Posted by BarbaraCat on April 13, 2004, at 1:06:28
In reply to Re: Barbara here » BarbaraCat, posted by katia on April 11, 2004, at 4:22:00
Hi Katia. You'll always be Katia to me. I've always loved that name.
>> I'm actually amazed that there are cases of SJS like you who aren't that bad. I thought it was either death or hideous disfiguration. Not at all to belittle what you're going thru'. How long will it be until you're better? I hope soon.
**Well, it's such a weird thing and the med establishment is pretty befuddled by it. There's the common drug allergy reaction called 'erythema hyperforme I' where the rash, which could be really bad, just confines itself to the skin. It could be caused by many things, usually sulfa drug allergy, but also from phenobarbitals, opiods, cocaine, dilantin, are other common ones - whatever a person might be sensitive to. There are levels of it but as soon as it starts involving mucous membranes is when it crosses the line into SJS. There are levels here too and infection is always the issue with breaks in skin/membranes. The really nasty flayed ulcerated kind where infection and inflammation have totally taken over is called TENS (I don't remember the actual name). I have the lower level of SJS. I thank God it didn't affect the skin of my face but the rest of my body looks like a cross between shingles and poison oak, but not too extreme. It hit my lips and gums and throat and esophagus which is bad enough but when it started migrating into my 'privates' it really got scary. The progression has stopped now and I'm on the upswing. About the only thing that provides real relief is good old Benedryl pills. I also did a high dose (1M) of homeopathic Sulfur and I think it's the right remedy for this. It's really made me very wary of Lamictal because no one really understands this ertytheme/SJS thing very well. So many unknowns with these meds. Boosting the immune system seems the best prevention/cure. I think it will be another 2 weeks before I'm feeling back on my feed again.
You mention the sensitivity of BP's, or whatever it is we are/have. It seems like when I'm in an extreme place, whether emotional or a health crisis like this, I'm very open, my antenna is huge. I received some amazing insights during this whole crazy time since November. I have to liken it to very intense psychotherapy from my very own disembodied therapy team. A whole lot more effective than my HMO guys. If I can ever just get it together I need to write it all down and try to capture it.
>>One thing I'm realizing is I am who I am and meds can help, but I will ALWAYS have to deal w/ who I am.
***Who you are is a whole lot more real and multi-facted and sensitive than most people, Katia. Feeling such extremes of life is a rare gift. So many people try anything to just feel something or else spend their lives emotionally suppressed. I think when you hit the extremes in a mood disorder, there's no choice. It's like being an uninsulated live wire. I think we get in trouble when we feel weird and ashamed of it, frightened and don't trust ourselves or the outcome, or give into self-hatred, which is such a common thing with depression.
An off the wall question - do you ever wonder if you're ADD? I know it's a pretty common comorbitity w/Bipolar. I'm beginning to suspect that's a big problem with me and always has been. Of course, there's the other bizarre stuff too, but I can be so damn disorganized and scattered and that really makes my life chaotic and stressful. All the piles of clutter and unfinished projects which I know came about in my hypomanic states, but even when I'm 'normal' I either find it very hard to focus and just do one thing at a time or I'm hyperfocussed to the exclusion of everything else. I used to get by with this because I could multi-task pretty well especially when hypo and when I was younger and had more energetic reserves, but now my brain just feels fried. My drug of choice in my youth was amphetamines, but no way, uh-uh, can I do that shit anymore. Tried Ritalin and it made me feel just terrible. Maybe it wasn't the right med, but I don't think my wiring can handle stims any more. I guess, once again, fish oil is the best natural remedy for this.
Oh, I just long for a clean, clear Zen home and garden. I just don't wanna plough through this old debris of my life anymore, pushing piles of shit from one end of the house to the other. I want order and clarity but just can't get there. I practice mindfullness meditation when I can and it helps but not enough. Oh shit, call it whatever DSM-IV names in the book - BP, BPD, depression, OCD, whatever. It's a brain that is wired funny.
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> >And another topic/slant altogether. I was thinking: depressed/mercurial people = sensitivity/perception. Maybe it's just that most of us are really tuned in to a bigger spiritual picture, but do not know how to hold it in this crazy world so we become depressed. I know I've thought of that before, but it's holding new light for some reason. It's too coorelated. Sensitive aware creative people are often moody and depressed people. The moodiness could be a result of our awareness w/in a world that is NOT that aware and we are eaten alive and do not know how to deal w/ the insight and knowledge.....just the thought of the evening...***Oh, yes, yes, yes and Amen to that. In other cultures this would be nurtured and cultivated as the gift it truly is. We would be trained as shamans. We are already shamans in training but doing it without much support and by the seat of our pants.
There's a wonderful book I just finished; "The Natural Medicine Guide to Bipolar Disorder" by Stephanie Marohn. I highly recommend it. She talks about bipolar as being just what you described and much more, basically an electrical disturbance that has to be healed, integrated and honored from the deepest spiritual levels to the biophysical ones. It covers many modalities of healing and philosophical musings about this disorder. It's a bright and shining gift, but without guidance it can become so overwhelming and exhausting.
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> ***It's funny b/c after my brief stint w/ Li. I've been losing hair and not losing weight even tho' I've been running around crazy (and this is the time I lose weight) and eating nothing. I think it made me hypothyroid...(I know I know we've had this conversation and I just need to go and get tested)...***Lithium made my hair feel weird. In fact, it got very curly for a while and then went straight. It didn't hold color well either, kinda like it was coated with a greasy metallic film. I've heard it can make some people lose it but not permanently.
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>>I've been taking Seroquel since July for sleep as needed. But I am taking it every night now. Almost 25mg. At first it seemed to make more depressed. But now I can't tell; it's been too long and now I love it for sleep. It knocks me out and let's me sleep thru' the night. I love it.**That's one med change I may be open to and will bring up with my pdoc. I've been taking Ambien cause without it I just don't sleep. But I've heard that Seroquel works much better and has the added antipsychotic benefit. I just don't want anything that's going to pack on more pudge, which I've heard tell it can do, or cause weird tics.
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>> I did just up my Lamictal yesterday to 50mg and went into an awful wierd agitated state for the past two days...**You seem to be doing real well. I can sense a more joyful lightness and hopefullness in you. Just wondering why you're feeling the need to up the Lam if you're doing OK? You know, if it ain't broke...
> Katia (wink wink)
**I'll never tell...
poster:BarbaraCat
thread:288885
URL: http://www.dr-bob.org/babble/subs/20040409/msgs/335807.html