Monday, December 22, 2014

True Color Me: Honest Revelations Of This Rugged Lyme Journey

I wrote much of this several months ago (August) but then went into a stretch of feeling physically worse and had to put it on hold. I'm now feeling better. And I have since finished this and almost hit publish a dozen times but continually held back for different reasons. There are so many deep components to this complex disease that I often refrain from writing about it because I feel I can never fully address them all. But I've come to the conclusion that it just isn't possible. No matter how much anyone writes or speaks about this, there will always be something else or something more. Always. However, not writing at all doesn't accomplish anything either. I've also held back because I wondered what people would think or say after reading it. But they haven't had to live these past 20 years of my life either. I have. And factoring my faith in Christ into the whole mix brings yet another dimension into play. With all that in mind, I've tried to express some of the honest truths of this rugged Lyme journey I've experienced while balancing it with the hope of my faith. Why I suddenly feel compelled to post this now - days away from Christmas - is beyond me. But I do and it needs to be said. For myself, and perhaps for everyone living with chronic Lyme disease. 
~ Michelle

*       *       *       *       *       *       *       *       *       *       *       *

I've discovered something over the past twenty years of this journey.

We don't always want the truth of our stories to be the truth of our stories. Because the truth of ours stories is often painful, ugly, and messy. Living that actual truth out is very difficult. But it is our reality and we can't pretend like it's something that it's not.

There are certainly good parts of our stories too; beautiful, wonderful parts. Parts that bring us joy and blessings. But it's those other parts that are so hard to deal with. And yet accepting the whole truth of our lives is important.

Anyone who knows me knows I am a woman of faith and hope. I believe God works in deep places and through ways we cannot always see or understand. In the meantime, however, living in reality is unavoidable. It doesn't mean we aren't hoping and praying for something better, or working hard towards it, but I don't think we're suppose to dismiss, trivialize, or sugarcoat the difficult, unpleasant parts of our lives either.

Feeling the need to hide the truth of what we go through because others think we should be positive and "not talk like that" is ludicrous. How ridiculous is it that we must explain and defend ourselves to people who think they know everything, but have never endured a day of living with a debilitating chronic illness much less years? That some people actually believe we're not as sick as we say we are, or that Lyme couldn't possibly make someone that sick, is really unbelievable to me.

That's really what all this is about. Sharing more of the truth of my story.

The truth I live.

The truth many live.

I always try to be open and honest about living with chronic illness - about Lyme disease, the many years I was misdiagnosed, and the ongoing repercussions of it. By being open, I also want to help educate and bring better awareness and understanding. I also want to help advocate for the changes that are desperately needed in the way Lyme disease is handled overall.

Having said that, I don't always go into a lot of detail about my ongoing health struggles; of what it's really like day in and day out. Believe me, it looks a lot different on this side of the screen. And while it is certainly wisdom to use discretion about how much personal information we share, I do feel there are times it's really important and helpful to be more open about the truths of this disease and how it affects real lives.

Honestly, this has been burning a hole in me for a long time now. I need to write this for me. I am writing this for me. But I hope it can help someone else too.

While I truly believe there is a higher purpose, I want to share some more truths of what this long, rugged journey is like. I wish I could somehow tell you all of the things that have happened but it just isn't possible. I'd have to write a book or two. Maybe three. Instead, I'll share this. So please read on, but read on knowing this has been my life for the past twenty years. It's honest. It's real. And it's from straight the heart (and perhaps the gut a bit too).

After twenty years, I sometimes feel lost in this ongoing battle. Many days have been a struggle to do more than just exist. At times, it feels like all the color of life gets sucked right out, leaving everything in dull shades of gray. Leaving me in the gray. It can be a challenge to hold onto your identity.

Clearly, anyone who is chronically ill has unique daily struggles. We have regular battles and frustrations we go through that no one else sees or understands except for those who are with us in it everyday. They go through this too. And while there are many different kinds of suffering, there's something uniquely difficult about physical suffering.

When Lyme disease is chronic or long term, treatment is usually very difficult and time consuming because so much is involved. It really is more of a disease complex, and the many chronic infections and inflammation involved take a major toil.

There are so many things that break down in the body over time. It's like a chain reaction; one thing leads to another and then another and another. It's something no one can understand unless you've experienced yourself, which is yet another reason to share our stories and possibly help save someone else from the long years of suffering so many of us have endured because of misdiagnosis or delayed treatment.

Like many I know with Lyme, I've been much sicker than most people really get or understand. And being misdiagnosed for so long did not help either. As I said, none of us can fully grasp what we've never experienced before, but I'm telling you it's really hard to be so sick for so long; to have your life completely turned upside down; to lose so much along the way; and to travel a jagged path that is so difficult, lonely, and often misunderstood. It's also hard to fight the battle of people's judgments and insensitivities, even within the medical community; even within the church.

