Monday, November 21, 2011

Life : An Obstacle Course

I guess the title says it all. Life has been an obstacle course the past few months. Of course to me it feels more like I am on that show "Wipeout" and everyone is just waiting for me to fall on my face.

So the past three months have entailed numerous appointments for not only Tony(also referred to in previous posts as TP) but my daughter Emma. It has been a constant battle to get meds right for both of them.

School started the week after Labor Day here. So our house has been in a constant state of upheaval since then. Homework, school events, cheerleading, tae kwon do, fundraisers, two kids starting instruments, the transition between kindergarten and 1st grade, pre algebra, ugh WAY too much! On top of all that "normal" stuff, Tony's mystery pains have continued on almost a weekly or bi weekly basis now. I can't say how many trips we made to the hospital the last few months. Put it this way....they know us by name(first name). They know what meds work for Tony and have said meds ready for him before they even strap on the EKG. They have offered an open room for my daughter to lay down in(as most of these ER runs happen at about 3 or 4am). My kids have free reign over the TV in the waiting room....they see us coming in and the receptionist puts on Disney.

We have also had some great things happen too! Tony got his approval from Philly for his recumbent trike!!! I am so super excited for him! His face just lit up like a kid on Christmas when he got the call! It was beautiful! Tony has started a cycling team with the non profit we volunteer with(Family of a Vet). This is HUGE for him!

Tony also went thru his C&P ratings and exams for his T&P rating. So we are waiting to hear back from that. If it gets approved it could be big change for us. If it gets approved...if he gets his 100% total and permanent rating we have a chance at being able to get a house! Yes we have a place now. Will this place work for us 2, 5, 10 yrs down the road...definitely not. As of this moment we have 3 girls ages 10, 9, and 6 in one bedroom. Tony and I share the other bedroom. We have 1....just 1 small bathroom(you can not even to begin how fun mornings are here). The only other rooms are the living room and the small kitchen(so small Tony and I eat in the living room because honestly it is way too cramped to eat with the kids in there). Mind you this is an apartment. A second floor apartment. Thankfully the VA put in a stair lift for Tony about a month ago. Before that point when he was having a bad day I was either shouldering his weight or dragging him up backwards(not fun).

I want Tony to be able to embrace life....even one inside his own home. He loves to cook.....I don't. Right now I do all of the cooking because standing at the stove is not even an option for him. I want to apply for Homes for our Troops heck even thought about Extreme Makeover Home Edition. I have mixed emotions about it though. Could we at some point afford to purchase a house....yes but a very very very long way down the road. Tony's loss of employment due to his injuries pretty much destroyed his credit. Mine was never good to begin with. In a way I feel selfish....but I know Tony deserves a house that is custom for him. He deserves a home that he can use his powerchair in on his bad days....instead of having to "wall surf". He deserves to be able to find a quiet place when his PTSD flairs or when he has a migraine from the TBI. He deserves a kitchen he can cook in again. He deserves a shower that he does not have to fight to get in and out of. He deserves a home made for him. And if his condition progresses we could be facing some sort of paralysis. I can not even fathom that happening while we are in this apartment!

See I'm rambling...I'm good at that. Lets see....OH!....Veterans' Day!..... I was so proud! Am so proud! Tony was a speaker at one of our local high schools Veterans Day Appreciation Program! He did fantastic! There were two other soldiers there(neither of which had seen combat or war time). When Tony spoke....there was not a dry eye in the house. He grabbed your attention....demanded it! And his story sank into your soul. It told of his experiences,losses, devotion, and dedication to his country.

Ok I think I am done for the night.....guess I can try to sleep, right?! I am going to make an effort to keep up with this blog a bit more!

Sunday, August 28, 2011

My Dirty Little Secret......Procrastination

I am a procrastinator. Admitting you have a problem is the first step to recovery.....or so I have heard. We are leaving for vacation tomorrow. I have not packed our bags yet and I'm not sure why. Maybe because I am preset to a last minute disaster. Could be. Or am I just making excuses. If I psycho analyze myself I can contribute it to a mass list of things to do before we go and the confusion of where to I just wait until that moment of clarity hits me before I take action. So here I sit knowing that I need to pack our bags, gather and prepare meds for the next three days, sweep and mop my floors, finish my dishes and laundry, clean the cat box, feed the bird, run the vacuum, put laundry away, feed and water the cats, take the dog to our parents. I know there a few things I am missing in there.....oh yeah....I need to take a shower.

Last night I sat down and filed almost all of our scattered papers. We got our file cabinet 3 months ago.
I am finding it obscenely hard to organize our family in this little apartment. Given, the price is right, the location is perfect, the schools are great, but we have no room. We have 2 bedrooms, 1 bathroom, a kitchen, and a living room. We also have 2 adults, 3 daughters(ages 6,9,and 10), a german sheperd, 2 cats, and a parrot in a 6ft tall 3 ft wide cage.  I would like to think that I might find myself being more productive and organized in a home that would fit us better.

