Monday, December 31, 2007
The year got off to a rocky start when in January scar tissue in my trachea created an obstruction to my airway, which caused me to stop breathing a few times which led to three visits to the E.R. and two short hospital stays. After the last ordeal, the doctor removed some of the scar tissue from my trachea. The problem was solved. But, nine months later after no problems with my trach, the obstruction returned and I stopped breathing a few times. This led to two visits to the E.R. in two days. The doctor advanced the trach tube past the scar tissue and the problem was resolved again. At the end of October I saw another doctor who ordered a different trach to hopefully prevent future problems. I hope to get it soon. (see blog posts of 3/14, 10/15, 10/17, 10/30/2007)
In March, I regained my voice. Trying to communicate with out a voice was a very frustrating experience for me and those trying to figure what I wanted. The thought of being mute didn't sit well with me. I was determined to talk again. With persistance and the help of my nurse, Ernie I acheived my goal.
In July, I celebrated my 39th birthday with a western-themed party with friends and family. It was an ideal way to spend my birthday. 39 isn't a particularly special birthday, but it was to me. When I was so sick in 2006, I was uncertain if I would see my next birthday. (see blog post of 7/9/2007)
In August, I attended my 20 year high school reunion. I enjoyed seeing and visiting with classmates I hadn't seen in years. I think many of my classmates were surprised to see me there. It was very nostalgic. (see blog post of 8/13/2007) I took in an abandoned kitten that my sister found. Lucky has turned out to be a joy and a comfort to me. Watching him play is also one of my simple pleasures. (see blog post of 9/1/2007)
In October, I went to the Miramar Airshow at the Marine Corps Air Station Miramar in San Diego. It was a fantastic show, especially when the Air force Thunderbirds performed their death-defying maneuvers. (see blog post of 10/12/2007) At the end of the month, wildfires raged throughout San Diego County, causing over 300,000 people to evacuate their homes and destroying around 1500 homes. My home was in the path of the firestorm and I had to evacuate for three days. It was a nerve-wracking time for everybody. The hard work of the firefighters prevented my home and other homes in my immediate area from burning. (see blog posts of 10/21 and 10/25/2007)
I had a nice, low-keyed Thanksgiving with my parents. I was thankful to still have a home. (see blog post of 11/22/2007) A few days later, I rocked out at the Van Halen concert in San Diego. It was awesome. (see blog post of 11/26/2007)
The year ended with a wonderful and joyful Christmas spent with family. (see blog post of 12/26/2007)
A summary of the year would not be complete without mentioning those who are no longer around. I lost two special people in 2007.
Aunt Kathryn (1923-2007)
In March my beloved aunt and godmother passed on after losing her valiant struggle with cancer. She was an integral part of the family and her death has created a void that cannot be filled. Not a day goes by that I don't miss her. She was a woman with inner strength, compassion, and grace. Whenever we went to her and my Uncle Bill's home, she was always happy to see me. She was a very welcoming person. Everyone was welcome at her house, including ex sons and daughters-in-law, and even strangers. She accepted people for who they were.
Lianne Harding (1963-2007)
In May, a friend of mine from the adult Muscular Dystrophy support group, Lianne Harding died suddenly at home. She was always concerned with others and enjoyed life despite her disability. Though she was frail in body, she was strong in spirit. She was an integral part of the support group and is still missed. (see blog post of 5/21/2007)
Wednesday, December 26, 2007
On Christmas my family attended a church service at the Village (Presbyterian) Church in town. I am not a church going person, but I went because my niece, and nephews were taking part in the children's Christmas pageant. Also, my family was chosen to light the advent candles and sing a song. My mother, sister, brother-in-law, niece, and nephews belong to the church. I am a lapsed member; my father and brother never were. Since my father never attends church, my mom jokes that people think she's not married; they probably didn't know my brother existed until tonight. It was enjoyable to see the kids act out the story of the nativity and sing. They forgot their lines a few times, and the donkeys were wrestling and pulling each other's tails. My niece, Dallas had a solo singing and my nephew, Sterling had a speaking part and a singing solo; my other nephew, Stetson was one of the shepards. I was so proud of them. In the minister's sermon, he said that it would not be Christmas without children. How true that is.
