My last Facebook post featured light-heartedly a photo of Poison Ivy played by Uma Thurman in the 1997 movie, Batman and Robin, as I shared that not only did I have what I thought was poison ivy that started as a patch on my leg, but it had taken on a life of its own transforming into a painful, itchy rash all over my body. And though I received many helpful responses from caring people who have used a variety of products that have worked to reduce the itching and swelling for them, I should have been more forthcoming in my request for prayers, as my condition had already moved beyond the point in which any of the help offered would truly do much good. I had no idea how my adventure was going to unfold or that I would find myself falling into the rabbit hole of medical intervention. This is my story of how I came back out.
NOTE: Before I go into more details about this experience than perhaps you would like to know, (feel free to skip over the parts that do not interest you) I offer this statement: This is not a review of local hospitals or even a general statement about the quality of medical care I received. As in all walks of life, some are better at their jobs than others. What I experienced was a wide range of care and I am truly grateful for all everyone did to get me back into the comfort of my home with my husband and my dog. I hope you will read this in that light and not spend time trying to figure out where exactly I was or where you should go if you have need of medical assistance if you live where I do. I am only one person with one opinion. This is my story.
Saturday, August 29, 2020, I got up after another sleepless night of itching a rash that was getting considerably worse and decided I needed to return to the urgent care center near my house since their parting words to me when I was there two days earlier was if it did not get better with the prescribed prednisone, to please come back for reevaluation.
As I unwrapped the gauze-covered wounds that continued to seep all over everywhere, refusing to respond to the current treatment, the doctor did not conceal that look. You know the one that I’m talking about. The look that says all is not well regardless of how good your imagination is. She had someone check into the waiting time at local emergency rooms and said if I went immediately, I could be seen relatively soon. Hesitating briefly, I thought about returning home first. I had only had one cup of coffee and no breakfast. Pushing those needs aside, I kept driving.
I was surprised to see an almost empty ER. Quite a different scenario than the one embedded in my memory from years ago in which I held my crying son as his almost amputated toe hung by its skin and everyone involved in the accident was showing a lot of emotion. Except for me. I was in full-out mama-mode and may have even been humming to my boy. I most likely was in shock but no one had seemed to notice in a crowded room filled to the brim with needs.
But Saturday was different. I was by myself, in line behind a woman with a bloody bandage who was explaining how she became wounded when the chainsaw guard did not guard her hand from being gouged. She had not lost any fingers, she said, but there was quite a bit of blood. She seemed quite coherent and I was proud of her for having the nerve to learn how to use the chainsaw to begin with, even though it unfortunately did not work the way intended.
After being walked back to a room, I was asked to put on a hospital gown and lie down on a bed. The rash continued to spread unabated. It would not be threatened by those eager to assist in my recovery. A nurse with compassionate eyes and a great sense of humor took over. She said she would tell me the truth no matter what and I immediately developed an affinity for her. When I asked if I could have my thyroid medication she said she understood how easy I thought that was going to be. I think someone examined my pill box and identified the pill before allowing me to swallow it. I am so programmed to do my daily regimen that even in the midst of this out-of-control rash, I knew that I needed to maintain myself as best as I could.
I am unclear about how many medical personnel were in and out of that room. I remember being asked over and over if I had recently taken any new medications, eaten something different, gone somewhere new or in any way changed my daily routine in which I had come into contact with this thing that had become a rash, now ravaging my body. Was it in my mouth? In my eyes? Affecting my breathing? How far was it going to go? How much danger was I going to be in?
All I could come up with was that one day, I think it was the Monday before, I had come home from work to hear my husband say that the dog had decided to take himself for a walk. What that means is that he got away from my husband and ran into the woods behind our house. My husband used to be able to walk back there, on the path beside the creek, and I figured I would do the same. I didn’t realize until I got there that the path is now overgrown. There really isn’t a path anymore. So I walked through knee-high overgrowth calling for our naughty old pup. The dog probably would have made his way home eventually but now that he is 13, somewhat deaf and blind, I didn’t want to take the chance. Before long he came running out. Lost dog: found.
The next day I noticed red bumps on my left leg and figured they were mosquito bites, possibly a spider bite, or most likely some poison ivy I must have brushed up against. By Wednesday I happened to look down to see yellow sacks of unpleasantness forming before draining uncontrollably into my Birkenstock. Since I was at the school where I work, I sent a photo to the school nurse who seemed to think I was experiencing an allergic reaction to poison ivy, reminding me that she was not a doctor and did not have the ability to give me a diagnosis. I asked one of the security officers at the front desk of the school to find some bandages so I could cover over this multitude of whatever it was running down my leg to divert the attention of the 3 and 4-year-old children under my care.
