corina Posted May 22, 2008 Report Share Posted May 22, 2008 hey guys,since i wrote about starting rehab (can't remember when i wrote it, must have been some time ago), a lot has happened and also alot didn't happen. i'll keep it short: i was placed in a wrong group, the head cardio didn't believe i have pots and told me to start the rehab procedure (examination and paperwork) all over in a different group. which i did, after calling my neuro, asking him if i had become insane (not having pots without me knowing it???) and if he would back me up on it. when he told me that i do have pots, but that there is an argue between severla doctors where they fight about this being a disease or something "just between the ears".frustrations came up again (as it is THEIR fight, i just want to try to get some better), but i decided that rehab is what i do for ME and went on with a new procedure.had a GREAT examination with a lovely new doc, was over the moon, and she promised me that i could start the next week.which i did not. they didn't let me know when, what time etc. and i called and they didn't know, and a week later i called and they didn't know . . . . . . . .after i had a good (telephone) conversation with the lovely doc again i was promised to be called, which didn't happen . . . . but then, when i didn't expect, they called me telling that they were "fully booked" and that i would have to wait another two weeks and if i hadn't heard from them by then i could always call them and ask. the thing is that emergency cases come in between, which of course i understand, but i'm at the point of not wanting to understand anymore, i almost want to become an emergency case myself.i am back where i was, but now with all my frustrations again. i am so very tired from all the fighting i (or should i say: we) have to do to get what we need. and there is so little energy, i wish they could be in my/our shoes for just one day just to feel how it's like.i thought i'd let you guys know how things are, as you were all so supportive when i wrote about starting the rehab. and i did choose a very nice bathingsuit which is in the closet for quite some time now . . .thanks for listening,lovecorina Quote Link to comment Share on other sites More sharing options...
carinara Posted May 22, 2008 Report Share Posted May 22, 2008 Hello corina,i just wanted to let you know that i went to rehab myself last year. When i got there not one of the doctors even heard of POTS before! I gave them all the informations i could ,to inform them. Some of the doctors believed in it, others didnt, I also gave them the phone Nr. of my POTS doctor from a famous universitiy clinic, but only one rehab doctor contacted him. The rehab stuff saw how i suffered and still you could see, that they thought i just didnt try hard enough , at the beginning of the rehab, they even tried to get me jogging with the running group in the hottest summer, but i couldnt of course(even though i overdid it most of the time, just by eating a tiny meal or something and i got real symptomatic, they couldnt relate)The best result of this rehab for me was, that the few doctors who kind of believed me, understood me a bit and were friendliy enough! and that i didnt have to worry about everyday things like, cooking, housework and going to work. I was able to just concentrade on me and watch myself. The massages i got a few times a week i enjoyed! But the most important experience was, that i could try and practise how far i can get with my condition and knowing that medical stuff is always around, just in case!Hang in there!carinara Quote Link to comment Share on other sites More sharing options...
carinara Posted May 22, 2008 Report Share Posted May 22, 2008 Just one more thing. I forgot to mention that just before my rehab was finished, i found out that the rehab doctors made a shellong test (because they didnt have a TT) on a woman who had some problems whilest standing, they even told her to start wearing compression stockings! So after all, my presence there and the information i gave them, might help other people in the future, you never know :-),Take care Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 22, 2008 Report Share Posted May 22, 2008 Corina, I'm sorry that you're having to expend so much energy and time on getting what you need, and getting people to believe that you have a real illness. I hope that you get the services you deserve and start to feel stronger.Nina Quote Link to comment Share on other sites More sharing options...
flop Posted May 22, 2008 Report Share Posted May 22, 2008 Corina,it is rotten that you are being passed around like a parcel! I hope that when you get properly linked up with the right group (and the nice doc) that the wait is well worth it.Flop Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 23, 2008 Report Share Posted May 23, 2008 Hi Corina,I am sorry that you are getting the run around with the docs and the therapists. I hope that your turn will come first because it will surely help you retrain your body. Quote Link to comment Share on other sites More sharing options...
