The Good, The Bad and The Ugly

I have been paying a ton more attention to my breathing and what impacts it. Surprisingly enough going camping, even in cold weather, doesn’t seem to have any negative impact at all! Even with the thinner air! I went camping with my family and then again as a scout master with the scouts the last two weekends as nightly temperatures dipped down into the 30’s. Amazingly I really had no problem. Even with smoke from the fire, and being at 8,000 Feet! I was really pleasantly surprised. Actually the cool air seemed to help. I don’t know if there are any medical benefits of this… e.g. if it really “Helped” anything, but it didn’t seem to make anything worse.

On the flip side it seems that talking vigorously for long periods of time, or breathing hard due to physical exertion such as walking variously tends to inflame my breathing problem. However this hasn’t proven to be too much of a problem, as long as I pace myself and take things easy. Strangely enough I have found that any time I walk around Wal-mart, any Wal-mart, I find it hard to breathe before I get half way into the store. I have no idea why this is, but at least for me it is very apparent. I don’t know if it is perhaps some of the dust in the air, maybe some of the chemicals from the plastics they use or something. I have no idea, but Wal-mart get’s me every time! Go figure that one out.

The other thing that has really stood out is the consistent and extremely vivid bad dreams / nightmares which I believe are being cased as a prednisone side effect. Many times I wake up at 5:00 AM or so with the most insanely vivid dreams. I have occasionally had dreams in the past (before the prednisone) that were much worse than this. None of the recent dreams are terrible, but they are all very, and I mean very vivid and all have some calamity, disaster or crazy thing happening. If this gets to be much more of an issue for me I think I will adjust my sleep schedule to get up a bit earlier and see if that does anything.

Other than that, things are going fairly well. Just keeping up the fight and hoping to see more improvements in my next set of x-rays. I really want to get off of the prednisone as soon as I can.

Michael

Second Hand Specialist

Breathing has continued to be a challenge for me. When my ankles were swollen and I walked on them it made the swelling worse. I have found the same thing to be true with my lungs. As I use them, like walking briskly or talking a lot, they seem to get worse and I find it hard to breathe. Sometimes it last for up to 2 days before it calms back down, the whole time I can’t get enough air. I feel like my lungs are full of cotton balls or like I am trying to breathe through a dust mask!

Today I meet with the Pulmonologist to talk about my challenges breathing. This is the specialist my primary specialist sent me to for a lung capacity test and consultation. I had hoped to actually do these tests right in that appointment, but it turns out that I have to setup another appointment with the hospital for the lung test and a cat scan. I hope to get this done shortly.

The crazy thing for me is having to deal with these doctors. You can never just assume that you have a good one and that they will do what you need. This doctor was a little upset that he wasn’t the primary specialist. His approach was not only different but I wasn’t okay with some of the things he suggested. For example he kept saying that he really wanted me to get a biopsy so that we could be certain that it was sarcoidosis. I asked him if he had any question in his mind that it might be something other than sarcoidosis. He said that he was almost certain that it was sarcoidosis given my classic symptoms and my family history and that he would be very surprised if it were anything else.

“So”, I said “that being the case why would I get a biopsy?”

He told me that he would not feel comfortable putting me on any of the alternative medication, especially with all of their associated high risks and side effects unless he was certain that it was sarcoidosis.

Uhh…. Hummm…. Put me on alternative medicine?

I asked him if he thought that the prednisone wasn’t working very well and if he thought that we should consider using these alternative medications. He told me that to the contrary he thought that the prednisone was working well and was encourage that it had made as much of a difference as it had in such a short time. In my mind this clearly gave no logical reason for me to get a biopsy. I clearly have sarcoidosis, the prednisone is working…. So why on earth have a surgical operation that is unnecessary? His answer was because he wanted it.

This is what I am talking about. I find that you just can’t take a doctors word for things. They should be able to explain to you their reasoning and I should be able to understand and agree with it. If not than then I’m not going to do it, and perhaps I don’t have a good enough doctor and need to find another one. I think that might be the case with this one. I’ll have to see. Good thing he is the secondary doctor, I would not have kept him as my primary.

So far I can still see the value of getting the lung test and the cat scan. The lung test should help me see if there are any air capacity issues and the cat scan can show much more detail about my lungs then a standard x-ray can. To be honest though I don’t know that it is going to tell me much more than I know already.

My expectations are that I will simply need to watch myself and not use my lungs so hard while letting the prednisone do its work. Simple yet sound advice. After all of the scans and tests, I bet this is what comes back. Have to see if I’m right about that one.

Sleep continues to be a challenge for me which is a side effect of the prednisone. Some nights I simply don’t sleep at all. Other nights I sleep almost as well as if I was not taking the medicine. One thing is for sure, when I can’t sleep I shouldn’t even try. I have had some success in just embracing that fact that I’m awake and gotten up and worked. There is always tons of computer work to do. The challenge with that is dealing with the catch-up part and not letting it impact my life. Although I don’t feel tired I still feel the loss of concentration and jittery effects of not having slept. It takes effort to stay engaged and it is easy to zone out. Ahh sleep. Never knew I loved it so much until I didn’t get it. =)

The food battle continues. I find that the prednisone hunger hits you in three ways. Your mouth wants the taste of food much more than in the past, your stomach pumps out tons of acid which makes you feel like you need to put something in it and the mechanism that tell me that I am full doesn’t seem to work as well. Put all of that together and it makes it hard to not eat all the time. “Oh, yes another thick piece of chocolate cake with heavy thick frosting… uh… and with extra frosting!” =) Ha Ha.

