PACs uneditted

Because I am bedbound and have a lot of blocks of free time, of course I end up watching a lot of television. The political advertisements have been driving me crazy, but more so than in previous election times and for different reasons. Janet has mentioned her dislike of the advertisements on both sides because of the backstabbing and muckraking. Of coarse, I don't find these qualities redeeming but I've noticed something else about the advertisements that bothers me even more.

After about 7 PM every night, each grouping of advertising includes at least one pro-Romney or anti-Obama commercial. The majority are not directly sponsored by Romney’s campaign, but are paid for by different Republican Political Action Committees (PACs). These PACs are run by various influential Republican multimillionaires and billionaires. Because of political campaign funding laws, these multimillionaires and billionaires are limited as to how much they can fund Romney's campaign directly, but they can " hide" behind these groups and support their candidate on a much larger scale.

 I know it's all legal but it shouldn't be. There are campaign funding limits and there shouldn't be loopholes to get around them. I don't care which candidate takes advantage of these loopholes, they are wrong and shouldn't exist. The limits were made with the idea that they would help keep candidates from being overly influenced or bought.

 Similar laws exist to limit the influence that lobbyists can exert on candidates or politicians and the politicians have been brought up on charges for showing favoritism to different lobby groups. I'm trying to figure out the difference between millionaires and billionaires trying to get one of their own group into office and thus having influence over him versus a lobby group trying to buy influence over a politician. I know these situations are different, but I do see some marked similarities.

 I really appreciate the fact that Obama refuses to attempt to get much millionaire support. He started out his campaign years ago as a man of the people and he has continued to stand on that philosophy. I know that if the PAC money was taken away, Romney and the Republican Party still could personally pay for a lot more commercial time than Obama and the Democrats; it just might be a little fairer. I like the idea of getting rid of all Political Action Committees and going back to the old way of doing politics.

The O

Those of you who know me know that I enjoy women's basketball and Eagles football. I guess it's not a stretch to find out that I actually like almost every single sport known to man. Just to maintain domestic harmony, I don't subject Janet to my sports desires on a regular basis… Except every two years, at Olympics time.

 Right now I'm in seventh heaven… Every sport you can think of is available during a two-week period and Janet humors me during the O. You can watch all sorts of sports both common and unusual; table tennis, water polo, beach volleyball, equestrian, team handball, swimming, gymnastics, soccer, basketball etc. And with the advent of free cable television channels, I can find a sport I want to watch 24 hours a day. One of my pet peeves has finally been addressed; women's sports are being given equal television coverage!

 For a week leading up to the start of the Olympics, I was practically jumping out of my skin with excitement. On Friday, the day of the Opening Ceremonies, I told my health aide to watch for it that night. She acted excited, and then got a concerned expression on her face. She turned to me and asked “Those eye countries aren't going to be in it, are they?" I expressed confusion… I had no idea what she was talking about. She then said," You know, the ones we're fighting." I then figured out that she meant Iran and Iraq. I chose not to tell her that we hadn't been at war with Iran, that we were finished fighting with Iraq and we were now fighting in Afghanistan. For once, I chose to avoid the politics and the recent history lesson. In my current frame of mind, it was more important to me to tell her about the O, clearly she didn't get it.

I explained that the Olympics are not supposed to be about wars or politics; they are supposed to be above all that. They are a tribute to good sportsmanship and national pride overcoming world politics and squabbles between nations. I tried to explain how Muslims and Jews, North and South Koreans, Iraqis and Americans and Muslim men and Muslim women all of whom have disagreements for different reasons but march together peaceably during the Opening Ceremonies. Any differences they have are resolved civilly at the different athletic venues.

