Skip to main content

My new set of wheels





I am so blessed to have such awesome friends. There is no way I’d have the resources to get through this medical drama without all the angels in my life coming alongside and helping me – sometimes even with things I don’t even realize I need help with.


I had never thought about getting a wheel chair. My legs are one thing that is working quite fine. During the past three years that my lung disease has been pretty bad, I have used wheel chairs or scooters for short-term things, like attending a conference that involves a lot of walking. But why I didn’t even think of how it could improve my current quality of life, I honestly don’t know. My focus has been on walking, walking, walking – as much as I can stand and still function, and as much as the oxygen company will allow me (a blog for another day.)


Lucky for me, my dear friend Donna thought of it for me. She had a family member pass away and leave behind an electric wheel chair. Other friends joined in and transported the wheel chair a day and a half drive to get it to me. I feel like I have been liberated! As my lung disease gets worse (and unless I get a transplant before this happens) this stage isn’t going to last forever, but for now, and for however long it lasts, I can take advantage of living in a place with so much to see and do, and with public transit! I can run to the pharmacy and not have it cost me the time to go to the pharmacy, plus the hour or more it takes me to recover from the workout of the Arlington hills on the way to and from.


Ironically, my Fitbit steps have gone up since getting the wheel chair. I am actually walking more! I think this is for a few reasons. First, if I go a few days without doing a certain amount of walking, I lose ground quickly. My breathing gets worse. I feel worse overall. Second, although I lost enough weight to get listed, I have to continue that journey, and not moving won’t help. Third, I can do things I have to do, like to go the pharmacy, and have more energy and oxygen left to do the things I enjoy doing, like walking Finley. Fourth, I love Finley like he is my child. I would do anything for him, and he needs to be walked. I love watching him when we are walking. It looks like he is smiling. His tail curls and wags and he literally prances. I call our walks, Fin Therapy!


Driving the wheel chair can sometimes be exciting when you are legally blind. I don’t think I’ve ever driven it at top speed. The steering is way more sensitive the higher the speed, and the swivel wheels tend to do what their name implies when you hit bumps or uneven ground. Not racing around like I’m driving a car seems a little safer for everyone. I also have to remember that people and traffic are not aware that I might not see them (another reason for going slow on the sidewalks - so I don’t run over people because I didn’t see them in time to react.) Interestingly, however, at least in my neighborhood, the traffic in general seems more cautious of the wheel chair than they were of my cane. That is in the category of, things that make you go….hmmmmm…..


My friend Eden and I recently tried out the wheel chair access of the public bus system, and I was very pleased with how easy it is. Now, if I wanted, to say, go to one of the Smithsonians on a whim, I could. I don’t usually, but knowing I could is a great psychological boon!


Thank you friends – and look out Washington. Blind driver on the loose!


Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect