Upon arrival the spasticity in my legs was unbearable from being in one position on the gurney. I asked them to please loosen the straps so that I could shift onto my side.
They wheeled me into Piedmont’s ER and the female paramedic listened as I told her how long and hard the past year had been and that I feared for the future. She held my hand until the staff was ready to bring me into one of the ER rooms. I was shaking a little, not knowing what would become of me but knowing it was serious.
The waiting seemed interminable. The ER doctor was a young slim man with a long neck and dark curly hair and a rather loud voice. Nurses and various other staff came in and out of the room asking me questions, checking my legs to look at the weakness in them, pushing, pulling, the usual routine. There were so many I couldn’t keep track, but they were on high alert.
My whole body had become hyperflexive; not just my limbs anymore. When they checked reflexes with the hammer even the opposite leg or arm jumped!
When they called in the neurologist on call and she and her PA both did the same exam I could tell she had not seen anything like it before. She was fairly young with medium length brown hair parted in the middle and introduced herself as Dr. Heidi Woessner. She was easy to talk to and non-assuming and told me she’d run some tests and be back in awhile to give me some recommendations.
She returned sometime later and despite her admission that she wasn’t sure what was going on I felt as though she would do her best to find out. She and her young PA told me they were going to try to speed the process along of finding out what was wrong with me. They decided to admit me on their neuro unit there at Piedmont. I breathed a sigh of relief that finally there would be some forward movement in the process that had up until then been stuck.
The challenge was that the hospital was full and so I had to wait in the ER until a bed opened up. I waited from about 5 AM until 4 PM to get a room on the 6th floor. Medications had been documented in my chart but had not shown up yet in the system and I was getting into quite alot of pain due to all the spasticity.
They told me that my doctors at Emory wouldn’t know I’d been diverted. I had my laptop with me but felt so awful it was awhile before I felt up to plugging it in to start notifying people. I needed to tell my son and a few others first; those who would be most able to help and those in the autoimmune community who cared how I was doing. I knew I needed to get someone to go by the house and take care of my pets and possibly bring me some things like clean underwear.
The man who does home repairs on my house had told me once if I ever needed anything to call him but as it turned out he could do nothing when the time came, as his own father was in the same shape.
My son had to take a bus up from Athens, GA. to Atlanta one day (similar to Greyhound because there is no linkage with the public transit system) and he spent the last $20.00 he had. None of his girlfriends’ family would bring him in their car. My son suffers from a disability himself. He cannot drive now because of a benign brain tumor called a D-Net made of excess neural tissue that presses on areas of the brain causing seizures on a daily basis; mostly Complex Partial but he has some Grand Mal seizures too.
His phone is often cut off for non-payment and I have my suspicions that he is just too generous with his money, although her income is higher than his. He always seems to be the one with the short end of the stick in that relationship. I hate to see him in that situation but can only wait for it to become intolerable enough for him to draw his own conclusion however long it takes.
They did one whopping MRI of the brain and spinal cord, and a spinal tap, numerous blood tests, etc.
The day of the MRI I suddenly had to pee not knowing it was going to take nearly 2 hours because they were actually doing 3 or 4 scans at once. They got a bedpan and lifted me up off the table and somehow that position with their hands on my spine caused me to jerk spastically backwards. It was kind of comical, and I couldn’t help but laugh saying one day this would make quite a story to tell my grandchildren. The whole thing was rather funny and I had to try hard to keep from laughing while I was in the machine, as they wouldn’t pull my pants back up after my using the bedpan for fear I might have to pee again. They just put a pad under me and covered me with a blanket.
I joked that I hoped I would not break their expensive machine, as the thing seemed to be overheating with the length of time I was in there. I think except for one area the pictures for the most part came out pretty clear.
I found that I got rather tickled after that at random times, even when I felt irritated, and did not know why. It was as if something was broken in my brain that I couldn’t quite explain and my emotions were all over the place. I alternated with periods of crying, but mostly laughing. It might be psuedobulbar affect, but I’m not entirely sure.
Then there was the time the aid was supposed to help me take a sponge bath at the sink and left me there and never came back. I tried to figure out a way to wash my feet, as I was having trouble reaching down. I finally just grabbed hold of my legs and lifted them into the sink. When the nurse came in she looked at me as if I were a naughty child, looking at me with a mixture of fear and disdain. “What are you doing!” she admonished as though I’d committed some awful faux pas . “I’m washing my feet”, I replied matter-of-factly. “I couldn’t reach them on the floor so I had to just be creative” I said, laughing. Something had to be done to break the tension around there, as you could have cut it with a knife.
“That’s not creative!” she said shooting me that look of disapproval again.
“Yes it is” I replied. “Come on, don’t you ever have days when you’re in a silly mood and joke around with your friends? You have to have fun sometimes”. The nurse remained stone-faced. “No”, she responded, “I don’t. You’re not right” she said shaking her head gravely. “You’re just not right.”
