A Tropoocal Storm of Epic Pin Prick Pooportions! in General Mental Anesthesia

  • Oct. 22, 2019, 1:51 p.m.
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Words simply cannot express how sick I’ve been, how much pain I’ve endured, how much blood I’ve lost and how my back injuries have worsened immensely over the past 8 weeks (especially over the past 2-3 weeks!!!).

Put down that brand new book, you won’t need it if you read on, plus, I brought pics.

People are dying left and right on the news because of Fentanyl and whatever junkies mix it with because Fentanyl is 100x stronger than morphine and 50x stronger than heroin.

For both ulcerative colitis and back pain (and not just any back pain, but pain caused by multiple herniated discs, multiple bulging discs, compressed discs, spinal stenosis (narrowing of the spinal column) osteo and degenerative arthritis of the spine, pinched nerves, old fractures and two recent crushed vertebrae) type of pain… Plus the agony of my ulcerative colitis… I take Fentanyl patches.

I started with 12.5 mcg. As a patch, that means that 12.5mcg gets released into my blood stream every hour.

It didn’t work, that became 25mcg, than 37.5, now 50mcg… still, nothing. ZERO PAIN RELIEF!!!

And that’s not all.... I’m also taking Oxycodone 10-325 WITH an extra strength tylenol, so in reality it’s 10-825 and most of the time with both of those extremely strong pain meds, I get ZERO PAIN RELIEF!!!!!!!!!!!!

Then, when it does work (25 - 30% of the time) at best I get about 25 - 30% pain relief. And I am fucking grateful!!! believe me, and it’s so G-Ddamned depressing.

I don’t know why my brain isn’t receptive to pain meds, it irritates me. The strongest meds available are like plecebo’s to me; I suffer so damn much, I should just be able to take some medicine and feel better, but no. I am very sad, stressed and depressed over this. My life sucks.

So, that’s just to catch you up a bit on my health situation from a pain standpoint or to introduce you if you’re new; welcome, if so, please keep on reading if you like and feel free to comment.

It doesn’t get any better, but if you like The Princess Bride & the Pit of Despair, here’s another pit of despair…

My apologies for not writing more frequently. I do want to, but almost all of 2019 I’ve been dealing with vertigo; I haven’t been able to read or write. I’m just now in the last couple of days able to look at words without feeling sick to my stomach. Dizziness to the point of falling down, periods of vomiting through constant (and I mean CONSTANT) nausea.

To make matters worse, in early Sept when Hurricane Dorian came near:

We lost power for a day, but when it came back on, our ac didn’t. Long story short, it took a week to fix!!! Hot, humid, summer in North Carolina… It was even warmer in the bedrooms....

I didn’t get a minute of sleep that entire time, in fact, to date: my body hasn’t recovered fully (which is why I’ve been stuck with ung-dly amounts of needles and IV’s)

I’ve been basically living in the hospital / Dr’s offices ever since! The dizziness and nausea were through the roof!

I was falling over at home, I couldn’t see straight. I would try to catch myself, but when your hand jams on the baseboards, this happens:

I had a prescription for 4mg of Zofran for nausea and that was doubled, but it had no effect. I was even using preggo pops to little or no effect. Between this and my ulcerative colitis combined with not being on Prednisone for half this year and I’ve lost over 50lbs. To those who know me, know I don’t have it to lose. When healthy I’m generally about 170 - 175lbs (at 5‘11) I was up to 208 earlier this year, now I’m about 150lbs and still losing weight.

I can’t keep down food, even liquids. At times it got so bad that I’d throw up after sipping water. I was throwing up my medicines, that led to countless Dr. appointments and a handful of emergency hospital visits. I’m currently waiting to be referred to a physical therapy office or an ENT specialist to work on my brain and fixing that issue through motion and exercise.

Speaking of which…

Three weeks ago, I had a very rough stretch of 9 days.

I had been in Dr. offices all day getting tests done and hadn’t eaten (I do this often to try and prevent myself from being sick (ulcertaive colitis). No food in my system, I don’t get sick as much… still in as much pain though… at any rate, I was starving, so I went into a Panera bread to get a little something to eat. I slipped. I caught myself, but in doing so, I hurt or re-injured my back. I filled out the necessary forms with the manager.

