An Encouraging Word

Last week I got an email from a gal named Sara. Sara is a home care nurse that lives in Southeast Minnesota. She takes care of a young man with Duchenne Muscular Dystrophy who is on a vent and trach.

Anyways, she read my article in the latest IVUN newsletter on wanting to get out of the nursing home and live in the community . She wanted to tell me that it was great what I was doing and to keep being persistent.

It's hard to put into words what it meant to hear this person I've never met giving me such encouragement. She made me feel so positive about my effort to try living again back in the community. All I can say to that is thanks Sara!

People with disabilities and their families just want a system that provides equality and not restriction in living life. Until things change, the fight for equality goes on.

The Nodakwheeler

Every second counts

Last night I started reading Lance Armstrong's second book “Every Second Counts”. This book covers his life after battling cancer, having kids, and winning his 1st Tour De France. In the first chapter he talks about living his daily life after facing death. He tries to do all he can to get the most satisfaction out of life. He said that we all have a choice how we handle each day. I very much agree with that.

My disease of Duchenne Muscular Dystrophy has made me think about death. Something not pleasant mind you but a reality none the less. When I was having respiratory failure, I made a choice to go on a ventilator to stay alive. People have said it was a brave thing to do but I really don't think so. I just did what I had to do to keep going, simple as that. I wasn't ready to quit living.

Now that those days of transition are over, I now face each day with many possibilities. I have tried to choose to live with as much of a positive light as I can. Though some days I get down about things and that’s fine but I just can't stay that way. I just find something to refocus me on where I want life to take me.

I just want to keep spending time with my family and friends, advocating for people with disabilities, educating people on vent use, and enjoying the things I love like music, reading, my computer stuff.

Life is short and precious. We need to make every second count.

The Nodakwheeler

Back To School

Tuesday I went back to school. Well kind of.

I went over to Jamestown College to speak to a class of student nurses about my life as a vent dependant adult. I spoke for an hour about my disability and how I came to need a ventilator. Also I addressed the pros and cons of needing a vent to breathe. Thankfully there are more positives than negatives.

It was a positive experience for me, and hopefully the students learned some valuable things from my life experiences. It's important to me that people in or entering the medical field can see that life still has a high quality for vent users. There may be an opportunity to speak to another class of student nurses next year. I look forward to doing it again.

Peace,

The Nodakwheeler

IVUN article is now online!

I apologize for not posting on a more regular basis. There are just times when I don't get to it.

Yesterday, the International Ventilator Users Network (IVUN) posted to the net my article that I wrote for their Fall 04 newsletter. They are a great organization and a big help to all the vent users out there. To view my article follow this link! or you can pay a visit to IVUN's web site..

There's not much else going this week but next Tuesday will be busy. I will be giving a presentation to the student nurses at Jamestown College. I will be talking about my life on a ventilator and how it's impacted my life. This is an excellentt opportunity for me to share my thoughts and experiences with future nurses. I will post how everything goes. Until next time.

Peace,

The Nodakwheeler