Alex’s Story

On Saturday, August 14, 2004, I was visiting my grandparents in North Dakota.  I was with my family and we were planning on returning to Wisconsin the next morning.   I was very excited to get back home because my sweet sixteen was Monday and also happened to be my golden birthday.

I first started to feel sick at around lunch time that Saturday.  My grandma and I were having lunch in Winkler, a small city in Manitoba, when I noticed my hands were really puffy and itchy.  It was hard for me to get my ring off.  I thought maybe I was allergic to something, but I wasn’t really sure.  At the time I had been using Tampax Pearl regular absorbency tampons for a few days.  I had seen the warning on the box, so I was always careful to not leave them in for more than 6 hours.

Since it was our last day in North Dakota before we had to drive home the next day, we went four wheeling at my Uncle Omar’s farm.  I love four wheeling, but I was riding around and my head started pounding so bad that it was unbearable.  Eventually we left and headed back to my grandma’s.

My grandma made a birthday dinner for me and I remember feeling miserable but trying to put on a happy face.  After dinner I started feeling sicker than I could even imagine anyone feeling.  My grandma thought maybe I had the flu.  I had a 102 degree fever with the chills really bad.  After dinner is when things started to get really blurry.  I remember it began to be difficult to move my head and look side to side.  My neck became really stiff.  I remember wrapping up in a blanket because I was so cold and then waking up a little while later and the blanket was soaked in sweat.

We left really early the next morning, Sunday, August 15.  The ride home is very foggy.  I remember not being able to relax or lay down because my neck was stiff.  I was riding home with my step dad and brother and they didn’t think I was really that sick.  My step dad said I probably just had cramps (in my neck apparently).  I remember feeling angry that no one would believe how horrible I felt.

Twelve hours later we arrived in La Crosse, Wisconsin.  My mom had known how sick I was because I had been talking to her a lot the day before and while we were riding home.  She met us as soon as the car pulled into the driveway and insisted that I go into pediatric urgent care.  I agreed, because I felt so horrible, but I also knew I had a dance team meeting that night.

Luckily, the doctor I saw in urgent care noticed immediately that something serious was wrong.  I had such low blood pressure that it didn’t register on the machine and they had to do it without the machine.  I also had a sun burn-like rash all over my body, and still couldn’t move my head.  They admitted me immediately, and told my mom that they had to get me on antibiotics as soon as possible.  The next few hours, things got a little foggier.  I remember being upset because I didn’t want to be in the hospital for my birthday the next day.  I was scared because they did a spinal tap to check for encephalitis and meningitis.  After the spinal tap, they learned that I had been menstruating and they took a vaginal swab.  They were not sure what was wrong; they just knew it was bad.

On Monday, August 16, my birthday, I started to feel better.  It wasn’t until Tuesday that they had gotten the lab work back and found staphylococcus aureus bacteria on my cervix and determined that I had Toxic Shock Syndrome (TSS).  I was sent home Wednesday, August 18, and began recovering at home, excited to start my junior year.  Two weeks later, on the second day of school, I felt really sick and I came home from school.  I had since gotten my driver’s license, so I could drive myself.  My mom took me to the doctor and I was diagnosed with mononucleosis and because of my recent serious illness I was admitted for another three days.

I missed a lot of school, so a teacher had to come to my house for that entire semester.  I worked it out with the school that if I came to school for two hours a day (Spanish and French, because the teacher sent to my house only covered core classes) and did the work at home, I could remain on dance team.  My fellow dance team members at the time gave me hope, something to get my mind off of feeling like crap all of the time.

In the spring of 2005 I was diagnosed with asthma and then in March of 2006 I was seen at Mayo in Rochester and diagnosed with Chronic Fatigue Syndrome.

Today, 7 years later, I am still in school.  I am working on my teaching degree with a Spanish specialty and happy to be alive.  I still get sick fairly easily and a little nervous about what lies ahead for me health wise.  This cause is very near and dear to my heart.  I never thought at 16 I would have to go through an ordeal like this, but maybe it was for a reason.  I was lucky, some young girls will never get the chance to live their lives.

Comments

  1. Wow. Thanks for sharing your story, Alex. It sounds like you were very lucky!

  2. Leanne Strong says:

    This could really be helpful to other girls, Alex! I have never had Toxic Shock Syndrome, but I used to be SO afraid of it that I wouldn’t use tampons AT ALL! I talked about it with a nurse practitioner at my doctors office when I was 14, who helped put my mind at ease. I’m still a little bit wary of TSS, but I do use tampons when I’m on my period now (even when I’m not swimming). I do take the suggested precautions, though (ex. changing my tampon every 4 hours or so, not using a bigger tampon than I need, using pads at night, only using tampons when I’m on my period). Even though I do what I should, I still watch for signs of Toxic Shock (ex. Fever, puking, diarrhea, sore throat, muscle pain, rash that looks like sunburn). I have also fairly recently started using organic tampons because I have heard that they might pose less of a risk for TSS. Even then, I still watch for symptoms of Toxic Shock, because things aren’t always exactly like they say they are.

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