Erika-in-orlando

[juliegee]

OK Erika-

It's been a few days...Anything new? Are you still in the hospital?

Sending prayers & hugs-

Julie

[erikainorlando]

Hi All.

Julie - how sweet of you to think of me. I am sooo tired of being herre. I am still are still in the hospital. They are still trying to get me into Gainsville which is a teaching hospital very good in this area. My neurologist here knows some folks there and is hoping they can help.

I have severe spasms/convulsions on any activity. Then there is usually a hold up in getting me medicine...and I lay there and shake and cry for usually 1/2 hour before they get it...sometimes longer. I try to be patient but you can imagine how awful I feel afterwards (let alone during). I can't walk far...and if I do expend this energy I will not be able to walk at all.

My kids are home for spring break. I am so over all of this....I miss my kids. I miss my life. Why is this so unusual? Why is it so hard to treat?

I'd like to look over my Vandy notes....doc says it says I have POTS but don't know what else to do with me...suggests counseling! They did an MRI and then said that is all the diagnositc tests they can do....??? Isn't there something else we are all missing?

Sorry...didn't mean to wine....just tired of hospital food...missing my kids...and no answers.

Erika

[erikainorlando]

OK, so now Shands doesn't want to accept me "in patient"...after 1 1/2 weeks of waiting. Can't even believe it. So I guess I am discharged from here....back home and then home health will tell them I am too sick to be home and the circle begins again............................

Any smart people out there...I mean I know there are...just need ideas.....................

Thanks,

Erika

[dsdmom]

Erika

So sorry to hear that you are back home. I mean I'm glad you aren't in the hospital but am sorry that you aren't healed

Could you go to the ER at this other hospital and try to be admitted that way? Why wouldn't they take you as an in-patient? Are there any other hospitals near by you could try?

[juliegee]

Honey,

I am beyond frustrated for you! Whatever happened to that appt. with the neurologist that was more familiar with rare diseases that correlated with dysautonomia? I can't believe that they just want to send you home. You can't function and they can't tell you WHY. Grrrrrrr.

I agree with Vandy. Counseling is a great idea- supportive, hand-holding, empathetic counseling to help you deal with the multiple docs whp aren't helping you. This is real, physiological, not psychological.

Stay strong. Stand up for yourself. We all love you and are pulling for you.

Hugs-

Julie

[Noreen]

Erika-

Is it possible you doc would write to NIH rare disease center on your behalf? It's a longshot but at least it might be something.

Here's the link:

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

I think see a counselor is a good idea. Anyone with a chronic illness can benefit from therapy. Heck, anyone with teenagers could use therapy time to vent.

Best wishes and I hope you feel well enough to enjoy Easter.

Noreen

[sue1234]

I know you are so tired of being in hospitals AND so tired to be more ill than you usually are. NIH sounds like a good idea, like the poster said, just getting a doctor to refer you could be a hassle. I can't imagine how hard it is for you right now having so much trouble doing much more than lying in bed. Keep researching online and phoning local doctors to see if you can find ANY possible help. Keep us posted! And, family-wise, just remember you can only do what you can only do--and that's it.

[juliegee]

Any news, Erika? Are you getting anywhere with a DX? Symptoms improving, staying the same, worsening?

Hugs & prayers-

Julie