I almost didn’t go.
For the past two years, ever since Creation announced Hawaii in 2015, I’ve been planning this trip. I bought my Gold ticket the day they went on sale last April; Jared and Jensen photo-ops immediately after. I toyed with the idea of Misha’s photo-op early or at the convention, but his photo-ops had been selling out at other locations, so I decided to go for it. I booked the convention hotel the day it was available.
I purchased my plane ticket and rented a Jeep Wrangler back in February.
A few months later, new photo-ops were released: Jared and Jensen and Misha groups. Financially, I wasn’t 100% sure if I’d be able to go; it was still too soon to tell. Finally, I made the decision to purchase the group and Castiel charity photo-ops because they always sell out and would be in high demand if I needed to sell them later.
Not long after this, my health began to deteriorate, rapidly. I’d been noticing small red spots on my ankles, calves and upper thighs from what I assumed was caused by pressure on my legs from working the closing shift at the local dollar store most nights. On one such occasion, my legs hurt so I took some Tylenol and went to bed; nothing out for the ordinary. Instead of waking up magically pain-free like normal, I woke up in the middle of the night to use the bathroom, and I couldn’t stand. There was this searing pain up my right shin that was impossible to put weight on. So, I crawled to my brother’s bathroom and used the toilet seat to lift myself up, then held onto the sink counter to lift the seat and sit back down.
My grandmother used to store her canes in the closet opposite the bathroom, so I used the counter to stand on one leg and hop to the the hallway, using the walls and doorjambs to maneuver. Her cane took the weight off and allowed me to slowly make my way back to my room, upright. No one was awake yet, so I tried get some more sleep. Later, I used the cane to get to the stairs and crawled up each step with my knees, then down the hall to the living room to use a chair for leverage, dragging the cane with me the whole way.
The pain was radiating up my shin from my ankle, which was swollen, splotchy and agonizingly painful. My mom took me to urgent care when it finally opened, using my grandmother’s rolling walker to get there because the cane just wasn’t enough. They put me through a battery of tests, bringing me to different departments in a wheel chair: blood work, x-rays, ultrasound. No break or clot. Slightly high white count…it looked like a bug bite. They put me on antibiotics for a possible infection or bite and gave me crutches to bring home. The antibiotics worked and after about a week on the couch I was back on my feet.
I've been living with Ulcerative Colitis practully my entire life. I was diagnosed at 14 years old and have seen a handful of gastrointestinal specialist over the years. After my last colonoscopy, my GI specialist that I had been seeing for eight years said there was nothing more she could do for me and sent me to an elite GI specialist at Boston Medical Center. I had a consult with him a couple years ago, but decided to stay with her because she was closer, but now I had no choice. He suggested every medication in the book, but my inability to swallow pills ruled out all the time-release capsules that had proven highly effective, and suppositories skeeve me out. Every prescription he did give me had some unacceptable side-effect or just didn't work. He held off trying other medications until after my colonoscopy.
The week before my procedure, I’d noticed the red spots again, in various sizes. I was working another closing shift at the dollar store and throughout the night, my shoe got more confining as my ankle swelled again. I bought some flip flops off the wall to give it more room to expand, then spent most of the night sitting in the office. I went back to urgent care, had the same tests as before and was given more antibiotics, lived on the couch and was up in a week.
No one knew what was wrong with me. My GI thought it was Erythema Nodosum and scheduled me an appointment at a dermatologist in Boston. They fit me in just to see the red spots and my ankle. She wanted to do a punch biopsy, and scheduled one for the next day. When we got there, my mom talked me out of it; I was going through too much already, it would hurt and would need to heal. She thought it was better not to put my body through any unnecessary pain, so I left, undiagnosed.
The colonoscopy results left me with less options than before: 1) Surgery. 2) Clinical Trials. I didn’t like either option, but he put me on 40mg of Prednisone for the summer while I made a decision. I gained 20lbs and feared I would have “moon face” for my photo-ops that were quickly approaching. All my hard work wasted…
I lost 100lbs in 4 years, most of that in preparation for Hawaii.
