MS? Infection? WHO CARES? Back in the Hospital

My new room was MUCH smaller and had a roommate, you know the kind, the ones who like to tell you their life story---never shut up. I never saw the woman's face. After about 15 minutes a nurse brought my Zanaflex to me. Though I was totally shocked and pleased that my spasticity hadn't gone through the roof, I was still concerned about the warning to never "stop taking." And without anyone seeming to give a damn about how whatever "infectious disease" I might have would be affecting my MS, I mean "infections" are one of those complications that can turn MS into an accomplice to murder. Yes, I was on my own again with dealing with my MS, even in a major hospital filled with doctors, pathetic, isn't it?





"Diane? Diane?" I had dozed off and awoken to the sight of at least 6 medical types surrounding my bed. One was taking my blood pressure, "Is the cuff malfunctioning?" He had that frowny look on his face. In front of me was a dude, doctor type, bending over me with his stethoscope.





"Diane, do you know where you are?" (Oh GIMME A BREAK, how can I answer this in the funniest way without being too snarky?) the nice doctor asked.





"Seattle. Swedish Hospital. Do you know where YOU are?" I replied with a smile. The guy with the blood pressure cuff was now hauling a machine to the opposite side of my bed and furiously attaching the cuff. Hmmm





"Do you know who the president is?" That doc was not giving up! Was this a trick question? Should I say Bush or Obama? I gave him a couple sentences about the election.





"What is your name?" (Oh STOP!!! SERIOUSLY?)


"Diane J Standiford. David Ida Adam Nancy Edward John Sam Tom Adam Ida Frank Ocean Robert David!" I raced that off hoping to end this silliness and calm the guy with the blood pressure cuff, and the extra men now entering the room--it was getting rather crowded.





"And who what is MY name?" (OK, here we go. I had never seen this doc before in my life! Good grief.)





"I have no idea."





"I'm Dr. Baxter." (Uh-oh...wait, by golly it WAS DR. Baxter. Too late, they were moving my bed.) I smiled timidly, "Right."





As they rolled me back to my ICU room, I was informed that my blood pressure had dropped to 60/ 70, something horrible like that. Also they could not wake me, and Dr. Baxter said I could no longer take any more Zanaflex. (Noooo!) "But, Dr. Baxter, you have to understand, I have been taking it for years and it does have a sedating effect, I tend to fall asleep, but I always wake up just fine and very alert."





"Diane, I'm afraid the next time you won't wake up at all. Your heart rate and blood pressure should never drop so low. Do you understand?"





Won't wake up at all, I heard that loud and clear. I never took Zanaflex again. Had my once beloved neurologist who dumped his practice in 2004 over-dosed me again, like he did with the Baclofen? My partner had, for years, complained that it was so scary to her how I dozed off and she couldn't wake me, but it lasted a precise amount of time and then I awoke alert as if I had never been asleep. When I missed a dose I became so rigid. Why was I so loose in the hospital going on my fourth day? Questions, but no neurologist to even explore them, and none ever has. They hear all this and move on as if I had said nothing at all. They don't know. Just another MS mystery for them, I guess.





Now I was really getting sick of the hospital and wanted to go home. The infectious doctor was in more often, um-ing and humph-ing, and grunting, saying few words, just looking worried. My partner called daily, had a friend haul her over snow and ice mounds to visit me (only brief visits in ICU) and she kept a cheery face on, but I knew she was scared, the info they were giving her was scary stuff, more than they were telling me, I guess. I wasn't scared. I felt fine and was ready to get home. I pleaded my case to Dr. Baxter, "You have found nothing wrong with me. I've stopped the Zanaflex, all my vital signs are perfect, how much longer can you KEEP me? I have no skin left to take blood from. They can barely get a good vein anymore. I'll get better at home, not here." He said the infectious doctor wouldn't release me. I demanded to speak to him.





He was a frowny type of man anyway, in my opinion. I got him. He couldn't find anything wrong and that bothered him when clearly something WAS wrong. "I just don't want to release you and have you back here in a few days." He wasn't budging.





"Well, I've given the cardiologist, the pulmonary guy, the vascular woman, and you four days and gallons of blood. I'm getting sick from BEING here now. Let me go. You can't keep me forever." He shook his head and walked out.





Next a physical therapist visited. Very sprite young man with a buddy intern, "Hi, Diane!" (ICK) "I'm here to make sure you can walk to the bathroom before we release you!" (sigh)





"So...no one mentioned to you that I have MS and can't walk?" (I told them as soon as I got to ER and they put a catheter in immediately. I was so dehydrated that I still hadn't had a bowel movement, WHICH didn't seem to bother a soul.)





"Uh, no," said PT Dr. Dumbass, oh, that's not nice, I'll call him Dr. TweedleDee, "But you will have to go to a nursing home if you can't walk to the toilet by yourself." (sigh X2)





"Are you FAMILIAR with MS?"





