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 feeling better now and have since finished this. I 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 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 into the whole mix brings yet another dimension into play. With that in mind, I've tried to express some of the honest truths of this rugged Lyme journey I have experienced while balancing it with the hope of that faith. Why I suddenly feel compelled to post this now - days from Christmas - is beyond me. But I do, and it needs to be said, for myself, and perhaps for everyone living with Lyme disease. - Michelle

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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 not easy, 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 absolutely believe God works in deep places and through ways we can't always see or understand. In the meantime, however, living in reality is unavoidable. It doesn't mean we aren't hoping, praying, and working for something better, we are, but we can't dismiss or trivialize 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 about this but have never endured a day of living with a debilitating chronic illness, much less years? That some people actually believe Lyme or other tick-borne infections 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 do.

I always try to be honest about living with Lyme, the many years I was misdiagnosed, and the ongoing repercussions. By sharing this, I hope to help bring better awareness and understanding. I also want to help advocate for the desperately needed changes in how Lyme disease is handled overall.

Having said that, I don't always go into a lot of detail about my ongoing health struggles, or what it's really like on a daily basis. Believe me, it looks a lot different on this side of the screen. And while it is wise to use discretion about how much personal information we share, I feel there are times it's needed and helpful to be more forthcoming about 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 myself. I am writing this for myself. But I hope it can help someone else too.

I truly believe there is a higher purpose in life, but I do want to share some truths about this long, hard journey. I wish I could somehow reveal everything that has 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 hardships and frustrations that no one else sees or understands except for those with us every day; 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 intricate and time-consuming because so much is involved. It's more of a disease complex, and the many chronic infections and inflammation involved take a significant 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 so on. It's something no one can understand unless you've experienced it for yourself, which is another reason to share our stories and possibly 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 get or understand; being misdiagnosed for so long certainly didn't help. 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 and to have your life completely turned upside down by it; to lose so much along the way and travel a path that is laborious, lonely, and so often misunderstood. It's also hard to fight people's insensitivities and judgments, 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 honestly 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 is, please don't talk about things you really don't 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. Stop it.

It is true I am better in some ways, and I'm really grateful for that. However, I'm still very unwell. 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 but would often fall back to 2 while occasionally falling up to 4. But I could only maintain a 3.

These past couple of years, I've been at a more consistent 4. And while I am glad for it, and while 4 is certainly better than 1 or 2, it's still a far stone's throw away from 10. I have fallen back to a 3 and am also having some 2-ish days again as I write this. So trust me when I say that I didn't just sit down and throw these words together. I've been working on this for a while.

On a majority of days, I look nothing like my profile pictures 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 apps, 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 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). The black and white version made me look better, but the color photo reveals the truth. Or at least as much 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 were functioning in my body before taking this next step. And because there were certain things she's been concerned about, me too. And although the weather was really nice that day, and 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 lunchtime 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 seemed.

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 every day. 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 biomechanics 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 disabled 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 on their wall, and just because somebody throws down a slab of cement or something resembling a ramp to get in the door, doesn't mean it's truly accessible.

This is precisely what one of my physical therapists 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 that not everybody would run to help me when out in public, nor would everybody care. She wanted to be sure I could take care of me 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. It's sad but true. However, I am so blessed to have my mother, who has been and still is 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 '90s 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 (in 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.

We'd get home early in the afternoon, and I would go straight to bed and crash hard. Sometimes, I'd sleep until the following day. Other times, I'd sleep until 7 or 8 o'clock that night, get up and eat some dinner, and then go right back to bed, not getting 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 hard work, especially over these past two to 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 a normal gait (walking) yet, and while I am still in a wheelchair, these are two of my most significant improvements.

I can now walk sideways or sidestep 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'd just fluctuate. So this is very encouraging. The joy of moving in this way and 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 the majority of the time. I mostly 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 that's exactly what it turned into over time. This is better also, but I still have days when I'm feeling bad or 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, numerous doctors visits, lab work, tests, therapies, and the continual quest 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 is 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 precisely 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 will 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 I don't need some fluffy cotton candy version when it comes to genuine faith. 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 apart 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 solid, honest kind that helps hold you 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 and desert 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 big fights. It's been banged up and bruised. It has scars, but it's real and hearty. And we've gotten to know each other better because we've grappled so much. While it's been excruciating a lot of the time (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 real, sustaining, colorful places, and the struggle of the past twenty years, have taught me more than anything else in my entire life. And while it has undoubtedly come with a cost, I honestly wouldn't trade this closeness with Him for anything.