Wednesday, August 24, 2011

Ignorance and other Nastiness

Oh what a day! We only had one appt today....thank goodness!!! TP is still in a good bit of pain. Went and had the oil changed in the truck(we had an awesome coupon for The Works for 9.95!). Did a little shopping....I got TP a new wallet and a nice leather bound book for journaling. I got myself a duster with a washable head, a new long handled scrub brush for the pans and pots, some pledge wipes, floor cleaner, and multipurpose household that sounds sad! So I go over to my exs mothers house to drop off money for my daughters dresses(for their Aunts wedding...not sure why I am the one paying for them), but whatever I have the money so no big deal. She asks me what I am getting for my stipend as a VA caregiver. Now a month ago she was asking me some question about the program for a family member of hers. So I oblige and tell her the amount....She gets this nasty look on her face and tells me that I should feel ashamed for the amount I now get in child support from her son AND getting my said amount from the VA for "sitting on my ass". If only this woman knew what I do in my household on a daily basis. As for her son....he is more worried about taking ski trips and expensive weekend getaways with his new wife than seeing his daughters. So yeah I had his child support modified to what it should be at his income level now not what it was 9 years ago when he was an E1 in the army. I am just so astounded that she would say something like that to me....her son was in the service! If anything had happened to him SHE would be the one taking care of would SHE be ashamed of being paid? My goodness! Some people!

Monday, August 22, 2011

Long Nights

We definitely had ourselves a long night! Kids and I made our return trip to the ER around 8am. TP had Xrays and a CT scan. We waited and waited for the results....for some kind of answer to the pain. The answer was not one that my heart took well. As the words were leaving the doctors mouth TP and I just looked at each other....kind of astounded and me holding back my tears, not what he needed to see. I don't know how he deals with this pain every day. And if further testing solidifies the docs guess then we have a long road ahead of us.

So for now we are back home after about 7 hrs at the ER. TP is taking a nap. The kids are taking a nap. And here I am writing and thinking about how I really should catch up on my laundry, dishes, and house cleaning.  I just keep thinking how much I want my mother closer. I wish she was here close to us so I would have a shoulder to cry on, a confidant, a mother. 

Tired and Feeling Guilty

Well after a long night TP is now at the VA Hospital. I fell asleep for about an hour and woke up to...."Ok You were right. I need to go to the hospital"....So I drag  three sleepy little girls from bed and we head off to our local VA hospital. Thankfully the waiting room nurse puts on some Disney Junior for the kiddies. Since I can't leave the kids unattended and can't take them back into the ER, I sit with them in the waiting room.....for an hr. I go back to check on his progress. Doc is seeing him and says he is sending him for a CT scan. So he is definitely going to be there for a while. TP sends me home with the kids til everything is done and he is cleared to go home. So here I sit home. I can't help but worry about him. I need to see if  there is a such thing as an on call babysitter. I feel guilty for not being there. All there is to do is dose myself up with lots of coffee and wait for his call. All I can do is pray we do not have anymore nights like this one. Pray we can get some of his pain  under control. Pray for some straight answers.

Insomnia, Pain and all the other Monsters Living Under Our Bed

So I guess this is a good night to start this blog....The man I love is a war wounded veteran. Tonight he is in pain.....again. Tonight I am awake....again. It seems like a neverending cycle. Not a nice smooth pretty circle...but one laced with barbed wire and the kind of potholes that are known to swallow SUVs. Forgive me if I ramble or go completely off subject. My brain likes to take temporary breaks so it doesn't overheat and catch the furniture on fire.

 So we both have insomnia....he takes meds....I take....nothing. Tonight the pain for him is bad enough to keep him awake through his sleepy meds. Not good. Now good ole genetics play a large role in our personalities....he is Italian/German....I am Irish/German. Stubborness runs rampant in our household. I worked in the medical field for a few years. So I know first hand that one of the big things in caring for a patient is documentation. If its not reported and didn't happen. So when I ask him if he wants to go to the hospital and he says no, how can I help but have the urge to give him a good clunk in the back of the head. I ask him several times to no avail.

 Now we are both smokers....we were trying to quit....did good for a while. When he is in pain he smokes.....alot. As any smoker knows....when someone lights for some reason feel the need to do the same. So the more he smokes the more I smoke. Not good. A secondary problem being we live in second floor apartment. As of right now we do NOT have a stair lift(coming soon). He has temporary paralysis from nerve impingement in his left leg. This makes the constant trip up and down the stairs fun! On top of that his awesome pain of the night is for the most part in his thoracic region of his spine and has this lovely habit of radiating thru his chest. So up and down the stairs we go polluting our lungs and paralyzing our cilia. 

He has had a rough few weeks. The pain just does not seem to be ebbing by much. We have had a busy few that has aggravated all of it. Appointments, family gatherings, birthdays, more appointments, church functions....yet another neverending cycle. And soon school will be starting. I love my kids but man I can not wait for school to start! Thankfully they love we all share the same mindset! Taking 3 girls under the age of 11 to a hospital/medical center.....not easy. I would have to say its the hardest with my 6 yr old. I always hear..."I'm bored". Doesn't matter if we brought the DS, coloring books, toys, or she can play games on my phone....its always the same thing. When its all of the kids....its like a 3 ring circus or corralling stray cattle! This one is walking to far ahead. That one is off in lala land 100 ft behind us. The other one is trying to get between me and my arms while I'm pushing the wheelchair. Someone get me a cattle prod, a lasso, and a branding iron! So I say bring on the school year!  He can do his naps....and I might get caught up on laundry....someday.