Monday, September 24, 2012

Thoughts About Health

Since I'm able to feel, I have pain in my neck, shoulders and back. I have lots of therapy throughout the week to help reduce and even try to eliminate it. Sometimes the pain is constant and hard to deal with and other times it's gone altogether. There is not much more I can do to get rid of it besides stretching and occasional pain meds like ibuprofen. One thing that tends to happen is that I can tell that I am in pain simply because of the way my body responds (I have muscle spasms) but I may not be able to feel it completely. Then I have to take a combination of meds for pain and spasms.

As far as my nursing staff goes, I understand that working for a C-1 C-2 quadriplegic paralyzed from the neck down isn't always easy. I try to give my nurses breaks whenever possible to allow them to rest their body. Some of my nurses have pain as well in different areas, either from old injuries or working for me. I've had my physical therapist, Nicole, come out and give the nurses training so that they have good body mechanics when moving me.

One of the biggest things is for someone to recognize when something is not feeling right with their body and making sure that they get it taken care of. Especially if it could get worse and cause more damage or pain in the future. I found this list of thoughts that people may think to themselves when they experience feelings about their health and they are ignoring it or don't think it's that bad. Take a look at it and see if there's a dangerous thought that you're thinking about your health that may just be worth taking a second look at.

The 10 Most Dangerous Thoughts About Your Health

Which one is yours?
1. Maybe it will go away.

Are you willing to risk that it won't?

2. It comes and goes.

Why wait until it is a constant problem?

3. It's not that bad!

Compared to what?

4. It only hurts when I…

If your tooth only hurts when you drink something cold, is the problem cold water or a cavity?

5. I know what my problem is…

What is your solution?

6. I was told I've got to live with it.

Don't give up on your body or your body will give up on you.

7. I don't want to know.

What you don't know can hurt you. What you do know can help you live a fuller life.

8. I don't have any symptoms.

Did you know that the first symptom in over 57% of heart disease is a heart attack?

9. I don't have time.

If your time is valuable, can you afford to ignore your bodies signals and risk being affected for weeks, months or even your lifetime?

10. I can't afford it… My insurance won't cover it.

You can't afford not to. What insurance covers your car payment, your rent/mortgage or your groceries? You find a way day after day, month after month to pay for these necessities… What about your greatest necessity, your health?

When any of my nurses tell me they're in pain and therefore aren't able to do things how I normally do them, I most likely will hear one of these 10 reasons why they haven't been able to address it. I can understand to an extent, but it also affects my body whenever I am being moved differently because of someone else's pain. Also, it can sometimes limit some of the stretches and position changes that I do. I think it's important for everyone to not just think everything is okay with their health because they have an excuse on why not to get it taken care of.

There have been multiple times over the past 10 years where my body has told me something is wrong and I listened by going to the ER or getting on some medication. There are also multiple times I could have (or almost) died had I ignored the signs my body was telling me. I'm grateful when I know something isn't right and that I make the right choice to do something about it, for my own health and benefit.


Wednesday, September 19, 2012

My Friend Karly

On August 20, 2012 my friend Karly passed away. She spent her whole life battling Rett syndrome, a disorder of the nervous system that affected her body and speech. Also, because of the neurological aspect of it she had seizures and uncontrollable breath holding along with hyperventilation. Without the use of her voice and the control of her body, Karly struggled with communication up until the age of 10. That's when her family and therapist figured out a way for her to communicate using facilitated communication; with the help of someone supporting her arm she was able to use a keyboard to type out her words letter by letter. The person helping her could then translate what she was saying allowing her to express her feelings, wants and desires. She also wrote blog posts and amazing poetry along with creating music, all by facilitated communication.

I first learned about Karly on the radio, and through that went to her blog site. I left a comment sharing my story. She got back to me right away and after a bit we set up a time to meet at her house. My first impression was pure amazement; I was mesmerized by her intellect, kindness and accuracy as she typed out what she wanted to say throughout our entire conversation. I went home with a new perspective on communication and the different abilities of people with disabilities. We got together many times after that, including meeting at the Science Museum. She introduced me to her therapy horse, Beau and I got to know her family really well.

