DePhoMo & They Don't All Float Down Here in General Mental Anesthesia

Dec. 23, 2018, 8:17 a.m.
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Public

Yeah, you heard that correctly, but I’ll let you all Sherlock it out.

So I guess I’ll begin with: Looks like I’ll be starting chemotherapy for ulcerative colitis in January.

I already have my first 4 appointments scheduled. Typically you get the infusion 6x/year but I’m getting about double that!!! I have 4 infusions starting on January 3rd, then the 17th, Feb 14th, the 28th, then every 8 weeks afterwards.

I’m nervous in that the side effects are scary, including severe joint pain, respiratory issues, bronchitis etc… and I already have several blood clots in both lungs & asthma. Back & joint pain… like I don’t already have enough of that, but the most frightening is PML (a brain infection caused by a virus) which I’m a higher risk for because of my severely compromised immune system and that can cause death, permanent severe disabilities with no treatments or cures. The latter is scary to me.

I was told that I’ll be monitored closely during the infusion and that a half hour prior I’ll be given some meds to try and prevent some side effects, migraines, allergic reactions etc… basically a crash cart.

“In as early as 6 weeks, 47% of patients with UC achieved response. At 1 year, 42% of patients with UC achieved remission”. Awesome odds. :/

Obviously I’m hoping all will be fine and hoping that this works, but it’s nerve-wracking reading up on this stuff especially considering how much I’ve gone through, not just with my health, but all the side effects of meds that I’ve been and am still on.

This is happening though and the way I see it; “if” it even works… and gets me into remission (fingers crossed) it gives me just a little more time to raise enough funds to go see my holistic Dr. Dr. Mackey back in South Florida because I know she can get me into and/or maintain remission in a much safer and healthier way. And THAT is what I want more than anything. To get well without side effects!!!

Seeing her is the whole reason the gofundme page was set up and it continues to be my end game. I just need to survive long enough to make it happen. If you haven’t read up on my health, I invite you to visit the following link, if for nothing else than to learn about this disease. As much as I loathe asking, the only way I can get help is to ask others to share the page and ask them to ask others etc… so for the holidays, would you be so kind as to share my gofundme link to your friends, coworkers and various social media pages?

I humbly thank you.

The disease that’s killing me & more

It’s been a particularly rough few days (zero sleep) and today / tonight… No end in sight. It’s after 3am now. I barely eat, I don’t even know where it’s all coming from. Maybe the back brace has something to do with it, wearing it just hurts so much! I thought I was in terrible pain before (and I was) but this takes ‘excruciating’ to a whole other level!!! Exactly when does a person run out of blood?

At least I’m safe from vampires.

I’m running to the bathroom now about 20x/day and some of those times (as mentioned in a recent entry) nothing comes out, it’s just severe pain, cramping and contractions.

I hope everyone is having a better weekend than I am, stay safe out there if you’re driving around.

Thank you to everyone that has contributed towards my health. Be it financially or through conversation/friendship; it really means a lot. Honestly, you don’t even know how much it means; it’s everything! Btw… If you call and I don’t pick up, or respond soon after; it’s because I was physically unable to, no other reason.

DephoMo 22 & 23 (Dear DePhoMo: You don’t have to use everything, just whatever you like). :)

22. ART.**

Art comes in many forms. I can’t draw a straight line using a crayon and ruler, but I am an artist.

A Photographer: (I also conceptualized this piece)