Short Version of Our History:
This is our story of living day to day with chronic illness. My 16 year old daughter has had Chronic Fatigue for 3 years, Celiac Disease for almost one year, was diagnosed with Neurally Mediated Hypotension last week, and the story continues to evolve. Follow a mother’s rantings if you dare.
A Tad Longer Version of Our History:
This blog is the story of my daughter, Jessica, our family, and a daily chronicle of our experiences in living and coping with chronic illness. From time to time my posts will be angry, but I’m hoping that they will each contain a healthy dose of humor and hope. You simply can’t survive life without throwing in a bit of self-depreciating humor on a regular basis.
First things first. We need a bit of history. Sorry, this will be long, but necessary.
Our family consists of me (Lori), hubby and dad (Jeff), older son and brother (Wes) and finally daughter and sister (Jessie). We will all pop in from time to time.
Now the story. Jessie was your typical kid. She loves sports, participating in everything from mountain biking and horseback riding to soccer and softball. She played flute in the school band, and was (and still is) an extremely sociable, straight “A” student.
The first weekend of November, 2005 Jessie, then 12 years old, became sick with what we were sure was mono. Her best friend had mono at the same time. The only difference in their illnesses was that Jessie was plagued with a constant headache. Her friend recovered. She did not. We later found that she tested negative for mono.
By December we were having all of the blood tests, MRI, etc. with no answers. Jessie gradually became de-conditioned and began physical therapy. By the grace of God, we had a young doctor who recognized that Jessie could possibly have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). She was not only our doctor, but also became our friend and supporter. Jessie also began to see a wonderful pediatric neurologist who eventually found the right combination of medication to help control many of her symptoms. Her initial symptoms were exhaustion, insomnia, migraines, muscle aches, and joint pain.
During the initial seven months of being sick, Jessie was either confined to her bed or our sofa. (She ruined our sofa by creating a permanent indentation and we joked that when she got better we would have a sofa-burning party!) Jes was assigned a homebound tutor through the school system. By May or June of 2006, Jessie slowly built up the strength to get out of the house a bit and she was eventually able to go back to school in the fall of 2006. She would have relapses many times during the next two years requiring the use homebound tutoring. While she can walk, get out, and attend school, Jessie cannot run or participate in sports at all.
In February of 2008, as a ninth grader, Jessie became ill again, but this time with new symptoms. Over the course of the next 2 months it was discovered through an endoscopy that she also has celiacs disease. Simply put, she can no longer have any form of gluten (no bread, pastries, pizza, you get the picture). For most this is a terrible diagnosis, but for Jessie, it was like a death sentence. See, this girl of mine has always had the gift of baking, specifically pastries. Pastry chef was high on the career list. (Footnote: Jessie has since come to realize that there is a real calling for gluten-free pasty chefs, so all has not been lost)
In October of 2008, the migraines returned with a vengeance. We have since had two trips to the emergency room to break the cycle, relapses of CFIDS, ending with advise from her Atlanta neurologist to get her to a psychiatrist because the headaches just kept coming back with no explanation. Therefore, she must be depressed. My gut feeling was that she wasn’t depressed. I felt that something was really out of whack with her system or medication and with the recent diagnosis of celiacs, we were due for a complete overhaul.
Out of desparation, I turned to the internet and found the Hunter Hopkins Clinic in Charlotte, North Carolina. We had our initial appointment last week and were there for 5 hours, four of those being a one-on-one interview with the doctor. Many questions are still in the air as to her true, final diagnosis. While there, Jessie had the tilt table test and failed miserably, passing out after only five minutes. This resulted in a diagnosis of Neurally Mediated Hypotension. They took, what seemed like, her body weight in blood for tons of tests. The doctor found a pronounced heart murmur, which apparently had not been noticed previously. We will be going to a cardiologist this coming Wednesday for an echocardiogram.
Well that’s the MUCH abreviated (believe it or not) history of Jessie’s illness. If you’ve stayed with our story for this long, I must say that you are a real trooper and will be provided with stories and updates on a regular basis.