. When my heart is pounding, my face is red, and I hurt from head to toe I suppose it has already gone too far and I had better apply the breaks this time, and commit to not going there again.

I think what I have been experiencing without realizing is a kind of adrenal distress and it's time I listened to my body on this. I say that because the universe, being gracious as always, has sent me many clues this week. Oh sure, it probably knew I wasn't fully ready to 'get it' but it sent them none the less. It's always that way with me... I tuck things away because I feel their importance, even when I don't "get it" yet.... and then all of a sudden something happens to bring them BACK to the front of my mind with a huge "AH! So THAT'S what that meant!" To say that I heard the word "ADRENALS" a couple of times over the last two weeks would be a vast understatement.... which should have been my first clue. Whenever something comes up THAT many times, whether I get it or not, it always turns out to be very important.

So, let's review: When the meter goes UP the tank is dry. My goal is to not let it get that far... to practice being calm in all things that come my way. I am so not good at this... I am SO not cut out for calm, but I sure am being cut down by stress and so if I want to give my body a fighting chance, the medicines and herbs and supplements a good team environment in which to work, then I am going to have to keep the meter running... running in the middle on nice solid ground. I'm not sure HOW I will do this, but the BRIGHT SIDE of this struggle is that if I give my body the kind of rest it needs it will be able to restore itself.

AND... I am so grateful for my husband who pushes through that "I am probably going to regret saying this" feeling and says it anyway.

So, you see, there is ALWAYS a Brighter Side when you're Living With Lyme!

~blessings!

donna }I{

P.S. He has another meet in New Jersey next week. I'm staying open to the possibility that we may not be able to make the trip either, am forgiving myself in advance, but will also work hard on learning how to maintain a calm INTERIOR to preserve my strength. Life gives me lots of opportunities to practice staying calm, thank goodness. Playing it by ear. Lyme is so weird and next week is light years away.

RERUN! Because Spring is coming...

2012-03-01T08:27:00.001-05:00

I wanted to rerun an old post today for a two reasons....

One is simply because, though I know all wisdom says I should live in the present, I am finding myself to be so so cold all the time, and so longing for the warmth of the sun. My hope is that by the time the sun beats warm on our area I will be off of tetracyclines and replacing them with natural medicines, relieving me of my worries about photosensitivity which has kept me indoors and leaving me only to manage my fear of ticks. ONLY? That's funny. One thing at a time though. Spring always comes and I need to remind myself that pretty soon my butterfly bush will be bursting with purple blooms and home to many winged guests! I need this, and I look forward to it.

The other reason is because my body feels so broken down these days and these images remind me of inner strength that works miracles. It really isn't the wings, as these beauties taught me... it's the flight! I know my wings are healing as I write this, but I wanted to remind myself that I am still capable of surprising things... even on tattered wings.

~blessings!

donna }I{

I have been wanting to share my photos of butterflies with you ever since my post from a few weeks back titled Flashing Back and Fast Forwarding. The images were taken during the summer of 2010. I learned something interesting about butterflies that year... their winged bodies are in much different shape by the end of summer than they are in the beginning of summer. I never would have noticed had it not been for modern technology and the ability it affords me to really look closely at my photographs. I can take any series of images, and while my face is still warm from the sunshine, I can put them into my computer, enlarge them, and see what was REALLY there! I never would have thought these beautiful creatures were so "broken" in form. They flew as if nothing had happened... as if they weren't missing a good deal of their wing. It made me think that there are, perhaps, many ways to "fly" as a person. It made me think that my life probably holds more potential than I ever dared to trust.... It made me realize that it's not the wings that matter most... it's the flight. Here are the images that I was able to find so far. I hope you like them.

blessings!

donna }I{

"YOP!" (a message from my body)

2012-02-28T09:21:00.001-05:00

I am beyond tired.

The dog announces the mailman with his daily round of barking that makes me wonder what the mailman ever did to him. Good to be a whole floor away where I was able to hear him but NOT jump out of my skin.

So, I supposed I could spend the day trying to wonder why I feel like this. Would it matter? I'm not even sure I would be right so would it be even a good use of my limited energy? It seems I no sooner got the words out of my mouth to my neurologist, happily reporting that I hardly ever nap these days when suddenly I have required one if not two naps a day since last Tuesday. The irony is also not lost on me. It's a feeling of physical dissolving, if there is such a thing. The only way I can describe it is to say I feel like I am evaporating. Back in the months just prior to my diagnosis of these multiple tick borne illnesses I used to say that I felt like a chalk drawing on the pavement... a chalk drawing in the rain. Pretty soon no one will ever know I was there as the colors dribble down the crevices and into the drain on the side of the road. What I have learned since then is to remind myself that these feelings, as everything else, are temporary and that just because I FEEL a certain way doesn't mean I AM a certain way. I'm not washing away. I'm not leaving this Earth any time soon. It's just the only way I can describe this feeling of fading. I feel numb spots here and there in my body, my face is off and on tingling, and my body feels like a heavy heavy stone. Today will be a resting day... a don't fight it roll with it ride the wave day. Maybe I'll write a little or try to organize my book project a bit. Maybe I'll find a movie on Netflix. Maybe I'll listen to music. Maybe I'll look at some old photos. Anything that supports my stillness is what I will do today. The only housework I will attempt is to finish a bit of laundry... at least get it into the dryer and ask one of my sons to take it from there later.

Some days are like this with Lyme Disease. Remember little Jo Jo playing with his yo yo in the Dr. Seuss classic "Horton Hears a Who"? Remember how all over town Whos were screaming to be heard... but it wasn't enough. Finally someone found a very quiet little Jo Jo and convinced him to join in. Until he contributed his tiniest little "YOP!" to the rising voices they could not be heard! I guess my body is just saying "YOP".

Announcement: Katina Makris Interview

2012-02-26T18:43:00.001-05:00

Katina Makris, author of Out of the Woods: Healing Lyme Disease Body, Mind, and Spirit will be interviewed on internet radio tomorrow, February 27, 1pm EST. To find the show follow this link:

The Light Within presents "Body Betrayal- a Healer's Story of Recovery From Lyme Disease.

"Katina Makris, classical homeopath, intuitive healer and author of the award nominated book, "Out of The Woods; Healing Lyme Disease, Body, Mind and Spirit" had been a practitioner for many years when she found herself struggling with severe misdiagnosed Lyme disease. Her 10 year journey of recovery led her into the realm of metaphysics and redirected her approach to healing. Defying the odds for recovery she emerged with a skill set in healing and a treasure trove of understandings about the stunning resilience of the human spirit."

Out of the Woods has been discussed on The Brighter Side blog in a BOOK REVIEW as well as the story

"A Trail of Breadcrumbs"

Tune in to The Light Within and let's listen to Katina together! Looking forward to it!

A Trail of Breadcrumbs

2012-02-23T10:03:00.001-05:00

I recently told you about my thoughts on the wonderful book "Out of the Woods; Healing Lyme Disease-Body, Mind, and Spirit" by Katina Makris. Ever since reading her book I find myself using the metaphor of the woods more and more because it fits so perfectly with how I feel about this journey. One thing that crossed my mind yesterday as I was once again trying to devise a simple way to remember something that was important to me I noticed a shift had occurred. Instead of feeling ANGRY at my inability to remember, raging against my illness, and consequently making everything worse by raising my own stress levels I was feeling calm, easy, and quite pleased with myself. I told myself "I am laying down a trail of breadcrumbs so that I can have some help finding my way out of the woods".

Laying down breadcrumbs! What an act of self care, come to think of it! I was trying to think of a way to display the basic framework for Katina's "intentions exercise" from Out of the Woods, appendix A. There are three fill in the blanks sentences and I was having a real hard time holding on to them. The are "I will be ______". "I am _____". "I will _____". No sooner did I read them than they POOF disappeared from my memory.

If you have been following here on The Brighter Side blog you probably saw my piece "Untangled by Zentangles!" a few weeks ago. My mind immediately went to this new hobby and I created a new Zentangle Mandala to help me remember the three statements. The act of creating it will help me reconstruct the exercise in my mind, and the finished piece can go on my meditation table where I sit every morning and try to find peace within this slipper bar of soap I call my mind. Here is what I designed:

There are many "breadcrumbs" I lay down to help me in this journey... to help me find my way OUT of the Woods! For example, I use my ipod to record all calendar appointments because I can set alerts leading up to the appointment- I always need more than one reminder and this provides me with two. I use glass writer markers on my bedroom mirror to write important ideas or practices that I want to be aware of every single day. I use two different pill boxes strategically located so that I can have a better chance of remembering my medication schedule. I send myself emails when I know I have to do something and don't want to forget. I save emails as "unread" to remind myself to go back and attend to them. I touch base with people who can remind me of the things I have learned along the way because they tend to slip away ... I need refreshers, and that's okay. Don't look now, but I think I'm learning to be more gentle with myself! Ah... yet another gift of Lyme Disease.

It takes a LOT of bread crumbs to navigate the twisting trail!

Book Review: Out of the Woods by Katina Makris

2012-02-19T16:52:00.008-05:00

Out of the Woods; Healing Lyme Disease- Body, Mind, and Spirit is a very personal telling of a painful, joyful, difficult, and life changing journey through the deep dark forest of Lyme Disease. The author, Katina Makris, is one of the many in this country who found herself experiencing a devastating illness that no one could seem to name for her, and those who tried were well meaning but incorrect. That is, however, until she found a doctor who recognized Lyme disease and was able to help her turn her declining health around. Out of the Woods tells her story from the appearance of the first symptom through the restoration of health.

Once a busy and successful Homeopathic Healer the author suddenly found herself living much of her life from the sofa or bed. Katina, like so many of us, spent years watching the unnamed illness take pieces from her life as she tried to raise children, preserve her marriage, salvage a career, and hold onto confidence in her ability to heal body, mind, and spirit. This is not only her story, but the story of so many who have battled through the pain and anguish of misdiagnosis, unsuccessful treatments, personal loss, professional devastation, financial ruin, and held on tightly to a relentless refusal to give up!

As I read the opening chapters of Katina's story I was taken aback at how many similarities I saw between her experience and my own. Experiences that came early on in my illness but decades before my diagnosis fell into place, finally. I found it such a healing experience to realize that I am not alone... that I never have been. None of us are. We truly are all in this together, at different locations in the same woods. I like to think of it that way... we are all in the woods together, even if it seems dark some days. It helps me to remember that there is always someone not too far from my reach. Katina shares her deeply spiritual journey as well, giving detailed accounts of her studies to become an Intuitive Healer.

You will read about the variety of treatments used, and you will also discover that there is no judgment here. I'm sure many of you have experienced the feelings of frustration, fear, sabotage, and even shame when confronted by the "finger waggers". By "finger waggers" I mean the people who lecture you about all the things you are doing wrong... the ones who will tell you "NO one gets better without ANTIBIOTICS... Natural medicines don't work!" or "YOU are KILLING YOURSELF by taking those antibiotics... you must follow a natural approach." This author doesn't do that. Katina Makris holds every Lyme patient in very high regard and I predict that you will feel respected and honored as she discusses the various treatment options. I feel compelled to share this with you because I have had some very bad experiences with "finger waggers", in fact my son's treatment was in serious jeopardy for a while because of HIS encounters with them. I will admit that I felt a bit nervous reading the book (gun shy?), knowing that a natural approach was used and wondering how and when the wagging against my antibiotics would commence, but it did NOT. My judgment was premature and WRONG. I cried, to tell you the truth. If you have had these experiences you no doubt know what I mean. Please don't hesitate to read this book if you have the same concerns. I was so pleasantly surprised.

This thing called Lyme Disease is like no other, and because it can be so damaging to the body, mind, and spirit it is very important that we give attention to all three... to our whole self. To heal from the physical and neurological impact of Lyme, the social stigma of an unaccepted medical condition, the psychiatric effects of the disease, and the spiritual fatigue that can arise from this very strenuous journey one must find ways to nourish the body, the mind, and the soul. Katina Makris shares with us how she found her way and why she focused on the whole self in her healing.

I strongly recommend this book to you. Please take note: if you are one of those folks who, like me, tends to ignore the additions that can appear AFTER the story line ends, I want to encourage you to change your ways and read all the way to the end! Part Two is called "Nuts and Bolts of Lyme Disease", and contains a wealth of information! Please don't ignore it like I almost did! From signs and symptoms to metaphysical significance of Lyme I'm sure you will find many tidbits and insights that will enrich your own lives as you make your way Out of the Woods.

~blessings!

donna }I{

Thoughts on "Being Home"

2012-02-07T11:00:00.001-05:00

Finding My Soul

June 22, 2008

As I stand on the peak

Between separate and whole

I am losing my mind

And I'm finding my soul.

I've been thinking about my journey lately... remembering how healthy I used to be. Remembering how sick I used to be. Wondering where I stand now in the continuum between the two and realizing that defining where I am is not nearly as important as being where I am. My life has changed dramatically since Lyme Disease reared it's virulent head, bringing it's partners babesia, bartonella, and erlichia along to see the job was complete. A poem that I wrote a few years ago popped into my head today and I had to look up that date; it was written around the time I found a doctor willing to send my blood work to Igenex, just a month before my diagnosis of Lyme came to validate and stun me. That is exactly where I was standing - on the peak between separate and whole. It was a pretty frightening place to be and I can only describe it as standing on the tip of a mountain peak, knowing that I will fall, and wondering which way it would be? I couldn't hold on to my version of my self any longer... something beyond my control was in control. I realize that, if not for Lyme Disease and all that has happened in the last 4 years I would be much farther from finding my soul. This incredible challenge has been gradually bringing me home, back to myself, which is where I want to be. The deepest truth I have learned but cannot explain? That we carry our home with us, always... 'being' home is more to do with consciousness than location.

I'm not glad that I'm sick... don't get me wrong. BUT, I can honestly say that I wouldnt' trade the last 4 years in for 4 years of the way things were. I kind of like who I am, and I sure couldn't have said THAT before!

That's all I wanted to say today.... just feeling kind of reflective.

blessings!

donna }I{

Untangled by Zentangles!

2012-02-03T18:32:00.004-05:00

Just the other day my husband and I pulled into the driveway and noticed a large-ish flat and familiar box from Amazon.com peeking out of the mailbox. "Old lyme brain strikes again" I thought to myself... "I know I was THINKING about ordering a book, but gosh I didn't think I had. I wonder HOW MANY TIMES I ordered it?!" Ah, nothing surprises me anymore! So we took the box in with our mail laughing as I explained what I must have done. When I opened it I found such a lovely surprise. This was a gift from my sister with a little note inside "I thought that you would like this because I know you like Manadals. I love the regular Zentangles." The book was called Zen Mandalas -

I called her to thank her and she told me a little bit about her latest passion for something called Zentangles. Her description, and what I was seeing as I flipped through the pages, reminded me of a type of doodling I used to do as a child, only much more detailed. I used to love working in a large space, dividing it up into sections, and then coloring each one different, stained glass style. My only rule was that the same color could not touch another space of the same color. And now here I was, many many years later, being invited to doodle again! How could I resist?

At first I was quite unsure about what I was doing, but what little text there is on the pages spoke of how these sorts of designs tend to create themselves... take on a life of their own. As with anything in life, simply the act of STARTING is the most important one. So, I started and here is my first design in black and white and then colored:

I loved it so much I had to try it again today and here is the result:

I am telling you all of that so that I can tell you THIS. Zentangles helped untangle me. It might help to tell you that in the short 7 days prior to receiving this unique and special surprise in the mail we had several other surprises! One was spectacular news - our youngest son was accepted into his college of choice (a wonderful, albeit very EXPENSIVE school up in New York State). In addition, our furnace malfunctioned and needed to be completely taken apart and put back together again. My car was in "ICU" with serious engine trouble caught just in the nick of time (and with a hefty price tag). My husband's car was taken to the dealer the day after mine came HOME with a very serious malfunction... the kind that leaves you thanking the almighty for the good fortune of perfect timing as the car decelerated without warning on a 4 lane highway. Oh, and I needed new glasses. All of these surprises have had me a bit tangled up in money fear. Worrying about all of these expenses was costing me sleep and flaring my symptoms (and let's not mention the little romp down "GUILTY LANE" that I was taking for having had to leave my career nearly three years ago and spend so much money on treatment, and thinking "OH how we could have used all that money to help with all this!) ... and then, from out of nowhere, this little gift from my sister.

When you begin to work on a Zen Mandala you really have no idea where it will lead you or what it will look like in the end. It's the perfect metaphor for life. You start with a circle, which is the only predictable thing there is! In working the piece I realized that the more I just relaxed and followed my instincts about where to place a line, a dot, a circle, an angle the easier it became to place them. The less I worried about which color is the next best color the easier it became to choose them. Sometimes I noticed that I took a wrong turn, but since I was working with ink that turn was there to stay... but no matter... it became part of the design, gracefully influencing the next step. I found it quite relaxing and meditative. All of these lines and colors and choices became the perfect metaphor for my life. So symbolic for me - to realize that one next step might just be as good as another - the point is to take the step and then take the next step. Perhaps being relaxed, and practicing presence here on the page, allowed the designs to emerge beautifully and with ease.

And, that's how Zentangles UNtangled me. What a lovely and perfect surprise!

Blessings!

donna }I{

The Therapeutic Value of Laundry Soap!

