slowly but surely

I am feeling better. I even went for a run today. It was difficult, especially because I had stopped working out for a while when I knew I was headed for a flare-up. The problem is - I try to ward off a flare-up by not working out, but then I use that time to just continue working - not realizing that my strategy only works if I do something better than working out - such as rest. You can see how easy it is to fall into that cycle. It's hard to remember that just because I'm not working out - doesn't mean I'm not wearing myself out.
My eyes are feeling better, but I'm still keeping my eye on them, in a manner of speaking, because an inflammation in the eye(s) is the one thing I am never sure whether I have, and it's one thing I feel I can't self-monitor. I don't mess around with that since it can lead to blindness, and my eyesight is already less than perfect (probably as a result of the multiple flare ups).
I still feel very tired, though, and I have promised that I will take a sick day this week, regardless of the fact that I still have a lot of work to do.

16 hours of sleep

goes a long way. Saturday night I slept 12 hours, then got up for about an hour or two and went back to sleep for another four hours. This made going to bed at a decent time on Sunday night a little difficult, but I managed to get almost 7.5 hours last night. I'm a new person. Well, the sleep and a very small dose of prednisone to jump start me. I hate being on prednisone, and I've been very lucky to be off it for years now. I take it only when my flare-ups are accompanied by fevers - usually a sign that my white cell count is very (perhaps dangerously) low. Even then I take 1 or two very small doses and make sure I get the (even more) necessary sleep. A note on low white cell count - a few years ago, I was having a flare-up with fevers, and I could tell it was a pretty bad one. I went to the doctor and it turned out my white cell count was below 1. This meant that my doctor was mandated to hospitalize me. I assured her that I just needed rest, but she told me that if I didn't check myself in - she'd send an ambulance for me. I checked myself in, and after a few days of near constant sleep (no drugs), my cell count shot up. The doctors had no idea what was going on or why I got better. I kept telling them that it was just a flare up and I needed some sleep. They did not believe me, but didn't have a better explanation - even after countless tests. So, I learned that getting rest early on key. Also, as great as some doctors are, they can't possibly tell me how sarcoid affected me nearly as well as I could tell them and myself. You have to learn to pay attention to yourself and your symptoms so you can notice a pattern.
Now is the tricky time, though. I feel so much better than when I was dragging on Friday and Sat, that already I am wanting to go for a run or something. I know better. I can't overdo it too soon. I can tell that I still need some additional sleep. I did lift weights last night - which I'm sure helped. Lifting weights is good because it's beneficial without the impact and stress. I am not even close to being a body builder or even noticeably toned, but I can't tell it's beneficial in many ways. I only wish I had been introduced to it earlier - apparently being on prednisone for a sustained period of time weakens your bone density, and lifting weights help build bone density.

Pity party

I am throwing myself a pity party today. I have been working very hard lately, and I think as a result, my sarcoid is acting up. I suspect my eyes have inflammation, I'm tired and I know I have what I call "pink spots" which is really erythemanodosum. The are painful bumps that pop up on various parts of your body. Mine generally start on my legs and I can gage how bad my flare-up is by where they travel next. That's the upshot of living with this auto immune deficiency for 25+ years. I have learned to see patterns and to be able to gauge when, and what type, of intervention is needed. Mostly, I just need to take better care of myself. Sometime, though, you just can't always get the amount of sleep you need to do that (for me - over 8 hours a night is ideal). Life just gets in the way. If it's not work (which is the reason for me this time), it's just stuff you want to do - like travel or become a runner or whatever. Who wants to sleep that much when there are so many things in life to do and experience? Balance is definitely the often elusive goal.
My doctors tell me I have a high pain threshold. I might. Really I just have an intense desire for this not to get in the way of my life. Some people would call that denial. I call it - determined not to be a "victim." Whatever it is, sometimes it comes back to bite me - like now.
I picked my current profession because it was intellectually stimulating. On the surface it doesn't require long hours, so for the most part it's not physically taxing. I figured this would be the best way to keep my sarcoid in check. Mostly I'm right - I've even been able to start running - something I never thought I'd be able to do because it is too hard on my body. Lately, I've had a surprising amount of work, though, and the stress has taken its toll. This brings me to the reason for my pity party. If I can't get stressed out at work without my body falling apart - what CAN I do? Am I destined to be too delicate to even sit at a desk? What's going to happen if/when I have kids? I don't know. No one knows. It's terrifying to think I might pass this on or that I might become too sick to take care of them.
Before I decided to start this blog - I did a quick search to see of there are others out there. What I found was a huge reminder that, as I said, I am one of the lucky ones. My symptoms (so far) have not included my lungs or brain. As yet, I'm not in any danger of dying from this. I really have no right to this pity party, but there it is, for what it's worth.