 I knew my argument had fallen on deaf ears when, after I thought I made my point, she then proceeded to say, “So I guess they are allowing those countries in, anyway." Sighe

 I managed to get over my annoyance and enjoyed the opening. I hate to admit it, but when I hear some of the Olympians stories, when I watch my favorites win and I see the medal ceremonies I get teary-eyed. They don't have to be American (although it helps); like the South African amputee sprinter or the British teenage diver, they or their families just need to overcome some sort of obstacle to get there. The Games turn me into a bit of a sentimental sap but I seem to like it that way.

 Unfortunately, every night NBC has the local late-night news after their prime time Olympic coverage. Every night, my cocoon of sentimental warm fuzzy feelings is burst by stories of murder, rape and robbery. Welcome back to reality. I wish the Olympic spirit would pervade our everyday lives although I know some people will say I'm being too simplistic and unrealistic.

Vote or don't complain to me

I often have people complain to me about politics in the United States, Delaware or locally or how the country or state is doing. I always suggest that rather than complain to me who can do nothing about it, why not call or write to their state or national representative. Then I get an answer that annoys me all the more…" No, I'm not political" or " I don't want to get involved like that." AAARRRGGGHHH!!! I then ask if they've voted and of course they haven't. I then inform these people they can't complain to me again until they have voted.

I thought it might be helpful to point out all of the ways… Or at least as many as I can think of… that the government affects us. So, with that in mind, you can't complain if:


·         You breathe and thus benefit from the EPA

·         You drink water or beverages made from water and thus benefit from the EPA

·         You think you may live to retire and thus would benefit from Social Security and Medicare

·         You or your child may want financial help going to college… Apply for federal financial aid

·         You and your child enjoy reading books from the public library complements of your local government

·         You and your family go to the beach and notice a beach replenishment project in action paid for with state and federal funds

·         You drive anywhere and the roads are constructed and maintained partially or in full with local, state or federal funds

·         You and your family go out to dinner to a restaurant that is inspected to ensure safety and cleanliness paid for with state dollars

·         You or someone in your family develops a serious chronic illness with no known cure…  some of the research is paid for with your federal money

·         You or a family member has to take medicine that is federally approved and inspected, of coarse paid for with federal funds

·         You and your family decide to go on vacation see the Grand Canyon or other natural or historical wonders maintained with local, state or federal dollars

·         You enjoy listening to or watching informative television and radio; NPR and PBS are partially federally funded

·         Your home catches fire and firemen with their firefighting equipment, paid for with state or local dollars, arrive and save your house

·         You have a break-in at your house; the crime is solved and your property is returned by the police, thanks to state or local dollars

·         You or a family member uses your bathroom facilities and flushes; the sewer system was built and maintained with state and local funds

As you can see from my rather long winded rant, almost all aspects of our lives are affected, I believe positively, by the government. We can't breathe, eat, drink, have fun or take a dump without some form of direct or indirect government influence. I agree that everything isn't rosy right now but if you want the infrastructure to be expanded or at least maintained and if you want the government programs you use to continue then you have to speak up. If you don't want to call or write your government representatives, then the way you speak is with your vote. If you don't want to vote, I don't want to hear your gripes…

The accident story unedited

Friends often ask me why I don't miss driving my van since I insisted on doing it for much longer than I probably should have. I think most people see driving as a reflection of personal freedom; they can get in a car and go anywhere whenever they want. I personally have a much different attitude about driving. I never enjoyed it because it always made me tense. Driving for me was a matter of necessity. I needed to get to work, Delaware's public transportation system sucked and the disabled transportation was unreliable. I didn't feel like I had a choice and I kept driving until the universe made the decision to stop for me.

 As the MS progressed, my legs became weaker and spastic and a one point I stopped driving and tried public transportation. I used it for several months to get to work and doctor]s appointments but Janet had to keep picking me up when the bus drove by me as I waited. It happened once at the bus stop locally and then twice at a transfer stop in the middle of nowhere. I complained twice to the appropriate office and they attempted to address the issue but it continued to happen. I did not want to use the disabled transportation because it was notoriously late and did not run at the times I need it. I went to my neurologist and she thought I could safely drive again after she changed my medication. Janet gave me an informal driving test and cleared me to drive so I started again.

