JULY 2011

    The month of July was sooo hot, above 85, 90, and even 95 sometimes most of the days of the month. The hour drive back and forth to therapy was often excruciating. Danny was full-swing into his obsession with fixing the stereo sound system in the car, and each and EVERY trip in the car I dealt with him making me wait an hour or more for him to tinker with it. His sleep cycle was reversed for half the month, and he began refusing to get up and get ready for his appointment sometimes. One weekend that we stayed at Barb's, he again slept all day but was awake at night, and we spent the evenings out on her patio talking.
    OCD was still ruling Danny's awake times, but I could handle the  occasional things he did that were extreme. He spent about 2 weeks spending copious amounts of time on the computer, and when I would go to use it, it would take me hours sometimes to straighten out the mess he got it into. And often he ripped apart my surround sound system and drug speakers from everywhere to create his own version of realistic sounding music or video games. I would let him go, and just fix everything back the next day. 
    Along with computer obsession came more fixating on his ex in Germany...writing to her, asking her to visit, grilling her about his old belongings, asking if he could come stay there, telling her how he missed her. It took everything in my power to take all this in stride. I just kept telling myself he was trying to connect with the past, since it was fragmented somewhat and all he could really remember. She wrote to me personally several times. She wanted to know how to handle Danny and his emails. I told her to handle it any way she wanted. I lost my patience when he decided to call her one day though, in Germany, and stay on the phone for almost 3 hours. I was not pleased with the 320 dollar phone bill I received. Luckily the phone company did my a "one-time service" and took it away given the circumstances. I also had international calling removed. He still kept trying to call her, and I would have to remind him every time that I took away the long-distance.
    I grew quite close to some of the girls in my brain injury support forum and Danny and I both had the pleasure of conversing by phone with some of them. It was awesome how we all understood and cared about each other. 
    My car was beginning to have a lot of problems and I feared it nearing its end. The radiator broke, then a rear wheel brake shattered and locked up, along with numerous minor things. More living on the edge....
    I was having insomnia and nightmares much more frequently.
    I was trying to get Danny's nights and days back to normal, and also wanted to curb the growing aggression he seemed to be starting with. It began to appear as if his prior bipolar issues were returning more strongly, and this was frightening. He still refused to shower but for every week or even less.
    At the end of the month ANOTHER different psychiatrist "adjusted" meds again. Alittle Vyvanse was good right? So maybe more will be better. WRONG! Depakote and Seroquel were increased, but the Vyvanse increase was a disaster. Danny now was a nervous wreck, full of anxiety, restless etc....and just not a nice person sometimes...


Summing up July in my journal...

A day or two of stress...
Monday, August 1, 2011 | A Frustrating story

Like the nut that I am, either Danny is keeping me up all night, or he is asleep (since 4:30am) and i of course can't sleep a wink. I've been having awful insomnia for a couple weeks now, and when I do fall asleep, I have dreams that wake me...not nightmares(my USUAL dilemma)...just weird flashes of ppl that last a few moments but wake me. I even see the ppl I am friends with on HERE, sitting in hosp rooms w/their family, or in their homes....I'd say this TBI stuff must really be dominating my subconscience as well as my waking time....

So anywho..... The trip to the psychiatrist Friday was very disturbing, as was the visit to the pharmacy afterwards. A new psychiatrist had come to the office several weeks ago, and I was VERY pleased with him. He was the 1st such that I'd ever met that didnt appear to need one HIMSELF lol. He was wonderful, on top of things, analyzed carefully what he was doing and/or trying with meds, LISTENED to us talk abt what was going on, and was on the same page with Danny's neuropsychologist, calling him frequently to discuss changes and to discuss DANNY! He made med changes and additions that really helped Danny. Well, we walk into the office to find out that Dr"***" is "no longer with us because he couldnt seem to get to work on time very often..."  I dont GIVE A CRAP!! I want him! I love him!!!! I was so totally disgusted. So we are in the office with the "old" psychiatrist who is now back again. Danny didnt get a chance to even talk abt anything...nor I. He just talked over us basically. He said "We have to get you off valium cuz you are on an ADHD med and the state will look at that as prescribing an ""upper"" with a ""downer"" "  He WAS on Vyvanse before the accident...a much higher dose too, but it was restarted in June to help cuz of the TBI, to stimulate Danny's alertness....which it DID, like a miracle...if you remember back, Danny's fog lifted dramatically the day he started the medication. And the valium...well Danny has anxiety problems and was leaning toward aggressiveness to a dangerous point. I agree, 5mg 3x/day is alot of valium, so he reduced it to 2mg 3x/day...but he is going to take it away all together next month! Then there's the issue with the Celexa. When I went to pick it up last week the pharmacy says all the sudden that they need a pre-auth from the dr. cuz of the high dose (60mg)...ok Simple thing. Dr calls them with a verification and number saying Danny needs this dose. Well Dr "Old dr" AND the secretary, say "Noooo, if the state kicks the script back, then the PHARMACY has to start paperwork to get it approved" They wouldnt listen to reason! I've been down this road before during this past 8mo. I know what I'm freaking talking abt...just give me the pre-auth NUMBER!!!"  Nope!  THEN they start going on abt not being surprised if several of his meds dont get covered anymore since the state has made major changes. They hand me this info sheet, and it says all abt only one med in each class of meds being allowed etc, and they "dont foresee" this being a problem resulting in mental health crisis...but the results of it will be seen later....WHAT!!!???? After ppl with schizophrenia go out and do a Casey Anthoney??? Or someone like Danny, or any of our guys and gals w/brain injury has setbacks cuz the meds arent there? THEN they will decide it was a dangerous move???I cant pay for them outta pocket. There isnt enuff funds to stretch any thinner here!! So needless to say I was fuming when we left. Poor sweet Danny...didnt understand any of what was going on. He's asking me to explain but it was just too complex, and he's like "Awww dont worry, I have LOTS of money on my army cash card to pay for all of it"....GGGrrrrrr....there hasnt been an army "cash card" since 2006....lol

