Not Sure I'll Live Long Enough to Save My Life in General Mental Anesthesia

The title is as serious as it comes.

I just spent another 4 days in the hospital. My second home.

This entry is in direct relation to my previous one, if you choose not to read it, I’ll sum up.

As I have often said; and yes, because I am very proud of the fact (especially considering my past with homelessness and almost 2 decades of child abuse) I have NEVER done drugs a day in my life. I’ve NEVER smoked a cigarette or anything else. Yes, I do (well, not in the last few years sans a glass of wine on Passover or Mother’s day) drink and have drank socially, but not very often.

I don’t have an addictive personality, so I can’t fathom that NEED to get a fix, but I do understand the bodies need for ‘help’, such as pain relief.

For example, I just received a partial overview of my latest mri results on my back which revealed 6 fractured vertebrae and 8 herniated discs including pinched nerves, bulging and compressed discs, spinal stenosis, damage to my Atlas vertebrae (neck) degenerative arthritis of the spine as well as a bit of osteoarthritis. And this is an overview, not comprehensive, so there’s more.

To say that I am in extreme daily agony would be an understatement, and this does not include my rare and chronic form of Ulcerative Colitis or (pancolitis) and avascular necrosis of the knees (rotting bones)… the list goes on.

I am in constant pain!!!

My GoFundMe Link to try and get better medical help

To that point, I am in “pain management”. This is all a recap to my readers and I apologize, but I need to keep a record of things. I’ve always had a very high threshold for pain, most would say I still do, but I’m not sure I can claim that anymore. I’ve torn ligaments and tendons and used a couple of Advil and a lot of physical therapy to deal with it. Everyone says that I am the strongest person they know. I don’t think I can believe that anymore. I’ve suffered with major depression since I was 8 years old. I’ve survived cutting and suicide attempts, years of homelessness and isolation, but fought my way out all by myself despite my illnesses and injuries to work and get a roof over my head and a college education etc… but things are different now.

I have been so physically weakened, that it has weakened me mentally; it has broken me down.

Pain management tried some strong meds, they didn’t work, then upped the ante to Fentanyl patches. 12.5mcg all the way to 50mcg. At the same time, I was on Oxycodone with acetaminophen (aka: Percocet) with an extra strength Tylenol and at best I got 25 - 30% pain relief, just 25-30% of the time. My body simply rejects the help or is in such insurmountable amounts of pain that nothing works. Fentanyl alone is 50 times stronger than Morphine and 30 times stronger than Heroin. To me, it was a placebo, it just did nothing.

So I told pain management that I wanted to stop and try something else.

They properly weaned me off of the Fentanyl over the course of 5 weeks, but told me to stop the Oxycodone when I received the new medication (Low Dose Naltrexone) SEE PREVIOUS ENTRY.

So, I’m no longer going to recap and move on.

RESTLESSNESS is an unfortunate side effect of my back injuries. It happens from time to time and it is an unmitigated HELL!!!

One week ago, I took my last Oxycodone in the afternoon and that night, restlessness began. It started as it always does: in the upper back (center of my spine) No twitching or anything, it’s a sensation and one that I can not really put into words. Uncomfortable would the the grossest of understatements. It’s like insects marching along your spine. Up and down and up and down. An itch you can’t scratch and even if you do scratch it, it’s still there. That sensation then goes to my right arm, my right elbow, then to my right forearm and my two outside fingers (pinky and ring finger). Just the sensation, under my skin in the deep muscle tissue, like you can feel all your nerve endings firing, it’s almost painful, but not quite and what it does is; it makes you so uncomfortable that you involuntarily move. You stretch out your arm (out, in, out, in). You stretch and tighten your fingers, you make a fist, you open it up, you move your fingers. You do anything humanly possible to satiate this feeling, but it never goes away, it never fades, it never changes, it’s just there, torturing you.

Then, I feel it in my right knee, my calf, shin and right foot and toes. Next, I feel it in my left buttock and thigh then down that leg as well. Same thing, same feeling, except now, you start twitching. Your feet and knees mostly, but sometimes in your arms and hands.

I was taking muscle relaxers (ZERO effect)
I was taking anticonvulsants (ZERO effect)
I was trying ice packs and heating pads (ZERO effect)
I was trying prescribed creams and oils (ZERO effect)

The sensation in my by upper back, in my spine is relentless. I am laying down, turning to my left, my right, trying to stretch over and over and over and over again… I have to sit up, then back down again, then sit up, then stand. I would dig my back into the corner of a wall to try and release some pressure. It’s painful and I cry out, but it works, so I go to lay down. Things calm, but only for a minute or two, then it starts all over… left side, right side, sit up, stand, lay down, sit, stretch....

Your brain does not know how to quantify this level of discomfort. It screams at you over and over again....

**MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!! MAKE IT STOP!!!

SUICIDE....

HURT YOURSELF…

DO WHATEVER YOU HAVE TO IN ORDER TO JUST MAKE THIS STOP!!!!!!!!!**

It’s all you can think.

