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how are you guys doing???


corina
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hi guys,

i just wondered how you guys are doing. i have tried to keep reading here but as i'm not too well, i have trouble keeping well informed about all of you.

i missed a lot of names lately (and haven't been writing much myself) so i wondered how you all are. my latest news is that i still haven't heard from the rehab centre if they will take me or not (they should have called me 10 days ago) but because i had a bad cold i wasn't able to call them myself. so i will try again tomorrow. oh, i hate these things!!!

so, does anyone want to share her/his latest news??? are you still fighting the doctors??? :lol:

corina

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Hi Corina!

I'm so glad that you've posted - I had been wondering how you were doing as you've not been around as much lately! I just wanted to say hi, and that I was thinking of you and sending you good thoughts on your rehab situation. :lol: Laura

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Hi Corina. I've missed seeing you around and am glad you posted.

I had an appointment with a headache specialist for next week--but they called to cancel as the doctor will be away :lol: The only good thing is that I'm using the day off to get my car repaired. They still haven't given me a new appointment yet, and I've had a migraine since Jan 12, even after a medrol dose pack.

I hope you get good news about your evaluation! Nina

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Corina..its good to see you on here!! so sorry that you arent feeling well.. and had cold to boot! that really is not cool :).. I hope that things get moving for you w/rehab.. hang in there dear!

hugs

dizzygirl

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Hi Corina!

So happy to see your name pop up. I've been mostly lurking as opposed to posting. Things have been busy here, life happens even to people with chronic illnesses.

They're treating my myasthenia gravis much more aggresively now, but it will take some time for the medication to take effect. Recovering from pneumonia right now. The joys of immune supressants! I'm also on steroids which are making me more POTSy, but as long as I'm able to hold down my food and walk around without blacking out, I won't complain. Talking myself through the tachy episodes. And taking tons of mestinon--cold no more :)

Hope everything works out good for you and your family with the rehab center.

Good night!

Ariella

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thanks a lot for all your well wishes and sharing your own struggles! it always tells me that i'm not alone and makes me feel so connected to all of you!!!!

i've been calling the rehab center today to ask how things are going and they told me that my case isn't talked through with the doctors yet and that i'll probably be invited to have a talk with the doctors again. i asked what that would be good for as i already talked to seveal people and did a psycholigical test but they told me that the doctors are the ones to decide and since dysautonomia is sooo unknown they have to find out if they will take responsibility. i told them that that's one of my problems: no doctor wants to take responsibility for my case and then they just turn me down instead of try to help me (except for my familydoc and pt who can't help me but always want to try).

they will call me back on thursday, i think that's to keep me nervous ;)

nina, i really hope you will get an appointment with the migraine specialist soon!

and laura, wanted to say hi to you to, hope you're doing okay!

morgan, i don't care how you spell my name, i'm just glad to hear from you and your family!

ariella, i really hope you will recover quickly from the pneumonia. i've had one some years ago and it really made me very sick!

and dizzy, seems that you have a lot of problems lately, hope you feel better now!

warm wishes everybody,

corina :)

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hi katherine,

boy, this forum is sooo cool! it's almost as if we're chatting in real you know!

i was thinking about you too and how your little girl is doing and how you're managing with work and everything.

oh and i saw your latest pictures on the photo section, they're lovely!!!

corina ;)

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Hi corina--hope you had a good day today. Thanks for your reply. It is really nice to be able to chat!

My little girl is doing very well. Recently she has learned to write the first two letters in her name--and we are starting to play the violin. She can't make any tune yet, but she can hold the instrument and get a sound with the bow! She is looking forward to a trip this weekend to see Disney Princesses on Ice with her grandmother--an ice skating show with all the classic Disney princess characters--Cinderella, etc. This past Sunday we had a wonderful morning together at Assateague--and saw lots of wild horses!

I am doing fine--I still have episodes or days with challenging POTS symptoms--but usually I will feel a lot better after a short time, and an increase in fluids/salt--or just some rest. Work is going fine, I am working 3 to 4 days a week generally. Fortunately a lot of my work I do sitting down. But I do force myself to walk as much as possible and take the stairs during the day.

How are your children doing? What is the weather like these days -- and can you get outside at all?

Please let us know how things are going with the rehab centre.

Katherine :)

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Hi Corina, let's us know how you make out tomorrow (technically today). Goodluck

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katherine,

it's so cool that giuliana is able to write the first two letters of her name!!! especially because she has such a beautiful but difficult to write name!!!!! did the two of you enjoy the ice show?

my boys are doing great. they're both in highschool now (one is in his third year and one in his first) and they're doing very well. our oldest son is invited by his best friends'parents to join them on a ski trip this coming vacation so on friday night they are travelling to the french alpes (which is about 12 to 14 hours drive from here) and i'm sure he will have a great time. so it will be justin and me at home (and my husband working), but i'll make sure that he will have fun things to do as well. i thought of asking a friend to come stay with us for some days. they could go swimming, watch films and do all kind of boys things!!

jacquie,

the rehab center still hasn't decided if they can take me. i've been calling them yesterday (as they didn't call me back AGAIN) and told them that i want an answer this thursday (and they better don't say NO :):lol: )

corina

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Hi,

I havent been around much til lately. I have been in a pots hole for about 6 months. I give up on trying to get diagnosed for every symptom that pops up. I am so tired of doctors and medicines. I seem to have things under control, to a point that is acceptable to me. I have been doing some serious soul searching since I have so much time on my hands and cant do much.

I am only seeing my cardiologist and my internist. My husband is becoming more amazing as time passes. I feel very lucky to have him.

I hope your doing well, good to hear from you.

Janine

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hi janine, it's nice to hear from you. like you, i've given up on chasing doctors and finding answers. the only thing i'm looking for right now is help :( .

and guys,

well, i have been called today that the man who is "doing" my case at the rehab is sick (again, he was sick some weeks ago as well as they told me). the woman on the phone said that the man would call me back when he will come back at work. i asked if they expect him to be sick for a long time but she didn't know.

i think that they have decided on my case and that it's a no and the man has to tell me because he is in charge. i think the secretary could have told me if it's a yes and tell me that the man would call me back with more details as soon as he's back at work.

i'm not sure of course, but i will wait until next week wednesday or thursday and if i haven't heard by then i will call them and tell them i need an answer right away.

it is so difficult as this seems to be my only option left to get some better and i really don't know what on earth to do when they don't want me. but i know i still haven't heard a definite no so i will stay hopeful, although it is very very difficult.

so you see morgan, we really are champions in being patient and wait, wait, wait until someone wants to help us . . .

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Interesting isn't it, how they want your information yesterday and you can get your reply in an eternity.

I too have given up on doctors and cures and really big specific answers, but I am comfortable with my decision. I just want to be able to do my ADL's for goodness sake....notwaitingforanythingmorgan

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Corina

I will be hoping that this works out. They haven't said "no"--so that is reason to hope still. Is your doctor helping to advocate for you? You have the patience of a saint.

We did enjoy the ice show--Giuliana pretended to ice skate for THREE hours after the show in her uncle's kitchen. That evening Baltimore got hit by the major snow storm and we enjoyed the 14-inch (35 cm) snow the next day.

Did your son enjoy his trip to the alps? Did Justin enjoy his weekend too?

I hope this rehab will work out, and if not, that there will be another option for intensive physical therapy for you.

Take care,

Katherine

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