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.
Wednesday, May 23, 2007
Hypertension
Well, after a busy but pretty good week last week, we are off to a rocky start this week. I am fine but my father is the one having the trouble. On Monday evening he suddenly got a very severe headache to the point of having to lie down. When the headache had not gone away in the morning he decided to take his blood pressure which was close to 180 over 140. So needless to say he went to the doctor who in turn sent him to the ER.
What concerns me is the fact that he was nearly in an accident about two weeks ago and hit his head. He was riding his electric bike home (which goes about 20 miles an hour at the most) when he heard a car getting extremely close and moved the bike out of the way. When he swerved the bike hit the curb and he fell off. He hit his head but luckily he had his helmet on. He also had a hole above his lip. The next morning he looked at the helmet and it was dented. But being the typical male refused to go to the doctor. The next morning he had a bad headache but it eventually went away.
My mother told me he had a few episodes of high blood pressure the past week or so. Anyway, at the ER they took a lot of blood work, an EKG, a chest x-ray, and a catscan. They also gave him to doses of a drug to lower the blood pressure which gave him a bad headache so they had to give them something else to relieve the headache. We still do not have the results of the scan and they admitted him to the hospital overnight. So we will no more in the morning.
Saturday, May 19, 2007
The Dark Side Of The Moon
Last night I went to see Roger Waters of Pink Floyd in concert. It was a pretty awesome show. It had threatened to rain all day but we got lucky and it was a beautiful night for a show at an amphitheater. I think it may have rained at one point for a bit but our seats were undercover.
It was myself, my parents, and a friend of mine Richard who has Beckers Muscular Dystrophy. He met us at the show about five minutes before it started, I guess he had trouble with his ride finding the way to the place plus the traffic was horrendous. What normally takes us less than 20 minutes took about 45.
He did mostly Pink Floyd songs but also did about 3 of his own songs from his solo career. There were plenty of visuals that were definitely anti-Bush. Hard to believe that there are actually still about 30% who approve of him but I am getting off track. At one point a giant inflated pig was brought through the crowd. And right around the ass of the pig were the words "impeach Bush now". I think that was the highlight of the show.
After doing at least two hours of music they took a 15 minute break and then came back and did the entire album Dark Side Of The Moon. There were supposed to be a lot of lights and things in the audience but I guess they were having technical difficulties. And then after the entire album they did an encore which lasted at least 20 minutes. They definitely gave us our money's worth.
It was pretty awesome for me to see all of these songs live since I have heard that music since since the womb. I sure which the band would get back together and do a reunion tour. Too many big egos I guess.
Friday, May 18, 2007
Pain In The Ass
A little background before talking about the day. A few months ago I was having quite a bit of pain from what I thought was hemorrhoids. Was also getting some bleeding occasionally. So I made an appointment with who I was told was a GI doctor. He turned out to be a surgeon.
I got the appointment through my nursing agency but I guess after the fact I found out they also wanted me to at least see this doctor in case at some time down the line I would need him to do the procedure if I were to need a G-tube. His specialty is minimally invasive surgery.
Anyway, he informed me they were not hemorrhoids but Sentinel tags which I guess is basically small skin growths. I guess they usually grow near hemorrhoids or tears in the skin. His guess was that it probably was caused from bad constipation sometime in the past.
His first recommendation was to soak my butt to make sure it is extra clean. Because the pain is caused from the tags being inflamed. That seemed to work for a bit but then went right back to bothering me. I was also getting a few episodes of quite a bit of bleeding and not seeing any obvious reason for it. So I went back to him.
After examining me visually he said he could not see any reason to be bleeding externally. So he recommended I get a colonoscopy to rule out any problems in that area and he wanted me to try to have him remove the tags while they had me sedated for the colonoscopy.
Which brings me to today's appointment with the GI doctor. That doctor was not sure if they wanted to do the procedure because of the muscular dystrophy and my compromise the lungs and cardiac function. He said also the fact that I am only 31 and ordinarily there should not be any issues but said if concerned about bleeding could do a barium enema.
At first they were not going to do it at all because of what they saw as possible risks. But then decided to get all of my records from my other doctors and talk to my other doctors to get their opinions on my ability to go through the anesthesia/sedation. So a lot of things are up in the air still as far as what to do. Worst case scenario I'll just have to live with it.
I was late getting out of the doctors office and when I got downstairs there was no van. So I called PalmTran to see if I had missed my ride and sure enough I had. That part was my fault because I should have called when I only had 15 minutes until I had to be ready for my ride and had not seen the doctor yet.
What pissed me off though was when I called them they told me that the driver claims to have talked to me three times. Saying that each time I kept saying five more minutes. I did not talk to anybody. I do not appreciate being lied about. So I had to call later to file a complaint. Whatever good that will do. Not my week for confusion with my transportation.
Wednesday, May 16, 2007
Just A Good Day
Today I had an appointment with my pulmonologist which is basically a five-minute appointment where I get refills on a prescription or two and listens to my lungs. When I have to arrange transportation it is really a pain in ass considering how short of a time I am actually in their office.
As usual I got to the appointment so early that the doctor saw me before my appointment time. Which meant I had to sit around and wait an hour for my ride. At least I was a relatively nice day and got a little fresh air waiting.
I had made arrangements to go downtown after the appointment and have some lunch. If I would have realized how close the doctor's office was to where I was going I would have not used the van and simply walked. Well actually I guess my nurse would have walked and pushed.
By this time we were both starving so immediately went to the restaurant I wanted to eat at only to find out they are no longer opened for lunch. So we went to the restaurant next door which is called Legal Seafood. The prices were slightly higher than I usually pay but it was a nice treat. The food was excellent so worth the price. I also had a drink, rum and Coke. All it took was one since they made it so strong. Definitely not watered down.
After lunch we simply walked around and did some window shopping. I checked out the latest expensive televisions and stereos and my nurse looked for clothes (see if you can guess which sex they were).
We also ran into this girl who was sitting on her cell phone sending voice messages on some dating service trying to find a date. People she only was talking to for a few minutes she was trying to arrange to meet that day. A little too desperate for my taste. Interesting thing was her name was Hope. Quite fitting I thought.
I missed my ride to go home because I was waiting in the wrong spot for them. What happened was the driver who brought us there dropped us off at a different spot than the address I had given. It was just around the corner from the correct address. Stupid me I simply came back to the same location when it was time instead of looking up at the address. Luckily, a van was there picking up some other people so PalmTran had them take me home. We were just a little late getting home.
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