The Absenteeism of Me & Regularity in General Mental Anesthesia

Spring has sprung despite the power of a nice macro lens.

I’m hoping this posts in the appropriate area, I’m sort of new to Prosebox, having not found a permanent online writing home since Open Diary. As a warning, this is an altruistic tale of tragedy; just something I need to get off my chest, so please allow me to belabor the insurmountable pile of muck I’m sorting through.

I work in the film / video industry, I love what I do, it’s what I’m passionate about. That said, I haven’t been able to work since I finished editing my last project in June 2016; it’s also why I haven’t written since then (not that anyone here is aware). A catastrophic series of events has befallen me.

June 2016 — I came down with bronchitis, went to the Dr. was given a medication (antibiotics) which I ended up being allergic to that landed me in the hospital with bronchial pneumonia a few days later. I was then given more antibiotics and a narcotic, but as I lived alone and needed to work (living paycheck to paycheck) I wouldn’t take that medicine because I couldn’t drive on it and had to take it throughout the day. I had no family locally, so my mom said to come up to North Carolina from South Florida for a couple of weeks just to regain my health, I agreed.

A few days passed, I was feeling a tinge better and went out to the patio to get some fresh air. The medication made me dizzy and drowsy, and I had a coughing spasm which led me to fall down the stairs. I tried to catch myself and my chest hit the post at the bottom. I spent the next week in tremendous pain, but neglected seeing a Dr. because I have no health insurance. Eventually, I was forced to see a Dr. as the pain increased; I had broken ribs before, but this felt like my ribs were dust. X-rays were negative, but an MRI revealed that I tore cartilage on two ribs from my sternum to the left side (would have been better had I broke them). This meant that I couldn’t fly back to Florida as soon as I planned.

July 2016 — A month into this recovery I started getting sick (stomach pain) abnormally bad and I suffer with ulcerative colitis, (so I’m very familiar with “abnormally bad” this was different however. You guessed it, I had to go to the Dr. and was diagnosed as having a parasite “Giardia” (from tap water). They gave me another antibiotic for that.

August 2016 — As I improved from the parasite with my ribs finally starting to heal, I had to get back to Florida. I hardly had any money in savings, but I was using it to pay the rent in an apartment I hadn’t lived in for almost 2 months.

That’s when things really took a turn for the worse. As stated above, I have ulcerative colitis, but had been in remission for 17 years thanks to holistic medicines. Now, however I started to get sick, and this time it was a colitis flare. (I’ll write a separate entry on the subject). I’ve had a few flare ups while in remission and I’ve always been able to right the ship with a couple months of herbs (slippery elm, boswellia, licorice root, marshmallow root etc…). Not this time. It was the worst flare up since I was first diagnosed with uc back in August of 1992. With my elevated risk of colon cancer, I had to find a gastroenterologist.

September 2016 — The day of my appointment, I walk up to the front door; an elderly woman was approaching so I held the door open for her, but I was so weak from blood loss I fell down a slope about 8 - 10 feet and into a bush. The nurses rushed over and helped me up and into a wheelchair. The Dr. wouldn’t even see me instead he called ahead and sent me directly to the hospital. I was in the hospital for 5 days.

Wrapped in wires while in the hospital.

Colonoscopy showed a severe flare throughout my entire large intestine, but no colon cancer which of course is great news. They let me go home once my bathroom visits went from about 12–15 times a day to 4–5 so I was given Prednisone and Lialda and sent home.

Speaking of home… I was now broke. I couldn’t afford my apartment in Florida, haven’t been able to work and exhausted any savings I managed to hold onto. Lialda is $1400/mo and Prednisone is a very dangerous medication that is only meant for short term use (generally 6 weeks or less and often at a 20mg dose).

November 2016 — I was taking 40mg, and when I had to wean off of it (which is a necessity) I just got worse, so the Dr. put me back on it at full dose, but it was too late. I had to be hospitalized once more. This time I also had C-diff which increased my stay to 8 days this time.

3 IV’s and blood work… ugh.

Once again, the Dr. put me back up to 40mg of Prednisone and more Lialda.

He wants me to start Remicade, (chemo for colitis / crohn’s disease) but without insurance, it’s $14,000/mo, another option, Humira is $11,000/mo, but he feels that Remicade is the best option for me. Either way, it’s impossible. Plus now I was taking Vancomycin to treat the c-diff. Another nasty medication.