Friday, December 21, 2007
This is my favorite time of year. I just love the Christmas spirit of peace, goodwill, and giving. It would be great if this spirit lasted all year round. I also like that it is a great excuse to gather together family and to see friends.
Other things I like about Christmas:
- The music. It really gets me in the Christmas spirit. Songs such as Rudolph the Red-nosed Reindeer, Frosty the Snowman, The Christmas Song, I'll Be Home for Christmas, White Christmas, Silent Night, Jingle Bells, Happy Xmas (War is Over), Feliz Navidad, The Most Wonderful Time of the Year, A Holly Jolly Christmas, Jingle Bell Rock, Santa Claus is Coming to Town, Winter Wonderland, and Silver Bells. But, I could go on and on.
- The decorations. There is something joyful about seeing houses, trees, yards and buildings festooned with colored lights and decorations. It brings out my inner child and brings a smile to my face. Seeing the Christmas tree adorned with lights and decorations and colored packages arrayed around it gives me a warm feeling inside.
- The Christmas shows. Rudolph the Red-nosed Reindeer, Frosty the Snowman, Santa Claus is Coming to Town, A Charlie Brown Christmas, A Christmas Story, A Christmas Carol, and the music programs on PBS and other stations. It would not be Christmas without them.
- Seeing the excitement and joy in my niece and nephews at Christmastime. It brings back memories of Christmastime as a wide-eyed and excited child waiting for Christmas Eve and Christmas Day to come. The arrival of Santa Claus bearing gifts on Christmas Eve was the height of excitement for me.
Above are pictures of Lucky enjoying the season. He's had fun climbing the Christmas tree, swatting ornaments around, or running away with them in his mouth. He must think we filled the house with decorations just for him to play with.
Wednesday, December 12, 2007
Wednesday, December 05, 2007
The reason I have always liked Rudolph the Red-nosed Reindeer is because I could relate to him. It is about being different and not fitting in; a theme I am well aquainted with as a disabled person. I remember as a child being excluded because I was not like everybody else and being made fun of. The nice part is that in the end Rudolph is accepted by the community despite the fact that he is different. It is a good lesson for life.
Monday, November 26, 2007
Friday, November 23, 2007
Thursday, November 22, 2007
- My Family because of their support and love, most especially during the times when I have been hospitalized and in life threatening condition. They gave me the will to pull through and to live on.
- My friends because of their support, acceptance, love, and because they too have given me the will to live on.
- My life because I am alive due to life-prolonging technology, and because I have a lot to live for: my family, my niece and nephews, and friends. Also because my power wheelchair and accessible van gives me freedom to get around and out of the house.
- That I am able to live at home and not in a nursing home. This is made possible by my nurses who take such good care of me and allow for my independence.
- That I have a roof over my head. This is more important to me since the recent wildfires in San Diego County destroyed so many homes, and my home was threatened with possible destruction by the fire.
- The firefighters because they saved so many homes including my own during the San Diego wildfires.
- My cat, Lucky because of the comfort and joy he provides me.
Thanksgiving is one of my favorite holidays because of the gathering of family, which has always been important to me. The turkey, mashed potatoes, gravy, cranberry sauce, and pumpkin pie used to also be my favorite part of the holiday. But, now that I no longer eat, that part of the holiday is now a pleasant memory. Thanksgiving dinner would not be the same through a feeding tube. It was hard to find out that I was no longer able to swallow to eat, especially when I would no longer be able to eat my favorite foods, or any food, but I gradually became resigned to the reality. It is still difficult at times to be around people eating, but I can focus on other things and put it out of my mind. I let people eat around me because I don't want people acting differently on account of me. Dysphagia, or problem swallowing is not the end of the world, it is a new adjustment to make in my life; something I've been doing my whole life with Duchenne Muscular Dystrophy.
Saturday, November 17, 2007
Today we went around the circle, as usual to see what was new with everybody since the last meeting. David also asked us each to talk about a Thanksgiving memory. Mine was the time my family rented a houseboat on Lake Mead for Thanksgiving. We were going to fish for our food. Big mistake! After a day of fishing, all we had to show for our efforts were a small sunfish and a catfish. Our pitiful Thanksgiving dinner for the five of us was a few Tater-Totts and some fish. The dinner was not so great, but the important part was that we were all together as a family. To this day we still laugh about it.
