Living life with Duchenne Muscular Dystrophy and working towards maturity in Christ.
About Me
- Dwight
- West Palm Beach, Florida, United States
- I am 37 years old living in South Florida with Duchenne Muscular Dystrophy. I want this Blog to be a place for people to see that it is possible to still enjoy your life to the fullest despite a disability but at the same time to see some of the challenges.
Monday, March 24, 2008
Transitioning to a trach
I had a comment posted on one of my posts but I could not figure out how to reply to the person. Either you can't on blogger or I am just not seeing it. So I will write a brief applied without (hopefully) giving away this persons information. Basically, the person has a fresh trach (a few weeks ago) and is feeling a bit self-conscious about people staring. I apologize ahead of time if this person does not appreciate this blog post but I thought it important to respond to him.
I have been trached since I was about 19 years old and was very self-conscious about it for quite a while especially when going out in public. I always felt like that is all they could stare at. After some time and becoming comfortable with it I believe at least 50% of the time I was being overly sensitive. I by no means mean to imply that you are wrong for your feelings. I know they are very real.
I find that when someone stairs no matter what the reason my best response is to simply say hello. It will do one of two things; embarrass them for being caught staring and being rude or put them at ease and let them realize it is okay to talk to you. I find that most people would like to say something but are afraid because they have never had to deal with a situation like that or they fear that asking you about it will embarrass you.
It will take some time to get comfortable with both the trach and people sometimes staring. Part of the problem is that so many things in society program us to believe that you and I being disabled or different somehow makes us inferior to others. This can apply to anybody not just you and I. I have a friend who is overweight and has the very same issues when it comes to being out in public.
I wish I could give you some trick to just make all those feelings you have when you go out in public and/or people stare go away. Unfortunately, that is something that you will have to work out for yourself. You have to find a place within yourself where you can feel and realize that you are not inferior to anyone and have just as much right to do the things you do as they do.
As far as not being able to speak in complete sentences, I believe that it's not uncommon. You are lucky actually because when I was first trached I could not speak for several months. They had given me a cuffed trach but as soon as I switched to a cuffles trach I was able to start speaking that day. I had to learn to time my speech with my ventilator when I was on it. When I was not on a ventilator it wasn't quite as bad but still could not speak to the length I was used to.
I was not sure by the person to comment if they were on a ventilator or not. Or if they were using a Passey-Meur valve (I'm sure I didn't spell that correctly). They make a Passey-Meur valve when you are not on the ventilator and one for when you are on a ventilator. If you are not sure about this just ask your respiratory therapist or whoever supplies your medical supplies.
If the person who commented would like to speak to me more on this than they can contact me at my Hotmail address which is kuaika@hotmail.com
God bless you and I wish you the best!
Sunday, March 2, 2008
A Beautiful Weekend
I had a great weekend. It was a beautiful day on Saturday. Only about 72° or so with the sun shining. Managed to wake up to buy 10 a.m. which is good for me. Was out of the house by a little before 1. We headed to the movie theater and saw The Bucket List.
It started out a little slow but turned out to be a great movie. But hey, how could you go wrong with Jack Nicholson and Morgan Freeman? It was good therapy for me with the recent death of my friend. Some of it really reminded me of them especially since we used to do quite a bit together. Even without that it was a very good movie. You'll laugh and you'll cry.
Afterwards we had lunch at Friendly's. While I did not have room for dessert I made sure to get something to go to eat later as a late-night snack. It was some sort of chocolate fudge Brownie dessert. It was so rich I could only eat half of it if that.
Then after getting home and resting for about an hour I was able to watch the online Saturday night service at my church. It was good and was able to chat with some people from the church afterwards.
Then this morning my brother came for breakfast and brought his new puppy. His name is Prince and is Boston Terrier mixed with boxer. Him and my dog Emma wrestled almost the entire time he was here. So it was a great weekend all around. Until next time.
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