"Somewhat." (SOME WHAT??! SIGH and #$%^&$%^&)





"Well, I haven't walked in years. I use a power chair at home and use grab bars to transfer myself. I would LOVE to see you get me to walk." He was unfazed. "Just try walking to this chair," he said as he pulled a chair from across the room.





GAME ON. "Ok, and if I fall, you will catch me?"





With a laugh he replied, "Oh yes! I would never let you fall." TweedleDum just stood there looking a bit scared.





"OK. Help me up." I reached my hand out to him. He grabbed it and I pulled him, I swear to God, OUT OF HIS SHOES. He came flying towards me and I was afraid for a moment that he would fall and hurt himself. I released him back to his socked feet on the floor and said coolly, "You still think you have the strength to catch me if I start to fall?" His face was red as red Rover and his cohort had stepped way back. I was rolled back to the ICU, but not before having a bowel movement and no one answered my alarm for over 15 minutes. I sat in my own crap for awhile and bad on them. (THAT would happen again three times before I went home. Their excuse was: short handed due to snow')





That night in the ICU a new woman came in with a clip board, she looked doctorish. "Hello, Diane, I'm a physical therapist..." I interrupted with a dramatic Drama 101 flop to my back and deep sigh, ala roll of the eyes. "I know you have not had good luck with a physical therapist here, Dr. TweedleDum is new, I'm very sorry, but I've been doing this for 20 years and I have had many patients with MS." (AH-HA News travels fast.)





I perked up, "So you heard about him telling me I had to walk?" She laughed, "I heard that you pulled him out of his loafers!" I didn't laugh. (But I was rolling in the aisles on the inside!) "I'm here to ask what I can do to help you, just tell me." (ALRIGHT!)





"I need some ROMs." (Would she know what that meant? Range of Motion exercises?)


"Sure," she replied and we did those for 30 minutes. It was wonderful. I never saw her again.





Day 5. Dr. Baxter stopped by and he too had heard about how I pulled the PT out of his shoes. "Can I go home?" He pulled a chair up close to me. "We really can't find anything wrong with you, but Dr. Numbnuts (sorry, my bad, he was an ok guy, just wanted to help me, but I can't recall his name since I never saw him again.) is worried that if we let you go now you will get sick again." I reached out and laid my hand on his arm...tightly, "I understand that, but you must understand that love waits for me at home and I'm not going to get better in here." I looked into his eyes, he looked into mine and said, "Okay, I'll release you. Do you want me to call the cabulance to drive you home?" (WOO HOOOOO!!!) I shouted, "I LOVE you, Dr. Baxter!" and he laughed.





The cabulance arrived 4 hours later than it told me it would. Everyone was talking about how bad the Seattle streets were. Good thing that I lived just blocks from the hospital! My hair was never washed the entire time I was there and I was never bathed. (Those interns and/or nurses were too busy playing Gray's Anatomy!) My sheets were not changed while I was on any single bed. My pillow case was not changed. I did get a flu shot and EKG, two things I had on my TO DO List. I was never given a walker to stand with, laying flat the entire time except to eat. When the hospital doors were opened and my cabulance sat ahead of me---WOW. It looked like a snow/ice bomb had exploded outside.

Very little traffic was moving and all I could see was snow and ice, on trees, cars, people, buildings. All I had on me was the hospital gown and a blanket. Once inside the cabulance (a private pay ambulance service $600 for my 7 or 9 block ride) it was quite a ride. The streets were mostly closed, ice chunks littered the snowy streets, it felt like we were driving over a rock quarry. And we were moving about 3MPH with constant starting and stopping, no traffic lights were working, the snow was still coming down and it took 30 minutes to make it to my apartment building's front entrance. I thought the HARD part was over.

My building was four stories high with two long sets of steps in front and a long, winding, wheelchair ramp. You could not see either. I had to tell the drivers what was under the snow. First they tried carrying the gurney straight up the stairs from the middle of the street where they had parked. Nope. Snow was too deep for them to get any footing and the larger fellow started shouting at the little fellow. This went on for a good five minutes. I was cold under nothing but a blanket that had come off most of me. "Try the ramp!" I shouted, I think we all shouted because the wind was loud. Never had Seattle central seen a snow storm like this, not in many years anyway, not with so much thick ICE. The big guy decided to go for the ramp. He tried to push me by himself, the little guy was trying to forge a foot path towards the front door.

Push as a he could, my gurney was stuck. After all I had been through I had a sinking feeling that I might die right there. I was now mid-ramp, half way to 2nd level when I heard a loud cracking sound. I looked up (my best view) and there above me was a HUGE pointed icicle just ready to come down. The big guy heard and saw too. He pushed and pushed and grunted and shouted moans of pain, but I wasn't budging. Sigh. And, BRRR.

To be continued...