What I have found to be helpful is to ask myself why I am eating every time I eat. Am I really hungry or should I take an antacid? Is it just my mouth, and if so should I just have some gum, etc. I find that if I am honest I am actually seldom truly hungry.

Well, next step is to get the two tests, and to hold the course. Both doctors agree that the prednisone is working and that the inflammation is going down, all be it slowly. This is progress and I just need to keep going in this direction.

Michael

Staying The Course & A Pulmonologist

I met with my specialist who agreed with what I was thinking on the x-rays. The official reading came back that there was minor improvements in the x-ray from the previous one, and my doctor takes that as a good sign, although he had hoped that it would have had more significant reductions. I agree. Since there is progress my doctor wants to stay the course and not change the level of medication. I see his logic and agree, although part of me would like to ramp it up in hopes to resolve this faster. I have to remind myself that “More isn’t always better”, it is the progress in the right direction that really matters. I am also not anxious to make the prednisone side effects stronger. So for now it is about staying the course.

The blood work came back really good. All of the key indicators for sarcoidosis are coming back normal! The prednisone is really addressing most of my sarcoidosis challenges short of my lungs and breathing challenges. This is a positive note!

Due to the hard time with my breathing my doctor has referred me to a pulmonologist to have additional checks done. Specifically to test and track lung capacity and breathing. It usually takes a month or two to get into these doctors, but my doctors office really worked on it and got me in on a cancelation next week.

In addition he asked me to keep track of how my breathing is over time, especially if I exercises regularly. I have exercised on and off since I got sick, but getting into a simple, easy and regular walking routine I think would be very beneficial. Not only will it help me fight off the extra fat from the prednisone but it should really help me gauge my wellbeing. Especially if I keep track about how it affected my breathing each day.

Today I was really weak and couldn’t concentrate at all at work. Fortunately my work is VERY supportive and really focuses on results instead of clocked ours. I was able to come home, sleep for a while and regain some strength and then do some additional work this evening from home. I really feel for people how have sarcoidosis and have strict physically intensive work. That would really be a challenge.

So… Keep on the medicine, get into a pulmonologist, keep track of breathing, get some exercise and stay the course. Oh, and get over this strep / cold or whatever it is.

Michael

Ps. I feel like I am getting a better handle on things. I’m not quite in the routine I want to be yet, but I’m getting there.

X-Rays To Compare

I got a chest x-ray tonight to take to the DR appt tomorrow. While there I took the chance to get copies of my old ones as well. Here they are:

This one is in 2006



This one was on the 19th of last month (9-19-08):



This one is tonight (10-6-08):


I’m no radiologist but it appears that my chest is still full of bones. =) Ha! Just kidding. Really though, I'm not a radiologist but the one tonight looks a little better than the one on the 19th. Hard to say, it still looks quite inflamed to me. Have to wait and see what the Doc says.

Michael

Can’t breathe!

Argh! I can’t breathe very well. I feel like my lungs are full of cotton balls and I’m just not getting enough air. Don’t know if this is normal or not, but it seems to be worse last night and this morning then in the past. I’m going to try and get in touch with my doc and see if this is something I should be worried about or if it is just par for the course.

Michael

Maniac!

I found something funny today. While I was looking up the side effects of prednisone I found a good description of what I feel… Rapid speech, racing thoughts, decreased need for sleep, impulsiveness, and increased interest in goal-directed activities, among other things. Turns out that these are classic symptoms of mania! =) HA! So when I’m feeling out of it, I am actually acting like a maniac! Ha Ha!

Well the antibiotics have kicked down what apparently is strep, and with that the pain in my ankles has gone away. I’ll have to keep an eye on things when I get sick because it appears to kick the symptoms of my sarcoidosis into high gear. Good info to know and watch for.

The other thing that I have found is that the combination of antibiotics, IB and prednisone seam to exaggerate the “Wired” feelings of the prednisone. I’ll have to watch this and do some more troubles shooting to see if I can even this out. It’s all about getting in the right rhythms until I can stop taking this stuff.

I was thinking today… the only reason we stay alive is because our bodies keep rebuilding themselves. I get a cut and my body re-grows. I cut my hair and it grows back… well at least in some places. =) Just the normal use of my hands rubs skin off. If it wasn’t continuously growing it would just ware off and be gone. In this same way we have to keep pushing and improving or lives or they may just ware away. It’s tempting to say “I’ll just wait until I can get off of this medicine and then I get back into the swing of things.” It’s easy to give myself this somewhat justifiable excuses, but there is another way. Like my body I can push back. I can… Not be satisfied with my weight gain, I can be tired in the morning, but refuse to sleep in, I can fight and refuse what comes natural. I really think that it is worth the fight, not that everything will work out ideal, but it will certainly turn out better than if I don’t do anything at all.

