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Boy Have I missed you

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Hello all,

Finally have a working computer and am able to get to it. Boy have I needed you. I really didn't realize how much you helped me until I was without you for 5 months. It's been an awful fiv emonths. I wish I could say that things were better but they are worse. In the past few months the problems with the blood clots have gotten worse. the have placed an IVC filter in my abdomen to block the clots from my lungs and just put in 5 stents in my left leg to open blood flow. Still can't find a reason for the clotting... it's a mystery. This has really limited my mobility. I'm in so much pain in my legs. The wheelchair helps when we go out.

The POTS is just uncontrollable. I just got back from cleveland yesterday. We have exhausted our medication options, so they are just pushing them harder. I don't know how much more Effexor I can take before I blow up.. ya know. The dizzy doctor says that I have suffered somekind of partial paralysis during surgery and my C1 in my neck is completely rotated. Six Discs in my back are sprained. I am seeing a PT to help bring back the feeling in my hands and hearing etc. It sounds like lots of POTS patients experience problems with the C1... hand numbness running into walls, lip tingling... if so DON"T ignore it, You're not going crazy after all.

It's just been one thing after another lately. So depressing and having such a hard time dealing with all of this. But I am so greatful I can get to you now because I need it. I'm filing for SSD for that alone has been so stressful. It makes me want to cry because I just don't want to do it. I'm to young. I know that my bad days far out weight my good, and I would never be reliable but I hate the thought that being here could be final.

Well I am glad to be back. I see alot of new screen names.. hope to help you soon.

My thoughts are with you

Missed you


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Hi! Hang in there! I'm glad you have been able to get your computer and log back on. Sounds like you are going through more than your fair share of problems!!

I understand what you are saying when you talk about the Social Security Disability stuff...it is a nightmare going through it.

I have been unable to work for 14 months now and I miss it so bad BUT then there are many days where even though I miss it I know I couldn't do it.

Hope you start feeling better soon!

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hi mindy -

you don't know me as i just started posting on board in april, but i'm definitely not new to the POTS/NCS/dysautonomia world, & have had cervical spine problems too (i have a fusion now). i just wanted to say "welcome back" and give you a virtual hug. i don't know how i managed without the others that "get it" on the board before i joined...and i held out a long time!

i too am going through the SSDI process, somewhat against my will...my LTD company is "making me" even though i'm still holding out hope that i'll be better sooner than is probably practicable. i know that i spent over 12 hours on the online application & didn't even feel that i was putting my all into it. and then i still had to go the office with my birth certificate & to sign releases (there was no way i was mailing them my original birth certificate & trusting them to mail it back!...and my printer was on the fritz so 29 copies of releases were not happenning). it's definitely hard to be applying when i feel i'm too young to be doing so (i'm 25) & not wanting to be needing it.

so...i'm glad you're back & look forward to getting to know you. hang in there & look around the recent posts...there have actually been quite a few on LTD & SSDI issues over the past month or so.


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I have been wondering where you've been and how you've been faring. I am sorry you have been through so much with so few answers. I hope the SSDI application process goes smoothly for you. Hopefully it is not permanent. Don't give up hope.

Thanks for getting back on DINET and letting us know how you are.

Katherine (your many times removed cousin!)

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I am so sorry you are dealing with all of this. How scary and uncomfortable it all must be. To not know why is even worse. I hate that part of my illness -- having all the tests come back "normal" but yet I am not normal whatsoever.

I will be thinking of you in hopes that you improve and get back to living like you want to live. It is so unfair to have such a difficult time at a young age. I encourage you to see a therapist to talk things out if you don't feel you have a good support system to vent to. Of course, we are all here too!


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