 So...off to the pharmacy to drop off the scripts. I am feeling confused more...there have been numerous med changes throughout the months, and knowing what is what is growing harder...but i'm holding it together. I think I've got an excellent handle on all this complicated crap! The day before, I picked up some of the scripts and noticed when I got home and looked at the pills, that they filled the old kind of Depakote Danny was switched from in June, rather than the extended release he is on now. So I start out by getting the bottle outta my purse and telling them they are the wrong pills. Now I know my usual girl didnt fill them cuz she is very on top of things, but they are like "What? How could that be bla bla bla" She finds that there was a refill left on the old depakote script so they filled it. It was my fault cuz I didnt give them the rx# when I called for the refills. They tell me the scripts dont come up on the computer in any kind of order and they dont have a way to mark old scripts on the computer as discontinued, so you have to give the rx# so they know. OOOOHHH OK. So what if Danny were doing this on his own and not noticed? What if he took 3 500mg depakote ALL AT ONCE at bedtime, cuz thats when he takes the NEW extended release ones? What abt old ppl who arent as aware...or have poor eyesight, or are half in dementia? I worked in a nursing home for 12yrs, and it was PRIORITY to mark meds D/C'd...DISCONTINUED, as soon as a dose was changed, or stopped all together, or what the heck ever!!! You mean to tell me a PHARMACY cant do this?? Come ON!!! Ok, I believe they were telling the truth, but GEEZ!!! Maybe some computer updating is in order???

Then I hand her all the new scripts. Well, the lower dose Valium wont get filled cuz we just had one for valium filled the day before. I can understand where the "state" may have a problem with this....afterALL...with too many valium in the house maybe we will SELL them...or worse (GASP) I might TAKE them. So a dr writes for 2mg 3x/day, but I cant follow his orders and will have to split his 5mg ones and give him 2.5mg 3x/day instead. Whatever!

I explain that the Dr and his office INSIST they dont need to give a pre-auth# for the Celexa. The lady at the pharmacy is angry. I can see her point. She's bitchin behind the counter..."I cant believe in this day and age a dr doesnt understand what a pre-auth is!!" Yea, well those were my thoughts too, I tell her. Out I go.

Back in an hour to pick up the medications. The Celexa script was kicked back, as we knew it would be. I ask if she cant CALL the dr or something...she says she did, no answer...and says she faxed the dr telling him what she needs. Good luck with that...I think he's only in once a week or some bullshit!! Monday(today) i'll find out if the script can be filled. Danny has one week of his script left...  THEN she tells me the Namenda cant be filled cuz the state wont approve it for some reason...prolly wondering why a 30yr old guy is taking an Alzhiemer med. WHO CARES WHY!! You "state" ppl arent drs or even MEDICAL ppl at ALL!!! Its a MEMORY med...hellOOOOO...doc wants him on it to help with his memory loss!! She said I'll also find out today after she makes phone calls whether it will get pushed thru. Well, here at home I already split all the Namenda and am weaning him off. I'll be DAMNED if the "state" is gonna "cold turkey" Danny!!! So....the whole dr/pharmacy thing was real upsetting!!

