Saturday, September 18, 2010

Trying to Catch Up!

This is a long one, but please stay with me!

I can't believe it's been over a month since I last blogged. A few days after I last posted, Jay was accepted into the WTU, the Warrior Transition Unit. It's a unit for soldiers who are healing. In the WTU the soldier is given a case manager who lines up appointments and therapy. The soldier's job is to heal. This is great news because it means that he isn't just trekking along thru the no man's land that he's been in--he'd sort of slipped off his old unit's radar when he went on medical leave. Now higher-ups are asking about him and he has appointments and formations to attend. He's no longer on his own.

He had to out-process from his old unit just as if we were changing duty stations. It was a long grueling process because scattered amongst all the signatures and meetings for out-processing were MANY doctors' appointments. Twelve just in that first fourteen day period. And there have been 27 scheduled for the month of September. I am not complaining! I am happy that he is getting the tests and therapy he needs.

But all these appointments have meant that this is the very busiest I believe I have ever been in my life. Jay still can't drive. He has done it a few times but not recently. This means that his morning formation (7:17 am) , his appointments, his 3pm PT (required daily physical training), his meetings, etc are all Nathan's and mine too. (We live just far enough off post to make it not worth our while to go home every time we drop him off somewhere.)

Nathan (who prefers the name Rush) was to start Kindergarten this year. We decided I will homeshool him instead. I have no one here to help me get him on and off the bus or pick him up if something goes wrong at school. Schooling him myself became our only option. Homeschooling deserves a blog of it's own because it's turning out to be so much more difficult than I thought it would be. I thought it would be easy since we could just homeschool anywhere. We've done flashcards and worksheets while waiting in the car, in the hospital's waiting rooms, on the steps of Behavioral Health, and we've tried it in the park. But it's just too distracting. The only times I have been successful have been the days that Jay has outpatient (where I drop him off at the hospital in the morning, he catches the van into the city for PTSD therapy with the other guys, and I pick him back up in the afternoon). On those days we have a block of several hours AT HOME and we are able to get tons of stuff done. Otherwise, it's been a complete flop.

I have a tendency to write long meandering posts that just go on and on. Since it's been over a month since I updated it might be simpler to just list what's been going on so that I can just start fresh next time.

So:

Jay finally received an official TBI (traumatic brain injury) diagnosis. I know...DUH!!! But now it's recorded and he's in the TBI clinic's rotation of doctors and therapists.

Thru an MRI we learned last week that he has degenerative disc disease. He was a medic and lugging all that gear around has really done a number on his back. He's been in constant pain since he got back from Iraq in '08. Now we know why!

He is now in physical therapy in a nearby town two days a week for his back.

He was sent to the city for a several-hours-long psych test. Thru that we discovered where in his brain his damage is likely to be. I couldn't tell you myself, but at least it's on paper!

Thru that psych test he is now being set up with a speech therapist for his intense stuttering. He had never stuttered before he came home from Afghanistan. It just appeared that first week back. Then it tapered off. By about mid-August it came back full force and is really affecting his communication.

His anger outbursts have subsided!!! As have his seizures. Of course this is all do to the proper combination of medication. The psychiatrist says he has to stay on them for three years before he can try to go on his own. That will be a scary day when he decides to go solo. But for now, things seem to be under control.

Jay went for a sleep study a couple weeks ago. He spent the night at a little clinic off-post hooked up to some equipment to monitor his breathing and whatever else. We got the results of that yesterday. Basically, there is nothing THAT doctor can do for his poor sleeping. His recommendation was less caffeine and to cut out the cigarettes. Thanks. I'm not slamming the doctor. But, if it was just that easy to quit smoking there would be no smokers in the world. And since he's not sleeping well, the caffeine helps to keep him moving.

The sleep study doctor did say something that Jay is very concerned about. He told him that the drug he takes for nightmares (Minipress) keeps him from reaching a level of sleep where dreams occur making it impossible for him to dream. Well, at night while he's sleeping Jay wakes to see people that aren't there. At least not in the physical realm. So, if they aren't dreams, what are they?

Jan, Jay's therapist, is all over this kind of stuff. She has a very open mind so I'm sure she and Jay will explore this further. Jay sees people that aren't technically 'there' throughout the day too and Jan takes him seriously. Thank God for Jan.

Jay is med-boarding. We were told we could expect to be out of the Army by March or April. Heaven help us after that!

I'm including a list of his medications. As much as a record for myself as for anyone else who might be interested:

Tegretol--seizures
Topomax--seizures/anger/headaches/PTSD
Buspar--PTSD/anxiety
Klonopin--seizure/anxiety
Adderall--improve concentration/memory
Minipress--nightmares
Nexium--acid reflux
Gabapentium--sleep
Rizatriptan--migraines
Vicodin--pain
Levitra--erectile dysfunction from all this medication!!! This bottle of pills will last forever because while he's losing his drive, I'm too tired to rev him up;)

I am hoping that this post did not sound like a lot of complaining. A couple days ago, Nathan and I were sitting on the ledge outside the physical therapist's office. It was the last appointment of a long and hot day. Homeschooling, again, was a complete failure so I just let Nathan dig for roly-polies (pill bugs) in the dirt. I won't lie, I was feeling a little sorry for myself.

We were off-post and on a fairly busy street. Off in the distance I saw a person trying to cross traffic in a wheel chair. I held my breath as I watched this elderly person being pushed across the street. Then as this person was coming toward me AGAINST traffic-as there was no safe place to be for nearly thirty feet or so- I realized that it was a motorized chair and she wasn't being pushed at all but had something on the back of her chair. As she came closer and crossed another street into the parking lot where we were sitting I saw that she wasn't an elderly woman at all. She was maybe my age (mid-thirties), her legs deformed with what looked like extremely painful swelling, and it wasn't "something" on her back it was "someone", a boy about Nathan's age. He was clinging to his mom for dear life as she navigated thru traffic. She wheeled thru our parking lot without looking up at us and then she rode off, clogging up traffic as she disappeared over the hill.

My heart dropped and I felt a wave of shame slam me in the face. Sure, my car's air conditioning is broken. Sure, it's hard to keep a six year old occupied AND happy during hours of appointments. Sure this just plain sucks. But, that woman...that woman put me in my place and I hope I never forget her face. She was just chugging along doing what she needed to do with her kid strapped to her back; the rest of the world be danged! She is me, but I am not quite her. Not yet. But I'm working on it.

Thank you to everyone who left such lovely comments on my last post. I have responded to you individually over there and I hope you forgive me for it taking so long to acknowledge your well wishes. Aside from being busy, I've been avoiding this blog because I just didn't have the emotional energy to dredge all my thoughts out onto the screen. I didn't even realize that people had left such sweet encouragement. I feel like such a jerk. I assure you, the pity party is over. I'm ready to chug down the street!!!