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Everything posted by lillybits

  1. Hi there I know i havent been on here much but I was wondering if anyone knew of any good docs in southern california! I am mainly looking for some one that specializes in ehlers danols and pots. I am in riverside county. thank you!! kim
  2. does anyone know of any autonomic specialists that take the state insurance? I just got denied the mayo clinic and live out in kingman but am willing to travel anywhere that i need to for health care.My primary was sure I could get referred to mayo but insurance denied it. Also is a rhumatologist a good place to go for ehlers danlos?Thats where i gt referred to. I used to see a geneticist in wisconsin for it. thank you, kim
  3. I was a nurse and have been out of work now for almost 2 years and still haven't seen any permanent improvement...
  4. I have eds, mcad and multiple other things I didn't get as bad as I am now until my youngest was 2 . I feel a little better since we moved back to Arizona from Wisconsin. But still nothing like I was before. I miss being able to tire out my kids. Now I tire out walking across the house
  5. Thank you all as soon as my new insurance kicks in I can see a doc. I hate being in between doctors. I get all angry with Dr with no concept of what we are all going thru I stop going. Now I will try the heating pad. I can't tolerate the hot showers. The florinef I don't tolerate either makes my abdomin swell. ~kim
  6. i couldnt even go out during the winter in wisconsin. I still have issues with my hands, feet nose and ears out here in kingman but I do have raynauds and the docs said that it can be aggervated by my blood volume and pooling problems..... kim
  7. Does anything help with chest pain and does anyone know what makes it go away? I have had real bad chest pains this last week to where when we were out christmas shopping i had to crouch down on the floor ang put everything down. it takes my breath away... it has been a long time since i have had pain like that in my chest and its starting to consern me and I could really use some help here! thank you, kim
  8. thank you! i actually feel some improvement since getting out here in az so i am very hopefull on my quality of life getting better!
  9. i have learned to take life an hour at a time i am learning to just sit or lay down as soon as i can. just trying not to land on my head ....i know this is life long for me due to my root cause but i looooooove my good days they are amazing! I constantly wish i could go back to how i was before i got sick but it is what it is.. i will be on a quest to find new doctors out here in az now........kim
  10. We are packing up the house right now getting ready to move on the 10th of november. we are moving from wi to az. Right now I can only pack a couple boxes then have to lay down for a while.I am having a real hard time functioning and it has been like this for the last month or so since i had pnemonia. I still havent recovered from that what so ever.any tips on the long drive and all the fun stuff that comes along with all this? I did a lot better in hotter dry climate this last summer and I lived in az for 16 years before I got out here 6 years ago and pots kicked my butt. I know I have had a lot of my health problems for most of my life and I am hoping the change to havasu improves my quality of life. Right now i am bed /couch ridden again.... thank you, kim
  11. thermotabs! salt on food, in my gatoraide and salty snacks! kim
  12. that is miserable. mine seems to wax and wayne. cold weather seems to make mine worse. i try to eat and dring everything luke warm to room tempurature . soft foods are my friends or atleast things that are easy to swallow whole. everyone is scared to give me anything that lowers my bp so i dont get any pain killers at all. they tried the tricyclic antidepressants that help with nerve pain but they always make me psyco. ha ha i feel real bad for my husband and kids when they try a new one on me. I know the other options are insanely invasive. burning off nerves and whatnot in the center of your brain has waaay too many complications for me to consider even tho most days I want to chop my own head off!I hope they find a relief for you soon!
  13. eds is constant never takes a day or a minute off. joints slide in and out of place constantly, I can scratch my whole back with one hand and no help ha ha the slightest wrong move wil sublux my ankles among other joints in my body, skin is very streatchy, thin and velvety. hope this helps some! kim
  14. i do the b 12 injections and sublinguals. it helps quite a bit and I do feel a lil bit more normal when i remember to take it ha ha
  15. the cold makes me feel worse. especially this morning when it is rainy, cold and overcast. . the weather changes are really hard on me this year. seems to be getting worse but mabe i am just getting to be a big old baby ha ha . Any way not looking forward to winter here in wisconsin!~kim
  16. have u been checked for cellulitus?
  17. welcome and hope you find everything helpful. this entire thing is a huge rollercoaster ride so make sure you bring a big bottle gatorade with you where ever you go! kim
  18. I had most of my testing done at mayo in rochester and it was a whirl wind of test after tests and they didnt take me off of any of my meds before testing.. so i dont know what all they are going to retest. so far its just been blood and urine. i see my gi doc, autonomis dr at frodert and genetics at childrens right across the street.
  19. chelimski is awesome I live in wisconsin and go downt to milwaukee to see him. or really you see him your first visit then after that you see his np mary who is also great their nurse stacey is very helpful and treats everyone with respect. they always answer your calls or atleast return your calls. you do need a referral from your current neuro or treating doc. he will get you going in all the directions that you need. some of the testing will be redone but they understand the low blood volume issue and space appointments and blood work nicely. plus you dont have to come back to that hospital to get your bloodwork done all the time either. they will hand you the orders to get done on a day that works best for you and just ask to get the results faxed to them. I have seen them twice so far and I go back again tomorrow.good luck to you!!! kim
  20. thank you very much for that. we are just backwards. my husband had health problems first. i was working as a nurse, comming home taking care of my husband and our kids, doing the house work and all that coes with the family. he was un able to work due to his back injury.then he had a heart attack so it was hospitals dr apts, paperwork he was angry . he has never had to be in the care taker position before and i have never been a good patient. so this is a whole new role for both of us.
  21. off topic here but I want to know what it is like for you with your husband being sick. I am interested in seeing what it is like dealing with someone like me. i know i stress my husband out alot with my medical and physical mess. if you wouldnt mind telling me what its like being on the outside looking in I would greatly appreciate it! kim
  22. yes i had that done a year ago and it cam back normal I go back to froedert next week so hopefully they will be able to fugure some things out. they have me on the z pack right now hopefully that will level things out.
  23. all that info is great! i have high ana, along with the seeminly endless medical issues. we have been trying to figure out where i have all this going on and my mom has graves but i got my vascular eds from my dad. to add to my day i went to the doc and now have pneumonia, passed out walkig down the stairs and now have a broken ankle. yae meee ha ha . kim
  24. the way my heart beats from time to time i can only explain as a fish out of water flip plop beat. it is very unnerving. i cant breathe during these episodes either. i dont go to the er because they never know what to do with me. kim
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