Seriously, you wouldn't believe some of the things people say to someone who is chronically ill. Or some of the "advice" they feel the need to give. Unless you've been there and done that, you truly cannot know the depths of this hardship. Even then, we all have a unique experience because we are uniquely different people with unique biology. My advice: please don't talk about things you really do not understand. And while I'm on the topic, let me say that making someone whose chronically ill feel like they're not doing enough or that they don't have enough faith to get well is cruel. Please stop it.

It is true I am better in some ways than I used to be. And I'm really grateful for that. However, I'm still not well. That's often hard for people to hear and fully comprehend. So I want to add some personal perspective to it.

My doctor and I sometimes use a scale to help us both measure and convey where we believe my health is overall. On this scale of 1-10, with 1 being the WORST and 10 being the BEST, I have spent a great many years at 1 and 2 - my absolute worst years. In hindsight, I wonder how I really did endure it all.

Over the past few years I've been at a 3 out of 10. But I would often fall back to 2 while occasionally fall up to 4. But 3 is only what I could maintain.

These past couple of years, I've been at a more consistent 4. Yes a F-O-U-R. And while I am glad for it, and while 4 is certainly better than 1 or 2, it is still far from being a 10. And as I write this, I have fallen back to a 3 and am having some 2-ish days again. So trust me when I tell you I didn't just sit down and throw these words together easily. I've been working on this for awhile.

On a majority of days I look nothing like my profile photos on social media. I usually look much worse and often feel worse too. I sometimes use editing programs or filters to enhance my photos (as a photographer, I love using various editing tools and I love black and white photography). I also sometimes edit my profile pics. I know this is my choice, but it's honestly because I only want a decent looking picture.

But there is a line, and I find myself feeling compelled to be more real about that line, and the truth of my life. We live in a culture that thrives so much on looking good at any expense, it's sending a dangerous message. It's just not reality. And it's certainly not reality living with Lyme disease.

The photos below from September show an edited black and white (photo 1) picture of me versus the original true color picture (photo 2) of me. The black and white makes me look better, but the color photo reveals the truth. Or at least as much truth as it could capture.

And the truth of this photo is that I had just had blood work done in preparation for a new phase of Lyme treatment. My doctor ordered labs to see how things are functioning in my body before we take this next step. And because there were certain things she's been concerned about; me too. Although the weather was really nice that day, and although it felt good to be out, I wasn't feeling very well. I was really fatigued and running a fever, among other things.

After getting labs done, my Mom and I had lunch in the car. We watched this crazy-hyper squirrel run around the parking lot we were in, devouring nuts like they were going out of style, which made us laugh. We had some really good coffee too. This lunch time in the car was the highlight of our day. Simple joys really do mean the most.

We ate in the car because I didn't feel like getting out again. We also ran by my doctor's office to pick up something I needed, and then stopped for a few groceries on the way home. I waited in the car (this is where I am in the photos below). I was feeling sort of sad and weary, thinking about how long I've been sick, how physically tired I was feeling, what my labs would show, and how unending this all seems.

So why am I telling you this?

Because this was the truth of that moment. Because that moment reflects the bigger truth I've lived with for twenty years - the truth I still live everyday. And because I'm showing you more of the true color me, and not just the black and white edited version.

PHOTO 1 EDITED BLACK AND WHITE ME


PHOTO 2 TRUE COLOR ME

I am still in a wheelchair and have been for seventeen long years. I don't just use it occasionally or whenever I go out; I am in it every. single. day.

My gait and balance have been greatly affected by this. You don't realize how complexed the bio-mechanics of walking are until you can't do it anymore.

Let me just say it's extremely difficult to roll around when not feeling well, severely fatigued, or in pain. And thick carpet is not my friend. Neither is gravel. There are never, ever, enough handicap parking spaces in any given parking lot. Not anywhere. Nor are there enough public sidewalk ramps. And just because a building or a restroom has the little blue handicap sign slapped on the wall, and just because somebody throws down a slab of cement or a "ramp" to get in the door, doesn't mean it's truly accessible.

This is precisely what one of my physical therapist's drilled into my head years ago, as well as the wheelchair skills I had to learn and adequately perform before she would officially release me. She let me know in a very candid way not everybody would run to help me when in public. Nor would everybody care. She wanted to be sure I could take care of myself and get where I needed to go.

She was right. And while I'm never out alone, I've seen and experienced a hundred times over what she alluded to. Sad but true. However, I am truly blessed to have my mother whose been my caregiver and biggest supporter throughout this entire ordeal. We have creatively maneuvered many a ramp, sidewalk, doorway, and parking space together over the years. Trust me, every person in a wheelchair could tell you stories.

I was in physical therapy in the late 90's and early 2K's - for over five straight years. This was during the sixteen year period I was misdiagnosed; long before we ever knew I had Lyme disease.