Danny has been doing pretty good....still telling, without realizing, wild stories at times, but not near as badly. We've stopped looking for the lost cars...altho he does still say someone has them somewhere. He asks a dozen times a day if he just came here from his aunt and uncle's house, and other places...like the "camp thing"...memories from the army...and he's still looking for that old "cash card". He is way overboard with his OCD some days, ripping stuff apart, rewiring things, working on the car stereo for copious amts of time. And...he is on a poor sleep/wake cycle STILL. And i'm on one too now right along with him. He also has these "amorous" periods where there just isnt enough time in the world to have all the sex he wants to have...we are on day 3 of this...lol. Dont get me wrong...I love sex...but holy crap!!! This started Thursday night, and I can count the hours I've slept in a row on one hand. Guess its a good thing I've been having insomnia anyway...He IS so affectionate and attentive tho, which is nice. He always was that way, but now he's even more that way...so I guess I just enjoy it before he goes into a 2 week lull and sleeps night n day again haha.

Saturday I woke with a horrible migraine and was in bed all day!! Its the worst one I had in several years...couldnt even lift my head off the pillow. I wanted Danny to go downstairs and get me Excedrin...not that that would help anyway at the point I was at...but could you go bring me some? His answer?  "You know what takes away a headache every time dont you?" MMMhhmmmm....but you know what? It took my mind off it awhile anyway....lol

Typical Days of Aggravation in July

One of my days...Grrrrrr
Saturday, July 23, 2011 | A Frustrating story

Today was one of the most frustrating days yet!! Last night Danny was anxious to go to therapy today. We got to bed early, altho sleeping was difficult cuz we only have fans in our bedroom and it didnt touch this heat. 

We got up, we ate, he took his meds, but then he started his hemming n hawing abt going to therapy. "I dont need it. There's nothin wrong with me" etc. Nothing I can say or do changes him when he gets like that. I'm getting tired of missing appts and I feel like the rehab must think its a reflection on me. To be honest, I dont have it in me to keep trying to talk him into it. I DID tell him tho that he hadda call them HIMSELF and tell them. 

We had already missed speech therapy. Its an hour n 5min away. Well, he called, and she talked him into at least coming to see the neuropsychologist. Well thats wonderful, except he was still in his PJs and unbathed, and we would have to leave in 20 min to get there in time. I have a TERRIBLE time getting him motivated to get a bath and he hadnt gotten one night before. And because of the TBI I guess, it doesnt seem to bother him at all not bathing. This is sooo NOT Danny. He was always SCRUPULOUS with bathing and grooming, in fact overboard with it cuz of his OCD. Well he goes up to get ready and I'm telling him over and over..."You have 20 min and we HAVE to leave!" I go up in a few minutes and he's sitting there smoking a ciggy. He says "I am, I am" when I say "GET READY!!!" He's going on abt how he can't believe he's been being such a "scumbag" etc 

Well he's taking his good old time, washing at the sink as slow as can be, picking just the right clothes etc. Then he's washing his hair over the tub etc etc. I'm VERY irritated by now. Dont feel like driving an hour in 100 degree heat to catch the last 25 min of his appt. I'm getting very annoyed, yelling even. Nothing moves him faster. Once he was ready he STILL wasnt coming outta the house even tho I'm out front blowing the horn. Finally we left.

The appt went ok. Dr suggested he try to get involved in some activity thats volunteer or something. OK...

When we get out to the sweltering car I remind him I have to be back in town by 5pm to pay my car ins. or it will cancel at midnight. What does he do? WORKS ON THE CAR STEREO for OVER an HOUR!! I am HOT! Sweat is pouring off me, my mascara is burning in my eyes, I am yelling "Come on!" To no avail. With his OCD, its always "Ok im almost done" "just another moment" etc. He's got his head in the trunk with the subwoofers, splicing wires, connecting them, doing god only knows what. As the time came and went to make it to town in time I am beside myself, crying and eventually soooo angry I punched the shit outta my steering wheel (my knuckles are bruised) Driving home I'm angry as hell, and he HAS NO IDEA WHY!!!

When we get into town, he wants to stop at an old friend's house that he's been saying has his old weightbench (from back pre-army days...like 2000). He goes in, and again, I'm in the car, sweating my ass off, dying, gettin mad. I had to go n after him in a half hour and made a fool of myself bitching. Now the ppl prolly think I'm just a bitch all the time.

We finally get home, and pass a kid on a motorbike, and he's yelling for me to stop so he can ask the kid if he wants to sell the bike (with WHAT MONEY is he buying anything???) I refuse and keep driving. I am a bundle of nerves, hot, exhausted and ready to hit up the state store!!

On top of that, I figured at least if I put the ins. money in the bank machine I can pay it online before midnight. Well, isnt the damn machine being serviced!!! Gota try later.

NOW he decided to walk up the block to one of Nick's friend's dad's house to ask if he has any projects he can do. He's NEVER walked anywhere from the house yet. Guess I gotta walk up and check on hm soon. Who knows if he can find his way home.
Its too hot for this aggravation.!!!