The side effects sucked - weight gain, water retention, bloating, night sweats, acne, constant hunger - but I felt better than I had in months! I exercised regularly and I was eating better. I had to force myself to only eat every three hours, otherwise I would never stop! Lowering the dosage was difficult - fatigue, dizziness, joint pain, muscle aches, hot/cold, headache, mouth sores. One week I was so dizzy, I almost passed out at the mall and had a headache that lasted over two weeks. Once I was finally tapered off, the weight dropped off, but all my symptoms came back, with a vengeance.
Diarrhea was worse than ever, occurring for weeks at a time and almost always consisting of blood. Nausea would alert me to my oncoming menstrual cycle, always three days before it started. The cramps affected my bowel, resulting in painful, bloody diarrhea with intense nausea. I just couldn’t catch a break, nothing was getting better and Hawaii was only months away! I was seriously considering selling my tickets while there was still time. So I signed up for a clinical trial with Brigham and Women’s Hospital.
Low dose IL-2 injections daily for twelve weeks, pending interview and eligibility, including a sigmoidoscopy. Since she would only be scoping the sigmoid colon, I was not prescribed a colonoscopy prep and expected to perform an enema on myself the morning of. That was so not happening, so I bought the magnesium citrate I’d been choking down for years. It never works well, but I figured it wouldn’t matter for this kind of procedure.
I forgot about the train. Stopping off at South Station and running down the street to Brigham and Women’s trying to make it to the bathroom in time is so not ideal. Coming home wasn’t much better. Public transportation should not be taken when coming off anesthesia. Never again!
The following week they showed me how to inject my stomach with a two-inch needle. The next day I did it to myself and took home enough for the week, during which time I got the flu-like side-effects they had promised. I actually got pretty good at injecting myself, but the redness, swelling and bruising of my stomach was a little unnerving. She said it looked good, and the inflammation was going down.
Unfortunately, my condition was only getting worse. Every week I would be hit with some new aspect of the medication or my colitis. Taking the train in town was torture. Especially when there were delays and no promise of a bathroom in the foreseeable future. Leaving the house was a struggle. Working was impossible, but my boss was an asshole and I couldn’t get out of it. I used up all my sick time already and had a vacation coming up, so...
The constant diarrhea caused painful hemorrhoids that would not stop bleeding, forcing me to rely on cream and wipes for just a millisecond of blissful relief. It was absolutely awful…horrendous! I ended up in the bathroom thirteen times in one day, for which they recommended Imodium. It helped, but I felt extremely bloated and nauseas. I almost made it three weeks in the trial, but at the next check-in, I dropped out. Hawaii was in a little over a week and for the first time, I honestly didn’t think I was going.
Amidst all the chaos, red spots were popping up on my legs again, effecting my left ankle this time. Urgent care provided the usual tests, much slower due to a recent power outage and no access to medical records. I told him that my GI thought it was Erythema Nodosum, he Googled it, agreed, said the only way to treat it was to treat the disease and prescribed ten days of Prednisone. I was ecstatic! Ten days of relief, so close to Hawaii. Finally, some peace of mind.
I immediately felt much better on Prednisone. I got it check out early, hoping to avoid the ankle swelling, but over the weekend that’s exactly what happened. I had a follow up in a few days and they put me back on antibiotics since that course of treatment worked the last two times.
If I had any hope of getting on that plane the next day, I would need to wear something on my feet with a little more give than lace up shoes, offering more protection than the flip flops I’d been wearing outside, only having worn one on my last trip to urgent care. I had an epiphany the night before: slippers with a hard sole. I asked mom to stop at Wal*Mart before we went home and brought a sock to test my theory. It worked!
The swelling went down after the first dose of antibiotics. I stayed in bed, resting my ankle and binging Law & Order: SVU on Hulu, debating with myself whether or not I should go to Hawaii. Just the fact that I had to decide says a lot about where my head was at. It’s Hawaii! Who skips out on the trip of a lifetime!? Which I’d already spent $3,000.00 on. I might have been able to sell my tickets to anyone desperate to go or for extra photo-ops. I could easily cancel my hotel reservations, car rental and just cut my losses. Maybe even call the airline and beg for a refund…
I started packing around 9:00PM and finished around midnight, absolutely exhausted. I was considering taking a nap but my dad was driving me to the Logan Express shuttle in less than an hour. So I stayed up, going back and forth over my decision until I finally made my way upstairs, suitcases in hand.
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