Time Moves Slow In Hell in General Mental Anesthesia

I know it’s been a while, my health has taken yet another turn for the worse.

Ever since everything fell apart at the last minute 2 months ago in an effort to see a holistic Dr. in regards to my ulcerative colitis which is out of control… all I’ve been able to do is maintain where I am health-wise until I can make that appointment again.

Of course I can’t make that appointment without money and I just barely had enough last time. Two months have gone by, I’ve had to see my Primary care Dr. who will no longer write me a prescription for Prednisone (the only medication currently keeping me alive). She is making me go see a new gastroenterologist (which is expensive!).

When I called to make the appointment, I was under the impression that the cost might be $150 which is what my primary care thought it would be. I could just cover that. But when I called, I found out that it was… $250/visit expensive!

I couldn’t afford it. My mom g-d love her (living off of social security checks) after a major stroke said she could give me the balance, but not until she receives her check, that was a few weeks away, but I didn’t have enough prednisone to last that long.

When I called to make the appointment, I couldn’t get in right away so I was going to be without prednisone for a few days. This means a risk of stroke, and definite withdrawal symptoms. If you have never gone from a full dose to zero without tapering off (which allows your adrenal glands to start working again) you feel like you were run over by an 18 wheeler. Everything hurts,, and I mean everything!!! Bones, muscles, hair follicles… vision blurs, speech blurs, confusion, disorientation…

Let’s just say, I was in bad way.

I finally got into see the Dr. late this afternoon

This gastroenterologist expressed concerns about keeping me on Prednisone because of how dangerous it is, especially considering that I’ve fluctuated anywhere between my average of 40mg/per day to as much as 250mg while in the hospital to my conditioning worsening every single time they try to wean me off of it. I am completely dependent on it and although he too wants me on chemo (Remicade) at $14,000 a month, it’s impossible. Even if I had insurance it’d still cost well north of $6k/month so where does that leave me?

I have no other option but to maintain 40mg of Prednisone until I can see Dr. Mackey (my holistic Dr.) Somehow I have to raise the funds. I’ve already liquidated my life, lost my home, my car, my furniture and two camera lenses just trying to survive and pay these bills over the past year.

I’ve been hospitalized 5x over the past year. Today my blood pressure (which is normally perfect) was 167/110. Likely elevated because of the pain I’m in, but this is very high. And (as expected) the cost of the Prednisone has nearly tripled as well.

The Dr. didn’t like how swollen my hands, fingers and face were. I showed up limping because of the joint pain the prednisone is causing, dark bags under my eyes because of my inability to sleep, I still have bruises from IV’s that I had in January because the prednisone slows healing.

He did say that he wants me back on Lialda, but at $1400/month I can’t afford that either, however, he was able to provide me a good amount of samples, so there’s that. It’s minimally effective at best, but with the full dose of prednisone, even 1% better is better than nothing.

The 31 pills I take each morning (not including (afternoon/night meds) plus anything I might need to take for my back or the probiotics which are refrigerated). What did you have for breakfast?

August 23rd was the 25th anniversary of me getting ulcerative colitis. A lot of shit has been running through my head, a lot of stress and anxiety. I don’t post personal information to my fb, but I felt compelled to, namely because it was recently brought to my attention that many of my friends and business associates back in South Florida didn’t know I left. (I didn’t say anything). I thought I was only going to be gone a couple weeks, not over a year and have my entire life collapse in the process.

So I made a post and explained a little about what was happening. Although it was mentioned to me on here (PB) to do a crowdfund campaign… for moral issues I wasn’t comfortable doing that for myself. Additionally, I don’t have a huge social media reach and that’s extremely important if you want a successful campaign, the page has to be shared and revisited over and over again, but I also didn’t know anyone that could do such a thing on my behalf. I’ve always taken care of myself… I survived 4+ (non-consecutive) years of homelessness. I never put my hand out, never asked for anything from anyone. I survived on my own, I worked, busted my butt and did everything on my own. It’s very difficult for me to admit that I can’t help myself. Over the past year I’ve lost everything and that was because I tried to help myself with the hopes that my health would improve, but my body has resisted all the medications the Dr’s have given as it historically has. Now I have nothing and my health continues to fail.

An online friend of mine that I’ve only known for a few months (who also has colitis) read my post and without me knowing took it upon herself to create a gofundme page. because as she put it, she knows what it’s like to suffer as I am. She has lost family to this illness and took my post intimately and seriously. It’s like a punch in the gut for me to share this page, but I promised her that I would so more eyes could see it and hopefully people will share the page with their contacts and their contacts will share it and so on.

Ulcerative Colitis GoFundMe Page

I noticed that a lot of those gofundme pages are to help (not only with paying for procedures, medicines etc… like me, but a lot are to help pay for bills, medical bills particularly.

I don’t even care about that. I’ve paid several thousand dollars out of pocket, by selling my belongings (some of which as you know were very important to me) and all this after I lost my apartment and car etc… Yet, in the past 11 months, due to the many hospitalizations I’m in debt almost $40,000! And I don’t care!!! I don’t even want help for that! I just want to get well, so I can get back to work and pay my own debts. And please don’t confuse that with pride, that really isn’t the case here. I would sooner repurchase the lenses I had to sell, so that I could earn a living using them than to put that money toward paying a hospital that abused me this past January. My health is more important than my debts; it’s about prioritizing more than anything.

To my regulars, I will try to read up on you guys over the next few days. This post alone has taken all night to write, just everything hurts and there’s brain fog and a lot of crap I’m dealing with; a severe lack of sleep, but the meds over the next couple of days should help with some of that.

When I left the Dr.’s office (now, yesterday evening) this was staring me in the face.

Last updated November 27, 2018