In Memory

On Saturday Brian and I went to a memorial for one of our friend’s mother. It was very nice, with many people sharing wonderful memories of her. As with all funerals and memorials I have attended, I think the people who have passed would have loved to hear the wonderful words spoken about them. People should know how much they are loved and how well thought of they are, before they die. Why do we wait until somebody has passed away before we tell them how much they mean to us? Why do we wait until it is too late to recall the good qualities of a person? We share memories and laugh and cry. It does help us cope with the grief of losing a loved one but I think the person who needed to hear it the most can’t hear it at all. I would rather have a celebration of life than a celebration of death. When I realize my time is up, I am going to have a Going Away Party (also known as Going To Hell in a Handbasket Party). I want to hear what people think of me. I want to know if I made a difference in someone’s life. I want to laugh and burble (Jenny’s word for me when I cry at anything that strikes an emotional chord in me) with all of my friends as they tell stories about me. I want to celebrate my life; how thankful I am to have been here; for Brian and Wendy and Kevin and the rest of my wonderful family; for the joy in my life and for the sorrow, that has made me appreciate the joy even more. And when I die, we will know that nothing was left unsaid and we have no regrets between us. And hopefully I will be remembered for enjoying life instead of remembered for dying.

Flat Tire (not the beer!)

The other day, I was taking an older friend of mine to her hairdresser, the bank and the store. I do this once a week since she cannot drive any more. Brian was with me and we were enjoying the warm sunny day. On the way from her house to her hairdressers, my car started making a funny noise. After I dropped her off, I pulled out to find a place that could check my car and find out what the noise was. I was afraid it was a transmission problem and would be very costly. I had to pull back in to the hairdresser’s parking lot as the noise was so bad, it was scary. My front tire had split from the metal part of the wheel (my technical terms) and I needed to change my flat tire. I have never done this before but I was grateful that it wasn’t anything worse like the tranny. Brian didn’t remember how to do it so I went inside for help. There were women and one happy (gay) man working on hair. The happy man came out to see what he could do, which was the same as me....nothing. He had never changed a tire and didn’t even know how to work the jack. So I used the phone book to call a tow truck to come change my flat. The charge was $60 which I didn’t have. So I went back outside and told Brian we would try to do it ourselves. Luckily there were directions with the spare, and an hour later, we had the tire changed. I put the tire iron on the lug nuts and Brian was able to loosen them for me and tighten them when we put the new tire on the car. The hardest part was getting up off the ground from my seated position. We were so pleased that we were able to conquer the flat tire by working together. We always say that I am the brains and Brian is the brawn. Together we almost make a whole person!

Caring Voices

It is the new year and I have been approved for a grant again from the Caring Voice Coalition to help cover my costs for Letaris, a drug that costs $60,000 per year. The Caring Voice Coalition is a non-profit, charitable organization, established in 2003. It serves the needs of individuals affected by serious, chronic disorders by providing financial assistance, insurance education and counseling and patient support. They assist patients improve their quality of life. They currently serve patients diagnosed with Alpaha-1 antitrypsin deficiency, chronic granulomatous disorder, huntington’s disease, idiopathic pulmonary fibrosis and pulmonary arterial hypertension.
I am so grateful that Caring Voice has helped me and others. They are so caring and kind when I talk with them. Until recently, the diagnosis of pulmonary arterial hypertension in a patient with scleroderma was the most sure death sentence in all of rheumatology. New drugs on the market such as Letaris have extended the lives of those patients, but the costs are high. I would not be able to take Letaris because I wouldn’t be able to afford my co-payment for it if it weren’t for Caring Voices. The Caring Voice Coalition accepts financial contributions from both the public and private sector to assist patients with severe, chronic conditions. Anyone may support the Caring Voice Coalition, including state or federal foundations, individuals, and private or public corporations.
My medical records show that I have systemic sclerosis (scleroderma), gerd, fibromyalgia, or myosistis, hyperlipidemia, hypothyroidism, sjogren’s, raynaud’s, cervical spine disc disease, pulmonary fibrosis, pulmonary arterial hypertension, avascular necrosis, and glaucoma. I take several medications to control my symptoms and I incur the cost of the meds as well as visits to the Doctors each month and for labs and tests. With my medical history, I am so grateful that Caring Voices sees me fit to help with a grant for Letaris. With our economy as bad as it is, we have to put our dollars to good use. If you are able to donate to a charity this year, Caring Voices would be a wonderful group to consider. It is groups like Caring Voices who give us hope for a better tomorrow.

Be Careful Where You Live!