By Thursday morning it was apparent to me that I should not go into work. I would have to face the fact: I needed medical attention. I had never taken a sick day while at this job but I had no other recourse. The clinic near my house was the obvious choice since getting an appointment anywhere else would have most likely put me on a long list and I did not have the luxury of time. I could not imagine going directly to the hospital since that sort of behavior is what people without insurance are forced to do, ending up with breath-taking medical bills afterward. I did not want to put myself into that category since I did not have to.
But here I was in the ER, trying to figure out, along with all of the medical personnel, what was happening to my skin!
After about seven hours I overheard a conversation about the possibility of admitting me to the hospital. I was concerned that this was a bigger problem than I had imagined. I then heard talk of sending me to a burn unit since a burned person is precisely what I was beginning to look like. Dermatology was another word that kept coming into the conversation. And just as I thought they would be taking me upstairs to a room, I was told that the team was on their way to transport me to another local hospital about 30 minutes away. By ambulance. While an IV containing pain medication was trying to give me some comfort.
I would not find out until much later that apparently I don’t respond to most pain medications. Or more correctly, I respond, but not in the intended way. Benadryl either has no effect or makes me hyper instead of relaxed. The Percocet given made no difference. By the time I was being placed into the ambulance I was being given Fentanyl and asked if my pain level which I said was at least an 8 out of 10 had subsided. It had not. So they gave me more and asked again. I wanted to say it had helped. They were such nice men. I asked if I could give it a 7 and a half. No. Nothing was touching the pain.
By the time I was wheeled into a hospital room, the urgency of the ER had transitioned into a slower pace of setting me up in my new temporary home where I needed to order dinner and familiarize myself with the nurse call button and how to position my bed. I was suddenly “on vacation,” the kind I would never have chosen.
I’m not sure exactly when it happened, since the drugs in my system were having some sort of effect even if it was not in reducing the painful itching, but a doctor came into my room to ask me what are referred to as the advance directive questions. He asked if I were in need of life-saving measures in order to restart my heart or be put on a ventilator in order to keep me alive–would I be interested?
My response: “I’m reading Being Mortal.”
He looked at me in a way that acknowledged that he, too, is familiar with a book written by Dr. Atul Gawande with a subtitle: Medicine and What Matters in the End. I don’t think I said out loud that I was reading this book in reference to my husband’s end of life considerations due to his ALS diagnosis, and that this has nothing to do with me. I’m not the one dying. Right? I think I mumbled something to the effect of: “Sure, save me.” It would not even occur to me until much later that my life could have ended, my husband would have had to write an obituary he said I would never be completely satisfied with, and he would have to put the house on the market and find assisted living to go on for as many days as he may have left.
According to hospital policy, one admitted to the hospital must surrender all prescription medications in one’s possession. This is what I imagine it must be like for someone being arrested. I volunteered that I had a small pill box in my purse that contains my thyroid medication. How I regretted being so upfront about it as I am fairly certain no one would have done a search. I would be told that their pharmacy has Synthroid and that I would be given the amount per my prescription.
Ok, if you have known me for very long, or if we have ever had the “thyroid medication” conversation, you know that hearing I would be given Synthroid in no way put my mind at ease since Synthroid was the first thyroid drug I would be introduced to in my nearly 17-year hypothyroidism journey, and though it was given to me in varying strengths, would never prove to be effective for my condition in any possible way. (As an aside, by the time I was tested for hypothyroidism, a genetic gift from my parents, my thyroid stimulating hormone or TSH was at an 11. It is supposed to be at a 1 for optimal health. What I would discover on my journey is that there is discrepancy in what is considered optimal and what is considered “good enough.”)
I told the nurse that I took a natural hormone for my thyroid condition. She said Armour was available. Not to be a difficult patient, I told her I have not been able to take Armour ever since it was taken off the market and reformulated with a filler I am allergic to and causes me to become ill. She said if someone could come to the hospital with my actual prescription bottle, I could be given my own prescription. I told her that was not an easy request. She must have noticed my wedding ring as she said the way a frustrated mother would scold a young child, “Why can’t your husband just bring it?”
I responded, “Because my husband cannot drive all the way over here. He has ALS.”
“Well what about his caregiver? Maybe that person can bring it,” she said as her tone became more of a teacher about to send some wayward kid to the principal’s office.
“I am his caregiver.”
Perhaps this nurse was overworked and underpaid. She could have been at the brink of exhaustion. Or maybe she had spent time working with juvenile delinquents or even hardened criminals. Maybe she missed her calling altogether. Maybe she lost sight of the patient before her: the barely 59-year-old woman with her skin falling off who was having a difficult time managing the pain and was telling her the truth. Instead she scoffed at me and I wondered out of all of the lies I could have ever told, why I would ever make up the fact that my husband has a progressively debilitating disease that may end his life sooner rather than later and he could not possibly just drive on over with my prescription medications. This was not a “the-dog-ate-my-homework” type of excuse. This is the life I am living.