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   Oh Blue sorry for the hard crappy frustating day!!!!! You need a nice dip in a pool somewhere.....
   aef55
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   you know, there were bright spots that I neglected to be ABLE to see in my anger yesterday (the heat and the fact that I HAD to be back in town by 5 were what were frustrating me the most...I've become used to and actually "ok" with how Danny gets involved in projects) It IS good that he at least gets interested in projects. Some of our partners arent able to do that. I wish I had lots of harmless things he could work on that he's interested in and wouldnt cause damage if he goes overboard with them. Another nice thing was that an older woman walking in the parking lot came over to Danny and was complimenting him on the work he was doing, and saying how great it was that he can work on stereos etc and that she "can barely even plug an appliance in" and that was the extent of her do-it-yourself ability. I could see the pride in Danny's face and it made me momentarily happy for him. It was just one of those bad days. The heat broke an 85yr record Friday where we were, and sitting around hot and frustrated cuz I was nervous abt getting home just got the best of me. At this point I also have to look at my OWN fault in the situation. I waited til the day the insurance was going to cancel(not my fault exactly...I was waiting on an unemployment check) but I had the money in my purse Thursday, and should have taken care of it sooner. Now, when I put the money in the bank machine, the whole amt was not available and so I had to pay 2/3 of it online. Hopefully Monday when its all available the car ins. company will reinstate after I call them and explain....so I need to practice not only patience, but work on my SEVERE procrastination problem (a problem of mine ALL MY LIFE)
   
   Wanting to walk to a friend's house also IS an accomplishment for him in the motivation area. It is bothering me NOW, because I am set to return to work this week, and have it in my "worry-bank" that instead of taking for granted that he always stays inside unless i'm with him, I'm worried he will go someplace and get lost while i'm at work. Thank heavens most of the shifts will be 11-7 nightshift. Snap and I were IMing last night and discussing that an ID bracelet with his name, "brain injury/confusion", our address and phone would be good to get for him. I know he wont wanna wear it all the time, but maybe he'll agree to just when I'm not here.
   
   
   
   
   
   
   
   
   
   WIRES  
   
   

   Tuesday, July 26, 2011

   Today I had a 4hr orientation to care for a 2mo old sick baby. I work tomorrow all day...but then thats it cuz the family doesnt want nightshift nursing, which was what I was gonna do. So anyway, hadda walk almost 2 blocks in a heavy downpour to get to my car when I was done....I love rain, but had paperwork n stuff w/me so it wasnt a good time.

   Came in the door and Danny's of course involved in projects....lol. He's been trying for a couple weeks to get some old dead cell phone to charge and work...to no avail. Old chargers all over, spliced wires etc. My daughter was havin a fit cuz he had her phone and was tryin to use her SIM card. Oh brother. Then she went to make cookies but someone used all the butter...so Danny to the rescue, trying to scientifically calculate how much cooking oil would equal the butter called for. He's got a calculater, measuring cups all over. After an hour he gave up on that. I made soup and laid down on the sofa for a nap.

   Abt 2 hrs later all this LOUD RUMBLING gunfire woke me. Here Danny ripped all my speakers and subwoofer outta the kitchen, plus found 2 smaller subs, and wired them all up to the surround sound system, so Nick's game sounds like we are in a real war! He even has a speaker UNDER the sofa so the sofa is off balance but vibrates like "sense-surround" (Remember that from the 70's when the movie Earthquake came out?). A big tangled mess of wires was all over the floor! I almost started laughing. Nick's making a face and pointing at it all smiling. I said in his ear "Awww he did that for YOU" and he said "I know mom"

   Later, Nick n I were headed to the RED BOX to get a movie. Danny asks to go and runs out to get in with us...no shirt or shoes. When he gets in he realizes the subs in the car STILL arent working (What he was working on that day in the heat) And now they want something from Burger King too. In the car he's pulling out the stereo while i'm driving foolin with the wires, trying to use a lighter and my cell to see. At the RED BOX he says "pop the trunk" "Pop the hood" and he starts going over all the connections Nicks in the back n says (SIGH)"we are gonna be here all night" I just laugh...i did good!!! In a half hour or so he gave it up...after taking fuses out for my headlights etc to try to use them for the amplifier...

   We got to watch the movie....after he figured out what connections to reverse to get the DVD player to work. He fell asleep thankfully, cuz all he did was chatter thru the first part of the movie. Now Nick is playing his PS3 game again(more figuring out connections to reverse for ME). I wonder what he'll get into while i'm gone 8hrs tomorrow....but i'm proud of myself for being patient :-)

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