A few days later, my mom & I were in a car crash. We were stopped at a red light and hit from behind. I was the passenger, but shock waves of pain radiated throughout my back. Went to the Dr. who treated me saying I had sprained my back, gave me a script or two.

A few days after that, I slipped in a grocery store. This one REALLY FUCKING HURT!!! I was stopped and looking at applesauce, you know the individual little cups? I was just in need of something light that I could eat and hopefully keep down. (Some of my meds I need to take with food, like Xarelto for my blood clots). I took one step and slipped, again, I didn’t fall, but caught myself on the shelves, plus a store employee was right there to kind of catch me. I was bent over the shelves and he was asking if I was ok. I wasn’t. I couldn’t straighten myself, it took about a minute. My right lower back was hurting very bad, but with the manager now involved… the process of filling out the incident report took 90 minutes!!! By the time we got through it was after midnight and the pain was searing hot now through my mid-back all the way to left shoulder. I didn’t want to go to the hospital, I know the ER process all too well, it’s a fucking nightmare!!! I had my mom to think about as well, she can’t drive at night, so I just chose to go home and to the Dr. the following day.

I was given Voltaren gel for my back… did nothing, then Pensaid 2.0 (It’s wicked strong, but it helps a little; all the pain just keeps coming back though).

Ever since, my back has been even worse than normal. There isn’t a single position standing, sitting or lying down where I get any relief whatsoever. I’m also waiting on a referral to a physical therapist to work on my back from my tailbone to my neck and all points right to left. I’m looking forward to it (and equally terrified) previous attempts were unsuccessful, except for deep tissue massages which bring me to tears, but the pain relief lasts only 4 - 6 hours then it’s right back to hell.

I have two MRI’s at the end of the month on my back, both lower and mid/upper (thoracic area).

Throughout all of this, we (my mom & I) have had to move. Can you imagine? I’m not suppose to lift anything (ANYTHING!!!) I can’t bend or twist and somehow I have to pack and move???

Yeah… a hell of a lot of pain and swearing was involved, my mom had to do more than her fair share and she’s elderly and recovering from a major stroke. How do you think that makes me feel? It’s good to get out of there, the owner was an asshole, never fixing anything and forcing us to pay full rent when we never had a fireplace to use, the ice maker never worked, there were holes in the ceiling and wall due to black mold (see previous entry). We were moving back to where we were living before here; a house that was destroyed by hurricane Florence. Insurance finally started fixing it up over the past few months. New roof, new floors, carpet (there was a lot of flooding) but many things still need to be fixed and a lot of that financially falls on us, for ex: the place needs to be exterminated. Having been vacant for a year+ there are bugs that have nested and there are ants everywhere, wasps outside, cockoaches in the garage and a brown recluse spider that we killed INSIDE THE HOUSE!!!!!!! I’ve been bitten by one years ago, still have the scar and thankful to still have my leg!!!

I fucking HATE bugs!!!

But there’s no money. Moving is expensive. I couldn’t pull my weight, so we needed to hire movers (they did a good job) but it costs a lot!!! Plus, there was no refrigerator or washer or dryer in the house, so we had to buy them!!! We had to buy a vacuum too as ours broke last year. There went any money available on a credit card!!! Nothing like increased debt when you’re broke. Due to a previous move where items were broken and/or stolen, we don’t have a dining room table or chairs or television for the living room, just one small tv for my mom’s room, no cable, Netflix, Hulu, nothing, so it’s useless. We have NO bedroom furniture at all, no nightstands or dressers etc… I don’t even have a bed frame and my mattress which is older than dirt and feels like sleeping on gravel doesn’t help my back any… I really miss my waterbed, yeah, I had one!!!! Best thing EVER!!!!

I’m not complaining, I’m happy to have a roof over my head, but I wish some parts of my life were just normal. I want to take these things for granted like most people do, you know? I go days without sleep; this past week for example, I got 5 hours of sleep(for the week!) I can’t get comfortable; I am fatigued… in every possible sense of the word.

I’ve tried every sleep medication, but just like pain meds… they don’t work. Nothing ever works!

