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kitshalleen

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Everything posted by kitshalleen

  1. hi everyone, it's nice to get so many replies, although i wish that it was for a more positive reason. right now the only people in my life are my parents. when my friends are in town, it's nice to have them over at night. i don't care if the place is messy (which it is). it's hard thought to meet new people. what do you say? "well you'll have to come over here, and i hope you don't mind if i'm in my pajams". i find that it's really hard for people to understand. anyway, right now i'm too sick for that. i'm coming off of a medication, which has been a nightmare. hopefully, after th at i'll feel a little better. knittng for charity is a good idea. that's pretty much all i do, besides watch tv. i knit chemo caps. anyway, i was thinking that it can be hard to set up a chat room when we are all up, although kudos to anyone who even knows how to set up a chat room. i would like to find someone who maybe is sick but also has some similar interests as me. i used to talk to a girl who was around the same age, and we would just e-mail every few weeks, and talk about being sick, and whatever else that was going on in our lives. we also talked a lot about who we were before we were sick. we sort of lost touch along the way, but it was nice for a while. so anyway, maybe we could all try to find a pen pal--someone who isn't just sick, but also shares some interests. what do you guys think? i'll start. here's my bio. i'm 33, single, been sick for 10 years, was in medical school when i got sick, and love to knit. i'm not particularly religious, which i guess is unfortunate since a lot of people find great comfort at church. okay, i'd write more, but the computer is bothering my head. hope some people are having some good days. take care, julie
  2. dear homebounders, that has a nice ring to it, doesn't it? anyway, i know that we all have varying degrees of dysautonomia. well i'm mostly homebound. i don't get that lonely usually because i'm too sick to want to talk to anyone. right now it's early morning, and i haven't seen the outside world in such a long time. my schedule is reversed so i generally sleep during the day and am up at night. yes, i'm like a bat or an owl. i'm starting to feel like i'm not part of society though. well i guess that i'm not. i thought that it might be nice to talk to others in my situation. maybe have sort of an online support group. to tell you more about me, i spend most of my time knitting. i'm in my 30s and i'm single. all of my friends have moved out of town, and well it's not easy to make new friends, when you are in my situation. anyway, if anyone is interested in talking, let me know. take care, julie
  3. hi everyone, thanks for the suggestions. i'm going to go and be evaluated for interstital cystitis. it doesn't hurt when i urinate or anything, so i don't think that this is the problem. i also have no pelvic floor dysfunction, but thanks for the suggestion. i've also had the tens unit, with no success. has anyone had a diagnosis of pelvic congestion syndrome? that's what i'm going to see a doc for next. thanks again, julie
  4. Hi everyone (specifically the gals), I have pelvic pain almost 3 weeks out of the month. It starts around ovulation and ends right after my period. This is almost 3 weeks. Sometimes it is completely intolerable and no medicine works. I have run out of options, because I don't tolerate the birth control pill. It makes my headache worse. I'm seeing gynecologist after gynecologist and no one knows what to do with me. There is nothing wrong with me. I don't have pelvic inflammatory disease or endometriosis. I feel like it's a combination of my regular awful cramps, blood pooling, and maybe something else. The problem is that the pain is completely out of control, and I'm just getting really depressed. I've been sick for 9.5 years and I think that it's really finally getting to me. I went to a new gynecologist today and of course there were no new answers, and I just feel like I can't take going to new doctors anymore, yet I have to. I have 3 appointments this week and next, and I'm just exhausted. I was wondering if anyone else had similar pelvic pain and had any ideas. Thanks so much. Julie
  5. hey everyone, I was wondering what kind of doctor tests for adrenaline/epinephrine issues or abnormalities. does anyone know? i also made an appointment with an endocrinologist because i've never seen one. the problem is that they all specialize in specific endocrine issues. i didn't know which one to pick. i know that my thyroid is fine. i just randomly picked adrenal gland issues, because i've never been tested for that. i wish that they had just a general endocrinologist. oh well. hope everyone is doing okay. take care, kit
  6. hi everyone, i can't tolerate a birth control pill with estrogen in it, because i have horrible headaches, so now i am on norethindrone (which is progestrin only). anyway, i'm very, very light-headed on it having trouble staying awake at all. i've only been on it for about 12 days. i also just started spotting and having cramps. i'm just wondering if there's any chance that these side effects will get better. i'm almost bed-bound. thanks so much! kit
  7. hi gals, okay, so i think that we've established that dysautonomia patients are worse during menopause. what i'm wondering about is what happens after menopause is over. do you go back to your normal dysautonomia self or do the symptoms stay worse? thanks, julie
  8. thanks so much for the replies everyone. i definitely won't have my ovaries removed. i'm 32 and that would put me into instant menopause, and worsen the pots. i know that even a partial hysterectomy will nto help with monthly headaches because i still have the hormones, but it would help with the crampig. fortunatey, i don't have pms, sothat won't be a problem. i've looked at info about where they just remove the lining of the uterus and it seems that it does have a high failure rate. i don't have heavy bleeding. that's not my problem. i just have heavy cramping. anyway, i'm seeing my gynecologist next week but hopefully talking to him soon. he's not insisiting on anything. he does think outside o the box. however, i just can't deal anymore. i just tried the nuvaring, and am still having horrible cramping even though i took it out after 6 days. ugh. talk about desperate. haven't we all been there! happy summer and staying in the hosue to avoid the heat. it's prettyn seeing all of the birds outside though. julie
  9. Hi gals, I hope that everyone else is doing okay. I am completely desperate. I am 32 and thinking about a hysterectomy because of my terrible incapacitating menstrual cramps. I do not have endomentriosis, fibroids, or anything wrong (besides POTS). Anyway, I have a chronic headache from the POTS and the hormones from birth control pills make me much worse during my non-period days. The hormones also seem to increase cramps during the non-period days. It is weird. I have tried a bunch of anti-inflammatories which help mildly and even vicodin, but nothing works enough. I'm at my wits end. Does anyone else have this problem with terrible menstrual cramps and not being able to tolerate the birth control pill? Any ideas out there, before going through a surgery. Thank you so much. Julie
  10. hi ladies, does anyone get horrible, horrible menstrual cramps? i absolutely cannot leave the house with them and can also not tolerate birth control pills. sometimes anti-inflammatories and heat will work, but only sometimes. my doctor has given me vicodin and ultram and neither work. i don't know what to do if narcotics don't work. any suggestions? julie
  11. hey everyone, okay so i've established that a recliner is key, but it doesn't really work out in the kitchen. i'm having trouble eating, let alone making something to eat. i can't stand for the 3 minutes that it takes to heat up a microwave meal. i was thinking tha tsome sort of rolling chair might work. does anyone have idea for this? happy day! julie
  12. i just wanted to say thanks for all of the replies. i will definitely look into this. julie
  13. hi everyone! i'm unable to run errands because of my illness. i would be willing to pay someone to help me out, just for a couple of hours a week. i'm not sure where i can find someone to help though. i'm not affiliated with a church, so this wouldn't be a good source. however, for other people reading this, i know that might be a good place to look. i need the basics like groceries and even some cleaning. does anyone have any suggestions? happy dysautonomia days (as if . . .) julie
  14. hi everyone, i know that mestinon is a hot topic these days. well i am on 30mg a day and so far it is not helping. i'm not sure if i should go up or not because it seems to be making my already-present headache worse. has anyone been getting headaches from it? also, i seem to be more orthostatic on it. it is pretty weird. happy early valentines day! kit
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