2020 - Goal met... or Death in General Mental Anesthesia

It’s ironic… my previous entry on here.

I talked about how much blood I was losing and how severe the pain is.

What a joke!!!

Just slit my throat; there would be less blood, I assure you!

Oh, that’s right, Happy New Year!

Against my wishes, I tried getting a credit card to charge my way to see my holistic Dr. back in Florida because the clock is ticking much louder these days, my friends; It echoes in my ears. I was turned down since I have no income.

So let’s get gory, shall we?

I’ll spare you the photo’s, thank me later.

Three weeks after my last post on here, something happened, well… a few things.

1.  I saw my GI (Gastroenterologist) that admitted that the second chemo med I was on Xeljanz wasn’t working and wants to switch me to Stelara infusions.  So I got another tuberculosis test and it was negative, so it just had to be approved by Medicaid.

2.  In the meantime, I was supposed to go without any meds until I start Stelara.  This was on Nov, 14th, 2019.

3.  A couple of days without medication, despite it having no noticeable positive effects over the last several months (see entries) my health went South real damn quick! 

I was going  to the bathroom so many times / per day that I could barely walk.  I mentioned in my previous entry that I had lost about a half a cup of blood during yet another failed blood draw.  Now I was losing AT LEAST a half a cup of blood a day at home, with a huge uptick in pain (I know, it doesn’t seem possible to me either, but some of us were just put on this planet to test the boundaries of suffering).  This lasted for nearly 2 weeks!!!

Nine days in, I had the epiphany that this started when I finished off the chemo med. I contacted my GI and he told me to “GET TO THE CHOPPA!”  OK, he told me to call 911 and get to the hospital immediately!  I politely refused.  If you read me, then you know about all my hospital stints and why I do not wish to go.  Chances are the ER will just pump me full of Prednisone, in a few hours I’ll be feeling better and they’ll send me home where it’ll all just start over again.  My GI then said:  “If you don’t go to the hospital, then we aren’t responsible if you do not wake up in the morning”.  I was fine with that.  If I’m going to die (again), I’d rather it be at home.  I was literally bleeding to death. My GI then sent over a prescription for (you guessed it, Prednisone) and that was that.

A few days into the Prednisone I started feeling better, but that only lasted a week.  The second I started to wean off (just as it’s been over the past 27.5 years) things got worse.  Particularly on the pain front.  (Continuing from my last post, in respect to colitis pain.... ) Without Prednisone… I am feeling the full brunt of my extremely rare and severe form of ulcerative colitis.  To hell with my high threshold for pain, that is out the window!!!   I AM IN MOTHER FUCKING AGONIZING, TORTUROUS PAIN AND TOTAL DESPAIR!!!!

WORDS DO NOT EXIST TO DESCRIBE ONE TENTH OF THIS LEVEL OF PAIN AND SUFFERING.

If you’ve read me or my poetry, then you know what I’m talking about, but in regards to my health / uc specifically; until the last several months, I’ve been protected by Prednisone.  I’ve been living a lie.  I’ve been hurting, been sick and rightfully complained a plenty, but oh what a picnic that was!!!

I am completely immobile.  Lying down 22 hours a day, moaning in pain.  If I turn to either side… BAM… Running to the bathroom!  If I move my arm to try and get a drink of water or pick up my phone… BAM… Running to the bathroom!  If I cough or sneeze (well, too late).  And every single time I go to the bathroom it’s the most painful experience of my life.  Crying, wincing, writhing in pain.  Vomiting and if I’m throwing up in the toilet, then I’m bleeding out and having diarrhea on the floor, then in all my suffering, I have to then clean everything up including me.

Starting my Stelara infusions.

There is also a direct correlation to the severity of my colitis and intensity of my back pain.

Speaking of back pain… as chronic and as debilitating as it is, I’ll take any amount of back pain every day of the week and twice on Sunday over restlessness.  If you know what I’m talking about, then you agree.

With back pain, there are meds, or stretches, or sitting, standing, lying down (changing positions frequently) or deep tissue massages or ice packs or heat etc… or you just grin and bear it and it sucks!  But with restlessness.... your brain thinks 2 things.

1.  MAKE IT STOP!!!  MAKE IT STOP!!! MAKE IT STOP!!!  MAKE IT STOP!!! MAKE IT STOP!!!  MAKE IT STOP!!! MAKE IT STOP!!!  MAKE IT STOP!!!

or

2.  KILL YOURSELF!

That’s it.  You just totally obsess over whatever it takes to make it stop.  It starts in the middle of my back and creeps outwards to my right arm, forearm, fingers, down both legs to my feet and toes.   It drives me fucking insane!!!!  You can’t fathom the anxiety it causes.  I am not suicidal, but I get why there is such a high suicide rate among those that suffer with restlessness.  I take a muscle relaxer Robaxin (useless)  Gabepentin (anticonvulsant / nerve pain (meh)) Pain meds (when applicable (yawn))  Ointments such as Pensaid (good for minor or moderate pain (on my pain scale))

Plus heat and by heat, I mean 145 - 150 degrees F. 