Tuesday, October 30, 2007
Thursday, October 25, 2007
I went to sleep Sunday night feeling safe in my home. The wildfires burning in San Diego County were too far away, especially the Witch Creek Fire near Ramona, about 30 miles away. How wrong could I be! As I slept, the Santa Ana winds continued to blow west fueling the fire (see previous blog post 10/21) and causing it to advance over the bone dry hills, valleys, and canyons towards the coast and destroying hundreds of homes in its wake. The phone rang at 5:30. It was my cousin Greg; His family had to evacuate their home in Poway down the mountain from Ramona. About two hours later, the phone rang: it was my sister. Her family had to evacuate their home in Escondido (about 20 miles to the northeast of us). They were headed to our house. Less than a half hour later, the phone rang again. It was a reverse 911 message telling us to evacuate. I couldn't believe it. My mom woke my nurse, Ernie, who was sleeping in the guest room between shifts. He quickly got me up in my wheelchair, gathered some supplies, and we were out of the house.
Outside there was a fog of smoke and ash, obscuring the sun and creating an eerie, orange glow. The winds were gusting and ashes were raining down all over the place. I hurried into my van. The windshield was covered with soot. We drove out. My mom followed behind in her car; my dad decided to stay behind. The driveway was littered with twigs,branches and leaves blown down by the strong winds. As we drove out of town the ash continued to fall and eddys of ash and soot swirled around.The roads were covered with a layer of soot and ash. We drove straight to Scripps Memorial Hospital in Encinitas. I was supposed to go to the evacuation center at the Del Mar Fairgrounds, but I was afraid they wouldn't have the proper accommodations for me.
Once at the hospital I rushed inside. The smoke made its way into the E.R. waiting room. I took refuge in the radiology department waiting room. While there I picked up x-rays and CT scans for my medical procedure Thursday. I had planned to go there today anyway. They were nice enough to let me hang out there all day. I spent most of the time following the news of the fire on the radio. Another fire in Fallbrook (in the northernmost part of San Diego County) forced Ernie's family to evacuate their home. He stayed with me. Fires were blazing all over the county. It was unbelievable. It was getting worse by the minute. My dad finally left the house and went to a family friends house in Leucadia, near the coast. My mom was already there with her cat, Sassy, and my cat, Lucky. Also, my sister was there with my niece and nephews, one of their dogs and the turtle. Her husband stayed behind with their other dog, two rabbits, and the bullfrogs.
That evening I was informed that I had to leave the hospital because it wasn't an evacuation center. They suggested I find a motel or hotel. There was not a room to be found; because of the fires burning all over the county, about 250,000 people were evacuating. My sister contacted her neighbor, who is on the Board of Directors of Scripps hospital. He called the hospital and told them I was staying the night. It helps to pull some strings. They gave me a bed in the corner of the E.R. overflow unit. They bent over backwards to make sure that Ernie and I were comfortable.
After a restless sleep worrying about whether I had a house to return to, I woke up at 5:00 and turned on the news. A reporter was reporting from my town of Rancho Santa Fe. Houses were burning up the street from my house. I had a sinking feeling in my gut. Later, a social worker told me I had to find other accommodations. They only allowed me one night. She was very helpful. She found me a place to stay after calling around and even called some of my medical supply companies to have supplies sent to the hotel. She tried to see if some board and care places would take me in, but they wouldn't take me because I had a feeding tube. I have no idea why not. She found a hotel called California Suites in San Diego, away from the fires. I drove down there, settled in and watched the news. Houses had burned on streets near my house. I wasn't sure if my house had survived the early morning firestorm.
The father of one of my classmates from my town, Dr. Buncher and his brother Martin contacted my mother and asked if I got everything I needed from the house. My mom told them I left my bedside ventilator, bedside suction machine, and clothes. They got through the roadblocks by dressing as firefighters (Martin used to be a volunteer firefighter and had uniforms). They made it to our house and called my mom to tell her they were standing in our living room. Our house had survived the early morning firestorm intact. I felt great relief, yet some trepidation; we weren't completely out of the woods yet. The Santa Ana winds were still blowing, and there were still hot spots that could flare up and start new fires. My dad got my equipment and delivered it to the hotel.
