life before the hospital: diagnosing my insanity

A lot of people have asked me about my experiences leading up to my diagnosis of lupus and whether I was in a lot of pain, how I ended up in the hospital, etc. I definitely would like to blog about this for a number of reasons.

One reason is that it’s nice to be able to direct people somewhere if they want details on my situation. Another is that I want to be able to remember how things were to help me put things into perspective in the future. It’s only been a bit over a month since I was discharged from the hospital, and already I’ve started to forget what happened and what I experienced. It’s time to write it all down so that I can go back to it if I need to.

The biggest reason I want to blog about my experiences is to possibly help other people with autoimmune diseases in the future. When I thought I might have cancer last year, it helped me a lot to read forums and I also read a couple blogs written by people going through similar situations. Sometimes it helps to know that you aren’t the only one these things are happening to, so maybe one day I can do the same for someone.

If you’ve been following my blog, you’ll know that my health has been a mystery this past year. I was told there was a high chance I had lymphoma by an ENT specialist, and I also was tested for almost every infectious disease you can think of. I’ve gotten so many chest x-rays that I don’t even know how many I’ve had already. I’ve obviously gotten even more blood tests than that.

I was finally told that I should see a rheumatologist by my infectious disease specialist back in October. The wait time for this doctor was 6-8 months, so I just shrugged it off and didn’t think much of it. My GP told me that since I had no symptoms of anything, it was probably going to end up nothing and we were going to forget about it soon.

Symptoms finally starting showing in November. I developed bad joint pain in a number of areas, mostly my feet, wrists, fingers, and elbows. Some mornings I hurt so much that I couldn’t put my clothes on without help. I had to change the soap pump in my washroom to a bar of soap because it hurt too much to press the pump down.

The arthritis started at a terrible time for me because not only did I catch a cold, I had a plane ticket to visit the States for Thanksgiving. Before I left the country, I called my doctors office to see if I could see the rheumatologist sooner. They told me that since my condition worsened, I could probably get bumped up. I couldn’t see the doctor before my trip, though, so I went to out of town, sick and sore.

I’ll cut to the chase and just say it was the worst trip ever. I spent literally every day in bed and got increasingly more sick as the days went on. I really didn’t want to pay to see a doctor while out of town, so I stayed in bed and took medication, trying to keep my fever down. This was, in hindsight, incredibly stupid. I wish I could take this back and seen a doctor.

I finally went home, although I’m not sure how, given the state I was in. My mom picked me up to take me to the doctor the day after I got home and I collapsed in the doctors office. I drifed in an out of consciousness while he decided I had pneumonia and prescribed me antibiotics. My mom wouldn’t let me go home and I slept on couch cushions on the floor of her house and ate soup for days.

After almost a week of antibiotics, I was doing much better. My husband was still in the States but was coming home in a couple days, so I decided to go home. I didn’t have much of an appetite and I was extremely exhausted every day, but I didn’t have a fever anymore. I spent a lot of time resting but I was otherwise relatively fine.

I was finally able to see my doctor about my joint pain, which hadn’t bothered me much while I was out of town but came back with a vengeance in December. He said that he was going to try to get an earlier appointment for me but that it was probably going to be a wait still. He said I would have to live with my pain until the appointment but that I could take medication to try to lower the inflammation. I hate drugs but the pain was pretty bad, so I took a prescription for Celebrex.

A few days later my doctor called me with results of a blood test. He said I was anemic and also that I had a rheumatologist appointment in a month. I told him that I was doing okay on the Celebrex but that I felt really bad at night because I felt like the drug was wearing off. He told me to take it twice a day.

Later that night I was showering and noticed some strange spots on my leg. It looked like a rash. I had JUST seen my doctor that day and it was two days before Christmas, so I decided to ignore it for the time. I felt sick still, but I assumed I was just recovering from pneumonia still.

Christmas came and went with me staying home on my couch eating fruit and chocolate. In the days after Christmas, I got significantly worse. I felt feverish and sick and not myself. I stayed in bed all day in terrible pain, unable to get relief from anything. It hurt to move, it hurt to be in one spot, it just hurt period. I counted down the hours until I could take another Celebrex and only ate because Celebrex requires that you take it with food. I cried about how much pain I was in. I complained and whined when I had to eat or drink because I didn’t want to do it. I just wanted to lie down, but I could almost never sleep.

I wanted more drugs. It’s amazing how pain will turn you from someone that refuses to take any drugs for anything to someone that begs for them. I frequently said that I wish I could be knocked out. A couple times I thought to myself that I would be okay with dying so that I didn’t have to feel the pain anymore. I didn’t want to die, but it honestly didn’t seem like the worst thing at the time.

My husband finally put me in a car and tried to find a doctor for me. Problem was that it was just after Christmas and all the clinics were either at capacity or just closed. The other obvious option was the emergency room at the hospital, which was bound to have waits that were hours long. He took me to my mom. I almost certainly should have gone to the hospital, but instead I went to a TCM (a doctor specializing in traditional Chinese medicine).