I spent three of those years in therapy at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky (inpatient and outpatient). I used to have outpatient PT three times a week and would fall asleep on the way home because I was so utterly exhausted. My Mom was always deeply concerned about this; like it wasn't normal to be that wiped out after an hour of physical therapy.

And it wasn't normal. It was an indication of what we didn't yet know.

Anyhow, we'd get home early in the afternoon and I would go straight to bed and crash hard. Sometimes, I'd sleep until the next morning. Other times, I'd sleep until 7 or 8 o'clock that night, get up and eat, go right back to bed, and not get up again until morning. Eventually, I had to quit physical therapy altogether because it was just too taxing for my body.

I also used to have a lot of major vertigo. It was absolutely awful to go through. Another one of those things no one can understand unless they've experienced it themselves. I might have an occasional flare up, but it's nothing at all like it used to be. All I can say is, THANK GOD FOR THAT!!

As a result of much treatment and much hard work, especially over these past two-three years, my balance and movement are way better than they've been in a very long time; actually since 1997, which was the year I first went into a chair. And while I still do not have normal gait (walking) yet, and while I am still in a wheelchair, these are two of my biggest improvements.

I am now able to walk sideways or side step around my bed, down the length of the kitchen counter, along the railing of our deck, etc. I do need something to hold to or have contact with. Some days I can go longer and further, and some days I cannot because I don't have the energy or my legs feel too weak.

The fact that I've been able to maintain this improvement is big. Really big. I've experienced improvements in other areas before but couldn't hold onto or sustain them, or they just fluctuate. So this is very encouraging. The joy of being able to move in this way and of being more solidly balanced is almost hard to describe. It is a freedom I've not had in years. And it's a significant improvement.

I'm pretty much home a majority of the time. Mostly, I only get out for my doctor appointments, lab work, or other pressing or necessary matters. If I'm having a better day I might feel like going out for lunch, but not often. I am also careful of getting out around a lot of people, which my doctor has cautioned me about. Especially when "stuff" is going around.

I was bedridden for many years. Long stretches of days and weeks at a time with very little reprieve in between. It didn't start out that way but over time that's exactly what it turned into. This is also better, but I still have days when I'm feeling badly or am more deeply fatigued and I'm right back there. I've been having some more of those days again. However, I am happy it's not as bad as it used to be.

It's been odd watching my friends and peers move on in theirs lives. It's usually the normal progression of getting older; furthering careers; buying houses; perhaps getting married; starting families; raising kids; doing life. A few are even becoming grandparents. Believe me, I know no one has a perfect life, and I want them to be successful and happy, but I cannot relate to those things. My adult life has been nothing like that. Mine has been filled with deep ongoing sickness, myriad doctors visits, lab work, tests, therapies, and the continual fight to find answers and get well.

There have also been many rugged places with my faith in this journey.

I've always tried to be honest about this too, so let me tell you something I've learned.

Trusting God and praising Him in the storm are not always easy to do, especially when the storm has raged on for so long. In fact, it's often the last thing you want to do or feel like doing. Many people give a lot of lip service to this when things are going easy and smooth, but when things get really tough and uncertain, when the rubber actually meets the road; it's a whole different story. This is why no one should criticize or judge what they've never had to live with or go through.

I learned a long time ago I can still trust Him while not understanding Him, which is exactly what He's after. He is far more concerned with our trust than our always understanding Him. As long as we live, we'll never fully understand everything. Trust is big with Him. Still, I know it's not always so easy. But something does happen when you choose to trust Him anyway; despite all the reasons you have not to.

When bad things happen to us, or someone we love, it's normal to question or struggle with our faith. We often beat ourselves up for this, but if our faith means anything at all, it can ultimately endure our deepest struggles, questions, and even our doubts. How can our faith mean anything if it's never challenged?

On the flip side of this, I also believe that in our desire to be faithful to Him, we shouldn't forget to be real too. God's not into fake or plastic living. Neither am I.

I don't know about you, but when it comes to genuine faith, I don't need some fluffy cotton candy version. I don't need a looks-good-on-the-outside-but-has-no-real-substance-on-the-inside version. And I certainly don't need a hyperchurchy version, meaning it's all good behind the four walls but falls a part otherwise.

None of these "versions" have enough authenticity for me. None of them have the true empowerment I need to help me through my real life.

I need the honest kind that helps hold you even through the worst storms of life. The kind that keeps breathing through the ups and the downs. A faith that's as much alive in the valley as it is on the mountaintop, which usually means you'll wrestle with it. And my faith has certainly been worked over. A lot.

We've had some fights. It's been banged up and bruised up. It has scars, but it's real and solid. And we've gotten to know each better because we have grappled so much. While it's honestly not been easy, it's actually been extremely painful and difficult (like pull-your-hair-outta-your-head difficult); it has brought me into deeper, sweeter places with Jesus.

Real places.
Sustaining places.
Colorful places.