My sister told me that our house was threatened by the firestorm. Flying embers ignited trees near our house. The firefighters got on our roof and made a stand against the fire. Thanks to their actions they saved our house and others in the immediate area.
Today I was still not allowed to return home. There were still many hot spots that could flare up. My parents got through the roadblocks and went to the house to get more of my things. The house still stood. It was undamaged. What a relief that was! We dodged a bullet.
To pass the time Ernie and I decided to drive up the coast to Oceanside. Before driving the coast we drove inland towards my house to see if they would let us through; Ernie left some medicine at my house. As we neared my town we met the roadblock. There was a National Guard Humvee with armed soldiers standing nearby. They were there to keep people, especially looters, out of the area. They wouldn't let us pass. We turned around and tried to get in through another street. We were met by another National Guard roadblock. The soldier politely turned us away. We gave up our quest and decided to continue on to the coast. It was nice driving along the coast. The air was a little bit better but the sun was still obscured by smoke. In Oceanside we stopped at the hotel where Ernie's family evacuated to. We visited with them for a while. Then we went to Costco, where Ernie bought food for his family, and I picked up some more things I needed. After dropping off the food we drove back down to the hotel. On the way back we tried to get into my town again by another route. At the National Guard roadblock we were turned back yet again. This proved to me they were doing a good job protecting our community. Looters would have loved to get into my community. Also, they were keeping us safe. There was still danger from hot spots. Back at the hotel I watched the news coverage of the fires, trying to find out when my town would reopen. I slept well that night with the knowledge that I would have a home to go back to.
This morning as I wondered if I would go home, I was also a little nervous about my medical procedure today to remove scar tissue from my trachea. The phone rang: it was the UCSD Medical Center. My procedure was cancelled because the doctor had a family emergency. Now my thoughts were focused solely on going home. I waited in the hotel room to get the green light to return home. I watched the news anxious to find out when I could return home. After what seemed an eternity, my mom called to give me the good news: we could go home! Ernie packed up my stuff and when my dad arrived they loaded my stuff into his car and my van. With little delay we were headed home. It was a great feeling to drive up the driveway and see the house standing there. It was even better to be in the familiar surroundings of my home. Though I was elated to be home, I felt sad for those in my town and around the County who didn't have homes to return to. Over 1500 homes were lost in San Diego County to the fires. The nerve wracking ordeal was finally over. Every time the Santa Ana winds blow from the east there will be anxious feelings and fears of another conflagration. I hope we don't go through this ordeal again anytime soon.
My nurse, Ernie stayed with me the whole time I was evacuated and remained calm and collected. Even though his wife and kids had also evacuated their home, he chose to stay and take care of me. His loyalty and consideration is commendable. I am lucky to have a nurse like him.
On a somber note. My thoughts go out to our friends Michelle and Mack and their children, Michael and Mellissa who lost everything as a firestorm destroyed their house. I hope all the best for them as they and their children rebuild their lives from the ashes.
I am also very thankful to the firefighters for working day and night in oftentimes grueling conditions in their fight to stop this beast of a fire and to try to save homes. We should always be grateful for the service these firefighters give to us. Hats off to all of them. To me and countless other people they are heroes.
Sunday, October 21, 2007
All day the smell of smoke has been heavy in the air, while a pall of smoke has been hanging over us; the sun glowing orange through the smoke and ash and creating an eerie orange glow over the landscape. As I write this blog, two wildfires are burning out of control in San Diego County; one in the south, another to the east. The fire in the east, called the "Witch Creek Fire" is burning near the towns of Ramona and Santa Ysabel about 30 miles, as the crow flies, from where I live. With all the smoke and ash being blown from the east to the west, it seems like the fire is just around the corner. Lucky for me it is not. I hope for the best for all those people forced to evacuate their homes, and hope they have homes to go back to.
Wednesday, October 17, 2007
Again I had the usual chest x-ray. But, this time they had to do the dreaded blood work. I am very difficult to draw blood from. I usually end up like a human pin cushion from all the poking. Luckily, I was only poked twice. The RT(respiratory therapist), Janet, who has worked with me many times over the last 13 years, came in the exam room to set up the bronchoscope. Unlike the two stooges who had trouble setting up the bronchoscope during my E.R. visit Saturday night, Janet is very much on top of things. I have a lot of confidence in her. Dr. Clark soon came in. To my relief, he had contacted Dr. Eisman, who gave him advice on how to handle my situation. He put the bronchoscope down my trach and saw the flap of scar tissue in the trachea that keeps blocking my trach tube. He advanced the trach farther past the obstruction. After he was done I was allowed to go home. But, I will need to undergo a procedure soon to have the scar tissue removed.