You should only use that kind of heat therapeutically for maybe 15 - 20 minutes, me… 2+ hours.  At which point I finally have ‘some’ relief.  The difficult part (besides also dealing with ulcerative colitis during these episodes) is staying alive long enough to get relief.

With the ointments, it’s tough because not only can I not reach where I need to apply it, but they aren’t that effective; what IS effective is pressure.  Force so strong that it makes me cry out in pain.  I don’t have anyone here to do that for me.  My mom has such severe arthritis, she can’t.  If I could, I would get 3 deep tissue massages a day just so that I could get by.

That is my life to current date.

A few other updates:

The vertigo is a bit better 50% better.  I saw an ENT, had some tests done (Up my nose and down the throat, ever have that one?  Not fun.  I also got off the Baclofen 3 a day was too much, side effects were making it worse.  They switched me to Robaxin. 

Pain management has determined that the Fentanyl patches aren’t working (See previous entry).  I talked to them about something my holistic Dr. had mentioned to me a year ago.  Going on (low dose) Naltrexone.  At a high dose 50mg  it helps drug addicts get off of opioids, but a low dose 1.5 - 6mg it has shown to help ibd / ulcerative colitis patients.  I’m currently weaning off the patches, so we’ll see.

My holiday came and went.  (Chanukah). Not without a lot of effort and stamina; I did light the candles on the final night.

A VERY old pic of me taken back when I worked at Circuit City. I can’t believe I still have it. Old camera, printed on an old computer, this was the only job I could get because I was sick with ulcerative colitis (and on A LOT OF PREDNISONE) but it was 100% commission so I didn’t get in too much trouble leaving the sales floor often to go to the bathroom because I didn’t get paid if I wasn’t selling. Inevitably I was ‘let go’ for tardiness (a kind way of saying… “You’re too sick, too often to work here” (without allowing me any legal repercussions).

I like to give, I feel so much better about my life when I can just give unconditionally.  I can not.  It further depresses me, but this made me feel better… a handmade gift from my 3 year old niece, Talya. :)

One other nice thing happened. During the week of high dose Prednisone, I made it to the store. There was a family there. Father dressed as Santa Clause, Mother and 2 daughters (6, 7 years old) handing out gifts to every customer walking in / out of the store. I wish I could do something like this for people. It was really sweet and kind. I promised not to open it until the 25th.

Great utilitarian gift :)

New Year, new decade… 2020… Started as 2019 ended, sick and in pain, but it’s a long year and my goal is the same, except my goal has to happen in the next 2 months because I am quite confident I can’t last much longer than that.  I don’t have much more fight left in me.  I am so weakened by my disease and by all the pain that I can only think about it, not anything else.  My thoughts are corrupted.  I can’t watch a movie or read a book or fantasize about a better life because all my focus is on my suffering.  It truly is hell.

I’m at a point now, that I can’t afford my co-pays to see my Dr’s and get my meds.  It adds up and all I have are the donations to get me to Florida, what there is left.  Read the updates there and you’ll understand.

HEALTH - GOFUNDME PAGE

I’m still on the fence about spending money on a site like fiverr.com to try and find a social media marketer to help promote the gfm page. It may be the best option and could work out great! Or fail completely. It’s hard to pull the trigger.

You would think that a fraction of this would help me get on disability, yet just the other day, my latest appeal was declined. 

Happy Holidays to me.

Now, I have to get a law firm involved who will take a percentage and that, in and of itself has proven challenging.

I attempted this previously (as some of you have read).  I spoke with attorney’s and they won’t represent me UNLESS I can get a letter from my GI stating the severity of my disease and how disabling it is. 

So, I once again go to my GI, but they say:  “We won’t write a letter.  You have to get forms from your attorney that we must fill out, that’s the only way.”

I go to the attorney:  “We can’t give you any forms because we don’t represent you yet”.

Sigh… someone is being disingenuous with me.  I don’t know why no one will help.  The government wants me to work and pay taxes, well guess what?  I WANT TO WORK AND PAY TAXES!!!  Try helping me get back to that point in my life!!!  ASSHOLES!!!!

I thought about it, and it took days because as I said, my concentration is for shit!  I do have one Dr. whom has gone above and beyond to help me over the past year.  My primary care Dr.   So I contacted the lawyers office:  “If I get a letter from my pc and you find it compelling enough to take on my case, will you then provide me the form to send to my GI?”
The answer was “Yes”.

I immediately made an appointment to see her, not expecting a positive result, but she said not only that she would, but she gave me her work email address and told me to forward all my notes to her so that she can include everything.  She’s freaking amazing.  A Doctor that actually cares about her patients, who knew they still existed.  It feels so incredible to be treated like a human being, not a number or a dollar sign.  I am to pick up this letter (and drop it off tomorrow).  Fingers crossed.

It’s been all me, me, me in this entry and despite it being my PB, how are all of you?  How were your respective holidays?  Christmas… Kwanza… Pugunkah? New readers, feel free to chime in.

R.I.P. to my pugs Inspector Noodles & Sir Puddlesworth.

I hope this finds you all in good health.  Thanks for reading and of course continuing to support me in all that that encompasses. Tough read, I get it; tougher write.

I truly do wish you all a Happy New Year!

Last updated January 02, 2020