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morgan617

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Everything posted by morgan617

  1. great job, w3hat an accomplishment. and already talking about going onwards and upwards. proud of you. morgan
  2. what a terrible experience. i am so sorry. most doctors will tell you if they think your problems are life threatening. but it is a good idea to see an electrophysiologist as he or she will address not only the valve problems, but the arrythmias too. i know heart concerns can be very scary. this is just a scary disease as it seems every day there's something new to contend with and so few doctors that deal with it. the best thing to do is get on the net, find out all you can and learn to be an advocate for yourself. knoweledge is power and any doctor put off by what you know is not going to be much of a help to you. find someone open and willing to listen and learn. it is difficult, but not impossible. good luck and hang in there. morgan
  3. jessica, so sorry and what a way to find out! i had a similar experience and know how disheartening it can be. what jan says is true, you are still very young with many chances ahead of you. hang in there and something is sure to come up. i know we can all get very discouraged, and it's nice to have the support of people who understand. there will be something better for you, and having worked in offices, i can tell you from experience the turnover is very high, so there is a good chance there will be another opening there before long, if that's where you want to be. morgan
  4. i had pft's done and it actually showed me above 100% so then i wonder why i get so short of breath and just feel air starved so often. it's a comfort to know i'm not alone here with this weird thing. that's my why can't i breathe look. sometimes my rib muscles get sore from trying to get that one breath in that will make me feel better, then 2 minutes later there it is again. the crummiest sensation. morgan
  5. i take only three meds but not for oi. one is for malignant htn, and one for meneirers, and one for hormones. probably the most important if you ask family but am so sensitive to everything, just don't like to take meds. have tried about 1000 or so but have ended up in hospital from reactions, so don't as a rule mess with them. morgan
  6. guess i may be only one with negative. my hubby has narcolepsy and developed a drug induced hepatitis with one dose! he was sick for 6 weeks and had to have blood tests every couple of months for 1 year. so i just recommend that you get periodic lft's with it, but am glad it is helping so many people. my doc discussed it with me but decided against it as i am so sensitive to everything. i fall asleep all the time especially in the afternoon and early eves. then wake up with hanover feeling. kind of gross so i try really hard to stay awake. morgan
  7. that is my brain fog expression lack of concentation, forgettgullness, i use to be able to spell and type, can't remember if i've told people stuff or not, can't remember if i took meds, lose train of thought in middle of sentence, short term memory loss, and all of the above post. see can't even remember who posted. my hubby can always tell, because i slow down, he says my eyes are "funny" slurred speech and all cognitive stuff. not making much sense here, brain fog lol. morgan
  8. as a person who had adenomyosis and severe pelvic congestion, i must say a hyst was the best thing i ever did for myself. but that was in 86 and things have advanced so much, it's hard to say. i think a lot depends on age and other factors. i now wish i would have had my ovaries out too because they give me all kinds of problems, but hindsight is always 20/20. i have seen these procedures, but do not know a lot about their effacacy. endometrial ablation has become quite popular and is much less invasive. usually outpatient, but that's for the normal folks. good luck. morgan
  9. i have nothing against family practice doctors, but they tend to know a little about a lot. you are better off going to a speialist. as above, i would advise calling ins carrier to see who's on their list. good luck. morgan
  10. i get the shakes out of the blue for no apparent reason. in the last week i have burned myself from the iron and boiling water from tremors or just hands giving out. hard to explain. just dropping a lot of stuff and clumsy. my typing is getting awful. have a big list for doc next time i go in. nothing seems to help mine, it just comes and goes as it pleases. and you are right, it's just crappy. morgan and painful recently got two blisters on fingers this morning
  11. melanie, i couldn't even get accepted to mayo because i have chronic fatigue. who doesn't? i know that waiting can be harder than finding out what's wrong, but hang in there, and will hope for the best for you. morgan
  12. antihypertensives do this to me. and occasionally it just happens all on its own. very scary and frustrating. it happens to me when i'm sleeping most of the time. wake up gasping. yikes morgan
