I am not as active in my church as I used to be. Part of the reason is that we moved further away, and the other reason is that the increasing fatigue I have been struggling with the last few years has made me less inclined to get up and go somewhere unless I absolutely have to.
Today, September twenty-third, would have marked my twenty-third wedding anniversary had I not divorced my husband nearly two years ago. I had planned on staying close to home today, in part to examine my thoughts and feelings about the date. A few weeks ago, I agreed to attend a meeting after church today. I am really interested in the discussion, plus I knew it would probably be better if I didn't stick to my initial plan. Also, it would give me an opportunity to experience a service with our new interim minister.
I had decided on the way to church that I would get up during the "joys and concerns" portion of the service to mention my recent Lyme diagnosis, along with the fact that I had embarked on an aggressive treatment plan. As I sat through the beginning part of the service, I realized that I wanted to mention the anniversary as well. After all, it was part of the 'concern' occupying my mind.
When the time came and the microphone was in my hands, I easily shared the story of my declining health and the probable tie to the Lyme that I was recently diagnosed with. There were immediate murmurs of sympathy and support. Then, with a growing catch in my voice, I mentioned the anniversary. Many in the congregation knew my ex-husband as a pleasant soft-spoken man. Many had also been informed of his post-divorce diagnosis with ALS and his institutionalization, since he can no longer care for himself. Part of the reason for the institutionalization had to do with his declining mental state. In my acknowledgement of our anniversary, I mentioned the illness and how he was no longer the man that most of him had known. The reaction to that was still supportive, but there was also an air of discomfort.
After the service, many people came up to me to talk to me about the Lyme diagnosis. But some also came up to me to offer me comfort on a day they could tell was difficult for me.
What we see of people in public places is not always who they really are. Just because you see someone for an hour or two every week doesn't mean that you KNOW them. To really know someone takes an investment of time. To really know someone you need to experience them in a number of different places and situations. And finally, I think you need to see them in their home when they are relaxed at the end of a long and congenial evening (on top of the other experiences). Only then might you begin to see who they really are.
Only a few people at church have some true idea of what went on towards the end of my marriage. A few others think that they do, because of what my ex-husband said to them during that time. While I do not want to diminish the warm memories any of his friends at church may have of him, I do hope that they come to realize that there is always more to people than what they let you see in a limited venue for a few hours a week.
Sunday, September 23, 2012
Saturday, September 22, 2012
In which we try to attack the Lyme, that we don't "medically" have
As many of you know, I have been suffering from ever-worsening chronic pain and fatigue for a number of years. Doctors have sent me to physical therapy, have put me through numerous tests, and finally have prescribed me symptom-managing drugs. I suspected that I might have Fibromyalgia. This past Spring, one of my physicians official diagnosed me with the Syndrome. As a result of the diagnosis, and her experience with my leg/hip/back pain frequently making it difficult for me to walk long distances, she even signed a request for me to get temporary disability tags for my car.
When discussing the diagnosis and related health issues with some friends on Star Island this Summer, several of them vehemently stated that I have Lyme disease. They asked if I had been tested. There are two insurance-accepted tests for Lyme disease, ELISA and Western Blot. I tested negative on both in the last year. These tests look for a specific number of serum markers. There are more comprehensive tests that my friends encouraged me to look into.
When I returned from vacation, I had a sleep study scheduled. I have been getting more sleepy during the day over the past year. No amount of sleep seems like enough. It took several weeks to get the study results back to the provider who ordered it. She told me that there is nothing going when I sleep that shows anything abnormal (very little snoring, no apnea, normal REM cycle patterns). However, during the day study I showed an extreme ease in falling asleep. Sleep affinity is measured on a scale of 1 to 20. 1 being virtually asleep all the time, and 20 being too awake to fall asleep. My score was a 6. To manage my wakefulness, we ended up going with Aderall. So basically, I'm on amphetamines now, on top of pain meds, muscle relaxers, NSAIDs, and anti-seizure drugs to get rid of shooting pains and tingling.
During one of my check-in visits, I mentioned to my sleep doctor that I was thinking of getting a comprehensive Lyme test since all of my symptoms, including the "idopathic hypersomnolence" that she diagnosed, fell in line with Lyme. Turned out that she had some of the test kits from NeuroScience, Inc. So we drew the blood samples and sent them off to their lab.
My doctor called me on a Saturday morning to tell me that she got my results back. She knew how important this was to me. If I have an infection that is treatable, that is so much easier to accept than having a Syndrome that I'll have for the rest of my life. She told me that her interpretation of the results was that I definitely have a long standing case of Lyme. We agreed to meet later in the week with someone from the lab on the phone to confirm our understanding of the results.
