#itpwarrior

*Immunologist found some stuff that needs futher testing.

*Hematologist working closely with Immunologist to order more testing including CT scans. These test are being sent outside of kaiser because they are so specialized So i don't always get to see them but the Immunologist is been emailing me updates on EACH test.

*Immunologist has now brought geneticist and rheumatologist on board, and I meet these two people next week.

*primary care meeting with me end of May to stay involved and up-to-date

*mental health is already been involved the last 6+ years.

I'm really happy.. feels like an understatement I have been heard And we are investigating my shit immune system!!

🥳🥳

😅For those that want the deets😅

I met with my new Hematologist.

He wanted to go over my ITP history FROM THE BEGINNING! He was shocked how much I had in my head without notes.

I told him what treatments have yielded no platlet responses over the years and how most my drops since 2013 have been immune system triggered or medication triggers (like vaccinations)

He wanted me to take a daily med that stimulates the bone marrow to produce more platlets but these meds have only been out 10 years and were approved as orphan drugs. I have followed these meds the last ten years. I'm not on board with these. MORE SO, I DO NOT have Chronically low numbers. Mine are event drops.

This HOUR long, one on one appointment with him ended with him agreeing that

* I am on top of this

*I manage this condition well

*I can have IVIG infusions when i drop below 20

AND! AND!

since it's tied so to my immune system,

My severe infection history & routine home mitigation, & I respond SO WELL to IVIG w/o roids I am being sent to the immunology department to be checked for IgG Deficiency, CVID & other autoimmune issues. They will follow up with rheumatology should they find anything but both referral sent.

Oh hi auto immune 🙃

Haven't needed IVIG infusion since 2021, and Haven't visted infusion clinic since 2013.

But here I am 4hrs for 2 days in a row.

Because a head cold knocked my platelets down to 19k.

But I win... because i told the hematologist I refuse steroids. 25yrs yo-yo-ing on the fucking things I have damage from them. They called me and decided IVIG was fair because I respond well and rarely crash like this anymore, and it was virus triggered.

If my relationship with my body was a separate physical relationship that gaslights & physically attacks me like it does.. it would look like a toxic domestic violence situation.. and ugly one too

oh you wanna go to the beach this weekend try to pull that off with poor sleep & a fibro flare.

Oh you got a shot to establish immune system to protect us, we are just fine watch this!

+Puts me in hospital with risk of bleeding to death+

But I feel like a boy who cried wolf any more with oh just her immune system\body put her in the hospital feels so casually dismissed as no big deal or somehow my own fault.

It sucks because the like mental health gets dismissed with 'if you'd exercise more' 'eat better' 'get sunshine', you wouldn't tell that advice to a person with a broken leg... yet I'm told those things with autoimmune. When people don't understand.

I know I've become casually dismissive and use humor to cope... I'm also more use to it.

But logically the odds of my immune system WINNING And SUCCESSFULLY taking me out has a good fucking probability. If I wasn't paying full attention to my body and advocating the way I do.... I'd have been dead years ago blindly trusting doctors.

It just hurts sometimes. Because if I'm in the hospital it's probably a bigger deal than it seems. Being I'm use to managing it.. it's heavy.

And honestly it's an abusive relationship I cant leave or give up fighting.

I never know how to deal with the mixed emotions my auto immune issues cause me. The therapist pins the emotion as a guilt I feel. Mourning the plans I had before auto immune robbery happens

I'm sick, because I'm a mother and I wanted to love on my boy, take care of him when he was sick this weekend.

I'm sick therefore my body is waged a war on its self. Casualties >100k platelets and likely have me at a very low count with the spots i see on me and the WBC being so high.

I'm frustrated. Because being in bed causes my Fibromyalgia to flare up, my body hurts, spots go numb from nerves not working, and I cant sleep.

But... how do you recover from a illness.. rest and sleep.. you see this viscous cycle here??

Dr appt. Today lab stabbed me 4 times for simple draw.... never simple with me ever! They hurt worse than normal too. Got a run in. And someone sweet waited up till i got back to wish me goodnight via text. *melt*

This week i got a lot going on. I had a good weekend with the kids all 3 and grandbaby too.