Although I'm sad she's no longer here, I know she's in a better place. Karly's faith was stronger than anyone I've ever known and she was very much at peace. Her blog and words were read by thousands around the world and she helped many families dealing with Rhett syndrome. According to her mom, after her passing it received over 10,000 visitors. She taught me to live life to the fullest and to not let challenges stand in your way. She will never be forgotten and I'm proud to call her my friend.

Earlier this year Karly wrote a poem in which she instructed her mom to post on her blog after she passed away.
The Invitation
The music of heaven fills my heart with longings I cannot ignore
The time spent on earth full of its possibilities,
becomes a distant memory
compared to what I see through weary eyes
I leave my love behind to offer as a beacon
for those who wonder if it’s true,
I have seen, I have heard, I am certain
It’s a small step for me now on this path
I hear the tears of many who have loved me so well.
Love another like you loved me,
and this world will be a better place.
I see the face of God
I see my new beginning and I am full of joy
I will watch for you, please come.
Karly Whalin
February 17, 2012

Thursday, September 13, 2012

The Minnesota State Fair

A week ago Monday I went to the Minnesota State fair. I met my sister, Kristen and my boyfriend, Blake there. I haven't gone for a few years. When I am there, I have to be careful where I go. There is a place called "the midway" that has a bunch of electronic games you can play with tickets to win prizes. Two years in a row when I've been at the fair in that area my ventilator has reacted funny. It starts beeping and malfunctioning; we think it's because it reacts with of all the electronics. Both times we had to have a respiratory therapist come out and switch my vent. Since then I haven't gone to "the midway" because I'm afraid something like that will happen again.

Two years ago was the last time I was at the fair and it was extremely hot and very crowded. Nothing changed this year. I had a lot of fun but I think I got heat exhaustion. It was at least 90°F outside and very humid. Even though I was drinking a lot of water, my body couldn't cool itself down. I don't sweat below the level of my spinal cord injury at C-1 C-2. This is common in most people with SCI's. Sweating is very important in order for someone to regulate their temperature when they are really warm. Because I don't, it's hard for my body to control its temperature. If it's hot I'm hot and if it's cold I'm cold. It took my body a while to cool down, but after I did I felt much better. (Click here to read another post about SCI's and body temperature.)

The biggest craze for people when they go to the state fair is the food. A lot of times that's why people go. They have everything you can imagine deep-fried including bacon, candy bars, pickles etc. They also have just about every type of food you can imagine on a stick such as what's mentioned above along with alligator, cheese, ostrich, chicken, cheese cake, etc. I've been told though that I'm no fun to go to the fair with because I'd rather eat a salad over something fried or junk food. When going there, the thing is to get a plate of something and share with everybody in the group so people get a taste of a bunch of things and not full on just one thing. When I was there I ate some of my sisters Australian fried potatoes, a bite of a Pronto pup (deep-fried hotdog), a couple of cheese curds and the grilled corn on the cob. I had never had the latter before, but I love corn and it was so good. That's probably the only thing I would definitely have to get next time I go.

What's your favorite thing at a fair, Carnival, or amusement park either in Minnesota or where you live?


Tuesday, September 4, 2012

Blogging Again!

I keep starting new blog posts and not finishing them. I think I have about six or seven Microsoft Word documents saved to my desktop, all blog posts about something different. It's been at least two weeks since I've posted anything. I don't know why I've been having such difficulty finishing a post but I am. Maybe it's some sort of writer's block or something like that. Well I'm definitely going to be blogging more frequently now.

I started school last Tuesday and I'm taking geology with a lab (two lectures and one lab in one week, all on separate days). I really like it so far, especially since I love rocks so much and collecting them. I was signed up originally for the geology class and also a public relations class online, but I ended up dropping the latter. I don't need the credits for the class in order to graduate with my Associates in communications in December.
More blog posts to come soon.