About a month ago I simply leaned over the claw foot tub to move the shampoo bottles off of the windowsill. Perhaps my hips weren't squarely aligned, perhaps I didn't counterbalance very well, but I felt a snap of sorts, sharp pain and I literally went down in agony. Somehow I made it to the bed moaning, groaning, and gasping. I stayed lying prone for 5 hours on heat, ice, Advil, and Tylenol debating if an ER visit was warranted. I tried to get out of bed twice to pee. I fell because my legs couldn't support my weight with the pain the first time. The second time J lifted me there and I almost passed out with the pain so I hung out on the floor of the bathroom for about a half hour. I didn't want to be labeled as a drug seeker in the ER or as a drama queen. I've been on the other side of the ER and the word "cynical" doesn't even begin to describe how the ER caretakers view the world. Finally I gave in and told J I needed to go to the hospital.
He pretty much carried my weight as I hung onto his neck and he guided me to the car, 8:00 on a Saturday night. The car ride was excruciating and it was a joke trying to get me into a wheelchair to transport me into the triage area of the ER. I looked miserable and yet I could see the looks of disbelief on the nurses faces as they checked me in. I bought myself a MRI, a semi-private room in the ER, and concoctions of pills to try and manage the pain. When they took me to the MRI and the tech tried to move me I grabbed her so hard in my pain I left bruises. "Gee, I don't think your pain is managed, "was all she could say rubbing her arms while I apologized profusely. J and I spent a romantic night in the ER, a hot Saturday date if you will, listening to my roommates come and go. First a man with an abscess in his ass, unsure if it was caused by a bug bite or a sliver from his porch. Then we had two girls from a rugby game with a broken nose and needing stitches. The amount of narcotics given to me should have snowed any other person into respiratory distress, but I just sat there able to carry on a normal conversation and keep awake. This told them how high my pain threshold was and how much pain I was in. Clearly I wasn't going to just get a script of vicodin and sent on my way. By 3:00 in the morning they decided to admit me. It was just going to be for a day or two to get my pain under control.
I was moved upstairs and shared a room with a little old woman who did not speak English and was clearly scared. She snored while she slept and had conversations in her native tongue. I asked for ear plugs on the second night and somehow they hunted them
down. But when a private room came available, without asking, they just moved me. I was so grateful, but I felt bad for the woman. Did she think I was abandoning her? She was probably happy to get the room to herself. My one or two days of pain control turned into 11. I was on the hospitalists team (read: not interesting enough of a case to be assigned to a team of residents and interns). This meant I got "real" doctors, not those in training, but I also got their egos. Every 12 hours a new doc would come on service and switch up my meds because only they knew what they were doing. By the 3rd day my husband had enough. His frustration limits had been hit and he couldn't watch me be under medicated for my pain control because they were all afraid. He began to do the math himself and advocating for certain orders. The minute he got involved I began to improve. You can see his math to help educate the attendings on how to do proper pain control.J came nightly and we ordered two dinner trays so we could eat together and get caught up on the day. Often he would speak to the hospitalist and confirm the plan of care. He would always bring chocolate so I could have something to offer the staff when they came into my room. I have to say, environmental services and the food service people were so greatly appreciative and I sometimes would get an extra dessert, a shout out hello from them passing in the hall w
ay, and my room looked nice. One hospitalist stopped by to eat 4-5 pieces of candy as "lunch" in between several admits waiting for her in the ER. And once a night nurse and I had a shared candy break and get to know you session during my 2:00 AM meds. Chocolate was a brilliant plan. J also brought a few gifts from home: a pumpkin (to remind me its Fall), flowers, aster (again, its Fall), a stuffed animal dog toy of a squirrel (from Edgar, really for Edgar when I came home), cookies, truffles (beginning the staff quest for more chocolate). J had a hard time giving up control, realizing that he wasn't the doctor writing orders and then watching his wife struggle with her pain. It was a humbling journey. In the end, we found out that I have a herniated disc of L5/S1, which is essentially right near your sacrum. I can't sit; I can only stand and lie down. Neurosurgery gave me injections in my spine to help decrease the swelling and instructed me to follow up in 3 weeks or so after discharge to see if I've progressed or if surgery will become part of the discussion.In addition to the pain, my bowels became a source of discussion...several discussions while I was in the hospital. I'm normally on the slow side but with the amount of narcotics on board, I'm at a heavy stand still. The regimen I'm on now still has little progress, but a normal person would be essentially living in the bathroom. It was so slow I have gone through 4 clean outs in bowel preps normally reserved for people going for colonoscopies. I should be squeaky clean. Not so much.