Things were fine for several months. Then one morning, I pulled away from the curb and my leg just felt “not right." I pulled over, adjusted myself in the seat, assumed that resolved the problem and drove off again. I turned the corner, drove to the stop sign at the next corner but when I tried to move my foot to the brake it wouldn't go. As the van moved toward the intersection, my leg started to spasm with my foot still on the accelerator. You can imagine the effect. I burned rubber through the intersection and luckily made it through unscathed. I knew the next intersection was a busy one that had a traffic light so I wanted to resolve this problem before I got there. I tried to steer with one hand and move my leg with the other but I was just speeding up. I was getting desperate, so I took both hands and tried to move my leg but the spasm kept getting stronger and stronger and my leg was not moving an inch. When I tell people this story, they asked why I didn't try the emergency brake or getting the brake with my other foot. I usually sarcastically respond, " You try being in this situation and see what you think of while you're in the middle of it." That usually shuts them up.

 Anyway, I was going so fast at this point that I didn't realize that had I made it safely through the intersection… I was just concentrating on moving my damn leg. From a realistic health perspective, it was probably good that I didn't know what was coming next because I would've tensed up and caused myself injury. I didn't realize that after the intersection, the road has a gradual curve. As I struggled with my leg, the van reached the curve, vaulted over the high curb, crashed and squeezed between a huge tree and a telephone pole and a hit a car in a driveway head on. Although I was uninjured, I have fragmented memories of the event. I remember sitting there and taking a deep breath, checking in with my body, spitting pieces of broken windshield out of my mouth and then looking around. The windshield was gone, the passenger side of the van was totally crushed in, all of the airbags were inflated, and the contents of the glove compartment were in the backseat…

The neighbors that were home during the day heard the crash of course and ran over to see what they could do. A man came over and found my glasses in the driveway, handed them to me through the broken windshield and called 911. We couldn't get the driver side door open but I wouldn't have been able to stand up anyway. I couldn't believe I really was okay after all this. I wanted to go to the hospital to make sure.

 Next, a police officer arrived and asked for my license. It took a while to figure out it was in the backseat with everything else from the front area. After he reached through another broken window for the license, he took down the necessary information. He then tried to give the license back but I refused it… I was done driving. Then the EMTs arrived and I explained my physical condition and limitations. They eventually got the door open and I did attempt to stand up but almost fell. As I was going down, one of the EMTs swung me up over his shoulder and carried me to the stretcher that way and they took me off to the hospital. In the ambulance I mentioned my concern about my scooter which was in the back of the van. The EMT riding with me showed me pictures he had taken at the scene. That was the first time I really saw the extent of the damage but to my relief, I saw the scooter looking pretty intact, poking slightly out of the mangled back hatch.

 I couldn't believe the damage I saw in the pictures; the car I hit was totaled, all of the windows and tires of my van were shot, the entire passenger side was crumpled, the front end was crushed, the driver’s side was banged up and the back hatch looked twisted. There was glass everywhere and fluids from both cars were draining into the street. Apparently, the homeowners where I had the accident were not present. The car I hit belonged to their mother in law. They had taken her out to lunch in their car. It's been years since the accident, but I still imagine their reaction when they got home. It must've been priceless. I still feel really bad about it, but strangely enough I felt the worst about hurting the tree.

