In May of 2000, Miles began experiencing some eerily familiar symptoms. Abdominal pains, bloody diarrhea, profuse sweating, fatigue, weight loss. He'd been going through a terrible amount of stress over some issues with his ex-wife concerning his sons and child support. We have always paid over the max amount, but she was convinced we were "hiding" money and wanted more. An audit of our home-based business subpoenaed by her cost us $1,000 we didn't have at the time, right before we were moving into our new home.
At any rate, we believe stress triggered his long-dormant condition, and sure enough, he was diagnosed in June with Ulcerative Colitis. He'd had it before, during his first marriage, and had been very close to having to have the entire large intestine removed and a colostomy bag installed. Then, it went into remission. And stayed away for nearly 10 years.
This is one of those diseases people don't like to talk about. It involves words like colon, rectum, diarrhea. So because people don't want to think about it, they tend to think it's just a minor disease. It is in fact horrific what it can do to a person. Basically what happens is the body's immune system begins to attack the lower intestine. It becomes riddled with ulcers and sores. Eating becomes a nightmare. Bathroom trips become a nightmare. And the medications used to control the disease are a nightmare all in themselves.
So the end of June arrived, and we moved into our new house. What should have been a time of joy for our family of 6, was fraught with concern for Miles's declining health. The house was also not what we thought it was, and required an extensive amount of work and money. We had planned a vacation to the west coast of Canada and the U.S. for the end of July, and when we originally planned it, we did so making a pact that we would let nothing stop us. We'd never been on a trip together, as money has always been an issue for us. Perhaps we should not have been so foolish to proceed, but we did so with the doctor's blessing, and armed with an astounding array of medications.
Our vacation to Vancouver was enjoyable. But I could see Miles was in a great amount of discomfort and not able to enjoy life as he always had. By the time we got to his sister's in WA, he was feeling worse. Rather than be reasonable people, we drove to our dream destination on the Oregon Coast. A hotel mis-booking had us arrive at Florence to no vacancies anywhere, and we ended up driving all night down the Oregon coast, with every lodging full to capacity. Our young kids slept while we white-knuckled it through the night on the winding coastal highway. Miles was declining steadily, and we took turns at the wheel. He was beginning to bleed quite heavily. We got to Newport early in the morning as the sun began to rise. Our rented cabin would not be available to us until 2 that afternoon. We rested on the beach, and Miles's blanched face told me things were not good.
We got to our cabin that afternoon, and Miles lay down, making frequent trips to the bathroom to pass clots. I took the children to the beach, determined they would have a degree of normalcy and enjoyment from our trip. I was thankful I had purchased across-the-border insurance because I knew we would end up taking him to a doctor. Little did I know it would be worse than that. By 10 p.m. that night, our first day on the coast, Miles had passed out. He had blood all down his legs. I ran outside with my cell phone (there was none in the cabin and the reception was terrible inside), and rang 911 Emergency. An ambulance was dispatched and the paramedics came in to tend to him. Thankfully our children slept through this whole ordeal. His blood pressure was dangerously low, and they started an I.V. A slip of the needle, and there was blood all over the couch and floor of our rented cabin. They rushed him to the hospital in Newport. Suddenly, I was alone in a strange place, and I was terrified. Later, I called the hospital and got to speak to the attending doctor. Miles was stabilized but would have to stay a couple of nights. I cried. Then I got down to scrub the blood away.
The next morning, the kids' round little faces stood over my bed. "Where's Daddy?" I had to explain to them in terms they could understand what had happened. We got ourselves up and ready, and went to see him at the hospital. He was so thin and pale. I felt such a sense of loss and guilt, that we had taken this trip and that it was not shaping up to be the getaway we'd planned. The kids and I spent the next couple of days in and out of the hospital, visiting Daddy. I made sure they enjoyed the trip, taking them to the wonderful Aquarium and beaches. They missed Daddy, but they seemed OK.
Then, at a time when things could not possibly have gotten worse, they did. The insurance company refused to cover Miles's stay in the hospital because his condition had been "pre-existing." Coming from a place where we are accustomed to socialized medical insurance paid on a per-income basis, just a few hundred dollars a year covers anything you'd ever need, this was a real shock. We had to put $1,000 on our credit card before leaving the hospital. And the bills were still being tallied up so we didn't even know our total yet.
