It took Tri-State member Holly Counihan over two years to receive a scleroderma diagnosis. Like so many others, Holly spent those years in excruciating pain and confusion. In addition to living with scleroderma, Holly is also an avid traveler and adventurer. Read our interview with Holly in the current issue of Scleroderma Exchange. Below you'll find a short memoir Holly wrote about her journey towards finding a diagnosis.
In August of 1999 I was diagnosed with systemic or ‘defused’ scleroderma. I was overjoyed to finally have a diagnosis, any diagnosis, as it had been a long road to that moment, including ten misdiagnoses and untold pain and anguish.
My story begins two years earlier, in early 1996. I began to notice that my hands would occasionally turn blue. I thought it was from holding a cold can of soda or water. Then I began to notice that my lower legs and ankles were turning yellow and the skin was shiny and tight. Next I noticed I could not walk as fast or as long as I had in the past. My fingers were the size of large, fat sausages, the skin taut and shiny.
Prior to this point I was a very physically active person and went to the gym at least four times a week. Now I could barely drive myself back and forth to work. My breathing had become more and more difficult. My husband and I are great travelers and adventurers. We had just planned a hunting and fishing trip to South America. As we would be in a malaria-infested area, we took an anti-malaria drug with us. It seemed to me that the only time I felt good on that trip was when I was taking these drugs. My energy level was almost non-existent by the time we returned home.
One day while standing in front of my computer at work, a co-worker (who was also a nurse) confronted me. She asked me if I knew where I was. Apparently the look on my face was the answer she dreaded: I didn’t know where I was or who she was—and I had known her for 25 years. She called my husband and he came to collect me. After that, I had a difficult time going to work. Thank God I owned the business and my employee was a saint!
My husband and I began the rounds of doctors. First we went to my primary care physician. He thought I was a hypochondriac! I complained of a constant pain in my left thigh and a pain in my left hip, as well as a shortness of breath. I then went to a teaching hospital in central Connecticut. Their rheumatologist told me I was “fat and lazy”. Next I went to see their infectious disease department. They told me I had Lyme’s Disease. It’s true, I did have it. My vet had diagnosed me a year before. They took so much blood from me that I passed out behind the wheel of my car on the interstate and ended up in a grocery store in a daze. The cashier was able to get me some orange juice and call my husband who once again came and got me.
Now the trips to the emergency room began. I was having more and more trouble breathing. Back to the central Connecticut hospital emergency room. This time they said I had Syphilis! The rash that I had was symmetrical and the intern thought that Syphilis was the cause. In actuality, the real source of the rash was a reaction to the antibiotics I was taking for an oral infection! This was the lowest point in my life. I remember going into the garage and looking at the gas for the lawn mower. I wanted to drink it and get my life over with. I knew I could not go on. Not much longer.
My next doctor was a Lymes’ expert. He examined me and said that yes, I had contracted it, but it was gone. He thought that since I had been to so many foreign countries I had perhaps contracted some strange and exotic disease. More blood work. No results. More titers.
I broke down and cried to my best friend Donna. Her husband had been very ill and they had gone to Boston for help. She told me I was not a hypochondriac and that she would ask her husband’s doctor for a referral to a doctor who might be able to help. Next, I went to see Dr. Susan Davidson at Brigham Women’s Hospital in Boston. She asked me to bring my file. I brought all of my test results. I had 4 or 5 Lymes titers, blood work, stool samples—you name it. She spent 45 minutes reading my file and then entered the consulting room. She was wonderful. She told me that I was “grievously ill” and that my insurance was not taken at her hospital. We discussed the possibility of my having Lyme’s Disease again and she said “no”; but if I was insistent, she would get me an appointment with the man who isolated and discovered the disease! She was encouraging and told me to go to Yale, where my insurance would be taken.
With the hope given to me by Dr. Davidson, I found a new primary care doctor. He treated the tobacco workers from the fields and he knew Lymes’ very well. He said that I might have had it, but not anymore. He called Yale, faxed my records, and I was on my way to yet another doctor, more blood work, and more heartbreak. Or so I thought.
