Wednesday, December 29, 2010

Amazing! Better than ever!

Amazing! I am doing better than ever! The redness and swelling has completely gone away. My legs are the same as when I was twenty five and I haven’t used the compression socks for months! I was feeling it in my lungs quite a bit, but even that has gotten much better. (Still there a bit but doing great!) I feel very blessed and grateful.

This holiday season has been one of the most... meaningful of my life.

Nothing to do now but keep going, eat good (especially after the holidays), exercise and enjoy this reprieve that I have been experiencing. Here’s hoping for the future.


Ps. My sister, who also has Sarcoidosis is doing much better as well. She has lost a ton of weight and is down to 5 milligrams of Prednisone and looking to go to 2! She has had Sarcoid longer than me but most of that time was untreated. She has taken a slightly different treatment path, primarily just Prednisone, but it has worked for her. Just goes to show that different people react differently to different treatments, the key is to just never give up!

Good luck sis!

Tuesday, November 9, 2010

Sometimes you have to go down to go up

Well… the effects of the Imuran finally ran out, and while I was on a business trip too. My leg began swelling and getting really stiff. The red lumps (for lack of a better term) began migrating toward my ankle. I was very concerned that the inflammation would again impact my joint and I would lose the ability to walk freely. If this were to happen I would have to go on a high dose of Prednisone with all of the strong side effects. The timing for this couldn’t be worse. Things are changing at work and I am applying for a position. I certainly couldn’t afford to be dealing with “Prednisone Rage” during this process.

I went and saw the doctor when I get back from the trip and explained the situation. He talked over the situation with me and then switched out my 5 mgs Prednisone with 4 mgs Methylprednisolone. He gave me a shot for a boost to get the swelling under control and told me to get some compression socks.

It has been two weeks since the change and I am in better condition now than I have ever been since the Sarcoid started! The medication appears to be working very well, and the compression socks appear to be doing the trick. I have been eating better and have lost about 15 lbs and feel really good. I have to wait and see if the shot is still in my system, but I don’t think so. If this keeps up I might even be able to kick this thing before too long. Needless to say I am very excited.

Here’s looking to the future.

Tuesday, October 12, 2010

Holding on and a leap of faith

I have gone off of the primary medication (for personal reasons I’ll explain later) and have been waiting to see if my symptoms come back. It is too early to come off as quickly as I have and so I am expecting some side effects. So far I haven’t really noticed anything, but that last few day I have begun to have some serious pains in my left foot. It has been very debilitating at times, reminding me of my ankles when I first was diagnosed. I have also been sick with the… well runs on and off for over two weeks now. I know that my sarcoid kicks up when I am sick. (This only makes sense since it is an autoimmune disease.) I am hoping that it is only because of this and will go away when I am feeling better.

I’ve already seen a doctor about my drawn out stomach issues, but he seems to think it is a virus and will pass. If it is, this is the longest I have had something like this. I have a prescription to have an additional test done at the hospital should it not clear up. For now…. I think I’ll wait it out.

Today I wasn’t hurting and so I went on a mile and ¾ walk with my wife. No pain! I don’t know yet if I am just lucky today or if it was temporary. All I can do is just wait and see. It was good tonight though!

I talked to a guy at my work today… get this. He had sarcoid 10 years ago! For a rare disease I sure know a lot of people who have had this, or do have it My dad, my sister, a person at my church and a person at my work. Hummm… I guess we are not so alone as some may think ah?

Things are still looking positive though. I’ll keep you posted.

Tuesday, October 5, 2010

Things have been going very well. I have progressed all summer and am feeling only minimal symptoms. I have on large area on the shin of my left leg that at times gets hot, red and sore. At other times it is cool to the touch but hard as bone. I have the same thing on my right leg but to a much lesser extent. The medications and I believe physical activity has really worked well.

I have been very active this summer, many walks with my wife and the family and even walked home from work today. (About 3 miles) I've also lost twenty pounds over the summer and my prednisone face has mostly gone away. (sigh in relief) Just a short while agao I went on an eight hour ATV ride through the mountains while the leaves are changing. I felt great and the ride was Amazing! All in all I have really been blessed.

I have recently gone off of the Imuran and the Sarcoid hasn’t gotten any worse. I am now only on Prednisone, Plaqunel and Nabumetone (1500 mgs per night). =) I will have to wait and see how the winter goes, but I am very hopeful. Things appear to be really looking up.

Keep fighting! It's worth it!

Sunday, May 23, 2010

The strength continues!

I am continuing to do better, even missing my medication one night didn’t impact me like it has in the past. I am excited at the progress and hope that I can sustain this. I am really looking forward to gaining my strength back, I really miss it.

The other day I took an opportunity to run full out, as hard as I could and it felt GREAT! The blood pumping through my muscles, the burn of energy rushing through my body felt amazing. My lungs are still affected by the Sarcoidosis so it was hard to breath. Actually it took some time to regain my breath, and my legs were rubber afterwards for not having done this for so long, but it was awesome! I loved it and want more of it!

