A.S. Face 0865: Jenn Winter
My name is Jennifer and I’m a 35 year old single mom living with my mom in Central Ohio. I was adopted at 6 days old and have never met my biological family. What little I do know of them consists of their first names, a little physical description, a tiny bit of nationality, why they gave me up and the fact that both families had no health problems. Yes, you read that right. BOTH families had NO health problems. When I was a little girl, as far back as I can remember, I could never keep up with the other kids. My parents enrolled me in everything. Soccer (I couldn’t keep up with the running and would often be told I wasn’t trying hard enough to run), baseball (I could/can hit the ball hard but running no way), baton (again, arm strength but no leg)… Finally my mom put me into gymnastics. I loved it, but I struggled. I just didn’t have the flexibility. Finally my coach tied my feet together with the belt of a robe and I did a somersault that day. It was our first indication that there may be something physiologically amiss with me.
Growing up I always had more than my fair share of boughts with ear “infections” that weren’t infected but were treated with antibiotics “just in case they were on their way”, bronchitis, stomach pains, legs pains, back pains and joint pains. I had what was assumed to be “exercised induced asthma” which felt like my chest wall caving in when I was forced to participate in gym, even when I had doctor’s notes. All along the way my school fought me. Back then, no matter what diagnosis I had my school didn’t believe me. It started with chronic fatigue syndrome. Then CFS/FMS. Then just Fibromyalgia. I had such bad reactions to people’s homes, the chemicals and such, that I’d try to have sleep overs and get sick and have to go home. And of course that earned me quite a reputation as well. No one understood. By middle school people thought I was just being a drama queen. We had to do a summer camp and when we got there I found that I was at the top bunk, next to a window with one pane of glass. You could move the window up and down, but no matter what there was one pane of glass and a whole lot of air coming through.
It was fall, bitter, wet air was coming through. I told my teachers that I had chronic bronchitis and I needed to be away from that window or I’d get sick and fast. I knew my body, even then. They told me that most kids wouldn’t whine about having the top bunk, that I should just be grateful. By the next morning I was shaking and could feel it in my chest, the air had sunk in. We had to walk in the creek all after noon and I remember feeling sicker and sicker. I tried to talk to a teacher, a parent, someone. And they all treated me like I was just a baby wanting to go home. I remember wondering why no one would listen to me, what was it going to to take. I found out the next day! It took me looking like death, because someone finally took a look at me and realized I was white as a sheet, soaked in sweat and shaking like a leaf. I had a 104 temperature and had started to hallucinate. They were forced to call my mother, who was beyond furious that it’d taken them that long to notice my fever. They still didn’t want to bring me home though, insisting on trying to give me aspirin and such, because we were so far away. When it hit 105 they realized a parent might have to make the trip.
When my mom got me to my doctor he was livid. When he heard that I had told them I couldn’t sleep by the window and they’d disregarded me he was furious and even called the school, that it helped much. Nothing ever did or would. Turns out I’d developed walking pneumonia and would be out of school for two weeks with a fever so high I couldn’t wear clothes. My misadventures with the school continued into high school. My kneecaps developed abnormally, so that they grew a bit too much on the side and tend to try to disclocate. My orthopedic surgeon decided he wanted me to use the elevator at my new high school because of my schedule, to try to lesson the wear on them while I used braces to try to get them used to staying centered. It was the end of the school year and the elevator broke, which wasn’t unusual though it should’ve been since the building was brand new. I told the school I needed it fixed because I couldn’t be using the stairs. They said I’d have to deal with it until the end of the year, because they doubted it could get fixed before then. I used the stairs for a couple days and I could feel my knees turning and grinding the way the doctor didn’t want them going. On the third day I come in and the superintendent’s daughter is waiting at the elevator on crutches and I say “Oh it’s broken” and she says “Oh they fixed it for me.” Oh of COURSE they did. She has a sprain.
I had a long term disability. Makes perfect sense right? (I know it’s our Dad’s differences. lol) That afternoon I was told by my gym teacher that if I didn’t participate in that last day of gym she’d flunk me. So I got up to walk to get a volleyball and my weakened knee did what? Full on dislocated in the middle of the gym. Knee cap cracks like a shotgun blast, I hit the floor screaming and it’s just one more thing. As the next year started my joints, back and fatigue level had gotten so much worse. I had been on a college bound course my entire school courses. I met the wrong guy and he abused me every way a guy can. He thought it was fun to punch me in my joints and make me cry. I’ve read that the trauma of these kinds of relationships can trigger fibro and stuff and if that’s true he was mine. I was a member of the FHA (vice president even). My symptoms progressed so badly that I had to get a tutor and finish the last two years of school at home. The school fought hard, but my doctor informed them about my disease and gave them brochures about it. He threatened to go the school board and the press and they gave in. In the years since school it’s been horrible. I was able to get onto SSi, which was a blessing. But I barely left the house until I was 25, when I decided to try to leave the house. A complete mistake, but that’s a whole other story.
I ended up getting pregnant which was a blessing in itself. I moved back home with my parents and had my daughter five and a half years ago. She’ll be five tomorrow (July 7th). My pregnancy wasn’t too bad I guess. I couldn’t keep ANYTHING down, including water, for three months. I lost a ton of weight. Then all of a sudden I started to swell, so my ankles and arms and everything were so full of fluid you could see your finger prints if you touched me. And during delivery my blood pressure shot up and hers down and I started to hemorrhage, but they stopped it that night. After she was about three months old new symptoms started. It started in my right hip. Horrible pain. I thought the nurse had hurt me when she’d pushed my leg back so I could push. I went to the doctor and they x-rayed my hip joint and found fusion. They sent me to a rhuemotologist and he gave me my Ankylosing Spondylitis diagnosis. I have the gene as well. I’m currently on 2 shots of Simponi a month, Diclofenac, 2 15mg morphine, 4 20mg Baclofen and they keep tinkering Cymbalta all the time. I’m still not sure it’s working. I don’t sleep and my flares are out of control. I’m seeing a pain clinic and they just did a nerve burning, which I’m not sure worked. I’m pushing for an MRI to see what damage has been done so far in my 35 years. What’s next?
Who knows. I’m just praying it doesn’t include my daughter being stuck down with this disease as well.
Ohio, United States of America