Say What?

A while back I shared that while I was in the hospital I had my belly pierced, that is to say, I had a feeding tube installed directly to my stomach. I use it to supplement my regular eating. A friend asked me the other day if I was going to go on a Tubing Bender over the holidays. What? We laughed a lot over it when she explained that it would be a great way for me to drink alcohol since I don’t like the taste of it. I think I’ll pass on that suggestion since I wouldn’t want the aftereffects of an alcoholic bender either.

Another Hospitalization

Well, I’m still alive after 12 days in November ensconced at our local hospital. For the second year in a row I’ve spent a holiday in the hospital, this time Thanksgiving, whereas last year it was Christmas. I had some sort of respiratory infection that some thought was pneumonia and a few other issues that I won’t go into here. Long story short, I came out with a belly piercing to envy all others. I now sport a handy-dandy feeding tube. I can still eat, but the medical staff decided I don’t eat enough to properly nourish my body, so I supplement with medical quality formula through a feeding tube directly into my stomach. Exciting!

I’ve been home from the hospital for a couple of weeks now and I’m just starting to feel somewhat normal again. Hospitalizations always have a bad effect on me and it takes me a while to get my mojo back. It has started to crop up now and then, so things are looking good.

Living with Limitations

Karen here, finally. With all the posts he’s written lately, I’m sure some of you thought Norm had taken over my blog. When I’m not feeling quite up to it, or busy with other tasks that take my full energy, I let Norm write as many blogs as he wants. He went crazy this time, but I don’t mind.

Most readers of my blog know that I am a lifelong member of the physically challenged community. I’ve never walked and I’ve had to learn to live with many physical limitations. Spinal Muscular Atrophy Type 2 is a progressive condition and the older I get the more limitations I must learn to live with. I fight it though as long as I can because I value my freedom. However, I’m also learning with age – a.k.a. wisdom – that some new limitations are better to be dealt with as fast as possible.

Here’s an example from my own life. Almost a year ago I ended up with a kidney stone that had to be removed surgically. I was in the hospital over Christmas and it took me a good two months to fully recover from the ordeal. A couple of months before the kidney stone cropped up I had an episode of dehydration and an unknown urinary tract infection that put me in the hospital for a couple of days. That event was actually a warning sign that I did not give enough attention to at the time.

For a long time I have unconsciously and sometimes consciously limited my fluid intake because I need help going to the bathroom. During the day my husband can assist me with this personal chore. If I knew he was going to be around I would intake as much fluids as I wanted, but when we went out to places where I thought I could not use the restroom or if I knew he was going to be gone for a few hours, I would not drink anything or very little.

At night I would stop drinking about three hours before going to bed so that I could make it through the night without having to go to the bathroom. For many years this had worked for me but in the last couple of years it had become a problem. For probably about six months to a year before my kidney stone episode I would feel the need to go to the bathroom in the middle of the night, but I would hold it until my husband woke up in the morning or until it was urgent, whichever came first.

The combination of limiting my fluid intake and holding my urine for many hours created the perfect conditions for dehydration, urinary tract infection and kidney stone. After my health crisis I realized I needed to make some changes in my life: increasing my fluid intake and choosing to wear adult diapers during the night. It’s been almost a year now and I must say that wearing adult diapers has made my life a lot less limited.

Awkward Humor

My blog is titled “The View from My Chair” because sitting in a wheelchair sometimes gives one a different perspective.  I have been using a wheelchair my entire life, so that perspective is ingrained in me.  I’m also someone who has a weird sense of humor and when that humor gets filtered through my different perspective it becomes awkward humor.  Here’s an example.  Today I ran across the phrase non 12 step program.  Not being sure of what it referred to, I came up with my own definition: rehab for someone who needs a ramp.  Laughing out loud!  Okay, maybe you don’t get it, or maybe you don’t think it’s funny.  I certainly don’t think drug and alcohol addiction is funny.  I did some research on the phrase and discovered that it refers to medical rehab for addictions.  That makes sense even considering my  humorous definition.

If I Were A Guy

Do you ever think about what it might be like if you were the opposite sex? Don’t get me wrong, I love being a girl… I’m just saying for instance if I were a guy getting around in a wheelchair might be totally different. Okay, I suppose I could phrase this another way. What if I were the kind of girl who liked guy things? Things like ATVs and football and wrestling.

Growing up as a power wheelchair user I got teased a lot about my wheels. High school guys would invariably ask me if I could off-road in my wheelchair or if I went on the freeway. I was offended by this since I was a girly girl. Maybe if I had had ATV wheels I would’ve gotten asked out by high school guys a lot more? It’s certainly something to consider. Maybe being teased about something isn’t so bad if you look at it the right way. It was the guy’s ways of breaking the ice with me but I didn’t see it that way. It would have been a lot different if I had.

A Day of Grace

So it was July 4th and since we don’t live near the family I like to do something different on the holidays so I don’t feel so homesick. The plan for this one was to make a quick trip to Paris via the movie theater. We met another couple at The Camel View theater and watched Midnight in Paris. We all enjoyed the movie and felt as if we had spent a couple of hours in Paris and in another era. I highly recommend the film.

As Norm and I were driving home our van died at the intersection of Thomas Road and Miller Road. By the grace of God we were right in front of a firehouse. I got out of the van and went to the firehouse. Someone pulled up beside Norm and asked if he needed help. It turns out it was this guy, Kevin, we knew from a long time ago and had not seen him for several years. He was able to push the van off of Thomas Road so Norm wasn’t in the middle of traffic at the intersection.

Kevin offered to take me home in his pickup truck, but transporting me and my motorized wheelchair is not a simple process. I thanked him for his help and his kind offer and said that I would probably find another way to get home that would be easier on me physically.

Norm joined me at the firehouse where we sat alone in their kitchen because the firemen had gone on a rescue. They were in the middle of making dinner when I showed up, they invited me in and then had to leave. I’m so glad that we were there because it was a really hot day and I needed someplace cool and safe to wait until other arrangements could be made to get us home.

Fortunately, Norm’s cell batteries were fully charged because we needed to make a lot of phone calls. I called a couple of taxi services before I found one that was wheelchair accessible, but they couldn’t promise a vehicle to pick me up for at least three hours. Then I remembered a friend’s name who lives in our neighborhood and is a wheelchair user like me. We didn’t have his phone number with us, but one of the firemen found him in the phone book. Thank God he was home and his brother came and picked us up in their wheelchair accessible van.

Norm and I made it safely home and we were so glad to be there. The firemen pushed our van off of the street and into their parking lot where it could stay safely until we could arrange for a tow truck for the next day. Because it was a holiday we were having a hard time finding a tow truck available.

Our friends who met us at the movies helped us to get the van towed for free via their AAA account. That was another grace of God.

It turned out that our van needed a new fuel pump. We were without the van for four days. It seemed a lot longer! We definitely don’t take our wheels for granted. I mean it’s not like I can just call a cab or ride with anybody unless their vehicle is wheelchair accessible. That, my friends, is one of the drawbacks of the wonderful life I live as a gimp girl. Other than that it’s great!