2012-01-15T07:44:00.006-05:00

Homemade Laundry Soap

Being unable to rejoin the workforce has been a challenge to our budget, and in my quest for affordable ways to meet my family's needs I came across a video posted by a dear friend on facebook (thank you Michele!) that described the process for making laundry detergent. Wow... I had never even considered the idea that one could do this from home! It seemed simple enough, and VERY inexpensive. She tried it first and she loved it, so I decided to give it a whirl! I have discovered that I really enjoy this little project, too. It's kind of therapeutic, actually, and I like it for a lot of reasons.... not just because of the money I am saving, and not just because I have control over the ingredients, but mostly because it's fun! I love the smells, and the sounds of the stirring and pouring... I love the feel of the soap in my hands... I love the fact that I can manage it, and I guess I love it because it's unusual and not a lot of people can say they make their own laundry soap! I wanted to share the recipe with you. If you google "Making Laundry Detergent" you will find MANY recipes, tips,and tricks, but they are all basically about the same as this. All of the recipes I have seen make 5 gallons of detergent, but I have cut it all in half for two reasons. ONE is that I can't really lift 5 gallons without hurting myself. Another is that I don't have room to store 5 gallons of anything!

From start to finish the process only takes about a half a hour. If you are having trouble standing some of these steps can be done while sitting at the table. It is recommended that you use equipment dedicated to soap making.

Ingredients you will need:
1/2 C Arm and Hammer Super Washing Soda
1/2 C 20 Mule Team Borax (laundry booster)
1/2 bar of any soap (Fels Naptha is made for laundry, but any bar soap will work)
2.25 Gallons of water

Equipment:

Medium sized sauce pan
Long handled spoon or stirring stick
2 1/2 Gallon Bucket
Funnel
Ladle or Scoop (I like a 2 cup measuring cup with handle)
Measuring cups
Grater or sharp knife for grating soap
Containers for storage. I use gallon jugs for storage. I transfer some detergent to a smaller, easier to manage recycled detergent bottle for regular use. It's just lighter that way.

Remove about one quart of water from 2.25 gallons and place in sauce pan
Fill bucket with remaining water (I set my bucket right in the sink until the whole process is complete... all spills and splashes go down the drain!)

To bucket add 1/2 c of each 20 Mule Team Borax and Arm and Hammer Super Washing Soda
Stir until fully dissolved
Grate 1/2 bar of soap and add to saucepan, heating over low-medium heat until melted. Do not boil. Heat water with soap until completely melted.
Carefully add melted soap mixture to bucket and stir until combined. It will become thicker (like thick gravy), but pourable. Different soaps will impact thickness, so play around.
Place funnel in your storage container and using your ladle/scoop transfer soap to bottle. Cap it.

Use 3/4 c per load.
Add 1/2 baking soda to a load if deodorizing is needed.
Detergent will not be foamy in machine... don't worry! It's not supposed to be all bubbly.

That's all there is to it! My 2.25 gallons of detergent usually last about 1.5-2 months. About 4 months ago when I started doing this I bought my soap supplies for under $6 at Walmart. I am still using the Borax and Washing Soda... these boxes aren't even 3/4 empty yet. I have had to buy a new bar of soap, and that will last me for two uses, about 4 months. So, if you are a math whiz you will have figured out that I have made nearly 5 gallons of laundry soap for a fraction of what we are used to spending on much, much less. Our clothes are clean, and I can control the materials I use so as not to offend sensitive skin in my family!

Next stop! Dish washer detergent! Will keep you posted!

~blessings!

Donna }I{

Time Flies! Happy Birthday! Happy New Year!

2012-01-07T11:57:00.003-05:00

The Sun is Rising on a New Year

Wow! Today is the Brighter Side's birthday! Has it really been a whole year since the page and blog launch? Time is a funny thing. Some days can feel so slow... like time is standing still... like the day will never end and I find myself just wishing to get to the other side of this 24hrs I am in. But no matter how slowly days seem to crawl, Birthdays and Anniversaries make me very aware of how fast time really does fly! A year ago today I wrote my first piece here, "Welcome to the Bright Side" and I introduced the partner site "The Brighter Side: Living With Lyme".

A lot has happened in these last 365 days... some happy, some sad... some things worth celebrating and some I'd rather not think about... but the biggest thing that has happened for me is what I heard myself say to a friend yesterday... "I'm doing okay. I still have flares and relapses but I'm happy.... it's more about Coming To Terms than anything else I guess". I suppose as much as we wish time really WOULD fly faster it seems that we need it to pass just as it does... slow enough for growing into... slow enough for capturing the butterfly kisses.... slow enough to unearth the nuggets nestled just below the surface. Time can give us the space we need to move into awareness. I guess what I'm saying is something I never really saw before now seems so obvious to me; we need time to "stew in our own juices" sometimes. Chronic illness gives lots of time for that... the stewing (with the right seasoning, lovingly stirred and not whipped) can make everything softer and easier to swallow. It even gives us that ability to see how our experiences move and change, just like the weather. The book "How to Be Sick" by Toni Bernhard talks about WEATHER and the practice of considering life experiences, emotions, frustrations, pain, and suffering to be like the weather - impermanent - flowing in and out of easy and hard, happy and sad, joyful and pained. It's kind of like the other saying I have heard and used so many times: This Too Shall Pass. It helps. I am learning to wait out the storms of life and lyme, and I am learning to seek shelter in the comforting presence of loved ones and friends both online and in person, the solitude of my quiet home, and the experiences shared by others. Sometimes I just sit quietly and do nothing. In all instances, like the weather my situation changes. It took a lot of "time" to teach me that. It took many cycles of this phenomenon for me to notice and trust in this pattern.

Another wonderful thing that has come my way over the last year are all of you, my readers! Not only do I cherish your visits and your comments, but I have made my way to your wonderful blogs and websites as well and feel very blessed to have become a part of this online community. Thank you so much.

This may sound strange but I have considered changing the name of my blog and site as I am pretty certain more readers would find me if the name was a little less happy sounding. Sometimes people who are in that "mired in .... " phase of chronic illness don't actively search google for sites to do with bright sides or optimism or positive thoughts and ideas. I'm not saying there is no room for joy in that phase, but my experience has been that there is a readiness for that which has to be reached by sometimes staying with the pain for a while. That's part of the process and, believe me, I have been there myself! However, as any self respecting blogger would do, I wondered how to increase my page hits and my thought was that if I had a more universal, less perky, lyme related name I might have a bigger audience. After thinking about it I realize that it might be much more aggravating to someone looking for something related to their specific phase in the process to land on my site because the name was misleading. I have opted to leave things as they are. My goal with these pages has always been to seek and share that silver lining in the clouds... the one that always exists and that is almost always made more brilliant and valuable by the presence of the cloud itself! That's a part of who I am. That's what I do. So why not say so? I hope that people who visit will find something to relate to, and will feel welcome to share.

So, here's to a brand new year full of surprises! I'm sure there will be ups and downs, and I'm positive the pages will go through some transformations along the way. I look forward to sharing with you here and on your own pages. Thanks for visiting! Happy New Year!

Wheat Free Gingerbread... Dad Tested, Puppy Approved!

2011-12-24T17:05:00.002-05:00

FINALLY! I finally had the time and the energy to make that wheat free gingerbread that I posted in "Wheat Free Gingerbread Anyone?" (click the link for the recipe). I have been waking up very early for the last week or so and have tried to use the time for quiet meditation and reflection. But today I decided it was now or never and so by the time anyone else awoke in my house I was dusted in flour and things were smelling great in here! Am I glad I did. I was kind of cranky at the outset, feeling irritated at every little thing life threw my way (and I DO mean LITTLE) and the process required in this recipe forced me to take my time... to do ONE step and then the OTHER. It was a meditation of sorts and I loved it.

First of all, I had to combine dry ingredients and sift SIX times! Six? Seriously? I almost didn't but decided to follow the recipe exactly... so six it was. Since I don't own a sifter I had to use a screen strainer, and since mine was half the size that I needed I had to keep splitting the ingredients and doing half at a time.

I loved blending the black molasses, white sugar, and yellow butter. It was so colorful and the fragrance was rich. Adding that to the dry ingredients, so patiently sifted, changed everything into a dry stiff clump, and then came the most unusual ingredient: Boiling Water! When I added the boiling water it foamed and bubbled and made me giggle. I didn't expect that, but it was a LOT Of cornstarch in there so I guess that's why. 1.25 cup of corn starch and 1.25 cup of rice flour. Last into the pool was a pair of well beaten eggs. I worried they would scramble on the spot from the hot water, but they were fine... and looked so pretty as the yellow swirled, following my spoon into the smooth dark brown batter.

Honestly? I was kind of sad that this was then end of the mixing.... but glad it was time for the baking because I couldn't wait to taste it!

The cookbook was so old it called for what I supposed used to be a standard brownie pan: 9 x 9 x 2. LOL! Try to find THAT these days. I did find 8 x 8 x 2.5 and so figured it was close enough, but the smaller pan made a deeper cake which messed up the cooking time. I couldnt' tell if it was burning by looking at it as the full cup of black strap molasses made the darkest cake you ever saw! It took several nose and knife tests to determine a.) it was not burning and b.) it was done at the center.

In the end, it was all well worth the effort, and the wait! I served up the first slice to my sweet husband who promptly enjoyed a few bites and shared the rest with his best buddy, Fluffy (his diet plan). He looked up at me and grinned, licking the powdered sugar dust from his fingers.... BUSTED! He said "Dad Tested, Puppy Approved!" and gave it the two thumbs up!!! What more of an endorsement do you need?

Yes, they really are that dark!

blessings!

~donna }I{

unforgetting...

2011-12-23T06:19:00.001-05:00

"un"
.

eyes unclosing
light revealed
illuminates
the barren field

night is ending
cast aside
awareness grows
of light inside

wings unfurling
love takes flight
heart unsealing
feels the light

eyes unclosing
heart unsealed
wings unfurling
to reveal

unforgetting
why i'm here
peace unhidden
end of fear

donna 5/20/2009

This little poem that I wrote over two years ago popped into my head this morning. Thought I'd share... I know it doesn't sound Christmassy in the least, but it feels like Christmas to me.

~blessings!

donna }I{

Making New Choices... from Christmas to College Plans!!!

2011-12-21T06:59:00.001-05:00

About three weeks ago I posted "Making New Choices this Season". So here we are, less than a week before Christmas, and I am sitting in my still dark living room with my gently lit tree, a single candle at the manger, and my Aunt's ceramic light up tree which was passed to me when she left this earth. Incense burns on the tray, and quiet music plays in the background. I feel deeply happy... peaceful. I feel the difference between "having Christmas" and "Celebrating Christmas". To the casual observer I am not doing anything different really. On the outside everything looks just the same. The same decorations are out. The same cookies were baked. The same music is enjoyed. Meals are planned. Gifts are purchased and wrapped. Additionally the same pain exists in my body, infact it's worse this year. The brain fog still hovers thick all around me. The same deafness sits clogging my ear and threatening the other one. The same pharmaceutical treasure trove awaits me every morning and evening. But something is very different on the inside.

What would account for such a different experience of seemingly the same life? Does it have to do with having made the conscious choice to be happy? Can it be that wrapping myself in the fabric of my life rather than fight and struggle against certain aspects of it has given me a whole new feeling? I think so. This cluster of illnesses has taken it's rightful place in this fabric, adding color and variety and a bit of scratchy irritation at times... they are a part of me now, but they do not define me. I can't control their presence. All I can do is move through my life with as much joy as I can find each day. So at this very hectic time of year I find that I am able to feel calm most of the time... and when I start to slip into panic... "UNconsciousness"... I have tools that I can use to bring myself back to the stable center. I can read works that inspire me. I can meditate. I can pray. I can listen to music that moves me. I can write. I can take a nap!

Other things still set me into a tailspin, like my 'baby boy' applying to 5 colleges last week and the natural panic that can hit when I realize that at this time next year he will be returning home for the holidays from some presently unknown location. I worry about deadlines and applications and checklists and financial aid. Okay... one monumental hurdle at a time!

I have mastered Christmas this year... now I need to apply the same approach to this new challenge because it's coming, and it's going to happen whether I am frantic or am calm. Wouldn't it be so much better for all of us if I were calm? It seems there is always a new hurdle, and each hurdle can help prepare us for the next. Lyme or no lyme, life goes on all around and within us all.

Living in consciousness... I wonder how long I can keep this up?

blessings!

~donna }I{

Wheat Free Gingerbread Anyone?

2011-12-20T08:38:00.000-05:00

I found a recipe today in my search for an old favorite of mine. Gingerbread was always a yummy treat and brings to mind special loved ones from my childhood. I've been longing to fill my holiday with the feelings of tenderness from my ancestors and one way to do that is through food. I'm not supposed to eat sugar or wheat, though I do at times. But, this recipe is Wheat FREE so I have decided to give it a try! I'm sharing it here with you just in case anyone out there wants to try it along with me! Found inside my old and falling apart "Joy of Cooking", the author says "unusual, yet perhaps the best of all"! That's good enough for me! I'm going to try it!

Wheat Free Gingerbread from The Joy of Cooking

Preheat oven to 325 F
Grease a 9 x 9 x 2 inch pan

Sift together 6 times:
1 1/4 c rye or rice flour
1 1/4 c cornstarch
2 t baking soda
1 t cinnamon
1/4 t each cloves and ginger

Mix:
1/2 c sugar
1 c molasses
1/2 c butter

with the flour mixture add
1 c boiling water

Add:
2 well beaten eggs

Bake in a greased pan for approx 45 min.

Lyme, Legislation, and Life Lessons

2011-12-16T05:55:00.006-05:00

Something exciting happened this week! A piece of legislation that a group of many legislators AND large group of well organized and dedicated volunteers have been working very hard on in Pennsylvania passed an important milestone on Wednesday when it was VOTED OUT OF COMMITTEE! A few months ago I didn't even know what that means (please don't tell my high school social studies teacher I said that)! It means that the assigned committee voted in favor of PA House Bill 272 and it will now be sent to the House Floor for a vote and I think it could be soon! If it passes in the House, if I have this right, we have to go to the Senate with PA Senate Bill 210, and if that passes we will have a comprehensive Lyme Bill here in PA!!! Admittedly this is all very new for me and it's hard to remember the process, and since Lyme has effected by brain it is still nearly brand new every time I look at it!

I never dreamed I would be an activist of sorts. This is something Lyme Disease has brought to me and I am grateful for it. The truth is the process is physically and emotionally exhausting for me and I have moved in and out of being able to participate fully. I work with a very understanding group of people on this. They all KNOW what it can be like because they ALL have lyme disease, or their children do, or their spouses or parents or neighbors do. In Pennsylvania we are reported to hold the unenviable position of the most lyme endemic state in the country, at least at last count. This position is swapped back and forth by New York, New Jersey, and PA.

I became involved in the push for Lyme Disease legislation after meeting a very committed and brilliant visionary... someone who believed that the only way to see things change in our state was to CREATE that change. Her small support group grew and began to take on more and more political action-oriented activities. I "met" her via some email communications that were started because I was looking for a Lyme Knowledgeable Neurologist and I cast a very wide net, writing to every support group within 200 miles. She didn't have a doctor's name for me but we started communicating about the state of affairs in PA, why it is SO hard to find a doctor when so many people are sick, and she started telling me about her aspirations and work she was doing to see legislation passed in the state: The Lyme and Related Tick-Borne Disease Education, Prevention, and Treatment Act. This act, when passed, will

create a task force on Lyme and Coinfections,
increase education and prevention,
permit doctors to diagnose and treat base on clinical findings without vulnerability to medical board reviews as we have seen in other states,
allow doctors to treat following the standard of care set out by ILADS,
require that doctors diagnosing a patient with Lyme Disease inform patients of ALL standards of care available when discussing treatment options (supporting current AMA standards already in place), and
disallow INSURANCE COMPANIES from denying coverage to patients for Lyme Disease treatment prescribed by their physicians

I was struck by the potential of this project and wanted to help in some way so I put on my thinking cap. What could I do to help that could be done from home? Not knowing very much about web sites and how to build them I said to her "You don't have a web page for all of this... would you like one?" and she quickly said "YES! Can you do that?" Well, I didn't know how really, but I sure had a lot of time on my hands so I figured that I could learn... and I did. Because of this advocacy project I have learned a lot over three years and continue to learn about websites AND the political process.

I have also had a bit of my political cynicism worn away as I have seen how important each person really IS in the political process. State Senators and State Representatives have granted us public hearings to share our position and provide information to them, they have taken our calls and even called us back, they have met privately and in small groups with us, and they have been forthcoming in their approval or concerns about the bill. Their approval gives us validation and energy, and their concerns give us assistance in our strategy, our approach, our language, and they shine a light on what needs to be done to meet our goal. I cried for a long time yesterday after watching the vote online. It was a single but important victory along the way to a hopefully even BIGGER victory... getting the bill passed! But it was also a huge "thumbs up" to those of us out here who still believe that this government belongs to US and that our leaders represent OUR needs... and it is our JOB to let them know what those needs are. I have regained a bit of my idealism, and that's okay. It makes me feel energized that this fight is winnable. It gives me great hope.