Vancomycin

In fact, I’ve spoken to a few people who have insurance and still pay $6,000+ / month for the above mentioned treatments. How can anyone not wealthy ever expect to get well?

December 2016 — I lost my home in Florida and the majority of my belongings, bed, furniture, tv etc…

I had a friend taking care of my car (which has $218k miles on it — we do a lot of driving in the film industry). Of course now my registration had expired and he couldn’t keep it at his apartment. It was either lose my only vehicle or borrow money to get it shipped to NC. As it was, I was already getting financial assistance from my mother who was recovering from a major stroke and living off of Social Security… I’m supposed to be taking care of her! Imagine how this makes me feel. Reluctantly, I borrowed money to get my car shipped.

Naturally, the same treatment of the colitis rendered the same results…. (and I’d like to mention that in 2+ decades… the treatment for this disease hasn’t changed at all. These meds didn’t work from 1992–1998 (Asacol / Lialda etc…) which led me to find a holistic Dr.).

A nursed messed up one of my IV’s.... I have really bad luck with these things!

January 2017 — Hospitalized… again with c-diff and this time for 2 weeks! It was apparent that Dr’s just couldn’t help me; my condition kept worsening, they had no idea what to do. At one point they had me on 250mg of Prednisone / day, and here’s what I mean when I say “they”.
This IV only lasted 45 minutes as it swelled and bruised my arm severely.

My gastroenterologist works with half a dozen other Dr’s and they all do rounds at the same hospital that I was in repeatedly. Managing stress with this disease is extremely important, yet every time a Dr. came into see me, they all said something different, managed my meds differently, it was very confusing and traumatic to my mind and body. One Dr even insulted me. A week into my stay, he walks in, leans over me (gets right in my face) and says: “There’s a rumor going around that you don’t want to leave. What do you think about that?” He wasn’t smiling when he said it, in fact quite serious. I don’t know if he was joking or what, but had I the strength, I would have punched him in the face. That really hurt; does he honestly think that I want to go to the bathroom 20x/day? That I enjoy being in excruciating pain, not getting any sleep, have needles stabbing me everywhere, my hands, my arms, my stomach… is this a good time for me???

I was actually insulted a 2nd time. Two weeks into my stay, I was still going to the bathroom over 12x / day. When one of the gastroenterologists came in, she said she was going to send me home. I asked her: “As sick as I am?” She then said the most idiotic thing I’ve ever heard a Dr. say. She asked me how many times I went to the bathroom that day, I told her, she then asked if I can prove it. Are you fucking kidding me? The nurses are very busy at this hospital (not to mention understaffed) I’m on a floor full of patients suffering just like me and you want me to not flush the toilet after I go? Then you expect me to stand there without wiping so a nurse can look at the toilet? Or… do you want me (with c-diff especially) to throw the toilet paper in the waste basket? And often I have to go again minutes later. So if a nurse doesn’t immediately respond to me, she can’t keep an accurate count and I still can’t clean up properly? Yet you want me to call a nurse in every time to look? Any of my nurses would have called her an idiot just for saying that.

(For those of you unfamiliar with c-diff and without me explaining it, let me just say that all nurses, Dr’s and visitors alike have to wear mandatory gowns, gloves and masks upon entering your room as if you have leprosy). C-Diff also kills 30,000 people a year within 30 days of contracting it.

She then released me to my nurses surprise. I was leaving the hospital in the exact same condition I was in when I arrived. (such as the case when you have no health insurance).

My original gastroenterologist had a very specific plan regarding my weaning off of Prednisone. Because I kept getting sick, this time he said to do it very slowly, go down by 5mg every 2 weeks until I was off. By now I was suffering with very serious side-effects of being on this medication for so long (Particularly, excruciating joint pains) but the level of idiocy and lack of care by my Dr’s knows no bounds as I was released with only 1 week of Prednisone. I then called my Dr. and believe it or not, he refused to write me a prescription for Prednisone (even though he knew I couldn’t just stop it). He had officially given up on me.

