I have been struggling with a few things, and I’ve had a few realizations this year about myself. Isolation kinda does that I suppose.
SO THE FIRST THING
I’m already knee deep in the process of getting myself help in Denver at a clinic there called ACUTE for my ARFID.
Till last year I had no idea I had an eating disorder, nor that there was a name for it, and besides the last seven years, I had actually been struggling with this most of my life. It’s been a bit rough mentally. But I also realized during this time after being diagnosed with colitis, that my current path will kill me if my brain tumor doesn’t. I can’t get surgery at this time due to there being no room in the icu’s because of covid patients, for people like me. Yes, I need surgery two years ago. Yes the tumor is slow-ish-ly killing me. I say that because I’m actually getting worse at an abnormally fast rate for this unorthodox due to the rare accelerated growth. I’ve also reached out to the cancer n to inquire about Avastin chemo treatment that you take daily to stop tumor growth for those of us with NF2. I don’t know if I can do both at the same time, I have no idea especially being on steroids for the colitis.
It’s all so very complicated.
How did I end up here?
Well....I don’t fully understand it, but I know that the path I have been on has ruined my life and stolen everything I ever loved or enjoyed from me. I can’t wake up and live through my days terrified anymore. This is no life....it hasn’t been one. I feel so damn alone.
I’m tired of having to write about how sick I am all the time. But it consumes me. It consumes my days, my hours, my thoughts, my entire existence. I just can’t do it anymore. I am exhausted.
My dr threatened me with a feeding tube. I realized at that moment, I don’t have a choice. I have to do something for myself before it is forced on me.
Second:
Brain surgery. As mentioned above, it just isn’t in the cards while covid cases continue to surge in Cali. That’s where my surgeon is, and as some of you know, he is THE ONLY ONE. So there isn’t much choice here at all.
I’m severely disappointed. But my hands are tied. I realized I need to use this time and fill it with something I can actually control. And that’s getting help. In fact, if I can help resolve some of this issue, it would greatly improve not only my survival chances, but my recovery as well from the brain surgery. Since it probably won’t be my last one, and it certainly isn’t my first, I think this is actually a step in the right direction. Maybe my surgery getting canceled was a blessing and this is a lifeline.
So, hopefully I can resolve the financial aspect of this endeavor quickly and I hope to get myself to Denver by the end of this month and start my 7-10 week inpatient journey at both clinics. Hopefully it won’t require more time. It’s already going to be difficult and hopefully I can make enough pronto get home ASAP.
I’ll still be around but not as much possibly. Would you guys be interested if I shared this process with you all as I go through treatment? I’d be happy to do so if anyone was interested. I know eating disorders can be a sensitive subject to some. I don’t have the typical thing going on. I am literally just afraid to eat anything and now I have convinced myself that 5 foods are the only things I can eat without getting sick. Colitis sucks enough as it is....and everything does make you sick it’s not necessarily false....but avoiding all together is just dangerous. There’s more to it but I don’t really want to get in to it. I’m a mess and I know it.
So yeah, that’s what’s currently going on and a lot of why I’ve kind of retreated back into myself.
but, I could really use friends and emotional support right now
Thanks for reading 💜
@missy @rambo
