Old member oneup (julia) from the original forum

Things have changed so much I am struggling to understand this new forum. Man I go away for a few years and the site has changed so much I don't recognize anything! Anyway popped back in to see what is going on here. Guess i'll just keep reading and see what I can find and try and join in.

History for those who don't know me:

Diagnosed ITP (many moons ago)
Lowest count 0
Highest count 145 (something like that)
Treatments used: Pred, IVIG, Winrho/Rhogam, Chemo (can't remember drug name), Rituxan/Rituximab
Remission after Rituxan double blinded drug study (luckily got the real thing)


PS: If the Sandi that is in charge is the original Sandi! Howdy long time no chat!!!

OMG how in the heck are you! Yes, it's me, the original Sandi. i love it when old members pop up!

Are you still in remission?

yes I still maybe in remission according to the doctor. Last count I had done was like 127 no signs or symptoms so I don't get tested. That said couple weeks needed to go to a urgent care the doctor there was pushing for me to do one! reminded him I was there for another reason! I got what I came for and didn't get a count done!

Can't remember if you knew but I went back to school. I finally finished became a Registered Practical Nurse and I now work full time nights in a retirement home.

That's right, I do remember that you went back to school. Good for you! How's your daughter?

Daughter is in debt up to her ears! lol After 2 yrs of college 3 years of university and than 1 year of college she'll be in debt till old age! After all her education she works in a clothing store lives 2 hrs away and on occasion comes home to visit her mom!

She was sick a while ago was at an emergency troubles with her stomach/ intestines. Anyways caused some bleeding so she asked the doctor to run a CBC to check platelets. He said why bother no need than she informed him about me. She said within minutes the lab was there taking her blood! lol

Best news of all in all the years doctors have check either of my kids there numbers have been normal. I'm so glad for that don't think I could watch them have to go through the treatments and stuff!

Hard to believe but when my ITP journey started when my kids young in grade school. This year my daughter turns 26 and my son turns 23 this year! They grow up so fast!



Now if I remember correctly and I may not memory is crappy! didn't you have a daughter? How have you been doing is this site paying you yet?


To this day I still tell people about this site and how it helped me in the begining of my journey. You and Audi were the reason I didn't get the splenectomy and qualified for the Rituxin study later on. You guys never told me what to do but pointed out that there were options and got me researching.

Julia:

I have two daughters and a son. They were young too when all of this started for me....not so young now. My oldest daughter is an investigator in DC. My second daughter is engaged and is an anesthesia tech in a Pittsburgh Hospital, but is going to nursing school in the fall. My son was in college, but quit six courses short of his degree. He works at UPS right now.

I know what you mean about the kids ending up with autoimmune disorders. My second daughter has Graves Disease and really struggles. She has so many issues and is always getting tested for things. She was recently tested for Lupus but so far, her blood work is good. She has as many 'ologists' as I do. Endocrinologist, Neurologist, Rheumtologist, Gynecologist, Cardiologist, Ophthalmologist, etc. It just kills me....she's too young. But she's a trooper and keeps plugging on.

As for me, Lupus finally won. Between symptoms and medications, I finally had to quit my job six months ago. Now I am focusing on my photography and am going to enter some gallery exhibits in the next few months. I am also really working on a lifestyle change diet - no gluten and no night shades. It takes a lot of work for that. I'm also trying to organize my house after 8 years of neglect; that is a work in progress.

I'm glad the PDSA helped you. That's why we are here and I hope it makes a difference for people. SO many have come and gone over the years and I like to think that if we even helped a handful, it's worth it. Strictly volunteer, but after Gary nominated me, I did put my hand up.

Hey Julia, hi! Great to hear from you.

Congrats on becoming an RPN!

Glad to hear you're still in remission.

Hello Cindy

Sandi sorry about your daughter graves disease Yuck!

Sorry about the job but glad to hear about the photography and gallery exhibits!

I've done the give up a job before for medical reasons it suck but each time a new door opens. That is why I went back to school there were to many risks in my old job. As it stands now I work 4 shifts a week which is considered full time at my work. Not sure how long i'll be able to keep it up I am hoping long enough to pay off my school debt that way I can cut back maybe 1 shift a week and not be strapped for money!