All of my advocacy efforts take place from my recliner on my laptop, a little bit here, a little bit there at all odd hours of the day or night. As you know, with lyme you can't dictate when you will have the energy or clear headed mindset so you have to strike while the iron is hot... and sometimes that means seeing insomnia as a blessing... an opportunity to make that update or answer that email. I can't get to rallies or public hearings but I have found a way to be a part of the process through my stubborn belief that I can learn how to do just about anything I need to do, and if I don't know how to do something I need there is always someone who will help me. I have also learned that when I CAN'T step in and help that I can take care of myself by stating my needs to the group. At one point I was just so ill, and my son's illness was in high gear. Life was very difficult and this work was making it more and more painful. At what was a very busy time for our very well organized and vocal group, Lyme Action PA, less than a week before a long planned and important public rally at the capitol building in Harrisburg, I had to say "I am sorry, but I just can't do this right now. Someone please help me... for now... until this passes." And to my delight MANY people stepped forward to help maintain the website and facebook pages until I was able to come back and participate again. It was an act of pure faith to do this. I knew in my heart that help would come if I sought it... and it did! That strengthened my faith.

What I have learned because of my involvement with the group now known as Lyme Action PA surpasses anything you will see on that webpage (www.lymeactionpa.com). I learned that I can do more than I think I can, and when I can't ... well... that's okay too because there's always someone there to help. I can take care of myself AND do what I can do for the cause. I learned that most politicians really do want to hear from their constituents, and sometimes when they don't know what's happening with a particular bill it isn't that they don't care but it's because it is only a stack of papers to them (one stack among literally HUNDREDS of stacks of papers). Until they start hearing from the people impacted by the particular issue it hasn't got a lot of real meaning. They are there to represent us and if we reach out, make enough noise (intelligent, well planned, articulate noise) and keep our minds open we can make progress towards our goal.

You will find the full text of the house and senate bills, as well as various activities held, important links, and much more including video links to both public hearings on Lyme Action PA: www.lymeactionpa.com.

blessings~

donna }I{

Equanimity, do your thing!

2011-12-09T08:28:00.000-05:00

Venturing out to do a little Christmas shopping today. I am only going to ONE store and have managed to find a friend to go with me. Then we will stop for a snack and come home. This is my plan: to see my friend, to look in the small store I have chosen, and if I find what I want for my sons I will get it and if I don't that's okay too. No big deal. I have decided that no matter what happens on this excursion it will be fine... practicing my inner smile.

Equanimity... do your thing!

Blessings~

donna }I{

Doing "The Work" Eases Christmas Strain

2011-12-06T09:29:00.002-05:00

I have been meaning to do "THE WORK" as taught by Byron Katie but have not really been feeling very well... haven’t really written much at all in fact. But I’ll give it a try today around the topic of Christmas Shopping… because I am really feeling taunted by my inability to get out there and get anything at all done. I did say in "Making New Choices This Season", that I would try to share my process... so I will for what it's worth. This will seem a little academic perhaps, but here goes!

The basis of "The Work" is centered around 4 questions and a Turn Around statement. These can be found in "The Little Book" at http://thework.com/downloads/little_book/English_LB.pdf

First one needs to have a statement about whatever is distressing, and then follow the steps/questions:

1. Is it true?

2. Can you absolutely know that it‟s true?

3. How do you react, what happens, when you believe that thought?

4. Who would you be without the thought?

5. Turn it around, then find at least three genuine, specific examples of how the turnaround is true in your life.

My stressful thought: I wish that I could handle the shopping like I used to. My legs hurt. My feet hurt, and I get so tired so fast. Even with my promise to spend very carefully I’m finding that GETTING there seems too large a task. It’s very distressing.

Is it true? It’s true.
Can I absolutely know it’s true? Sure. It’s absolutely true. But some days it’s less true than others LOL! So maybe it’s not ABSOLUTELY true. Hmmmm. How things change while we do this work. I guess that's one difference between actually writing it down and just thinking about it. Thinking about it works in a pinch, and I imagine with more practice it can be pretty effective, but as a beginner I can see the value in the process of writing it out.
How do I react and what happens when I believe that thought? For one thing, I feel absolutely imprisoned by lyme and all it’s coinfections. I feel controlled by my disease. It is stopping me from doing what I want to do, which is putter around, enjoy the colors, sights, and sounds… get some ideas for gifts that I do want to buy and even go back another day. How can I know how I’ll be feeling on another day? There is so much pressure in it for me. If I DO go out I feel like it has to all get done because it might be undoable in the future. Doing it all in one shot is not really a good idea either because of the backlash that is likely – the pain and the fatigue will hinder me long after the outing is over. I’m trapped. What happens when I feel trapped? I disassociate from the whole thing… I deny that its an issue. I ignore it. I might be avoiding the pain in some ways, but I am also not getting what I want, and what I WANT is to be able to enjoy the holiday season from outside these four walls and to find (or make) some meaningful gifts for a few people that won’t break the bank.
Who would I be without that thought? I would be Donna, sitting in her chair, watching the fire and having a nice cup of coffee… listening to the flames against the air – loving that little lapping sound.
Turn it around, then find at least three genuine, specific examples of how the turnaround is true in my life. That’s a hard one to turn around. Hmmm… Maybe the turn around is that I don’t want to live life as I used to at the Holidays.

I am less frantic and worried about finding the perfect gift and feel easy with finding or making a nice enough gift.
I am spending much less money than I used to and trusting that the size or price of my gift is unrelated to the value of my relationship with the receiver.
I have more energy to enjoy other things, like gift wrapping. I have LESS to wrap as well. I am learning to ask others to help me when I need/want help.

This is an opportunity, once again, to slow down and live with intention; to spend my vital energy on what is important, not waste it on frivolous activity that not only wears me down but gives nothing to me in return other than the fleeting feeling of satisfaction of being “done” with my shopping.

I’m not trapped! Hey, how about that!? I am making a decision to not over do – to not hurt my body – to not overspend – to not turn the season into a season of torture for myself.

I need to live my life the way it IS, not the way it USED TO BE.

It's Not the Wings, It's the Flight!

2011-12-04T10:51:00.000-05:00

blessings!

donna }I{

Making New Choices this Season

2011-11-27T08:29:00.024-05:00

Anyone who breathes in and out and has a heart that beats on a regular basis has learned that, without a doubt, things don't always go as planned. The disappointment and judgement that can result from all the unexpected (unwanted) changes serve to illuminate the "plans" we may not have ever been aware of ... but were counting on.

This time of year brings us face to face with the financial drain brought on by unexpected changes, in my case my illness, and it occurs to me that maybe I have a choice here. I can't choose to have more money, or to have a job, or to have a winning lottery ticket. But, when faced with the choice between "find a way to buy more than i can afford so that everyone can have a nice Christmas" and "happiness" the only one I have any control over is "happiness". It occurs to me that maybe, just maybe, my recent holiday doldrums have stemmed from my continuously choosing over-spending and living in illusion. The truth is we do NOT have a lot of money for presents and pretending we do, or that our situation will magically change, is causing great angst and anxiety and disappointment (and bills) - believing this is causing suffering. Wanting things to be other than they are is causing suffering. It's another way of resisting what is... of refusing to accept life as it is and constantly trying to get back to life as it "was". It's even less about money than it appears to be and MORE (all?) about living in the truth that is mine. Life, as I know it, is very different than it used to be. Okay. Does that have to signify the end of joy as I knew it?

I have been reading from Toni Bernhard's book "How To Be Sick" about the truth that we create our world with our thoughts. I never really had much more than a superficial grasp on that, but today it seems to make sense. For example, I have created a world for myself that was filled with lacking and melancholy and 'not enough' over the years by telling myself that I had to spend a lot of money to make a nice Christmas for everyone... that without that "WOW" gift for our sons they would feel cheated.... that without the visiting or the parties or the glitzy dress up events of the season we were unworthy and pathetic. And, what I was telling myself I was falling for... hook, line, and sinker! I was really brutalizing myself now that I think about it.

Maybe this year I can create a different world for the holiday season.   Maybe this year I can choose differently and not pay so much attention to my thoughts. After all, gifts don't have to cost much, if anything at all. The best gifts I remember getting are not the ones that were expensive but that showed me the giver knew me. Unwrapping a gift like that was the most validating, sweet and delicious experience of all.

I choose happiness this year. I am going to have to remain vigilant and conscious of this choice I am making! It isn't easy to break such a long standing habit of self-brutalizing.... but I'm going to do it.   I've been reading about "The Work" by Byron Katie and have the inclination to practice this "work" on this very topic, and I am also inclined to share the process with you.... we shall see! A wonderful resource that describes "The Work" and how to do it can be found here in "The Little Book", in case anyone is interested in looking it up.

blessings!

donna }I{

Creating Space for the Season

2011-11-25T08:55:00.006-05:00

I hope you all had a day filled with ease and gentle surprises yesterday. Holidays can be tricky and over the years I have
found myself wishing that I could find a way to sleep through every minute and wake up on the other side no worse for the wear. But that never happened. I have been dreading the 2011 Holiday Season and working on exercising my free will to make better choices - to create enough space inside so there would be room for everything that comes my way.

Thanksgiving Day is behind us now and, I have to admit, I am surprised!

I am surprised by the fact that I enjoyed the day, start to finish, with very little stress.
I am surprised that my oldest son actually hung around after dinner and spent time with us instead of running off to a friends house before going to work.
I am surprised by the pleasure my son's took from drinking their juice or water from giant, I mean GIANT, wine goblets that I found from our former days of having parties! They made the table look so pretty and festive.
I am surprised that the fire in the oven did not trigger a meltdown. It wasn't a very BIG fire after all! It went out as soon as I turned off the oven all on it's own.
I am surprised that the very real possibility of NO STUFFING for dinner did not reduce me to a complete blubbering crazy person (because the stuffing was the only thing that still needed to cook after the over fire, and the oven could not be used again until the grease spill from the collapsed roaster was cleaned). The stuffing is my favorite part of Thanksgiving dinner, and I made this from scratch, for the first time. My body ached from the standing and chopping and now the thought of not having it was almost too much to handle. My husband said "You can finish it in the microwave. Besides, I don't think we'll starve." I looked at the table full of enough food to satisfy a small army (or football team) that we had prepared for just the four of us and laughed out loud. I suddenly heard myself saying "If this microwave idea works that'd be great, but if it doesn't work that's really okay too"! Funny how a thing like stuffing can put you over the edge... almost!

With a lot of help and teamwork everything worked out fine. The oven is in self clean mode at the moment stinking up the place, the refrigerator is brimming with leftovers waiting to become sandwiches and soup, and my body is humming and throwing off zappy stingers everywhere. Today is a day for resting and nibbling. I am diving into a new treatment regimen to try and regain some of the ground I have lost. Babesia has relapsed and Lyme and Bartonella are flaring... back on some old meds and preparing to add some of Byron White's formulas as well. So thankful that I was able to enjoy a lovely day with my family yesterday and now trying to enter this new phase of treatment with an open mind and heart. Creating space inside for the potential (probably) herxsheimer reaction. Stopping myself from wishing that herxing wasn't part of the process. Understanding that the herx is one of the only predictable part of this roller coaster I find myself on, it signifies progress, and it is something to be thankful for as much as a dish full of stuffing finished off in the microwave and browned under the broiler!

Blessings!

donna }I{

Sorting it out at the Holidays

2011-11-22T10:27:00.000-05:00

Holidays are usually very hard for me and so I am finding myself very focused on efforts to enjoy this time within my own limits and according to my own tastes and worry less about who I am disappointing or what I cannot do. Easier said than done, but this has to be doable.

I have taken inventory, I guess you could say, and one thing I know that is effecting me has nothing to do with my illness so no point in blaming the lyme for this one! My happiest holidays were when the kids were little, which I know is not uncommon at all. It's an adjustment that I usually welcome, watching these boys of mine turn into men. But, there is this "fun gap" that I am noticing and so I decided to do something about it. I have a friend who has a middle school girl and so I invited her to bring her daughter and a friend over one day for a cookie decorating party! I have icing bags and tips and rings! We used to have so much fun decorating cookies together here, but now no one is very interested. Mind you EVERYONE loves to eat them! At any rate my friend loved the idea so now I am looking forward to this fun day! I'll make it as easy as possible on myself and it will take some planning, but it will be fun!

Not all of my melancholy comes from the lyme. Some things are quite unrelated. It reminds me of a favorite prayer:

blessings!

donna }I{

Everybody Hurts... Sometimes

2011-11-17T11:43:00.003-05:00

I am moved to tears when I see the impact that Lyme and related illnesses has on people's lives. It's not always easy or even possible to, in a given moment, practice the calm and the equanimity that on other days comes easily and flows in and out of us like water. It's not always easy, or possible, in any given moment, to remember that we are not alone... to remember that we are never handed a challenge in this life that we are not also handed the tools to manage and find our way through. I am moved to tears when I see the suffering and pain and loss. I am also moved to tears when I see the strength, the brilliance, and the dogged determination that challenges like this seem to bring out in people who never dreamed they were made of such steely resilient 'stuff'..

This song, below, which was first shared with me by a special friend that I met in an online support group for fibromyalgia, has become my go to song when I feel so powerfully sad and have hit the wall.

I am sending this out to more than a few friends who are hurting today...

Everybody Hurts, The Corrs.

love to you...

blessings~

donna }I{

Balance. Equanimity. Time to Breathe.

2011-11-15T16:05:00.002-05:00

It's funny how the universe always sends us what we need. I may not be saying this had the outcome of my minor car accident yesterday been worse, but it was minor and who's to say that wasn't by design? Certainly not me.

I had been reading from "How to Be Sick" and came upon the Buddhist teaching of the four sublime states. I can't remember what chapter I was in and trying to find it now on my tiny ipod Kindle app is making me dizzy so will just get to the point and maybe I can find it later. The fourth sublime state, UPEKKHA refers to EQUANIMITY. I hadn't ever thought much about equanimity before, tho I have heard about it a lot and it just so happens that my zodiac symbol is Libra's 'balance', so it doesn't surprise me a bit that this idea has come to the foreground for me. I don't believe in coincidences, so to me it's just one more nugget unearthed.

Balance. It happens when we find our center, and our center never goes away we just keep stepping far to one side and then the other, especially in times of stress and turmoil when we need our center the most. Balance. It's something that I have been struggling to regain since just before my diagnosis (if ever I had it to begin with) and while my gargantuan 'swings' have become less drastic and I have even landed at the center every now and then, I find it a difficult place to hold. Then I read something somewhere in Toni's book, and although I cannot find it, no matter how hard I look today (I've stopped trying), I will tell you this. I was in a car accident yesterday. It was minor, no one was hurt, and both cars only sustained minor damage. The police officer who was called did not even write a report. "Exchange information ladies and decide if you want to work it out on your own or with your insurance companies". I was beyond distraught, though. Late for a meeting (I don't do late well) and unable to locate my current auto registration (which I was holding in my hand but reading wrong which is part of my new normal) I succumbed to a meltdown right there near the intersection of one street and another. I cried because I have never been in an accident like this before, and I still can't quite figure out how it happened and why it was my fault. I cried because I couldn't locate the registration and feared getting a ticket for that (I did not get a ticket - the officer looked at the tag on my license plate. Had he looked at the paper in my hand he may have locked me up in the asylum right then and there). I cried every time he said "It's an accident. It's no big deal" and I thought "but it IS a big deal.... I am unemployed because of stinking stupid LYME disease... SSD is taking forever to decide if I have to go through yet another appeal, my husband works SO hard and we barely keep up and now this happens... we don't have extra money for this sort of thing!!!" I was distraught, to put it lightly. It was a panic attack, temper tantrum, and pity party all rolled into one. Sigh. It was exhausting. The officer left. Eventually I calmed down and we exchanged information, each went our own ways, and that's the story of my accident. What was DIFFERENT for me is what came next.

I continued on to my friends house to work on a project and she gave me a big hug, offered me tea, and things started to feel calmer. I suddenly laughed and said "Well, I've been reading about equanimity and I guess the Universe figures I need some practice.... so here's my chance!" We both laughed, and ended up having a very productive meeting. How surprising! This was new for me, to be able to stay focused and present, for the most part, leaving the recent events alone. For the rest of the day when I caught myself drifting into panic and emotions over the accident I would repeat this to myself: "When accidents happen it's okay. When accidents don't happen, also okay" which sounds kind of silly and felt contrived but I kept doing it. I had many opportunities to practice throughout the day: when I had to call my husband and tell him that the only basically nice thing he owns now has scratches down the passenger side, when I had to call my insurance company with the details, when I had to speak with the other person's insurance company about the details... when I had five minutes alone and the thoughts crept in. Each of these were opportunities to practice... to focus on this sublime state of UPEKKHA... to consciously seek equanimity... to create peace inside. It worked, too. It took me out of the fevered pitch of emotions and brought me back to the center, where living feels calmer and easier and okay. Equanimity. I admit that the accident wasn't serious, but my reaction was extreme. I was able to bring myself to this state, over and over again. So, three cheers of gratitude to the Universe for offering me such a great opportunity to practice. I hope that I can remember this in the future and consciously make a habit of bringing myself back in this way. Time to break out the box of markers that I have which are meant to write on GLASS. I think I'll write this across my bedroom mirror, right under the definition of Maitri (unconditional friendship with self) and a statement about groundlessness from Pema Chodron. I've started using my bedroom mirror to keep track of ideas that scream "DON'T LOSE ME. YOU'RE GONNA NEED ME!" It helps! Lyme has taken my ability to remember things like this.... but Crayola has come to my aid!

