Hospitals, Unfamiliar Doctors, and Fibromyalgia: What’s Your Experience?

Some of the fireworks I missed while in the hospital.

I just had the most awful holiday weekend EVER, thanks to my fibromyalgia, not having had insurance in two years, and the prejudice in the medical field against those living with chronic pain.

I got up last Friday(July 2) to start getting ready for work, and started passing huge amounts of fresh, liquid (and very red) blood. Naturally enough, that scared the hell out of me, and when it happened for the fourth time in an hour-and-a-half, I called in sick and headed to the emergency room at our local hospital. Since I wasn’t sure if it was related to one of my pre-existing conditions, and the insurance through my husband’s job doesn’t cover those for another couple of weeks (they have one of those clauses that says they won’t pay claims related to anything that was diagnosed before your coverage started for the first twelve months,) I went to the charity/teaching hospital, just in case it turned out not to be covered.

My first mistake was having the hubby drop me off, rather than calling an ambulance, assuming that even as a walk-in patient I would be seen within a reasonable length of time. (I guessed that it would take three to four hours to see a doctor, since I was bleeding, but it wasn’t VISIBLE. Boy was I ever wrong.) I arrived at the ER at approximately 2 PM Friday afternoon, and was FINALLY moved to a treatment room at 3 AM Saturday morning. That’s THIRTEEN hours of sitting in the waiting room, hoping I wouldn’t bleed to death before they got around to seeing me and watching people who came in after I did get treated and released because they didn’t need a “trauma room.”

(Thank heavens I didn’t let the hubby stay with me, after the first few hours, he would have gotten so angry and vocal they would have at least had him ejected, and maybe even arrested.)

Then, around 5:30, they’re in the treatment room telling me I need to be admitted, while someone else is on the phone with the hubby, telling him that I was DISCHARGED at 3:01. Not long after that, the nurse brings him to the room and tells me I need to calm him down because he was frantic that they “lost” me for several hours. Of course, by this point I’m wondering if this place is even safe for me to stay in, but they’re telling me I’m anemic from the blood loss (13 gm/dl of hemoglobin) and need a couple of tests to figure out WHERE the blood is coming from and why, and it will be a several month wait if they schedule me as an outpatient . . .(which I believed, since one of the roomies waited almost a year to get the same test.)

They finally moved me into a room around 4pm, got me attached to heart monitors and oxygen sensors and IVs, brought me my first food since McDonalds at about midnight the night before, and then moved me to Intermediate Care. (So they had to unhook everything except the IV, move me, and reconnect it all.)

My last dose of ibuprofen was about noon on Friday, so by this point my pain levels are pretty high and being made worse by caffeine withdrawal headaches, and my last smoke had been about 3 hours earlier (I escaped from the ER for a cigarette shortly before they moved me upstairs.) From the time I hit Intermediate Care on Saturday evening I was allowed nothing except water and fruit juice, I received no pain medication, and was unable to escape for a cigarette because of all the wires. By Sunday, the forced nicotine withdrawal was causing my heartrate to drop below 5o every time I lowered the head of the bed so I could sleep (and it took them 2 days to figure it out and put me on nicotine patches so they could keep the heartrate where it was supposed to be.)

The really ironic thing is that when they admitted me, they gave me a brochure talking about how important it is to manage chronic pain to prevent it getting even worse from lack of treatment. Then, they refused to give me anything to manage it WITH.

Saturday night they started me on that horrible stuff that’s supposed to clean out your digestive system so they can see what they need to, and Sunday morning they did an endoscopy, which came back clean. Monday afternoon I was moved to the Telemetry section, which meant I was no longer wired to the wall (instead, I got to wear a radio transmitter hooked to NEW contacts (my third set) and I finally managed to escape for a smoke . . . (but still no coffee, and still no medication.)

That night, I got to drink another gallon of the GoLytely to clean things out for the “roto rooter” procedure the next morning, and they hooked me up to a bag of dextrose to keep my blood sugar levels up. (Did you know that the stuff they make you drink before a colonoscopy contains ANTIFREEZE!? They feed you POISON to clean out your system! Honest to goodness, one of the ingredients on the container is polyethelene glycol.) About 20 minutes after the IV was reconnected, I noticed that there was a wet spot on the sheet under my hand, and discovered that the IV had infiltrated.

(Oh, joy! We got to remove the original IV and find a new vein that could be hooked up, which, after 4 days of taking blood several times a day, was NOT easy.)

After being awake all night drinking the horrible stuff, I finally got to have my procedure Tuesday morning (hurrah – I only have diverticulitis, instead of some of the awful things that COULD have been wrong with me!) and once they got me back to my room, they said I could finally go home.

The discharge procedures only took 4 or 5 hours, and they actually FED me while I waited (that limp, wilted lettuce and cold, tasteless chicken was the best tasting thing I’ve eaten in WEEKS . . .) The only information I was given about how to handle my new diagnosis was “eat a high fiber diet, and stop taking ibuprofen,” and they were actually going to send me home with nothing to replace the ibuprofen with. THAT’S when I found out that the reason they’d been refusing to give me any pain medication was because they had ASSUMED that my fibromyalgia and rheumatoid arthritis were self-diagnosed, and that I’d never been in treatment for them. (Ummmm, isn’t that one of those things you’re supposed to ASK about??)

Once the doctor finally asked me, and I told him who I’d been seeing when I lost my insurance, he agreed to give me a prescription for something to replace the ibuprofen with. We went to get it filled as soon as I got home, only to find out that he’d written it for 50mg Ultram tablets (which make me woozy, but don’t do much more;) and hadn’t bothered to write in the number of pills so the pharmacy couldn’t fill it. (AND the phone number he wrote on the script was “not in service” so we couldn’t even get the problem corrected!)

(I actually did manage to get the script filled later that night, at a different pharmacy, but we’ll just leave out HOW that happened. LOL)

So that’s the way I spent my holiday weekend, and why there was a ten day gap in posts. I got home Tuesday night after 5 miserable days in the hospital, covered in bruises and adhesive, with pain levels holding steady at a 9 or 9.5, and a left hand that barely worked because of the IV infiltrating. I got to miss the big party our roommates have been having for the 4th for the last 25 years, miss the fireworks, and miss out on Jody’s scrumptious ribs and all the yummy food that the guests bring to go with them. (Oh, let’s not forget losing a week’s pay myself, and hubby losing 3 days.) Fun, fun, fun!

If I start bleeding again, it’s going to take some damn fast talking on someone’s part to get me back to the hospital . . . I’d be really tempted to just stay home and bleed out. At least that’s a peaceful, painless way to go, and I’d still be able to take SOME kind of pain medication, even though it’s nearly useless. (After a week of taking the Ultracet religiously, the pain levels are down to an 8.5 or 9, from a 9 to 9.5. Not much of a change, in my opinion.)

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Chronic pain and illness has negative psychological effects, not just physical
When pain becomes chronic