Mired in Mortiferous Circumspection in General Mental Anesthesia

Wow, I owe you guys a lot of love!

My lengthy absence is relevant to my health. Continuing from my previous entry regarding fatigue, the results are in, that and more!

I have Chronic Fatigue Syndrome.

But because of how poor I feel, how tired I am, I just can’t write out a full entry on here, let alone a few to update you all on my health, it’s not just CFS.

I don’t know if you follow me or not; if you are new to my page, “Welcome”. I apologize for it’s lack of interest and creativity (many of which can be found in previous entries / books) but the truth of my situation is that I have been dealing with chronic health issues which has consumed my thoughts and therefore writing.

If you aren’t following along with my GO FUND ME page (the updates I write, that’s how I’d like to go about posting this (or the next few entries) to catch you up, it’s a lot). If you are in for a read, if you like drama, possibly horror than this or these next few entries will be right up your alley.

I will be embarrassed and humiliated in video and pics, but my reality is not one that can be described with mere words, I’ve tried.

If there’s no character limitation on PB, put your feet up and get comfortable. I don’t want to write several entries. I urge you to read on, not for me, but because much of the information is important, it must be shared!

A WARNING: Some parts may “trigger” those with sensitivities toward emotional distress. Subject matter that “should” be talked about but often shunned.

I am an open book.

Page 1.

MARCH 27, 2021

So not only do I have CFS, but I also have an under active thyroid or Hyperthyroidism. Which can not only be caused by an autoimmune disease (ulcerative colitis) but can also be caused by long term Prednisone use. Sound familiar?

Now I have to take a thyroid medication and have frequent blood draws for the rest of my life. :(
I also need to have an ultrasound done on my throat.

Speaking of needles… I got the first dose of the Pfizer vaccine!

I know, finally some good news, right???

Well, unfortunately… it led to a 5 day fever (2 days of which hit 104.1).

That was rough, especially since I’m not supposed to take a fever reducer because of the blood thinner I’m on. What does that mean? It means I can’t get the second does without my primary care Dr’s permission, it may not be safe or may be life threatening considering 2nd dose side effects are commonly worse.

I see my pcp in a few days.

I also went and saw a dermatologist just to get a couple of small moles looked at and he ended up finding 15 (what I thought were just normal flat nothing freckles) that could be cancerous and need to be removed and biopsied. And since I have Medicaid now, they will only be able to do one at a time, how tortuous is that?!?! 15 visits????

And speaking of torture…

I’m still dealing with occasional restlessness.

Last week I started feeling the restlessness a bit, the following day it got worse and I was going crazy, then on the third day… I just couldn’t take it anymore.

For those of you that follow me and read these updates, you know how restlessness affects people. That there’s a very high suicide rate with those who suffer with it. I completely understand. I am not suicidal, I do not want to hurt myself, but I would gladly take 10/10 screaming and crying pain everyday for the rest of my life over one more second of restlessness, that’s how bad it is! It just wears on you and breaks you down mentally. And it’s not RLS (restless leg syndrome) not for me, it’s full body restlessness. Mostly in the legs, but in my fingers, hands, elbows, forearms, and I’ve never experienced restlessness without also feeling it in the thoracic region in my back (the center of my spine). I don’t know what’s causing it, but I know it’s back related. I also know that things like anemia and medication side effects exacerbate the issue. It doesn’t hurt, but it can’t be put into words, the uncomfortableness; the irritating, unstoppable sensation within. Your brain eventually goes on a loop telling you to “MAKE IT STOP! MAKE IT STOP!! MAKE IT STOP!!! MAKE IT STOP!!!! MAKE IT STOP!!!!!” You’ll do ANYTHING to make it stop. You’ll saw your own leg off just to get your mind off the sensation of restlessness.

So it got to a point that I began to hurt myself, I won’t get into how, and I am EXTREMELY mentally strong. If you know me, you know that’s true. It was at this point that I knew I needed help and as much as I didn’t want to go, it was Sunday and I went to the Emergency Room.

It didn’t take that long to get into triage and into a private room. I was put on IV fluids and given injected meds (Vallium, Ativan, Norflex, Metholcarbamol). - See video -

The restlessness slowed, but didn’t stop. I was really stressed out. When I say that it breaks you down mentally, I was full on crying in distress when the Dr. came in.

I can sum up (restlessness) in one word: “UNSURVIVABLE”. The ER Dr. recommended that I get on long term anxiety meds and as much as I am against that notion, I actually agree. I’m just going through so much right now (medically speaking) I’m so worried, I’m afraid, I’m constantly anxious, yeah… I need some help, so I’ll mention this to my pcp Dr., when I see her next week.