There was a blond-haired physical therapist that for all the world reminded me of Stewart Smalley, the guy on Saturday Night Live who was in that skit where he was always looking in the mirror saying “I’m smart enough, I’m good enough, and doggoneit people like me!” He was a bit irritating so I sent him away as I was never really sure what he wanted me to do, but whatever it was it seemed he was looking for a bone of contention and that in itself was tiring.
Dr. Woessner, guardian angel that she was had left for the Thanksgiving holiday, and her colleague took over the following week, so despite her best intentions things went downhill from that point on. Luckily her order for Morphine and Ativan to get me through the EMG was honored, although the first guy who was scheduled to do it kept unscheduling it and reminding each day’s attending that I’d unscheduled it the first time, as if to make some oppositional statement.
I was relieved when it finally was set that it was the other guy (who was much kinder and more mature). If you’re going to have needles jabbed into your muscles and your nerves shocked it’s probably a good idea that the one doing it isn’t holding a grudge, LOL. This test is a bit too reminiscent of a Cuban prison as it is.
I remember that day the young tech who was supposed to be there to offer comfort sat in the chair across the room staring uncomfortably at the floor. He’d worked there 23 years although I don’t know how someone stands a job like that witnessing that which is done to patients day in and day out for that length of time without becoming either hardened or turning into a puddle of jello.
I called over to him “Hey dude! Please! Come on over here and hold my hand,” to which he sheepishly complied. At the worst of it I let out a rather guttural yelp followed by a few rapid breaths (I have never been able to scream normally), and I think his hand sweated worse than mine did. Oddly I found that comforting, as it let me know that he still had empathy even after working in a place like that all those years.
The man administering the test only did a few areas on the left side of the body and seemed a little sloppy about it. Although maybe at least in part he intended to spare me, he failed to document the rate, so I don’t know if the test was sufficient enough to be valid. Since I am unable to point my toes he had to do it for me. He quickly ruled out a bunch of stuff and it seemed it was over in about 20 minutes, tops. He saw something but said he didn’t know what it was (story of my life).
My vital signs were all over the map and I found that there was one particular male nurse who about 3 days prior to my discharge seemed to want to manipulate the readings until it was somewhat more normal before having an aid record it. When I realized what he was doing I called him on it and he stopped. It was strange to say the least!
On the day of my discharge the attending told me that Administration had been on his back for a week to discharge me because I needed a specialist in movement disorders and they felt ill-equipped to provide more than supportive care. He said I really needed to go somewhere like the Mayo Clinic, John’s Hopkins, etc. I don’t disagree, but I was by no means well enough to leave the hospital and he told me that they couldn’t do a direct transfer unless I were going to die within 72 hours. He told me he hadn’t had any luck with that for the past 13 years.
The conundrum about testing he said was that at Piedmont hospital if you have fasciculations in your tongue they give the ALS diagnosis hands down even without the tests but if they are in another body part (such as my foot as it was witnessed by the man who did my EMG before he even stuck the first needle in) they brush that aside, as he says they are not a hospital qualified really to diagnose such things. I don’t want to hate my body but now I do as it seems not to be cooperating in getting the necessary information so I can do something about these symptoms.
Since it was a Saturday and I had no way to get orders written by my Emory doctors until Monday I asked him if he’d write the Saline fluid order for home healthcare to start an IV with the next day. He said he would since he acknowledged they’d determined my dysautonomia to be chronic now and in need of continuous infusion. At least it was keeping it somewhat stable although it didn’t cure it.
When the time came and my paperwork had been processed he went back on his word and told the nurses a different story. People were rushing in and out of the room and just signing a release to get my records sent to my outpatient doctors was difficult. I had to call the social worker 3 times to prevent the nurse assigned that shift, Carolina from dropping the paper on the table and bolting from the room. There was some strange energy going on to say the least! I stared her in the eye and told her I knew and she knew this was wrong and that this should have been done the proper way so that I’d be safe once I got home over the remainder of the weekend. She averted her eyes, knowing in her heart I was right. They intended to send me back to be Emory’s problem. Little did I know that Emory had plans of their own to deflect responsibility. I was only just beginning to understand the political games big healthcare systems play using patients as pawns.
Transportation was on their way to come with stretcher in tow. On the dry erase board on the wall where all the days’ schedule was posted I scrawled a message to Dr. Woessner which read “Thank you, Dr. Woessner, my Angel in the Outfield. :-)” If I could I would have her as my neurologist on the outside, but she only works inpatient. I have never met a neurologist as kind and caring and doubt I ever will again. The attending who discharged me made a comment once that I held her in high regard (as if I shouldn’t), but then why wouldn’t I? She’d always treated me with the utmost respect, compassion, and dignity.
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