
Today was my monthly checkup with Dr. Butler. The GREAT news is that I'm going down again on my Prednisone from 12.5 mg to 10 mg starting tomorrow. The other GREAT news is that she is prescribing a brand new treatment for me to try that DOES NOT INVOLVE DRUGS!! It's something that has just recently been approved by the FDA; some sort of gadget that goes on your knees and hands while you sleep and sends electricity into the joints. Dr. Butler said it sounds wacky, but she knows

Another good peice of news is that the skin on my back has finally healed, so I can go back to the pool. Since the pool is the only type of exercise I'm allowed to do, this really means a lot to me. I've gained so much weight on this nasty Prednisone over the last 3 years that I desperately want to lose. Even if I can only last 20 minutes in the pool, it's at least a MENTAL victory for me.
My back is another story. My L5/S1 vertabrae are "bone on bone", according to my doc. I am in excruciating pain most of the time, even though I take 60 mg of oxycontin every day and 6 Vicoden for breakthrough. It was so bad yesterday that I cried during my entire appointment with Dr. Becker. The doc says I really need surgery, but because of my health conditions I am NOT a good candidate for it. We are doing a series of 3 epidurals and praying for a good

I also saw my Opthomologist today. I have to see him every 6 months because of my Sarcoidosis

Oh and one more update from last week - the Dermotologist says the lump on my forhead is a "bony cyst", and is harmless, and basically I just have to live with it. Ok by me - at least it's painless. I think all these weird bumps on my head and shins are from the Sarcoidosis, personally, but heck I don't have the Medical Degree, I'm just a humble Mathematician. On the other hand, maybe Mom is right and I'm sprouting "Prednisone Horns". It might actually be good if Prednisone gave you horns because they might warn the people around you about how nasty and volitile you've become on the inside from that poison.

So let's see, that updates the Rheumitoid Arthritis, Degenerative Disc, and Eyes and strange growing bumps. I won't see my Pulmonologist again until next month to get an update on how my lungs are doing. At my last visit he told me my disease (Sarcoidosis) had progressed to Stage 3 (ugh). The latest statistic I've seen on Sarcoid is that 5% of people who have it die from it. It's a far cry from what they told me in the beginning - and it's appalling how uneducated the medical profession is on the insidious nature of Sarcoidosis when it is systemic.
On the caution side, I fear I may have another ear infection. I'll be calling Dr. Levin tomorrow to take a look at it. If I do have one, it puts next weeks chemotherapy (Remicade) at risk, and I don't want that!
Like Gilda Radner said, "It's always something"..... In my case it's always something, if its not a disc popping out, its horns growing from your forehead.... (If you watched Saturday Night Live in the 70's you'll get that).
Well thats about all I can stand, so I'm off to take some pain pills and try to get some sleep. ZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzz.
1 comments:
HI, Jeannie; I also have L5/S1 bone on bone and am at Stage 4 with Sarcoid. I do relate to how you are feeling and it is very frustrating but, as all of us, we just keep "keepin' on". I remember Gilda. Funny lady! I am praying the electrical impulse"gadgets" help your joints. If they do, let me know! Take care, Kristi
Post a Comment