Thursday, August 27, 2009

Cold Feet... Good Stuff!

The cold water really appears to be helping! Doing much better. Hope it keep going good, I’ll let you know.

Monday, August 24, 2009

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.


Thursday, August 6, 2009

Bump in the road

The adjust time I talked about in the last post just never came. I started noticing things going in reverse though I really didn’t want to accept it. I probably let the worsening symptoms going longer than I should have before I talked to the doctor but I was really hoping that my body would adjust. In the end it did, just in the wrong direction.

I finally gave in and called the doctor. He told me to increase the Imuran (Azathioprine) by taking two tablets in the morning and then one in the evening. This increases the dose to xxx per day. He also had me going back up 2.5 mgs on the Prednisone so I am back to 7.5 mgs. With the new doses I don’t seem to be getting worse, and the road back to getting where I was seems to be a slow one. I really have a lot of pain in some of the bones of my feet, especially the left one. The strange thing is that it isn’t in the joints like it was in the past, it is in the actual bone. You can see bright red where it hurts, and sometimes it REALLY hurts.

When the medicine messes with me, or when I get frustrated about my weight at times, I often find myself thinking about just going off the drugs and dealing with the pain. Sometimes I wonder if the side effects of the Prednisone aren’t worse than just dealing with the Sarcoid. Then… when the Sarcoidosis flares up and the debilitating pain kicks in to the point of not even being able to walk across the house… that’s when I am reminded of what the drugs are actually doing for me. All that being said though, if Imuran give me cancer… that would not be worth it!

My sister’s test results came back and it turns out that she does have Sarcoid after all! Crazy stuff. That makes three members of my family with Sarcoidosis. They have her on high levels of prednisone and she is going through the ringer. She calls me a lot and it is good to help here through the first phases of this. The high doses of Prednisone really mess with you mentally and I think it is really good for her to be able to talk with someone who has already gone through it. I can commiserate with her and help assure her that what is happening to her is normal and not to worry. That stuff can really make you wired up and mess with your thinking. She is doing well for now and I hope all goes as good for her as I think it has for me.

Some good news though… I have lost about 15 pounds unexpectedly. I’m not sure why, I haven’t eaten any better. Perhaps it is the activities of summer? Don’t know but I’m not complaining. I’m loving that!