Tuesday, September 14, 2010

30 Things About My Illness You May Not Know

I'm joining a wonderful blogging campaign for National Invisible Chronic Illness Awareness Week, sponsored by Rest Ministries. I appreciate you taking the time to read my blog. If you'd like to know more, please check out: http://www.invisibleillness.com/.

1. I live with chronic Lyme disease, but this answer did not come easily. Can anybody say diagnosis nightmare?! Like many others, I've been through the gamut of diagnoses over the years. To better understand my personal story, you might consider reading the post preceding this one entitled, Journeying Through Chronic Illness. 

2. I've actually had symptoms since 1992. But everything escalated after having oral surgery in 1994.

3. I was 24 when I first became ill. I'm now 40.

4. The biggest adjustment I've had to make is learning how to live with and manage physical limitations.

5. Most people assume if I'm out, I must be doing fine. That's not true. I do have some days I feel relatively good, but it can change in a matter of hours or from day to day. Most days, I don't feel well at all, and a lot of days are just plain bad. I'm hoping this will change as we work through a new treatment protocol I'm on, especially since we now know what's really been going on all this time!

6. If I'm not feeling well when I first wake up, I know it's going to be a bad day. If I am feeling reasonably good, however, mornings can be the time of day when I have more energy than afternoons. I tend to get more fatigued and run a fever as the day goes on.

7. My favorite medical TV shows are ER, China Beach, Emergency, and Hawthorne.

8. An electronic gadget I couldn't live without is my iPhone. I especially like it when I'm not feeling well. I can listen to music and access email, FB, Twitter, and other apps, all from bed. Even though I use my laptop regularly, it's just too big to deal with when I'm feeling bad. That's when my iPhone really makes the difference for me.

9. Sometimes, people just don't understand. And sometimes, people say the wrong things. These are two things I've had to both accept and make peace with. And while this is true of life in general, it is amplified in chronic illness. This was much more difficult early on in my illness, but there are still those occasions when it stings a bit. I truly believe most people mean well; they just don't understand the complexity of living with chronic illness, pain, and/or disability.

10. The number of pills I take daily varies. I use homeopathic medicines, which are liquid, so I add so many drops to my water and drink or take them straight by mouth. My herbal and nutritional supplements vary. Some are liquid also. Presently, I'm taking 4 pills a day.

11. I like and benefit very much from using alternative medicine and therapies. I spent several years using prescription medications but have found a great deal of help through natural and alternative means. I believe everyone has to find what they feel is best for themselves and certainly what works. My physician is a Naturopathic Doctor. I have Massage Therapy and other bodywork regularly. Epsom Salt and aromatherapy baths can help ease muscle and joint pain and greatly help with detoxification. I've also found eating whole nutrition is extremely important. So I eat a very healthy diet, which initially stemmed out of necessity, but I feel better when eating whole, nutritious foods.

12. My wheelchair is the most tangible, visible part of my illness, and that's what people always go to. But it certainly isn't the only part. Clearly, not being able to walk is a huge deal! However, it is one obvious reflection of many invisible aspects of this illness. I pray for the day, and this is my faith speaking when I am well and will no longer need to use this wheelchair. I'll be thrilled to become totally invisible in that sense!

13. I haven't been able to work in my chosen profession for many years now. It took me quite a while to accept that. You know - one more thing I had to give up. But I truly believe God has other plans for me.

14. People would probably be surprised to know that I play the drums :)

15. Some of the hardest things to accept about this new reality have been the many losses and limitations with chronic illness and disability.

16. My illness actually opened the door for me to speak to nursing and radiology students at a local college about my perspective as a healthcare professional and a patient. Based on my own experiences, I created scenarios for the students to assess how they would potentially respond. We then had open discussions about it, and many of them began to share their own personal stories. It was a really great experience for me, and I hope it was for them as well.

17. I am thankful for the good days or moments I have, even if they are few and far between. Living with a chronic illness and disability has undoubtedly brought a whole new and unique perspective of life; it has been a teacher in many ways.

18. Some of the things I really miss doing since being chronically ill is having the stamina and energy to go out shopping with my Mom and run around all day, i.e., shopping, having lunch, shopping some more, having coffee, etc. I miss going on vacations too, which require energy and money. Mostly it's the simpler things I miss, like taking a walk in the woods, especially in the fall. Being able to walk and run with my nephews. Or being able to indulge in something sweet without repercussions.

19. It's difficult to fully express the deep struggles of living life with a chronic illness. One mourns for the physical losses that accompany disease and the loss of friends, jobs, lifestyles, etc. One thing that was really hard for me to give up was my total independence. Thankfully, I'm still independent in some ways. This has come through making our home more accessible and by investing a great deal of hard work into physical therapy, being devoted to working with my doctor, and sticking to my diet and treatment regiment. It's certainly not been easy, and it's certainly not been fun, but through it all, I've learned a lot about trusting God and how to depend on Him and others.