These places, and the struggle of the past twenty years, have taught me more than anything else in my entire life. And while it has certainly come with a cost, I honestly wouldn't trade this closeness with Him for anything.

It's true I never thought or expected my life would look like it does. Some parts have been so difficult; I really have no words for them. But I also know it's not the end of my story either.

I know there's more.

Still, I won't deny what I'm going through or the truth of how hard it's been. Ironically, (perhaps it's more telling to call it divine irony), I feel my healing, recovery, and destiny are all tied into this path. And what other way is there to get to it, but go through it?

At times I have felt the true color me has been a challenge to some people's personal beliefs and theology. I've even felt some prefer the black and white edited version of me because it's easier for them to deal with and make sense of. And I think this is really a reflection of our culture as a whole.

Society likes pretty pictures and pretty stories (sadly often at the expense of truth). Yet here's the problem: that's not always reality.

Sometimes the stories are perfectly wonderful and nice, perhaps even amazing and beyond what we could hope or dream for, but sometimes they're not.

We don't live in fairy tale land where everything is always golden and ideal. We live in a real world, with real people, who have real problems, heartbreaks, and needs. And we all need real help for our real lives from a real God.

I believe one of the most courageous things a person can do is stand in the truth of their real life story; the good, the bad, the beautiful, and the ugly.

I'm not saying we never progress into greater or better things or learn how to walk in deeper faith. And I'm certainly not dismissing how God can bring change, healing, and restoration. I am saying living authentically is important and necessary. And that's what this whole post is really about - living life in true color, if you will.

True color me reflects the whole truth of my life; all of it.

True color me is still not well and still sits in a wheelchair. And there are days I still struggle; even after all these years of various treatments, healthy eating, prayer, and obedience. Yet true color me is also filled with greater wisdom and understanding. True color me has tougher skin and a more tender, braver heart. True color me is filled with deeper compassion and humility. And also a stronger inner beauty and hope, even for a better future.

True color me is filled with a real deal faith. It's a faith that doesn't dismiss my suffering but helps sustain me through it. A faith that doesn't collapse when it gets too hard but knows how to hang in for the long haul. One that doesn't run from the darkness but shines light straight up in it. It's a faith that can withstand challenge and hardship while holding me up in truth and grace.

It is a genuine faith that knows my name. 

And I know His. 

~ Michelle

Michelle Holderman
Copyright © 2014 

Sunday, October 26, 2014

Brief Health Update and The Blessings of Autumn

Hi friends. It's been an exceptionally rough few months for me. Honestly, I've felt so bad and so fatigued I haven't really cared about writing. I've had many bedridden days again and I hate it. I know so many of you understand exactly what I'm saying. Earlier this year, we focused on Rocky Mountain Spotted Fever and felt my body needed to detox before working through anything more. So over the last several months I've been doing a comprehensive detox protocol, especially in preparation for a stronger, deeper level of homeopathic Lyme treatment. While I've done detoxes before, I've never done one this comprehensive. And it has absolutely kicked my butt and sent my into a crash I didn't expect. But my labs show I am in adrenal exhaustion and I know this has played a role. My doctor feels this is the reason I haven't been able to pull out of it. Between all of the "stuff" this detox is bringing out and my exhausted adrenal glands; my body is just too taxed to deal with it all. Overwhelmed. Too much physical and biochemical stress. Needless to say, everything else is on hold for now.

On a side note, I found an excellent book by Dr. James Wilson, ND, PhD, entitled Adrenal Fatigue: The 21st Century Stress Syndrome. Clearly there are different kinds of stressors, which all stress affects the adrenal glands, but in speaking about chronic illness Dr. Wilson stated, "The more chronic the illness, the more critical the adrenal response becomes." That is a profound statement and I think it's something we all need to be aware of. After 20 solid years of this chronic debilitating illness, I know my adrenals are in serious need of attention.

Also of note is that Dr. Wilson says infections, particularly respiratory infections, are especially draining on the adrenal glands. He says the more chronic an infection is, the more taxing it becomes on adrenal function. And it's cumulative. He also says if pathogens (disease causing bacteria, viruses, parasites, etc,) are present in the body, they must be dealt with first before proper function of the adrenal glands can be fully restored.

Well this is really the Catch-22 for those of us with chronic Lyme (and other co-infections). As it stands, Borrelia (Lyme bacteria) is not a pathogen that can be eliminated from the body. Regardless, I believe doing everything I can to help my exhausted adrenal glands is vitally important. But my adrenals aren't the only thing that's exhausted. My whole body is exhausted. I. Am. Exhausted. This disease itself is physically exhausting. Working your butt off for twenty straight years to be well, doing anything you can, is also exhausting; in every way. I don't even have words for it all anymore. And let me just say if you haven't been here then you cannot understand the depths of this.