Speaking of that I have gained 10 lbs and I think it is all sitting on my face. =) The medicine does this, but I am hopeful that I can counteract this if I really focus hard on it. So I’m committed to work at it. It will be interesting to see how it turns out. Stay tuned. I would love some comments from others on this.

As far as the sleep goes I think my approach is going to be not sleeping when I just am not tired, but realizing that this will catch up with me in about three days. I’ll need to be aware of this and then actually plan for extra time to crash after work. I’ve talked with my wife on this and she is extremely supportive. (What a great woman!) We’re going to give this a shot this week and see how it goes.

The one thing that I have really been grateful for is a great sense of support not only from family and friends but from God. I know that God is aware of what is going on and is active in helping me and my family. Prayer in particular has really helped out. It has been a source of great strength for me and I really feel that I am not alone in this.

Hope all is well for everyone. Hang in there and keep pushing. =)

Michael

Support, The Right Doc & New Developments

I ran across a great community website that has lots of support for those with sarcoidosis. When I joined I almost instantly had contact with multiple people with sarcoidosis who were willing to talk openly about some of their experiences. Amazing stuff! After talking with everyone I really don’t think I have it that bad so far. Check out the site if you have a minute. It is…

http://www.inspire.com

The biggest thing I am finding is that people are being misdiagnosed like crazy and sometimes for years! In all that time it gets worse. Apparently a chest x-ray is one of the key tools for finding sarcoidosis and is often how it is found. That is how mine was found. If my ER doctor hadn’t ordered that chest x-ray they would have just treated me for swollen ankles and sent me home. Who knows how long it would have progressed before the actual correct diagnosis was discovered. That great ER doctor just happened to have had a relative who had sarcoidosis so that is why she ordered the x-ray. Wow!

My suggestion to everyone is don’t just take what your doctor says at face value! Find a speciallest who has lots of experience with Sarcoidosis. They say medicine is a “practice” not a science. I don’t buy it. Find a doctor who is done “practicing” and is now “experienced” and “curing”. It’s all about getting someone who knows what they are doing.

Also there was and interesting development today. My whole family has had strep throat and this morning I woke up with mine sore. I called in to my doctor and explained what was happening and express my concern over having the prednisone suppress my immune system. He agreed and called in antibiotics without even testing me, so I don’t know for sure if it is strep. If not it is at least a virus. I haven’t taken the antibiotics yet (I will after this blog) and I have noticed something. My ankles have begun to burn a bit like they do when the sarcoidosis starts to kick in. I have felt this twice now. The first flair-up. Then again when the first prednisone ran out (2 days before I got more) and now. I am also noticing the congestion in my chest again.

I know the sarcoidosis is my immune system in overdrive, and I am guessing that because I am sick it is kicking of my immune system to be stronger then it has been over the past week which is beginning to inflame my ankles. This would make sense to me because I think my infected tooth is what kicked off my big episode to begin with. It will be interesting to see what happens. If I am right, and if this is strep and not a virus, I should see the pain in my ankles start going away in a day or two when the antibiotics kick in. This will be interesting to see.

Hang in there everyone! Keep pushing!

Michael

The Basics… Food and Sleep

They call prednisone the devil’s miracle drug and I think I am beginning to see why. Taking it has completely removed all of the symptoms of sarcoidosis, but has replaced it with a totally different set of symptoms. It is like trading the pain and can’t breathe disease for the acid indigestion, ever hungry, mood swinging, heart pounding can’t sleep disease! I think that there are actually more side affects with the prednisone then the sarcoidosis. Hay but at least I can breathe and walk!

Last night was one of the worst. I just sat there staring into open space trying to sleep but couldn’t. I might as well be trying to sleep while going for a walk for as much good as it was doing me. So now the problem is that I just got home and could fall asleep right now, but if I do I will wake up at 11:00 PM and won’t be able to sleep. So for now I get to hold out and hope to be tired tonight.

The other side effect that really has been troublesome is strange endless hunger that if you don’t feed turn into storming acid indigestion. I must have eaten six Rolaids but they aren’t being very effective at stopping the problem. I’ll have to try Tums. When I have my next doctor’s appointment I will ask him about other medicine. Don’t want any strange interactions.

I have a dentist appointment tomorrow to check on a troublesome tooth. My dad had sarcoidosis for 10 years! During this time he had a tooth that was drilled and patched wrong so that it kept a bit of infection festering at a low level under the tooth. In the end it swelled up and the tooth came out, once it was gone his sarcoidosis went away. Although there is no real studies or anything conclusive that would link the two there is a general thought that the tooth problem kept irritating his already hyped up immune system and keep this sarcoidosis going. My sarcoidosis flared up for the first time right after I had an abscess tooth. They may not be related but I don’t want to make a 10 year mistake, especially when it is so simple to check out. So for now I am going to aggressively treat this. I’ll let you know what we find.

One thing is for sure. I have got to get into a better eating and sleeping rhythm.

Michael