Tomorrow is my birthday, I loathe my birthday. I haven’t celebrated it since I was 30, I think that was the last time I voluntarily chose to, for a couple of reasons.

1. My roommate and one of my best friends at the time threw me a party, about 30 people showed up and a few weeks later he blew his head off.

2. (and this is the real reason) My entire life has been a struggle. Child abuse, homelessness, illness, depression. I’m permanently sad. I can’t work, I have no friends (well no one within a thousand miles of me). I have no joy in my life, just non stop pain and suffering and stress for as long as I can remember. I don’t want to celebrate that. I don’t want to think about it. I really just want to be ignored. If things were better, I’d feel differently, but I’m miserable, and I’m not going to wear a fake smile just because it’s expected of me. Mentally, I feel as my body does, and it doesn’t get much worse than that.
   
   PAGE 2.

APRIL 6, 2021

This has been near impossible for me to write, and it will be even more difficult for you to read. I encourage you to read it however, and I encourage you to share it because my life may depend on it, and if not mine, then certainly someone else’s.

This update will contain subject matter that is frequently banned on social media, which I think is extremely detrimental to the authors well being.

This is hard on me, so please bear with me.

With respiratory disease; I have these spasmodic coughing fits, like severe coughing that never ends and it’s violent. (most likely because of eosinophilic asthma) I got used to bracing myself when this happens so I don’t re-injure my back, as it’s very easy to break / fracture a vertebrae with osteoporosis. This happened to me and it came on so suddenly the day before my birthday (late March) and I couldn’t brace myself. I immediately hurt my lower back (and it was bad, really bad) I knew it instantly.

I laid down, put heat on it… it didn’t help, tried ice packs… no help… tried a massager, but it was sooo painful, I couldn’t use it. The pain was a 7/10 on my pain scale (which is extremely high because as you know I have a very high tolerance for pain).

The next day, the pain was an 8/10. I could barely stand and walk. I had trouble breathing when I did and the restlessness started back up, I was in hell!

The day after my birthday, the pain was a 9/10. I could barely breathe if I wasn’t lying down. I couldn’t stand straight up, it was impossible and I could hardly move at all.

Even if a Dr. wanted to do an mri, my insurance as you know would tell them to do an x-ray first, plus with my vulnerabilities it was quite possible that I had broken something, only this was too painful to be that. I went to urgent care for some x-rays and they were negative. No broken vertebrae, but that means that I damaged soft tissue, discs etc… and the pain was burning like hell fire!!! I knew I had ruptured at least one bulging disc which was leaking spinal fluid onto a nerve or nerves. The pain was a 9.5/10 at this point.

The Dr. wrote a prescription for 4mg Zanaflex, a very strong muscle relaxer and a high dose (I already take three others!!!). I asked if it was safe to take with my other meds and she assured me that it was.

I was in a wheelchair and my mom picked me up. I told her not to leave the parking lot. I was in so much pain I didn’t think I could tolerate a single bump or turn in the road. The restlessness had me shaking and going insane, I had to make it stop. I was literally going crazy!!! I was in tears, crying in pain, not just pain, but pang. I grabbed (well… something very heavy (similar to a wrench)) and started to beat myself with it (my chest, my arms, my face) as hard as I could just to get my mind off of the restlessness, that’s how wicked it is, in front of my mom no less! I feel so guilty and horrible. It doesn’t matter how strong a person is, it breaks you mentally, and I hear it ALL the time… “You’re so strong, you’re so mentally strong”. I agree, I am, I know I am, but I am up against an enemy in RESTLESSNESS that has my number (everyone’s number, really).

My mom called the pharmacy to see if the medication had been called in yet, it hadn’t. She called the Dr’s office and said I was screaming and crying in pain, and that they had better send over that prescription right frigging now!

Long story short… the Dr’s office screwed up and I never got the prescription, not until the following evening.

That night…

I tried to kill myself.

I won’t discuss how.

Now, don’t get the wrong idea. I do NOT want to hurt myself. I do NOT want to kill myself. I am NOT SUICIDAL. I don’t know if any of you have ever been suicidal before, I have, but not in decades.

When you are suicidal, you don’t care or think about those you love or those that love you or will miss you. You only care about ending the pain you’re in, in that exact moment. Whatever emotional trauma you’re enduring, it has to end, and that’s all you think about, you have what’s known as ‘tunnel vision’ and you can’t see outside of that.

That’s restlessness. Pain sucks, it’s miserable, I don’t want to be in pain, and restlessness is not painful, but I would take 10/10 screaming pain everyday of my life over one more second of restlessness, and if you read my updates on here regularly, I’ve mentioned that A LOT!!!