  13. there's a post here (brain fog) where someone says it's nice to have people who feel the same way. i think that is so true. i wouldn't wish this on anyone, but it's also hard when you think you're the only person with these weirdo things going on. i just sent in my story and then burst out laughing when i realized i hadn't put even half of the symptoms i have. talk about foggy. anyway, i think we all have really bad days. my hubby never says mean things to me, but i have clearly seen him totally tune me out, which is a little ouchy too. they are very good to me, but really can't know what i'm feeling. so it's wonderful to have a great place to go. and it's always okay to cry and feel helpless. or hopeless. we have all felt that, but just remember, it passes and sometimes the sun does peek through. and for the person who sent the nice message about my dog (this is bad!) thank you so much morgan
  14. i must say i do have a wonderful hubby and son who are very supportive of me. my husband will look at me and say, time to go, or go take a nap, or i'll fix dinner, after he's worked a 12 hour day! and my son carts me all over as i can't drive anymore. so i really shouldn't let people who mean nothing to me get to me, but sometimes it's just hard. what we want to do and what we do aren't necessarily the same. i hope as more knoweledge comes out people will be more understanding. morgan
  15. i used to work at a blood bank for over two years. it is NOT a good idea for you to donate. there are really strict parameters and my guess is they will say thanks but no thanks, but my bigger concern is what it will do to you. it takes a person 8 weeks to replenish the cells lost in a unit. if you don not react well you will feel crummy for a long time. i tried it once, and that was more than enough and let me assure you those are honkin big needles. morgan it is very generous of you to want to only 5% of the population donates which is pretty sad
  16. i am on event monitor too and the scheduler told me it was all in my head! i told the person hooking me up i have no patience for that kind of treatment anymore and he said he was going to report it. it is so frustrating. i had that stupid 36,000 dollar ablation last year for all in my head stuff. that makes a lot of sense anyways, my sis bought a ticket for me to fly down to see whole family. had to say no thanks. she understood but they don't. just one day in my shoes on a "good" day is all it would take for them to see. if you aren't bald from chemo, or missing body parts, it just isn't understood. morgan
  17. i have sjogrens, so if you have any questions feel free to ask. it is not a widely known syndrome and they usually only talk about dry eyes and mouth but there is much more to it. hope things go well. morgan
  18. i just swing from on extreme to the other. the slightest things can set me off and my whole body. i can be overeacting and my brain is telling me i am, but can't seem to stop it. when i talked to rheumy he said, it IS part of illness. that it affects neurons in your brain, so that made me feel better. however i do try hard to control out of contol stuff when i know it's inappropriate. i do a lot of apologizing to people. morgan
  19. futurehope, sorry you had to go through it too. but you are so right, our perceptions of ourselves are seldom as others see us. i have had serious bouts of depression in the past and now realize that the feelings i had then about myself were only my feelings. the people that loved me and cared about me had none of the perceptions of me i had of myself. i've never thought less of anyone for being disabled, but now sometimes hate myself because i am. we need to learn to hate the disability but not the person inside. life is often a struggle under the best of circumstances so we should be patting ourselves on the back for dealing with life under horrible conditions. even when we think we aren't coping, we usually are. and we all have different ways of doing that. morgan
  20. my son got deathly ill on it. the doctor gave it to him for migraines. he actually ended up in hospital. interesting to see he's not the only one as this was termed a mild inocuous drug morgan
  21. i was a nurse till last year. for 30 years. back in the days you didn't even wear gloves! i think runnergirl has a good point. i think my experiences have taught me to be more aggressive about getting care. to be a real advocate for myself, although i've been called crazy more than once. but if it is a viral thing, i think everyone who is vulnerable will be exposed regardless of profession. too much stuff out there now not to get exposed. morgan
  22. sorry about your bad day, i too have been having an awful time. my kitten went into icu with pneumonia and severe asthma on monday, then two days ago my dog stopped eating. my kitten is sloooly improving but we found out our dog had terrible cancer and had to be put down. yesterday, with our cat down the hall in icu. my animals are like babies to me and the stress of this has really taken it's toll on an already too stressed body. so i can barely function. they are the sweeties that keep me company all day when my son is in school and hubby at work. it just doesn't seem to take much of anything to comprimise us and so any kind of stress is a killer both physically and emotionally. i hope you star feeling better very soon, and hang in there. dan hello by the way. haven't heard from you and my computer got wiped out, so don't have your email. can't remember how to get it off ndrf. talk about brain fog.... morgan
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