Icing on the cake? My mom left all of our silverware in the old place. I volunteered to sneak back in overnight (we still had a key because we had to lock up) and get the rest of our things, but my mom wouldn’t let me thinking that the owner would let us back in the day after we left. They didn’t.

We’re Jewish and although we don’t keep kosher, growing up we always had separate plates, bowls & silverware for meat and another set for dairy. We would just get two different styles to know the difference. This is a tradition we still do and we just lost all of our silverware and steak knives. Oh you know, about $350 - $400 worth, no big deal. :’( My mom is absolutely crushed that she forgot (a side effect of the stroke, her memory took a real big hit).

The silverware was replaced a few years ago. Two full sets that cost about $100 - $125 each (my mom has mentioned it many times over the past 3 weeks) and the steak knives, they were new! Well, less than a year. A nice 8 piece Dalstrong set from Amazon on a lightning deal. I know because I chipped in to help buy it for my mom as a gift.

It really just seems my entire life is one loss after another after another.

So, who wants to know how the ulcerative colitis is doing?

All of you??? Wow, ok. Be forewarned

But remember kiddo’s: What does Uncle Jay always say?

THE FULL STORY & HOW YOU CAN HELP (Literally, anything (even if you think it’s insignificant - Like a share) honestly it really helps!!!)

I’m quite tired of going to the bathroom 15x/day on average. I’m bleeding out like a stuck pig! I think on my last entry I said that I had an iron transfusion, yes? I’ve had 3 more since and scheduled for #5 soon.

Raise your hands if you know how much I HATE NEEDLES!!! I’ve been stuck with so many needles in the past month, I’ve lost count. At least 20 - 25. Get this… If your hemoglobin is below 13, you’re anemic. It should be between 13 - 18 I believe. I was at a 9.9, so I had an iron transfusion which should have brought it up to about 13, but a few days later, I had a cat scan and needed an IV for the contrast. The phlebotomist at the hospital, sticks my hand and blood literally shoots up like a fountain!!! There was blood all over me (the towel they had over my legs) my legs, arm, hand, on her, on the floor, the wall… she didn’t know what to do, she kept asking, what do I do? Another nurse kept saying she was doing a good job, I’m like wtf??? Finally, the other nurse pinches my vein to get it to stop, but if you look at this photo, they never undid the the fucking tourniquet!!!

I tried to distract myself by turning my head and phone on, but I double clicked which opened my camera. I missed all the good bits, this was several minutes later, but you can still see some blood on the floor and the towel that was on me was gone. Sorry (it’s vertical, like I said, I didn’t know it was on at the time).

I estimate that I lost at least a half cup of blood (and this after (in the same day) having just did a blood test where they took 7 tubes of blood).

2 days later, I go in to have another blood test at my hematologists office and my hemoglobin was at 10.0. .01 higher after an iron transfusion less than a week ago! Gee, I wonder why?!?!

I may yet have my 5th iron transfusion in as my months in the coming days as I have a colonoscopy this week. I had 3 last year, the inflammation so severe, that they couldn’t get the scope all the way in on the 1st 2 attempts. On the 3rd, I nearly died. A few minutes after I was given anesthesia, my oxygen levels dropped into the low 70’s, so they were forced to pull me out, but my gastroenterologist doing the scope said: Sorry, but I have to go though with it and I was awake for the entire thing!!! They anesthetize you for a reason; it’s too painful of a procedure to be awake for! I can’t even put into words the insufferable pain I was in!

So, my current primary care Dr. suspects that at the time (and it’s very likely) that I was anemic and that may have been the cause of my O2 levels dropping, so we’re trying to avoid that this time around. They have to check for colon cancer, so it’s not like I can say… no thanks.

I had other blood test nightmares this past month. It’s not bad at the oncology center (I’m still on chemo (which doesn’t work, unless you count side effects)) on my UC, but there’s a difference between getting your blood drawn by someone who is qualified (your Dr’s office) vs someone who is an expert (people who deal with bad sticks like me, scar tissue, dehydrated, rolling veins with lots of valves etc…). They tell me to tell my Dr. or other phlebotomists to use the smallest gauge needle necessary, like a 16 or an 18 to make it easier on me, but they never listen! I ask to go in the crux of my elbow, because it hurts less there, but she insisted to go in my hand, a small vein to the side of my hand. At my primary care Dr’s office, a nurse there used a 20 gauge needle in that little vein. I mean, she was right up against the bone!!!

