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About StormBeforeCalm

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    Compulsive Snarky Geek Chick

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  1. I have been dealing with a variety of medical problems since mid-2015. At this point the doctors have ruled out every possible diagnosis, but their tests still show something serious is wrong with my central nervous system. I've been hanging in there until I see yet another doctor in five weeks who is supposed to be fantastic, but the last few days I've been feeling awful: extreme fatigue, widespread pain, shortness of breath, intermittent numbness, blurry vision, etc. I've had all these symptoms before but never all at the same time. I slept 14 hours last night and I can't work today because I can't concentrate on anything for more than two minutes. I'm frustrated to the point of smashing up the house, and I cry several times a day. At what point do I take myself to the hospital and refuse to leave until I get the right answer to WTF is going on? When do you know that you absolutely need medical help now and cannot wait any longer? Edit: I know this is not strictly an MI post. I do not know where else to post it.
  2. I'm so sorry, Duelist. I lost my father to lung cancer 11 years ago and it still hurts. It just doesn't hurt as much as it used to. The first few weeks were awful for me and gradually the pain lessened. Keep putting one foot in front of the other and in time you will feel better than you do now.
  3. Heading straight for it first thing in the morning. Hoping that my family will realize this is a Really Bad Idea before we hit the road...
  4. Thanks to all of you. I know it is very odd to want to have MS, but the alternatives are pretty dire. I spoke with my Hopkins neurologist yesterday and he says that I have a demyelinating disease and it's "likely" MS. I am having my case reviewed by an MS specialist at Hopkins and hope to hear something back in the next week or two. In the meantime, I am seeing a local neurologist on Monday to get her opinion and see if she is willing to start me on the standard starting treatment, which is high doses of corticosteroids. The purpose of this is to reduce the inflammation in my central nervous system, which should alleviate some of my symptoms. It would just help temporarily but it would buy me some time while I wait to see an MS specialist.
  5. Thanks, malachite. I got the last test results this morning and they were positive. 95% chance I have MS based on that test alone, plus I have white matter lesions in the typical MS locations. I'm incredibly relieved that it seems to be MS because the alternatives could have been a lot worse.
  6. Thanks to both of you for the comments. Hopkins has been insanely awesome. I am going to put up a new blog posting about my current status.
  7. I got progressives six months ago and the optometrist recommended them in large part because they give me three ranges: the top for distance, the middle for computer work (roughly arms' length), and the bottom for close-up reading. In reality, things haven't worked quite that way. I find it really annoying to wear them when I'm doing close-up reading, and even a lot of computer work, because I am warm all the time, to the point where my glasses fog up. The glasses were very expensive, and if I had to do it all over again, I think I would have stuck with my old (regular) glasses for at least another year or two. If I wasn't so warm all the time, maybe I would have a different opinion.
  8. I'm a professional non-fiction writer. I have degrees in a scientific field and also a degree in technical writing. I'm currently self-employed as a freelance writer in that scientific field, and I've been a full-time writer for the past 13 years. The biggest lesson that I've learned during my work, which seems like it would be just as relevant to you with fiction, is to first know what you want to say and then figure out how to say it. I can't tell you how many authors I've worked with who struggle with writing because they don't take the time to fully understand their topic and plan their writing before actually sitting down to write. On a major project, I used to spend 10% of my time planning, another 40% writing the first draft, and the remaining 50% doing revisions. Planning includes everything from doing research to make sure that I really understand the subject matter to organizing the flow of the material, developing a structure, deciding which topics to cover in which order, etc. I also think about my audience (who am I writing this for? what are their expectations? what do they already know or not know?) and my purpose in writing the document. What do you want to communicate to others? Is there a key message or group of messages that you want people to remember? Are you trying to entertain people, educate people, persuade people, etc.? I would guess that if you're going to write a work of fiction and you simply sit down and start writing, it's not going to go well. Not that you need to plan out every detail, but you need to do some high-level planning before you jump in. On the other hand, when you write, you don't want to overanalyze every word as you write it. You'll make yourself crazy. Focus on getting your thoughts down, and polish your words later. Be prepared to do a lot of rewriting. As I said above, you will probably spend more time rewriting than you spent writing in the first place, at least when you're first starting out. Finishing your first draft is a huge accomplishment, but it's only part of the whole process. I wish you the best of luck in your writing!
