I was thinking over the last couple of days about the frustrations we have faced and are facing with the treatment (or lack thereof) for Frances' numbness in her arms and hands. Frankly, I was almost to the point of giving up. If two neurologists and a battery of tests can't find anything wrong with her, who was I to continue to question it?
At that point, I took a walk down memory lane. Another walk of frustration with doctors. With accusations of psychosomatic illness, and uncertainty of treatments. This was a walk I took at a similar age, with my parents. with a very different set of symptoms, causes, and outcome.
When I was in my early teens, our whole family began experiencing unusual symptoms, with aching limbs, severe headaches, nose bleeds, "foggy" brain, and for my mother, repeated miscarriages. Several doctors just blew us off, saying that it was "in our heads," or that we were making things up. Right. At one point I was tested for Rheumatoid Arthritis. I didn't have it, even though the doctor told me later he could have sworn I did, based on my symptoms.
I remember the horrible migraine-like headaches after church EVERY Sunday. HORRIBLE pain in my legs, making me want to curl up in a little ball on the floor and cry. I remember the accusations from the doctors, and the lack of treatment. "Here, go home and take some Ibuprofen. I'm sure that will help."
Finally, when I was in my freshman year in college, and suffering even more from the aching limbs, headaches, and "foggy" brain, we found a new doctor who actually listened to us. We went to see him, and he BELIEVED us...and not only that, but he had an explanation for what what going on!
It seems our family has been exposed, at some point, to some toxic levels of something that set in motion strings of reactions to chemicals. Some foods bothered me, but mostly it was environmental chemical sensitivities that were affecting me. Things most people took for granted....PineSol, bleach, perfumes, deodorants, gas fumes, lotions, pesticides. Finally, with an explanation, there was a method of treatment that HELPED!!
I remember my sense of freedom from the pain. AMAZING relief. I could think again, without the fog! I could sleep without the pain....I could be normal!
And now, after that little walk through my memories, I remembered WHY I am fighting this fight. I love my daughter. I want her to be able to do things in as normal a way as possible. I want her to be free of the stigma...or to be able to overcome whatever disability this boils down to. Most of all, I want answers for her. Because the not knowing is the hardest part of this.
This week her counselor released her...saying to come back after school starts, and we'll see how things are progressing there. She is scheduled for another nerve conduction study at the end of August, and goes back to see the neurologist in early September (before school starts).
I still don't believe the neurologist.
I still DO believe the psychologist.
I still think the neurologist needs to image her head.
I'm still NOT going to give up....because...
I still love my daughter, and want answers for her....