The Results are Shocking & Predictable in General Mental Anesthesia

If you want TMI… you have found it, be forewarned.

I just can’t find any consistency.

I ‘want’ to write and keep in touch with you all as well as my family and real life friends, but life just keeps beating me down; asphyxiating me; silencing me.

Since my last post, I’ve been sick. Sore throat for about 10 days where I couldn’t talk at all, fever, then bronchitis. Try coughing and sneezing with 2 crushed vertebrae… bet you can’t do it without crying…

Oh and speaking of my broken back, I went over the results of my MRI recently with a back surgeon. Not only do I have the 2 crushed vertebrae (T-11 & T-12) but I have multiple herniated AND bulging discs (pinching nerves) also an area of inflamed nerves that is separate. I have degenerative disc disease (spondylosis (arthritis of the spine) and found out that I have (SEVERAL) fractures in my spine from my upper back / neck all the way down to my tailbone that are older which I never knew about because without insurance and always living paycheck to paycheck… whenever I was in pain or hurting, no matter how bad it was, I just kept going. I didn’t take days off, I pushed through and kept working; kept lifting and twisting and doing all the things I shouldn’t have done because I needed to keep a roof over my head, so I could never afford to take care of myself.

How many gigs… commercials, films, tv shows… how many times have I carried and set up equipment, sandbags, lighting rigs; had cameras in my hand and on my shoulder while I had a broken back over the years and never knew it because I just dealt with the pain?

Theatre and prop making (sometimes literally incapable of getting up off the floor).

Not to mention the 100’s of volunteer hours filming with the EWA (non-profit org in the everglades) carrying tripods and gear for miles through thick woods and muck.

Plus all the times I’ve moved (dozens over the past 10 years) and helped my mother move doing all that uhaul shit by myself. The lifting and carrying of 1000’s of boxes and furniture NEVER once getting any help at all. I recall many times screaming out in pain and being unable to walk afterwards (one time for months afterwards).

Think about that for a minute.

For my followers: Remember this, my Semg test (Paraspinal Surface Electromyography) that records the electrical impulses on the nerves in the back while at rest which shows in laymans terms (pain signals). The one on the left is considered the base (or normal) what we should all look like. The one on the right is my result.

600x and 900x above average in some areas, it’s unreal, yet VERY real because I feel it every day!

During my surgical consultation; apparently I’m not a candidate for the multiple kyphoplasty surgery for 2 reasons.

1. I’m too young.
2. As of the imaging done 7 weeks weeks ago; the broken pieces are touching so theoretically they should heal on their own. I say theoretically because every time I move they shift slightly, and YES!!! It hurts!!!

Officially, I’ve lost 2 inches in height that I’ll never get back. Words can’t describe how heartbroken this makes me.

They suggest a series of epidurals, but I’m not happy about it.

1. Epidurals only have a 50% chance of even working.
2. “If” it works; it just provides ‘temporary’ pain relief for (maybe) 2 months, and not complete pain relief at that.

I have an appointment to be fitted with a back brace to limit my range of motion to help the bones heal. A boa brace I believe it’s called. This is a cause of great anxiety because my ulcerative colitis is so severe that the fabric of a light t-shirt or a bed sheet hurts me, ANYTHING touching my stomach, let alone a fitted brace.

I was also (this past Friday, and I was absolutely dreading it!!!!!!!!!!!) had an appointment to have a bone scan done. The purpose is to see if the multiple fractures are still touching or out of alignment. I’m dreading it because from an ulcerative colitis perspective, I’m sick 15+ times a day. I had to be out for several hours the other day going to Dr to Dr etc… and I had several close calls. I HAVE to be near a bathroom at all times!

1. I can’t run or move quickly and I have mere seconds to get to one when the urge strikes out of the blue.
2. I can’t dress myself without help, so… if I don’t make it, I’m in trouble. It’s hard enough at home.
3. The appointment was at 9am which means I would have to stay up all night on Thursday because the colitis is always at its worst the first half of every day.
4. I need to get a special dye injected (and these needles are thick and the ones that have trouble finding a vein. A normal blood test isn’t bad, but these contrast needles are a constant problem… in / out… in/out… in/out… I’m not looking forward to this!
5. After the dye injection, I need to wait 3 hours before I can get the scan done. Three hours away from home, away from a bathroom that I know will be available. Three hours of pure ulcerative colitis horrific agony!!!

I’m already extremely anxious (as if you couldn’t tell).

Now why is all of that in the past tense? Because I was unable to have the bone scan since I was in the hospital AGAIN!!! I’m going to have to reschedule, maybe this week.

This time, not only for my ulcerative colitis which has furiously overtaken my life, but the other night I thought I saw blood in my urine plus I had a lot of extreme pain below my waist and toward my sides. The following morning, my pee was almost ALL BLOOD! I had no choice but go to the emergency room.

Every breath I took was a moan in pain, I was fearful that it was another kidney stone, but tests revealed that it wasn’t.

Now I have scary amounts of blood coming out of both ends… My UA (urine sample) looked like cranberry juice! Each time I pee it’s like pissing needles! Sitting and getting up and walking around feeling like someone is piercing me there with needles… I’m in absolute fucking hell!!!!!

Had an impromptu rectal exam as well (it was like a prostate exam) except the Dr. was NOT gentle, with all the inflammation, pain and pressure & no lube it was like she was digging for gold or something! It was a G-Ddamn Nightmare!!!!!!

They released me, treating it as if it’s a uti, with antibiotics and pain meds, they called my GI who now wants to see me immediately because the ulcerative colitis at this severity could be affecting my kidneys, that could be the problem. I have that appointment coming up this Friday… as sick as I am… I may be going right back in the hospital.

Aside from the pain, the nausea is unbearable! Partially because of meds, but mostly the UC. Just 24/7 of wanting to vomit. I hope I’m not pregnant, I just don’t have the womb for that sort of thing!

All kidding aside, I’m actually considering taking a bank loan (I doubt I’d even get approved) to go see my holistic Dr. (Dr. Mackey). The gofundme page is still active (https://www.gofundme.com/jayeeryk) and has helped me survive this long, but being forced to pay for all these GI visits, the meds and the blood clots in my lungs… I just couldn’t put the funds towards the goal. I would have died otherwise, and Dr. Mackey can’t help me if I’m dead so I’m extremely grateful. Kind of at a crossroads, I desperately need help and I’m just not getting it though traditional channels. Now that I just got Medicaid, I’m no longer applicable for financial aid to get the chemo treatments my GI wants me on. Dr. Mackey doesn’t accept insurance, but she’s a hell of a lot cheaper than the chemo which costs $14,000/month. Comparatively, I could see her 3x for almost half the cost (less if I didn’t have to travel) and that would put me in a literal REMISSION from ulcerative colitis! The next best thing to a cure (which doesn’t exist).

I don’t know what to do, I really don’t. I’m confused, I’m disoriented, I’m severely fatigued and wickedly depressed. I can’t eat, I’ve lost over 20lbs in the past month, I feel so weak mentally and physically. I miss working, I miss using my brain, I miss working out and exercising.

This first week of December is IBD AWARENESS WEEK. I aim to post a few times about it because in the 26+ years that I’ve suffered with it, still very little is known and few advancements in the treatment of it has occurred.

It is so much more than you think and I am living proof of its Hell!

Last updated December 06, 2018