Specialist day

Today was the day I went to the specialist. I have been really concerned about who I would talk to. I need a doctor that knows about sarcoidosis and not someone who is learning and I didn’t think I was going to find this. Turns out that this doctor treats up to 10 people at any given time with sarcoidosis! Wow! This is exactly what I needed. I was willing to get on a plane and go where ever I needed to make sure I got this taken care of correctly, but it turns out I have an experienced specialist right here, only 15 minutes from my house!

After going through my history, referring doctor’s notes and a brief exam he did indeed confirm that it was sarcoidosis. We talked about the options and prognosis and it turns out that the majority of all of his patients recovery fully from sarcoidosis in about 4 to 6 months. He does have one that is having some extended problems but he believes that I am very likely to simply resolve this! =) Weee HA! This is fantastic news. He said that I would need to be on prednisone for about 4 months to do this though.

I talked to him about alternative medicine but he said that nothing else is nearly as effective as prednisone for treating sarcoidosis. I believe he is right. When I started taking the prednisone prescribed by my family doctor the results were dramatic. It took away all swelling and problems so that I could fully walk again, although I did still have a heavy chest (breathing). I had only been on a short dose until I could get in and see this doctor and it actually ran out a day ago. Since it did the pain has began returning with a vengeance. My ankles are hurting again, the pain has returned to my knees and my chest hurts. I hate the side effects but there is no question that this stuff really knocks the sarcoidosis down.

The side effects for me are very dramatic. I get AMPED up and completely wired. My heart pounds and I feel agitated, like I have enough energy to throw the bed through the wall. I haven’t had too much trouble controlling this agitation but it does take effort to not be short with people. Not that there is any mal intent, but that I am so hyped up that my answers are very short and to the point… perhaps even a bit blunt. I have to take special care not to do this and it take some amount of mental effort. It is because of these side effects that I am dreading going on prednisone for 4 months. Not to mention the weight gain problems.

Despite how much I hate the side effects of the prednisone I can’t wait to take it in the morning. My ankles are hurting, I can’t use my knees very well and it is hard to breath. I feel like someone is sitting on my chest!

Well the best approach I can see it to take it head on! Focus on how I convey information, get help from trusted people who can give me kind and honest feedback about how I am treating people, and getting in and exercise routine and have and a clear diet. My guess is that this is going to take a bunch of will power, but I really believe I can do it.

I have been taught since I was a child to fast one day per month and give the money we would have spent on food to charity. For years this seemed somewhat pointless, at least the going hungry part. Why not just donate the money and not go hungry, but the one thing you truly learn from fasting is the ability to deny yourself what it is that you really want. It is harder than it sounds, try it and you’ll see what I mean. It does help you gain self control though because the only thing standing between you and that food is your own bare will. I’m going to need that now. I know I am going to want to be short, I am going to want to eat a bunch of food, not go to bed and I am not going to want to exercise, but this is exactly opposite of what I need to do.

So the plan for now is to go on the prednisone at 40 mg per day for at least 2 weeks. I will then have another x-ray and appointment to see how the sarcoidosis is reacting to the treatment and we will adjust it accordingly. He took some additional blood tests as well and I will get the results during my next visit.

I told the doctor that I was having a really hard time sleeping because of the prednisone and asked if I could just take the 40 mg first thing in the morning. He said that it works better if it is taken at 20 mg at two different times during the day, but suggested that I take 20 mg at breakfast and 20 mg at lunch. Hopefully this will allow enough time to wind down before bed time.

I have taken some time to explain what is happening to my older kids. (I have 6 by the way) I want them to understand what is happening and especially to help them understand if my mood changes from what it normally is. I think that they are old enough to understand and help out. I really don’t want this to impact my family.

That’s it for tonight… It sounds strange but I can’t wait until morning so I can take this awesome stinking awful medicine. =) For now I am cautiously optimistic about completely getting over this sickness altogether! Boy wouldn’t that be great!

Michael