Thursday, September 9, 2010

Journeying Through Chronic Illness

This is going to be a very different kind of post for me because I don't often write in much detail about my illness. I'm going to share some significant news about something I have been seeking out for many years now and ironically; I'm doing it preceding the national campaign for Invisible Chronic Illness Awareness Week (September 13-19, 2010). I truly had no idea it was going to unfold like this but it's just like God to set things up in this way.

Can I get a witness?

Most of my family and friends know I've been chronically ill for the past sixteen years. What some might not know 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 a lot of places. I've been 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 true cause of my illness, even up until this present time. I've encountered some of the best and some of the worst that our health care system has to offer. 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 the life of my family.

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 little 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've wrestled with writing this. It is a stretch for me. However, I have 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, a couple of my 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 Deymelinating Syndrome, Chronic Mono, Transverse Myelitis, Primary Lateral Sclerosis, Vestibular Neuronitis, Optic Neuritis, and Migraine Variant secondary to MS, among other things.

It's really been Lyme and secondary infections all along.

Uh huh. It's left my head spinning too.

Lyme disease is often called, "The Great Imitator" because it can mimic so many other diseases, which can lead to improper and delayed diagnosis. This is what has 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 Lyme is left untreated, it will disseminate throughout the body and cause big problems. So it's been with me.

As many of you who also live with chronic illness surely know, my story isn't a simple one. I couldn't possibly address the myriad struggles that have occurred. What I do want is 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, which is commonly referred to as Neuro-Lyme or Late Stage Lyme Disease. I have weakness in my legs, which really stems from inflammation and damage in 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 and 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 aways 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. And 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 it is emotional for me because I didn't just settle for the possible or probable. Rather, I 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 something like experiencing four seasons in one day; it's that overwhelming at times.

As I close, I must say that my faith in Christ plays a huge role in my life and therefore also in this illness. 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, beautiful mess.

The love and support of my family, close friends, doctors, and therapists has been a tremendous blessing. You must have tangible, present help when chronically ill. My mother has been my caregiver throughout these years and I can't possibly articulate all she has done for me. I don't know where I'd be without her. Mom, thank you from the bottom of my heart!

Although this is a very difficult and lonely journey that is often misunderstood, and although physical healing has not yet come for me, I truly believe great beauty will be birthed from out of this pain and suffering (that's why I refer to it as a "beautiful mess"). In some small way it already has, but I honestly believe there's much more to come.

I hope you'll follow along with me in this Lyme journey. And I hope you'll celebrate with me one day when this all culminates in complete healing and wellness. Stay tuned.

~ Michelle

Immune Recovery Clinic 
Atlanta - 2003

Copyright ©2010 Michelle Holderman

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Under Our Skin (Lyme Disease Documentary)

Under Our Skin (Lyme Disease Documentary)
Watch Under Our Skin free at Hulu.com