Blessings~

Donna }I{

Flashing Back and Fast Forwarding

2011-11-13T08:35:00.003-05:00

I was reading in "How to Be Sick" this morning and experienced what I guess I'll call "the slide show effect" .... I kept seeing images of past poems, stories, blogs, people .... I was reminded of so many other things and times in my life.   I was reflecting on powerful insights and important learning I had experienced but forgotten! FORGOTTEN???!!!! Who forgets such things? Sometimes I look back at these flashbacks and if it weren't for the fact that I find them in my own personal files or on my own password protected pages I wouldn't be able to accept them as my own because they look foreign to me. This makes me wonder about how the lyme has effected my memory and does this memory problem effect my healing and if it does is there anything that I can do about it? I don't know. Maybe this is how I always have been. I have no memory of my self when I didn't have lyme, so how am I to know? Maybe this is just my natural process. Maybe I am meant to keep revisiting and relearning the same thing over and over again.... and then again maybe it's this way for everyone anyway. Maybe we all have to keep revisiting and relearning.... maybe that's just the way this sort of thing evolves - piece by piece and layer by layer.

Toni was writing about "Who is Sick" when I kept flashing on a piece I wrote several months ago titles "I am not LYME"   The take away message from that piece, now that I look back at it, was this: "if you are more than a bag of borrelia, a sack of spirochetes, a breeding ground for bartonella... what ARE you?" and in record time I answered myself, first quietly and then out loud "everything... I am EVERYTHING ELSE!"    I wonder how it is possible that I could forget such a revelation. How on Earth is that possible? Fast forward to yesterday I was telling my husband about my sadness with this losing battle I seem to be fighting and I used the words "empty box". I told him "I am just an empty box and wherever we go in our lives that's what I am... a box full of nothing". What I was feeling was incredible loss over those things I cannot do anymore - the ways I have had to modify everything. I was also, admittedly, feeling sorry for myself... AND I was projection my worry and grief onto him, imagining that he was now stuck with a box full of nothing where there once was such promise and energy and excitement for life which I am quite certain is all my fear and none of his feelings.

I had gone from a sack of spirochetes to a glorious union with EVERYTHING to a box of nothing! My goodness how perception can change and shift. Ahhh... like "the weather", which I wrote about just three days ago in "Early Thoughts on How to be Sick". Flash back to two days ago when I was reading about "the Broken Glass Practice" in Toni's book where she shares reflections on impermanence and honestly not sure what to make of all this "flash backing" and "fast forwarding". I feel myself coming back into a period of rapid realizations and creative power. It might sound exciting and wonderful but these sorts of times in my life often leave me exhausted and wondering what just hit me - an uncontrollable awareness that won't sleep and often leaves me walking away from all things reflective or creative or thought provoking. It just happened recently which is why I have been gone for so long. I've seen this before and but this time feels different.... Is it?   I wonder if because I can actually see it coming and feel it emerging if there will be something new and unexpected about the experience for me. I mean, the noticing is new. Am I new? Whoosh back to "Who is Sick" and thinking that my answer is yes... I am new because I am not ever the same... I am new each moment.... and I am going to have to let this quote from Toni's book sink in "there is sickness here but I am not sick".   Look closely at the butterfly at the top.... notice her wings, broken... yet she is unbroken.   Her graceful flight was unaffected by the obvious injury to her form. This was very powerful to me - that she was able to fly anyway. I have more images of butterflies with broken wings and I'll share them later when I find them all.... but it was a lesson in this concept of I as separate from form.

I'm going to stop for a while but I'll be back to add to this piece later.

So funny, I was poking around facebook and getting up the nerve to ask Julia Cameron a question about the cycle of "blockages" when I came upon HER post which contained the lyrics to the song Across the Universe (the Beatles). So suddenly I didn't need to ask in the same way... more like I had something to say: This is beautiful and really resonates with “spots” in my life… my journey. Wondering – is the “block” as important to the process as the “creative flow”? Wondering, as I feel myself coming out of a tremendous period of blockage if that wasn’t actually a necessary part of my process? Or is that just a pointless rationalization designed to give some sort of reason for my departure? I have no idea anymore. Maybe, because I am so acutely aware of it THIS time, the simple act of being aware changes the process forever.

I find it more than a little interesting that Toni Bernhard's writing also listed a Beatles song which I haven't listene to yet titles I Me Mine, but I'll get to it. Here is Across the Universe
:

Faith Stepping .... One Bridge at a Time.

2011-11-12T07:41:00.000-05:00

A common theme throughout this adventure in Lyme and all that goes with it is the concept of letting go and I know that many of us struggle with this... with surrender. Someone dear to me often says "don't be attached to the outcome". It took me a long time to figure out what that really means, to not be attached to the outcome, but over time as I remain open to this suggestion I realize it's meaning in a gradual way. To me it is synonymous with "be present". In other words, take each moment as it comes in the truest sense of the word.... realize that each step truly is a leap of faith. Over time and with practice it feels less like leaping and more like flowing. It's been a difficult shift for me because I like to plan, and the plans I make are based on my past memories and assumptions about results! Stuck in "past" and "future" mind activity my choices are more often than not bound to a need to believe in the logic of what I am doing ... high expectations lead me to hold on tightly to the scenario created by my mind. Oh, it's a lot of pressure that I create for myself! It's an unnecessary burden and when I try consciously to NOT be attached to the outcome of whatever I am doing I always end up in a better place. It's beginning to dawn on me that the outcome doesn't change if I worry more, but the process is so much more painful. It doesn't mean that I stop planning... it means that I plan to trust my instincts more and worry about outcomes less. I'm getting better at it, but have a long way to go.

I am currently involved in the perfect opportunity to practice this faith stepping. While I halt all treatment and wait for lab work results I am faced with all the "what ifs" teasing me. "What IF I should have stayed ON treatment while I waited?" "What IF this flare is really the start of a serious relapse?" What IF going off treatment makes me more likely to become allergic when I go back ON?" "What IF I discover I can't use these particular medications anymore? What then?" So many what IFs, and no way to answer any of them. I need to let go of the over thinking, over reaching, over needing of answers and trust that where I am and what I am doing is exactly right for this moment in time.

Each moment will bring a new opportunity to shift gears if necessary. A tiny voice in my head is saying "Trust yourself. You know your body needs this break more than it needs those medicines... even if you DO relapse a little... you will cross that bridge when you come to it. Right now you are crossing THIS bridge... one bridge at a time kiddo!"

Blessings!

donna }I{

Early Thoughts on "How to Be Sick"

2011-11-10T19:38:00.006-05:00

I guess people who don't have much experience with chronic illness might think it's kind of a surprising title for a book - How to Be Sick. I mean, who needs help on how to be SICK? RIGHT? I guess we'd much rather focus on how to be WELL, and so I had initially passed this book by even though I was definitely in great need of it (and, I also knew that my degree of resistance to it was directly related to that need... need I say more on that?). Now I am finally reading it and realizing, not surprisingly, that this book I had consciously avoided is indeed the book I have been looking for. This little book (well, I'm not sure HOW big or little it is because I'm reading it on my ipod Kindle app) tells the story of Toni Bernhard (the author) and her experience with Chronic Illness. It not only describes her experiences with the illness, but also contains many resources for coping from the Buddhist perspective.

We all know HOW to be sick... as long as we are certain we are getting better it's not such a big deal, right? NBD as they text these days. For me "sick" and "better" have always gone hand in hand like peanut butter and jelly, ice cream and hot fudge, Dick Van Dyke and Mary Tyler Moore! NBD. There is an order to things. First you get sick, and then you get better. Always. Every Time. That's just how it's been.... Until now. Now Lyme Disease has rocked my world and while I try stay positive and focus on the things it has given me, I have to also acknowledge the things it has taken. It's hard to look at those things, so I realize I have skirted around them a bit too lightly. Life takes things away from us and we don't like it. We learn how to cope with a variety of loss as we grow through the years, if we are fortunate enough to have a LOT of them. We learn how to handle a lost job, a lost love, the death of a loved one, the loss that comes from moving away, the loss of our children's childhoods, the loss of our role as parents of little ones... we have lots of practice with loss as we grown into adulthood. But this Chronic Illness thing is just something that I never expected and it is taking me a long, long time to get used to the idea that this is my new normal. I thought I would have a few years to beat this thing before my senior years set in but now these are beginning to overlap at warp speed and I can't tell where the illness ends and the aging begins. Thing is, the trying to find that line is driving me crazy and breaking my heart. No one gets to know where that line is and part of accepting this challenge lies in letting go of the search and surrendering to what is. That's what this book is about, I believe. I'm only a few chapters into it but it is so thought provoking.

Today I read about what Pema Chodron calls "groundlessness" The author uses WEATHER as metaphor for our moods/feelings, drawing the parallel that we cannot control either... she says

"we can't control what thoughts arise in the mind. (Telling yourself not to think about whether you'll feel well enough to join the family for dinner is almost a guarantee that it's exactly what you WILL think about!) And moods are as uncontrollable as thoughts. Blue moods arise uninvited, as does fear or anxiety. By working with this wind metaphor, I can hold painful thoughts and blue moods more lightly knowing they'll blow on through soon - after all, that's what they'll do."

It's a great metaphor... aren't our feelings just like the weather? Blowing in, stirring things up, and blowing away again? Poof and whoosh. Another thing I think she is saying that our thoughts actually cause us to hold onto these feelings and moods too... which makes them different because we CAN'T hold onto the wind or the sunshine no matter how hard we may try. So, anyway, I just thought it was a helpful way to look at it. Thought I'd share.

Goodness... after my long drought I have posted THREE TIMES today. Hmmm..... So much for the rules! :O)

Everything is Temporary

2011-11-10T16:51:00.001-05:00

Not really sure where this bit of writing will lead but I suppose any writing worth doing involves a leap of faith so here goes.

I'm in a sort of betwixt and between place, in more ways than one. After some strange reactions in my body with one antibiotic I stopped it to see what would happen... seemed to get a little better so am still off of that one. A short trial brought a resumption of neurological symptoms and so the hunch is I have reached a toxicity level with that one... but see it's only a hunch. The symptoms overlap lyme and bartonella so how am I to know for sure if it was die off, flare, or reaction? The answer is I don't get to know. Groundlessness.

Last week I noticed some bruising in my mouth along my gumline. I had some a few months ago and didn't think much of it. It went away. I figured I bruised myself with a new toothbrush.... but last week it was back. I looked up the side effects of the one remaining medication I was taking and this sort of thing was vaguely indicated (you'd think I'd be pretty comfy with vague by now) and so my Dr. ordered blood work to make sure I wasn't running into clotting/bleeding issues. He was pretty sure it was a case of Lyme patients bruising easily. That was LAST Friday. Still no word and after calling every day to get results (and now taking NO treatment) I learned that my blood results were never received. I called the lab and had them re fax them, which they said they did. Still no word yet. Sigh. Groundlessness.

I feel so frustrated with my situation, which is exactly what groundlessness does and so at least I'm doing THAT right.

I have just started reading "How To Be Sick" and I really like it. Not that it's making me happy or giving me any aha moments yet...I know better than to have that expectation by now! In fact what is happening is the opposite... I relate so strongly to the author's story that it is bringing up pain and sadness that I thought I was beyond... but I'm not. I'm feeling very sad today. Acknowledging my losses and wondering what/who I am today. I guess I'm just me, feeling sad. I will keep reading and watching my reactions. Experience has also taught me that this sad feeling is temporary and I am so thankful for that. Everything is temporary and so I guess that means feeling great is also fleeting. I suppose the beauty in that lies in knowing that it'll be back, and it'll be delicious.

Breaking my own rules

2011-11-10T10:57:00.001-05:00

I've been feeling a pull towards my writing again yet pulling away as soon as I try. Not sure why that is other than this nagging feeling that I have created too many rules for myself and this is blocking me in a big way. My original intent in creating this blog and website was to provide a place for people to come and find information that could help in the day to day aspects of living with Lyme Disease. I wanted it to be a place filled with positive energy and great ideas, and I think I have done that. However, it has stopped growing and I feel it is trying to tell me something. My life is trying to teach me something, but what could it be?

Many times over the last few months I've come here to the blank page, filled it up with my thoughts and experiences, and deleted every last morsel. Censorship to the max. It appears the chopping block has been very very busy. The only thing that makes sense to me is that I have created this stringent rule for the blog to only include inspiration and ideas for living and anything that doesn't fit gets the ax. Somewhere along the way I must have decided that my real experiences must be judged as uninspiring and not necessary, fruitless, and not worth sharing. I'm not sure of much these days, but I am sure of one thing; these rules and standards have led me away from something that helps me and so it seems time to change the rules and discard the standards. Maybe the only rules for me here will be this: If it's honest, if it's real, and if it is responsible then it can stay. It seems that if I stick to these guidelines then I am standing in my own light, and that in and of itself is a brighter side of sorts.

So, here I go... breaking my own rules. It feels good, and so already I know it's the right step.

Blessings

donna }I{

coping

2011-08-25T09:47:00.003-04:00

When the doctor told me to resume treatment for Babesia a month ago I was floored... FLOORED. Not sure why it came as a surprise to me because I actually knew long before this that it was back.That ever familiar "think" that happens (I was going to type THING... but this is a very relevant typo so I'm leaving it). The "think" that happens to me that I am only recently becoming aware of enough to let it help me is I find myself saying thinks like "Phew. I'm glad this or that isn't what's going on for ME." Invariably it is always exactly this or that going on with me and I've come to accept that this is my version of "intuitive dodgeball" where the part of me that knows what's going on tries desperately to give me a clue and the part of me that doesn't want to hear it simply ducks out of the way. In this case I was finding myself thinking things like "well, I'm glad I don't have that kind of babesia that keeps coming back" or "phew, I'm sure glad I am finished with that babesia mess". Ahhhh... clues. But I dodged them all until my doctor got me right between the eyes... bam... babesia.

Why am I telling you all of this? So that I can tell you this: I'm learning that coping with the truth takes much more conscious effort than coping with a denial, but it's worth it. My coping strategies have changed a little bit over time, too. I used to dabble in distraction in a big way. But this morning I sat myself down and, fully aware of the shaky combination of tremors and panic rising up in me, said "now this is a physical manifestation of my illness... no different than sneezing... don't judge it just let it roll. It will pass". Actually that was new for me, and it helped. I'm going to try and keep doing that. I am also going to call on the helpers who have come my way and, though for some reason it requires swallowing a huge lump of pride, ask for their help even if it means going out of their way.

Sometimes Living on The Brighter Side means finding our way in spite of ourselves. It means learning how to create more space, once again making room for more challenges, and believing we are big enough to hold it all. I'm getting there I suppose but it takes time.

~blessings

donna }I{

Play Is Important!

2011-07-16T10:12:00.000-04:00

Wishing you all a good Saturday morning!

I've been having a lot of fun playing with my camera and computer and finding new ways to look at my vacation pictures....

Here is one of my favorites...

It used to look like this:

Play is so powerful... it's not just for children. When we PLAY we suspend reality for the time being. When we play the impossible becomes possible. When we play we allow ourselves to become immersed fully in our own NATURAL PRESENCE. For me playing with photography has led me to a new way of seeing the world, and the worlds within worlds all around us. Light. Shadow. Color. Shape. It has all taken on new meanings.

So... it's SATURDAY!! Go play!!! You'll be glad you did!

blessings~

Donna }I{

The Value of Shifting the View

2011-07-13T07:46:00.001-04:00

There is value in looking at the ordinary from a different perspective. In doing so we learn that every aspect of our selves, our surroundings, our world has more than one side... it has more than one way of "appearing" while remaining constant in it's "being". We learn that sometimes it isn't only the light that makes something breathtaking, but also the shadows... the spots where the light is resting. This simple daisy was shot from a bug's eye view... it faces away from the camera lens and appears to carry strength and power... the transparent petals each revealed by the contrasting shadows, one overlapping the next. These are things you can't see while always aiming the camera down at the flowers... sometimes you have to be like a bug to see the flower in a whole new way.

The Messages of Illness

2011-07-11T10:35:00.009-04:00

While talking with a trusted confidant this last week I posed the question "WHY? Why did I fall and why did I fall so HARD?" I was referring to the emotional 'crisis' which happened simultaneously with my Lyme diagnosis. They went hand in hand, and the reason I was so bent on finding out "WHY" this happened was because, quite honestly, I am terrified of the implications of a relapse. Having come so far in my healing the physical, emotional and spiritual parts of my self I wondered, with good reason, if a relapse or flare or new infection could ever do that to me again. Could a physical recurrence of Lyme or coinfections be the catalyst for yet another emotional crisis? The depths of my depression were rivaled only by the heights of my anxiety. The physical symptoms and flares had all been disregarded to that point, but the emotional crisis I was in thankfully lead me to a therapist who not only recognized lyme, but was in treatment herself. Uncanny. Miraculous. Blessed. That was over three years ago.

So, my friend related her thoughts on my question and it went something like this: one thing that illness DOES it is forces us to come to a full stop so that we can finally address our own healing. Illness, I think she was saying, is our body's way of initiating the last straw scenario. It sure had done that. Not only did the illness force me to attend to my physical needs (which were great), but also my emotional and spiritual ones (which revealed an almost insatiable hunger welling up from within).

That got me to thinking about something else.

In looking back over the nearly three years since my diagnosis I can see, very clearly now, that I traded one obession (work) for another (the lyme wars). I may have finally conceded to leave my job to focus on healing after one full year of treatment battles, but I believe I traded one rat race for another and until I was able to let that go I was unable to make substantial progress. My body was STILL shouting STOP... PLEASE STOP! I thought I had stopped, but I hadn't. I had simply shifted obsessions.