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.

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

At times I have felt the true color me has challenged 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, often at the expense of truth. But here's the problem - that's not always reality.

Sometimes the stories are perfectly wonderful and lovely, perhaps even amazing and beyond what we could ever dream of or hope for. Many times, they are not.

We don't live in a fairy tale land where everything is always golden and ideal. We live in a real-world, with real people who have real problems. 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 to 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 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 essential 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, every part of it. True color me is still not well and still sits in a wheelchair. And there are days I still really struggle, even after all these years of various treatment protocols, therapies, healthy eating, prayers, ministry, and obedience. 

Yet true color me is also filled with greater wisdom and understanding. True color me has tougher skin and a braver heart. True color me is filled with deeper compassion, and a more vital inner beauty, trust, and hope, even for a better future.

True color me is filled with a faith that doesn't dismiss my suffering but helps sustain me through it. It's a tested faith that doesn't collapse when it gets too hard or even dark but knows how to hang in for the long haul and be salt and light. It's a faith that can withstand challenge and hardship while holding me in love, truth, and grace.

It's a genuine faith that knows my name. 

And I know His.  

Michelle Holderman
Copyright © 2014 

Struggling With Lyme, Pursuing Acceptance And Trusting God With The Rest

The struggles of living with Lyme disease are myriad, absurd, and often unexpected, just as they are with many chronic debilitating illnesses. This past week, I was reminded of this fact yet again.

Out in a store with my Mom when suddenly, I feel the familiar sensation of vestibular dysfunction arising. Subtle at first. Slightly woozy, dizzy. I'm sitting down in my wheelchair, mind you. I feel it in my eyes. There's pressure in and behind my ears and at the base of my head. I feel my neck begin to ache and tighten up. I can't believe this is happening. Rolling around in and out of isles, maneuvering people and small spaces, only makes it worse. So does too much input. Fatigue begins to wash over me. Mom takes one look at me and knows; t's familiar to her because she's seen it so often. 

We're both surprised and disappointed and we leave as soon as we can.

I'm thinking a lot of things.

Vestibular stuff. I haven't felt this in a while. Why is it happening now?

Ginger. I have no ginger with me. Shoot.

Whole Foods is just across the street. We'll go over there and get some.

By the time we get to the car, I'm running a fever and feeling more tired and woozy, a little nauseous. I'm feeling drained. I have no stamina.

What's happened? I used to be able to tolerate a couple of stops before anything like this. And I haven't had vertigo in quite some time. I feel like I've taken two steps backward.

And then it hits me.

I remember just how bad I have felt this year. How, since spring, I have not been out except to go to doctor's appointments, and many times, I've had to drag myself to those. How the Lyme treatment has been so taxing; how CMV and EBV levels got really high again this past summer, and we had to direct our focus on that too; how my spleen and liver have been so congested and dysfunctional; how tender and swollen they've been; how I've had visceral adjustments, and the last one wiped me out for two weeks.

I think I know why this happened. It happened because I've been more debilitated this year (no wonder I have such low stamina). It happened because I've been physically unable to hardly get out. It happened because I have had some better days at home since breaking from the Lyme treatment this fall, but I mistakenly thought that could translate into a better day out shopping in a store.

After many years of living with chronic illness, I know better. Having better days at home and better days out are two totally different things. I know that. I've lived that. But for some strange reason, it didn't dawn on me that I couldn't handle a store or two like usual, even though this was only my second time being out in one since early spring. And there it is. I was expecting the usual. But these are not usual times. And I have had an unusual year of feeling unusually bad.