Imagine this going on for 3 days straight…

It was taking an insane amount of willpower to not hurt or kill myself, but I could feel myself mentally weakening rapidly. I hadn’t slept at all and I knew I was going to do something bad.

I thought… maybe it’s anemia. Restlessness is a symptom of anemia and I was bleeding as a result of my ulcerative colitis, plus I knew my iron was low, so on Tuesday, I called my hematologist and asked if I could make an immediate appointment to get my blood checked, she said: “Yes” and so my mom drove me there.

It turns out that I was still low on iron, but my hemoglobin actually went up somehow, so I didn’t need any iron.

This was the worst news I could have heard.

They said I should go to the Emergency Room at the hospital next door. It was 3:30pm, so I did.

I got into triage fairly quickly, stabbed with yet another IV, had a cat scan and other tests; wires dangling off of me from everywhere.

My body was convulsing terribly. It was then that I realized… this all started when I stopped the Oxycodone. Maybe I am in withdrawal. I told the Nurse and Dr. and they couldn’t believe that pain management didn’t wean me off of it. I was in opioid withdrawal!!!

I was given a Clonidine and weirdly; grape flavored liquid Tylenol and one Benedryl.

The results were not spectacular.

I was then given Remeron and a Tizanidine. I had a horrible reaction to this. My eyes swelled shut, my speech was so impaired that I could not say full words. I was dizzy and drowsy, but I couldn’t sleep. I didn’t have a bed, just a half bed, set up like a chair, so I sat, leaned forward, leaned back, leaned to the left and right. I tried to stand, but it was hard to do without falling, but I HAD TO!!! Rinse / Repeat.

This went on for hours until my blood pressure started dropping… 60 over 40 to 50 something over 30 something. I was then moved over to trauma, in a room with a bed. I was there for 11 more hours before finally being admitted at 11am on Wednesday.

The restlessness calmed a bit that afternoon and night, but I still didn’t get any sleep with more blood draws and blood pressure checks at all hours.

On Thursday, the restlessness was slowly starting to pick up again. That sensation in my spine, in my upper back and into my right arm. Meds just weren’t working. That night it worsened, I kept asking for help, but there’s only so much the nurse can do. Whenever I ask for a med, she has to call the Dr. but there was only one Dr. available for the entire hospital and he just stays in his office.

This is me at one point trying to hold my leg / foot still.

I was speaking to the nurse and mentioned that the only thing that kind of helped the restlessness was the Oxycodone, but I didn’t want to go back on it. She mentioned Toradol (which I have had in the past). I didn’t know if it would help, but agreed. She called the Dr. and was on the phone with him all of 5 seconds! He said: “Give him a Tylenol”.

Really? Wtf is that going to do?

When you make well over 6 figures a year, should it not be your responsibility to look up a patients chart and then determine a proper course of action? Why should the patients suffer just because the hospital doesn’t hire enough help? The whole system is broken. I was in a real bad way and nobody could help me!!!

This was about 2am Friday, by 2:30am I was walking up and down the halls dragging that medieval torture device (IV stand) with me. 3am, I lay down. Left side for 5 seconds, right side for 5 seconds, sitting up, standing. Every 5 seconds I was in a different position.

3am, I’m walking the halls again. even tried sleeping in the chair in my room, but same thing.

By 5am I can barely stand (6 days without sleep). I just want to kill myself!

This cycle continues throughout the day on Friday when I hear that my blood culture came back with a staff infection. Apparently it was so severe that I needed Vancomycin through IV (a stronger version than I’ve had previously for c-diff). I found out the hard way, I’m allergic to it. I broke out in a terrible rash. So then I was given Zylox through IV.

I could feel the restlessness getting worse ever so slowly, but it was determined that I was a 50/50 on staying another night or two or if it was safe for me to go home. A second blood test showed that I didn’t have a staff infection and that they somehow corrupted my first one (sigh…)

My mom can’t drive at night and she was at the hospital. It was getting late so we made the decision to leave.

My back was really, really hurting by now and the restlessness was getting bad. I was now started to twitch again, my feet tapping and so on.

It continued to worsen to the point of it being as bad as it was the day I went to the Emergency room. Another all-nighter from hell last night. I was so tired, I was so sore, I was so aggrivated!

Around 5am (and I hate to admit this) I went out to the garage to look for a hammer. I was going to smash it into my back or dig the nail pulling side in as deep as I could, but couldn’t find it. I could barely stand, so after several minutes, I gave up.

I took so many pills, muscle relaxers (Robaxin) - Gabepentin (anticonvulsant) - Low Dose Naltrexone, Lexapro, Extra Strength Tylenol, Toradol and finally a Diazapam.

I was getting no relief.

Finally, around 7:30am today (Saturday) things calmed down a bit (maybe 50%) and I passed out.

I woke up several times (getting sick from Colitis) but was able to go back to sleep.

The restlessness has remained the same throughout the day, but now that it is evening, I can feel the anxiety creeping in. I am truly scared. I am completely exhausted and I fear the worst.

I am not as strong as I used to be.

I am beaten into into submission.

Last updated January 25, 2020