My wife has become very excited to begin some new diets on her own and the timing couldn’t be better. A better diet, starting more regular exercise… the road ahead looks promising. =)


Wednesday, May 19, 2010

Doing Good!

Great news! I am continuing to make steady progress. I have noticed a marked improvement in the redness in my leg and it has actually begun diminishing. I had some red spots (the sarcoid) next to my left eye, and I noticed tonight that it has mostly gone. It appears that a combination of the medicine, more activity and perhaps even better weather is helping. I am very excited.

I am constantly amazed at how much strength I have lost. It is a little hard to explain because it isn’t strength per say…. I still am very strong. I’m able to lift heavy things and do the physical things I always have, it is just that I really hurt after doing them. I have the strength but get worn out quickly. I am hopeful that this is something that can be resolved with exercise and building stamina.

I think one of the biggest battles for me has been fighting the shear fatigue of the mornings. Many times in the past I have awoken to my alarm clock and the thought of getting up is staggering. Some days I just didn’t believe I had the strength to do it. I have to admit that in those times I turned to prayer and held on to my determination to never give up. As I decided to fight and as I began the day I felt an amazing amount of strength and I have been able to meet the demands of each day one day at a time. God has truly been with me and helped me, especially when the times have been hardest. And over all I have been able to do all of the important things.

It is amazing to me that sometimes the things that make you struggle the most give you the most sense of accomplishment once you have come through them and gratitude for the help that is given along the way.

I don’t believe that this is over yet, but I find myself very grateful for the progress I have made and have strong hope and confidence in things to come.



Saturday, May 1, 2010

Things Are Looking Up!

Things are going good. I am holding at 5 mgs of Prednisone and my health is holding. I have been doing more physical activities since it is getting warmer and my body appears to be holding up very well as long as I don’t overdo it.

I have a red spot that slowly (about six months) is moving up my right leg. It started in my toes and then progressed to my ankle and now is in my shin. I have no idea what it is but appears to be some kind of inflammation. The Dr. thought that it was gout and treated me for that, but the gout medicine didn’t do anything. He now thinks that it is some kind of inflammation so he had me switch my Prednisone from 2.5 mgs in the morning and 2.5 mgs in the evening to all in the morning. (5 mgs) I have been taking Meloxicam 15 mgs since April 30th which is a nonsteroidal anti-inflammatory drug. To be honest it really hasn’t helped. The thing that really appears to help is lots of physical activity! I helped my sister move and when I got home I thought for sure my leg was going to be terribly swollen and red, but instead it looked almost as good as when I first wake up in the morning! Surprise! Apparently physical exercise helps whatever it is. What makes it worse is sitting down all day and not moving around. I can’t wait to see what more consistent exercise can do.

I don’t know if it is just the drug change or the more activity, but I am starting to feel joint pain, especially in my toe joints, knees and sometimes my hands. It could be because of the constantly changing weather, or perhaps because I am taking the Prednisone all at once. I’m not sure. I think I am going to call my Dr. soon and let him know I want to go off the Meloxicam and go back to taking the Prednisone twice a day. That really seemed to work the best for me.

I think that overall things are looking very positive! =)

Sunday, March 14, 2010

Really loosing it, Then finding it again!

The Sarcoidosis really flared up since my last post. I was so frustrated! My expectations were that I would be almost completely under control within a year. I had reached 5 mgs of Prednisone which is manageable and was really hoping to get back to my normal physical life… and drop all this extra Prednisone related body fat, but that wasn’t to be. My body wasn’t quite as ready as my hopes were. Since I went so long, trying to hold out, I ended up having to go back up to 30 mgs! I was so angry! The prednisone mental noise is very intense and increases with every milligram, so to go back up to 30 after being at 5 was a real hear breaker!

We ended up increasing the Imuran after I talked through my fears of cancer with the doctor. His comment was that only 2% of Imuran patients get cancer, where 100% of Prednisone patients experience very strong side effects, and some that can last with you for your life time. His biggest concern was to get me of the Prednisone, or at least down to 5 mgs per day as soon as we reasonably could. When I heard that the cancer risk was only 2% my fears were greatly reduced. I am now on 200 mgs of Imuran per day and it has really seemed to help.

It is now four months later and I am all the way back down to 5 mgs of Prednisone and holding it very well! This is the best I have felt since I started this journey. I don’t know if I will end up being that 2% that get cancer (in which case this totally wasn’t worth it) but if I had it to do all over again I would have started with the Imuran, and NEVER have taken the Methotrexate! I hate that stuff!

So for now… I’m doing fairly well and am looking and taking up some more serious exercise. My lungs are hurting a little the last few days, which I don’t usually feel. I believe it has to do with my having strep and having some warts burned off. These both trigger the immune system and I am guessing that it is causing the Sarcoid to bug me, although I have been watching my ankles (where I usually see the problem most) and they have been fine. The only other side effect that I have been noticing is that I am getting tiny red sores, not unlike pimples, running from the sides of my nose down to the corners of my cheek. (Strange) I have also noticed them at the outside corner of my left eye. Nothing too big, just something to watch at this point.

Things are really going well again! Better than ever! Here is hoping!