I don’t know how to put it into words, the irritability, the agitation of have to move, and although my legs might be twitching, I feel this same sensation in parts of my body that aren’t moving, my fingers, elbow, forearms… it’s like ants marching on my bones and it NEVER FUCKING STOPS!!!!!!!!!

So what happens is… your brain goes into tunnel vision. You think just one thing.... MAKE IT STOP, MAKE IT STOP, MAKE IT STOP, MAKE IT STOP, MAKE IT STOP, MAKE IT STOP, MAKE IT STOP!!!!!!!!!!!!!!! Over and over and over and over again. And you fucking go insane!!!!!!!!!!!!!!!!!!!! You lose the ability to think cognitively; you just react because you HAVE to!!!

You’ll hurt yourself just to temporarily take your mind off the sensation of restlessness which eventually becomes a suicidal action.

Here’s what’s really sad… going through this myself. I completely understand the reason for the high rate of suicide with those who suffer with restlessness, and I know that none of them actually wanted to kill themselves… all they wanted, was to get the restlessness to stop.

I’m heartbroken over this.

They didn’t deserve to die, but there was no help for them, just like there is no help for me.

I can deal with all the pain in the world if I have to, but restlessness (like I said before) is “unsurvivable”.

.

Obviously, I didn’t die, but I am hurt. So the next day I went to my pcp appt, got Diazepam (vallium) for anxiety and then to my pain management appt where I explained the situation. I asked them about the Zanaflex and they also said it was well tolerated and that it was ok with my other meds, so that was the plan for tonight.

I’m trying, I’m really trying.

That night, I took the anxiety med, it helped a ‘little’. I asked my mom to rub my back with her nails, but her hands are so weak and in pain from arthritis it’s hard. I really wanted to be stabbed with a fork, but I took what I could get, and it also helped a bit.

Now, you guys know me with meds, I’m very cautious. Dr’s said everything was ok, but I don’t trust anyone, so I took a Flexeril (muscle relaxer) around 6 or 7pm (with some other meds). I took the Diazepam then as well. At 10pm I took my pain med and other back medication. I was supposed to take another muscle relaxer called Methocarbamol, but I decided to skip it because I was afraid of taking it too close to when I was going to take the Zanaflex and I wanted to be careful. I waited until 2am to take the Zanaflex, and that’s the last thing I remember, I guess I fell asleep.

But it didn’t last long because I awoke and I saw these things coming at me from out of the dark, being attacked by animals lunging at me, lions, elephants, snakes, shadows… I was hallucinating! I didn’t feel right at all, I was confused, I didn’t know what was going on. I’ve never done drugs before (you know what I mean). I’ve never even smoked a cigarette. I hated whatever was going on, it was horrible!

I grabbed my phone, but it was too bright. I lowered the brightness to about 2%. I remember trying to type in “zanaflex hallucinations” but I could barely open my eyes, I couldn’t see anything.

Then I tried to use the microphone and say: “zanaflex hallucinations” or something like that. but idk if it worked; I don’t think my phone understood me anyways because my speech was very slurred.

So I tried to get out of bed, but I don’t think I could stand and then I don’t remember anything.

Next thing I know, I wake up face down on the floor. I passed out and fell. I thought to myself… “Am I on the carpet? How did I get here?” I was in the middle of my room. I don’t know if I was unconscious for 5 minutes or 2 hours.

I thought… “I need to go to the hospital, or at least to my mom’s room”. I had no idea what time it was. I crawled/slithered my way to her room on the other side of the house. I banged into her door. I couldn’t really use my arms, so trying to reach and turn the doorknob was a struggle, but I scratched and clawed until I got it open and then I collapsed on the floor.

I think I was trying to talk, but I couldn’t. My mom woke up and was looking for me, but obviously I wasn’t standing so she couldn’t see me. She got up and turned me over. I was very pale she said. She was asking me questions, but I don’t remember what they were. I tried to tell her I think I had overdosed, but I couldn’t say sentences, so I just said… Od, odying… etc… eventually, she understood.

She put a cool compress on my head, and kept talking to me, but I was drifting in and out, I really don’t remember much except my pug Boba Fetch lying down by my head and licking my face.

(This is not from that night, but another time I was in pain and my pug giving me some attention)

After about an hour, I started to be able to use my arms and hands a little bit and my mom helped me get up. between her and the wall, I got back into bed. I drank some water, by now it was 6am. 3 hours passed when I had absolutely no idea what happened to me.
I skipped all my meds the next day and didn’t even eat until 5pm, I slept most of the day.

