I have to skip ahead without a proper conclusion to my last entry, but yesterday was just too much!

If you want an “I can’t believe what you just went through” story… please read on.

When my lower back spasms, it’s usually my lower right. I fall to the floor screaming in pain. With meds and a bit of help, things generally get better over the next few days.

The last 4 days, my lower back has been in spasm, but it was different. Same kind of pain, but moderate at first. The next day, more pain, including my left buttock. Day three, even more pain and the back of my left thigh joins the fun. That night, the pain is a 9/10. I got no sleep, screaming in pain at every motion and turn. Day 4, all day was wretched! So I go to my mom… “I think I might have to go to urgent care”.

I did everything I could to avoid the hospital. I went to urgent care, dragging myself to the counter, then to a chair. I was in soo much pain, that I put my mask on inside out.

When the nurse called me, I said: “I think I might need a wheelchair”. Having sat down and waiting 15 minutes only made things worse, and I didn’t think I’d be able to stand.

They helped me into the chair, but not without me screaming and crying in pain!

Then I find out that their x-ray machine was down, and the Dr. said I needed imaging, preferably an MRI. I was so exhausted by this point, and I did NOT want to go to the hospital (for many reasons) but namely because I’m immune-compromised, and I have respiratory disease. I don’t want the increased risk of exposure to Covid-19. The next thing I know… I’m in an ambulance being rushed to the hospital!

Then I get to the hospital, and I have an ulcerative colitis attack minutes after they get me in a wheelchair. I can’t move, and I didn’t make it to the bathroom in time.

Then I get another Colitis attack minutes later. I can’t stand, I can’t walk… I get some help from a nurse, but it’s too late… again! Then when I get to the toilet, the seat is covered in urine. The nurse wipes it down with a paper towel, that’s all. No disinfectant or cleaning solution of any kind! I have no choice but to sit. Freaking disgusting!!!

After which, getting back into the wheelchair, more screaming and crying in pain.

Now I’m in triage. There are 12 chairs and 7 people in this cramped room. We are still in a pandemic, yes? No one was (or could) social distance at all. We’re all about 3 feet apart (MAX). There are sick people all around me!!! Coughing, sneezing, sleeping… plus there are patients who come and go and they walk right past you, inches away!

They drew a ton of blood into these beaker like things. It looked like they were refilling bottles for a vampire run bar! Then they did an EKG, in case something else is causing the pain like pancreatitis (which I’ve had before).

I can’t sit or stand for more than 5 minutes without excruciating pain, and I’ve been in the waiting room and triage now for 5 hours! I Still haven’t seen a Dr.

Then, I had another uc attack, I called out many times, but my voice is all scratchy and hoarse now; no one came or was around to help me (and the Emergency room really wasn’t ‘that‘ busy. I dragged myself to the bathroom, muffling my screams as best I could, out of respect for the other patients. One of the other ER patients that was in a wheelchair, got up and opened the bathroom door for me. She looked like she was in pain. Once again… no one cleaned up after someone had vomited all over the toilet and floor. WTH?!?! EVERY F*🤬CKING TIME!!! (Pardon my French). Who knows what was wrong with that person!

They frequently took my blood pressure and pulse. My blood pressure was always around 94 or 96/60 and my resting heart rate averaged 120bpm. They kept changing the finger they put the oximeter on.

I couldn’t make it to another bathroom on my own, in fact, I couldn’t get out of the bathroom because I didn’t have the strength or leverage to pull the door open. Nope, not handicap friendly!!! I kept trying, and was calling for help. There was no string to pull for aid, so the same wheelchair patient again came to my rescue.

Over 5 hours in ER! I’m in so much more pain now than I was when I showed up (in an ambulance!) I showed up with lower back pain extending down past my buttock and into the back of my left thigh. Now, that pain was worse. My mid-back was hurting severely (burning like liquid fire!) as well as my upper left shoulder to the point of not being able to use my left arm at all. I just couldn’t sit any longer, so I was forced to check myself out of the hospital. I didn’t want to, I wanted answers, but I had no choice, I physically could not tolerate it any longer. I was dying in that chair!