I've been on basic adrenal support in the past but am now on a more comprehensive support. The foods we eat can also play a big role in helping our adrenal glands heal and Dr. Wilson discusses this at length in his book. Even the times we eat can either be beneficial or detrimental to our adrenal function. I believe in eating whole, healthy foods anyhow, so I'm really focusing on this as well. And while I felt better for almost two weeks after beginning the adrenal support, I've started feeling badly again recently. It's the crazy roller coaster ride that never lets you get off.

For years, this has been how my body responds to anything new. Feel better at first and then crash and feel like crap again. An immunologist my doctor consulted with last year said this is a sign of severe immune imbalance. He said a Lyme infection plays havoc on the immune system; especially when it's long term. His exact words: "Long term Lyme infections confuse the immune system to such a degree that it causes it to lose its intelligence." If you're interested in reading more about this go here.

We've been working on correcting this immune dysfunction for over a year. It can get so frustrating and discouraging when working so long and hard to correct something but not seeing big changes. That's not to say my immune system isn't functioning better on some level; it is. However, I still have an immune deficiency. Interestingly though, our adrenal glands have a direct affect on the overall efficiency of our immune systems. So knowing what I do now, I'm thinking my adrenals have played a role in this as well. Perhaps that's an overlooked key. And perhaps this would also explain my struggle to fully recover from a major respiratory infection I had back in 2012. I seriously hope healing my adrenal glands will also help balance and improve my immune function more. I suppose like everything else in working to physically heal, especially where the Lyme complex is concerned; it's a process.

I don't feel well enough to write anything more but given this beautiful season we're in, and because I always try to find something beautiful in the midst of this mess, I wanted to share a post from my other blog, The Ragamuffin Saint, that I wrote three years ago entitled, The Blessings of Autumn. I so love fall and wish I could get out more to enjoy it. I do have a great view from my bedroom so that is a blessing to my soul. And I try to get out on our deck with some hot tea to take in the beautiful landscape and breathe in some crisp fall air. I hope you enjoy the post and photos from October 2011; especially if you can't get out. Believe me, I understand. May it bring a smile to your face and leave your heart warmed with some of the beauty of fall.

~ Michelle

Monday, August 18, 2014

Keep Dreaming, Friends


Even though this journey is long and hard.
Don't give up.
Don't quit.
Keep hoping.
Keep believing.
HOLD ON TIGHT TO YOUR DREAMS.
They're worth it.
And so are you.

In love and hope,
~ Michelle

Friday, July 11, 2014

Welcome To The Truth About Lyme Disease

Or perhaps I should say welcome to the truth about Lyme disease as I see it. I've wanted to write this so many times I've lost count. And I have struggled with doing so for many reasons. First off, it's a huge task to take on. The truth of Lyme disease is no small thing nor is it for the faint of heart. Moreover I don't have the amount of energy I think it takes to do it complete justice. But then again could any length of writing really do that? Truly, this could go so many ways. Then I think it might just be better to write this thing freestyle. Whatever comes out, comes out. Que sera, sera. But I don't want to come across in the wrong way either.

Do you see a dilemma forming here?

Having said all that, I think it's better to go for it than leave it all unsaid. And I've experienced my share of being misunderstood; so what the heck.

I know and respect that each person's experience is unique. And there have been many already who've addressed this topic in a variety of ways, probably better than I can. So while this is in no way a comprehensive piece on the truths of Lyme disease; it is from the heart. And the gut. And the funny bone.

I've written about Lyme in myriad ways before so I'm going to try this from a more distinctive point of view. Perhaps quite different from how I usually write. It might work. It might not. Maybe this whole thing will only make sense to those of us with Lyme. And maybe this won't make any sense period. Nevertheless, here goes.

Lyme disease can be your worst freaking nightmare.

How's that for an introduction?

Lyme, and other tick-borne infections, can be easy to get but difficult to treat. Mainstream medicine tells people the opposite. I'm telling you that I and thousands of other Lyme sufferers can't all be wrong.

When Lyme goes undiagnosed, misdiagnosed, or untreated it only allows the bacteria to spread and entrench itself deeper in tissues and cells. That's why if left unabated over time; the whole body often becomes involved including major organs like the brain, heart, and liver.

If caught early, it can be treated pretty successfully without complications. But here's another problem. Many people are carrying the Lyme bacteria around in their bodies and don't even know it. That is until their immune system gets taxed by some serious stressor like an infection, surgery, death of a loved one, major life change or some other type of physical or emotional trauma. Then it can rear its ugly head seemingly out of no where.

For me it was after having an oral surgery, which later turned into having two more subsequent surgeries due to complications. After having three oral surgeries, two within a year, you bet my immune system was down. I've never felt the same since that initial one. And it was the beginning of what later became a 16 year diagnostic nightmare for me. And now, 20 years later, here I am. Still working to heal and recover from what we now know is chronic Lyme disease. Misdiagnosis was a big issue for me. My story is reflective of so many other people's stories. And vice versa.