I got some herbal medication and my mom told my husband to leave me with her again. I tried to cooperate and do what she told me, but it was really hard. I wasn’t myself at all. The first dose of the herbal medication seemed to make me feel a bit better the next day, but I couldn’t keep the second dose down.

FINALLY the Monday after Christmas, December 30th, came and I could see my doctor. He said I had scarlet fever and prescribed me more antibiotics. He told me to supplement my Celebrex with acetominophen to keep my fever down. Drugs, drugs, drugs.

I went back home with my husband a couple days later and continued taking the antibiotics. They didn’t seem to be helping much, though, so I went back to the doctor after 4 days to make sure that I was okay. He checked me over and said that I was on the right path. He told me to keep taking the drugs and that I’d soon be fine.

Or not.

That night I became unresponsive. I wouldn’t eat or drink or even answer questions properly. My husband told me that when he asked me something, I would stare at him blankly and then stare off into space. He brought me food and I didn’t eat it. I just wanted to lie in bed and stare at the ceiling and listen to Matt Good (whose songs are ruined for me forever, by the way, because I now associate him with being sick). Thinking that my electrolytes needed to be increased, my husband made me drink some Pedialyte and then sent me to my bed (we were sleeping in separate rooms because I was so disturbing to sleep with).

Sometime in the middle of the night I had one of the most scary experiences of my life. I got up to use the washroom but I couldn’t figure out how to get out of my room. It was pitch black and while I could get to the door, I could not find the door knob no matter what I did. Knees on the floor, I started frantically pawing around the door, desperately trying to figure out how to get out. I started screaming and crying for help and wanted to get out so badly, but I couldn’t. I’m not sure how long I was trapped for.

I don’t know how, but I finally got out. I stumbled into the hallway, turned the light on, and collapsed on the floor outside the washroom. I don’t know how long I was there before my husband came out to use the washroom and found me.

Next thing I remember is being back in a bed and hearing him call 911. A bunch of people came and asked me questions and talked to each other about carrying me out of there. I remember them asking my husband if I could please have a pair of pants. I don’t know how I got carried outside, I guess it was in a stretcher. I remember being stabbed with an IV in the ambulance. It was cold during the ride.

I was kept in some waiting area in the hospital for a long time. My husband, who came to the hospital with me, eventually left early in the morning and my mom appeared. I got some x-rays, blood tests, and other tests that I can’t remember. I was moved a couple times before they figured out I would be there for a while, and I ended up in the short-term stay wing of the hospital.

That’s as much as I remember about the days before I ended up in the hospital. While my week in the hospital is something I never want to re-live again, I DO want to remember it, so I’ll be writing about that in the future too.

There’s not much else I want to write about in this particular blog entry. While typing all of this and remembering it again, it seems incredibly surreal. I was so out of my mind at the time, it feels like it was a different person.

I also find it interesting that what I call one of the worst experiences of my life was really all in my head. When I was “trapped” in my room, there was obviously a door knob the entire time. Why couldn’t I find it? I don’t understand it at all.

It was the start of a lot of things that happened in my head. While I was unwell and my inflammation was high, all sorts of things happened to my thoughts in the days I was in the hospital and the days that followed. Having had no experience with either mental illness or brain disease, it was all new to me and truthfully very scary.

More next time.

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  • Reply Sally D February 16, 2014 at 9:34 pm

    Hi Courtney,

    While I don’t have any experience with auto immune diseases, I understand so of what you are saying here.

    About two years ago, I was diagnosed with idiopathic intra-cranial hypertension. Basically my brain was producing more spinal cord fluid then it could drain and the excess was collecting in my optic nerves.

    While the sickness itself didn’t really have bad symptoms, the medication really kicked my ass. There were times I would be in mid-sentence and I wouldn’t know how to end the sentence, who I was talking to, and what we were talking about. Many times, all I was capable of doing was sitting on the couch like a zombie not even comprehending what was on tv. I’m slowly getting better now, but there are still times when all I can do it just be.

    I guess what I’m saying is you’re not alone. Medication, while it can save your life, can really fuck you up in the process. In a way that people who aren’t heavily medicated really can’t understand. Just take life one day at a time and always do the best that you are capable of. Understanding, of course, that your best is going to change from day to day depending on how your feeling.

    I’m sure there is a light at the end of your tunnel and I wish you the best of luck!

    Sally from high school

  • Reply donkeybrains February 18, 2014 at 5:21 am

    Hey Sally, thanks so much for sharing your experiences with me. It really is incredible what drugs can do to us! I’m grateful that they likely saved me from brain damage, but I wish so much to be off them.

    “Understanding, of course, that your best is going to change from day to day depending on how your feeling.” This is really great advice, thank you for giving it. I’ve learned that feeling good is relative and that sometimes I have to be grateful for what I have at the time.

    Thanks again, all the best to you too :)

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