Wednesday, June 27, 2012

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.

Sunday, June 24, 2012

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






Tuesday, June 5, 2012

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.



Saturday, June 2, 2012

Annoying medical proposed legislation

I've been busy these past few weeks with a couple of writing projects. I'm entering a essay contests for my voice recognition program. There will be four winners, and they will get a free iPad and three years of updates for Dragon NaturallySpeaking. I'll give Janet the iPad which she wants, and I want the updates!


I learned from a Facebook post by an MS Society staffer that a bill was coming up in the Delaware state legislature that would be really detrimental to anyone on a fixed income that has a temperature sensitive medical condition. She went to Dover, the capital, to lobby against it. Since I can't really do that anymore, I wrote the following letter:


To Rep. Longhurst, Rep. Hudson, Rep. Short and Sen. Hall--Long,

I am writing to you regarding House Bill number 261 w/HA 1. As a long-standing Delaware resident with chronic progressive multiple sclerosis, I was disturbed to learn of the intention to amend the Delaware Code Relating to Termination of Utility Service or Sale.

The existing code protects people like myself who have a chronic progressive disease that is made worse by extremes in temperature,. When people afflicted with multiple sclerosis are exposed to hot or cold temperatures, it causes muscular and other problems that may eventually lead to the need for medical treatment and/or hospitalization. At the very least, this situation leads to extreme discomfort including the inability to move temporarily.

The part of the bill I am concerned about currently reads "In no event shall such termination occur if any occupant of any dwelling unit shall be so ill that the termination of such sale or service shall adversely affect his health or recovery." The proposed change reads "In no event shall such termination occur if the termination will prevent the use of life-support equipment or cause loss of life or immediate hospitalization of the occupant of the premises."

 As I'm sure you'll note, the rewrite of the bill does not take into consideration the fact that exposure to extreme temperatures causes people with some conditions like multiple sclerosis to experience gradual detrimental health effects. I am not just concerned for people with my medical condition. This could also have negative repercussions for the elderly and anyone with an existing health condition.

 I have no argument with the part of the bill concerning making payments towards balances owed for utilities. I agree that all customers should make good faith attempts to pay their utility bills and that utilities should be terminated if no payment attempt is made. However, if someone has made regular payments, although small, and has a documented medical condition that would be exacerbated by extremes in temperature, their utilities should not be cut.

 Thank you for taking my concerns into consideration. Please feel free to contact me with any questions.


If I learn anything interesting about the status of the bill, I'll post it on the blog. Hopefully it will just die in committee…



If I learn anything interesting