The following day (It was the weekend, so I had no access to my Dr’s) I went to my pharmacy and explained all this. She said I did everything right spacing out my meds like I did, and although Zanaflex is well received, that 10% of patients don’t tolerate that medication well… I just so happen to be in that 10%, so we threw the medication away.

She also had a good suggestion.

She told me to call pain management and ask them to refer me to a specific “Pain Management Psychiatrist”. They are different from regular shrinks because they only deal with people who suffer in excruciating chronic physical pain, anxiety and neurological disorders. Considering that every time I feel the restlessness, I feel that sensation in my center spine, I believe the cause to be neurological with anxiety being a contributing factor. Of course my anemia and side effects of meds exacerbate the condition, but it’s root cause is in my spine. I KNOW IT!!!!

Like I said… I’m turning over every stone to try and beat this thing. You guys, my family, my friends, my online support network, you’re all a huge reason for me to live. I don’t want to die. I don’t want to write this entry/update, but restlessness is such an ung-dly powerful force, it has made me so fragile mentally that I am truly scared of what I am capable of, so I’m seeking as much help as I can.

I’m currently waiting to hear back from pain management.

Again, I am NOT suicidal. I have many reasons to live.

I have family that loves me, I’m blessed to have many friends. My best friend and I have been best friends since the late 80’s; I recognize how special that is, how special he is. My work is my love and passion. I want to continue helping the homeless and abused children and continue my fight for the environment and endangered species etc… I have so many ideas that I want to accomplish, I have plans for my future, but I fear that RESTLESSNESS in the blink of an eye can take all of that away from me and I can not defend myself.

So, I’m arming myself with education, with support and I feel very passionately that suicide is something that should be embraced as a topic of conversation, not something that is taboo. I can’t write about this on Twitter or Facebook or other social networks, I’ll be banned (it’s happened).

That’s the single worst thing you can do when someone in need is reaching out for help.

Everywhere should be an open forum (not to encourage the act) but people need to purge, they need listeners; at least allow them to share their feelings with those (be it people or social media outlets) they are comfortable sharing them with; they need hugs… even if it’s from thousands of miles away.

Thank you to all who share my story.

If I didn’t have ulcerative colitis, I wouldn’t have avascular necrosis in my knees, osteoporosis in my spine (which has led to numerous other back injuries and broken vertebrae). My asthma wouldn’t require a nebulizer and likely a biologic (dangerous side effect injection medication). I wouldn’t have Hyperthyroidism. I wouldn’t have 24 prescription medications and a ridiculous amount of side effects. I wouldn’t be so anemic because I lose so much blood when I go to the bathroom that I need monthly iron transfusions. I wouldn’t be suffering with RESTLESSNESS!!!! And all this additional anxiety and stress.

Ulcerative colitis is more than just a tummy ache, it’s more than just diarrhea, it’s so much more than you can fathom, and I just hope that in all my updates; in all my embarrassment and photos and videos and humiliation that I’m educating people on what this disease is truly like for some people.

If you’ve read this, as I always say, “Thank you” and I appreciate you, I truly do. I continue to fight because you believe I can. I would consider myself unstable right now; it’s your words that keep my words flowing and as long as they flow, life goes on.

Whether I’ve met you or not, know you or not, I have love for you, for having faith, belief and love for me in some capacity.

You’re here, and that is meaningful to me.

PAGE 3.

(PRESENT DAY)

If you’re still here, thank you for reading, I truly appreciate you taking the time to hear my story.

This picks up a few days after my last update. I was @ my pharmacy picking up meds, the line was long, but I was using my walker. I had to go ‘in’ because I also needed other things. After several minutes my back was really hurting, a few more minutes go by & I’m restless / shaking, my knees start to give. I finally get to the counter & get my meds. I called my mom because I didn’t think I could make it out of the store.

(She left her phone at home).

I literally dragged myself out (idk how) of the store using just upper body strength. My legs wouldn’t work at all. I see my mom in the car & yell out… HELP! My body started to go into shock. She rushes to me as fast as she can, but I can no longer stand, I can’t get to the car 20 feet away.

Customers & Walgreens employees began helping me, trying to keep me up, but I fall to my knees & even that was too much for me. I couldn’t breathe; I started crying because the pain was so bad & because I was on commercial property, they had to call an ambulance.

I was given 100mcg of Fentanyl, but my heart rate was 146bpm. The med wore off as Fentanyl does very quickly. The hospital refused to give me an MRI; my lower back was in searing pain, down my left buttock & thigh, just burning fire (signs of a ruptured disc leaking spinal fluid onto a nerve). Unable to stand, screaming in pain, I was given a double dose of Dliaudid via injection, but my pain level tripled & then I was released.