Miles was released with the instructions to "do what you can do, but don't overdo," so we went ahead with our trip, visiting the Undersea Gardens and the Sea Lion Caves, and beaches. A couple of mornings later, Miles wasn't feeling well and was bleeding again. He told me and the kids to go ahead to the beach, and he would rest and use one of his anti-inflammatory enemas. We took off for a few hours, and I returned to an empty cabin. My heart jumped to my throat as I saw the kids' whiteboard propped on the couch with the message "Blacking out. 911 Call. Sorry. M." scrawled on it. Oh no!
He'd left the cell phone on the table, so I went outside to call the hospital. I was informed he was in ICU and needed a transfusion. The kids and I packed into the van to drive the 20 minutes to Newport and back to the hospital. We stood at his bedside as they started the first of 4 units of blood he would need until his blood count was acceptable again. The care he was given in Newport was phenomenal and the people were wonderful. As he says, if he had to be sick anywhere, it was a pretty good place to do it.
The children were quite taken aback at the sight of their big, strong dad lying white as a sheet in the ICU, wired for sound everywhere. I was devastated this could happen to the man I love. Then I heard the ordeal he'd been through while we were frolicking at the beach. He'd gone outside to call the ambulance, and had inadvertently locked himself out of the cabin. He'd had to crawl outside because he could not stand up without getting faint. He had to crawl back up the stairs to find the door locked, and his wallet and medications inside. He crawled around the deck and popped a window screen off and climbed into the cabin, falling over a couch, and then finding the markers and white board to scrawl the note to me. It's comical now, but I was horrified at the time!
Miles spent three more days in hospital as the $$ racked up and up. I insisted that as soon as he was well enough to fly, that I put him on a plane back to Canada, where the health care cost us nothing, and I would drive the two days home with the kids. Later, Miles decided that since it was only about an 8-hour drive to the border, he could handle the van ride. We were basically breaking for it at a time when he should still have been hospitalized.
What a sight it was, all 5-foot-nothing of me hauling suitcases, toys, coolers, etc. onto the rooftop carrier of the van. I had to pull it up to the deck of the cabin, then climb on top. I am woman, hear me roar! All set for the trip the next day, I tucked the kids in and enjoyed a couple of well-earned beers. What a bust the trip had been. The kids enjoyed lots of fun and lovely places, but they would rather have had their dad with them. I felt lonely and empty and so much concern for my husband. Got into thinking all about the fragility of life, and how I was definitely not ready for him to break the surly bonds of earth. Not for decades, centuries!
The trip back to Canada was uneventful, and Miles and I breathed a sigh of relief as we crossed the border. It took us a couple more days to get home as all the traveling was too much for Miles. Once home, he was given new medications and ordered home indefinitely.
Things just turned upside down. We owed the hospital in Newport more than $12,000 Canadian. Money we don't have, and probably never will. We had just moved to a newer house, and our mortaged had doubled. Now we were faced with going on disability. I began to step up my writing work to fill in the income gaps. Once Miles was better, he could care for the kids as I parked before my computer, writing newspaper articles I freelance to the city paper.
It was tough for me and the kids. Their dad's poor health dominated the household. He could not play with them or carry them as he used to. We lived very much inside the house during a beautiful summer and fall when we normally would have been out and about much more. The kids became anxious and out of sorts. I finally vowed to spend more one-on-one time with them and be more up. Things improved. Later in August, Miles had another scope, so sure he was improving, but things were worse than ever. He went on an immunusuppressant superdrug, Imuran, and stayed on the Predisone. The Prednisone on a long-term basis like this does terrible things to the body. His joints were disintegrating, his muscles wasted, and his face puffed out like a blowfish due to a side effect called "lipo-dystrophy" - which means fat is deposited in weird places. Especially the face.
After two months on the Imuran, he finally got another scope which showed near-miraculous improvement. Just in time, as our benefits had just been cut off, and we have been swinging without a financial net. E-bay auctions and my writing bringing in just enough dribs and drabs to keep ourselves fed. It's been very scary, unpleasant, terrifying journey.
Miles starts work again soon part-time, and will move up to full time. We are steeped in near financial ruin and don't know how we will get out of the hole. Miles has to take Imuran for two more years. But at least we have our health! Such as it is, for now. And each other.
For more about Ulcerative Colitis, check out these sites:
http://www.niddk.nih.gov/health/digest/pubs/colitis/colitis.htm
http://www.ccfa.org/Physician/colitisb.html
http://www.personalmd.com/news/ulcer_10252000.shtml
http://prefdev.ucsd.edu/uc.html
(Healthy tissue vs: non) http://www.mayohealth.org/mayo/9512/htm/ww5r325.htm
(Image of severe UC) http://geocities.datacellar.net/hotsprings/falls/7780/images/uc.html