Tuesday, July 23, 2013

My Thoughts on Living with Chronic Illness

I know I'm shifting gears. This is a crafty blog after all - my identified niche so to speak. But - I think it also serves as a memory keeping tool. It's another way to tell my story. So I've decided to do some documentation here on the blog about my battle with weight and chronic illness and my current attempt to get from under the muck.

I have an auto-immune disease. There are a wide range of diseases and conditions in this category - my particular condition mounts a pretty sophisticated attack on primarily my joints and connective tissues - which doesn't sound horrible until someone tells you that your have an unstable C-spine (neck). Then that shit gets real. I've had it sixteen years and have seen a lot of changes in both my body and treatments. I was only nineteen when the symptoms started - two months shy of my twentieth birthday. Within four months - I had a diagnosis.

I'm not sure people understand what a gigantic blessing it is to have to wait such a short time to get some answers. I've seen posts and read stories about men and women struggling for years to find a name for their pain. They have somewhat similar stories as mine. Negative rheumatoid factor. Bi-lateral pain in multiple joints. High levels of inflammation in the body. Overall body weakness. Insomnia. I was one of the lucky ones. I had quality medical insurance from my parents after my eighteenth birthday. I had the ability to go home to see a local specialist in the area where my parents lived. I had an experienced doctor capable and willing to use x-rays to diagnose my condition. He didn't mess with the negative factor. The downside was that I had developed an arthritic pattern of destruction in my joints which could be detected on x-rays in four short months - still I'm pretty lucky.

My first treatment protocol included immune suppressing drugs called DMARDS, pain medications, and prednisone. At the time, I had no idea what taking these medications would do to my body or what they meant for long term functioning. I do now.

In the last sixteen years, I've experienced a lot in terms of my illness. I've had great days - almost pain free. However, these are pretty rare. My immune system was pretty good at destroying my joints in the early days causing degenerative arthritis in my feet and hands. My body began to both destroy and fuse my joints at the same time. I've had one surgery - on my right foot - and am in desperate need for another on the left foot. Unfortunately, I had a pretty rough time of it the first go around and am in no way ready to leap into another surgery experience. I've been through several advancements in treatments and now get regular infusions to suppress my immune system.

I've had days when I've shrieked with pain the moment my feet have hit the floor. I've had to hold on to walls to get down the hallway at my work place. I've had terrible side effects from medications which have required additional specialists and as you might have guessed - more pills. It takes approximately 31 pills to keep this body running each day, 42 on Sunday. I've gained over a 100 pounds in the first few years after my diagnosis, partly due to long term prednisone use and extremely poor eating habits. I've dealt with depression secondary to a medical condition. I've had to endure the blank stares of people I know and love as I explain RA and that it is not a direct result of my obesity. I've had to listen to people talk about how my RA will go away if I lose weight - like my immune system will magically heal itself (a story for another day). I've faced the never ending process of not knowing what each day will bring. However, I'm learning new and promising things all the time...

I started listening to a nutrition podcast recently which talked about the link between nutrition and autoimmune conditions. I've been doing some research and it turns out that most of your immune system (60-80%) can be found in your digestive track - specifically your small intestine or gut. There are some that believe the key to treatment, reduction, and elimination of symptoms lies in healing the gut. And this is where it gets a little confusing. I've heard a number of different recommendations on what nutritional approach is best, including:

Gluten Free Diet
Gluten Free, Casein Free, and Soy Free Diet
Gluten Free, Casein Free, Soy Free, and Corn Free Diet
Paleo Diet
Paleo Diet (auto-immune protocol)

In addition, there are different protocols and in some cases it includes eliminating a variety of kinds of food. When I contacted my doctor regarding trying a Paleo diet, he had never heard of it. Unfortunately, there is not a lot of scientific, empirical research out there on nutritional treatments for many autoimmune conditions. However he did have some patients that had experienced success with a gluten-free diet. I bought this book and have started to read it. I also have books on gluten-free eating. I started a board on Pinterest devoted to Paleo and have bookmarked several blogs. I've actually thought about going gluten free for approximately two years - but I just can't imagine doing it. I don't cook. I love cupcakes and Bread Co. How am I supposed to live my life without gluten - that IS the question. Don't even think about getting me started on casein free, soy free, and corn free. It's information overload. It seems unlikely at best...if it weren't for this one thing.

Do I love cupcakes more than mobility?
Do I value food more than my family or myself?
Do I want to get better? What exactly do I have to lose from giving it a try?
What if doing this meant I could do the thing I thought I couldn't? What if it changed everything?

So I'm bound and determined to at least try out this new way of eating. It's going to require A LOT of changes. I'm not sure anyone believes I can do it. I'm not sure I believe I can do it. I'm currently in the contemplation stage of change. I could try to delude myself into thinking I'm in the preparation stage; however, I'm currently reading and researching as I drink a Venti Soy White Chocolate Mocha with no whip cream. Can you see the irony? I have quite a long way to go. To be completely honest - I have no idea how I'm going to start.

I just know that I need to do something else. I can't continue to let the pills and pounds pile up. I want to be able to walk with my nephews and niece. I want to be able to run after them. I want something better...and maybe, just maybe, that is worth more than a cupcake. I sure hope so. It's time to be a more active participant in my treatment plan. I plan on doing periodic blog posts as I begin to travel down this new path. My first goal is to provide relief to my digestive track. I'm not thinking about the extra weight at this point. I think it's a good start. Actually, I hope it's a good start.

Please note: I will be doing a series on my struggles with auto-immune disease. These entries are reflective of my experience only. I am not a medical professional. Any content should not be treated as a recommendation or endorsement.

Crafty Update: I haven't forgotten about CHA week. I'm just trying to wrap my head around how to categorize all of the fabulous products. I'm also trying to wrap my head around the fact that they won't all be coming to my house - no matter how much I might want them too. I wish there was a scrapbook fairy - wouldn't that be fantastic? Anyhoo - hope everyone's having a great Tuesday. Until then...

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