But, my uc pains were getting worse. I wasn’t allowed to take my meds (which I had with me). I couldn’t even drink water. I was several hours past when I should have taken a Dilaudid, so my uc pain was worsening dramatically. I was gonna be sick no matter where I was. I begged for a nurse to take me to a clean bathroom. I said it was an emergency. She continued to work on a computer behind a desk.

I said: I’m not joking, there’s going to be an accident right here, if I don’t get to a bathroom in seconds!

She then wheels me to a bathroom. She opens the door and wheels me inside. It just barely fits in the stall. She closes the door and I’m in there for about 20 minutes having a colitis attack.

I scream in pain standing up and getting dressed, trying to lift my jeans with one hand while trying to hold myself up with the other. I was physically fatigued and emotionally spent. I lean up against a wall to get to the sink and dispense some liquid soap, but the sink doesn’t work! (see video - Again, I apologize for my language, this was just before I checked myself out, I was very unhappy by this point). So now I have soapy hands that I can’t wash.

I pull the string for help. When The nurse arrived, the door was locked. I never even touched the door, how the hell was it locked?

I can’t get to the door. I’m wedged between the wall, the sink and the wheelchair in its locked position. It took 6 or 7 minutes for them to get the door open. By now, I was dizzy and feeling faint.

Ugh… my voice is raw from all the screaming.

I said: “I don’t want to, but the hospital is forcing me to check myself out. I am physically incapable of sitting any longer, I need to lay down”. She said: “You want to leave?” I said: “No, but I don’t have a choice. You don’t seem to understand. I NEED a bed. I don’t care if it’s in the morgue, but I need a bed. If one still isn’t available, I have no choice but to leave. At least at home, I have a bed and a clean toilet and that’s all I care about right now. My back is screaming in pain! I would lay down on the floor right now if you’d let me”.

On the way back to ER, we passed two empty rooms on my left with two readied beds. No one in the ER by this time was there longer than me, but we walked right by the rooms, and she put me right back in the waiting area, so I said: “That’s it, I’m leaving” and I checked myself out.

When the nurse wheels me out to my mom’s car after she pulled around. I can’t get in without once again… Screaming and crying. I lost count how many times today, I think 4 when I had tears streaming down my face. It was also freezing outside, 29 degrees f and I couldn’t lift my arms to get my jacket on.

I never learned anything. I don’t know what’s wrong. I never saw a Dr. and I never got the results of those tests, and I don’t know what’s going to happen now.

I’m definitely going to report my experience though. A grievance with the hospital, maybe I’ll go to the media. Please feel free to offer suggestions or if there’s anything you can do to help me.

Not all hospitals are good ones, but I feel like I’m a million miles away from one. I HATE living here!!! ☹️

I was using my heating pad at 145 degrees. It feels good and usually after a few hours, things start to relax and I can move a bit, but that’s not the case now. The pain keeps getting worse, I don’t understand how that’s possible! So, I’m icing which hurts (laying on a bag of sharp ice. When I get uc attacks and have to get up, initially I feel better (or numb from the cold is a better way to put it) but when I get up from the toilet, the pain is ten-fold! It’s nearly impossible to do what we all need to do in this situation. I can’t bend or twist and have limited motion with my arms, and I can’t help but scream!

I need to be examined, but I can’t go through ER. I need to figure something out.

I’m going to try and get in touch with the urgent care Dr. who got the ambulance for me and see if she can just write up an mri script so I can go to the hospital or an imagining center and just get it done. If she does, then it’s an insurance issue and Medicaid is not very compliant. 😕

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One more time, I apologize for my language in the video. I was in so much pain, so frustrated after everything; I’m truly sorry that I couldn’t compose myself. You don’t have to watch it if you don’t want.

And that’s how I spent the last night of Chanukah.

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ADDENDUM: Just added this. Home from the hospital. (PG)

health #hospital #healthcare #gofundme #IBD

Last updated December 20, 2020