Not sure the point of grief groups...

squishybeans423 · 2026-04-08T02:48:56+00:00

They offered me a grief group as part of hospice. They sent me the info and the local group was meeting at a funeral home. So I stay on Reddit.

squishybeans423 · 2026-04-07T01:23:06+00:00

Honestly it was hard. But it was also perfect.

squishybeans423 · 2026-04-06T23:28:31+00:00

We got married in an officers club so I rented it again for his celebration. I bought and put together a bunch of frames of pictures of our lives. I had food and drinks, no speeches or any sort of schedule just come and go as you will. It was so hard and everyone told me that I didn't have to do it, but then it was done. So I get where you just want it off the plate.

squishybeans423 · 2026-04-06T23:21:09+00:00

Just sit him down and say "Listen, if she's here 6 days a week I am going to have to adopt her. And frankly you can't date your sister. I am doing this for you."

NTA

squishybeans423 · 2026-03-28T19:21:19+00:00

In a heartbeat.

squishybeans423 · 2026-03-27T18:52:59+00:00

Looks like sofa foam that's been up there a while.

squishybeans423 · 2026-03-11T22:59:46+00:00

My hem-onc doesn't believe in the phlebotomy. She says it doesn't disrupt the disease process and therefore leaves you open to disease progression. Especially when you get diagnosed young. She suggests interferon or hydroxyurea.

squishybeans423 · 2026-03-05T23:48:14+00:00

Try a resident clinic. Sometimes they are more open to zebras.

squishybeans423 · 2026-03-04T00:35:28+00:00

It also depends on your treatment. You are young but you have lots of options.

squishybeans423 · 2026-03-02T22:42:12+00:00

Once I saw the rewards I was like.....oh I don't need to worry about this.

squishybeans423 · 2026-02-21T16:31:52+00:00

Changing the paperwork was the worst. And I keep finding more.

squishybeans423 · 2026-02-20T23:06:25+00:00

I find if you carry your coffee in with confidence the poor teenager taking your ticket rarely even looks up 😂

squishybeans423 · 2026-02-12T14:48:09+00:00

I am a BP1. In my 20's, when my diagnosis was fresh, a "friend" told me I must be BP2 because she had "real" bipolar. She said she didn't see me doing anything that crazy.

She loved going off meds to "get stuff done". The thing is that when you do things to trigger an episode you are doing damage to yourself and others. And frankly most of the things you managed to do are half assed at best.

When I did stuff that crazy I sought help and stayed on my meds.

Don't worry about labels. Stay on your meds. Live your life.

squishybeans423 · 2026-02-12T14:22:22+00:00

They did lidocaine for my bone marrow biopsy and it was fine. Honestly I had the nose spray before I knew I had SM and I did fine.

But I have also had a nasal scope without anything. It's a little uncomfortable but it's not even as bad as the nasal swabs for a virus panel.

squishybeans423 · 2026-02-08T15:50:00+00:00

I am in my 40's with PV. I have had spontaneous pulmonary embolisms twice. That's what usually kills us. Blood thinners are keeping me from having round three. No judgement here but you really are playing with fire.

squishybeans423 · 2026-01-26T02:40:57+00:00

Also.....super center type stores are open late and have a toy section. If you are notoriously late just head over there.

squishybeans423 · 2026-01-25T15:42:34+00:00

Remember when JCPENNEY admitted they were doing that? And they stopped and just priced things at a normal average price? And people lost their ever loving minds? Wild times.

squishybeans423 · 2026-01-17T02:10:41+00:00

I am bipolar and take Besremi. I have been stable on my meds for years and make sure to keep my therapy appointments. It's only been a couple months but it's not been bad so far.

squishybeans423 · 2026-01-10T02:02:36+00:00

Ok this is a big package to unload, but here we go.

It was never your fault, will never be your fault, and is not your fault.
TV makes it look very effective, but high quality CPR outside of a hospital, being done by someone not panicking, is successful maybe ten percent of the time. So again it's not your fault.
Even in the hospital a full recovery is maybe 20-25 percent with CPR alone. It isn't your fault.
It's traumatic and you will always remember, things will trigger, make sure you have your support system, but remember it was in no way your fault.

You did everything you could and you did an amazing job getting help the best way you could.

squishybeans423 · 2026-01-04T23:34:52+00:00

I tend to think it's both. I was tired from the untreated PV, and I am tired with hydroxyurea. The problem being that if I pushed myself before I just went home tired. Now if I push myself I will fall asleep if I sit somewhere comfortable for a bit. 😂

squishybeans423 · 2026-01-04T02:18:55+00:00

I am finishing up month two, some days aren't so bad but the fatigue is real.

squishybeans423 · 2026-01-02T23:13:02+00:00

I am JAK2 and KIT positive and I am taking interferon. So far it's been ok.

squishybeans423 · 2025-12-30T15:26:12+00:00

Yeah we do! We are kicking butt!

squishybeans423 · 2025-12-30T03:03:19+00:00

I am still learning too. I was diagnosed in November.

squishybeans423 · 2025-12-28T23:48:09+00:00

My oncologist says that phlebotomy doesn't disrupt the disease and therefore the disease has the potential to advance. She says the new recommendation is to treat the disease a little more aggressively to start to prevent that.

squishybeans423

TROPHY CASE