Something else to give over

Let me start by reminding you that my brain tumor was caused by the disease Neurosarcoidosis which is a rare disease found in only 10% of people with Sarcoidosis. There are very few doctors in the country that treat the disease. Even those doctors have very little information about the illness, therefore treatment is very difficult.

Yesterday’s doctor’s appointment was a bit frustrating. Although my appointment was at 11:30 p.m., I did not see the doctor until 1:45 p.m. Yes, that’s 2 hours and 15 minutes later! I understand that sometimes doctors can fall behind and have a bad day, but I would have loved to hear an apology! They would have cancelled my appointment if I was 15 minutes late, but I got nothing for my more than 2 hour wait.  I was getting ill waiting because I had not eaten since 7:30 a.m. I also was in a lot of pain waiting and took some meds on an empty stomach. Not good!

I also wasn’t happy with the visit. I’m glad my diagnosis isn’t as bad as it could have been, but, I did not get definitive answers for my symptoms that still raises concern. UUUGGGHHHH!!

The Brain MRI did not show brain damage. THANK YOU LORD! However, the spine MRI showed I have a bulging disc in the C5 Spine (neck area). It's just something else to give over to there Lord.  I was nervous when the doctor asked to send the results to a surgeon. I do not want to go under the knife again!  A less aggressive treatment will be administered; therefore, I will be having an injection into my spine as soon as I hear back from the doctor that will be performing that procedure. Prayerfully, this will relieve the pain and back spasm and surgery will not be necessary.  My doctor doesn’t believe the disease (neurosarcoidosis) has spread to my spine.

The headaches I’m experiencing can’t be explained. We are hoping they are caused by the disc and will leave after the injection. My facial swelling and pains can’t be explained, but I do have an appointment with my neurologist in two weeks. My eye issues---who knows! It’s frustrating when you have no answers, but that’s what happens when you have a rare disease.

I’m also am dealing with a flare up of bursitis in my hip. I have some PT exercises to do. This will be interesting with an excruciatingly painful back!

Additional rest is not the cure. It doesn’t help or harm. I get plenty rest! So, back to doing what I do. SERVING and doing what I can, when I can, while I can.

I thought I’d add a picture of me before and after steroids. The December 2014 picture was taken 2 weeks after I began taking steroids. The other picture was taken 3 weeks ago….so that means I have a few more pounds on me. The fat chick has emerged! LOL!  UGGGGHHHH! Good news! The doctor decreased my daily intake of steroids from 60 mg to 30 mg!