Wednesday, July 16, 2014

Update

It's been awhile since all the tests...
I have lots of good news!
My heart and lungs are great!  That is always the best news.
There is always a little bad....I guess so we can appreciate the good.  My MRI showed myopathy in several dime sized affected areas in my neck, shoulder,  and arm.  So in summary, the Scleroderma has affected my muscles and caused them to break down into lipid or fat cells.  Once they loose the muscle fibers they can't be replaced so what I lost is what I have lost.

The neurologist said I am going on treatment...that's exactly what Dr. Call did once we received all the labs.  I made the choice to stay away from prednisone for now.  I am on azathioprine 3 tablets a day for the next year or so.  I feel good about this choice.  I also went on 1 weeks worth of nifedipine to help with ulcers but quickly stopped that myself due to the migraines it caused.

The steroid has made me feel super tired....and I hate it!!  I could literally sleep all day.  I feel like I have the stomach flu...achy and crappy.  They tried to get me on Cymbalta which is an anti depressant that helps that crappy flu like feeling, but due to insurance reasons they wouldn't approve it. We spent all last month appealing it but no luck.

My last appointment went pretty good. I told him I went off of the nifedipine.   He explained that 90% of people that go off of it is because of headaches.   He suggested we try a new kind of antidepressant that works similar to cymbalta and would help with pain.  I am on effexor twice a day.

I don't mean for this to sound so negative but really I hate it.  I am even more tired than if I was just using the steroid.  He said to stay on it at least 5 weeks and see if my body adjusts.  I have been getting really bad headaches....I don't know if it's the heat, summer storms,  medication or what.  I decided last week to go off pop entirely.  I was a Dr pepper lover everyday if not twice a day but willing to do anything to start feeling better.  I am staying strong and enduring the caffeine withdrawl headaches.....blah!!

This week especially has been hard for me...I can blame it on the weather right??
When I feel crappy and tired strong feelings of insecurity overwhelm me.

Ok...I better end with something happy--
Tomorrow is a new day :)