Over the last few months I have let go of fighting the establishment. I have stepped away from the lyme wars and all of the intense work it takes to advance such a cause. Regardless of how noble the cause, the outcome for me was that I remained stuck in a place of sickness. Since making this effort to step away I have experienced remarkable progress against the infections and have done things that I haven't done in years. I threw a big party for my son's graduation from High School and planned a vacation for my family in the Finger Lakes of New York State. We had not had a party at our home or been on vacation in over FIVE years... FIVE YEARS.

It suddenly occurred to me today that perhaps the reason I was able to progress, finally, was the result of my letting go and making room for this final (I hope) push to materialize. Perhaps. I'm not sure where I am in my healing process but I know that I have made rapid improvements in the last several weeks. The fact that this progress happened simultaneously with my conscious 'letting go' gives me pause. Coincidences? I don't believe in them. Everything happens for a reason and though I don't pretend to be able to know all the reasons I DO know that I sure enjoy the quest.

The picture you see at the top, by the way, comes from my vacation photos and is my absolute favorite shot. This chair on this dock with this coffee cup in hand gave me three glorious sunrise retreats!

blessings~

donna }I{

BREATHING... not just a good idea, it's the LAW!

2011-07-09T11:05:00.002-04:00

Ahhhh... have you taken One Beautiful Breath today?

I wanted to share this resource with you that came from the "Sounds True; Insights at the Edge" interview series. Tami Simon interviewed Yoga instructor and self proclaimed "breath obsessed" teacher Leslie Kaminoff on the work he does and the healing properties of "One Beautiful Breath". To listen or download the interview CLICK HERE...and if you do, let me know what you think!

Anti Inflammatory Tip of the Day! CARROTS are IN!

2011-06-23T07:51:00.004-04:00

And the winner is..... CARROTS! These tasty bits of long slender goodness are high in carbs, but don't let that completely over shadow their good qualities: they are nutrient dense, very filling, and HIGHLY ANTI-INFLAMMATORY!!! So, if you can manage the carbs, give carrots another look.

One serving of carrot juice, canned, gets a nearly perfect ND score (Nutrient Density) making it a perfect food to help with weight loss, and a 424 ANTI-INFLAMMATION FACTOR making it a great tool in the battle against pain and other effects of inflammation. CLICK HERE to see the results!

A serving of raw carrots, while still high on the ND scale which means they are VERY helpful in weight loss, ranks lower in ANTI-INFLAMMATORY qualities with a score of 209. That is STILL considered 'moderately anti-inflammatory', which is a great reason to munch and crunch a carrot or two if you suffer from pain, brain fog, or other effects of inflammation. CLICK HERE to see the results.

Informed Eating: Will it HELP?

2011-06-22T08:12:00.010-04:00

This past Winter has been, without a doubt, the most sedentary period in my life. I refuse to scold, chastise, or shame myself for being so inactive. Instead, I am choosing to offer myself compassion and understanding, kudos for making so much progress in the healing process, recognition for the positive things I have accomplished in my writing, the learning I have done, and give help to my body in undoing harm caused by inactivity. While I was not sedentary out of choice the repercussions to my health and wellness are undeniable:

In Retrospect; What We DO We STRENGTHEN

2011-06-12T08:17:00.008-04:00

I find myself in a very reflective state of mind these day, probably no doubt due to the fact that my oldest son will be graduating from High School on Wednesday and my youngest child will officially become a High School Senior. Lots of changes around here... and although my memories are scant and scattered my emotions are running strong and steady and reminding me that there is so much to grateful for in this life I am blessed to live.

This Lyme journey has taught me so many things about living well and I thought I'd take a moment to try and capture some of them...

The first that comes to mind....

Rebuilding

2011-06-08T06:03:00.006-04:00

After a very sedentary Winter my body is telling me that it wants to move. My body is telling me that it feels heavy. My body is telling me that it feels tight.

With 4 strong attempts at what I would call a "long haul" sort of walk, which is somehow different from the kind of walk one experiences while navigating the aisles of Walmart, from shampoos on the right to groceries a hundred miles to the left side of the store, stopping and starting along the way with a cart to lean on, I find myself rethinking the whole process. These excursions have felt GREAT .... while I was actually walking. Back on my path in the park the trees welcomed me and the creek bubbled its hello all along the way. However, after each outing without fail, my body has given me a very strong message and it wasn't happy or grateful or even in the slightest bit satisfied. It was in PAIN! Pain so intense that it forced me back into the sedentary life using a cane for any absolutely necessary excursions for days at a time.

My approach had been to treat the pain with ice or heat and ibuprofen and menthol and rest, and to seek out my wonderful Rosen Practioner to help me break that cycle of tension and then BAM I would go right back out there and do it again... all of it... walking, loving it, pain, and all the rest. Over and over again. What's the definition of insanity? I seem to recall it goes something like this: "Insanity is doing the same thing, over and over again, and expecting different results". Okay body. Message received, loud and clear - you don't like that approach... and by that definition it's a little insane! Time to stop pushing. Time to rething rebuilding. I realize that I have always approached any and all "work" in that way - in an all or nothing sort of fashion and this is so limiting. It cuts me off from the joy and peace (and success) that balance can bring. In another place and time I would have said "forget it then! No more walking excursions for me! I can take the hint!" But not today, and not here. Instead I am going to try a different angle. I am going to modify what I have been doing and bring about a DIFFERENT outcome. I am going to go back out on the path, wear better shoes, shorten my distance, and force myself to walk at a slower pace. I am going to remember that this body is precious and has been through a lot - that I shouldn't try to take too much even though it is willing to give now (in speed and distance), because recent history is telling me that I am just not ready - and in all likelihood my body will speak to me in pain if I try and take too much.

Pain is a great teacher, don't you think? It sure got MY attention reminding me, once again, that Rumi was right;

"Still, treat each guest honorably.
He may be clearing you out
For some new delight"

blessings!

Donna }I{

Stepping Back

2011-05-21T07:16:00.000-04:00

The last few months have been filled with challenges for me and my family as we learn to accept and cope with the latest diagnosis of lyme and coinfections. Seems that I've been stepping back from my advocacy, and suddenly the drive to write and even read has dropped away. I find myself working hard to maintain balance for myself and, from that, trying to create balance in the home for my family. Lyme is not just something that impacts the person who has it, but as with all chronic illnesses, there is a ripple effect that reaches out and touches every person in the house.

So, as I struggle to maintain some sort of equilibrium here it seems important to me to step back from writing, blogging, searching, and sharing. In addition, I feel a bit of conflict - as my thoughts have been so centered on my family in recent months it seems that every effort I have made to write has involved them in some way - their own experiences, our shared experiences, my interpretations and observations. I have become acutely aware that it is one thing for me to share about my own life as I experience it, but it is quite another to divulge about theirs.

Now is a time for resting.
Now is a time for allowing someone else to carry the banner.
I have let go of legislative efforts, meetings, and websites in the interest of picking up projects closer to the heart of my home, in the interest of healing.

Voices of Lyme: Who Me? An Activist?

2011-04-15T06:46:00.019-04:00

Funny how things work out when we end up making friends with the uninvited guests in our lives (see RUMI, main page). Things start to happen if we let them, and for me, looking back on my experiences since learning I had lyme disease and coinfections I have seen that I have become an activist of sorts. I'm not saying that I wouldn't rather still be a teacher, working with young children in the classroom - teaching them about mixing colors, reading stories, singing songs with guitar in hand, watching them grow, providing them with magical, fascinating, interesting and worthwhile experiences to explore in the classroom, listening to their voices and helping them stand strong. Lyme Disease took all of that way from me but evidently has left something in its place;

REVIEW: Guided Imagery for Living Well With Lyme by Glenda Cedarleaf

2011-04-11T08:59:00.004-04:00

It has been a week since I told you about the new audio CD by Glenda Cedarleaf, "Harnessing the Power of Intention; Living Well With Lyme". Since that time I have received my own copy in the mail and am thrilled to recommend this CD to you, wholeheartedly!

The CD contains 5 tracks, each effectively designed and presented with a particular purpose in mind:

Introduction
Belly Breathing
Healing Affirmations
Your Healing Journey, and
Sleep into Dreamtime

I found the imagery and affirmations to be very soothing and filled with powerful tools for healing. From learning the art of belly breathing to imagining your "pac man" cells gobbling up anything that brings harm to the body, there is nothing superfluous and not a moment wasted. Calling to awareness the many aspects of our physical self, emotional self, and spiritual self designed to promote healing and fight infection, Glenda gently urges the listener to use these existing resources so perfectly designed for healing.

Guided Imagery for Living With Lyme

2011-04-04T07:05:00.002-04:00

In January of 2010 I published a story titled "Imagining Lyme Disease" on my blog "Along the Way". My goal in writing and sharing this story was to bring people together and give a voice to those who share my experiences. I also hoped to express how valuable it would be, to me, to have guided imagery available for those of us facing this strange cluster of symptoms, infections, and the controversy that goes with them. I wondered how many others shared my interest in guided imagery and wanted such a program.

An Ounce of Prevention... or more!

2011-04-01T07:45:00.003-04:00

It seems like I haven't written in ages and ages! What a week I have had in my house! Two important issues have demanded my attention. Both required multiple visits to multiple doctors, teachers, and school personnel. I am exhausted and feeling some symptoms returning that I haven't had for a while, a sure signal to s-l-o-w d-o-w-n g-i-r-l . Things are looking up and hopefully next week will feel more normal.

I wrote recently about my tick anxiety with the onset of Spring. Thank you to those who commented privately and online. Some things have come to my attention since then that seem quite promising in the "prevention" department.

We all know that we cannot completely prevent the dreaded tick bite but, for those who are looking for ways to venture back into the outdoors while using some measures of protection, I hope that you can find something here that is helpful.

Spring Is Coming.... Yay and YIKES!

2011-03-15T18:43:00.000-04:00

This post is a bit different. I'm not feeling very inspired or profound or courageous. I have been feeling so much better the last few weeks and now, with Spring right around the corner, I am finding myself with more than a twinge of nerves. Spring is coming and I find myself afraid. Considering the potential for reinfection is real, and is increased should I venture back out into the garden, is something I need help with. Please help me. I need perspective. I need to believe what I am telling myself: "That I refuse to live life as a prisoner to the ticks"! Reinfection was something I never expected last year, and what a rough year I have had. I know I have tools for this... but where have I put them? So, I thought I would put it out there... is anyone else feeling like this? Does anyone have any suggestions for tick anxiety??? Posting some pictures that I took last Spring... wondering if I'll be able to convince myself to add to my collection this year.

I need to find a way...

A NOVEL Idea!

2011-03-14T07:47:00.005-04:00

Brandilyn Collins, best selling author of faith based Seatbelt Suspense thrillers, is getting ready to release the much awaited book "Over the Edge", a novel about Lyme Disease and the Lyme Wars. How many of us have pondered the question "what would it take for the medical community at large to finally accept the reality of this health crisis we face"? Brandilyn considered that very question during her own battle with Lyme Disease. She concluded that it would take a "whopping case of Lyme" and "Over the Edge" was conceived! The book is due out in May, Lyme Disease Awareness Month, but you can get a sneak peak on Forensics and Faith. I am anxious to get my hands on a copy and will be reviewing the book here as soon as I do. You can read an excerpt now, and see the extended trailer below! It will leave you on the edge of your seat. I can't wait to see how Brandylin resolves the plot in her always thought provoking, faith based fashion.

Voices of Lyme: Where There's a Will There's a Way!

2011-03-04T08:34:00.002-05:00

Today's "Voices of Lyme" story comes from L in Sacramento, CA who shows us the meaning of the expression "seize the day"! This entry is not meant to endorse particular products or retail centers but is shared to demonstrate how acts of sheer will and determination can make a huge difference in our progress in healing from this illness! Sometimes we have to sit quietly in those rough days and be ready to act within our means when a good day rolls along. Many of us are learning to focus on our food and nutrition as part of a more holistic healing plan and L offers her story in hopes that it might provide some hope and ideas for coping strategies for others. Thank you L for sharing your story and for being one of the "Voices of Lyme". Do you have a story you would like to share? Please send it to me at dzfalcone@gmail.com.

~blessings

donna }I{

Where There's a Will There's a Way!

I went 15 years undiagnosed with Lyme, and began tx 5 yrs ago, off and on – currently on.

The year before I was diagnosed, I opted to have a gastric bypass because I had put on over 100 pounds w/o any change in lifestyle except the stress of dealing with fatigue, memory loss and pain.

Because of the gastric bypass, and also a couple of problems that occurred during the surgery, I have a very hard time eating. (Yet I am still a fat lady). Between that and fatigue, there are times when I have lived on a few saltines and water. (And I managed to gain 20 pounds during a winter of such poor nutrition). Once I got back into treatment, I improved enough to see this was definitely adding to the problem. I thought I had tried every diet known, but one 3 a.m vigil I bought Michael Thurman’s 6 week body makeover. I carefully read up and started the program. In one month I lost 20 pounds and was feeling significantly better. However, I began having trouble swallowing some of the most important foods for my body type (chicken & rice). My esophagus would get a grain of rice or tiny piece of chicken stuck (due to a sliding hiatal hernia, I am told). It would be impossible to even sip water for several hours, once for a whole day. My doctor suggested many changes to my diet, and unfortunately I stopped loosing weight. But I have tried to keep to as many of the principles of it given the foods I can eat. At least I haven’t been gaining more.

The Thurman program includes cooking your own fresh foods to avoid additives. I think that is probably a really good thing for anyone chronically ill. The problem is, if you are too fatigued to get out of bed, it’s pretty dang hard to get started. But what I did was order the kit. It arrived, and I was too ill to care for a few days. Then I had a good day, and I used it to examine the kit, customize my plan, and make a grocery list. The next day I asked my hubby to get the groceries. I prepared a week’s worth of food, and froze 1/2 of it; so I was still able to eat when too fatigued to cook. As time went by, I started finding it easier on myself to just buy and eat micro greens as my main vegetable; because they just need to be washed and patted dry with a paper towel. I never got sick of the taste and they are fresh green food that is pleasant to eat. (Like I said before, not a big fan of most veggies). I found them at Trader Joes (and no, I don’t care to pitch that company either... It just happens to be the closest grocery store to me. I’m sure other markets have micro greens. For those unfamiliar with them, they are tiny little sprouts of different kinds of lettuce, grown hydroponically I suspect because they appear totally clean. Nevertheless I always wash them in a sieve).

I do recommend that diet for anyone struggling with Lyme and obesity. The only real challenge is that you need to prepare food ahead of time, but if you can brave it a few days you will begin to get increasing energy. The diet works with or without exercise.

If there is anyone in my situation post gastric bypass, I have come up with a few coping strategies. I get a good quality protein powder (my mom gets it at Costco for $28 a v/large container... And worth every penny).

I started out mixing this with orange juice and frozen fruit; but after doing the Thurman program, I stopped using fruit juice. I use a pure vegetable juice from Trader Joes. This is not the spirulina type of green drink. It’s 100% vegetable juice. I am happy to mix that with the protein powder and nothing else, but it’s tastier and more attractive with the addition of frozen blueberries, peaches, raspberries.

The green drink powders are a good thing too, but I feel like I get more benefit from the pure vegetable juice. Like many people, I can’t get excited about making or eating veggies. So this helps a lot.

If I can help anyone with some coping strategies, that is a good thing!

L in Sacramento, CA

Voices of Lyme: Rosen Therapy, Chronic Pain, and Lyme

2011-02-25T07:11:00.003-05:00

By way of follow up to my post on Thursday, "I Am Not Lyme", I am posting an entry from my other online journal, Along The Way, written 13 months ago about my experience with Rosen Method Bodywork. Rosen, for me, has served as a path back to connection with my emotions and my SELF through my body. In addition to the emotional healing (or, to be more accurate I should say inextricably linked to the emotional healing) I have found that Rosen treatments greatly reduce my physical pain by identifying and helping me to release areas of tension in the body. In addition, I have developed a new, more patient mindset for allowing the pain to be there without escalating my discomfort by fighting with it.

~blessings

donna }I{

Rosen Therapy, Chronic Pain, and Lyme

What I have learned is that chronic physical pain is self perpetuating. The constant presence of pain can create more pain... it increases tension in the body which for me is a sort of "BRACE" against the pain. I have been "on guard". After dozens of years "ON GUARD" my body was in a constant state of tension and pain. It was never so clear to me as when my neurologist tried to read an MRI of my brain with me in the room... it was the side view and he had trouble orienting himself b/c something was out of whack structurally.... he chuckled and said "OH... those are your shoulders WAY UP THERE.... usually they are way down here". Wow. My husband has always told me that I hold my shoulders in a clench but this was undeniable proof. I could see it with my own eyes. I started noticing this clenched state more and more, and was so frustrated by it because nothing I could do seemed to release the tension for more than a few minutes. The ever present pain in my shoulders, upper back, and neck was not only uncomfortable, but I became angry with it. Oh well, I was angry with most of my body so why would that even surprise me?

Rosen Method Bodywork employs the power of touch to ease a wide spectrum of pain and tension, and this is a small accounting of how this work is changing my life and my pain.

