Rocky Road & New Hope

As you know from my last post I have been having a bumpy road. My ankles and really been hurting and several bones on my feet have swollen up and I haven’t been able to get them to settle down. Even with the increased medicine I haven’t been able to get back to where I was a few months ago. The good news is that I have been able to hold my ground and haven’t gotten any worse. I think it may be for several reasons.

1. Perhaps I waited too long to report that the lower dosage wasn’t working and it allowed the illness to flare up a bit.
2. I have been too active this summer with scout trips, family vacations, etc.
3. Maybe both of the above.

I don’t know yet and I’ll have to wait and see.

I did find something that seems to help though. I began putting my feet in cold water in the evening before I go to bed and in the morning after I take my shower and it REALLY seems to help. So much so that today I did very well. Even though I still have red spots on my feet where I have been having problems they don’t hurt to touch like they have in the past! It is too early to tell if the reduction in pain and tenderness is due to the cold water or not. It does make my feet feel better though, and at this stage I would strongly recommend it. I basically run them under cold water until it doesn’t feel cold any more. (About 60 seconds) I’ll let you know how this pans out as I keep doing it. So far it looks promising.

I am looking forward to seeing the doctor again to talk this over, but I don’t want to increase the Imuran any higher. I think that this is exactly what the doctor is going to want to do, and so far he hasn’t been one to “discuss options”. When I tried to ask about this in the past he has simply said “Perhaps you should get another opinion”. If he prescribes more Imuran I probably will. Whatever the problems are that come with Sarcoidosis, cancer is worse! Imuran increases your risk of getting skin cancer among other problems, even in low sunlight. I may be okay with the risks if someone could explain to me what they are, but so far no one has been able to help me quantify how much of a risk this is. I find this very frustrating. For now I am keeping the 75+ SPF sun block on and staying out of the sun. My legs are so white I think that they could give other people sunburns if I were to walk around in shorts! Ha ha!

So for now it is saying the course and holding ground. I think I am starting to turn the corner with the cold water, or perhaps it just takes a while for the higher doses of Imuran to kick in. Either way I am hopeful.

Michael