I had some great caretakers and some not so great ones. One personal care aide, Mohammad, was exemplary. He was kind, considerate, respectful, and treated me with dignity. Mohammad was in his 60's and had 5 children. He was not originally from the States. He helped manage the embarrassing moments, the vulnerable situations, and took interest in me as an individual. He got to know my husband and would inquire about my dog. He asked me questions about my knee scars and talked about the surgery in ways a personal care aide couldn't. My husband caught on and asked what he did. In Afghanistan he was a premier orthopedic surgeon. People came from all over to get surgery and care from his expertise. When he moved to America, he looked into doing another residency, but decided it was too much work. Giving up his career to be in America was worth it, he said. He was just happy being able to take care of patients. Here is a man who was used to giving orders in an OR and now was finding meaning in giving patients sponge baths and changing bedding. He said that sometimes you have to give up something to get something greater and he was happy with his choice. I couldn't imagine how hard it was. I found out later from his son in law, who also was a care aide and studying to go to medical school, that Mohammad was going to school to become a physicians assistant in addition to working full time. The man was incredible and I looked forward to seeing him everyday. I cried a little saying goodbye to him when I was discharged.
My discharge was tenuous at day 11. They wanted to keep me longer or transfer me to rehab. If anyone knows, rehab is a nursing home with physical therapy. That's about it. To
avoid this, my mom put on her Supermom cape and flew out to stay with us for about a week. She cooked several meals and put them in the freezer, cleaned, took Edgar for walks, drove me to my doctor's appointment, got my home health visitors in line, did all of our laundry, made sure my medication schedule was accurate and on time, navigated the small winding roads of Boston to get to the pharmacy and get my prescriptions, found her way to the grocery store and stocked our fridge, and most importantly, just took care of me.My medication schedule is a nightmare to keep straight. I look like a poly pharmacy all by myself. One med for the zinging pain, another for the burning pain. Muscle spasms? Are they caused by the myoclonic jerking of the morphine or the reactions to my pain? Don't
worry...there's another Rx for that. Oh, and are all of these causing reflux because I'm flat on my back while digesting all of these meds? Don't worry, they gave me something for that too. And don't forget my bowels. I've got more meds for that. This is just a photo of one of my 3 daily med dosings. I keep a journal of what I take and when otherwise I would never keep things straight. Its no wonder old people have a hard time. Look at how Western medicine works! They give you more pills for every side effect the first pill causes. I hate being on so much medication. I've been asking for help on how to come off of the morphine. I need a schedule and my first doctor wasn't helpful (she got fired by my mom, me and my pain nurse from home health). My second doctor clearly fell into the realm of not knowing pain management either because her schedule she wrote out scared the beejesus out of my husband and my pain nurse. The pain nurse wrote out a different schedule and got it approved by the doctor. I'm about 4 days into the weaning and its going pretty well. I can't wait to not feel so foggy all the time.
In addition to feeling so young and spry with my medication requirements, they've added insult to injury. I was discharged with a walker. Yup, like those you see 90 year olds using in nursing homes. A walker. I wish I could say it is the aerodynamic speed cruiser 2000, but really I just need to add the two tennis balls on the back legs and I'm granny. Its hard to feel all cool and sexy to your husband when you are tethered to a walker and need a pill box to keep your meds straight. The only thing I can do is laugh. I have been letting the sucker gather dust the past few days and only use it when I'm going out of the house. But, as you can imagine, going out of the house is rare as I cannot sit. Can't sit to go out to dinner with my husband, let alone stand a car ride without being reclined. I have to take baby steps otherwise I get those zingers down my butt so I would get run over if I tried going to Costco with my walker. Could you imagine? And then, I can't carry anything. I need a basket or something because carrying my purse on one shoulder misaligns my spine and that is dreadfully painful. Incapacitated? Yup, that's me.
The home health team has been a God send. I have an amazing pain nurse who has held several jobs in premier hospitals and helped write the pain management guidelines for the State. She said that medical schools aren't teaching how to deal with pain. They aren't. They threw narcotics at me when my true pain is originated in my nerves. Narcotics only work on 30% of nerve pain. No wonder I was still functional and in pain with such high doses. She advised that I be prescribed nerve pain pills and wouldn't you know, I was a different person within a matter of a few days. Docs are so afraid of dependence they don't give the right dose to begin with in traditional pain cases. Its the under medicating that causes the dependency. No wonder we have a problem with opioid dependence in the United States. I've also been assigned an incredible physical therapist. She is helping me work out my muscle spasms. Once I got these under control I was able to tell the difference between nerve pain and muscle pain. I couldn't believe it. Once I identified the difference I realized I've been in pain for a long time and just ignored it. That was an emotionally painful realization.
School has been a saving grace for me. It is what I work on while I'm flat on my back. I read, I finish papers, I do small assignments, I post to the threaded discussions. It is what is keeping me sane. The program director is worried that if I miss another weekend in residence that I will not be able to keep up with the contact hours and I'll have to withdraw. Right now I have all A's. Withdrawing scares the hell out of me. My follow up appointment with my neurosurgeons is Wednesday and if they throw me into surgery ASAP, missing another weekend may be a reality. Going back inpatient may be another reality. Going back up on the narcotics may be another reality. I've decided I don't like reality.
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