 I called Janet from the ambulance and she met us at the hospital. She was relieved to see I was okay and then went to get my scooter and things from the van. She said that if she had seen the van before she saw me at the hospital, she would never have believed I had survived. They checked me out at the hospital and I did not have a scratch. The frames of my glasses were bent and my scooter worked fine but the fiberglass body needed to be replaced. My father helped me find a replacement van that strangely enough was the same make, model and color. Coworkers that didn't know I was in an accident just assumed it was the same vehicle. I hired the granddaughter of a friend to drive me. Janet found a gigantic spring from the van lying on the ground in the salvage yard and took it as a souvenir; it is sitting in our garden repurposed as yard art. Other than being out the cost of the replacement vehicle, the cost of the scooter repairs, the cost of the increased insurance and the cost of my driver, the accident was not a big deal. Many of my friends and family were relieved I wasn't driving anymore anyway; they just didn't want it to happen this way. If anyone still has questions about why I am not driving anymore, please look at the following link:  http://photos.aetnahhl.org/default.aspx?aid=218

I think I could be the poster child for why people should stop driving when they are no longer physically able.

Vacation Adventure, first draft

From my bed, I can look out the window into the sunroom and see a souvenir from our most memorable vacation hanging on the wall. It is an incredibly thick braid of sweet grass, burned at one end. If you go to a powwow, you can find sweet grass braids but they are much smaller. There is quite a story surrounding the sweet grass and I'll try to relate it as best I can.

Because of my MS, Janet and I vacation in the North every summer to try and stay cool. We decided to head further up that we had ever gone, to Prince Edward Island. Since we didn't know much about it, as a librarian it was my job to research it. I ordered a bunch of books through interlibrary loan and downloaded articles off our databases. Janet's job was working on the Internet. To make things easier for Janet on the trip and because we enjoy her company, Janet Louise joined us on our great adventure. We became the traveling trio of Pam and the Janets.

 We were excited to find out that there was an Indian preserve on PEI. We have always enjoyed Native American culture and try to integrate it into all of our vacations. Lennox Island on PEI was going to be a definite point of interest for us.

 When we crossed over the bridge onto Lennox Island, we could tell it was an impoverished area. The houses were small and old, the roads were rough and there were no streetlights. The biggest and best kept buildings were the church and the visitor’s center/café. The visitor’s center seemed to be brand-new and I was immediately struck by the fact that it was totally wheelchair accessible although we knew there were no disability laws in Canada. When we went in, we noticed an artist and his assistant painting indigenous designs on the walls. Janet Louise, as the most gregarious one of our party, struck up a conversation with the artist. His name was Red Feather and he was a traveling artist hired by the tribe to decorate their new center and restaurant.

 The center was closed at the moment but the restaurant was open and the artist invited us to eat with him. The food was the best we have found so far and because it was on the reserve, there were fewer taxes. I think he was intrigued by my positive attitude in spite of my disability and even more so by Janet Louise. He introduced us to the restaurant manager and his friend. Once they realized we were lesbians, after the restaurant closed, they brought all their gay friends over. I met more gay folks in one night than I had in years. We even met the official Bacardi Drag Queen for the province. Although Red Feather was not gay, he enjoyed the gathering.

 He invited us back the next evening after the restaurant closed to watch/help with a painting of a turtle he was going to do on the ceiling. Apparently the tribe, known as Micmac in English, adopted the turtle as their tribal symbol. Ironically, it also happens to be my favorite animal partly because of the significance it has in Native American mythology. Of course we all agreed to come back the next evening. How could we not?

 When we got there the next evening many of our new friends were there along with a number of the youth of the tribe. In spite of many of the kid’s insecurities about painting or climbing ladders, within a half an hour Red Feather had them all helping out like professionals measuring and making pencil outlines. Then Red Feather made the final outline with painters tape and everyone helped fill it in. I was shocked when he asked me to climb the ladder and do the last bit. At this point, I was able to walk using a walker but spent most of my time on the scooter. I felt understandably doubtful about climbing the ladder and only agreed when he said he would climb behind me so I wouldn't fall down and Janet would stand next to me on the ground so I wouldn't fall over hopefully. I did manage to climb up and I did the last few brushstrokes on the turtle's shell.