Monday, October 15, 2007
When we arrived at the hospital, the E.R. waiting room was almost empty; a good sign that they were not very busy. After a somewhat short wait, they called my name and I was allowed in the E.R. First I had to meet with the triage nurse. She was told what the problem was, and then took blood pressure, and temperature. I was promptly ushered into a procedure room to wait, and wait for the doctor. While waiting, the nurse hooked me to the heart monitor, automatic blood pressure monitor, and pulse oximeter to measure my oxygen levels. My heart rate was 120. The nurse told me to relax and not to talk. When she was gone I continued to talk. It wasn't the talking making my heart rate go up, it was because I was stressed out from what happened to me earlier! They also took a chest x-ray. After a while the E.R. doctor came in the room to evaluate me. At the time I was breathing well, and by the doctors tone it sounded like he would send me home. During the evaluation I needed suctioning. Again the catheter met resistance and I couldn't breathe. My nurse, Ernie grabbed the ambu bag and got me breathing again. This convinced them there was a problem. The E.R. doctor contacted the pulmonologist, Dr. Eisman. I was relieved that he was on duty. He knows what to do. That put my mind at ease.
Soon two R.T.s(respiratory therapists) entered the room with the broncoscopy machine. The two stooges couldn't figure out how to connect the equipment. My nurse, Ernie helped them connect it. He was an RT in the Navy so he knew how to do it. It's unbelievable they didn't know how to do it. The doctor came in and put the bronchscope down my trach. He found a flap of scar tissue at the end of the trach tube that was causing the obstruction. He advanced the trach tube past the scar tissue and the airway was completly clear. I was soon allowed to return home.
Friday, October 12, 2007
Friday, October 05, 2007
Saturday, September 29, 2007
Tuesday, September 25, 2007
Tuesday, September 18, 2007
Saturday, September 15, 2007
Saturday, September 01, 2007
Monday, August 13, 2007
In some ways it feels that graduation was only yesterday, yet other times it feels like ages ago. Time flies and I am left with fond and not so fond memories. High school was full of a mix of both. Yet if we didn't have bad memories, the fond memories would not be so sweet. I am glad to have been a part of the class of '87. For the most part, it was, and still is a fine group of people.
It was interesting see how everybody has changed in the last 20 years. Some people have changed more than others. Some people were hard to recognize, yet others were unmistakable after all these years. No one had trouble recognizing me. It is hard not to miss me since I was the only student in my class in a wheelchair.
The Reunion was held at the Marriot Hotel Del Mar. Over 2oo people showed up, a far better turnout than the 10 year reunion. People were more at ease at this reunion. After10 years people are still out to prove themselves. After 20 years this pressure is less evident. I felt a positive vibe in that ballroom. People were mingling all over the room. Very few seemed to ever sit down. It was great to hear the joyful sounds of laughter and of delight of reunion with classmates not seen for many years. There was so much chatter that it was hard to hear. Even the music was drowned out. That just proves that there was a good time. Everybody was so busy talking that few people danced. Hearing the music of the times brought back many memories.
I really enjoyed visiting with people I haven't seen in years, and people I didn't know. I felt that they were glad to see me. Many people were probably surprised that I am still alive and kicking. There were times when I wondered if I would see this day. It was even better that I have my voice back so I was able to talk.
Sunday, July 29, 2007
A. You must post these rules prior to giving your facts.
B. You then must post eight random facts about yourself on your blog.
C. At the end of the post, you must tag eight more bloggers.
D. Then you must visit each blog and leave a comment that they’ve been tagged.
Unfortunatly, Scott already tagged the bloggers I know. So I will just list my random facts. But, if anyone reading this would like to share 8 random facts about themselves, just email them to me (firstname.lastname@example.org )
Here are my eight random facts about me:
In 1982 on a school trip to Washington, D.C., I happened to meet President Reagan during a tour of the White House.