The truth is, it isn't only about the Lyme bacteria (Borrelia, of which there are various strains) when dealing with a long term or chronic Lyme infection. There are many factors involved, which is why it is more appropriately referred to as the Lyme Disease Complex. Other co-infections, immune suppression, systemic inflammation, genetics, methylation, toxicology, trauma, nutritional deficiencies, detoxification, etc, are all critical issues that must be addressed as well. Furthermore, we each have a unique biological makeup and that means we respond differently to things, including treatments. There is no one size fits all treatment protocol. I personally believe we each need an individualized treatment plan.

Integrative medicine physician Dr. Isaac Eliaz, MD, MS, LAc, recently wrote an article on Huff Post Healthy Living entitled, The Truth About Treating Lyme Disease. It's a really good piece regarding the truth about the Lyme Complex and his holistic overview of what successful treatment must include. He also does a great job of conveying the difficulties of treating this complicated disease complex. It's not so simple. He emphasizes that it takes time (don't we know it). And he also encourages that there is always hope for improvement (totally agree). It's worth taking the time to read; especially if you or a loved one has Lyme.

And do you honestly want to know how we feel about Lyme?

We hate it. It makes us want to puke. In fact, some people with Lyme do puke.

On a scale of 1-10 (with one being the worst and ten being the best), most all of us at some point have been at 1 and 2 for months and years. Many of us have made some improvements but are fortunate if we can get to a 5 or 6; even after working long and hard through various treatments. It seriously takes a great deal of time to work through this complexed healing process. Some people are never the same. And some people don't make it.

It feels like living in an ongoing episode of The X-Files. You know, where the truth is out there but is always elusive, suppressed, and concealed. Where the ones who really know the truth, and are willing to go out on a limb for it, are usually portrayed in a poor light. Can anybody say cray, cray?

Remember Fox "Spooky" Mulder?

Yeah, now he knew the truth. He wasn't crazy; he was sharp, brilliant actually, and he was a threat because of it. He lost a lot, but he kept on working hard and pursuing what he knew was right; despite having to fight the system and all the players in it; despite getting discouraged at times; despite almost quitting.

You see where I'm going with this? Symbolism is a great tool. Don't ever give up, Lyme friends. Lets hold on and keep believing together.

By the way, I've often wondered if those "designer bees" from The X-Files movie that were housed in huge domes out in the middle of no where - amongst all the random corn crops - didn't hold the real cure for Lyme.

Uh. Huh.

Maybe we should consider starting The L-Files.

Seriously though.

We work our butts off every, single day to be well. Or at least work towards some type of improvement on some level. Any level.

We're not on some extended hiatus having the time of our lives because we "get to stay home."

Really?!? 

Does anyone actually think that?

They must because you'd be shocked at some of the responses many of us have gotten from people. Not all people, but some people. How shall I put this? Some people say the most ridiculous, insensitive things, it's almost comical. 

I said almost. 

It's not very comical when you're on the receiving end and don't physically feel well or are in much physical pain. Or when you're so deeply fatigued you can hardly breath, much less move. Or when you've lost so much a long the way but nobody can see it. Or perhaps they don't want to.

The effects of Lyme disease on real lives creates tremendous suffering in body, soul, and spirit.

It hits wallets and checkbooks pretty hard too.

I've said this many times before and have certainly learned it's very true: no one can fully understand the depths of something they've never experienced themselves. This is true of many things in life, including chronic illness. I'm specifically referring to Lyme disease because that's what I've lived with for so long. And that's what has turned my life entirely upside down; like it has so many others.

We're all sicker than anyone really knows or understands. However, when others ask us how we are, we've learned it's usually a lot easier NOT to go into detail. Mainly because many people just don't understand. We're not faulting them. As I said, no one can honestly understand this if they've not lived it. But it is less frustrating and draining for us than having to deal with some of the looks, the rhetoric, and the casual, sugarcoated responses we so often get.

Hey people this is not Candy Land, OK?

Or should I say Candy Crush? 

Um, yes. We're STILL in treatment. I'm sorry that's hard to grasp. Try living with it. We know with all the remarkable technology of today there should be premium testing and perfect treatments available. Maybe in Candy Crush Saga that would exist. Maybe for Tiffi and Odus the Owl. But not in Lyme Land. X-Files. Remember? And yes, it can take years to make headway with this.

We deal with it every single day.

Some days we're up. Some days we're down. And some days we park it in the middle and can't budge.

Some days we laugh. Some days we sigh. And some days we sob our guts out.

Some days we're hurting. Some days we're scared. Some days we're frustrated. Some days we're weary. And some days we want to scream our guts out.

Some days we DO scream our guts out, which usually scares the cat, the dog, and/or the neighbors, but it sure makes us feel better.

