corina

Amy,

I think mostly everything is already said and it's all true. I think my husband suffers as much as I do sometimes and that's just because of all the things we can''t do together anymore. Then there was a period he acted really grumpy until I said: okay, that's it we have to accept this because if we can't we can't stay married. I don't want this POTS to destroy your life, it's not what we have been chosen but we have to deal with it or split. Ofcourse we didn't split (I guess I knew that ) and as if he turned some switch, he is accepting our situation and now we BOTH are trying to make the best out of it. Ofcourse it's difficult (as for everybody, even for my children who new a perfectly healthy and very active mommy) but when you love and respect eachother there IS a way to go on. Hope this helped you,

Corina

Jessica,

I'm sorry you feel bad. Don't have any other advises then already given, just wanted you to know I'm thinking of you and wish you all the best,

Corina

Stacey,

I bet you would never had thought you would be a happy POTSy (in fact this bracelets are making me happy too, MANY thanks to you for bringing this up!!!),

Corina

Goldie,

no you're right, I'm from the netherlands and yes they WERE very tolerant with disability. Since the last two years things are changing and I know that's for the best because (and I feel very embarrased to tell you) there were people having disability who absolutely didn't deserve it. I know this sounds strange because I do have disability, but there are people who want to do a study and a job together and when it turns out they can't do that they quit there job and still get paid for it and go on with their study. There also are women who get a job and "become ill" they get disability and can stay home with the children. And you know what? They even admit it on television. And there are many more examples. There were people having disability and still they had a (different) job I know a few of them personally. I'm very sorry I react so strongly but this is what really makes me angry because it's so unfair. So nowadays things are MUCH more difficult. The doc who had to see me for making a decision about me having disability told me I had nothing (didn't your cardio tell you? she asked). My cardio said she wasn't blessed with too much knowledge and wrote her a letter how things really are (so did my familydoc and my PT, I really love them for doing that for me). So I think you can understand why I'm feeling so sorry for everyone around here who is disapproved, I finally won ( that's more than a year ago now) and they still owe (spelling?) me money. They are going to stop the partial programme as well btw, only some who can't work for 100% may keep there disability. Everybody will get a new research in how they are doing now. So I'm not even sure I can keep this disability. So Danelle, find everyone you can find to help you out, go for it.

Corina

Mindy,

it's a great idea, though I think you better not work at night (sorry, don't want to sound like a concerned grandma ). I think the tag idea emily suggested is great (to give an angel to an angel is a brilliant thought don't you think?). And like Katherine said, with the Holidays coming up, this must be the right moment.I think it's great there are such creative and thoughtful people,

Corina

Danelle,

don't have anything extra to say, everything is said before. I cried a lot of tears when I was disaproved the first time. But after the tears it made me feel strong: like Herdswoman said People with POTS can do hard things.

Go for it, wish you all the best,

Corina

Emily, you always make me laugh. Really, you are promoting your stuff so very good that for one minute I thought: does she get paid for this or what . You wrote it yourself: you don't. I really like your attitude! BTW I thought the microwave was only for cooking: I don't have anything to put in to get heated, you make me very curious. I'm considering the slippers and the electric blanket, alhtough the blanket is difficult because it may take me hours to gt warm, when I AM warm it's like **** . Well, anyway, I think about it and thank you for making me laugh,

Corina

Thank you very much Nina, it's just that I'm having severe brainfog and I'm trying very hard not to give up because I love talking to all of you but it's very difficult to find the right words these days. Anyway, thank again,

Corina

Nina and Louby,

It's so strange to me you both have been to Amsterdam. Well I think strange is not the word I'm looking for but I can't find another word for it. I live a 15 minutes drive from there. It made me think that if anyone of you guys come to Amsterdam I would come to Schiphol (Amsterdam Airport) and welcome you! So, who's next?

Corina

Hi Ernie,

I know it's a struggle to be so lonely. I don't work either. I do have two children so that makes things easier but not being able to take them out is painful for me. I do try to organise some company. I invite people to come over to drink a cup of coffee or tea, I sometimes ask someone to take me to the library ('cause I love to read but I'm not always able to read because of brainfog). What I'm also trying to do is make a list of musea where I would like to go and ask my friends to choose something from the list and go there with me. I find this a bit difficult (I feel embarrased to ask people to take me out) but visiting a museum is something I like very much so I try and ask them anyway. I don't know whether this helps you but I want you to know I do understand you and I would like to help you out. If you would like, you could email me, so we could talk about our hobbies, studies, countries or whatever you like. It's just an idea, if you don't feel like it, then just don't, no worries. Hope you feel a little less lonely now you see so many people are thinking about you,

Corina

Nina,

I'm so excited about the bracelets. I was talking to my husband about it today and I'm making a list op people who I want to give a bracelet to (is that correct english? ). I'm really curious how the bracelets look and I think I will feel very much part of our POTS-family. Can't wait to order them and can't thank you and everybody else who worked on this enough. Good luck,

