Today is: "GIVING TUESDAY" in General Mental Anesthesia

“I’m ok” is always the biggest lie, same as “I’m fine”. Two inescapable responses when you can’t truthfully answer questions you wish you weren’t asked in the first place; particularly when the person(s) asking are autonomously asking and not seeking realities bitter truth.

I… am not fine.

Sigh… I was kinda hoping this day wouldn’t come.

If you guys remember, my former gastroenterologist had me on a “Prednisone Maintenance Program” meaning that since my body was resistant to all the medications, I couldn’t get off the Prednisone without being hospitalized. I couldn’t live without it. The irony is that it’s also killing me., but the Dr. didn’t know what else to do. he wants me on Remicade (chemo for colitis) but it’s $14,000/month, I know, it’s insane! So, until I can find another way to get well… this is my only option, to stay on Prednisone.

My last lengthy hospital stay was in January of this year. During that two week stay I was treated extremely poorly in the hospital and abused, by two different gastroenterologists. (I can link you to that entry if you want to read it).

I was released in the EXACT same condition I was in the day I was admitted.

My gastroenterologist, was once again going to try and ween me off the Prednisone, but very, very slowly. I was on 40mg daily and was to go down by 5mg every 2 weeks. Upon my release from the hospital, I was given only 3 days of Prednisone! So I called my Dr. He refused to write me a prescription.

But that Dr. stopped writing me the prescription for Prednisone knowing full well that you can’t just stop it suddenly. It was unbelievable! I was forced to find a new Dr. immediately.

I then saw a primary care Dr. who continued the Prednisone, but after a few months also refused to write more since I was still so sick, bleeding etc… I needed to be under the care of a specialist (a gastroenterologist). I didn’t want to do that because of the cost. ($275/visit). But I had no choice.

I found a new gastro, I had to borrow the money to see him. After an examination and reading up on my records, he also continued my Prednisone maintenance care. There were no other options. They’d like me to be on Remicade as well. Even people that I know who have insurance it’s costing $6,000/month! He did offer me a kindness in that he said I could call up once a month to get a refill instead of having to make an appointment which would be very costly.

I was very thankful for that!

In 1998, I nearly lost my life to this disease. Dr’s didn’t know what to do, no meds worked then either and I was on Prednisone for 6 years straight! It wasn’t until my mom forced me to go see a homeopathist that everything changed.

I was not a believer at the time, but in 2 months under her care, I was off the 14 pills (Asacol and Prednisone) that I had been on since I first got colitis in Aug 1992. After about 8 months of care, I was in remission for the 1st time!!!

I hadn’t known what ‘living’ was like for 6 years, it was miraculous, truly! After about a year and a half, I no longer needed homeopathy and was just in remission. This lasted for the better part of 15 years! Until Nov, 2015 when this all started up again.

During my remission years, I did have the occasional ‘flare up’ but I was always able to go back on the homeopathy and get well. This time, things were so severe it didn’t work.

Living paycheck to paycheck, I forced myself to continue working, despite how sick I was or how much pain I was in. Every penny went to bills, car insurance etc… But come June, 2016… I simply couldn’t do it anymore. This led to me flying to North Carolina to be with family because I could no longer care for myself. Every day since has been worse than the previous. Multiple lengthy hospitalizations, medications that don’t work and lot’s and lot’s of Prednisone.

Coming back to now… I tried all day to call my gastro’s office, but the line was busy. So I had to drive there. They said their phones were down. I explained why I was there and she had me wait while she spoke to the Dr. Ok. I waited patiently for an hour. I was told that I need a colonoscopy (but the average cost of that is $3,081. As someone whom not only has ulcerative colitis, but in a flare state for 2 years without the inflammation going down… they are extremely concerned about colon cancer. I’m reminded of it every time I see a Dr, it’s a constant stress factor in my life! She then said: “The Dr will not write you the prescription for Prednisone. “Woah, wait… Are you kidding me? The Dr. didn’t even have the balls to say that to my face, hiding like a coward down the hall. I said: He knows what will happen to me if I just stop suddenly”. She had no response. The Dr. just signed my death warrant.

I didn’t yell, I wasn’t upset… disappointed and surprised, yes.

So… I walked in hopeful and positive, trying so very hard to be positive and now this time tomorrow I will be having Prednisone withdrawals… (which are absolutely fucking excruciating!!!! to put it mildly). I don’t know how long that it will last, that is, unless I have a stroke (which is very possible when you stop Prednisone suddenly (especially if you’ve been on it long term)) which I have. 15 months to be exact! Not to mention my recent heart troubles… things are about to get much, much worse....

If I don’t get to Florida to see Dr. Mackey (the homeopathist who saved my life in 1998) I mean, game over. I don’t mean to sound grim, but this is the reality of my situation. I don’t know if I have days… or months. I’ve tried everything that I could try and every single thing has failed. I’m still in the process of getting disability, but it’s taking forever. and will likely be at least another year. Time is not on my side.

I’m not bleeding consistently right now and some days I go to the bathroom 10x, other days only 4x… If I go to the Emergency room, they will not admit me, I’ll get 1 or maybe 3 days of Prednisone, then this whole thing starts over again.... plus a tremendous bill. I’m not sure how much my body can withstand (both mentally and physically).

As it sits, (I hope she (Dr. Mackey) doesn’t request that I have a colonoscopy because financially that’s well out of reach) but I’m still $450 shy of being able to make that 1st appointment with her.

Yet, I’m trying extremely hard not to think negatively.

Today (November, 28) is “GivingTuesday” #givingtuesday
A recognized global day of giving.

https://www.givingtuesday.org

I’m just hoping for a miracle… and not in the form of prayer, just in everyday generosity.
I read that story about the woman who ran out of gas on the highway exit in PA. A homeless man bought her $20 in gas, she in turn started a GoFundMe campaign sharing that story and has raised in just days… (as of Sunday) $360,000!!! I’m blown away by peoples generosity, it’s amazing and awesome!

A fraction of that would save my life! But without sharing and others sharing and others and so on… I just don’t have a way to make it visible to so many people. That’s the hardship. I lack the publicity. :( But I’m going to be hopeful! Fingers crossed!!!

Thank you for listening, for being here, for caring / sharing and donating. None of your kindness is lost on me. I promise you that!

With respect and love. Thank you!

For “GivingTuesday” please share this link and ask others to share it as well. You can be charitable without reaching for your wallet. Share, and ask others to share. The more eyes this reaches, the better my chances of healing and surviving. It’s all I want for the holidays.

All the best and G-D Bless! - https://www.gofundme.com/jayeeryk