Tuesday, December 4, 2012

Autism

Today was one of my 'out' days, where I get dressed and actually leave the house.  While in the car, I heard a commercial on the radio, regarding autism.  It stated that a child born today has a 1 in 88 chance of being born autistic.
Wow.
My son, D, has Asperger's Syndrome, which is on the Autism Spectrum.  He was born in 1987.  Even as recently as that, Autism wasn't common, wasn't tested for, wasn't looked for.  He had some develepmental delays, but we just attributed them to the fact that he was home with us instead of in a day care situation.  When he started Kindergarten, the teachers noted that he had some issues, and requested permission to have him tested. This started a whole merry go round of testing, seeing behavioral specialists, medication specialists, therapists, being put on and taken off medications, having bloodwork done to monitor these medications....you name it, we did it.  When he was getting ready to start middle school, his then psychologist moved, and we were looking for a new one.  We lucked into finding Dr. Jobe, a child and adolescent psychologist whose office was near to us.  D took to him, and Dr. Jobe spent several visits just getting to know D and evaluating him.  He was the one to finally diagnosis D as having Asperger's Syndrome.  It was a relief to have a definitive diagnosis, but it was also heartbreaking.  They told us he'd never drive, never hold a job, never be able to live on his own.....and because Jeff and I never gave up and never accepted these limitations, D has succeeded in all of these milestones. 
It's not been an easy road.  It's been difficult.  Having a son with extreme temper flares, who is almost a foot taller than you and who outweighs you, can be.....interesting.  It's made even more so by my physical frailties.  If I'm struck the wrong way, I just don't bruise....I dislocate, break bones, break blood vessels.....it can be really deadly for me. 
I just can't believe that in just 25 years Austism has grown from hardly known, to 1 child in 88.  Something, people, is seriously wrong for this to be growing like this.  Doesn't anyone else see that?

Tuesday, April 24, 2012

The Road To Hell.......

Yeah, you all know how this goes.  6 weeks from my last post.  Trying to post everyday.....yeah.

Anyway.  Got some medical answers - My lyme is indeed active, along with Bartonella.  The Bart is what is causing the dizzy spells and the racing heart rate.  I'm on Doxy until I see my LLMD in early May. 
ENT visit went well, nothing was found.  He agrees that my allergies are extremely bad, and I should check into allergy injections.
E is wrapping up her second semester at Penn State, and doing well.  We had a wee little incident which landed her at the ER getting 3 stitches (she cut her finger at work.)  D finished and passed his GED exams, and is working on getting admitted to HACC. 
Jeff managed to injure his wrist while woodcutting on Saturday, and is in a splint for a week......woof.

I'm drowsy, so more to follow later................

Tuesday, December 6, 2011

So.  Thought I'd mention the meds I am currently on.

Morning:  60mg of Cymbalta, 10mg of Zyrtec, 150mg of Zantac, and 1000IU of Vitamin D.
Evening:  50mg of Lyrica, and 350mg of Soma
As Needed:  350mg of Soma (can have two a day in addition to my evening dose) and 500/5 Vicodin (can take up to 6 a day as needed)

I should mention here, that I don't like having to take pain medications.  I guess I've always thought that if I take pain meds, it means I'm giving in to the pain, which in turn validates that I have a chronic condition.  Problem is, I'm always in pain.  Wake up in pain, fall asleep in pain.  Even when I take the pain meds, it just dulls the edges, it never truly takes it away. 

However, I just read a really great article that explains if we are living out our daily lives in pain, it interrupts our sleep cycles.  This would explain why I cat nap off and on, and don't sleep as well as I should.  I did have a sleep study done.  Apparently, when I start to drift into REM, which is the restorative sleep, if I move even the slightest bit, the pain brings me up into the lightest stage of sleep, and I have to start the sleep cycle over again.  Multiply by many, many times during the night.  I have a sleep regimen, where I am to get up in the morning, and only take one nap for no more than 2 hours in the afternoon.  I am to try and be in bed by 11pm, and not get out of bed before the alarm goes off (at 6:20am.)  Yeah, how's that working out?

Anyway, heres the article:
Yes, Dr Pocinki also lectured about sleep at conference and it was about being too tired to sleep. Too much adrenaline all day--> too tired to sleep. He said sleeping pills were not a good choice for EDSers. He advocated proper pain management during day to avoid adrenaline surges in first place. No more “I can handle it” or “I am used to it” or if you font have proper pain mgt tools you need to fight to get them. Good sleep for almost all of us starts with good pain management. Without addressing that it is never getting anywhere. He said to think of entire autonomic system as an organ, just like the heart or kidney or liver, and if one part of it is out of balance the whole thing is out of balance because the autonomic system needs to be balanced to work properly. So, if pain is out of control and filling the “adrenaline bank” all day then the system is totally out of whack and you are exhausted around mid-afternoon from adrenal fatigue and then most of us get a second wind around 9:30/10pm when all that adrenaline kicks back in… Thus, you can actually be too tired to sleep. Then the viscous cycle starts spinning out of control. Once you start chasing pain you are really screwed.