Some days this is all so absurd and surreal; we just shake our heads. A lot. Some days it's so weighty and serious; we don't really know what to do with it. And some days we're so dang sick, fatigued, and debilitated; we don't care about anything.

Some days we light up. Some days we crank it like a chainsaw. And some days we totally crash.

Some days we long for the life we once had. Some days we dare to dream big for the future. Some days we feel so lost and alone in it all. And some days it feels like this will never end.

Some days we feel like we got the boom. Some days we fall down and go boom. And some days we feel like the boom done went and left.

Some days we raise the music through the roof and don't want to talk to anybody about anything; as in, shut up; my favorite song is playing! Some days we can't stop talking about it. Some days we want and need silence. And some days we're so tired of this whole mess, we pretend it doesn't exist anymore. However, that usually doesn't last very long.

Some days we feel like we can see some light at the end of the tunnel. Some days the light gets brighter. And some days the light seems to have disappeared.

Some days we express words we didn't even know were buried deep within us. Some days we have no words whatsoever. And some days we write really long, eccentric blog posts.

Welcome to the truth about Lyme disease.

~ Michelle

PS: No animals, neighbors, or ticks were hurt in the process of writing this truthful but off the wall piece about one of the fastest spreading, most serious infectious diseases today.

ALTHOUGH, I did heavily mix rock, electronica, hip-hop, singer-songwriter and folk music together during the writing process. And I had a homeopathic cocktail chased minutes later by a tall hot green tea. And I was texting my nephew about new kicks (not to be confused with new ticks), swimming, and black eyes. Otherwise nothing eventful took place.

PPS: Take a deep breath.

PPPS: Actually, I wouldn't mind taking out a few ticks.

PPPPS: We all share commonalities but truly; our stories are unique. And your story matters, friend. Don't be afraid to share it. Someone, somewhere needs to hear it. Welcome to the truth indeed.

Thursday, May 1, 2014

It's Lyme Disease Awareness Month


May is Lyme Disease awareness month.

Did you know that Lyme disease is the fastest spreading infectious disease in America?

Last August, the CDC upped their official count of new Lyme disease cases in the US annually from 30,000 to 300,000 ~ A TEN FOLD INCREASE. But that's only an estimate of reported cases. Many Lyme diagnoses are not reported. Therefore, the real number is even greater.

Lyme is a tick-borne disease caused by the spirochetal bacteria, Borrelia burgdorferi (Bb). While ticks are considered the primary mode of transmission, other insects (mosquitoes, fleas, mites, flies) can carry the Lyme bacteria as well.

Lyme disease is found in all 50 states and many other countries including Canada, UK, The Netherlands, Australia, Germany, and China, among others. 

For more detailed information please read What Is Lyme Disease?

For a better understanding of the Borrelia bacteria please read:





Living each day with the effects of this complexed disease can be challenging to say the least. Nevertheless lets keep fighting the good fight, my Lyme Warrior friends. We'll see this through together.

In FAITH, HOPE, and LOVE.

~ Michelle

Tuesday, February 25, 2014

Update On My Lyme Journey: Part 2

It's been over five months now since I started a new Lyme treatment. Despite working very hard for more than three years using various protocols, my doctor and I found out last September that I still have an active Lyme infection. Discouraging. But we also found out a significant missing piece to the puzzle in how this long term infection with Borrelia (Lyme bacteria) has affected my immune system. To read my previous health update about this go here

I am having some rough days on this treatment. It's really up and down. Some days I feel better; other days I feel bad. And many days fall anywhere in between. But it sure beats feeling the absolute worst every day, all day, like I have for so many years.

We're also treating the long term Epstein-Barr (EBV) infection that I've struggled with for quite awhile as well. The immunologist (Dr. N) my doctor consulted with last fall says it's imperative to treat EBV in conjunction with Lyme because they get layered in together and play off each other. So treatment must be targeted at both. 

Actually several years ago, I was treated for a two year period with several different prescription antivirals specifically for Epstein-Barr. Clearly, it didn't work because it is still an ongoing issue for me. We didn't know about the Lyme infection then either so I think, just as Dr. N stated, that Lyme and EBV do work in tandem. Even before hearing this from him, I've always felt there is a link between them because of my own experience.

We're also working to correct the severe immune dysfunction the Borrelia (Bb) bacteria has created in my body. I think this has clearly played a role in the chronicity of EBV but I truly believe Lyme directly has everything to do with keeping EBV in a reactivated state. As for the immune dysfunction, I’m stuck in overdrive on my T-helper 2 side, which means it overacts. This has pushed my T-helper 1 side into suppression, which causes it to underact. All because of the Lyme infection. This has been going on for a number of years and has thrown me into an auto-immune cycle. The immunologist also told us long term Lyme infections cause the immune system to become so confused it literally loses its intelligence. We're working to restore it.

