Now I am really excited about this blog! Turns out it is much easier to use a keyboard then to use an iphone but had to go with the impulse last night!
So, now I have been thinking. Where do I bring you all into my story? I have decided to start at the time of my diagnosis but as any of my friends will tell you, “SQUIRREL!”, I am easily distracted. I have so many stories about my life. Some involve the illness, many don’t. For whatever reason, I have been blessed with a life that my closest friends have told me should be recorded. Is that a good thing? Eventually, you can tell me. Expect to read about my journey with Scleroderma and Tubie life, as well as some of my other life experiences. Life with a chronic illness can be very depressing, this blog will not. I am a fighter and love to look at life through positive eyes.
Now, back to my diagnosis. It was about 6 years ago. As with most moms (and adults in general), we put our own needs last. I was in a lot of pain for a while and finally decided I should find out why. Like a good internet user, I had researched all of my ailments and believed I was either really constipated or had Lyme’s Disease. Went to the doctors and who the hell knew what a can of worms I was opening. But, so glad I did. After many specialists and enough blood drawn to question what they had left me with to function, I got a call. I will never forget that day. Let me not minimize the process. The tests and appointments went on for about 6 months before the call. I was so frustrated during that time that I will just gloss over it. The call. I was at work, the local rheumy diagnosed me with Scleroderma on the phone. I,of course, had read about it and heard about Bob Saget’s sister that had died from Sclero. I didn’t want this illness. What if I hang up? Maybe he’ll call back with a different diagnosis. Then the line that has been burned into my head. The doctor told me, there is no cure. There is nothing we can do for it. You should take Tylenol. Excuse me? What the hell are you talking about?! I call bullshit! And good thing I did. I immediately went to my family doctor and we started the process to get me into a good hospital to find out facts.
That’s a whole different story. After waiting to get accepted into Johns Hopkins Sclero program, I found out my insurance wouldn’t cover it. Scratching my head and wondering what I did to piss God off, I made an appointment at Jefferson Hospital. This is when I met my current rheumy. It was a good day. No Tylenol. More tests. More blood drawn. More answers.
Woohoo! My life is a blog!