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 bronwyn
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This site is here to keep you updated on me and things medical-- In particular, my dealings with Chiari I malformation, pseudotumor cerebri, and pretty much every shunt configuration imaginable. Now there's Lupus, Sjogren's, mysterious neuropathy and muscle atrophy... the list goes on.
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  THURSDAY, SEPTEMBER 11, 2008 06:20 PM, CDT
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The following is just a tired, frustrated rant, no real news.

Steroids are evil... But what, oh what oh what to do without them???!

I think that steroids bring about the equivalent of rapid-cycling manic depression in me over the short term. Considering this, I think they should come with a co-prescription for time allotted to scream at the top of my lungs in a sound-proofed room. Maybe add some padded walls and punching bags, too.

Got back from the veterinarian's office a while ago, and I am still feeling all shaky/winded/exhausted just from that little excursion... which did not go badly, all things considered, but I still feel like screaming ARRREHRGRHGRHGGGH!

I won't bother with all the stupid details. I am SO wiped out tho.. I was up very late and incredibly stressed last night b/c of the cat being sick.... it was a realllly, really horrible night, and today I just couldn't face doing anything but the bare minimum and making the unavoidable, imperative trip to the vet for my poor sick kitty. :( At least the vet was nice, she didn't charge as much as I thought she would, and also said that the follow-up visit next week will be free! YAY for that pleasant surprise!

The steroids are making me hungry, too.. like.. ridiculously so. *sigh* I should NOT be eating any more, but I am hungry. And this is a really petty complaint, but I am THIRSTY and want to be able to just drink a glass of water! My swallowing issues are making it ridiculous, I can't just guzzle down some ice water like I want to.. it comes back up again and again, and often I have to spit out like 3/4 of what I try to drink.. To just have a glass of water sounds so nice.

The steroid mood swings are to a great degree worsened by my hormonal state, too, in my opinion. I have the hormones and symptoms of a peri-menopausal or menopausal woman... Plus some others that are just weird. I really need hormone replacement therapy, but finding a doctor who will touch my case with a ten foot pole?? HA! No such luck yet. It's funny that I may end up full circle after all these years, looking in Alaska for the care I can't get 'Outside'.. I am looking in AK at some of the alternative care providers that flourish better there than in many other states, for a variety of reasons. (from the fact that naturopathy is recognized by law there, which is not the case in all states, to the fact that there is a whole sub-population of people whom some jokingly refer to as 'granola' types in AK- and the granolas bring their values and lifestyle with them.)
If all else fails, I know enough about wildcrafting to (hopefully!) at least take the edge off some of the more bothersome symptoms myself... I've always been interested in botanical hormone analogues, particularly phytoestrogens.. The analogues are basically just compounds that are found naturally and have such a similar structure and makeup to *other* compounds that they will act on the same receptors and/or have similar effects/uses... For instance, soy products contain high levels of compounds that I referred to above, phytoestrogens- big word for compounds in the plant that will bind to human estrogen receptors. So if I can't get it from my body or a pill, there are ways.. it may be difficult, but there are ways. I don't intend to blindly start chewing up roots and pickling my liver or anything, tho, so don't worry about that just now.
Someone has to take charge and catch all the things that keep falling through the cracks with me, tho, and it is looking more and more like the person has to be (more than it already is) ME. I have to take the wheel, because if I don't then nobody will.

The medical community fails people every second of every day, I don't know why I would expect anything different when it comes to these hormone issues.

Sorry to whine so much in this... I know I have so much to be thankful for... if even just one person reads this dumb entry, I am blessed beyond measure and I should be beyond complaint, because each such person is a friend to be cherished.

Hugs to all of you.
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HOSPITAL INFORMATION
University of Chicago Hospitals
Chicago, IL
United States