Sunday, March 3, 2013

Life sentence

Being diagnosed with a chronic disease can be devastating. Whether you're a toddler, tween, teen or almost adult, it can rock your world. Knowing the statistics. Listening to the news, the billions of dollars spent on others with your same disease state. Constantly being screened for potential complications and issues. Having your feet stripped down and examined by the Dr...I think it's just plain humiliating. I mean, sometimes I just can't make it to get a dang pedicure, mmmmk, doc!?

But what happens when you're faced with yet ANOTHER diagnosis. Another blood test that rocks your entire existence. Being told you must take yet another life saving medication just to function daily. Sometimes it's almost too much to bare. But wait...oh isn't finished with you. Your immune system is in a full on revolt, and launches a destructive war against yet one more bodily system. Why is this happening? Why did I get chosen to bare the burden of this auto-immune hell???

Truth is, once you're diagnosed with one autoimmune disease, you're very much predisposed to others. It's like a genetic lottery. Will your number be picked? And again? What about one more time? Disease grouping is common when we look at autoimmune diagnoses. Crappy part is, all of these disease states are relatively rare, and barely measure as a blip on the public health radar. There are multiple specialists associated with each diagnosis, which means more cash spent on copays, medications and treatments. T1 diabetes has brought most of us here, but how many of you also share your life with an additional AI disease? Rheumatoid Arthritis, Lupus, Hashimoto's Thyroiditis, Graves' Disease, Addison's, Vitiligo, Celiac Disease, Crohn's, Ulcerative Colitis....and these are just the more common.

I personally struggle with my hand basket of random autoimmune issues. Type 1 since the age of 9, Hashimoto's not long after the birth of my first son, Celiac Disease not too far behind that one, and the suckiest by FAR: a rare hybrid of Rheumatoid Arthritis and Ankylosing Spondylitis. I struggle with anti-inflammatories and immunosuppressants trying to treat the pain while also attempting to slow down the damage being done to my body. It ain't fun.

Some days are easier than others. But something as simple as a cold my kids brings home can send me to the hospital..where they want to shoot me full of steroids..which affects my 'betes. So, I feel like this delicate juggling act can disrupt with the tiniest of interferences. There are days I can barely get out of bed, or nights that I sleep for 12 hours straight. It has affected my ability to be the kind of mother to my sons that I wish I could be. That guilt then manifests into a crippling fear that I have passed along my crappy genes to these guys. Yeah he got my amazing dimples and winning personality, but will he also have to face these struggles and burdens as I have? It takes my breath away at times. The only thing that helps is to sneak my fingers to interlace with theirs while they sleep. And listen to their breathing, and know that I am not in control of these things, and all I can do is take this life one day at a time. The advances made in medicine over the last 20 years have been amazing, and I so look forward to what the future holds for me, my husband, my kick ass kids and my patients.

Know the signs and symptoms of other autoimmune disorders. Early detection and treatment is key, just like with T1. We, at the endo's office, routinely screen you for many of the common may not even realize it. And if you find yourself a sudden collector of suckage, much like myself, seek out the love and support of others! My life and health have been enriched by the thought and care of my husband, friends and family. They can't understand what I'm going through, but they sure know how to make me laugh and which foods make me poop my pants and which aggravate my joint pain. I am beyond a lucky girl.

This week I celebrate my 30th year on this planet, and I am enriched and humbled by all of you, so thank you for your kind words, support and accolades. Being here, now, is pretty damn awesome.

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