I started seeing a Rosen practitioner a few months ago and let me tell you that nothing could have prepared me for the shock of seeing my neck again!!! I noticed a contour the other day and it felt so odd to me... then I realized it's the way the nape of the neck feels and looks naturally. And yesterday, in session, my wonderful Rosen practitioner commented that her hands didn't used to 'fit' there on my neck. All I could do was smile and tell her that I, too, had noticed my neck the other day - how different it looked and felt. So, the point is that while I still experience a lot of lyme pain, the layers of locked up tension and muscle pain are lifting and parts of me feel so much better. While we do this work, this Rosen work, I can feel myself befriending my body. While we do this work, I can feel myself befriending my self. Old emotional pain, long buried and denied, is also coming up for recognition and release. It's sort of like a "roll call" when hurts long forgotten by my mind, disregarded and buried deep, are raising their hands and saying "here I am"... and after we greet each other they seem to float away.

As my body is becoming more relaxed, so is my heart and so is my mind and I notice joyful moments coming back into my life. It's all connected. A few months ago I was so depressed and sad that I felt certain everything good that would ever happen to me has already happened and now I am just biding my time. I believed that to my core, almost.... but I wanted my smile back and just THAT, in and of itself, was so important because hope lives in little wishes like that.

I have a wonderful therapist who has been helping me through these challenges and she is the one who told me about Rosen - about how a new intern had joined the practice and about how she can help with release of pain...with long held emotional pain and with physical pain held in the body. My experience has taught me to be open to these sorts of "hints", especially from her, so I made an appointment not knowing what to expect. Hope lead me to try "one more thing"! I am so glad I did. My life is changing. I still have pain, but I also am finding those moments of joy, I smile more, I laugh more, and I am beginning to feel like me sometimes. Chronic pain hides many secrets inside your body... all of those years of carrying on and hiding the pain takes its toll. It creates a burden all it's own, adding a new layer to the pain. When you can find a way to release that burden a very heavy layer lifts.

I still have lyme disease. I still have moments when I wonder if I am up to the challenge of healing. I still feel angry at times and sad at times and depressed at times. But, I think the biggest thing that has happened to me as a result of Rosen is that now I know my body belongs to ME, my healing belongs to me, and my state of mind belongs to me... not lyme disease and not anyone who has hurt me in the past or who may hurt me in the future. Me. There is a lot of freedom in that. There is a lot of power in that.

To learn more about Rosen Method Body Work and how to find a practitioner in your area, click here.

I Am Not Lyme

2011-02-22T19:44:00.004-05:00

This may come as no surprise to you, but it was a huge revelation for me... I will even go as far as to say it was an epiphany that left me with tears streaming down my face as I motored along in my car today. I am not lyme disease.

It all started with a Rosen Method Bodywork session this morning. It has been six weeks since my last session. Today was the big day my practitioner was allowed back to work by her doctor after some foot surgery about a month ago! I was elated to be returning!! Now, if you don't know much about Rosen it's a hard thing to summarize and it would distract me from what I want to share today, but I will provide this video to you to fill you in a little bit about Rosen. I'll write more at a later date on the topic:

It was a wonderful session for me and as I was preparing to leave, still on the table in fact, I stretched my arms out above me feeling so peaceful and content. My arms suddenly looked very different to me... and I reached out to touch my own skin in a way that was compassionate and appreciative and I thought about my body "I am more than a storage container for lyme disease... much more". That was sort of the end of it for a while and as I traveled home from my errands, still peaceful and even pain free, I heard that little voice in my head whisper "if you are more than a bag of borrelia, a sack of spirochetes, a breeding ground for bartonella... what ARE you?" and in record time I answered myself, first quietly and then out loud "everything... I am EVERYTHING ELSE!"

In that moment I felt connected to the universe in a way that I never had known before... in a way that I can't really describe here, but still wanted to try. I cried silent joyful tears all the way home. I suddenly knew what it felt like to know that I am not my body... I am not my disease... I am so much more. I felt like my skin was merely an illusory boundary. I felt fearless. For the first time in my life I felt pure fearlessness. I'm not sure how long the feeling will last but the way I look at it once you've known fearlessness there is always a path back to it...

Gluten Free Pasta and Asparagus Toss!

2011-02-19T08:02:00.002-05:00

Here is a yummy, quick and easy, gluten free pasta entree that you might enjoy. I love pasta and really miss the semolina wheat varieties, but honestly there are so many GF options out there it is becoming easier and easier to let that go. I have tried several and the newest wonderful GF pasta I have found is called "Mrs. Leepers Rice Vegetable Twist". This pasta is GF, Wheat Free, and Casein Free, cooks up firm, and tastes great tossed in alfredo sauce with asparagus! Give it a try and let me know how you like it, how you tweaked it, and what you like to do with GF pasta!

One of my favorite things about this dish is that I discovered the pasta and the asparagus have the same cooking time... so why dirty two pots? As Rachel Ray says "Everybody Into the Pool"! My LLMD's wonderful nurse tells me that Asparagus is a great natural detoxing vegetable, so I use it every chance I get.

Ingredients:

12 oz bag Mrs Leepers Rice Vegetable twist pasta (gluten free/wheat free/casein free)

Asparagus (about a pound, fresh), cut into pene style pieces

Jar of your favorite Creamy Sauce. Alfredo or Cheddar is recommended.

Rinse and cut asparagus

When water is boiling, as directed on pasta package, add asparagus and pasta together. Cook as directed.

While they cook, prepare your sauce.

When the pasta is done, so is the asparagus. Drain and rinse gently.

Place pasta veggie mix in a large bowl.

Pour sauce over the top.

Serve. Great with a tossed green salad.

~blessings, and happy cooking!

donna }I{

The Heart Holds On.....

2011-02-14T10:14:00.026-05:00

Yesterday was Valentine's Day... a day that brings all sorts of thoughts and people and memories to mind... thoughts of true love and family; of friends new and old, online or in person; of sweet memories filled with loved ones who have gone on ahead of me, who have moved away, who I have lost touch with; thoughts of cardboard valentine boxes and little candy hearts with messages inscribed. I'd like to share this poem with you, in gratitude for the miracle that we call the internet... the connections it fosters... the companionship and sharing engendered... who would have ever imagined the "pen pal" tradition of yesteryear would have evolved into such instantaneous exchanges?

~Blessings

Donna }I{

the heart holds on

donna 11/24/2009

memories fade

as time rolls by

minutes to days to years

how they fly

slipping through fingers

like sand on the shore

hands feeling empty

once more

but the heart holds on

forever it seems

to a strong sacred bond

that we visit in dreams

the heart holds on

even as time rolls by

and it carries us home

in the blink of an eye

Voices of Lyme: Hope...the Secret Your Heart Knows

2011-02-12T05:46:00.008-05:00

Good morning. I hope that you are doing well, finding peace, and collecting butterfly kisses every day... don't forget to notice the butterfly kisses; the moments you are so glad you got to have!

Sometimes I like to look back at my old writing to remember where I was - this helps me to see how far I've come. The following piece was written at the end of January, 2010, just over one year ago. My recovery has been very slow since then due to a new bite, bartonella, and the cessation of aggressive treatment due to allergies. This piece was written as my symptoms were returning last year when treatment was temporarily stopped. This new infection has made us bring out the 'big guns' again, and they seem to be working! I feel encouraged by less leg pain, and the herxing seems to tell me that there is considerable die off. The really good news is that, so far, the herxing is getting less each time. Lyme forces me to keep looking at, and redefining, hope for myself. This was one of those times. It's kind of long. I hope you like it.

Blessings~

Donna }I{

My Heart is Growing Even as it is Breaking - Gifts of Lyme
by Donna Falcone ~ January 2010

I don't remember being like this, ever. I don't remember being a sulky, whiny person EVER. In fact, I have always been just the opposite! I have always been the one to face any challenge with a smile and with a list of possible solutions to problems or positive ways to look at things. I NEVER even imagined I would be this way. I never believed in "insurmountable", yet here I am feeling as though the world has come to an end. If I were to be completely honest I guess that's how I feel and in my MIND I could give you a million reasons why that's wrong, but in my heart I just feel that way. There is a part of my heart that whispers "don't believe it" and I hold onto that. That must be where hope lives. Hope must be the secret your heart knows. Faith must live in the hope, providing a glimmer in the dark... a beacon that proves there is something on the other side. Faith gives importance to the whisper.

The puzzler in me wants to understand.

Maybe this is in large part due to the lyme disease... the lack of medication and the resurgence of symptoms has obviously unlocked the door to my brain and the spirochetes are "creepin in", wreaking havoc with the progress I have made and turning me into a complete stranger to myself. The only thing I can think to do is just to keep on taking steps forward even though I have little faith that they will amount to anything but what else is there? So, I submit things I write. So, I reach out for volunteer projects. So, I look for on-line work that I don't even know I can do or not. To walk forward, even though I can't seem to stop the tears some days, is behaving like the world will go on even though I don't feel like it will.

Maybe this is all of those years of not feeling my feelings and I am finally allowing them to flow, and there is such a build up it's just going to take a while. Maybe while I was "being the one" to hold it together I was just brilliant at avoiding my own pain and so I made life look easy. I guess these things were bound to catch up with me. I feel like there is a gaping nasty hole... that I am blown wide open and bleeding inside and now I just have to let the air get at it so the healing can be happen. There's a song like that .... Paul Simon ... He sings "losing love is like a window in your heart... everybody sees you're blown apart... everybody sees the wind blow...." I feel blown apart. Okay. I guess rather than trying to run away from that feeling by 'fixing' it somehow I need to just see what being blown apart feels like... allow it.... look at the ugliness of it and accept it with compassion. Practice giving to myself. I waffle between allowing myself my feelings with compassion and feeling so ashamed. I want to have a positive attitude. I want to be "the one" who has it all together again. Truth is, sometimes I am and sometimes I'm not. AND sometimes I'm both.... sometimes I can face anything but with the added element of uncontrollable emotion... floodgates open. I don't think I'm wallowing really, although to some it may look that way. I am practicing feeling. I am practicing authenticity. It feels very foreign to me. I admit I have my moments of self pity... which also carries new realizations for me, most of which have to do with this: if I can allow myself to feel sorry for the pain others feel, maybe there is something to be gained in allowing this same feeling toward myself.

I'm reading from Pema Chodron and she says that as we come to really see and then embrace who we are completely... our own pain, sadness, temper, emotions... all of it with compassion... we come to also embrace the whole of humanity in a very authentic way... we can truly understand someone else's pain when we have stood face to face with our own... that this is part of what pain does... it helps us to see. All of our pain is the same. The more I feel, the more I can 'see' others. When I close my eyes to my own heart and the sore spots, I close my heart to the opportunity of deeply seeing others as well.

I can say that my heart is growing, even as it is breaking. Maybe it is growing because it is breaking... and maybe breaking isn't the right word as it implies damage... but really it is becoming softened... like the hull of a seed, when it softens the kernel inside may indeed become more vulnerable, but this is the only way that it can grow into full beauty... through this vulnerability is the only way it can sprout and grow and bloom and then re-seed.... Someone once asked me to think about where I would be without Lyme Disease. I think maybe I would be still walled off from myself. I know I would. Do I like and enjoy Lyme Disease? I would be lying if I said I did. Would I trade back for a pain free life? No. There is no such thing. If it weren't for Lyme Disease I think I would still be living deep inside a lie.

One Month Anniversary!!!

2011-02-07T15:30:00.003-05:00

Happy Anniversary to the Brighter Side!!! Hard to believe the site and blog are one month old already!!! Things are off to a good start and I wanted to share some reviews that have come in at the end of January!

It seems that the Brighter Side has an appeal to those recovering from issues unrelated to Lyme Disease and Tick Borne Illness. Bette Baptist, Certified Rosen Practioner, spent some time on the pages (blog and main site) while forced to keep a boo boo foot up for a time and this is what Bette has to say about The Brighter Side blog and main site:

i had to write to tell you how much fun i've been having
on your ' lighter side . .' site all day today.

as a convalescent, i am learning about how to occupy
my time without the structure of a schedule and the demands
of a full and part time job.

your site has proven to be fun, uplifting, informative,
light-hearted and delightfully easy to navigate when
i'm not quite up to hassling with difficult and frustrating
tasks.

i must say that your personal spirit of overcoming adversity through
living joyfully and with a light heart is contagious.
today has been long but pleasant and relaxing thanks to your site.

although incapacitated,
i read, laughed, did puzzles, watched videos, read recipes and had
myself a lovely time soaking up your creativity, resourceful ideas, humor
and glorious approach to recovery.

thank you, donna.
i will spread the word about you, your recovery, your loving service to others
and the beauty in learning to heal by living fully, no matter what.

Thank you, Bette, for your wonderful review and feedback! For a bit about how Rosen Method Bodywork has helped me manage and heal please CLICK HERE to read about how Rosen has helped me with Chronic Pain. If you are interested in seeking a Rosen Method Practitioner in your area you will find resources on Bette's page: CLICK HERE .

The Brighter Side also received a "shout out" from Belleruth Naparstek of Health Journeys (CLICK HERE)! Belleruth writes:

For those of you dealing with Lyme Disease, I want you to know about Donna Falcone’s new project - a website called Brighter Side: Living with Lyme. She says it’s a work in progress, but already it’s loaded with suggestions, resources and tons of support for those dealing with this frustrating condition, not to mention the providers who don’t believe it exists!

She writes, “My purpose in publishing "The Brighter Side: Living with Lyme" is to provide tools for daily living that may give guidance for reclaiming our power over this illness. I say "our power" because I am in it with you, up to my eyeballs in lyme disease, bartonella, babesia, and all of the life changes that go with them. We are literally in this together. I hope that you find ideas and tools that work for you, and that you will share your own with the rest of us.”

Thank you, Belleruth, for your words of support and much appreciated shout out! Please visit Belleruth's page to learn more about the impressive and far reaching success of Guided Imagery in helping with healing across a variety of conditions (CLICK HERE). For a list of the Imagery and Meditation audios which have been useful to me, personally, please visit the page "Inner Life" on the main site. For a full list of Belleruth's powerful work as well as imagery and books from a variety of others visit Health Journey's website.

Please make sure to visit the main site frequently as it is updated several times a week! The updates are listed on the home page, by date, to make it easier for you to find what's new! There are videos, resources, stories, songs, poems, recipes, and much more in the works! To visit The Brighter Side: Living With Lyme main site CLICK HERE!

Thank you for reading, for sharing, and for being a part of this new and exciting project!

Blessings....

Donna }I{

Voices of Lyme: Seeking Balance

2011-02-05T08:24:00.013-05:00

The following is an excerpt from Renee's Reflections, written originally on January 29, 2010. You can access the original post by clicking on the title. Renee always has so much to offer in her perspective, her humor, and her authenticity. Please give her page a look if you haven't already... you'll find many nuggets there! You might also enjoy and find inspiration in her interview in Life Skills Magazine, "Discovering Purpose" (http://issuu.com/discoveringpurpose/docs/bloggerinterviews?mode=embed&layout=http://skin.issuu.com/v/light/layout.xml) Thank you, Renee, for sharing your story with us on "The Brighter Side"!

Blessings

~ donna }I{

Partners In Lyme: Seeking Balance

by Renee Dahlen

On Monday I wrote a post about my struggle lately with discouragement and depression. I felt some guilt over my inability to keep a positive attitude, and found myself searching for guidance as I wrestled with myself. In the post I wrote, I spoke briefly of having acceptance and hope, which I believe is key to finding the balance I desire in my life.

Yesterday I read about an interview with Admiral James Stockdale, who was a prisoner-of-war in Viet Nam for 8 years. Max Lucado writes of the interview that Jim Collins had with the Admiral in his book Fearless. Collins asks him how in the world he survived 8 years in a prisoner-of-war camp. Here is the Admiral's response.

"I never lost faith in the end of the story. I never doubted, not only that I would get out, but also that I would prevail in the end, and turn the experience into a defining event in my life, which is retrospect, I would not trade."

When Collins asked him who did not make it out, he gave this reply:

"Oh, that is easy, the optimists...they were the ones who said, 'We will be home by Christmas'....and then Christmas came and went. They said, 'We will be home by Easter....and then Easter came and went. And then Thanksgiving...and then Christmas again. And they died of a broken heart. "

Lucado goes on to say, "Real courage embraces the twin realities of the current difficulty and the ultimate triumph. Yes, life stinks. But it won't stink forever. As one of my friends, likes to say, 'Everything will work out in the end. And if it has not all worked out, it is not the end.'"

This REALLY spoke to me, and affirmed to me that when times are tough we do need to be realistic, but at the same time we need to look ahead and believe with all our hearts that there is hope for change. We may not "get out" of our chronic illnesses, as Stockdale got out of the camp, but then again......we may. We cannot get stuck in "life stinks" and neither can we live in denial about our circumstances. Living in the moment and what it brings....while seeking a better tomorrow. Optimism laced with reality. Balance...Balance...

Today I am still weak, exhausted, sad, and counting bumps on my 1970's ceiling. Joel is still weak and exhausted, struggling to work and take care of me. Yesterday we ate cereal for breakfast, eggs for lunch and cereal for supper because neither of us had the energy to cook. So it goes. Life kind of stinks right now, but it "stinks" less than yesterday. There in lies the hope.

My 92 year old MIL has come to the conclusion that if Joel and I just believe enough, we will be healed. She is an avid watcher of Joel Osteen, which in and of itself is a complete turn around of her 90 years as a Scandinavian Lutheran. She wants us to get well so much...and she keeps telling us, "You just have to believe!" Out of deep respect for her at this time in her life, we listen. But there is more than just believing. There is acceptance. This is where I am today because this is where I am today....not forever, but for today. Acknowledge it, step back and observe it, and hang on to every thread of hope while you walk through it.

