Life as I knew it. That about sums up the thoughts I have every day. I am a thirty-four-year-old wife and mother of four. I divide my life into two different time periods: before I got sick and after.
My life by no means has ever been what one would call normal. I was diagnosed and treated for Reye Syndrome, which caused liver failure and brain swelling, at age eight. I spent two weeks in the hospital, one of which I was in a coma. There were eight others who were brought in with the same symptoms, but I was the only one to survive. I was the lucky one to have gotten the fresh-out-of-medical-school resident at the time of entering the emergency room. I survived that time with no lasting problems. I went on to live life and never really reflected back on that time much.
I now fast forward my life to age twenty-seven. I started seeing symptoms like blackouts, migraines, and just being plain tired. My doctor started treating the symptoms as they appeared. There never seemed to be a great deal of alarm until I started having seizure-like activity. My mother's mother-in-law died of epilepsy but I brushed off the test that would later show positive for a seizure disorder.
In the fall of 1997, I suffered a grand mal seizure that lasted twenty-five minutes and almost claimed my life. My husband walked in on this and turned me over just in time. I knew then I needed to seek an answer. This is truly where my fight began.
In the process of testing they found my blood pressure to be 240/180. I suffered a mini stroke and had therapy for six months to regain the use and mobility of my left arm and leg.
Time went on and things went downhill fast. They could not get my blood pressure under control. Medicine after medicine, specialist after specialist, and things were not getting better. My doctor was stunned and scratching his head in disbelief as to what was taking over my life and body. This man, my doctor, who did not ask for me to walk in his office, sat at my hospital bedside and cried with me and has fought for me from day one.
I spent a year bedridden and could not tell you the first thing about that year. My blood pressure fluctuated so badly that my body had no idea what was normal for me. Keeping my blood pressure under 180/125 proved to be a challenge for every specialist I saw.
Over the next six years, and after seeing two hundred and thirty-five doctors, internists, specialists, and teaching hospitals, life went on. My medical file grew, but no answers came. I was being sent in circles from one doctor to another. I am very lucky to have not had one doctor say to me, "There is nothing wrong." They saw it. They dealt with the symptoms, but the tests were just not showing anything.
"How could that be?" seemed to be my famous words. There has to be something wrong and something we can do about it. I went from playing kickball, advising cheerleading, running, being involved with my family, to constant pain, fatigue, blood pressure falling upon standing, dizzy spells, blackouts, weakness, and episodes that would always take me to the emergency room and take weeks to recover from.
It seems my blood pressure was the center of it all, so that is where we always started. I could not take the anti-inflammatory drugs due to my blood pressure. I could not take any over the counter allergy medicines. Everything came back to the same starting point: "We have no idea." The doctors knew they had to bunch all my symptoms together and they knew they were all the result of one thing, but they mimicked so many diseases. With each new thought and test came more puzzles and confusion.
Not only was it hard for me to live my life, but I also had to deal with watching my family suffer with me. My children were having a hard time. My husband, once always supportive and caring, turned frustrated at watching his wife and someone he loved, suffer. I decided it was much harder for me to continue with the testing and seeing doctor after doctor and coming up with the same answers : none.
The family we lived close to started to doubt that my illness was real. This left little room for support. I had to be crazy or it was all in my head.
One night after a very big episode, my husband took it upon himself to call my doctor and start testing again. I was angry and hurt by the fact that he did not have to be poked and prodded. I did. I had to deal with the telling of my story over and over. The changes in medicine that never came easy as I am very sensitive to medication. But, after realizing the pain my family was in, I agreed. We started again in Pittsburgh, Pennsylvania, and with a great deal of prayer. I am again armed with my medical records, too heavy to carry, and a very negative attitude of "here we go again".
I liked the doctor I saw. He was very caring, funny, and determined to find an answer for me. But that involved more testing. I started having tests, that, believe it or not after six years, I had never had before. I knew this doctor was on to something. After the second visit he labeled me with something called autonomic nervous disorder or dysautonomia. The first thing I said was, "Huh?" This is a failure of the autonomic nerves — anything your body does naturally with out thinking such as, breathing, blood pressure, gastrointestinal, motor skills, being able to stand without being so dizzy you faint, and irregular blood pressure.
However, this was only the beginning. This was not the primary cause for my health problems. I was sent to a new rheumatologist. I had seen at least ten others before. On a hunch, I thought I had something known as Mixed Connective Tissue Disease (MCTD). During my first visit with the new rheumatologist he said he did not feel I had MCTD, but he thought I had signs of scleroderma so he sent me to a dermatologist. The dermatologist took a skin biopsy, which I hadn't had done before. If the biopsy did not show anything, the next step would have been a bone marrow test. During the skin biopsy I had problems with clotting. I bled for thirty minutes and it took four doctors to control it.
I had always thought that when they found a reason for my illness that it would be an autoimmune problem. My skin biopsy results showed signs of mixed connective tissue disease (MCTD)along with myositis. This diagnosis has only recently come over the past three months. I still have a long road ahead of me.
My blood pressure medicine was quadrupled in hopes we could regulate it. They say I may have a hard time with all the treatments for this because my blood pressure spikes very high.
They have not identified a "primary" disease yet or one that stands out over any other. I continue to have very bad episodes that confine me to my bed for weeks. I have to use a wheelchair for long excursions, and family trips. I carry a blood pressure monitor machine with me and a lifeline of medicine also known as my "nitro pill." We have to know where all hospitals are when we travel. We are learning to function normally as a family.
This diagnosis is a bittersweet one for us. Yes, after seven years of hell, we now have a name. We thought a diagnosis would come with a pill or a cure. My family struggles daily with the stress of having a sick mother and wife. It has taken its toll on us all. We not only fight daily for strength and courage, we fight for hope, understanding and love.
I truly believe in the grace of God and the blessings from above. I believe God guided the doctors in diagnosing this very rare disease.
Recently my nine-year-old daughter started showing signs of an autoimmune disorder, and I am once again terrified. But this time I am armed with knowledge and wisdom. Will the past six years become a path of knowledge to help my daughter and to keep her from struggling like I did? If so, it was all worth it to me.
I lost my main support person in my mother a year ago and I greatly miss her. My father remarried and now does not talk to us. My husband's family continues to be not very supportive.
I have a very loving husband who tried without fail to understand and help me with the constant pain and disabilities. I have my four beautiful children who remind me what life is about and how to stay grounded and have strength to live. I have a wonderful sister who lives far away, but her daily e-mails and gifts of love and encouragement reminds me to see my blessings in my everyday struggles.
I continue to have good days and bad, and very bad episodes as all of you do. My symptoms include (but are not limited to) high blood pressure, seizures, muscle pain and weakness, joint swelling, vision problems, gastrointestinal and pulmonary difficulties, fibromyalgia, lumps under my skin, stiffness, and the list goes on.
If I can help prevent one person from suffering like I have, my fight will have been worth it. God bless all of you who suffer and survive a chronic illness or who have to see your loved ones suffer.
So in ending my story I will tell you my new nickname is Lucky. Lucky to have had three rare diseases in one lifetime. I like to see it as being blessed.
New email address needed
Old Email Prefix: lynn
Story edited 10-13-02
Story posted 10-15-02
Email note posted 01-24-05 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
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