I was then forced to go see a Primary care Dr. who filled the script. And also recommended I take a better probiotic. Vsl #3 A specific probiotic for ulcerative colitis. (Of course I need to take 4/day and it’s $56/bottle, I can and do get it $10 cheaper through blinkhealth.com I suggest you check them out for your prescriptions. Using this link will also save me a few dollars for referring you. additionally on your first use…

May 2017 — To bring you guys up to speed, I’m not on Lialda (can’t afford it). I’ve been reducing the Prednisone by 5mg every two weeks, but started getting worse when I hit 25mg, by the time I was down to 10mg, I knew I needed to be hospitalized again; I was bleeding a lot, and constantly in the bathroom and in pain, but I refuse to go in, not wanting to be treated like a piece of garbage or to continue this ridiculous cycle.

As part of the money I borrowed I’ve been getting over the counter herbs to try and do something positive… I take over 50 pills/day, I don’t know how much worse off I’d be without taking them; so far it has been keeping me out of the hospital (barely) but it’s still not enough. It’s not the potency or same treatment I’d get through a professional holistic / naturopath and there have been a couple of times where I should have gone back to the Emergency Room but I won’t go because I know they’ll hospitalize me and everything will just start over again!

I went back to my primary care who refilled my prescription of Prednisone, I so desperately need to get off of this shit, but I also need to be on a higher dose to hopefully stave off another hospitalization. I’m teetering on a razors edge right now.

Some of these herbs include Omega 3, Vitamins A & D, Slippery Elm, Marshmallow Root, Turmeric, Bosweillia, Psyllium Seed, Myrh Gum, Licorice Root, Goldenseal, Echinecea, Bromelain & more…

I can’t see my holistic Dr. because she’s back in Florida. She’s also a Dr, so technically she can’t treat me without having physically seen me within 3 years (legally). I know… (I have all the confidence in the world) that she can help me, but I can’t afford to travel. Pay for the flight, a rental car, hotel (because in my condition I need my own dedicated bathroom) plus money to see her and pay for treatment. Sure, it’s a far cry less than what a single treatment of Remicade would be, but we’re still talking a couple thousand dollars (triple that if you include the required follow up visits).

All I want to do is get back to work… is that too much to ask? And it’s not that easy to move back to Florida, where my networking and connections are as I have no place to live, a broken aged car and no savings. This photo is my mom and I at the premiere of a film that I was the 1st Assistant Director on in late 2015.

A TV Sitcom Pilot I worked on… I miss working so much, and the people that I work with!

A film I wrote / directed, here I am with my main crew and cast.

So yeah, I’m hurt, frustrated and sad. I clinically suffer with major depression and this certainly isn’t helping. The Prednisone complicates that even further. I’m in too much pain to even write on a regular basis. I can’t even work remotely because my video editing laptop also broke late last year (unfixable motherboard type stuff) It was up there in age, but still. A replacement if I go pc laptop over my macbook is still going to be in the low $2000’s. Every aspect of my life has just fallen apart over the past year, I’ve lost everything, liquidated my life, it’s been extremely dispiriting to say the least.

I miss my beautiful Mac… R.I.P. :’(

I’ve been turned down for medicaid, turned down for obamacare, turned down for disability… I know I need to keep at it, it’s just hard; I’m bed-ridden most of the day (which causes my back… oh yeah, did I forget to mention the multiple back injuries I have? L4, L5 — L5, S1 & other herniated discs, a compressed disc, spinal stenosis and damage to my C1 & Atlas vertebrae) which causes me daily pain (sometimes absolutely excruciating (a few times a month where it requires medication (pain killers / muscle relaxers) and is exacerbated by not being able to stretch, exercise and having to stay in bed). I should probably take meds for it more frequently so I don’t have to suffer as much, but I just deal with it.

I have gone through and tried seeing a chiropractor and did a lot of physical therapy (sometimes aggressively) but in the end, none of it helped.

These are some of the medieval looking tools used on me during this session, and the result.

I have no transportation, my car is here, but not registered, plus sitting all that time, she now requires work that I can’t afford (at least a thousand).

Sadly, ulcerative colitis (even as severe as I have it) is entirely survivable, but not like this….

I prefer to write nonsensical random entries that make you go: “wtf?” and hopefully laugh, but I’m dealing with so much at the moment, I just had to write… something, anything to unclutter my brain a bit.

Please feel free to share similar stories in the comments section.

Spring has sprung, although I still feel like winter.

Stay healthy everyone… (especially now).

All photo’s taken by me or of me unless otherwise stated.

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Last updated November 27, 2018