Have those words ever been spoken to you? Do you feel lousy or have symptoms you cannot get diagnosed? I am not offering you medical advice, far from it. Were any of you aware that Wednesday February 29th was Rare Disease Awareness Day? Maybe a few of you do have one. I suffer from something called Antiphospholipid Antibody Syndrome and Polymyalgia Rheumatica/Giant Cell Arteritis with Optic Nerve involvement. My biggest problem is I just have one seeing eye and am losing vision rapidly.
I believe my mother suffered from it as I never remember her being well and it seemed she was always in the hospital or "away." It seemed from my five-year-old mentality that she did get a lot worse after my sister was born. When my younger sister was just 13-months-old, I got up one morning right before Christmas and went into her room and I just remember the screaming, the sound of sirens and my Spanish relatives speaking so fast in Spanish at that time I could understand some but then there was the absolute stillness of no one.
My father remarried about eight months later and my stepmother was a kind, loving woman who I sometimes think she married my father in order to hide from something or someone. She treated us with love and put up with a lot. I remember being close to nine years old when my Mom took me to the doctor because I was always complaining about something and he telling her I would enter puberty early. We went home and had the talk but, by early, I do not think he meant a few months later. I started with constant migraines, constant fatigue and it was not a case of wanting to cut school, I loved school.
When we moved to Florida when I was 13 years old I got worse and was taken to other doctors but they and my parents finally said I was just just being overly dramatic. I was active. In those days you could ride your bike to the beach or go and do anything. Kids were outside constantly and not sedentary the way they are today. We had the world to explore and once I got to high school I was on the swim team and cheered for basketball. Although the cheering stopped when my headaches got worse and the fatigue was not just constant it was as though something was holding me down.
The first few days after graduation, and all that went with it, were magic. However, a few days later my world tilted on its axis. It stayed due to having to have may surgeries on one eye.
I had lost yet another mother and I wanted a family that I thought would be whole. I had my daughter and while I did not consider it a hard pregnancy I would come to learn it was. I had her by C Section and had to have a person to person blood transfusion. I developed an infection and was very ill after that and by the time I took my daughter home she was 3-and-a-half weeks old. She was an easy baby and a joy.
My marriage was not and three years later for whatever reason he thought having another child would help. It did not but I had a beautiful boy and the next day the pediatrician and a hematologist came in to tell me that the baby's bilirubin was extremely high and they would have to do a complete blood exchange. Now in those days, you may find this hard to believe but only the father could sign the consent form and since I was alone now with two kids that would take some doing. He finally came to the hospital to sign the papers and to be honest I think he may have seen him on two other occasions and that was fine with me.
Three years later I met a wonderful man and after about three years we were married and I thank whatever powers that be that he had the patience to let me grow up and put up with the varied illnesses over the years. The doctors had told me not to get pregnant but never gave me a reason why. I was only 30 and then that was just about the cut-off age. I had had an infection in the lining around my heart that summer and also had pneumonia. However, I was pregnant with a child I wanted terribly and my husband who from the day he met them treated my children as though they were his. One problem with the pregnancy is that I was literally allergic to the baby and it was unlike anything I ever experienced. I had hives and my body was on fire constantly and I had pain everywhere, not labor type pain just good old fashioned pain. In the middle of this we were completing a house. I gave birth the middle of April and for whatever reason it was a full moon and there seemed to be a lot of deliveries and more doctors at that time than before. I had a tubal ligation after the baby was born and later that night two pediatricians and another doctor came in and said he too had an extremely high bilirubin count and it would be a tricky blood exchange. I do remember he was written up in the New England Journal Of Medicine but came through and my family and I were just grateful.
Almost two years later my husband decided we needed to move outside of Bucks County and we started looking in the western Montgomery County. I knew nothing about the area but we found a beautiful two acre piece of ground in Perkiomenville and once again the home building began. I had my daughter who was doing well in middle school, a son in fourth grade and a toddler who had colic and croup from the onset.