My dear friend Michael took me to my first appointment at Yale. By this time I was so ill I could not drive. I could not remember the names of things or the names of some of my closest friends. My first appointment at Yale was with the head of Rheumatology, Dr. Linda K. Bockenstedt. She had already read my file.
She was prepared and she examined me from head to toe. I do remember this. She asked me if I could walk backwards on my heels. I could not. She asked me if she could put water on my cuticles. She then looked at my fingers. “Umhum,” she said. Then we sat down and talked. She asked me hundreds of questions. When she was done, she said that she had reviewed my titers for Lymes and that there must be a mistake in the test results. She said no one had as many something-or-others as I did. I said that I had had lots of titers done and that I was sure there were two different labs involved. Sure enough, two different labs provided the same exact results! More “Umhums” and now she said we needed more blood tests. She also sent me to see the head of infectious disease, Dr. Frank Bia. Dr. Bia asked more questions and took more tests. Only three tubes of blood this time. Thank God for Mike, because of him I didn’t have to drive home. Dr. Bockenstedt said, “I’ll see you in a month”.
I knew that I couldn’t make it that long. I was sure I would be dead by then. It was so difficult to just exist. At this point in my life I was laying on the couch for 20 hours a day, trying to work 4. Even that was too much. I finally stopped working. After two weeks, I called Dr. Bockenstedt and told her that I couldn’t wait any longer. She made an appointment immediately. When I arrived, I was with my friend Betty. My husband had taken so much time off from work that I had to ask friends to take me to my appointments. I was so grateful to have Betty there, knowing that if the diagnosis was bad I would stop listening somewhere along the line. Betty had her pen and paper ready. When we entered the examination room five students and Dr. Bockenstedt met me. I remember the first part of what she said: “It is our consensus that you have systemic scleroderma.” I had no idea what that meant, but I was delighted that I had something that someone knew about! She then explained what it meant in technical terms. She told me what could happen to me and what my life would be like in the future. She mentioned that one of the problems with systemic scleroderma was that it caused, in certain cases, a person to no longer be able to digest their food and the nutrients would not travel into the blood stream and a person could starve to death if they were not fed intravenously. I stopped her. I said, “Dr. B, you don’t know my family or me. My Grandfather, Michael, came from Russia in 1915. In fact, he walked from Kiev, Ukraine all the way to St. Petersburg, Russia. He then signed up with the Canadian Railway to come to Canada to build the TransCan railway. Why? He was starving to death in the Ukraine. My son is one of the top graduates of the Cordon Bleu in Paris, how could I starve to death? My Grandfather came to this country to survive. I will too.” I asked her what I needed to do to stay alive. She said she would give me the medicine, told me to “put my affairs in order”, and that if it did not work I would be dead in 6 months.
It was the longest six months in my life. I did it one day at a time—sometimes, one minute at a time. Little by little, slowly but surely, I got better. It was an infinitesimal recovery: so very slow. I saw Linda once a week, then bi-monthly, then monthly, then every three months and now, 12 years later, twice a year. She began my recovery with me. I wrote down my questions for her. I researched my medications so that I took them correctly—some with food, some at night, always the correct way. Anything she told me to do, I did it. I did not interpret her instructions; I implemented them. We became partners in my recovery. Yale is a teaching hospital and I am a study. I cannot speak highly enough about the fellows, the staff, and Dr. Bockenstedt. I know in my heart that, had I not arrived at the doors of this institution, I would not be writing this story today.
On the second anniversary of my diagnosis, I was sitting in the departure lounge of Johannesburg International Airport, heading for Mozambique with my husband to hunt wild game in a wild country. Whether or not you agree with hunting is irrelevant. What is relevant is the fact that I was off my couch, breathing and living life.
When I finish this story, I will switch my computer over to the Internet to continue the plans for my 60th birthday celebration next year in Israel, followed by a month-long trip to South Africa and Namibia.
Have there been bad times? Sure, but nothing brings out the best in life than the threat of having that life removed. Hope is what keeps me alive and hope keeps me going. If I could say one thing, it would be: “Don’t give up: NEVER, EVER GIVE UP.”
Holly F. Counihan
Holly offers her help and encouragement to anyone who wants it. You can email her at firstname.lastname@example.org.