 He said that by helping with the painting, a piece of my soul would always be with the Micmacs on Lennox Island. I would always be drawn to return there. It was a rather intense experience. Apparently, Janet took pictures during the entire time. The lighting and reflections that showed in the pictures were not there at the time she was taking them. Again, it was intense…

 Red Feather invited us back the next night for something special for me. He told the Janets what he had planned but would not tell me. When we told the women that ran the bed and breakfast where we were staying about our adventures thus far, they assured us that there was more to see on PEI then Lennox Island. For me however, what had happened so far was much more exciting and interesting than going to see the Anne of Green Gables theme park for example.

 Each time we met with our friends on Lennox Island, we learned new things about their history and culture. They referred to themselves as "First Nation People." They referred to homosexuals as “two spirits" and were much more excepting as a culture to our lifestyle. They told us a few stories about tribal history. The Micmacs on Lennox Island had always been ruled by men but as time passed, they began having financial difficulties. They voted women into the Tribal Council and the tribe began to prosper. Another story they told us was about the recent history of the island. Until about 25 years ago, there was no bridge onto the island. When they needed to go to the mainland, in the summer they would row over but in the winter they had to walk across the ice. This was very dangerous especially when the thickness of the ice wasn't reliable. One day, a pregnant woman who wanted items for the coming baby tried to get the mainland and fell through. She was rescued and the baby was fine… We met her as an adult! Because of this new disaster, the Province finally approved the funding for the bridge.

 We ate dinner at the restaurant again with our newfound friends and after dinner most of them left except for Red Feather and Leslie, the restaurant manager. Red Feather informed me that as a tribal elder, he could make me an honorary member of the Micmac tribe. He gave me a name, Two Trees. He said I had to figure out what the name meant to me. It did not matter why he chose it. Since my legs were such an issue for me at the time, the name symbolized my legs remaining strong like two trees.

 He then asked, as one who practices the old ways, if he could bless me. Of course I agreed. He lit one end of the sweet grass braid and prayed in his language while moving it slowly around me to clear any bad energy. This went on for 15 or 20 min. When he was done I was feeling pretty drained. I heard him tell Janet that he thought I could use the blessing considering what might be in store for me in the future because of the MS. He then blessed the Janets so we would have a safe journey. We invited him over for breakfast the next day and while eating he made his intentions towards Janet Louise very clear. She explained again about her sexual preference and after some more chatting, he went on his way without unpacking his teepee from his truck. We continued in our exploration of PEI.

 When we got home Janet burned copies of the pictures she had taken onto CDs and sent one to the tribal school since so many kids were involved with the painting and she found Red Feather on the Internet and send him a copy as well. She hung the braid on the wall in the sunroom and when the breeze comes in through the open windows just right, it wafts the sweet scent throughout the front of the house.

 We've gone back several times to PEI and each time connected with a few of the friends we had made. Each time the tribal community seemed to be doing better. Although the restaurant closed, pipes were being laid so that all houses would have running water and the main road would be repaved afterword. On the third floor of the visitor center, dorms were being built for a youth training center.  Thte restaurant would be the cafeteria. Although it'd be repainted, I could still see the outline of the turtle on the ceiling. I was sorry to see the painting go, but I was glad to see how the tribe had prospered.

meds rant

To:       Sen. Henry, Rep. Barbieri, Rep. Hudson. Sen. Blevins, Sen. McBride, Sen. Sokola, Sen. Hall-Long; Rep. Heffernan, Rep. Kowalko, Rep. Mitchell, Rep. Mulrooney and Rep. Schooley

Re:       Senate Bill 252

Date:    6/23/12

My name is Pam Stewart and I have the chronic progressive form of multiple sclerosis. In order to control the progression and manage the pain of the disease, I take a number of medications. Because of the cost of the copayments, I have changed the majority of the medications to the generic form. However, the medication I consider to be most important, the disease modifying medication called Rebif, does not come in generic form and is astronomically expensive.