corina Posted May 23, 2008 Author Report Share Posted May 23, 2008 thanks for your support guys, i really appreciate that!i do know that i want this for me, as it is my last hope to become some better (healthwise that is). but it takes so much energy from me that i keep on thinking: is it worth it? i just hope it will be, so the story will be continued!!!love,corina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 27, 2008 Report Share Posted May 27, 2008 Oh Corina! I am so sorry this has been going on. You should just go in as an emergency. The frustration is so hard on our bodies, and it is doubly bad when you see a light at the end of a loooong tunnel and then someone keeps trying to shut it off!I hope you get some help soon! Sending you hugs sweetie! morgan Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 28, 2008 Report Share Posted May 28, 2008 Corina--I hope you can get in to rehab soon. I know you will make the most of it. I am so sorry that you have to deal with these doctors who still don't know what POTS is. It's amazing -- and terribly frustrating. Thinking of you, Katherine Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted May 28, 2008 Report Share Posted May 28, 2008 Ugh! The frustration! It adds and adds to what we already have to cope with. So sorry you are having such a tough time. I hope they get it straightened out soon! Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 28, 2008 Report Share Posted May 28, 2008 Corina,I'm so sorry about all of the frustrations you are facing while trying to start rehab. Keep fighting for the help you need. I hope something works out very soon for you.Rachel Quote Link to comment Share on other sites More sharing options...
corina Posted May 29, 2008 Author Report Share Posted May 29, 2008 thank you so much guys, for your support. it makes me feel so much better to know you do understand and you know how it feel. i would like to add more, but this is not the right time (too potsy right now) but i wanted to let you all know how much i appreciate you guys being part of my (dysautonomia)life!take care,love,corina Quote Link to comment Share on other sites More sharing options...
flop Posted May 29, 2008 Report Share Posted May 29, 2008 You're welcome Corina - we're always here.Hope you feel a bit less potsy soon,Flop Quote Link to comment Share on other sites More sharing options...
medicalenigma Posted May 30, 2008 Report Share Posted May 30, 2008 Corina,I am new here and to POTS but I didn't realize it is so illigitimized by drs. I am sorry you have gone through that. I have gone through that with most of my other diagnoses. I've been tentatively diagnosed by a dr at mayo... i wonder if that makes a difference or if they'd not believe him either? How frustrating these illnesses are where you have to fight so hard to prove you are ill on top of dealing with such debilitating symptoms.Hope you were able to get the help you need. I will be trying to get rehab once I am fully dx'd because I cannot exercise on my own and am weak and all muscles atrophied...bestNJ Quote Link to comment Share on other sites More sharing options...
DancingLight Posted May 31, 2008 Report Share Posted May 31, 2008 Corina,Sorry it took me so long to reply to this post.AAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHH! I am just so frustrated for you. I feel like they just send your hopes up and down and up and down. It's not okay that they tell you one thing and then do another.You are such a fighter (like Hillary! ) and I just wish that someone would HEAR your fight, your cry for help, your willingness to do what it takes to be as functioning as possible. It is exhausting to be sick to begin with, but when we have to fight the medical system for what we believe are our basic rights to care and service, it is demeaning, demoralizing and EXHAUSTING.I really hope you will get to do rehab, because it is what YOU want and you deserve that shot.Thinking of you always,Emily Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted May 31, 2008 Report Share Posted May 31, 2008 Hi!Wow, it sounds awful and frustrating! I hope things start to fall in place soon for you! I applaud you for keeping up wanting to do it and fighting the evil red tape in the process!!! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted June 1, 2008 Report Share Posted June 1, 2008 corina, will you eventually be allowed to do the correct rehab program? You have waited now so will space open up? I know how tiring all the self advocacy is and you are feeling weak now but maybe you could call and see if they will take you now.Hold onto the hope that you will eventually get the right treatment. Is there another place you could call? Sending you loads of support and hugs.best regards,tearose Quote Link to comment Share on other sites More sharing options...
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