Hello there to my friends, fam and anyone reading.
I am new to this blog thing and this is my first official blog post. So forgive me if I make any mistakes or any Blog faux paus. I hope to try to post once a day, but if that proves to difficult - than I promise to post at least once a week.
I am starting this blog in the hope that others with Scleroderma will find it and be able to see what my life is like with this disease.
When I was first diagnosed I was constantly wondering..."Is this feeling Sclero" or "Do others feel like this" or do others "struggle with this". I must say you feel alone because your sense of normal has changed, only you are not sure what your new "Normal" is with this disease.
This disease is so rare, that not many people have it, which adds to the alone feeling as there are not many to talk to about how you feel, or are supposed to feel, or validate that what you do feel is okay.
What I have found is that your new "Normal" is always changing anyway.. as this disease is a series of losses and readjustments..which in a way makes it not only a physical disease, but a mental one as well.
Although I suppose any Chronic Illness does that. Chronic Illness has a way of changing your life and your life priorities... so i try to do it with a smile and a sense of humor which I hope you will see when I begin to share my life with you.
Disclaimer: I can be very sarcastic... so you have been warned : )
Well I guess I will share a bit about myself and my stats. I am a 40yr old female and I live in Arizona. I was diagnosed with Limited Systemic Sclerosis/Scleroderma in October of 2009.
I knew something was "wrong" after I participated (kicked ass) in the Susan G Komen Breast Cancer 3-Day walk. I felt like I could just not recover. Granted it is a 60 mile walk in 3 days, but I was an extremely active person before. I trained for the walk (10 miles day) and it was already my habit to work out at the gym 5 days a week, so physical exercise was not new to me. This fatigue was different. I felt SO tired that I wanted to cry. The fatigue was almost tangible and so severe that it almost hurt to be tired.
I remember feeling like a rock start if after work I was able to do and fold a load of laundry. There were days when I could not clean my house. I would call my friend (at the time) and tell her "I just cant do it" - I think I was almost searching for validation that it was "okay" and perhaps that she had been there too....
Then I thought that my fatigue and joint aches were depression. I do NOT do well tired. Believe me, I am "Type A all the Way". So as simple as it sounds it was the fatigue that brought me to the doc.
My doctor (I call him Dr. Feelgood because he is so nice) was open minded enough to listen to me and hear me, and for that I am forever grateful. He did some lab work and my ANA came back positive. I was then sent to a rheumatologist who did a reflex panel which came back with Centromere antibodies - and from there sent to the Mayo Clinic where I was put through the ringer - and Wala! The rest is history. Limited Systemic Scleroderma.
Well, actually that's not all, but I have to put some stuff on Craig's list, then I promised the kiddo a movie, so that's all for now. I will post next about my Mayo Journey. Wow - some of those test were no picnic!!
Anyway - Bye for now.
Peace and Love