  9. Thanks so much to all of you for reading my posting and encouraging me to hang in there. Some days I really need that. I go back to the second neurologist today to pretty much beg him to give me some sort of treatment. Then I see my pdoc for the last time and am going to talk to her about the possibility of my meds causing these symptoms. Then I go to PT. And somewhere in between all of that I am supposed to be working. Someone told me last week to try to take things one day at a time. I told her that often it's more like one hour at a time. I just keep putting one foot in front of the other (when my feet are cooperating) and I chug along.
  10. I get terrible nausea from some vitamins. I was trying some multivitamin many years ago and I would be at the brink of vomiting shortly after taking it. In that case it was pretty obvious what was wrong. I get mild nausea now from some medications, so I always have some breakfast before taking my morning meds. I've also found that the gummy vitamins don't bother my stomach like the regular vitamins do.
  11. Thanks to all of you for your comments. The pain is bad at times but generally manageable. My GP has prescribed me muscle relaxants to use when the neck and shoulder pain gets particularly bad because we know that's largely being caused by muscle tightness. We still don't really know what's causing the foot pain, but it's not muscular and the muscle relaxants don't help it. I'm concerned about all the other symptoms that I have, which both the neurologists seem to just shrug off. Because most of the symptoms come and go so much, the neurologists don't have hard evidence of them, and I guess they don't believe me or at best think I'm exaggerating. Their own tests have shown that I have loss of sensation in my legs, balance issues, reflex issues in all four limbs, etc., none of which were there when they tested me last August. They can't explain most of these issues, but they don't care to investigate them any further. It's maddening. To add insult to injury, I tried to make an appointment with an endocrinologist yesterday because several of my symptoms are autonomic related and that could indicate a problem with adrenalin or other hormones that would best be addressed by an endocrinologist. The completely unhelpful lady I talked to at the endocrinologist's office refused to allow me to keep an appointment because I do not yet have a diagnosis that clearly indicates an endocrine-related problem. How am I supposed to get a diagnosis if I can't see the specialist? These folks seem to be in the same racket as the neurologists, who wouldn't allow me to refer myself to them either. Rheumatologists have no problem with this. I am not sure why some specialists think they are special snowflakes but I beg to differ...
  12. I know, and I've been checking those out. My interest in asking on CB is that the primary treatment for this form of neuropathy is typically antidepressants and other psych meds. So far my neurologist and GP have come up with two ideas to help with my pain, and my pdoc has shot them both down because they affect serotonin and may have nasty interactions with my existing meds. I'm looking for a new pdoc (since mine is moving next month anyway) who is familiar with neuropathy treatment and might have some non-psych med suggestions for me.
  13. I have, and some of the information in there is inconsistent with what I've read from more authoritative sources, unfortunately. I spent a good chunk of yesterday reading more about small fiber neuropathy in general, instead of just looking for info on my variant, and nothing I read was encouraging. Most folks have pain from the neuropathy, so treatments are heavily focused on suppressing pain. That's good, but I also have motor and autonomic issues in addition to sensory. For example, my blood pressure keeps skyrocketing for no reason, and sometimes I have trouble swallowing. I can't find anything about treating those issues. I think what makes me so nuts is that I've been diagnosed by two neurologists as having an incurable and largely untreatable disease, but neither of them has made any effort to help me with what treatments are available. They seem to think that my situation is no big deal and that I should be fine with living with these symptoms without any treatment or further investigation. Meanwhile, I continue to get worse from week to week, and I wonder what is next.
  14. I have just been diagnosed with non length dependent small fiber neuropathy. (See rant at Looking for anyone with the same condition. There's very little information on the Internet and my doctors are pretty much useless.
  15. It's rapidly approaching infinity. I think this week it's ten plus a few to be taken as needed that I haven't taken lately. This is a good reminder to me to update my signature...