Our Story : A long time ago, in a far off land.....

Actually, our story began in 2003 in Ashland Oregon - that's pretty far from Wisconsin! That was where we lived when my daughter first got ill. I am going to go lightly on some of the details because they are her life story and she is not yet ready to share the details with the world. I will share enough so you realize, we have lived the life of severe Chronic Fatigue Syndrome (CFS), the challenges with the medical system in getting someone to pay attention and make a diagnosis and help with treatment.

These conditions affect people of all walks of life, all socioeconomic levels. It has a devastating effect on the person with the condition and the caregivers. I know it changed our lives - forever. But - as my daughter says - it's been a "sick gift". For all the sadness and loss, we have learned great things about ourselves, each other, internal strength, courage, and life.

 

How it began

She first got sick with shingles! She was hit in the eye with a tether ball and developed shingles in her eye. That kept coming back every month - about 3 times. Then it stopped until the next January when it started again, every month. Each time she got it, it took longer for her to recover. Then she just started being sick - sore throat, swollen glands, fatigue, headache, sleep problems.

It took time but eventually, it became clear that she had Chronic Fatigue Syndrome, that was in 2004. She already had dizziness with standing but it wasn't severe then. We had our share of doctors who went between saying it was all in her head, "go see some other doctor, I don't know who, just someone else" and those who thought it was in my head, the mother!

One day in 2006, I was having at a business lunch with old friends in Baltimore and they said it sounded like a friend of theirs - who got a diagnosis of CFS. So, I came home and took her back with me to Baltimore, Maryland to see Dr. Peter Rowe who diagnosed it as CFS. She was diagnosed with POTS in 2008.

She would get worse in the spring, recover in summer and get to school for the fall, until she hit 10th grade. That year, she only made 3 days. She was homeschooled and pretty much homebound since then, which has been almost 6 years.

She became bedbound not long after that and was bedbound for about 2 years. She had home OT, PT and SLP. She saw physical medicine physicians. But no one really knew what to do that would help. She could make a doctor appointment about once every 2-3 weeks for a while. Then, about 2010, she slowly started to recover with the help of a dedicated, skilled occupational therapist. It took 2 years before she progressed to being able to do more, to start actual rehab exercising in spring of 2012. She is now improving slowly.

 

The Impact on Our Lives

She has missed nearly all the high school landmarks. She was not able to do school work because of the severe brain fog and fatigue. She is waiting to learn to drive. Her friends from early high school have long moved on with their lives. She has missed most family gatherings and lives a pretty solitary life - with just me and a great neighbor.

Our cats were incredible companions for the last 16 years but hers was the last to pass over just last week. Most of the rest of the family still don't get it. Although we have tried to share more of it because of the family history of hypermobility and Ehlers-Danlos Syndrome, which some of the others have signs of.

I have changed my life work to be able to take care of her, to take her to appointments, make sure she ate, especially when she had her nights and days turned around and was up all night. I do most of my work consulting from home. I am a single parent, caring for her and supporting us, with help from her dad with medical insurance and medical expenses. I have also had to learn how to find joy in each day - to accept where I am today and how to unconditionally love myself and my daughter.

 

Where we are today

She is working hard on her retraining program, working everyday to have hope and make new dreams. She is starting to get out, at least to go to more appointments and over to the Y to use the recumbent bike.

I have found time to share what we have learned here. The last 6 months have been very enlightening.

We are both starting to wonder - what's next for us! Where will life take us next? We both want to rekindle our fun traveling, exploring ocean tidal pools and finding waterwalls in the forests. Then again, we have only just begun to explore our artistic skills.

 

    Wishing each of you - love, peace and "Joyful Living Today"

Kay E. Jewell, MD

    Mother, Caregiver since 2004