Saturday, June 14, 2014

When a Diagnosis Changes Everything

I argued with myself on whether or not to even write on this topic. I say this because not every life changing diagnosis is one that marks your days. Some life changing diagnosis' are the ones that change your life from now on. Others change your near (or distant) future. Although the one that marks your days is probably the most painful to hear, I believe all of them have their own burden.

As a teenager my mother was diagnosed with Multiple Sclerosis, a disease that affects the brain and spinal cord and is often debilitating. This news came to our family in a rather shocking and unexpected way. A simple bump on the head at a theme park lead to a realization that your whole life is changed. Things like this happen on a daily basis. Perhaps not to you, maybe not even a loved one, but someone, somewhere is having to cope with a life changing diagnosis. Someone's loved one is having to face changes they never even imagined.

(For those who are curious, my mother is doing very well. She stays rather active, despite  what doctors see on her scans and tests. She is a testament of faith and the idea that being a grandparent keeps one young. She often accredits her endurance to my two kiddos whom she keeps daily during the school year.)

Now, I am faced with own mortality. The realization that I am not truly a super being and I wont be able to do everything forever. About a month or so ago I re-started my journey to find the cause and relief to my regular and at times slowing back pain. Since a fairly young age (early teens), I struggled with regular pain in my upper back. I rarely put any though in the matter due to being well endowed at an early age along the bust. As time went on these symptoms worsened and I began to search out some relief. After trying everything from chiropractic care and braces to physical therapy, I got desperate. I finally went and saw a spinal surgeon who ran me through some pretty extensive tests and was able to get me in the right direction.

Sparing you all the extra details, I was finally given a diagnosis. I am sure you can guess by my post title, that it was not the one I expected to get. I was hoping for a treatable condition that could be reversed and I could go on with my attempts of doing it all. This is the furthest thing from what happened. The original diagnoses of Degenerative Disc Disease and arthritis seemed hopeful. Yet in the end, my hopes were shattered and there was little I could do.

I was diagnosed with something called DISH- Diffuse idiopathic skeletal hyperostosis. This in its self was even not so bad, although it has no cure. Where my life changed is this, this condition is not all that uncommon, what is uncommon is my age. Most people diagnosed with this are in their late forties at the earliest. This disease can be quite progressive so the older age means less affected time in life. This is not the case for me. My digression started no later than my mid teens. To understand what I am saying you need to know what this disease does. Basically, as discs in your back degenerate, your body creates spurs and bony-calcium deposits that form over the vertebrae. This extra calcium can also end up in other joints as well.
(Example) Source

So, how does that really change my life? Well, my back is completely fused together from vertebrae 6 to vertebrae 12. I have have arthritics in my hips, knees, and other joints as well. Because of the early on set, it is clearly progressive. This means that if I already have this much damage in ten years, what will the next ten hold for me? Amazingly, I have little to no damage to the weight baring section of my back. This is one major blessing. However, being overweight increases my risks for a faster progression. The faster I could lose, the long expectancy I would have for mobility. This in itself is a hard task because the recommended treatments for such immediate weight-loss are not covered by my insurance. Beyond that, there is nothing they can do to change what is already done. All I can do is treat pain. I will be on a pain medication regimen my entire life. I also have appointments to see doctors who specialize in just dealing with pain.

Is the pain really that bad? Until you really know me, you wont understand what I am saying here. I have a quite a high pain tolerance. I've been through a lot in my short life. My mother has seen me on death's door more times than a parent should. I have a pacemaker. I am an old soul in an old body. The only thing young about me is the years I've lived. Yes, this pain changes my life. I come from a family where asking for help was rare. We are a get up and do it yourself crew. I have a strong desire to do things on my own. However, I have gotten to the point I can not. I can not carry my children for any length of time. I can barely get out of bed in the morning. Rolling over in the night can at times me torture, causing spasms I cannot explain. No, you wouldn't know there was anything wrong when you see me at the store.That is because over the years I have learned to hide pain and push on through. Its both a blessing and a curse I received from my mother.

How is this life changing if you already deal with it? I wont always be able to do this. At some point I will lose some mobility. Because this is bone that is creating the problem, I cannot just push through forever. At some point this bone will be in places that will change the way I do things. These changes could be earlier than I really want to thing about. At this point, I may be able to see significant difference by the age of 37. Do you realize how young that is?

So yes, I didn't get a number of my days, but at first, it felt like it. I am fiercely  independent. If you don't believe me, ask my husband. Now I am having to consider things like disability insurance and handicap parking. This is not something I ever wanted to consider. Its not something I ever expected to have to face. Yet, at the age of 26 I have faced more adversity than many do in their lifetime. I have no doubt I'll make it through. Every time I get down about it, I consider my mother. Its just hard now.

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