Good day!

Today I had a great day. The program is going well. Hardly any pain, side effects not bad and under control (so far), and things are getting back to normal.

I added this blog to the Google search engine. Hopefully people who have been diagnosed with sarcoidosis and are looking for information on how this has played out in other people’s lives can find this useful.

Michael

Prednisone the magic drug

Wow! This morning I staggered out of bed, miserable and in pain. I stuffed some dry cereal down my throat so I won’t take the medicine on an empty stomach and then took the prednisone. I also took two IB’s and went back to bed. When I woke up at 11:00 AM I was a different man! Someone came by when I was sleeping and kicked the CRAP out of the pain man! He stopped sitting on my chest, pulled the drill bit out of my ankle, stopped punching me, packed up and left! It was amazing!

Taking this is the morning and around 2:00 PM really helped with the side effects. Although I felt a bit wired it seemed less apparent, probably because I was focused on lots of other things instead of sleeping.

Today I was very active! I put in a new faucet with a RO for clean water. It was quite the effort and I didn’t hurt at all! At the end of the day I was really surprised so I rotated my ankle to see how it was doing. It still hurt a bit when I did that but other than that, it was great! This prednisone really is amazing!

I did great eating today, even with then increased hunger that seems to hit at night because of the medicine. I eat all I wanted but made sure it was low fat and good for me. No fat popcorn, rice and fat free soup, oatmeal and cereal, etc.

Feeling good. I’m hopeful that if I can keep this kind of thing going the next 4 months are going to go very well! Here’s hoping!

Michael

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

Back to work

Well I went back to work and I appear to be doing well. A lot of things are changing at work right now as I am in the middle of transitioning from one set of responsibilities to another. This is always a challenge as the old responsibilities linger and it takes time to come up to speed and be truly effective in the new ones. I love a challenge though and it really gives me something to focus on along with my family.

The prednisone is really helping despite the side effects. The prednisone wires me up like crazy. I have to really take note and adjust how I react and talk with people to make sure that I’m not blunt, abrupt, uncaring or short. I don’t intend to be like that but how the prednisone makes me feel causes me to act in this way. I have asked my wife to help me watch this and she has given me some insightful feedback. I believe that honest feedback is the key to changing, and you never can see yourself through your own eyes very well.

The prednisone runs out today. It will be interesting to see what will happen now. Will the swelling return? Am I going to need to stay on the medicine to just to maintain the ability to walk or will I only need to use it during flair-ups?

I am able to walk normally without hardly any pain, although I can tell things aren’t quite right yet. I have noticed in the recent past little lumps just under my skin around my joints in my wrists and ankles. Tonight I found one of them on my ankle and had my wife feel it. I’m not sure what these are but I think that they are the clumps of white blood cells the web sites are talking about. I can see if these were growing in my organs how it could cause problems. I have been short of breath tonight, like I am breathing through a dust mask. It also feels like there is a weight on my chest that I have to lift with each breath. If the prednisone is working in my lungs the same way it is in my ankles I wouldn’t expect this. I have a meeting on Friday morning with the specialist and hope to get a bunch of answers from them.

My ER doctor called me today while on a trip to Washington DC. She is really an amazing doctor. Not only was she very knowledgeable and skilled (She nailed the prognosis in only 3 hours in the middle of the night, complete with blood work, x-rays, etc) but she is also very concerned for me personally. When have you ever gone to the ER and had that doctor take a personal interest in you? Her follow-up and concern were so genuine it really surprised me. I only wish she had a family practice, I would join in it in a heartbeat! When I asked her about it she said that she only worked at the ER part time because she wanted to focus on her family and being a Mom. I tell you, I am really impressed. There are some really good people in this world.

I didn’t get a copy of some of the blood work she took because it didn’t come back the same night. She mentioned that it came back positive with some results and wanted to make sure that I had this information for the specialist. I don’t know what this means yet, but will need to pick it up and take it with me.

A lot of people have been keeping me in their prayers and it really gives me strength. It means a great deal to me.

Michael

Funny moments and some improvements

On Friday, when my ankles felt full of sand, razor knives and rubbing alcohol (or so it felt), my wife and I needed some things from Costco and since it was right next to the hospital we stopped in. It was quite a sight! My wife can’t lift anything heavy or turn her nick since she is still recovering from her surgery, and although I can lift things I can’t walk. I hobbled into one of those old people carts, you know the battery powered ones and she got an empty cart and off we went. At one point her cart got too heavy for her to push but I couldn’t get up to help her and my “cart” wasn’t large enough. So she walked behind the cart holding on to the rail, helping me steer, while I reached backed and pulled her cart from my little battery powered cart. I think it ended up looking like some silly little train. The little train that could, but perhaps really shouldn’t.