20. A new and serious hobby I have taken up since my illness is photography. And interestingly, I've found the view of the world around me is literally different because of my being forced to slow down and sit down. I catch things around me that others can sometimes miss.

21. If I could have one day of feeling normal again, I would want to spend it with my family enjoying copious amounts of carefree fun at the beach. I want to run with my nephews into the ocean! If not at the beach, then at home grilling out, riding four-wheelers, walking in the woods, running and playing with my nephews, building a bonfire, roasting marshmallows to make smores, etc. I would truly savor having an abundance of energy, feeling good, and being able to move around freely without limitation.

22. My illness has taught me much about patience and perseverance. I've learned a great deal about God, trusting Him, and truly learning to walk by faith and not sight. Not an easy lesson. I've learned a lot about myself and about health and nutrition. I've learned to recognize and appreciate small joys in life; they really do keep you going. I've learned carrying a dream in your heart is essential to survival. And I've also learned the one thing this illness cannot take away from me is my identity in Christ.

23. One frustrating thing is the many pat responses I've gotten from people." But you look good!" or "It can always be worse, can't it?" or "If anybody could do this, it's you." I realize others cannot automatically know the ins and outs of living daily with a chronic illness and disability. Still, it can be frustrating to be told how good I look when I've just come out of 3 weeks of feeling my absolute worst. And clearly, I know things can always be worse, but it doesn't change my present circumstances. As for the last one, what choice do I have? I find those who have understanding usually do so because of dealing with an illness themselves or having experienced it through someone they love.

24. I like when people will address my illness and disability and not talk around it. I find children are refreshingly open and honest about such things. I welcome their curiosity and questions. My nephews have asked me many questions about why I can't walk and why I have to rest. They're certainly not intimated by a wheelchair. I also like when people will look me in the eye and acknowledge me. There have been many times over the years when I've been out in public and had someone turn away from me or direct conversation to my mother or whoever I was with. I now realize that has more to do with them than with me. Still, it doesn't feel very good. Conversely, there have been those who have gone out of their way to hold open a door, say hello, offer a smile, or strike up a conversation. So there really are some kind, thoughtful people in the world, and they far outweigh those who are not.

25. Some of my favorite quotes and/or scriptures that get me through tough times are: 

Psalm 34:18 "The Lord is close to the brokenhearted and saves those who are crushed in spirit" (I find a lot of solace in reading the Book of Psalms).

"...Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:6

"Trust in the Lord with all your heart; don't lean unto your own understanding. In all your ways, acknowledge Him, and He will direct your path." Proverbs 3:5-6

"So do not be afraid, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

"Hope knows that if great trials are avoided, great deeds remain undone, and the possibility of growth into greatness is aborted." - Brennan Manning.

"Never, never, never give up." - Winston Churchill.

"Sometimes God allows what He hates to accomplish what He loves." - Joni Eareckson Tada.

"It's not whether you get knocked down; it's whether you get up that matters." - Vince Lombardi.

26. If someone has been diagnosed with a chronic illness, I'd like to tell them to not compare where they are and how they feel with someone else; we all deal with this differently. I'd say it's alright to feel those roller-coaster emotions - scream, have a good cry, talk to a trusted friend, rip the newspaper to shreds or blast the music really loud; whatever helps. I would tell them to look to God for strength and hope. I'd also add that questions or struggles with faith are common in chronic illness, but they do not necessarily equal a loss of faith; it's okay to work through that. Don't be afraid or embarrassed to reach out and seek help when you need it. And I'd also say find a great online support system or resource like Rest Ministries; it can make a huge difference to connect with others who relate to what you're going through.

27. One surprising thing I've learned is that chronic illness is not simply black or white but many shades of gray in diagnosing, treating and living with it. And it affects the whole family, emotionally and financially. My brother once said to me, "Michelle, while this is physically taking place in your body, it's happening to all of us." I've never forgotten that. And it's true.

28. Someone doing something nice for you means a lot anytime, but that's certainly true when you're chronically ill. My Mom, my caregiver, does nice things for me regularly; they're just too numerous to mention.

Several years ago, before having to quit work, a close friend of mine came to my house and wrapped ALL of my Christmas presents for me because I was not feeling well enough to do it. Very nice.

A sweet friend of my grandmother's use to send me notes and cards every week. She did this for many years before she passed away. She would often just write something very simple but meaningful. Very nice. And speaking of my grandmother, she, like my mother, did so many nice things for me while she was alive. She would often make me homemade meals and goodies that only she could. Mostly, she and my grandfather would come to visit me every Sunday afternoon. I enjoyed spending that time with them. I love and miss her very much!

29. I'm involved with Invisible Chronic Illness Week because I want to put a face to what living life chronically ill is really like and help others understand that a lot of the suffering of chronic illness and pain is not often visible to others. Also, I want to share hope and support with those living with chronic illness and/or pain. Even though many days are hard, and even though some days are beyond brutal, you can get through it with God's help and the love and support of family and friends.

30. The fact that you took the time to read this list makes me feel you're interested and care. And for that, I say a deeply heartfelt thank you!

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