I met a lady about my age the other day who had Scleroderma and Pulmonary Hypertension. She was put on an IV directly into her chest and is infused with Tracleer 24 hours a day. She has been like this for two years. She lives in Rancho Cordova. That adds to my theory that something in the water or air in that general area, by Mather AFB and by Aerojet may be what triggered the two main diseases that Brian and I have. The trigger manifested in us differently reacting in different disease processes. We lived in Sacramento bordering Rancho Cordova, and used Mather’s water supply. Between 1958 and 1966, waste solvents and transformer oils were disposed in a waste disposal pipe at Mather AFB. In 1993, the State looked for the pipe but could not find it. But they found trichloroethylene (TCE) in the shallow water bearing zone in the area. Three underground storage tanks and associated contamination were removed in 1993. In 1987, two tanks, one containing diesel fuel and one containing gasoline were removed because of leakage into the area. From 1982 until 1993 when the base closed, a total of 89 areas with significant contamination were found on base property. In addition, 5 groundwater plumes were identified as contaminated.
Approximately 10,000 people live within a 1-mile radius of the site, and approximately 60,000 people within a 3-mile radius of the site depend on groundwater for their main drinking water supplies. We lived within the three mile radius. I am not saying that everyone in the area is sick or will get sick. But people like Brian and I have a susceptibility to something that triggered our disease process. Records from 1987 state: “Soil and groundwater contain various volatile organic compounds (VOCs), gasoline, diesel fuel, metals, pesticides, and other contaminants. There is the potential for human exposure to these hazardous chemicals by accidentally ingesting, inhaling, or coming into direct contact with contaminated soil or groundwater.” We lived in the area from 1980 until 1998. In 2006 a review of the hazard removal at Mather states, “Factors that can influence the health effects when human beings are exposed to hazardous materials include: the dose the person is exposed to, the frequency of exposure, the duration of exposure, the exposure pathway (route by which a chemical enters a person’s body), and the individual’s unique biological susceptibility.” Environmental investigations into Aerojet which backs up to the Mather site began in 1979. Those findings mirror Mather’s hazardous waste problems. Since 1953, Aerojet and its subsidiaries have manufactured liquid and solid propellant rocket engines for military and commercial applications and have formulated a number of chemicals, including: rocket propellant agents, agricultural, pharmaceutical, and other industrial chemicals. In addition, the Cordova Chemical Company
operated chemical manufacturing facilities on the Aerojet complex from 1974 to 1979. Both companies disposed of unknown quantities of hazardous waste chemicals, including TCE and other chemicals associated with rocket propellants, as well as various chemical processing wastes. Some wastes were disposed of in surface impoundments, landfills, deep injection wells,
leachate fields, and some were disposed of by open burning. Underlying the site are extensive 40 to 100 foot-deep dredge tailings, a remnant of past gold mining operations. Reading through the paperwork on the impact to humans and the environment in both areas, there is a rather long list of hazardous materials. Of the ones I have mentioned, trichloroethylene is known to cause brain damage, kidney and liver damage and respirtory problems among other things, including cancer and Parkinson’s disease. (My father had Parkinson’s and we lived in Orangevale, close to the Aerojet site. Perchlorate can health problems, among them, low levels of thyroid, which I have and I take Synthoid to replace my thyroid hormone. In 1990-1996 the hypothyroidism rate in Rancho Cordova was 1 case / 1300 births, where the national average was 1/4000. At this point I don’t believe I can prove my theory. We do not know the cause of Scleroderma so contamination can not be pinpointed as the cause of my disease. Many researchers feel that several factors work together to induce scleroderma, such as a genetic inclination along with exposure to a toxin or infection which triggers the illness. We don’t know the cause of Alzheimer’s either, though it is clear that it develops because of a complex series of events that take place in the brain over a long period of time. It is likely that the causes include genetic, environmental, and lifestyle factors. These are only two of the hazardous waste products found on the sites. I am sure if I were to look futher I would find many more coralations between the hazardous waste areas and our diseases.

The Best Man Won!

I am so looking forward to a new President and a change in administration. I voted for Obama because I think he is the one to change the future of our country, not because of his race. Brian and I have liked him since we saw him on Oprah two years ago and have followed him since. It disturbs me that so many Black people seem to think the win for Obama was about race when for me it had nothing to do with race. Being white and living on the Pacific coast has enabled me to live a life free of most of the racism found in the south. There is no way I can understand the mind of a Black person who has lived with racism and sees Obama’s win as a win for the Black population. I just hope that some of those people know that we voted for the person who we felt was right for the job and don’t see racism as an issue. How can we go forward and abolish racism when so many of those who cry racial discrimination are overjoyed to point out the racial differences of our new President?

January Blues

The holidays are over and my Christmas things are almost all put away. Wendy and the Kids have been here since Thursday night. The kids stayed with us Friday and Wendy ended up leaving work early, sick. I took my friend Shirley to get her hair done, go to the bank and the store late Friday afternoon. I usually take her once a week since she can not drive anymore. I ended up not feeling well on Sat. and missed going to my niece Jenny’s for craft day and also seeing my niece Lisa Sat. night at my sister’s. Wendy and the kids left tonight, Sunday. I was supposed to go get Kevin to stay two nights but we decided to wait until tomorrow. He is watching the King’s game and I kind of like the peace and quiet right now. I love the fact that the kids come and stay with us once or twice a week. They really help us and we enjoy their company. Kim is picking up our laundry tomorrow. She doesn’t know what she is in for. We have only been doing what we need to do so there is a big pile that needs to be done. She is so great to do our laundry for us. We have laundry facilities here but it cost six quarters to wash and six to dry. So I have to stock up on quarters. Then I have to go back and forth 6 times to wash and dry one load. It may not seem like much, but as you know, breathing and walking are not compatible for me and I have to stop to rest a couple of those times. Wendy and Kevin do a lot of washing for us but I have to make sure I have the quarters on hand. So I am appreciative that Kim doesn’t mind doing laundry for us. And lots of times, we get a free meal out of it too if we take the laundry over to her house. I have to find things to be happy about in January. January is a horrible month for me. I hate the cold weather, the holidays are over and I get depressed. I can’t wait til spring!