When we got home, I still couldn’t stand (See videos below).

When I finally got inside, I passed out. It took hours just to get to my bedroom.

I had a colitis attack about an hour after I got to bed and left quite a long trail of blood and more dragging myself to the bathroom, screaming and bleeding the entire way.

(THE PAST WEEK)

I reluctantly decided to move forward with a lumbar epidural. :(

I reluctantly agreed to have a trigger point injection in my neck due to a recent MRI which showed that I have 2 more bulging discs (that makes 10 in total) and 2 bone spurs.

I reluctantly agreed to start Nucala. (A chemo-like) biologic injectafer infusion for eosinophilic asthma. My coughing is like bronchial pneumonia, it’s that bad! It’s been that bad for nearly a year! I’m just scared to death of this medication because of my reactions to similar ones that failed to work for my colitis. it’s also very painful, I need to bring 2 Epi-pens with me (just in case something happens) & I need to be monitored for 2 hours afterwards. This takes place tomorrow (Apr, 23rd). Wish me luck, I’m honestly scared to death!!!

Lastly, I saw my pcp on Mon. She went over lab results from last week. Her exact words to me: “How are you even conscious right now?” My iron levels were at a 6 (normal 13.5 - 17.5). Previously, I’ve been as low as 8. She wanted to send me right to the hospital, but I was due for & iron transfusion on Wed anyhow.

I knew I was anemic, but didn’t figure it was THAT bad, obviously I don’t need to get into just how much blood I’m losing. I keep track (like a diary) for my uc health & noticed a pattern that a couple weeks before needing iron, I start vomiting a lot. That’s been happening lately, but I just always deal with it.

When I went in for my iron transfusion on Wed, my iron was at a 4!!!!!

A FOUR!!!!

Which they screwed up. I’m supposed to get an IV which is left in so if I need iron, I don’t need to be stabbed twice! So what do they do…? Fing stabbed me twice! I was so pissed off about it (because it’s in my chart not to do this) I spoke to management and not only cleared it up hopefully for the future, but assured myself a private room from now on so I have a bathroom nearby. As one of my best friends used to say (whom we lost almost 17 years to the day 4-15-04 rip Gersh) “Squeaky wheel gets the grease*”.

Red blood cells carry oxygen throughout your body. When you don’t have enough red blood cells, your organs & brain don’t get enough oxygen and can’t work properly. This can have severe consequences and if too low, even death.

I have to have more iron next week and there’s talk about a blood transfusion.

The fatigue has been worsening & my Dr. said that between the thyroid issues, chronic fatigue syndrome & cluster of potential side effects from my 24 prescriptions that also being severely anemic is why I have so much trouble getting out of bed & why throughout the day I not only have wicked dizzy spells, no ability to concentrate or focus, but why my body just shuts down.

I get to areas during the day when I literally can’t keep my eyes open. It’s so unlike me. I wish I could just drink a giant tankard of adrenaline.

There’s so much inflammation in my body stemming from the ulcerative colitis, that every part of me is attacking myself.

I don’t want to get into it, but based on numbers in my labs over the past 2 months, I have to have an ultrasound on my kidneys because I’m teetering on potential kidney disease. She says if my numbers don’t improve… well… :(

Ulcerative colitis can (in severe cases like mine) not only cause anemia, check!

but also arthritis which I now have several forms of.

Asthma, check!

Blood clots, check!

Skin complications, check!

I’ve had hives & raised rashes & now needing a dozen procedures to have areas of skin removed that could be cancerous & require biopsies.

Kidney disease… (Not just due to inflammation, but all the meds you have to take) and if my next labs are comparable to the last two months… 😥

But going back to asthma…

I’m scared.

Tomorrow, I start Nucala. A chemo-like medication, injectafer infusion (and very painful!). Similar to what I went through with the colitis chemo treatments, and similar side effects; remember the side effects? Like not being able to bend my fingers?

I have to bring 2 Epi-pens with me and then be monitored for 2 hours afterwards.

Yeah… I’m scared, no… I’m terrified!

It’s so hard to fight when you’re so beaten up.

I’m a real mess.

And so, so tired…

Again, I apologize for this book of an entry, for the lack of updates, I’m in a real battle right now and I can barely lift my arms.

I just want to sleep forever… but, I really want to stop coughing first!

(Sigh.... )

In case I haven’t said it lately… I love you my friends! ❤️

Last updated April 23, 2021