Saturday, July 24, 2010

Rethinking My Strategies

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....

Friday, July 16, 2010

Rollin', rollin', rollin'....

We have finally gotten the ball rolling for the move. We have dates. We have boxes. We even have some PACKED boxes!! Yup, things are moving right along...just not quite fast enough. We've only been in this place for just over 2 1/2 years. Do you know how much accumulates in that short period of time?!? Lets just say we have a LOT of junk. That we are moving. Blah.

School stuff. Registered for GRE. FAFSA finished. Initial paperwork for VA finished. References obtained. Still working on building up my confidence.

Work is moving right along...

Jason is having a rockin' time in Dallas at his Supply Conference. I'm a bit jealous...he got to visit with some friends from our days in Texas (Hi, Tara!!) SO wish I could have gone with him! He gets back tomorrow. YIPPEE!!

The kids now all have new IDs...with only a short sojourn in the ID Lab at Jason's work...SO grateful for the fact that they have one at Jason's work at all. It means a difference of about 4 hours of wait time. And now we are good for another 18 months.

And now, coffee with a friend... rollin' out the door for some ME time!!

Saturday, July 10, 2010

There is so much to say...

My brain is overloaded. There is too much going on.

1. We're moving...just across town, but it involves boxes and moving trucks and chaos. Blech.

2. I'm going back to school. Remember my New Year's Resolutions? Getting started is HARD. Jus' sayin'....

3. Frances still has no answers. Which means more doctors' appointments. And Physical Therapy. And testing.

4. Jason has training. In Dallas. For a week. (I know, I know...it's not a deployment...a week is NOTHING...blah, blah, blah. He's been home now for 9.75 of his 10 years in. I'm not used to him being gone...please bear with me.)

5. About that...no, he's not going to the sandbox. Still waiting to hear where...but not over there. This time.

6. Family reunion. Not here. Right in the middle of it all. Sigh.

About #1...we're moving into a house that we hope, eventually, to buy. Financing couldn't be easy, could it? Seriously, with the housing market, economy, etc., in the shape they are in, you'd think it would be easier to get financing than to, say, find a needle in a haystack. But no. Not for us. Sigh.

#2. School. After 20-ish years out of school, I am TERRIFIED. There is SO MUCH to do. And I am not sure I am up to this. Ugh. GRE, FAFSA, VONAPP, GI bill, portfolios, resumes....when did it all get so complicated?!? This is NOT what I remember.

#3. Frances has another Nerve Conduction study coming up. And another followup with neurologist #2. Last followup was...ummm...a bit anticlimactic. Nothing found by any tests means that nothing structural has been found, which, according to above neurologist, means that there is no explanation for her numbness. He DID give her two prescriptions...one specifically for her migraines, and the second for prevention of migraines and possible treatment of the as-yet-undiagnosed nerve problems. But supposedly there is no reason to image her head. HELLO. Center of the nervous system. From which said rebellious nerves originate. Seems simple enough to me..... Oh, and the letter from the Psychologist? Neurologist #2 thought *I* had generated it. Thank you for that vote of confidence, doc....and for the honorary doctorate!

4. Jason, training...'nuff said.

5. Awaiting orders. I HATE waiting.

6. Family reunion...should be fun...if only it weren't right in the middle of things...

Thank you for hanging in there with me. Someday...well, I'd like to have enough time (and energy) to actually blog again. We'll see what the next few years hold...