I ended my season on a high note making 2 out of 3 mains in Orlando Florida at the Disney Cup. This motivated me even more for the off season… pure power training for 3 months. My body on the other hand had a different plan for me. Two days after arriving home after the race and one week vacation with my family and boyfriend, I got super sick. I thought it was just the flu. Fever, nausea and an inability to keep any food down to save my life. Not to mention the most ridiculous night sweats that resulted in me waking up absolutely soaked…clothes sheets and even my duvet. It wasn’t like I woke up nicely either; I woke up in a panic like someone had shoved a snake in my face. After a week of this, I ended up in the hospital with hepatitis. Hepatitis as in, inflammation in my liver not Hep A, B or C. On a side note if you hate needles I suggest trying to stay away from a liver biopsy as that comes with four freezing needles and an absolutely huge needle gun they use to puncture through your stomach into your liver. The doctors wouldn’t even show me the gun before they did it because they knew it would freak me out, which freaked me out even more.
After 8 days of being on morphine, antibiotics and blood tests every morning at 6 am, my symptoms resolved themselves and I was discharged from Surrey Memorial Hospital without a firm diagnosis.
Surrey Memorial Hospital. My mom ended up flying out while I was in the hospital in Surrey and she and my Dad insisted that I came home to see doctors instead of staying out in BC. After having a conversation with my Coach Ken, I began to realize that it was a good idea as well. “The only silver lining about this whole thing is the timing” Ken said. Back in May I tore a ligament in my ankle and due to me continually riding on it throughout the season it was unable to heal properly. My ciro, Dr. Jen Turner and ankle specialist that I had been working with insisted I take at least a month off to let the ligament heal completely. I ended up flying home with my mom two days after being discharged. Although it was hard hearing about everyone else training while I sat on my butt, it was nice to be home and spend some time with my Mom and Dad. Days went by and I was starting to feel myself again, I even sneaked off to the gym once. A week after I’d been home, I began to develop this rash on my body. It started on the palms of my hands just little red dots you could barely see. The next day it appeared on my stomach and legs. One more day and it was everywhere and I had a butterfly like rash on my face. The first thing my GP said was she wanted to rule out Lupus. At this time we were still waiting to see a specialist about my previous blow up in Surrey but that was put on hold as I was off to the ER again. My hands were swollen to the point where I couldn’t bend my fingers or grab anything and they felt like they were on fire! I looked like someone put a pump up my bum and pumped me up. I was just a swollen mess. The ER doctor ended up putting me on a painkiller that was stronger then morphine called Dilaudid. For the rash I went on Benadryl, which didn’t do anything. The Dilaudid was the only thing that made my hands stop burning.
At this point my Dad was freaking out because the doctors didn’t know what to do with me. No specialist had called us back with an appointment or anything. The doctor gave me the option to have a steroid shot that would suppress my immune system a most likely provide some relief from the rash. He also said if I had an infection and they give me the steroid it could cause a lot of dangerous problems so I declined that. In the end, they ended up admitting me into the hospital again in Cambridge. Cambridge Hospital. To be completely honest the first week I was in the hospital was a complete blur. I vividly remember people coming to visit me and me not being able to stay awake because the drugs were so powerful they just knocked me out. After a few days the hospital resident doctor came into examine me. After doing her thing she sat Mom and me down and told both of us that she thinks I have Lupus. My face instantly went blank and every bad thought you could think of went running through my head. At that point I didn’t know much about Lupus except that it was a chronic autoimmune disease that was caused you to have a butterfly rash. The worst was my Mom asked if it was life threating and the doc said “Yes”. I instantly thought my dreams of being an Olympic athlete were done and over with right there and then. I was heartbroken but strangely at the same time relieved to know what was going on with me. Later I learned that you can live a normal life with Lupus and actually there are a lot of athletes who have Lupus.
I was somewhat relieved thinking “Sweet, I’m going to get on some drugs and be on my way back to BC “. Nope I was wrong once again. A rheumatologist was suppose to come see me a few days in but ended up not showing. I ended up taking an ambulance ride to Hamilton General to see another rheumatologist (studies the immune system). We were told there’s a 25% chance it is an infection and 75% it is rheumatologic (ie Lupus, Juvenile Rheumatoid Arthritis or one of 100 other autoimmune diseases). If the latter then there was a 50% chance that it is Lupus. So we were back to not knowing again. It was very frustrating, as I had already accepted the fact I had Lupus. I cried for probably 2 hours after finding out it was back to doing more tests and no knowing. On the way home from Hamilton I fell asleep in the ambulance and woke up and it felt like someone had sat on my chest. I couldn’t breath, but somehow I could still cry. The paramedics quickly put me on oxygen and I was good again. The whole time this is happening my Dad is sitting there holding my hand saying your going to be okay. It was scary I’ll tell you that much.
