Wow, how things can change in an instant. Honestly, there we were just sitting on the patio shooting the breeze after Dean got home from work and I said, “I’m going in to lay down for awhile, I think this medicine is already making me sick.”
I made it to the bedroom and my body seemed to begin going into hysterics without me. Flu like symptoms, heart racing, dizzy and utterly wasted with no energy to hardly stand up. It hit so intensely that I told Dean he was going to need to take me to the hospital. We got out to the car and I said, “You need to call and ambulance. I can’t even get into the car.”
The rest is a bit of blur after that…I’m on the floor at the top of the stairs, he’s on the phone, I hear our address spoken, two guys in brown shirts sporting sheriff’s badges are coming up my stairs with an oxygen tank. One says my name and I respond. Before long there are more guys in the house and one wants me to sit up which I can’t even begin to do and before I know it, I’m being carried down my stairs on a sheet, placed on a cart and whisked away to the hospital.
The entire ride was hell. I’m losing my bodily fluids by a stranger, I can’t feel my hands or feet and am told I’m hyperventilating. “Count to five when you breathe in and exhale slowly” How is it that I remember that part? Because every freakin person I saw until they put me into lala land kept admonishing me to do just that. I could hardly think let alone count to five. I arrived at the hospital a total mess in every possible way. I’m whisked into a room and they start asking question, after question, after question. This spunky little nurse says, “Jane, you are going to have to answer my questions”
“Oh, am I?” said I to myself. I didn’t.
It was just minutes and I was surrounded by strangers (who do this every day for a living, thank God!) and was told that I had lost too much fluid and was becoming hypovolemic which can apparently lead to organ failure because the electrolytes get all out of whack etc. Well, what does one need in such situations? IV’s lots of them and then out of the blue this man shows up and tells me he’s from respiratory therapy. I soon learned that it meant that he was going to be the one intubating me so they could get a central line IV in and put me in the ICU.
The next morning I woke up to Dean on one side of me, Hannah on the other and this ginormous thing in my mouth. As I slowly come back to the land of the living, they began to fill me in on just what happened to me. Dean told me the ICU doctor told him, “My job is to keep her alive tonight”. OMG…I still can’t believe it.
I came home yesterday (Saturday 7/2) around 1. As we drove into the neighborhood I asked Dean if there had been anyone outside when they picked me up. He said, “Yes, everyone was outside – after work etc.”. He went on to say that kids grow up and see things like this and it’s just part of real life. He’s right, but does it have to be MY real life?
It would appear that the medication I took to suppress my immune system in order to control the auto-immune flare up I’ve been dealing with was what my body reacted to according to one doctor, the other thinks I had an infection (he was a GI specialist rather miffed that I was seeing doctors at Mayo – seriously?!) Dean and I are attributing it to the medication because I took the drug for 3 months in the early 90’s and developed liver toxicity to it back then. Though I never became this sick from it, it seems too coincidental for us to think otherwise. My doctor’s rationale for using it, his preliminary tests and method of delivery were all sound and based on good science but nonetheless, my body said, “No”.
I have so much to learn. My therapist and I have been talking about listening to my body for the past 5 years but in a world of rational western medicine that sounds almost crazy. That vein of thought says objective evidence rules the day. One GI doctor told me, stress doesn’t make us sick. It’s just what doctor’s say when they don’t know what’s really wrong. In the ER no one was asking my body any questions in the ethereal sense but instead they were looking at the evidence in front of them, making their best decisions for my welfare. Those decisions were based on years of scientific research and study that didn’t even originate with them but as discoveries were made, more questions were asked, new insights gained etc. Realizing that my muscles were cramping, my extremities turning color and my consciousness slipping away, they acted in seconds and saved my life as a result. I cannot discount any of it. But how do I process the reality that I took a medication that had already proven itself toxic to my body and that as a result I ended up in Intensive Care fighting for my life? How do I process that without feeling totally responsible? I can hear a family member who hates western medicine in all its forms almost gleefully saying, “I told you so.”
I often feel as if I’m a person caught in this swirling vortex with stuff from the western and eastern medicinal worlds whirling into my life at such breakneck speed that I cannot even begin to make the best decisions for myself. I do the best I can to be rational and sound-minded but it is less than easy most of the time. In our modern world once you get an illness of any kind, the information flood that comes your way can be as unhealthy for you as the illness itself and of course, it all comes at you when you already feel like crap.
Living in this vortex for so very long and navigating my way through so much information over the years makes me somewhat guarded when sharing about the details of my journey. I honestly used to just live my life as a wide open book, even for Nebraska standards, but the years have taught me that when you open your life up to people, you are instantly vulnerable. And yet, it’s not the vulnerability to more pain and confusion that I fear, though that is there too, what I dreaded most when Dean told me he had let our friends know via Facebook was the exposure that I’d made a really stupid decision to try a medication that had been toxic to me before and ended up in the hospital fighting for my life as a result. Seriously, each time I check FB I hope I don’t get some kind of message reminding me how terrible western medicine is with suggestions of the latest oil, herb or flower to try.
I’m sharing this because I do feel vulnerable. I feel vulnerable because I have a disease that has lurked in the shadows of my life since I saw my first rheumatologist at 16, woke up from its sleep after I had my first baby and very likely contributed to my second baby’s prematurity. This disease is emotional, spiritual, physical, mental and any other thing that we humans have going on in and about us. I need to say for my own well being that I am doing the very best that I know how, that I do not want to be sick and cause my family and friends to worry. Everyone I personally know who lives with a chronic illness is living life in this vortex and we give thanks for anyone who just lets us deal with it the best way we know how and loves us as we are.
I want to live and enjoy my healthy daughter and taste her joy as she cares for the elderly.
I want to go to a live show in Austin with Stephen and Theresa and eat at Torchie’s Tacos on a Sunday morning for breakfast.
I want to hold baby Ava Sue Dinkel and play with Stinky Jones and Stinky Pete then take big sis Lexie out for ice cream. I want to fly in my brother’s plane.
I want to live and
I will say when this journey is done…auto-immune disease or not…
Thanks for being there for me, for us.