This is the blog that I would have to say is “Just the Facts”, not at all fun. But also necessary to know. I know this doesn’t explain specifically a day in my life but don’t you worry your sweet little self about that…there is always tomorrow. Hint, hint
If I am going to get a disease, it would have to be one that no one has ever heard of and no one can pronounce. Let me tell you about Scleroderma pronounced (skleer-oh-DUR-muh). Scleroderma is a an autoimmune disorder that the body’s immune system turns against itself. In Scleroderma, there is an overproduction of abnormal collagen (a type of protein fiber present in connective tissue). This collagen accumulates throughout the body, causing hardening or sclerosis, scarring or fibrosis, and other damage. On a bright note, my skin looks marvelous, not a wrinkle on it.
For some there may be hardening of the skin. For others, it involves other body organs – lungs, heart, hands (through Raynaud’s which affects the circulation of blood to the extremities causing numbness, gangrene and sometimes loss of digits. On another note, I have really bad Raynaud’s. I get digital ulcers and ultimately get admitted into the hospital to go through an infusion that opens the vessels to help promote circulation and healing. On a funny note, I have taken viagra for this same condition. It didn’t help me but boy did I have a stiff neck. Haha! Get it? Stick neck, viagra?! I digress. It attacks lungs causing fibrosis, shortness of breath, coughing an difficulty breathing. It can also affect the kidneys. And the GI tract is commonly attacked. In my case, I developed gastroparesis (stomach paralysis).This prevents my food from digesting.Thus, the addition of my tubie friend. I feed through a tube into my small intestine and drain my stomach through another tube. I also have esophageal dismotility causing me to aspirate into my lungs. For me, I have lung involvement (Pulmonary Fibrosis), Raynaud’s (digital ulcers), Sjogren’s Syndrome is also an auto immune disease which people’s white blood cells attack their mositure producing glands. This also causes dry eyes, dry mouth and fatigue. I also have a mass in my brain which just likes to mess with my head, no really, brain fog, ringing in the ears, etc. I once went to a doctor that chuckled when he told me that I had hit the negative health lottery. I smiled and said Uh, Thank you?
But allow me to rant for a minute. This is my day today. Woke up dealt with my tube, I fed overnight last night. Took a handful of my medications and went into super mom mode. Child B had locked keys in his dads car ignition with no spare. I went to his dad’s house and called AAA to save the day. Little did 6’10” Keith know when he pulled up in the tow truck that he had just entered the “clusterest” of all cluster F’s. He was eventually (30 minutes later) able to roll down the window of my ex-husbands truck with some long metal contraption and open the car. One obstacle down. I haven’t told you the other part, Child A broke down on the side of the highway and his car was sitting on the small shoulder of the road waiting to be rescued or towed away by the police. Figured we should avoid the latter. Keith, what a guy, offered to follow us there and tow the car back home. Of course as we approach the car, Child B says, hmmm, we probably should have brought the keys with us. Oh, Keith had another surprise waiting for him. He popped the lock on that car too, only to have the most annoying alarm blaring obnoxiously. It finally stopped on it’s own. We didn’t even know the car had an alarm. Car was pulled onto the tow truck and away it went. As we are following, my air pressure indicator light came on in my car. ARE YOU FREAKING SERIOUS? Without going into the whole story, I had 2 blow outs and a cracked rim on my new car last week during vacation to the tune of $850! And now the air indicator light?
How much wine can I get through my feeding tube?
Woohoo! My life is a blog!