As difficult as the past 17 years have been, this year has been uniquely complicated and challenging. I began a full Lyme treatment protocol in September 2010. Since then, between treating Chronic Lyme and multiple co-infections (Ehrlichia, Babesia, Rocky Mountain Spotted Fever, Mycoplasma, Epstein-Barr, and Cytomegalovirus), it's been a rough ride, to say the least. There are no words to fully articulate the depth of it all. If you've not been here, you can't possibly know. That's all I can say. It's as simple as that.

Ironically, I had planned to post something quite different today, a post I worked on a few days ago describing the mild, quiet, beautiful days I'd been having at home the week before last. I will still post that but what happened this past week is ever a reminder to me that there are some things we absolutely cannot do for ourselves. Only God can change certain things.

My Mom did run into Whole Foods and grabbed me a bottle of ginger. It always helps, and that day was no different. About 30 minutes after taking 1,000 mg of ginger root, I started feeling some better. Better enough to briefly stop at a store I love and then have lunch at a place I love (you learn to go on and enjoy some part of your day if you can). By then, though, I was totally spent.

One of the ongoing challenges in all this is acceptance; acceptance of what my body can and cannot do at any given moment, on any given day. On the ride home, I felt like I'd had a setback. I have felt this way many times over the years, and it still doesn't feel good. However, I've also learned it's not productive nor healthy to feel frustrated with my body for what it truly cannot do.

Instead, I must practice the love, self-care, and acceptance that I need. I know my body is working hard to repair, restore, and balance to heal. I know I help aid this process through eating good, whole nutrition, proper rest, treatment, therapies, prayer, etc. 

Being critical or harsh with my body accomplishes nothing. I remind myself to be as gentle and caring with me as I am with my Lyme and other chronically ill friends.

So I went to bed when I got home that day - I needed rest. I needed quiet. I needed hot tea. And I needed the total acceptance of where I am. That doesn't mean it will always be this way. It means I accept what I cannot change at this moment and trust God with the rest.

Michelle Holderman 

Copyright © 2011 

Go. One. More.

My door is open as I write (10:11 AM). It's a rather fallish like day here in my old Kentucky home. Low humidity and a cool gentle breeze blowing. I even had my tea on the deck this morning. Nice way to start a Saturday. It's been such a hot, oppressive summer so this is a very welcome change.

What has not been so nice is how badly I've felt these past three weeks. Bad. Very bad. I'm not feeling all that great even now yet I'm feeling a tad better than I have been. I'm not even sure why I'm writing except to give family and friends an update and perhaps simply to share what I'm going through.

Photo by Katja Brezovar

In addition to my Lyme protocol, I've been on a homeopathic series therapy to treat CMV (Cytomegalovirus) that has reared it's ugly head once again. Think mono. CMV is a cousin to EBV or Epstein-Barr Virus, the most common cause of mononucleosis. CMV and EBV, like Lyme, also get into the nervous system as well other organs. All of this together equals a burdened and overtaxed body that needs a break. Part of the problem is that we've revved up my immune system too much. I'm having an overactive immune response and my muscles, joints and lymph nodes have been paying the price. Clearly, we've had to back off a bit. It's a rather delicate balance. And it's such a complicated and crazy process. Unless you've experienced it up close and personal; you wouldn't believe it all if I told you.

I saw my doctor earlier this week. Correction - I dragged myself to my doctor earlier this week. It was pretty evident I was feeling awful and so we discussed everything that's been happening and made adjustments to my protocol. Yet my body wants to finish out this round of CMV treatment. I'll be done with it in the upcoming week. Still onward ho with the Lyme treatment.

As unwell as I generally feel, there are these times when everything - fatigue, fever, pain, inflammation, and all the other stuff - exacerbates or elevates to the worst level. Ask anyone with Lyme or any chronic illness for that matter and they'll say the same.

As my friend Kathy blogs, this illness has altered everything and requires everything to be altered. What's altered for me lately is the drive to keep pressing in. It's really hard to do when you physically feel so bad and have pressed and persevered for so many years. Yet somehow, someway (Godway) I will press on. I always do. Even when I'm crawling.

Note to self: Don't stop now. Go. One. More.