I see this kind of living in you bloggers I visit and who graciously visit me. I don't think we will die of broken hearts. We know that there are moments and even days when life stinks.....but we also know that it won't stink forever! Through it all, we live with courage, even if we are eating breakfast three times a day!

the color of strength

2011-02-04T16:46:00.003-05:00

if strength had a color
what would it be?
blue like a river?
green like a tree?

clear as the tears
leaving tracks on a face?
if strength had a color
would i bear a trace?

Ever feel that way? I often feel tired, discouraged, weepy, weak... but my husband tells me that I am the strongest person he knows. I don't ask him... he just tells me. I need to hear these words now and again because it helps me to realize that being strong and feeling strong aren't always the same thing. Sometimes our human-ness entices us into doubt, but just because one doubts the color of the sky doesn't mean it is any less blue. I know I am strong enough to do what I need to do, even if what I need to do is to have a very quiet day, under the blankets, napping at will. Sometimes it takes strength to know when it's time to rest.

blessings

~Donna }I{

Garbanzo Goodness! A Gluten Free Snack Idea

2011-02-03T10:57:00.005-05:00

Here is a great snack to satisfy that salty, crunchy yummy craving!!! It's so simple you'll want to share this one (or maybe not... maybe let them think you worked long and hard to create this delectable treat)!

Oven Roasted Garbanzo Beans:

What you will need:
2 cans of garbanzo beans (AKA Chick Peas)
2-3 T olive oil
Salt and Seasonings of your choice

Preheat oven to 350 F (or don't... the beans don't care!).
Drain, rinse, and gently pat the beans dry.
Place in shallow baking pan.
Drizzle with Olive Oil and gently stir to distribute evenly (I use my own clean hands for this).
Season as you like... I use salt, herb blend, and a garlic seasoning. Gently stir, again, to evenly coat beans.

Bake in 350 F oven for about 30-40 minutes... checking every 10 minutes. Give the pan a little shake to keep the beans from sticking and burning on the bottom. They are hard to stir, but very exciting when they roll across the floor. For this reason I have taken to simply gently shaking the pan.

Beans are done when they are dark brown and have decreased in size by about half.
Once cool store in a paper bag (if they last that long). Storing in plastic or other air tight container may cause them to lose their crispiness.

These beans are great for munching much like you would nuts. My doctor has forbidden all peanut products for me for reasons related to Bartonella which I do not fully understand.. but I obey because he hasn't steered me wrong so far... but I miss the crunchy snack I could count on for a quick protien boost. This is a nice substitute... nice when we can find alternatives that satisfy. They are also great on a tossed salad instead of croutons.

Try different beans... black eyed peas are delicious, and black beans are tiny but yummy!
Get creative! This is a nutrition packed, low fat, gluten free munchy!!!

For inquiring minds: to view nutritional facts on garbanzo beans CLICK HERE.

Voices of Lyme: The Cloaked Stranger

2011-01-28T07:46:00.007-05:00

Earlier in the week (on Learning From the Clouds) I mentioned a favorite poem of mine, written by the philosopher Mowlana Jalauddin Rumi, entitled "The Guest House". Until very recently I had never seen this poem in its entirety but had heard it described to me about three years ago by a very important member of my healing team (which is what I call all of the Angels in my life who are helping me to thrive in spite of, and sometimes because of, my illness). It was prior to my official, yet expected, diagnosis and I was experiencing very intense symptoms of widespread pain, cognitive dysfunction, anxiety, and depression - she said to me "I know this is hard to believe right now, but there is never a stranger who knocks at our door that does not come bearing a gift". I sure could not wrap my mind around that. I wanted to believe her... to have faith that even this very dark period in my life would not be in vain... something good and maybe even spectacular would come from it. But, I was at a loss... I couldn't see it. I wanted to believe her, but I couldn't imagine how this could be. Without my realizing it my mind filed it away (as is often the case) for a time when I was ready to understand. That time came nearly a full year later and I was inspired to write a story: The Cloaked Stranger. I hope you enjoy it and that it hold some meaning for you.

Blessings~

Donna }I{

Someone once told me that every challenge comes bearing a gift. “How can that be?” I asked myself. “What gift could possibly come from Lyme Disease?” Still, trusting her need to tell me this, I tucked it away inside, taking it out every now and then to look at. Yesterday it popped into my mind in the form of a cloaked stranger.

Neither male nor female, this figure wears a heavy woolen cloak wrapped around its form and a gray woolen hood covers its head. Holding one arm securely inside the cloak it reaches with the other arm to knock and knock and knock at my door. This is Lyme Disease. My Challenge. Always there with that persistent knocking. Always there with a gray woolen darkness. I feel its cold coming right through my door and there is no escaping its presence. How many times I have opened the door and tried to overtake this cloaked stranger! I have tried to reason with it. I have tried to battle with it. I have told it to just go away and leave me, yet the knocking continues until the sound of it rattles my brain and shakes my confidence to the core. Once again I opened the door to finally dispel its presence from my life. I told it that I had had enough, and that I resented it being here! I told it that I wanted my life to be as it was! I told it to go away! I noticed its arm hidden beneath the cloak and I wondered why it never moved. What was it hiding? A weapon? Something to make matters worse? Something to finish me off? As if my thoughts had been heard it slowly brought the arm forward, extended toward me with an open hand. There rested a beautifully wrapped gift with a tag that read "open when ready". I took the gift and looked at the visitor, asking myself "Ready. Am I?" It nodded, again responding to my thoughts. I slowly untied the ribbon and lifted the lid. Nestled safely inside the box was a delicate mirror. “A mirror?” I thought to myself. “That’s an odd gift.” The stranger nodded. I slowly raised it to my eyes and there, in the mirror, I saw a miracle! It was my soul, radiant and steady, unmarked by pain, unscathed by this challenge, fiery bright and beautiful, so beautiful... namaste indeed... the God in me has been there all along. I closed my eyes and breathed in deeply, drawing it towards my center, knowing full well that my visitor had indeed brought me a gift. When I opened my eyes the cloaked stranger was gone.

I’m quite sure my visitor will return with more challenges to give, more gifts to reveal. I pray to welcome whatever it brings and that I will always trust in the gift. I pray that I will always remember this miracle knowing, in its own time, each challenge will reveal a treasure.

Learning from the Clouds

2011-01-22T08:37:00.003-05:00

I was reading the words of an online friend, Renee (Renee's Reflections - please stop by and give her page a look... you'll be glad you did). My gratitude for her sharing is beyond measure. Today Renee spoke of "Foot Stomping" and the frustration that comes with chronic illness, seeing other people get better, genuinely celebrating their return to health yet simultaneously wondering when it will be OUR turn... wondering if it will EVER be our turn... and then the judging of ourselves when we recognize these as unflattering or maybe even undesirable emotions. For me, the judgment is harsh...so harsh.

I try to maintain a positive outlook, and sometimes I think I confuse that with keeping a cheerful outlook. One thing that Lyme Disease is teaching me is that sometimes the former has nothing to do with the latter. Sometimes positive and cheerful are miles apart. Sometimes I am POSITIVE that I just do not feel CHEERFUL in the least, and I find it difficult to accept these feelings that rob me of my cheer. Humanity and emotions are a package deal and, if I look at it that way, it seems to make some sort of sense that emotions (in and of themselves) are not good, desirable, bad, evil, sinful, or measures of character. Emotions are the body's response to life. Emotions are the messages coming from within, spoken in the language of the body directly to the heart and sometimes they can catch us by surprise but always they are there for a reason. They are there to teach us something, but never to teach us that we should feel shame for having them in the first place. Emotions come from a place we do not control, so there is no use pretending that we do.

Seeking control over our emotions would be like asking the sky to control when it rains; it cannot. The sky, however, allows the rain to fall and then accepts its emptiness of rain moving instantly, without a thought of holding it one moment longer, into the next phase of sunshine. THIS is where I am not a cloud. I hold on to the memory of the rain... the smell and the taste and the heaviness of it... the thunderous, panic stricken experience of it. After the rain passes I find myself still thinking about it; wondering where it came from, why it came at all, and can it be prevented in the future. But, as we all know with clouds, we cannot prevent the rain nor should we try. We need it. Rain cleanses. Rain nourishes. Rain waters seeds. I suppose the question becomes not about whether we "should" feel one way or another, but are we able to just simply feel it, forgive ourselves, and let it go? It might seem strange to suggest forgiveness here, but I think that's what it comes down to for me... of course, not for the happy, generous, light hearted, joyful feelings but rather the jealous, angry, frightened, pitiful feelings that carry with them a shame unspoken and insidious.

Our human emotions are a part of who we are, we didn't invent them, and we certainly can't control when they emerge and in what form. Lyme has given me lots of time to "stew in my own juices" as the saying goes. When I was more active there was not time to stop and contemplate such important topics. I had children to raise, work to complete, groceries to buy, meals to cook, laundry to wash. Who had time to even NOTICE the tap tap tapping of the self? I would have to say that this is one of the gifts of my house guest, Lyme Disease (if you haven't read "The Guest House" by Rumi, now might be a good time to plan on it. It's a quick read, and well illuminates what I am trying to say here. It can be found on the main site; click here).

Reflecting back to Renee's words, she spoke of her stomping becoming a dance!! I think that is beautiful, and so delicious!!! Dance is an art, and art is expression; expression of the real! What a wonderful metaphor for our inner lives... especially the highly charged energetic feelings that cause us to stomp our saddle shoes! Yes, a dance indeed!

May we grant ourselves permission to embrace our own dance, to permit the transformation from anger to joy as easily as a cloud drops it's rain... We don't judge a cloud for doing what it does. May we grant ourselves the same freedom. May we learn to be more like the clouds!

blessings,

Donna }I{

Voices of Lyme: Movin' and a Groovin' with Linda Olley, RN

2011-01-21T07:53:00.007-05:00

Hello and welcome to The Brighter Side Blog! Today is Friday and time for more introductions! Meet Voices of Lyme contributor Linda Olley RN and discover, among other things, her special good M O R N I N G intentions!

Through the Eyes of Illness: Lyme disease

Twenty-Six years ago, a mysterious invasion of my body (the body snatcher) occurred without advance notice or permission! What was this “monster?” Enjoying perfect health until age 40, the intruder struck like a bolt of lightening in a thunderous storm. Unable to lift my head off of the pillow one morning, feeling like it was in a pressure cooker about to explode, along with a sore throat, chills, fever of 103- I asked, “What was happening to me”? My family Doctor made a house call, and prescribed 12 days of antibiotics. At the completion of the course of antibiotics, this dark force left as rapidly as it struck- or so I thought! I learned health couldn’t be bought or brought, borrowed or stolen without knowledge, change, and power- hour by hour! Maybe regained, but definitely not the same.

Three months later, I began with upper and lower extremity arthralgias, causing discontent in my otherwise gratifying life, with little strife. Fast forwarding many years, the progression of this invader causing insomnia, muscle twitching, myalgias, neuropathies, continued joint and muscle pain, eye pain and inflammation, fasciculations of the eye lid, mood swings, migraine headaches, unrelenting fatigue- I literally thought I was dying. (I even procured an additional life insurance policy) No Doctors were able to diagnose this intruder, but my Rheumatologist labeled the uninvited guest- “Atypical Rheumatoid Arthritis”, in the absence of any tests confirming positive results that would conclusively affirm the “thief” that was robbing me of my peace! No one listened to me, after 100 tick bites over 22 years at our summer haven in the woods, with azure skies, cumulous clouds, crimson sunsets, moonlit nights that glimmered on the water like diamonds, and wildlife: opossums, raccoons, squirrels, snakes, lizards, spiders, deer, and ticks- lots and lots of ticks. After much research, I was determined as a professional to discern my own diagnosis AND- I discovered it only takes one infected tick to do the nasty trick.

(Well- pardon me, but I had more than 100 infestations- I guess I must have been yummy to their tummy) What other diseases did they transmit that gave me such a traumatic KICK? Why didn’t my Doctor’s listen to me? I lived inside this broken, painful body they now call the incredible “bionic woman.” I shared repeatedly that I thought I had Lyme disease. Response: “You don’t because you tested negative.” Sound familiar? Well, I tested negative for RA, Lupus, and all other diseases, but I was treated with harsh drugs for 20 years for a disease that did not please, was not present, but Doctor’s thought I had. NEWS: It certainly was no “present.” Finally, armed and dangerous with my “noggin” full of knowledge, I made an appointment with a Lyme literate MD, and treatment was initiated immediately, with a clinical diagnosis of Lyme and other TBD’s.

From 1984-2010, I required 13 joint related surgeries, to include four total hip replacements (2 on each side when the first ones failed after six years), a total knee replacement (L) and a ® knee replacement scheduled for Feb. 1^st of 2011. Why? Late stage, advanced Neurolyme disease with severe arthritis caused by one or more infected ticks that destroyed all my joints, diagnostically confirmed by MRI’s. No etiology unknown in my case- but this miserable bacterial infection difficult to cure, for sure. What did I do? I grieved, as any normal person would do, not for months, but for years. (Denial, anger, bargaining, depression and finally- acceptance of what is, not what I want it to be.). This uninvited guest provoked me and I certainly was not at my best, until----.

While waiting to miraculously become well and whole again, I made a conscious choice to no longer be the victim, but become the victor. “There are times when I have to hurt through a situation and when this happens, the choice is not whether to hurt or not to hurt, but what to do while I am hurting.” I stopped asking “why me” and started asking: “I’ve got this, now what am I going to do with “IT”? “How may I use this illness to transform my life and the lives of others”?

Enter: Transformation. Turning a stumbling block into a steppingstone, a difficulty into an opportunity, a pity party into a praise party, and no longer being a “blooper” (my neologism for a dump) but becoming a “trooper!” I created my own “new normal”- one that was realistic, achievable, and manageable. I am my own designer original, and you can be too. I became a “wounded healer” and was a parish nurse at my church for 16 wonderful years, though challenges continue. My focus: Gratitude on what I am still able to do, not on what I can’t! After leaving this ministry in November of 2010, I had a persistent nudge to use my knowledge as a professional, and as a lyme sufferer, initiating the first Harrisburg Area Lyme Disease Support Group. When my mind is “made up,” I don’t give up! From the direction of the “blue horizon” and beyond, I have become a motivational speaker, I have published 3 books, and I will keep “movin” and “groovin.” As long as I remain an earth resident, this is my plan: I will live fully, I will love unconditionally, I will laugh passionately, and I will learn purposefully. Laughter “is the brush that sweeps away the cobwebs of the heart.” (Mort Walker) I will do my part!!!

We have a choice in the morning to awaken and say: “Oh, God, it’s morning.” Or, we can awaken and say: “Good morning, God.” Allow the word morning to remind you of important choices each letter portrays: M= aximize. 0=pportunity. R=estoration. N=ormal. (Create your own new normal) I=magine. N=Notable (rise to your challenges and create a new purpose for your life) G= grace, goodness and gratitude. What a way to start your day. Let each ray of sunshine find it’s way to your heart and home- TODAY! May it’s warmth give you help and hope for better today’s and brighter tomorrow’s, while lessening your sorrows. Blessings. Linda Olley, RN, Lyme Sufferer

Linda Olley facilitates the Harrisburg Area Lyme Disease Support Group. They meet the third Tuesday of every month from 7-8:30PM at Country Meadows, West Shore, 4833 Trindle Road, Mechanicsburg, Pa. (Building #5) Meetings are free and all are welcome to attend. Linda has just recently published her third book: Holy Hunches, found online at: www.essencebookstore.com in the "Inspiration" section.

"Holy Hunches describes the author's life experiences and the prodigious incidents that have confirmed to her that God is alive and well, walking beside her as her constant traveling companion, and increasing her fortitude. This is a book about life, the desirable and the undesirable. It involves change, challenge, pain, suffering, grief and loss, but it provides unending hope, assuring us that there is no hopeless end. The author's life lessons have nurtured her deep personal relationships with God, which contributed to the discovery or her authentic self. The tapestry of her life is honestly and truthfully woven throughout the book in an optimistic way that will prayerfully brighten your day. "

Linda's story can also be found on our main sight in the Voices of Lyme section. Please share her story with others who might find inspiration there! If you have a story you would like to share please submit to dzfalcone@gmail.com.

Blessings,

Donna }I{

BRAIN Food (or... The Joy of Puzzles and Games!)

2011-01-20T17:31:00.000-05:00

I have always loved puzzles. As a young child I used to love setting up a big jigsaw puzzle and working on it for days! As I grew older I learned how to glue and mount my masterpieces and hang them on the wall. Now, with such a tiny house and no room for a dedicated puzzle space, and no where to store one of those puzzle rolls under a sofa or chair, I have been discovering online puzzles and games! What fun, and they have a very theraputic value! They keep me distracted from the day to day grind. They give my mind something to do when I feel listless, and they calm my mind down when I feel "busy" inside. They are good tools for strengthening the mind too, as in the "use it or lose it" philosophy, and they can even create and maintain social connections. My sister posted a great link on facebook to a site called JigZone.com, now embedded at the bottom of this page! Every day you can visit and find a fresh puzzle waiting for you! What fun! You can change the puzzle cuts, the number of pieces, etc! It's just plain fun for me, and so I thought I would share.

