About three years ago, I was the picture of health. I was exercising daily, eating right, and getting plenty of sleep. I went to the doctor once a year. I had a small group of friends that I socialized with at least once a week. I was single, (divorced) but managing to work and take care of my home solo without much trouble.
After being single for 7 years, I finally met someone special. We loved being outdoors and started to travel together. One of our first vacations together was to the Grand Canyon. We had both been there before, but we wanted to go back and hike to the bottom. It was quite the adventure.
Later that year we vacationed in Cape Cod. We actually rented a Cape Cod style house out in the country. We drove so that we could bring our bikes along. We rode our bikes around everywhere and I brought my little wicker bike basket to haul groceries.
Looking at a map of the area, we realized that we were not far from a ferry that could take us to Martha's Vineyard. We decided that we were about six miles from the ferry at Falmouth, so we decided to bike there and then bike around the island all day. It later turned out to be closer to twenty miles away. We shopped, ate lunch and then rode the ferry back, and made it back to the Cape Cod rental just before dark. This little adventure may have been when and where I contracted Lyme disease.
Yes, we wore mosquito spray. No, I don't remember a tick bite. On the other hand, I could have been bitten somewhere else. It could have been in Indiana, years ago, in my own back yard.
Three years ago, something started to slowly change. I could feel my energy slipping away. One day, I woke up with what I thought was the flu. It was February and quite cold. I had a runny nose and a stiff neck. Eventually, the upper respiratory infection went away. (with antibiotics) The stiff neck did not go away. It lingered and got worse. The pain started to travel down my right arm and into my wrist. I went to the doctor a lot. I went to my family practice doctor, my on site clinic doctor at work, and immediate care doctors. My doctor decided that I had strained muscles and tendons painting walls in my house. I had been getting it ready to sell. My significant other and I were moving into a repo house that he had bought as an investment. It was only five years old, but needed some TLC before we could move in. We painted and rehabbed his house, too.
I went along with the diagnosis of a muscle strain, even though I expressed to the doctor that we had finished all of our painting six months earlier and my arm and neck didn't hurt while I was painting or even immediately after that. I was given prednisone and ibuprofen and told to get some physical therapy because I had a frozen shoulder. It got worse.
I went back to the doctor, and then I was referred to a sports medicine doctor. He sent me for an MRI and x-rays. It showed nothing. No damage. I was sent to more physical therapy. At the next visit my knees were swollen and inflamed. He numbed one of my knees, drew out some fluid, and had it tested for gout and psuedo-gout. He wanted to run additional blood tests. I suggested that he test for Lyme disease, MS, and Lupus. (My sister and brother's suggestion. My brother is a medical investigator. My sister had looked up my symptoms on a web search engine called Isabel and she came up with Lyme disease).
The sports medicine doctor phoned me with the results of the tests. The only positive test was for Lyme disease. He had done the standard ELIZA test for Lyme disease. It came back high positive for Lyme. I told him that I wanted a prescription for antibiotics right away. He faxed in a 7 day prescription and told me to come in for a second test called a Western Blot test. He explained that the test that he had given me for Lyme disease has lots of false positives and that he didn't think that this could be an accurate diagnosis.
In the mean time, I was not getting better. My prescription had no refills. The Western blot came back. I never got to see it. I was told that, "I only think that my legs are swollen." and then sent to an infectious disease doctor. He ran a few more tests and declared me free from Lyme disease. He suggested that I could be suffering from pre-menstral conditions or menopause, even though I had a hysterectomy nine years earlier!
By this time, my knees were undeniably swollen and I was in excruciating pain, especially at night. I couldn't stand without support. I was getting very little sleep. I could not imagine how I could continue to work and take care of my house and yard.
I was thinking of selling my too large house, selling some of my furnishings and moving to a much smaller house closer to work anyway. And then I met Tom, my significant other. We decided to move into his house which was about seven miles closer to work. I still would have a 1/2 hour commute to work.
I decided to visit yet another doctor: my endocrinologist. I have hypothyroidism and I thought that maybe this could be the cause of all of this pain and swelling. He said that my thyroid disease was under control and that I most likely had arthritis. He referred me to a rheumatologist who was accepting new patients.
She turned out to be a foreign doctor with a thick, Russian accent. She said that she thought that this could be cancer and wanted to run several tests. She then told me to get a colonoscopy to check for colon cancer.
My legs continued to swell and by now I was hobbling into work like a ninety year-old lady. I am a teacher, and staying upbeat, energetic, and enthusiastic was nearly impossible. Luckily, it felt better to stand than sit, so I figured that sitting around at home or staying in bed all day would only make me feel worse. My job, the students, and work gave me a distraction from the constant pain.
The arthritis doctor said that the tests for cancer and Rheumatoid arthritis came back negative. She said that I still had Rheumatoid arthritis, even though xrays showed no damage and tests were negative. She said that up to a third of patients who have Rheumatoid arthritis, don't test positive for it. She put me on methotrexate and told me to come back in a few weeks for tests. My liver enzymes would now have to be monitored for damage.
My symptoms got worse and spread to other parts of my body. I could no longer open jars, turn doorknobs, or open pill bottles without help. Dressing was difficult by myself. Simple chores were getting neglected because I did not have the energy and I was in pain. I had to wear wrist guards on both wrists to type, teach, and drive to work. Sitting in my car to drive was painful.
Cold weather was the worst. I felt cold all the time. The cold air made my joints ache even worse than before. Even rain caused my joints to inflame. I piled on the layers of clothes during the day, and blankets at night. Tom was thoughtful enough to buy me a heated mattress pad to keep me warm at night. The weight of the blankets felt like hundreds of pounds. My legs felt morbidly obese from the swelling and they seemed to weight a hundred pounds each.
I was resigned to my diagnosis of rheumatoid arthritis, even though no one in my family had ever had it. Was it caused by the flu virus I had caught in February? I began researching cures for arthritis. I asked my doctor about biologics. The methotrexate wasn't working at all. If anything, I was getting worse.
At one point, I told a relative, "I am not going to make it."