I'm experiencing more neuro stuff at times too. I've been having a lot of buzzing, tingling, numbness, burning, and shocking pains. The sensation on the left side of my face was very dull for several days. All of these sharp, burning pains feel like touching an electric fence that sends a burning jolt through you. It isn't very pleasant to go through but I think it's actually a sign my body is working to heal and repair my nervous system. I believe the treatment is helping to reduce inflammation more and is better supporting my neuronal function, which is exactly what it's suppose to do. I still have a way to go with this but my movement and balance are some better. I've got to get out of this wheelchair. And I am.

Also, the big Lyme ring rashes I've had on my back, chest, and abdomen for almost a year now are much better since starting on this treatment. At one point, I seriously looked like I had the Olympic rings on my back. Except there were more than five. Overall it has cleared up and I am so glad. Big thumbs up for that. 

I'm not sure what's coming next. I might feel better or I might feel worse. Will probably oscillate back and forth. Either way, I've got to do this. We must deal with this Lyme infection as much as possible. And keep reducing inflammation in my body. I do believe some good changes are in progress. I just hope and pray I feel better sooner rather than later.

On side note, this year, 2014, marks twenty years of chronic illness for me. I can't help but think back on everything I've been through over these many long and difficult years and wonder how I've survived it all. It's been that hard and then some. But as I've said many times before, and it's true, God has kept me in a way only He can.

My beloved mother is my "boots on the ground" if you will, and has been all these years. And when you're chronically ill, you need present, tangible help every, single day. Love and well wishes from afar mean a great deal but they aren't present tangible help while you're so sick, severely fatigued, and debilitated. She is the one who has been by my side through it all. And I am so grateful to have her and the help she gives me. I can't begin to tell you how much she has done for me these past twenty years; not only the big things but the many small day in and day out things as well.

Prayer helps sustain us very much but pragmatic help is equally necessary. It takes both to get through this. Actually, when you're so sick and fatigued you can't function, you need those real hands and feet present to help you more than anything else. You need somebody to show up. Yes, prayer helps but it doesn't make meals for you; it doesn't tangibly meet your ongoing physical needs throughout each day; it doesn't drive you to your doctors appointments; it doesn't sit with you while you're receiving your lab or test results; it doesn't hold your hand while you're having a really bad day. Love in action from somebody is required.   

My Dad and Mom have both made many sacrifices to help me since I've been ill. And I know how truly blessed I am to have the ongoing support I do. Many do not. I also know my illness has been very hard for my family. I understand it isn't easy to watch someone you love suffer; especially for so long. This illness truly affects everything.

What I'm going through while being on this treatment isn't something I haven’t already been dealing with on some level through all these years, but it does get wearisome sometimes. And again, if you don't have ongoing tangible support; it's doubly difficult and stressful. Too many do not have the necessary support needed and they suffer even more as a result. Everyone whose sick should have somebody in their life they can depend on to help them, but sadly; that's not always the case.  

I absolutely believe God is doing what only He can in this but in the meantime; I must keep doing what I need to do. And it's a full time job. I also continue to pray for perseverance and resolve. If you'd like to pray anything for me right now, please pray for those two things but especially resolve. And please pray for everyone who has Lyme disease. The suffering is often tremendous and not everybody has a caregiver to help them. Better yet, if you know someone sick with Lyme or anyone whose chronically ill for that matter (especially with no ongoing support), offer to help them practically in some way, i.e. run errands, pick up groceries, or help around the house. Or perhaps they're in need of transportation to an upcoming doctor's appointment. Ask what their specific needs are and then follow through with help.

All of us who live with chronic Lyme disease know what a battle it is to reach remission. And we wonder about relapses because the Borrelia bacteria is so good at hiding in the body and is relapsing in nature. But you just have to focus on what needs to be done each day. That's what I've learned through the years. Take one day at a time. Be brave. Cry when you need to. And keep trusting God. 

~ Michelle

Friday, January 24, 2014

Crying Is Okay Here

Consider this a personal invitation to let out your held back tears while at My Lyme Symphony. Seriously. Tears are very healing and have different functions in the body. They help us process loss and grief. Equally, they help us to express profound joy and relief. Chemically speaking, tears act as a safety valve by releasing excess stress hormones such as cortisol. Dr. Judith Orloff, M.D. wrote a really good article about all of this entitled, The Health Benefits of Tears. It's worth reading.

I believe it was quite intentional that God gave us the ability, and the gift, to cry. Tears speak the truth of our hearts when the struggle or pain is just too great and overwhelming. They are a unique voice all their own because tears express what words often cannot. They give value to our experiences.

Lyme is very taxing and we often find ourselves battling through one thing or anther. But we need to be kind to ourselves in this healing journey. We need to honor our God-given tears when they come by allowing them expression. Please know that crying is perfectly okay here. In fact, I encourage it.

In love and friendship. ~ Michelle