The other obvious part to the Armour conversation is that in the midst of being asked by the multitude of those helping me what I could possibly be allergic to, I was without a doubt offering up something that actually makes me ill. And yet, that was the medicine doled out to me the next morning. I took it thinking that having the thyroid hormone would outweigh the stomach ache I would have all day. I was wrong. The worst part was that it was by this point Sunday and there was no way my doctor could be contacted, or the pharmacy where I get my prescription, or anyone else.
Except for my husband and my friends who could drive him and who decided to make a mission of mercy and come to the hospital with my prescriptions.
I was not even aware that my husband would be allowed into the hospital during this time of pandemic, but they not only allowed him in but my friend insisted that he needed her help as he now is a fall risk and makes his way slowly by use of a rollator walker, so she was able to accompany him and come in briefly as well. Maybe they thought he was a patient. Maybe God was intervening. For whatever reason, the small plastic bag my husband was carrying was never inspected and the presumed contraband was not confiscated. He brought my thyroid medication and another medication I take at night to my room where I hid it in the bag that contained my clothes in the small closet.
I am a law-abiding citizen and truly respectful of rules, for the most part. But I also knew if I wanted to have a regular constitutional in the morning so that the nurse could check that off her list and not have a stomach ache to add to the pain I was in, I would have to take matters into my own hands. I safely tucked a few thyroid pills into a pocket of my purse. I knew my honesty would prevail and I would eventually give up my prescription bottles. I also hoped that I would be allowed to have my prescriptions as my doctor intends. When I was told that my afternoon dosage was not on my prescription (see the part in which it says Take 1 tablet by mouth TWICE daily) it was promised that I could have it at 9 p.m. I was happy to be able to regulate my metabolism at the appropriate time of day with my secret stash, and not be given something that would also keep me awake at night.
I would be given Benadryl IVs along with some other pain medication that gave a certain amount of relief and allowed me to sleep until the friendly certified nursing assistants would come to take my vital signs and someone else would come about an hour later to try to find a vein that had some potential of rendering another blood sample. At least in my bed I was no longer wearing a face mask like I had in the ER. I had endured a COVID test that had come out negative and for that decided that I was ok as long as I stayed in my bed. Except for the bathroom, I had nowhere to go.
A doctor from the dermatology team came to do a biopsy and talk to me about a possible diagnosis of my condition. There exists a very rare, chronic autoimmune disease that usually affects someone at the age of 60. I don’t know if he said this because I am closing in on that age or if this was a reasonable guess, but as he carved a circle on one arm and punched a small hole that he would stitch up on the other arm, I wondered if I was ever going to recover or if this would become a life sentence. I already have one chronic disease which requires me to take medication every day of my life (twice a day!) and I really did not feel that I needed another.
The biopsy would be analyzed some time on Monday or maybe not until Tuesday. I don’t know what he said after that. I had left home Saturday morning. All I wanted to do was to go back.
Sunday night I slept for the first time in awhile.
Monday I spent watching movies while I ate the food delivered to my room. I was finally given one of my thyroid pills, along with one of my other pills that I don’t take until the evening. I pointed out that I was supposed to have three of those pills, (Take three capsules by mouth at night) but even though it is clear on the prescription bottle, there was nothing clear about what was happening.
The pharmacy department called to consult with me and get a full list of all the substances I take on a daily basis, or at least those I was willing to admit to. This is a problematic question given that within the norms of traditional medicine it does not entirely make sense. Let’s face it, I am a woman of a certain age who wants to make the most of her energy level, have a healthy weight (even though I am always about ten pounds more than my goal at any given time), and avoid hot flashes at all costs. I take a variety of herbal concoctions including pregnenolone, DHEA, a probiotic, something called estrogen control and one of my favorites: ashwagandha.
Ashwa–what? I know. There is always a pause while the person evaluates my status. Is she crazy or just an aging hippie? Whatever, man.
That is my morning regimen in addition to NP Thyroid, a natural hormone for hypothyroidism, a disease that happens when the thyroid gland which regulates metabolism stops functioning. Mine gave up the ghost almost two decades ago.
At night it is magnesium, a couple of multivitamins, vitamin D, progesterone, and melatonin. I know this is more information than you need to know. I only reiterate it here because after a couple of days of being without these live-giving properties that I rely on to be the civilized person I hope to be, I was becoming less able to deal with anything. Forget about the lack of chilled Pinot Grigio, various flavors of White Claw, possibly a craft beer or Guinness, and whatever else I may deem necessary to fully embrace this world in which we live.