I think the worst part for me was when an old lady, and I mean really old, came strolling by me with her cart of stuff and look at me with that “Oh, you poor man” look in her eyes! Arg! She was actually having to maneuver around me because I was slow and in the way! Ha Ha! Oh well, makes for a good laugh.

The amazing thing was how I just watched everyone walking around, talking on their cell phones or chatting with each other and they were all so totally oblivious to their walking! They didn’t even think about the fact that they could walk, and that it didn’t hurt. They weren’t even aware that they had ankles! I never thought that I would think like this, but I wonder how many other people do.

Today the prednisone really has been kicking in. The swelling and redness have really gone down and I can walk normally, especially this evening! The Ibuprofen really helps too! I am almost blissfully unaware of my ankles again! =)

I even went to church today, although I got a lot of funny looks when I kicked off my shoes and put my “normal” looking feet up for no apparent reason. I must have looked really funny, like I was in my front room watching a game.

I am considering going to work tomorrow instead of working from home. I am a bit worried though because if I am almost better and then walk on my feet all day it may cause it to flair back up and then make me miss more work. I think it might be the most prudent thing to take another day and make sure I don’t make it worse again. I am also hoping to get more information from a specialist tomorrow about the prednisone. I am on a short dosage and will be running out in three days. I want to make sure that I don’t run out and the pain and swelling comes back again. I’ll have to see.

For anyone who might be going through this as well, I have been on the following dosage:

60 mg for 3 days
40 mg for 2 days
20 mg for 3 days

I star my 20 mg bit tomorrow.

The one strange thing that I have noticed is that it makes my chest feel really funny. My heart rate seems to have gone up too. Or rather my heart seems to beat harder. Have to look into that. Perhaps it is a side effect of the medicine, or perhaps it is just my wife. =)

Here is a picture of us:



Well let’s see what tomorrow bring.

Michael

Diagnosed With Sarcoidosis

Hello all,

Yesterday I was diagnosed with sarcoidosis (sar"koi-do'sis). What the crap is sarcoidosis? Yup, that’s what I said!

Simply put sarcoidosis is inflammation that produces tiny lumps of cells in your body and organs which look like tiny grains of sand. These tiny clumps can stick together and make bigger clumps. When many of these clumps grow together they can cause problems with how your body works. This is especially true in joints and organs. Also the inflammation, although not large, is very painful.



Sarcoidosis can grow anywhere, but are typically found in the lungs. It can also affect your skin, eyes , liver, spleen, brain, nerves, heart, bones, joints, etc. So far for me it has affected my ankles to the point where I can’t walk without burning pain and my knees with mild pain. It also shows up very clearly on a chest x-ray. Nothing else has showed up for me yet, and I am really hopeful that nothing will happen to my eyes.

Sarcoidosis for many people can be mild. The inflammation may get better on its own and the clumps (sand) may stop growing or even shrink. For many people symptoms can go away in a few years. I am really hoping this is the case with me.

For others flare-ups come and go for a very long time, and for yet others it may slowly get worse over the years and cause permanent organ damage because of scaring.

The fortunate thing is that sarcoidosis is not cancer, it is not contagious , although it is linked to genetics. My father had what sounds like stage 2 sarcoidosis. I am hoping that none of my six kids will have to deal with this. I have two boys that are deaf and have cochlear implants. I certainly hope that of anyone they don’t have to deal with this, especially since this can cause eye damage!

One of the best sights I have found that explain everything about sarcoidosis simply and without too many medical terms is the National Heart Lung and Blood Institute found here. This site has really helped.

So now that I know what I have now what?

The biggest thing is that this has explained a lot of things that have been happening to me over the last while. Especially the pain in my feet and knees and why I have been so exhausted in the mornings. (Another side effect) In some ways it is good to know that this is caused by an illness because at least then I can understand what is going on and treat / deal with it better.

Next steps for me are to get to a specialist and see more fully where I stand and how much this is going to impact me and my family. I also need to do some more research on the internet and perhaps talk with others who have had experience in this. I have started some medicine that will make you gain weight so I will need to exercise my upper body or do whatever I can to stay fit. And most importantly I need to see how to adapt so as to not negatively impact my wife, my kids, my work and my life.

So far I have had tremendous support from everyone. Family, friends, co-workers and my boss have all been very helpful. My bishop even insisted on going to the hospital with me since my wife is down and unable to come due to recovering from neck surgery.

With this kind of support, the medical help I can get and my determination to take this head on, I think that the future holds promise!

Michael