Corina

Goldicedance

yes, I'm with you (and others). I can't get my temperature right. I used to take a hot bath every day about noon and got to bed afterwards to stay warm for a couple of hours. Nowadays I can't tolerate the hot bath anymore so I have to take a quick hot shower. I never sweat during the days but at night I'm like in a swimmingpool, I really don't like it. I was diagnosed with menopause when I was 34 but still have very irregular and strange periods. In my last bloodtest my endocrinologist didn't see anything of menopause. I asked my familydoc if I'm getting crazy or something and he said I prbably am (and smiled, we get along together very well). The feeling cold during the day can be very bad, I think I have to read Emily's post again and order some of the heated stuff she has!

Corina

Hi Nina,

since I'm having "a little" brain fog, I'm having a little dificulty with translating everything you wrote (and typing this for you) so I'll stick to just let you know I'm thinking of you and feeling sorry for all the trouble you have. I REALLY hope things work out well for you, best wishes,

Corina

Lisa,

I'm very sorry for you to have this, but glad they found this aneurysm. Can't do anything to help you but want you to know I'm sending good thoughts to you and REALLY hope this will work out well for you. Best wishes,

Corina

Tearose,

if this is what's making you feel strong, then go for it! Good luck on your decision,

take it one step at a time,

Corina

When I was not approved for disability the first time, they told me I could work as a POSTMAN. In the netherlands that means you get on your bike with all the post and packages and walk for 8 hours a day delivering the mail, for 40 hours a week. I just couldn't believe it, I couldn't even walk for more than 10 meters! In the netherlands you get disability from a specialized insurance company. When I told them I would go to court and take all my doctors with me (because they all agreed I REALLY couldn't work anymore and they even wanted to go to court with me) I got approved. It was a victory with a smile and a lot of tears, 'cause like all of us, I really would like to go out and work. So try and keep your head up, dry the tears and go for it, you deserve it.

Corina

Tearose,

I'm very very sorry for you. This makes me mad and feel sad. In my opinion the judge should COMPLIMENT you for trying to work while you actually couldn't do it. I hope you can work this out with your psychologist. Don't feel sad about needing a psychologist, in having all this POTS-problems in the last more than three years I see my haptonomist every once in a while. She helps me out with my mental problems and helps me find the right road again. POTS isn't just physical (as we all know). Wish you all the best tearose and hope you get your disability (I realize this 6 weeks will be awfull long for you),

Corina

I've had tens treatments at my PT's office many times. It was meant for pain control in the lower back. It helped me a lot and it didn't make my symptoms become worse (although I didn't know I had POTS at that moment, had all the symptoms but wasn't diagnosed yet).

Corina

Ling,

I'm soooo happy for you, you have found this cardio!!! I have never heard of this treatment but I know this way of thinking. I really do hope this will work out for you and yes: I will come over to South Africa when this seems to be THE solution . Oh and Ling: if this works out well for you, I wish you all the babies you want Good luck,

Corina

I have this neck pain since a week or three. Don't know where it comes from. I thought maybe because I try to do most things while seated (like doing the dishes, cooking, preparing the vegetables for dinner etc.), that may be bad for your body (i think the word is posture but I'm not sure, sorry . . . ). I sometimes have trouble keeping my head up (like it's much too heavy ).My PT is helping me out with this, she also advised me to buy a chair in which you can lay your head down while seated. I'm considering that now.

Corina

Nina,

you made me laugh when you wrote about your greeting. I wish you good luck on this and I'm sending good thoughts to you and hope it will help you in having this test.

Corina

Radha,

I'm very sorry you are doing bad. I know I can't, but surely would like to sent you all of my doctors and physical therapist 'cause eventhough dysautonomia is something most of them didn't hear about before they are always there to help me out and even come to my home if necessary. Is there any possibility you can find at least one doctor to help you out? I'm sending good thoughts to you and hope you will feel a little better soon.

Corina

Thanks for explaining Merril. Must say I LOVE valentine's day, so to everyone on the board HAPPY SWEETEST DAY (though I must be too late by now )

Corina

Radha,

I just asked in another topic how you know you have low blood volume (didn't get the answer yet, so maybe you can help ,me). Is it something that can be tested? I do know that since I'm wearing compressionstockings (? now wear the thigh high ones, but will change to the hose, as my neuro prescribed) and they're helping me very much in standing. I feel my legs are very light as I wear them and want to walk (it's a pity the rest of my body doesn't want to cooperate ) but I'm glad the standing is better so I can do the dishes etc. standing, since I get a lot of pain in neck and shoulders when I try to do those things while seated. I would really recommend you to wear the stockings or hose because it might work for you. Good luck,

Corina

Hi Karen,

can't help you with the meds but wanted to ask how you know you have low blood volume? Is that something that can be tested? Best wishes for your daughter,

Corina