A group of dermatologists would consult with me, reversing the prior pre-diagnosis of the dermatologist who had taken the biopsy. It was the happiest moment I had experienced in awhile. Happy, yet confusing. I did not have the autoimmune disease which was amazingly wonderful news. The biopsy supported a diagnosis of an external source creating the allergic reaction. But what was it? No one knows! Poison ivy is a good guess, but not the definitive conclusion. Something happened. I reacted. End of story. Is the moral of the story that I should never walk into the dark scary woods again? Given the information at hand, whatever happened, happened.
As an aside, I do know that I am allergic to MSG, the filler in Armour thyroid, and have the exact opposite reaction to Valium thanks to an unfortunate dental sedation procedure. I know I am somewhat lactose intolerant and that there is an additive in most ice cream that makes me feel pretty sick. I have broken out in a rash from laundry detergents and soaps. I have to use products for sensitive skin, and generally need to have everything unscented and with as few chemicals as possible. I can get sunburned within minutes. I seem to have every recessive trait known to mankind. This is not me trying to be a weirdo. This is just who I am.
By Monday night I could no longer sleep. At all. At midnight I turned on another movie. By 3:30 a.m. I drifted off until maybe 4:30. And that was it. I asked for medication. It had no effect. I waited a couple of hours and asked for more. Still nothing. A nice older woman desperately seeking a vein that had not been blown out said I could ask for more of something. I asked if I could have the prednisone. Nope. That was not scheduled until 9 a.m. I would only have to endure unbearable itching a few more hours.
I was greeted at 6 a.m. by the nurse with my thyroid medication. I didn’t want to take it because it truly serves as my wake-up call and I wasn’t prepared to face the day. It was then that I realized I would not have the opportunity for sleep because another doctor would need to consult with me and decisions would have to be made. I was in no shape to make them, but it didn’t matter. I tried to summon some sort of polite behavior but heard myself speaking in a tone that would be categorized as irritable. I told the doctor that I was getting better and that I needed to leave. Now! By the grace of God alone, she agreed.
Another doctor consulted with me. I told her I had been unable to sleep. All night. She went over to the computer and said it was no surprise. The first medication given was in such a small dosage, there was no hope of it giving me any relief. The second medication was in an equally small, ineffective dose. She pointed out that I was strung out because that is what steroids do to one. They also will make me gain weight. This is not what I needed to hear! But she was kind and had an unpronounceable Indian name and spoke in a British accent, I think, calling me “darling.” I needed to hear someone calling me darling and telling me the truth. I just for the life of me could not understand why there was not a better system for communication between the doctors, the nurses, and the pharmacy. I have thought about writing a letter since that is what I do when I am wondering about something and want to share those curious thoughts with someone in a position to possibly effect change. I don’t know, though, because I have been kind of in and out and not always on my best behavior. It is hard to fully understand and document something when one is unsure of what day it is.
I was told that I could be discharged by noon. It was Tuesday, September 1, 2020.
By one o’clock I was wheeled down unfamiliar corridors. Everything looks different when one only has a view of the ceiling from the stretcher. My husband greeted me outside with the friends who had come to my aid. They were now happily driving me back to my life. Still itchy and somewhat out of it I struggled to sense what was going on. All I cared about was going back to some sort of normalcy.
But though I was managing the itching during the day, it came back full-force once I turned in for bedtime and I could not sleep. And there was no button to push for help. I put whatever I could on the rash to no effect and made my way through another miserable night.
By Wednesday afternoon my prescriptions were ready at Costco and though I had barely seen the light of day for awhile, got myself into my vehicle while wearing a long-sleeved Madras shirt that I used to wear as a bathing suit cover-up and the long gray skirt appropriate for the Muslim part of the African country for which I purchased it a couple of years ago. Driving down the highway I put in Carole King’s Tapestry, my favorite album of all time, and sang along since I know the words to all of the songs that I have been listening to since I was in 7th grade. I was going to be ok. More than that. I am grateful that I was able to get the medical help I needed in a timely fashion, which is more than many can ever hope for.
I stayed up until midnight just so I could take another medication that would help with the itching. It was better but not enough to give me relief. I got more sleep than I had in awhile and though the rash is still very pronounced, the constant tingling is beginning to recede to a bearable level. The large patches of angry, red seeping mess are drying out, flattening, and healing. Soon my pale, freckled skin will be restored and this whole thing will be nothing more than a really bad week.
If I am honest, I have to admit that it is hard for me to draw attention to myself and my needs, especially in light of the very public deterioration of my husband’s health. He posts how many laps he swims at the public swimming pool and is cheered on as a beautiful way of support. We are sent lovely cards and messages to encourage him. Most recently we were sent an article that addresses the latest drug trial in ALS research in hope that something can be done to extend his life. Anything.
So in the midst of all of that, I had need of prayers, too. But I felt more comfortable in my all-too-familiar-wallflower way of not asking for help.
Sometimes a caregiver needs care.
A lot of the time, truthfully.
Thank you for reading and sending me your love.