#27 Mid Summer Nights - Mare

The last few weeks have been very difficult. The discomfort. The waiting. The uncertainty.

First off, my whole damned body hurts. My bones hurt. My joints hurt. My stomach hurts. And my head hurts. I have had the worst migraine headaches.  And the indigestion.....ya'll I am up at all hours of the day and night, pacing back and forth. I have to raise my arms over my head and walk....walk.....walk. Most nights, I end up puking to relieve the acid build up in my stomach. And it burns from my stomach ALL the way up my esophagus and throat burning the inside of my mouth. Most often, it causes sores in my mouth and it's eroding the enamel on my teeth.

At the end of June, I went to see my new Nephrologist, Dr. Straight-Laced for the very first time and he managed to scare the HELL out of us. He asked me to highlight all my previous medical problems because he thought I might have Secondary FSGS rather Primary FSGS. He thought it possible that I had an autoimmune disorder like Lupus or Rhuematoid Arthritis.

Luckily, I was told today that all the tests were negative. I don't have an autoimmune disorder.  But my cholesterol is very high. So I have added yet another medication to my daily intake. Yippee....NOT.

My protein levels are at 395 per 24hrs which is good. 180 or lower is considered remission, but the doctor doesn't think I'll ever attain remission. He basically told me this is the best I'll get.  And since he doesn't like Cyclo, and since I've been on Cyclo for almost a year, he thinks now is the best time to ween me off of it. I'm to start my taper and on Sept 1st, I'm to cease all Kidney meds entirely. I have a follow up appointment with him on October 15th. He said he fully expects me to have a hard relapse, which might require a hospitalization, but....we'll see.

He took me off of the Protonix because it causes kidney and liver damage and quite frankly, I don't need that. Hell, it was hit or miss half the time anyway. No loss there. He put me on Pepcid x 2 daily.

I have to go have a head CT on Monday. The headaches.

I might have to have a sonogram. The knot on my backside that Dr. Asshole and Dr. Quack said was a cyst is an infected Lymph Node.

Oh, and I chopped off ALL of my hair.  It was dead. The disease and the medications have killed my hair. I got tired of having to wash the puke out of the ends and amazingly, my hair is now kinky curly! My hair used to be as straight as a board..... not anymore.  So I cut it - MYSELF.

I'll post pictures at a later day. I'm not feeling photogenic right now.

Next Neph Appt is Oct 15th.

Later ya'll.