Brad Baker

 

Hi Tom and others, I have read some of your histories etc now andwill read the rest as they come to me. I actually do use the computer quit a bit. I am a physics teacher and researcher. Thec omputer is on my desk. I use it more than I would like and that is why I don't use it much for newsgroups, email, www, etc. Email is really great however and for this I will try to find the time tokeep somewhat in touch. I feel for you when I read your histories as I have felt it myself. And I see similarities etc. If we weret ogether you would probably have trouble shutting me up as the whole experience has taught me so much and is so complex and interesting,not to mention important. I am a poor and slow writer however, so will not be able to say most of what I'd like to.

AOSD hit me like a ton of bricks (similar to Derek's onset). There is a positive side to most things, it just doesn't out way the negative side. For example few people really know the awesome power of our own immune systems, but we do. Before the correct diagnosis prednisone was prescribed but I wouldn't take it. Even when the diagnosis was found I refused to take it until one night (after weeks of having it) it really overwhelmed me with the incredible pain (the fevers i hardly noticed even though they were high) (I was so weak and thin that I couldn't see my own condition from a realistic perspective. in retrospect I had been acting quite insanely). That was the night before my appointment with a rhuematologist when I was going to demand some answers to my questions. Like what are the various prognosis and their probabilities if I do take prednisone and if I don't. What are other alternatives. I was too weak to fight after that last night, I succumbed, part of me died I thought, and I took the prescription, filled it, and took the lower of the doses recommended by different doctors (50mg). Euphoria did follow, temporarily. But more importantly it did save my life.I still thought of the stuff (pred) as some devils brew and wanted off it as soon as possible. It took some months at least but I did. According to the studies I am in the approximate 1/3 of cases that remiss and never return. But that is because studies are rigidly full of definitions (as perhaps they must be).

 I have had many relapses but thank heavens none with the full blown syndrome.Without the high white blood counts and sed rate and ... , you do not clinically have Still's, but you and I know when we have it, clinically or not. I have had numerous relapses, again, mild compared to the first, and fortunately less frequent in time. Still it has been amazing how weak and damaged I can be left by a barely noticeable episode. It is what I have learned from these episodes and from my condition before and after the main episode that you all may find most interesting and perhaps useful.Oops I started this a while ago and got busy and never finished. I will try to wrap up quickly so that I can send it off. 

Studies have shown that viruses can trigger our overblown immune responses. I am sure that environmental antigens can as well. Manmade or natural. After many years now it is clear to me that I am in greater danger this time of year when allergies are rampant (infact it was always that way for my joints etc even before I had official AOSD). But a more important factor for me is my mental state/attitude. I have plenty of stress, but it is not the stress as much as my attitude towards the stress that is critical. Confidence is great (if its real) whereas believing you'll never make it... is what will set off an episode quite readily (for me).I am on a strict vegan diet, except fish, and take some dietary supplements. As a result when I am not having an episode/relapse I am better off than I was before the first attack. I would like to go on and on about this but simply can't (deadlines ...). I look forward to further communications, in time.

Best wishes to you all Brad

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