Friday, October 21, 2011
Most of the work of the group these days focuses on programs, such as Medicare, MediCal, Social Security, and IHSS (In-home Supportive Services). All these programs, in one way or another, make it possible for people with disabilities, and the elderly, to live independent lives in their communities, and in their own homes.
In the present political, and economic climate, these programs are under attack. Severe cuts to these programs could make it more difficult for many people with disabilities, and the elderly to live at home. That would mean that many more people would end up in nursing homes.
This group also aims to fight an institutional bias, which tends to favor institutionalization over community based programs. Although there has been great progress over the years in independent living, this institutional bias still exists.
The group is part of Access to Independence of San Diego (A2I), a non-profit, non-residential center for independent living (CIL) that serves the city and county of San Diego. We meet twice a month at the A2I office in Mission Valley (8885 Rio San Diego Drive, Suite 131, San Diego, CA 92108). There is teleconference equipment for those who can't physically be there. We are a fairly small group and are in need of more members. The group is run by Raquel Vega, a community organizer. If anyone in the San Diego area would like to be a part of this group, please contact Raquel Vega at (619) 293-3500 ext. 236 or e-mail at firstname.lastname@example.org
Tuesday, August 30, 2011
I browse through the catalog of e-books on Amazon.com, find a book I want and download it to my kindle reader on my PC. In a matter of seconds, the book is on my computer and ready to be read.
It is so convenient, and for a person with a disability, like me, it makes reading a lot easier. I don't have to ask someone to get a book out of the bookshelf for me, and since I can no longer turn the pages of a book, the click of the mouse, or in my case a hands-free mouse, is all it takes to turn pages. If not for e-books, I would have to listen to audio books or have someone read to me. Listening to audio books can be enjoyable, but it is not the same as reading the written word on a page.
Though e-books are a great benefit to me and many others, I still miss the old-fashioned book. I remember going to the book store, perusing the stacks and buying a pile of books. The alluring smell of new books filled the store. I recall the crack of the spine of a new book as I opened it for the first time, and the sound of pages flipping as I moved through the book. The sight of various books filling a bookshelf was always a pleasant sight and much preferable to a shelf of knick-knacks.
I enjoyed going into used bookstores and looking for low-priced treasures and coming out with a bag full of books. The dusty smell of old books reminded me of neglected relics of the past. Or going to the library and roaming through the stacks and being overwhelmed with so many choices of books to check out. There were so many ways to interact with books.
I look at my once crowded bookshelves, and now see a paltry selection of books. It's like losing friends. Books were a tangible thing that could be touched, held, smelled. An e-book is a file on a computer, which you interact with in a more sterile way.
Though I may miss these things, I have learned to embrace this new technology. Without it, I would be unable to continue my love of reading.
Sunday, July 24, 2011
Sunday, May 01, 2011
I 'm back. It has been a while since I last posted to my blog. I had some more health problems and took a break from blogging. My last two posts (Hospital, A Shocking Visit to the ER) were about my heart problems, and since then the health problems continued.
Last November 23rd, after days of feeling ill and having persistent high fevers, my doctor suggested I go to the emergency room. I am never thrilled to go to the hospital, but I knew that this was necessary. This had been going on too long and it needed to be taken care of.
I decided to go to UCSD/Thornton Hospital in La Jolla. Usually I go to Scripps Memorial Hospital in Encinitas, which is the nearest hospital. But since I had been at the ER in Thornton Hospital earlier in the month for my heart troubles, I thought it would be good to go there.
My nurse, Ernie, drove me down to the ER. At the ER, they did blood work, which usually requires quite a few needle pokes to get blood from me, took a chest x-ray, and started an IV. The x-ray showed pneumonia in my left lung. They started me on a series of strong antibiotics.
But, the pneumonia was just part of my troubles. While in the ER my heart started to act up. I had rapid heart rate and atrial-fibrillation. A few times it converted to a normal rhythm by itself, but a few times they had to use a drug through the IV to convert the heart. They managed to get it under control for a while.
After hours of waiting, I was finally moved to a room in the ICU. I was transferred from the gurney to the much more comfortable hospital bed. The gurneys in hospitals are like concrete slabs. I wonder what sadist invented them. When the respiratory therapist suctioned my trach, my heart started acting up again, and it did it again when the nurses turned me. Through the evening I kept having heart problems. The next two evenings were no different. Finally, after trial and error they found the right heart medication, Fleccanide. and for the rest of my hospital stay, my heart stayed in a normal rhythm. It was a relief to go days without my heart acting up. Now, my only concern was beating the pneumonia. As a person with Duchenne Muscular Dystrophy I understand how serious pneumonia can be if it is not under control. It has the potential to be deadly for people like me. In addition, they found fluid around my heart. The only treatment was to let it go away by itself.
Lucky for me, my hospital stay was only five days. Unfortunately I was there for Thanksgiving. It was strange not being home to celebrate with my family. This was the first time I had ever missed a holiday at home. I was feeling down that day. As I was lying in bed, bored and in need of cheer, a women brought a therapy dog into my room. The dog was a friendly golden retriever. The dog jumped up on a chair next to my bed and proceeded to lick my arm. It was like she was telling me that everything would be all right. That simple act made my day and lifted my spirits.
The next evening, my brother Bill surprised me by flying down from San Francisco and showing up at the hospital. That was a nice surprise.
During my stay at hospital , my mom, dad, brother, and sister took turns during the day being with me, and Ernie was there overnight. It is always nice to have someone there because the nurses are busy and can't always be there. Also, I am unable to push the buzzer if I need assistance. The nurses are very appreciative of the extra hands. I found the staff at Thornton Hospital to be pleasant and most had a great bed side manner.
On Monday, November 28, I was discharged. They sent me home on antibiotics. They thought the pneumonia was under control. I went home with the hope that they were correct. But, the fevers continued to plague me. One morning, while Ernie was trach suctioning me, he had trouble clearing the trach, and I was having trouble breathing. Since the ventilator wasn't giving me sufficient breaths, Ernie had to use the ambu bag to force breaths into my lungs. He had my mom call 911. The paramedics arrived and drove me to the ER at Thornton Hospital. They had to bag me the whole way. At the ER they took blood work, chest x-rays and started an IV. They diagnosed pneumonia and started me on IV antibiotics. I would have to be admitted. They had no room at Thornton, so they were going to send me to UCSD Medical Center which is farther away. Instead of going farther south, I decided to be transferred to Scripps Memorial Hospital in Encinitas, which is much closer to home. Scripps is a very good hospital and I have been there many times over the years. I was taken by ambulance up to Scripps Hospital. Once I arrived I had to do more waiting for a room to be made ready for me. After waiting hours there, I was finally taken to a room in the ICU. It's always a relief to get off the gurney.
The last time I was here was in 2006. It was a like a reunion, since many of the same nurses and respiratory therapists that treated me back then were there. I received very good care while I was there, as I did the other times I was there in the past.
I was in the hospital for five days. As usual, my mom. dad, and sister took turns spending time with me during the day, and Ernie stayed the nights. They treated me with IV antibiotics and had to wait and see. I responded well and it seemed like the pneumonia was again under control. On December 23, I was discharged and sent home on antibiotics. It was an early Christmas gift to be home in time to celebrate Christmas with my family.
It seemed like the pneumonia was gone. But, after I had finished ten days of the antibiotics, the fevers returned. I went back to spend two more days in Scripps Hospital and received more antibiotics. They sent me home without antibiotics. At the end of January the fevers returned. I saw the doctor, and he put me on antibiotics for ten days. This last regimen got rid of the last traces of infection and I have been in great health since.