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!!!

24 comments:

  1. I am glad things are moving along but I know it sucks to have that many Dr. appointments. It is draining, exhausting, and there is always another pill or follow up appointment after that. Keep your head up your doing a great job!

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  2. Emme - I have missed you! I am so sorry I haven't commented lately. I have been thinking of you though. Please don't worry about how long your posts are or what they are about. You and your family are in my thoughts and prayers daily. I know right now things are complicated and difficult. You are thinking long term and that is what counts. And you can vent to me any time!! You are doing a fantastic job and Jay will beat this. How could he not get better -- with a strong woman like you in his corner! Take care of yourself and be assured you are not in this by yourself!

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  3. Thank you, ladies, for the encouragement. It means so much to hear that I am on the right track. Some days I just want to scream, "Give me my husband and my marriage back!!" Other days I can see the bigger picture and realize that this is certainly NOT the worst thing that could ever happen to us. We do much better on those days:)

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  4. Emme I'm so glad you posted! (I don't care how long your posts are, this is a safe place for you to record your thoughts and feelings. And I'm really glad you do it.)

    I'm glad to hear things are moving along for your husband.

    For the homeschool, I'm sorry to hear that you don't have a set time you can spend time with your son. Have you ever tried going to the cafeteria or a local cafe (If there is even one around.)? I'm sure you'll find a way to make things work. School can be really fun when you get creative! I really wish I could tell you how you could teach your son. All I remember from kindergarten was that we did activities and made a book for each letter of the alphabet.

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  5. Hi Emme - trust me girl you are NOT wrong for feeling some self-pity. What you are doing is an immensely difficult task - helping Jay, raising a family, homeschooling a little one, keeping a house, - I'm exhausted LISTING what you do never mind actually DOING IT.

    I do understand that seeing the woman and her son in the wheelchair does give you a different perspective in life; but that doesn't mean you aren't shouldering your own responsibilities in an amazing fashion. If you sat with her and told her your story - she'd probably feel compassion for you and might even think that the burdens she has bourne aren't as bad as yours.

    As far as homeschooling - I'm sure whatever you are doing with your son is fine - kindergarted isn't a MANDATORY class in most states. I'm sure he will learn what he needs from you and can catch up in first grade if he needs anything else.

    I'm still praying for you & Jay and your children; you are an amazingly strong woman.

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  6. Justine--Thanks for the encouragement. Your ideas were very helpful. But, the most wonderful thing was what little you remember from Kindergarten. I don't remember much myself but I'm quite a bit older than you. If YOU don't remember too much from that year, then maybe it's not SUPPOSED to be any more than doing activities and learning letters. I'm putting WAY too much pressure on myself to create some great foundation when I should just be happy if we walk away with him knowing the basics. Thanks, that really lifted me up!

    Ann Marie--Thank you so much for such a lovely, warm comment. I hope I didn't give the impression that I pitied the woman in the wheelchair as if she lacked in some way. I was in awe of her. As for her having compassion for me; I have heard a saying that if everyone in the world put their problems in a pile, we would be so happy to grab ours back. I agree and I hope she would too!

    As for the homeschooling, you are right that Kindergarten isn't mandatory in MOST states. I happen to live in a state where it is. Thankfully, it is a lenient state and I'm required only to register with the school board (check), keep attendance records (check), and teach subjects similar to the local school (umm...) The good thing is our home state has no such requirements and Kindergarten isn't mandatory. We hope to be moved back there before the school year is over. So this is all really just formality in case social services or the school board come a knockin'.

    This is a trying time for our whole family and with Nathan having a front row seat, I hope we are at least building character, patience, and compassion even if it's at the cost of learning his own address:)

    Thanks again for such an uplifting comment. You really made my day!

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  7. Hi Emme!
    So awesome to hear from you. And a couple of things, firstly; yay for the diagnosis. (I know that sounds terrible but really, I'm so happy that you guys have a know-for-sure. Uncertainty is lousy). And while the appointments can be a pain in the ass I am thrilled that Jay's getting them. It seems to take a whole bunch of work from a whole bunch of people to fix a brain. But it CAN be done. For sure.

    And HOLY HOMESCHOOLING COW! I'm fierce proud of you for even attempting homeschooling. Good for you for being faced with a problem and thinking your way around it and being brave enough to try something new to you. And as far as feeling like you're not doing it right... I bet you're doing just fine. And just as an aside, in Finland (which has the best educational results in the world), kids don't even get to a classroom before they're 7.

    x

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  8. Erin--How great to see you again! Thank you for all the positive reinforcement. We are very lucky that the Army is trying to fix what is broken. I believe it CAN be done, as well:)

    About your homeschool comment...thanks for the up-lift! But, (and this is why I love blogging so much now) you added a quick little blurb at the end stating that kids in Finland don't even start school til age seven and THAT comment has changed my perspective so much.

    I read your comment several days ago but didn't have time to leave a proper response. But, let me assure I have not let that little fact out of my head. I fell asleep thinking about it the night I read it. It provided me so much encouragement, I can't even tell you.

    Where I live, because of his birthday, Nathan could have started Kindergarten at age four! I put my foot down for that-not that it's a bad thing, but it is a bad thing for THIS child. I think I'm going to take it slowly and just let his interests guide me. He just turned six this month and I think my goal as a teaching-mom is now to just NOT zap his natural love of learning!

    Thanks again!!!

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  9. Hi, Emme. I just wanted to add (at the risk of sounding ME ME ME!) that my formal education was really patchy until I was 7 or so too, and even though I was read to all the time I didn't learn to read by myself until quite late. BUT when I did learn I never stopped. And I caught up and surpassed my reading age pretty quickly; mostly, I think, because it was my own decision.

    Also, the most important things a 6 year old can learn are empathy, kindness and patience. And he's getting those lessons just by hanging out with you!
    x

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  10. I don't comment much but I read and sometimes your entries make me weepy. But this one was so full of I don't know? Hope maybe? Things are finally happening for you guys (Jay) With the diagnosis and meds and clinics and WTU, things seem to be looking up. I know that the journey will be ridiculously long and unfairly arduous but this seems like a good leg yes? I hope so.

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  11. p.s. Kids learn more through play right now (at his age) than any other way. And Erin was bang on, you are teaching him the most important lessons of love, empathy and patience. Keep on keepin' on mama.

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  12. As the friend I offered to be, I find I may have failed miserably. I have yet to check on your heart. :)

    How are things going?

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  13. Emme!

    Where are you? I miss you! I hope everything is OK. Let us know how you are!

    Patricia

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  14. This comment has been removed by the author.

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  15. Hi Emme...haven't heard from you in a while...hope all is well. Much love-
    Jenn

    PS sorry about the deleted post above...my little grandson likes to push the buttons! :0)

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  16. Hi Emme, I just wanted to stop by to say hello! I hope you had a wonderful Holiday and Happy New Year to you and your family. I hope all it well.

    And if you have time, maybe stop by and enter my little giveaway. You deserve something for yourself. (ending: 01/03/10)
    Just Better Together is having a giveaway.

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  17. Hi Emme,

    Just wanted to let you know I still think about you guys, and keep your blog in my Google Reader in case you post again. Hope everything is on an upswing for you and your family is doing wonderfully.

    Kristen

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  18. Your family is often in my thoughts and prayers. I hope your blogging silence means your family is too busy with the good things in life to blog. Mx

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  20. Hi, I'm new to blogging and went in search this morning of something about being a wife to a Vet with PTSD. I can't believe how many women there are out there that are having the same exact issues I am! I am excited to read more, Lord knows I've felt really alone the past few years. My husband was a Marine, and got out after 5 years and 3 Iraq deployments in 08. We moved to his home state assuming he'd get a great job. After the first year or so of him getting fired for sleeping on the job or getting in trouble with coworkers, and watching him slip away from being "present" in our daily lives, I called the VA. They at this point have done the giant psych eval, and diagnosed him PTSD, but we are waiting on the rater? an MRI on his knees, and another sleep study. He's on a myriad of medications and not anywhere near the man I married. We have 4 small kids and I homeschool as well. Thank you for putting perspective on this issue, and making me realize I'm not alone! I look forward to your next post :)

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