I unfortunately learned how expensive when my insurance changed due to civil union (and I will not begin Medicare until September of this year.) When I ordered my three month refill after the change, I was advised that it was a specialty medication and I was responsible for 30% of the cost which translates to over $1,000 a month. With my previous insurance, I was paying $60 a month. Because I live on a fixed income from Social Security, this new co-pay amount was prohibitive. Thankfully, the medication company was able to give financial assistance or else I would not be able to afford the medication. I do not know if Medicare has the same tier system.

If I was not able to get the medication, my disease quite probably would have progressed. From a societal and governmental standpoint, this would have cost a lot of money because I would have run through my personal savings due to increased personal care costs and then I would have been totally on the public dole. From the insurance company perspective, disease progression means increased patient needs and increased susceptibility to further illness, thus increased costs. From either perspective, in the long run the increased cost of the medication to the patient means an increased cost to the insurance company and society.

I strongly encourage you to continue your support for Senate Bill 252. Controlling the co-pay costs of specialty tier medications will greatly benefit the patient, the insurance companies and society as a whole. I believe the Bill will serve all parties equally well.

Thank you again for your consideration of this matter. Please feel free to contact me with any questions at4 pamstew1@yahoo.com.

Sincerely,

Pamela G Stewart

Advice to the newly diagnosed

I was surprised a few weeks ago to get an e-mail from a family friend. It turns out that for the past year or so she has been exhibiting various symptoms that her neurologist was thinking indicated MS. She asked for my advice and suggestions. This is what I shared with her. I also made it clear that many of these items were things that I wish I had done. You know the old adage, " do what I say, not what I do."

·         Deny the MS diagnosis until you have three test results that all confirm MS, for example an MRI of the brain or spine showing plaques, a spinal tap showing the appropriate abnormality and either another test like evoked potentials or a combination of symptoms. Sometimes the medical profession may find it easier to put a disease label on us before completing testing. There are many other things the symptoms could be.

·         Build a health care team who acts on your behalf in spite of medical costs or insurance challenges. If you don't feel that your doctor is acting in your best interest, find another. You can contact your local MS Society branch to get lists of supportive primary care physicians and neurologists.

·         Contact the MS Society in your area for support groups for the newly diagnosed and MS related exercise groups. I especially found the MS Society sponsored Aquasize groups very helpful. Make “Use it or lose it" your personal mantra. It is very important to continue exercising as long as you can and to develop a stretching routine. Consult with a physical therapist or even consult books in the library or appropriate webpages.

·         Fight any insurance claim denials. There will be a lot of them because the insurance companies do not feel it is medically necessary to support patients with chronic medical conditions. There are at least two ways I have found to get around the insurance company's policies. First, simply request the form they require to protest the denial. Fill it out; attach a letter explaining further circumstances and a letter from your doctor explaining why the item is medically necessary. Send it in by snail mail, return receipt requested. I found that if it is not sent in this matter, the company will claim non-receipt. The other one is a little sneakier; ask your doctor to change the insurance code on the request to something other than MS. For example, if your doctor requested an electric wheelchair for you, and the insurance company declined it, the reason could be because it is not medically necessary for someone with a chronic condition to have this. However, if the doctor resubmits the request with the insurance code for a balance disorder, it may go through. It did for me!

·         Assume nothing about the future progression of the disease. Everyone is different. I've met several people who have very mild symptoms; they might shuffle when they walk or have slurred speech. These folks are still working if they want. Then there are people like me who were asymptomatic for many years and then suddenly had an exacerbation causing disability. Then there are people I've heard of like Annette Funicello, who went from walking to being fed puréed foods in a hospital bed within a month. And then there are people who fall outside of these examples.

·         Be proactive. Even if medications take away most of your symptoms, things will probably still be gradually getting harder. Act before it's a problem. Move to a one-story house, or a first floor apartment. If you job is stressful or requires a lot of physical activity, find another one that you still enjoy but that is less taxing. Start eating more healthy foods. Cut out the high-fat, and throw in the green leafies. Although it's not a problem now, you'll be thankful later.