Sudden & Painful Leg & Foot Craps

Holy moley it has gotten bad lately. Especially at night or first thing in the morning. I have been doing a little surfing on the internet to see if any of the drugs I am taking have this side effect, and as far as I can tell they really don't.

They come on extremely fast and hurt like crazy. The only thing that I can see that appears to help is keeping my legs and feet warm, but this doesn't stop them all together. I just now shot out of bed in pain from my calf constricting as tight as a solid stone and it took me about a minute to get it under control. The whole while it hurt like someone is stabbing you with a knife. Crazy stuff.

I'm going to try stretching more and perhaps some more walking. That does seem to help a bit. One thing is for shore, this seems to bet getting more prevalent, or is happening more often. I've got to call the doc tomorrow because one of my prescriptions is running out so I'll talk to him and see what he says.

It's hard to know if the leg and foot cramps are coming from the Sarcoidosis, the medicine, the overweight effects of the Prednisone, disturbed sleep, eating habits, early warnings of diabetes, or just some other strange thing. I've got to see if I can pin it down though because it does seem to be progressing.

On the lighter side, my wife is teasing me that perhaps I'm not suffering from Sarcoidosis, but male onset PMS! What with cramps, weight gain, water retention, mood swings, etc. He He! =) Well, if that's the case, let's just hope I don't get pregnant! =)

More info on leg cramps:
Mayo Clinic

Doc's, Up's & Down's and Up's Again

It has been a rough go the past while as you can tell by the lack of postings. So here's a quick update...


Doc's...

I went in for my breathing test that the pulmonologist ordered and they hooked me up in the really fancy breathing booth. They ran me through a bunch of acrobatic breathing stunts of holding my breath, gasping for air and then breathing it out so hard that your ears wanted to pop off . Then when all was said and done the results were.... “Normal, with some small congestion”. What? Isn't that what I told them? Ha Ha... well at least we have a really cool machine that can confirm what I was saying.

When the results went back to the pulmonologist he read the results and immediately ordered.... yup.... a biopsy! To which I immediately fired him. It was really funny talking to the front desk. They called me to tell me if I didn't go get the biopsy that the doctor wouldn't see me anymore. I kind of chuckled and said, “okay”. She pulled up my schedule and said I'm canceling your appointment on... uh... on.... You don't have any future appointments”. “Exactly!” I talked to several people who had seen this doctor and all of them had lots of trouble. Boy it's all about getting the right doctor. I talked to my primary doctor and we are looking for another pulmonologist.


Up's & Down's....

In the meantime my breathing really improved. Actually it improved to the point that my doctor decided that we should try and lower the Prednisone down to 30 mg. I was EXTREAMLY excited about this since the medicine is messing with me so badly. As soon as I lowered the does though I immediately began having pain and swelling return to my ankles. I decided to wait it out a few days figuring that my body would need a little time to adjust, but when it became apparent that it was only getting worse I begrudging call the doctor and reported the bad news. He had me go back to 40 mg and schedule an appointment for me.

I was really disappointed at this. I was hoping that I was making progress and having to go back to 40 mg really made me wonder if I was making any progress. The Prednisone is messing with my weight really bad. I had lost 45 Lbs since the beginning of the year, which I have gained about 30 of that back. It is very frustrating, and it redistributes the weight around your face, neck and back in non-flattering ways. Just what you need when you are feeling depressed ah? Needless to say I began wondering how long I was going to have to deal with this, or if I was ever going to make any progress.


Up's Again!

When I saw my doctor he proscribed some additional medicine. I was very concerned about taking even more medicine. The Prednisone had enough side effects already and I was worried about drug interactions. Also from what the wingnut pulmonologist doctor was telling me the other medicine that was available was more risky. As it turns out though they have worked out very well and the risks are really quite moderate.

The first medicine is called Hydroxychloroquine also known as Plaquenil. This is actually an anti-malaria medicine that they used while making the Panama Canal and found that as the workers took it their arthritis got better! I haven't been able to find any noticeable side effects other then it has really helped. (Your results may vary) I am on 200 mg twice a day.

The second comes with a little more risk and side effects. It is Methotrexate, which is used for chemotherapy and autoimmune diseases. It works to stop the synthesis of DNA, RNA, thymidylates and proteins. Because of this you shouldn't try to have children while on it regardless if you are a man or a woman. The side effects really knock you down for a day or so, but you only have to take it once per week. I am also taking it in shot form which increases the absorption and reduces some of the side effects. I have a friend who was taking the pills who said when she switch to the shot it really helped, so if you are taking this drug in pill form I would recommend talking to your doctor about the shot method.

The result of taking these additional drugs has been really good. My breathing has not been a problem for some time now and the pain and swelling went away. In addition after a while of being on the new medicine and with such good results my doctor has again reduced my Prednisone to 30 mg per day. I was really worried that the same thing that happened before would happen again but so far so good! Everything appears to be going good. I am still a little worried but I am cautiously optimistic! Have to wait and see.

You can read up on Wikipedia on these two medicines if you like. The links are here:

Plaquenil
Methotrexate


So where am I today? Well the Prednisone is now down to 30 mgs and holding which is really good because it helps reduce the strong side effects. I am feeling more sensation in my ankles but not pain per say which is really good. My weight is up =( and my sleep is still messed up but that seems to have leveled out a bit, as long as I take the Prednisone at breakfast and no latter than dinner. I am very hopeful that once I lower the Prednisone even more I will be able to deal with the weight issue better. There are still good days and bad days, but my breathing is doing MUCH better. Oh, and for some reason my heartburn issue has gone away for some time now. Don’t know why, but I’m really happy about that! All in all I believe I am making progress!


Credit Where Credit Is Due

Through all of this though I have to say one of the biggest strengths has been prayer. That may sound strange or funny, but I know God is there. I know he listens. And in the darkest times when I reach out to him I have truly felt his strength. From when I need the courage to get out of bed in the morning and go to work and provide for my family when when I really can't find the desire, to the times when I am completely messed up by the drugs and their side effects and need help controlling my frustration. He is there, and he does help. What an amazing thing this is!

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

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