One Sunday morning in late September we were walking up the hill from the pond when I felt this heaviness in my chest and legs and the fatigue that was always with me was worse if it could be. Somehow we made it home and I spent a night in pain but with so much going on felt I could not tell my husband. Finally around the time he would get up he sat up and looked at me and said he was calling my sister-in-law to come over and watch the kids. The next thing I remember was being in the ER of a hosital in Bucks County and I thank my lucky stars that the ER Doctor was a woman and to take me for a CT scan stat. I came to in the ICU with tubes going everywhere just as doctors were making their rounds and they started asking questions. I could not talk but my sister-in-law and husband were there and the questions were of the variety of, "she has three children, you are in the middle of building a house and she must have bad nerves." I could hear the ER Doctor come in with my scan that showed I had two Pulmonary Embolisms in my left lung and over the next few days they would discover I had phlebotomist, a dvt in my leg and while there would get another clot in the other lung. I was on heparin and when I finally was able to come home I was put on Coumadin. The problem was I needed increasing doses of it just to maintain my PT time and INR.
We moved and I found a doctor but I never felt well. We would build two more houses in the area and I would have an in-home day care and would be active in the community.
I never felt well. I would stay in bed all weekend to get ready for the coming week. I raised my granddaughter which was a child while not born of my body was born of my heart.
My doses of Coumadin were extremely high and over the years I would have another pulmonary embolism and would continue to feel awful.
In 2001 we would lose our daughter and I had been having trouble with my speech and I would have just total mind miscues where I could not remember where I was and I had started having seizures. I was tested by one doctor who suggested I needed more activity in a certain room and another suggested that because I was Spanish maybe it was mad cow. We came to the conclusion that due to everything that had happened it was PTSD and I sought help. They gave me other medication that seemed to help and our youngest son walked down the aisle. The seizures continued and more meds were given and I seemed to level out.
I had always done something and in 2002 started working at the Junior High. I knew most of the teachers and loved what I did but I was not well and I put on one of the faces of the broken mirror that had broken into fragments years before and whatever who needed to see what I was able to show them.
During Christmas break I was sick, really sick, and started bleeding from every orifice and my husband took me to a teaching hospital where I remained for three weeks and was seen by every doctor known to man it seemed and had every test. I at the time could not move. I could barely talk and one afternoon a team of doctors and medical students came in and gave me my diagnosis. Antiphosphilipid Antibody Syndrome with Polymyalgia Rheumatica/giant cell ateritis.
A friend who is in the medical field was there and told me it was no big deal and to just muster up and not be the disease. Okay, that worked for about two more years and I was NOT my OWN HEALTH CARE ADVOCATE and still knew nothing about the disease until after once again moving, this time downsizing.
I would see a new neurologist and he explained how it is like a line of dominos and once they start there is no stopping the things that can happen. My sister has lupus and one of my grandchildren started having seizure activity.
I started doing my own research and getting copies of any test, blood, eeg, ekg, scans whatever I now have copies. I thought my children should be tested and that caused the dismantling of our family. One son called my hematologist and she told him what she could and the others would rather not deal with it. This has naturally broken our hearts as my husband has PD and his own issues.
I now have optic nerve involvement and am getting an appointment with a neurologist down there that is the supposed guru of APS and I honestly feel by the time I get to see what is squeezing the optic nerve I will be seeing nothing but darkness through the veil of my tears.
That is why if you feel you are sick be YOUR OWN HEALTH CARE ADVOCATE. Only you know you. Do not depend on the medical system to take care of someone who has "But You Do Not Look Sick Syndrome." Take the internet and do your own disease research based on your symptoms and take your research to your doctor and demand to know why he is not testing you. Join a support group. There are many for almost anything and maybe you can join a research study. I am enrolled in the Sanford CoRDS study. Do your own homework. Keep your records and research and remember only YOU can take care of YOU! Do not wait years and have years of suffering. DO IT! Together we will take this new path of being our health care advocates and learn the many facets of doing so.