The Healing Files: Juicing

I'm now in the ninth month of my Lyme protocol, and I'm finding it difficult to put into words just how deeply this natural treatment is working. Right now, my days are up and down and anywhere in between. But having been so sick every day for several years and now being in this waxing and waning mode is actually somewhat encouraging. Although many days are just plain hard, I believe it reflects that my body is working to heal. It seems this time requires even more perseverance on my part, however. This is definitely a long and winding road, but it is a road ordained by God, and that makes the difference. 

I thought I'd post some photo updates to help share some of the things I'm doing in pursuit of healing and wellness. Today's post is about juicing, and while I've actually juiced for several years, I've become more serious about it since being on the Lyme protocol. Trust me when I say this is a full-time job.

I juice daily right now. And while the combination of vegetables I use varies, organic carrots, celery, beets, kale, and spinach are all a part of my overall regimen.

I initially started juicing freshly grown wheatgrass but soon realized it is very time-consuming and requires large amounts for daily use. Because of its excellent nutritional content, I started adding organic wheatgrass powder to my juice. Although I know nothing can compare to fresh wheatgrass, I find this powder quite good and the next best thing. It's more compatible with my circumstances.

This is the beautiful end product. Juicing each morning positively impacts my health, and adding wheatgrass seems to be a missing ingredient I need. I've noticed a slight but sure improvement in my energy and a more significant improvement in my digestion. I know I am putting whole power-packed nutrition into my body as I drink this daily. 

Good nutrition is a must, especially when healing. Juicing is a vital part of my overall health regimen and combining it with my treatment protocol and other healing therapies is really beneficial. I can see that it will always be an important part of living a healthy lifestyle. Investing in a juicer is so worth the money. It's a great way to get in the daily servings of fresh vegetables that we all need.

While juicing is clearly essential, it does require prep time and energy. Chronic profound fatigue has prevented me from doing even the simplest things through the years, and while my energy is slowly improving through this treatment, it's still a process. Some days, I'm totally back at zero. So I cannot do this all on my own, nor can anyone working to heal from chronic Lyme or any other disease. 

My dear mother continues helping me in so many ways, and this is one of them. She invests in buying, preparing, and juicing these vegetables for me, allowing me to regularly have fresh organic juice. On my own, I would not have the energy to do this every day, but she sees to it that it doesn't happen. I am blessed tremendously by her devotion to helping me be well. 

My Mom and Dad have both helped me so much financially through the years. I am beyond thankful for them and their support. There really are no words. The Lord is supplying what I need through my parents, and I pray He blesses them abundantly for all they have sacrificed and done for me.

Michelle Holderman 

Copyright © 2011 

Journeying Through Chronic Illness

I'm going to share some important news I have been seeking out for many years now. Ironically, I'm doing it preceding the national campaign for Invisible Chronic Illness Awareness Week (September 13-19, 2010). I honestly had no idea it would unfold like this, but that's just like God to set things up in this way.

Most of my family and friends know I've been chronically ill for the past sixteen years. What some might not realize is just how debilitating this illness is and how difficult it's been to find an accurate diagnosis. I've been told a lot of things through the years. I've been to a lot of places. I've gone through a lot of testing. And I've been through a lot of trial and error; so very up and down. It's been complicated, overwhelming, frustrating, draining, and disheartening.

Throughout the years, I've actively searched for the actual cause of this illness, even up until now. I've encountered some of the best and some of the worst that our healthcare system offers. That in itself forced me to change my thinking and make subsequent adjustments. And I thank God for it. For the past year, my doctor and I have pursued what we now believe to be the true root of this illness that has so changed my life and my family's life.

It is with a mixture of relief and reservation that I share this with you. I mean, this is the past sixteen years of my life briefly stuffed into this one tiny blog post. It feels rather peculiar to try and put something so profound as this into a few words. And it's bittersweet, too (if you're chronically ill and searching for answers, you know exactly what I mean). Honestly, I have wrestled with writing this, but I’ve earnestly felt the Lord nudging me to do this, so here it is.

I have chronic Lyme disease.