I am a big fan of the band Los Lobos and saw them in concert several years ago.
In 1988 b.v.(before the vent) during a trip to Venezuela I went to the rainforest in Canaima. I don't think they ever had someone in a wheelchair there.
In 1984, I attended the opening ceremonies of the summer Olympics in Los Angeles.
I am a baseball fan. My team is the San Diego Padres.
I am not a big fan of rap music.
Jeopardy! is my favorite television show. I qualified to be a contestant, but they couldn't figure out how I would buzz in to answer the questions.
I am a history buff.
Monday, July 09, 2007
I had a big birthday bash on Saturday, July 7. I have had a party almost every year for the last 9 years. There is nothing I like more than spending time with family and friends. So, I use my birthday as an excuse to get everybody together. To me that is the ideal way to celebrate my birthday. Gifts are no longer important to me; to me the gift is being with friends and family.
The party was held on the nice, big lawn at the house of my sister, Bibbi and her husband, Rick. It was decorated in a western motif. There were hay bales, wagon wheels, and cow skulls scattered around the yard. There were cowboy hats for those who didn't bring one. The caterers had quite a spread of western style foods. I couldn't eat any of it, but I am glad the guests enjoyed it. I had my non western tube feeding. They don't have barbeque tube feeding. It was great to see the adults mingling and the children romping around. Everybody seemed to be having a genuine good time. The phrase eat, drink, and be merry truly applied.
The highlight of the day was the performance of the magician who performed some amazing tricks.He started his act swallowing fire (ouch!) One trick involved making a bird dissappear, then he took out a lemon, peeled it and inside was an egg. When he cracked the egg open, the bird flew out. In another trick he had a milk carton and poured out all kinds of drinks such as milk, chocolate milk, root beer, apple juice. The children really loved that trick. When he was done he ripped apart the carton to show that it was a regular milk carton with no hidden compartments. The most amazing was the finale when he levitated his daughter with a single broomstick to hold her up. I could not figure out how he did it. I always enjoy a good magic show, especially when I can't figure out how the tricks were done.
After the magic show, my 8 year old niece, Dallas Rose got up on stage and sang a song. It was very touching; I don't think there was a dry eye there, including my own. Dallas also had the idea to have a lemonade stand with the procedes going to the Muscular Dystrophy Association. She wants to give the money to MDA during the Labor Day telethon in San Diego. What a thoughtful little girl! After that my sister had activities for the kids such as sack races and egg toss. It was great seeing the children enjoying themselves.
I returned home from my party feeling elated and blessed to have such a wonderful family and group of friends. I couldn't have asked for a better way to celebrate my birthday. Next year will be an even bigger milestone when I reach 40. I plan on being there.
Wednesday, July 04, 2007
Today I attended the annual July 4 parade in my hometown of Rancho Santa Fe. It is a nice community event and has a quaint, small town feel.
Sunday, June 03, 2007
Monday, May 21, 2007
Her husband of 17 years, Bill truly loved her and strove to bring happiness and enjoyment to her life. He stood steadfastly by his wife's side. He always looked out for her. When he was on active duty in the Navy, he always made sure Lianne would be well-looked after when he was out on deployment. He should be commended for the dedication to his wife. Many men might find it hard to deal with a wife's progressive disability, but not Bill. He never gave up on Lianne.
Wednesday, March 14, 2007
The surgery involved removing some muscle tissue from my neck and using it to seal the fistula. It was a success. I was put in to a drug-induced coma for three weeks so as not to undo the surgery. On July 3 I returned home. Since then my recovery has been slow and frustrating. I have had a few setbacks with my trach. Scar tissue blocked my trach quite a few times; twice I stopped breathing and blacked out. Luckily, my mom knows how to use the ambu bag! The paramedics were called both times and I was rushed to the hospital. I have been hospitalized twice and been to the ER numerous times since returning home. I've become a regular at Scripps Memorial Hospital in Encinitas. They should name a wing after me. I lost the ability to swallow; I am fed formula through the peg in my stomach. Also, I am not able to talk most of the time. But, I am hopeful to regain my voice. I am determined not to lose my ability to speak. Although I have gone through many trials and tribulations over the last 10 months, I feel that my life is slowly improving. I am glad to have cheated death once again.