"Well... You know the glue that holds your body together? Mine doesn't work."
Typical question and answer with me. Sometimes this is just the easiest way to explain my illness and ailments. Most people are satisfied, but some inquiring minds want to know more. They want to know why, how, and what can I do to fix it.
I wish I knew; I guess God thought He made me well enough without glue.
Through genetic defect, most likely. (Thanks, mom and dad.)
Absolutely nothing. All I can do is treat my symptoms and hopefully keep myself from getting worse, but most likely, I won't be getting better.
So anyway, for you that care or want to learn something new, here is a slightly deeper explanation of one of my main issues, the connective tissue disorder. (We'll save the postural orthostatic tachycardia syndrome for later. Learn to say it, learn to spell it, then we'll talk.)
So my collagen (glue) is defective. Collagen is throughout our entire bodies, around muscles and joints, protecting them and keeping things bound together. Without this working properly, you begin to fall apart (literally) from the inside out.
Lack of collagen makes you stretchy everywhere. Internal organs, muscles and joints, and even skin. Everything seems to be a little more elastic and you can bend and move far past the normal range.
For example:
My ankles can almost lay flat on the ground due to the lack of collagen and ligaments in them.
My elbows hyper extend backwards.
My aorta (largest heart artery) has an aneurysm, making it twice the size of a normal person's.
My skin tears, bruises, and bleeds easily and heals slowly.
My knees, hips, wrists, ankles, elbows, toes, etc. pop a lot and sometimes even move out of place.
I actually am falling apart or as my Grandad says, "coming unglued."
So what do we do to "fix" my problems?
We maintain current ability and stability. We train my body to stop hyper extending and moving past the norm with physical therapy. We wrap and support joints so they won't come out of place and move around, causing pain.
We treat the symptoms. If I have pain, I take medication, I ice, I heat, I wrap, I compress, I stretch, I wear a pain patch, I do exercises, I wear a tens unit, etc. Anything that reduces pain, even just a little, is worth a try.
We keep working towards answers. We don't give up and settle for the answers of "we don't know what is wrong and we can't help you. Because I believe that somewhere out there, there is a doctor who will name my disease with certainty and will hopefully help me to feel better. Until that official diagnosis, we continue our search.
We participate in experimentation and research. When any opportunity arises to be a participant in a research study or experiment, I accept. Whether they need my blood, pee, spit, or any other bodily fluid, I freely give it in the hopes that these researchers will find a common genetic malfunction in me and the countless others suffering from a connective tissue disorder. I hope they never give up trying to find the genetic defects and maybe even a cure.
We pray. Prayer always helps whether it is for peace and comfort or healing, it makes me feel better. A spiritual well being brings on an emotional and physical peace that I can't explain.
We live life. I don't sit idly on the sidelines of life watching the world pass me by. I participate in as much as I can and live my life to the fullest. I enjoy what I can and watch what I can't. I know my limits and don't push too hard, but I don't give up and do nothing either. I have a happy balance and it works for me. I would rather have a short and well lived life than the longest one of watching everybody else live without me.
For now, that's all we can do, but it works for me. I stay happy. I'm in good spirits. Sure sometimes, I have my moments where I just need to cry or vent to a friend or pray a tearful prayer, but those moments of weakness give me strength. And that strength that God gives provides me with everything I need to just keep pressing on.
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