Thursday, September 9, 2010

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.


Immune Recovery Clinic 
Atlanta - 2003

Michelle Holderman
Copyright ©2010 

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