Some of my most FAVORITE puzzles/games are:
Words With Friends (app on iPod)
Scrabble (on Facebook)
Poppit (on Pogo Games)
Bejeweled Blitz (on Facebook and on iPod)
Word Whomp (on Pogo Games)
And TETRIS... found just about anywhere!

Do you have any favorites, online or off?

The Brighter Side Pizza Challenge!

2011-01-18T10:29:00.002-05:00

If there's one thing I have learned about Lyme Disease and Related Illnesses is that no two CASES are the same and no two PEOPLE require the same protocols of treatment and dietary accommodations. Some people avoid gluten, some yeast, some sugar in all forms, some sugar in only some forms, some avoid white flour but not whole wheat, some avoid all night shade foods, and some only the raw ones. Every body experiences the infections in different ways, as interactions from the bacteria impact differing body systems which, in turn, impact OTHER body systems. There is no one right way, because there are so many variables. Add to that food sensitivities and allergies that a person has before ever contracting these infections and the variables multiply! Each person has to become very familiar with their own food reactions, how those foods interact with their medications, and become sensitive to what their bodies are saying. Some work closely with an allergist, some a dietitian, some a naturopath, some an LLMD, and some have access to none of these professionals and they rely on their own research coupled with trial and error. Once someone becomes familiar with the way food impacts their symptoms there is another important thing to consider: CHANGE. People discover over time that they either pick up or let go of food sensitivities and inflammatory reactions, so keeping an open mind is very important to the healing process. Which brings me to another thing I have learned about Lyme... it is NEVER boring.

So, in response to Laurie's comment on yesterday's entry, "Did Someone Say Breakfast Pizza?", I thought it would be really fun and enlightening to put our heads together and come up with as many different toppings for the Gluten Free Pizza Crust! Hot. Cold. Entree or Dessert! Let's put on our thinking caps and see what we can come up with! BLOG ON pizza lovers! Let's expand our horizons and think outside of the pizza box!

Ready? What would you put here:

Did Someone Say GLUTEN FREE BREAKFAST PIZZA?

2011-01-17T19:07:00.001-05:00

A few days ago I made GF pizza from the Red Mill GF Pizza Mix. It was pretty tasty, much to my surprise, and satsified that pizza craving. I saved half the dough in my fridge wrapped in oiled plastic and stored in a tightly sealed plastic bag. Here is the recipe for the yummy GF pizza I made with it for breakfast:

Preheat over to 350F
Ingredients:

Red Mill Pizza Dough from mix
5 Eggs, beaten w/2T water
Toppings of your choice

Press dough onto pizza pan as directed on package (I used an ungreased stone). Dough will be sticky... sprinkle with GF flour if necessary.
Bake for 9 minutes at 350F.
While crust is baking you can cook the scrambled eggs.

To the baked crust - Top with the scrambled eggs and your favorite toppings. Here's what I used~

scrambled eggs, evenly distributed
pepperoni slices
small can of sliced mushrooms, drained
shredded cheddar cheese

Bake at 350 for 12-15 minutes and enjoy!
Looks good enough to eat, doesn't it?

Do you have a favorite original breakfast recipe? Fast? Yummy? GF? Send it in!!!

Introducing "Voices of Lyme"

2011-01-14T13:48:00.012-05:00

I want to thank everyone who has stopped by, read the blog, followed, and/or posted a comment! What fun it is to have this forum for sharing!

Today I am introducing you to a section on the main site called "Voices of Lyme". This section is devoted to real stories of hope and inspiration from real lymies, just like you and me! Every Friday, if things go according to plan, I will introduce a new story here on the blog, post it on the main site, and add the most recent story to the archives. What a collection this will become! I hope you enjoy reading, that you find glimmers of hope and joy, and return often for these real life experiences on the Brighter Side!

I'll go first and share one of my worst and best days:

Coinstar, Facebook, and God... by Donna Falcone

Today was a rough day. Our bank account tanked because somewhere there were bank receipts that never got recorded and became lint chunks in the dryer. So, I was heading for guilty depression, feeling so bad about my lyme disease; feeling so sorry that I couldn't work anymore; feeling so responsible for pending financial crisis. My husband can see this crash on the horizon as the tailwinds of reality catch the underbelly of my small aircraft and throw me into a downward spin. This looks like a job for "Super Husband"!!! Super Husband smiles at me (why the hell is he smiling I thought to myself) and asks "wanna go for a ride with me". "Where to?" "The Grocery Store." "Why... dinner is in the oven" (we don't have any money to buy anything anyway I groused to myself). "Coinstar!" I just looked at him and suddenly my plane started to right itself. "Okay", I said, not feeling enthusiastic, but glad for the distraction. Super Husband disappears for a few minutes and returns with the jar he has been stashing loose change in. Off we go to Coinstar.

Ever heard of Coinstar? It's one of those machines in the grocery store that counts your change for a small fee and then gives you a receipt... and then you can cash it in at Customer Service. So, there we stood as hundreds of pennies, nickels, dimes and quarters (and one paper clip) rolled through the counting mechanism... clinkity clinkity clink. I suddenly started to giggle and then laughed out loud... He smiled that big sweet "Super Husband" victory smile. "What are you laughing at?" he asked me. "Us! Coinstar! WHATEVER!" It struck me so funny that we were, at this stage of our lives, running to Coinstar to make it through the grocery shopping ahead! LOL! He really IS Super Husband you know. Oh, I forgot to mention, if you want to donate to charity Coinstar waves the fee, but our name was not listed on the available charities... so we went for the cash! Over $160 buckaroos... that was fun! We went home and had dinner, mood much improved, crash aborted... all is well. The money will come. I just have to wait for the paperwork from what used to be my job. When I complete that I can have back my savings account. To be truthful, there's not much in it. In fact, it is insignificant as far as a retirement plan goes... but it will be just enough to get us over this bump in the road. When I logged into my facebook account I found a message from God (yes, it's true... you can get God to send you a message every day... all you have to do is ask and it will be given). Here is today's message, I kid you not:
On this day of your life, Donna, we believe God wants you to know...
... wealth does not come from your bank account, wealth comes from the depth of your heart. What you really want is happiness. You might believe that a fat bank account will get you there, but that's false. Happy people are happy rich or poor, unhappy people are unhappy rich or poor. Money simply masks your real being by giving you activities to occupy your mind. Don't fool yourself, recession or not, your true wealth comes from your heart and is always only there.

Go ahead... just try and call that happenstance. I double dog dare you! I am a VERY wealthy woman!

So, that's my story recounting a horrible turned wonderful day... I hope you enjoyed it! If you have a story that you think belongs in "Voices of Lyme" please email it to me at dzfalcone@gmail.com . I'd love to see it!

blessings,

Donna }I{

Winter Butterflies....

2011-01-12T08:22:00.006-05:00

It's been a struggle. I think the food restrictions have taken their toll and I find that I need to very consciously look for the stand out, smile provoking, heart warming moments that often go unnoticed and sorely unappreciated. I call these "Butterfly Kisses" and, having lived with Lyme Disease, you'll probably relate to this little strategy I developed.

I remember early on in my treatment, when things were extremely rough for me. Not only was I living on a roller coaster, but the ride was non stop and the peaks and valleys were often far too close together only made more difficult by the "blindfold" of random and migratory symptoms (for another amusement park metaphor on Lyme visit Adventures in Lymeland and have a ride on the Carousel). Now, anyone who used to know me knows that I am, by nature, a very optimistic person. You know the type; glass is half full, every cloud has a silver lining, always look on the bright side kind of person who has been compared to Pollyanna more times than she can even remember. Lyme Disease, however, was the challenge life gave me that knocked me off that path for a while. There were many days where I couldn't see light, figuratively speaking, and this infuriated me. The other type of day that infuriated me was the kind where I thought I was having a GOOD day only to find myself suddenly on my kiester for some unknown, unknowable reason. My doctor told me that, as many of his Lyme patients experienced, the type of day you're having can turn on a dime in extreme measure. But, one day the "old" me popped in for a visit at the exact moment of the roller coaster drop just in time to grab a hold of the good thing that happened just before the plunge and say "wow... that was I moment I'm sure glad I got to have". It was something very simple, and though I can't remember exactly what it was it may have been something as simple as getting a great shot with my camera on the walk (and I used the term loosely) I forced myself to have! That was a turning point for me. That was my first official recognized "Butterfly Kiss" and what I learned about Butterfly Kisses is that the more you see, well, the more you see! Having this new idea to frame my day in suddenly helped me ride out the roller coaster drop by reminding me that good things happen every single day and noticing them was bringing meaning back into my life... it was the beginning of the return of Joy. Nothing changed but my perspective. I was still very sick. I was still on the roller coaster. I was still infuriated at times. But, now, I was also collecting Sweet Butterfly Kisses. I had let go of some resistence to my circumstances and found a welcome surprise. I was learning to practice presence. I even wrote a poem, and published a book of poetry by the same name.

quietly entering
gently alight
butterfly kisses
blessings in flight

moments are gifts
softly brushing your skin
open your heart
let the butterflies in....

The book, Sweet Butterfly Kisses, contains a collection of poems written immediately pre-diagnosis through the first full year of treatment. I found that writing was perhaps the biggest butterfly kiss of them all. Suddenly I had time and presence of mind to write poetry again, and it felt really, really good. I think Lyme Disease gave that back to me... my writing I mean. Blessings from disaster come. If you haven't read The Guest House, by Rumi, you might want to give it a look (on the Inner Life page, main site), but I'll share a quote with you here:

"The dark thought, the shame, the malice, Meet them at the door laughing
And invite them in.

Be grateful for whoever comes,Because each has been sent
As a guide from the beyond "

Mowlana Jalaluddin Rumi

If you have something you'd like to share for the Inner Life section on the site please do! Post here or email me at dzfalcone@gmail.com.

May you find Butterfly Kisses in your day, here in the heart of Winter!

blessings,

donna }I{

Sweet Butterfly Kisses is available for purchase at Lulu.com. Click here.

A Gluten Free Bagel Worth Mentioning....

2011-01-10T14:34:00.006-05:00

My day of grocery shopping yesterday yielded one great surprise! I'm happy to report that I have found a bagel that I really like! Yes. Gluten free. Its primary ingredients are tapioca and corn starches. No rice to be found, either, which also surprised me. They are called Glutino Original New York Style Bagels. They must be kept frozen therefore it is necessary to defrost at room temp or in the microwave for a few seconds (a very few... one bagel was ready in under 40 sec at the defrost setting). Slice, toast, and enjoy! The bagel was crispy when toasted, firm, and had a nice texture with a satisfying crunch! It was a tad difficult to slice once defrosted but this was only frustrating until I tasted it! I was surprised that this bagel was not only tolerable, but delicious! And, as luck would have it, they were on sale for under 2 bucks! For those of you who like a visual as you maneuver the overly stimulating aisles at the grocery:

The bagels were found in the natural foods section of our local Wegman's, in the freezer aisle. This is not to endorse a particular market but only to give you some hints as to where you might find it yourself. Click on the photo or link to shop Glutino online. This item contains yeast.

As of today I will be starting a list of GFF (Gluten Free Faves), taste tested and reviewed by fellow readers on the Brighter Side! Please post here, or email dzfalcone@gmail.com for consideration on the site.

One of the hardest things about shopping in the Gluten Free aisle is the high cost of these items combined with product blindness!!! By product blindness I am referring to a total unfamiliarity with the item, the brand, or the main ingredients. I find it very easy to shell out entree sized buckaroos if I have something to go on, but am very leery of spending our limited resources on food that will offend my senses and therefore go uneaten. What a waste! So, while there is no sure fire way to know if we will like something unless we taste it ourselves, we might be able to help each other in the process of choosing products we have tried and liked.

In the interest of keeping things positive let's stick to Thumbs Up reviews only, please! No need to fuss over writing a detailed review. Just send the brand, why you liked it, and where you found it. I'll post it on the main site under "Nourishment and Daily Living".

Happy Eating!

Donna }I{

Gluten Free... Me?

2011-01-09T10:16:00.001-05:00

At the moment my biggest Lyme instigated challenge is to learn how to eat gluten free. I've already done pretty well at the sugar free thing (most of the time) but this gluten free/wheat free thing is harder. I love all things bread! My hope is that inflammation will go down if certain foods are eliminated, thus reducing pain in feet and legs.

It took me a while to come to grips with the whole idea, and what finally convinced me was the undeniable reduction in pain that came when I stopped eating all flour for one week. Then I did a test day where I ate bread, 100% whole wheat. I already knew white flour was a problem but this was a question that only a challenge could answer. Within hours the pain in my feet was off the charts, in fact it was so strong that it kept me from sleeping at night. Proof. Sign. Time to create a gluten free me.

Lyme Disease has caused me to give up a lot of things and, emotionally, I was very resistant to giving up one more! It seems so irrational, yet I resisted. Wheat and gluten cause inflammation, and inflammation causes pain. By eliminating the sources of inflammation that I actually have some control over lies the potential for much less physical pain. You'd think it would be a no-brainer. You'd think it would be so easy to do. Resistance. I think this is the biggest obstacle that I face in healing. The constant fighting with my circumstances has kept me anchored there in them, and I find that when I surrender and just allow things to be as they are without judging them or myself I feel healthier. I think it has something to do with allowing "space" inside for everything. One of my favorite teachers is a Buddhist nun by the name of Pema Chodron, who says that we have room to hold it all.... ALL. Whatever it is, we have room to hold it:

"We think that the point is to pass the test or overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart. Then they come together again and fall apart again. It's just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy. (10)"
— Pema Chödrön (When Things Fall Apart)

Another thing she says, that I adore, is this:

We can drop the fundamental hope that there is a better "me" who one day will emerge. We can't just jump over ourselves as if we were not there.
Pema Chodron

That, to me, provides the perfect visual for resistance... it perfectly describes me to myself; jumping over the me that I am to try and get to the me that I WANT. The Lyme free me. The pain free me. The me who can eat cookies and pizza and drink wine without suffering the consequences of inflammation. All of these things are me, and so much more. So, if learning how to eat differently will reduce my own suffering then isn't it a great act of kindness and friendship that I do so? Ah... so you see what Lyme Disease has done, sneaky buggar...? Lyme Disease has forced me to make a choice - to be my own friend or my own enemy. It's really pretty simple when I'm sitting her at my computer feeling strong and optimistic and balanced. But in a few minutes I'll find myself in the aisles of the grocery store forced with the decisions I have so long resisted. Can I eat that? Of course I can. I can eat whatever I want as long as I can afford to put it in my cart. But, do I want to? Do I want to eat that? Do I want to increase my own suffering? Do I want to be my own friend or my own enemy? Isn't it funny how the topic of something as simple and basic as FOOD can lead to further awakening?

Please share your experiences with dietary changes, new requirements, and resources you have discovered to help along the way. The Brighter Side website has a page for just such information and, with your help, it will continue to grow.

So please share stories, recipes, books! I am so looking forward to learning from you all.

Blessings,

Donna }I{

Welcome to The Bright Side!

2011-01-07T13:05:00.002-05:00

Hello and Welcome to The Bright Side! blog, partner page to "The Brighter Side: Living With Lyme". I hope that you'll follow and come back often, share much, and add to the collection of knowledge we are gathering about how to live well, lyme or no lyme.

If you are anything like me there are plenty of days when you just want to scream because this tiny tick that bit you long long ago has completely changed your life. From the way you spend your days, the energy levels you have, the new sensitivities you must accommodate, to the endless medications, doctor visits, specialist referrals, and dietary changes. As my favorite frog said, "It's not Easy Being Green".

If you're anything like me you spend some amount of time being frustrated or angry, some time being numb, some time in mysterious blissful peace, and some time actively figuring out and then implementing what can be done to live as happily as you can regardless of Lyme Disease and the infections that often go along with it.

One day I had an idea. I was well aware of the many wonderful websites and blogs out there which guide people on questions of diagnosis, treatment, and the politics of Lyme, but sometimes I don't want to talk about symptoms or how to find a doctor or where is the next Under Our Skin screening? Sometimes I just need help coping with daily living because, if you are anything like me you will understand, I am rebuilding my life one moment at a time. I am learning how to fight with lyme less and live with lyme better. But that takes a different kind of resource, don't you think? That's where my idea for The Brighter Side came from.

There are untold numbers of us out there coping with the challenges of this illness every single day in many different ways. In fact, there are as many ways to live well with lyme as there are people who have it, so let's share what we are learning! We are keeping our houses clean (although maybe not as clean as we used to). We are cooking meals for ourselves and our familise (although maybe not as complex as we once did). We are raising children (although maybe not with as much energy or patience as we once did). We are holding down full or part time jobs (or not). We are learning to use that handicapped parking hangtag without shame (even though we know, to others, we look fine and quite able bodied). We are living WITH lyme.

So, that's how this blog and website were born. With any luck, and if we all put our heads together, this will become what I envision; a resource for daily living, a source of encouragement and support, and a place to ask questions like "How can I clean my bathtub without getting on my knees because I can't anymore and who can afford a housekeeper with these medical bills and no job?" or "I am making every effort to eat gluten free, sugar free, and _____ (insert your other restrictions here) but I can someone PLEASE tell me if there is a gluten free pizza crust out there that doesn't taste like the styrofoam that it looks like?"

Please come often, share, and chat along with us as we learn together how to live on the Bright Side!

Donna }I{