I was in tears… and she’s pushing and pushing and trying to get this tube in and guess what? It didn’t work! This went on a few more times just scraping it along to complete failure until I finally said: “Mercy! I can’t do anymore”. I needed fluids because of severe dehydration (this was when I was vomiting a lot (a few weeks ago)). A couple of days later, I ended up in the hospital.

Then there’s the ‘accidents’. I can’t just do nothing all the time, I get antsy. Plus, I have to go to Dr’s appointments nonstop. At one point, my mom had to go to the post office (it was 4:45pm during the week). We had just left an appt of mine and I got sick. There’s no bathroom in the post office and so, I ended up going in the car in the parking lot. It was the 2nd time that week that, that happened.

Another time (twice) we had to pull over so I could throw up, one of those times I puked in my hands and on my lap because we were in traffic.

The worst was a couple of weeks ago. I was in the grocery store and got a cramp. You need to understand that with ulcerative colitis (at this severity) I have cramps 24/7 but sometimes they get worse than usual and when that happens, I have a few seconds (LITERALLY) to get to a toilet, I can’t clench like you can, I don’t have the muscular control like a normal person. I was about 50 feet away from the bathroom and it was coming out, not even stool (because I don’t eat much) but blood. I know it was on the floor, like I dragged a bloody carcass into the restroom. When I finally got to a stall, it was all over my legs, my feet (socks and shoes), my waist, my back, my thighs, calves… just fucking everywhere, stool and blood and bile. It sounds like a comical mess and it would be, I’d laugh about it now if not for the unbridled agony I was in.

I had to ‘try’ and clean myself up as best I could, then I had to bathe myself, wash my clothes and dry them with the air dryer, just enough to wear them out of the store without drawing too much more attention to myself. My boxers… it’s not the 1st time I’ve had to throw them away. You just can’t walk out of the store with them in your hand covered in filth or soaking wet. It’s expensive always replacing them too!

I guess I should end on the worse news of all, oh yes, it gets worse… it always gets worse!

My beloved pug and my best friend: Inspector Noodles has died.

He was 16.5. I know that’s a long life for a pug, thanks to a raw meat diet and exercise, but it doesn’t help the hurt at all. I really need him now too; my heart aches just thinking about him.

R.I.P. Inspector Noodles

I miss you Inspector Noodles!

Happy Halloween…


Last updated January 02, 2020


Marg October 22, 2019

Oh Jay I’m so sorry about Inspector Noodles! I always thought thank God for him because I’m sure he helped a bit to get through some of the worst times. He was your best friend through thick and thin - that must be a tremendous loss :(

There’s a show called Diagnosis on Netflix where folk write to this doctor with a variety of symptoms which appear to defy diagnosis. Then the doctor shares that worldwide and professionals, civilians, experts, etc all give their opinion as to what they think is going on or say if they recognise the symptoms. I know you do have diagnoses for your conditions but there’s a lot of stuff which doesn’t appear to be working - I wondered if it would be worth contacting her? (If you’re not up to it I would do it for you but may need lots of info I don’t have). It’s a very distant shot in the dark I know but it made me think of you when I watched it. I’m so sorry you’re still going through this hell - I’ve been thinking about you a lot - just feel so helpless - your spirit must be made of iron to withstand all this crap!

Exhumed By Scrying Eyes Marg ⋅ January 02, 2020

He definitely did, he was my temporary reprieve from the worst parts of depression. I haven't been able to make any attempts of contacting that show on my behalf, It's been a struggle to stay alive. I um... I barely exist at this point.

I believe my spirit IS in fact made of iron, mainly because it feels so damn heavy! But I understand you and I thank you for thinking of me and as always sending me kind thoughts and inspiring words.

I am behind on here, but I hope you had a wonderful holiday (holidays) and a very happy, and healthy New Year!

Marg Exhumed By Scrying Eyes ⋅ January 02, 2020

That’s what I thought - there’s no way you’d be able to contact the show in the condition you’re in but there’s no way I would go ahead without you knowing. I could, with your permission, make contact for you and, again with your permission, point them in the direction of your Just Giving page which may supply all the necessary details?

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