Sunday, April 27, 2008

Things I miss...

Hello peeps...

I have just felt like writing lately. I've felt compelled to write about some of the more intimate things of my daily life. And again, I don't write these b/c I'm looking for pity or sympathy. I just write b/c this is my blog and I can do whatever I want. :) And b/c it's healing for me to do so.

So I am thinking about the things I miss:

holding hands
holding babies
brushing my hair
braiding my hair
rubbing my eyes
sleeping on my stomach
my old clothes
pants that fit
my old shoes
feeling comfortable socks on my feet
a cup of warm coffee in my hands
drinking without a straw
crossing my legs
sitting/laying on the couch
holding a book
my handwriting
burying my face in clean laundry
folding clothes
planting flowers
feeling sand on my feet at the beach
curling up into a ball
climbing rocks at Joshua Tree
petting my cats
driving alone
wearing dresses
being comfortable
laying my hands on people to pray for them
typing with my fingers
feeling pretty
being warm
opening doors

Those are just a few. There are a few things I don't miss. That's another list for another day.


Thursday, April 17, 2008

Life as a Quad

I've been thinking about writing on this topic for awhile. I'm not writing this so you will know "how tough I have it", but because people often ask me what a typical day is like. It's always hard to answer that b/c I'm never sure how much people really want to know. So in case you've ever wondered, here is a pretty detailed description of a day in the life of me:

Aaron's alarm goes off around 5:30. He gets up, after pushing "snooze" a few times, around 6. Before he leaves at 6:40, he puts the phone ear piece in my ear and makes sure the voice activation is turned on. I go back to sleep after he leaves (usually) until my caregiver Anna arrives around 8:30-9. When she gets here I call Aaron to let him know he can stop worrying. :)
Anna gives me my morning medicine and then begins the process of getting me up. I have an indwelling catheter so first she changes my "night bag" over to my "leg bag." The leg bag is strapped to my leg and periodically emptied throughout the day. She then pulls me up into a sitting position so she can get my sling around me. The sling is attached to my lift which lifts me out of bed so Anna can position me into my shower chair. After I'm in the shower chair we begin my bowel program. *Note: If you want to know more about this process in detail you can google it. * That's as far as I will go on the subject. After that's done we head to the shower. That's pretty self-explanatory. I shower like everyone else accept I sit down the whole time. :) After the shower Anna dries my hair, brushes my teeth, and occasionally I get makeup. That's usually an exciting day. (Just for the record: When Aaron gets me ready, he does the best job on my hair and makeup. The only thing he can't do is braid my hair.)
Anyway, after all that, Anna puts my shirt on and we do the sling/lift transfer thing back to bed so she can put my pants on. My pants have to be extra long, slightly stretchy, have no back pockets, and 4 sizes too big. It makes shopping really interesting. After my pants are on I do the sling/lift transfer thing to get into my normal wheelchair. Fitting me into my chair is the last step. We make sure I'm not sitting on any wrinkles in my pants or leaning against shirt wrinkles. My lap strap and chest strap are put on as well as my elbow stops and laterals. These keep me properly positioned throughout the day. And voila!! Just like that, I'm ready for my day... 2 1/2- 3 hours later.
By the time we're done it's time for lunch. Anna feeds me a simple lunch, gives me more medicine, and my day as a "normal" person begins. Depending on the day, my afternoons are usually busy. Two days a week I go to physical therapy. And Wednesdays I go to the church. I have different people who pick me up for those appointments.
Aaron gets home around 4-5. Evenings are nice. Pretty normal.
At bedtime Aaron gets me out of my chair with the sling/lift and puts me to bed. He positions me carefully and makes sure all the wrinkles are out of the sheets. He makes sure that my weight is distributed evenly so no single area of my body has extra pressure on it. This prevents pressure/bed/skin sores. That's why we are so obsessed with wrinkles. They can cause welts on your skin. Since I can't feel it we are very careful. Aaron then changes my leg bag to my night bag so he doesn't have to get up in the middle of the night to empty it. (The night bag is bigger.)
I sleep really well-especially since I started PT. And then we start all over again the next morning.

I guess that's about it. It's a challenge...and almost every day I get annoyed at the whole getting up process. It takes too much time, it's humiliating for lack of privacy, and it's totally out of my control. We are usually late for everything, which I hate, but it is what it is.

So all that to say...I love my life. I love my husband, my family, my friends. I'm thankful for all my equipment, my caregiver, and good health overall. And I'm thankful that I'm still created in God's image.

"For now and always, Christ will be exalted in my body."

Thursday, April 03, 2008

One more inch...

I remember Richard (Aaron's dad) writing on this blog just a few days/weeks after my injury and asking people to pray for just one more inch of movement and function to return to my spinal cord. My injury is at a C-5 level. This gives me the ability to move my shoulders, biceps, and a little forearm. Since I've returned home in the last two years, I am definitely much stronger. And just a few days ago I was able to begin physical and occupational therapy on a regular basis thanks to Medicare. In the evaluation process we discovered that I have a very strong wrist extension. This means that I can lift my wrist at almost full strength. This is a very solid C-6 level of function...just one more inch below C-5. I am going to declare this an answer to prayer.
The PT and OT were impressed with my strength and are looking forward to teaching me more function. I missed out on a lot of therapy at Craig because of my extreme pain, numerous infections, and 40 days of whatever that was. I was basically sent home with a bag full of splints and adaptive equipment with very little knowledge or training in how to use them. So I'm looking forward to finally learning how to feed myself, brush my teeth, comb my hair, drive my chair with a hand drive, etc.
For the last two years I have struggled with a lot of guilt in not learning how to do these things. And every time someone asked me about physical therapy, the guilt just piled on. Most people don't understand that I don't exist just to deal with my paralysis now. I still am trying to live a fairly normal life and contribute to society and don't want to spend hours a day in physical therapy. Not to mention all the hours it takes to just get up and then go to bed every day; finding transportation; and constantly staying on top of doctor's referrals and insurance issues so this can actually be paid for. Maybe in my next posting I will write about what a typical day looks like for me.
Anyway, I don't know if all that makes sense or not. I just wanted to let whoever is still reading about us know that I have "one more inch." And for that I am thanking God.