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."


Anonymous said...

Hi, Kari! Good to hear from you. My email isn't coming through this morning, so I'll write here. I'm going back to see Amy on Thursday, so just let me know if you'd like to go with me. I have the whole day off, so we could have a good time and not have to rush. Amy is still troubled about the fluid restriction, so it's good to be there to offer her some distraction.
I'm going to see my folks this weekend, so will talk to you after Sunday. Hope to see you soon! Love, Diane

Anonymous said...

Thanks so much for sharing so much of yourself with us. You have a beautiful spirit and I love to read what you have to say.

I take hours to get ready myself so I can definitely relate to being late all the time!

God Bless

Anonymous said...

Hi Kari,
Thank you for sharing the details about your daily experience. I read your blog often and am inspired by you and Aaron. I get frustrated by bad drivers and losing cell phones. I can't imagine spending 3 hours getting ready every day. You are really amazing.
Ty Wilde

Anonymous said...

Hi Kari...

Thank you so much for sharing yourself with us...It is amazing what you go thru on a daily basis, but an amazing blessing also..I am so encouraged to this day by your story and what I think is an inconvience or hassle is nothing to what some such as yourself experience daily..I am so hopeful that our mutual friend Amy will get to have her life outside of the hospital some day..
Blessings to you and your husband...
Karen :-)

Cerise said...

This is good. I'm glad you wrote this, because I really wanted to know. I have this thing about being peculiarly interested in others' normal routines anyway. Thank you for sharing so much of your life with your blog family, love.

Nathaniel said...

Hey Kari,
Thanks so much for opening up (both in this post and the things I miss one)...I'm sure it's not easy...but it has to feel good to share. We love you and pray for you through the good days and the bad days. Oh! And I'd love to teach Aaron how to braid the next time you're back! :-)
Much love,