This implies I have had Lyme disease for a long time, and it's true. Longer than anyone really knew. I was misdiagnosed many years with MS and Chronic Fatigue Syndrome. But before that, some doctors found that I had several chronic viral and bacterial infections (EBV, CMV, VZV, Strep, etc.). Before that, I had been diagnosed with Post-Viral Demyelinating Syndrome, Chronic Mono, Transverse Myelitis, Primary Lateral Sclerosis, Vestibular Neuronitis, Optic Neuritis, and Migraine Variants secondary to MS, among other things.

All along, however, it's really been Lyme disease and secondary infections. 

Yes, it's left my head spinning too.

Lyme disease is called "The Great Imitator" because it can mimic many other diseases, leading to improper and delayed diagnosis. This is what’s happened to me, and it happens to many others as well. It is a very complex, multi-systemic infectious disease that is caused by the bacteria, Borrelia burgdorferi. When left untreated, Lyme can and will disseminate throughout the body and cause significant problems—so it's been with me.

As many of you who live with chronic illness surely know, my story isn't simple. I couldn't possibly address the myriad struggles that have occurred. I want to share some of the invisible aspects of my illness, which is what Invisible Illness Week is really all about - bringing awareness to the fact that much of the suffering of chronic illness and/or pain isn't always visible to others.

Let me first say the most tangible and visible aspect of this illness is clearly my wheelchair. But what a lot of people don't really know is why I am in a wheelchair. And that brings me to some of the not-so-visible parts of this illness.

Chronic Lyme disease has greatly affected me neurologically, commonly called Neuro-Lyme or Late Stage Lyme Disease. I have weakness in my legs, which really stems from inflammation and damage to my nervous system. But you can't "see" that. I've had many problems with neuropathies, paresthesias, balance, disequilibrium, and gait. These are the primary reasons I've been in a wheelchair for thirteen years.

But there's more to this illness. Deeply profound chronic fatigue. Recurrent low-grade fevers. Muscle and joint pain. Chronic sore throats. Headaches. Light Sensitivity. And on and on it goes; so much is involved. I really can't express how debilitating the fatigue and fevers are on many days; it's so very draining. My immune system has been damaged as well. Co-infections and secondary infections are common in chronic Lyme because of this, so it is for me. The bacteria that causes Lyme has also affected my heart, liver, and spleen. You can't tangibly see much of that, either.

What can be seen are the effects of it, but they're not always recognized, and while this might all seem random in how my physical body has been affected, it is the very essence of chronic Lyme disease. It has answered many of the plaguing questions we've had about the complexity of this debilitating illness throughout the years.

For me, the good news is in finally knowing what I'm dealing with. I can't tell you how frustrating it is to not know what's really going on when something clearly is. And after so long, you just want answers, no matter what they are.

I recently began a treatment protocol for CLD. So this is all very fresh and emotional. I didn't just settle for the possible or probable. Instead, I've prayed and fought long and hard for true answers. It's still an ongoing battle, but I know better where I stand now. 

I will say that living with chronic illness is akin to experiencing, as the old Crowded House song goes, four seasons in one day—it's that overwhelming a lot of times.

As I close, I must say that my faith in Jesus plays a huge role in my life and, therefore, in this illness as well. I cannot separate my faith from any aspect of living, including Lyme disease. My relationship with Jesus is what has ultimately sustained and preserved me. And I must also tell you that I've come to know Him in a much deeper and more personal way through all of this crazy mess.

The love and support of my family, close friends, doctors, and therapists have been a tremendous blessing. There's no doubt about it; you must have tangible, present help when chronically ill. 

To my dear Mom—thank you from the bottom of my heart for all you've done for me over the years!! 

Throughout all of these long and difficult years, she has been my caregiver and cheerleader, and I cannot possibly express the depth and impact her ongoing love and support have made on me. I really don't know where I'd be without her.

Although this is a really hard and lonely journey that is so often misunderstood, and although physical healing has not yet come for me, I truly believe something will be birthed out of this pain and suffering, which is why I often refer to it as “a beautiful mess.” In some small way, it already has, but I do believe there's more to come. 

In the meantime, I’d truly be honored if you follow along with me on this Lyme journey. Oh, and welcome to My Lyme Symphony, where I’ll be writing and documenting this whole process.

Stay tuned, friends.

Michelle

Immune Recovery Clinic 

Atlanta - 2003

Michelle Holderman

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