Checking In

[Guest guest]

Yes it has been along LONGGGGGggggggggg time since I have posted anything to

this awesome group.... I am so sorry...

First off, welcome to any new comers here, I am glad your here to get help and

support with this lovely disease we all share.... The support here we get is

totally awesome.... We have a great bunch of people who devote many many many

hours to help us all try and find answers and comfort when struggling with

health issues themselves. I want to take this time to APPLAUD our many many

wonderful leaders we have here....

Second, let me introduce/reintroduce myself to you all. My name is and I

am from Iowa. I was diagnosed with neurosarcoid in 1996 and have been doctoring

every since then.. YAHOOOoooooooooo .. what a roller coaster ride it has

been..... I started getting my treatments up in Sioux Falls, South Dakota, but

have since transferred myself up to the Mayo Clinic in Rochester, Minnesota...

Its the best decision I have ever made... They are awesome up there, and seem

to know what they are doing...

Anyways since 1996, I have been diagnosed with many many other health related

diseases. Auto Immune Hepatitis, Lupus, a blood clotting disorder my blood

doesn't clot properly, so I get nose bleeds alot. and there are more, but at

this time I am not remembering them all. Yes I suffer from CRS also... ( CRS

= Can't Remember Stuff)

I am going to be having surgery October 8th up at the Mayo Clinic, I am having a

hysterectomy done, as this bleeding is not fun, and I am 47 years old, and am

not going to use the baby box anymore, so just let's get rid of it..... I am

so totally ready..... I am a bit nervous and scared about having surgery, as

the last surgery I had was my appendix out, and I went into fluid overload, and

I felt like I was drowning in the recovery room..... It was scary, and the

nurses wouldn't really listen to me, they thought I was just getting excited and

worked up. I finally convinced them to get my mother back in with me, and she

got them to jump into action, giving me massive doses of lasix. The fluid did

leave somewhat but I continue to struggle with extra fluid, and swelling in my

feet and ankles all the way up to my hips are swollen... Some days are more

swollen then others....

Oh I must add that I am a LPN, and worked in a nursing home. I had to quit

being a nurse due to this disease, and that was an awful time giving up my

career that I totally loved.... We could all write a book on the loses we have

had to endure because of this disease..

As of late, I am volunteering at our local Domestic Abuse shelter, and have just

recently been hired back on staff working 24 hours / week.. It gives me

something to do, and a reason to get out of the house.... I am on disability,

and that bites too.....

I have tons of questions I want to ask, but will write another post here soon

with them in...

Again welcome and I am sorry for being MIA for so long....

I do have a facebook account if you do just let me know...

Take care,

from Iowa...