#37- FSGS Update

So I went to see Dr. Straight Laced this month (March). My cholesterol is horrible. Which makes sense since I quit taking the Pravastin about a month ago. I take so much medication that I forget what they are for. When the Rx run out, I simply didn't call the doctor to renew it. I did the same thing with the Thyroid medication. Maybe I'm just getting lazy.

My protein levels came down since October. They were over 1,400, but now about 791, but not enough to put me into remission. I'm doing pretty good. Still under 150lbs. No swelling as of yet. Doctor is starting to taper my Cyclo again. I simply can't figure him out. He knows that my levels are going to go up when I taper - Ugh

Apparently, I'm getting Neuropathy. My feet and hands get really cold and burn like hypothermia, the feeling of needles in my hands and feet. They go to sleep randomly and tingle. I have very little feeling in my extremities as it is and when I do, it's generally pain. I've been losing toenails with little or no blood and little or no pain. I get cut and I don't remember how I do it. I have bruises and I don't know how I got them. I fall. I've fallen twice in the last month. Total face plants in the grass. Thank goodness I didn't fall in dog poop.

Anyway, I have to go in May to see a neurologist (AGAIN) to have an ENG test done. I guess it's to determine what type of neuropathy I have or if I have it at all.  And yes, the Cyclo could cause it. Which means that I might have to stop the Cyclo.

I got turned down for SSD again.  Apparently, I'm not sick enough yet. So, in the  meantime, we're trying to sell everything we can get ahold of....My lawyer is going to appeal. He said it will be another 10-15 months before I hear anything. More than likely, I'll have to have a hearing with an SSD judge.

You know....it's hard. It's hard knowing that I have a disease, a disease in which there is no cure, a disease that can kill me. It happens every day. People die waiting on organs. People die on dialysis. People die because they can't handle all of the toxic medications that we have to take to control this mess. People die from complications of illness, infection, and other diseases caused by this condition.

This disease is lonely. People who are well don't understand how lonely it is being chronically sick. We have no one inside our families that can relate. No one who understands how we feel. The pain. The embarrassment. The isolation.

Oh well. One more thing for me to work on. I'm blessed to have the Inspire Community though. They are a wonderful bunch of people WORLDWIDE that has the same condition, same symptoms, take the same medications.  With them, it's not so bad. We share tears. Laughs. Embarrassments. Life.

One last thing. In February, we added one more to our family. Sophie! Here's a picture of her, then one of her and Boudreaux together.