Tonight's picture was taken in May of 2008 during Grandparents day at Mattie's school. This was his first and last grandparents day, which of course at the time we thought we would have many years of them to look forward to! Pictured with Mattie is Leslie, Mattie's kindergarten teacher. Each year when I do my art series at Mattie's school I always see Leslie. In fact I saw her today as I set up for the second lesson tomorrow. It is hard to believe we have known each other for 9 years and Mattie is no longer part of this equation!
Quote of the day: It's often said that a traumatic experience early in life marks a person forever, pulls her out of line, saying, "Stay there. Don't move. ~ Jeffrey Eugenides
I have been going to physical therapy since March 7. I am now on my 13th session. Is it helping? Yes but I still have issues and the therapist now wants me to see a rheumatologist to get assessed for fibromyalgia.
I have known several people with fibromyalgia and it is interesting that all my doctors never mentioned this to me. I realize it is one of those rule out diagnoses because there is no test to confirm it. Yet it would explain many of my long term symptoms. When I researched the causes of fibromyalgia I found that it is unknown. However, researchers think a number of factors might be involved. Fibromyalgia can occur on its own, but has also been linked to being exposed to stressful or traumatic events. I did not need to read any further because I immediately got it! I would say my body hasn't been physically the same since Mattie died from cancer. It is like I live with different system failures at various times during the year.
Fibromyalgia is a disorder that causes
aches and pain all over the body. People with fibromyalgia also have
"tender points" throughout their bodies. Tender points are specific
places on the neck, shoulders, back, hips, arms, and legs that hurt when
pressure is put on them. The symptoms are widespread pain, cognitive difficulties, fatigue, sleep issues, emotional issues, and headaches. Naturally with many of the other health issues I contend with, there is no "cure." But it does require alternative lifestyle changes such as being active (I work at a desk all day and sometimes night, especially during fundraising season) and also having less stress.
Certainly from the outside running Mattie's Foundation may look easy, but it is like running a small business without a staff. If the Foundation does well, it is thanks to us, and if it fails it is thanks to us. That is a great deal of pressure to live with each year, especially when it is tied to the memory of our only child. As spring comes, I always say after the Walk, I will be able to catch my breath. But it never happens, and just like last summer, I already have things piling up on my plate such a coordinating a strategy session with our researchers, writing another book chapter, and the list goes on! All good problems certainly but my body always makes me aware of what I survived with Mattie and anyone who thinks childhood cancer just impacts the child is VERY wrong.
No comments:
Post a Comment