After returning from Hamilton I had appointments with 4 doctors. A Hepitologist, who specialized in the liver, an infectious disease specialist and a skin specialist. I had a surgeon come in with 4 other doctors and take a biopsy of my skin….more needles! yay! I spent the rest of the time in the hospital with my Mom and Dad trading off who spend the day and night with me. I was rarely alone expect for at night went I forced them to go home to get some sleep. Mom and I usually had naps together or ate lunch and looked for a puppy. Dad would make me get up and walk so I would not develop blood clots. This required a shot of my pain medication beforehand due to the throbbing pain in the back of my legs that happened if I did not have my legs elevated. When I went to the washroom I had to put my feet up on a footstool. I figured out eventually that I was able to walk with my compression socks on and between the pain meds and socks I was up walking around in no time. Actually I was more like floating most of the time. Sometimes Dad would just push me in my wheel chair because I was having trouble walking in a straight line.
On Dec 13 the doctor I was originally working with was done her week shift so I ended up getting a new doctor that knew nothing about me. By then my rash had let up a bit and the swelling went down. I was still sure it was Lupus so I insisted the doc put me on the steroid because I didn’t want another flare up. I had asked the doc what was keeping me in the hospital and she said the port in my arm that they used to inject the pain medication. Using drug induced logic I thought, “ No more pain meds and I get to go home”. I went “cold turkey” on my pain medication, an opium based drug that I was getting every 4 hours for 8 days via the port”. No one told me the consequences of this. In fact one of the doctors reacting to the concern a nurse expressed to my parents said I wasn’t on it long enough for them to have any impact. The night before I was discharged I started having anxiety attacks. I felt like I was on the top of a SX hill for the first time. It reminded me of that awful feeling in the pit of your stomach that goes away once you go down the hill, except the feeling did not go away. I also felt like I could run forever, or rather had to run forever. Over time it got worse to the point were I was pacing back in forth in my room on the phone with my boyfriend who was trying to calm me down. I ended up calling my Dad that night and he came back to the hospital at 10 to sit with me. We called the nurses and they said it was the prospect of going home that had me anxious. My nurse ended up giving me gravel, which knocked me out, while my Dad rubbed my back. It was the only way the feeling would go away. When I woke up it was right there again sitting in my gut. I freaked out in the morning. I felt like I wanted to rip something apart or go run into a wall multiple times. Again the nurse said I was just excited to go home and suggested Dad taking me for a walk. I still couldn’t walk because it hurt too much so Dad spend 3 hours pushing me around the hall in a wheel chair waiting for the doc to come and discharge me. It helped but the feeling was sitting there. I did get discharged, but spent the next 24 hours having anxiety attacks every few hours.
We didn’t know what was going on because the doctors had not mentioned the word withdrawal. Every time I had an attack my Mom and Dad would just sit and hold me while I cried and screamed until it went away. Most of the time they were crying with me. It was the worst feeling in the world. I tried pedalling on the spin bike to keep my legs moving while I screamed my face off. It helped a bit. I now know why people can’t get off drugs and get addicted to them; they don’t want to go through that. I ended up begging Dad to take me back to the hospital, but made him promise me that they wouldn’t admit me. I walked into to see the triage nurse who did all my vitals and such, then looked at me and asked “ so what seems to be the problem” to which I replied “ I’m freaking the fuck out”. Dad later told me that she calmly wrote that down on her form. The ER doc told us that the doctor and nurses were wrong, it was not because I was going home it was that I was going through withdrawal. He put me back on the painkillers an anxiety pill and instructions on how to safely wean off the meds. My GP later described this pill as “8 beers in a pill”. All I remember is my brother Corey having to walk me into my bedroom once I returned home.
Since then I have been weaning off the pain medication and on 12 days of steroids. I felt almost back to normal, expect since my body was so swollen I started shedding skin as it commenced its healing process. I began to loose the top layer of skin all over my body, but mainly on my hands and feet where the rash was the worst. It's pretty disgusting but my doctor said it's normal.
I received a call from my infectious disease specialist a few days after being discharged asking me to come in for a follow up appointment. I went in on the Monday 2 days before Christmas with my parents, expecting to hear that I’d tested negative to all the tests and they still didn’t know what was up. Instead she ended up telling us that I tested positive for Epstein-Barr virus (EBV) also known as Mononucleosis. She explained that in Surrey they did an initial blood screening for mono and it came back negative. Based on that they put me on an antibiotic. Unfortunately the initial screen will often show negative, and the antibiotic reacted with the virus to kick off a nasty drug reaction. This explained the rash and why I was swollen like a balloon. She said she had two patients upstairs in the hospital that had the exact same thing. I asked her “ so what now” she said your fine. You don’t need to go to any more appointments and your going to be fine. Quite the contrast. In a matter of minutes I went from Lupus to all of this being over and having “the kissing disease”. In total, since Nov 1 I spent a total of 4 weeks in hospital, 2 week both in Surrey BC and Cambridge ON. The point of this write up was not to brag about what I’ve gone through. I want to open peoples eyes, make them realize how fast things can change and if you're healthy don’t take it for granted.
So what have I learned:
- autoimmune diseases are on the rise
- 70% of the cases are young women
- 75% of the causes are environmental, 25% genetic
- do not take your health for granted
- be grateful for all you have even if its not a lot
-Amelia Walsh
www.magnoliaBMX.org
After doing a BMX 'zine for ten years (1987 - 1996) FATBMX made it on the internet. The year was 1998. Here to stay.