That evening I watched "Under Our Skins" a documentary about Lyme disease and some of the controversies around its diagnosis. There appear to be two vehement camps in this discussion. The Establishment camp consists of the CDC, insurance companies, and most infection disease doctors, who state that Lyme disease is easily detectable with the two tests they recognize and that all the other diagnostic tools out there, or different interpretations of the two recognized tests, are flawed. That patients who do not show as 'positive' on their tests do not have Lyme, but are suffering from something else and should not be treated like they have Lyme.
The other camp of doctors and patients claim that there are multiple strains of Lyme that will not test positive with the narrow definition proclaimed by The Establishment. These doctors, many of whom become members of the International Lyme and Associated Disease Society (ILADS), stand by more comprehensive testing and a less rigid interpretation of Western Blot and ELISA test results. Most of the people who end up as their patients have been bounced around from doctor to doctor, diagnosed with all sorts of chronic syndromes and diseases that have to be suffered through but that cannot be cured. Once these patients end up with an ILADS provider, they are examined for THEIR SYMPTOMS first and are given the standard AND more comprehensive tests to CONFIRM a diagnosis of Lyme or related infection. If this (non-Establishment-based) diagnosis holds up, these patients are treated intensively for an infection that they probably have lived with for years and years. Many to most of these patients GET BETTER with this treatment. Very few suffer lasting side effects from the treatment they are given.
I am not one of those patients, being treated by an ILADS provider using strong doses of antibiotics and supporting supplements to attempt to drive an infection from my body. I received fair warning that there may be uncomfortable side effects during treatment. The antibiotics may make me nauseous, headachey, or give me diarrhea for one. Once the antibiotics start working, the die off of the organisms will release their toxins into my system en masse. So, it is likely that I will feel worse before I see any benefit to the treatment. As rotten as I've been feeling, it is worth the downside to me. Primarily, I want to stop the progression of what has been happening to my body. The last year in particular has been extremely tough. I have even toyed with the idea of going on full disability, which I really can't afford to do.
I took my first dose of mega antibiotics last night with dinner. I haven't been hungry enough today to eat enough food to take my next dose. Hopefully, I can do that soon. Also, I hope to check in hear at least weekly to document the progress of the treatment. If anyone is still checking in here, wish me luck.
When discussing the diagnosis and related health issues with some friends on Star Island this Summer, several of them vehemently stated that I have Lyme disease. They asked if I had been tested. There are two insurance-accepted tests for Lyme disease, ELISA and Western Blot. I tested negative on both in the last year. These tests look for a specific number of serum markers. There are more comprehensive tests that my friends encouraged me to look into.
When I returned from vacation, I had a sleep study scheduled. I have been getting more sleepy during the day over the past year. No amount of sleep seems like enough. It took several weeks to get the study results back to the provider who ordered it. She told me that there is nothing going when I sleep that shows anything abnormal (very little snoring, no apnea, normal REM cycle patterns). However, during the day study I showed an extreme ease in falling asleep. Sleep affinity is measured on a scale of 1 to 20. 1 being virtually asleep all the time, and 20 being too awake to fall asleep. My score was a 6. To manage my wakefulness, we ended up going with Aderall. So basically, I'm on amphetamines now, on top of pain meds, muscle relaxers, NSAIDs, and anti-seizure drugs to get rid of shooting pains and tingling.
During one of my check-in visits, I mentioned to my sleep doctor that I was thinking of getting a comprehensive Lyme test since all of my symptoms, including the "idopathic hypersomnolence" that she diagnosed, fell in line with Lyme. Turned out that she had some of the test kits from NeuroScience, Inc. So we drew the blood samples and sent them off to their lab.
My doctor called me on a Saturday morning to tell me that she got my results back. She knew how important this was to me. If I have an infection that is treatable, that is so much easier to accept than having a Syndrome that I'll have for the rest of my life. She told me that her interpretation of the results was that I definitely have a long standing case of Lyme. We agreed to meet later in the week with someone from the lab on the phone to confirm our understanding of the results.
That evening I watched "Under Our Skins" a documentary about Lyme disease and some of the controversies around its diagnosis. There appear to be two vehement camps in this discussion. The Establishment camp consists of the CDC, insurance companies, and most infection disease doctors, who state that Lyme disease is easily detectable with the two tests they recognize and that all the other diagnostic tools out there, or different interpretations of the two recognized tests, are flawed. That patients who do not show as 'positive' on their tests do not have Lyme, but are suffering from something else and should not be treated like they have Lyme.
The other camp of doctors and patients claim that there are multiple strains of Lyme that will not test positive with the narrow definition proclaimed by The Establishment. These doctors, many of whom become members of the International Lyme and Associated Disease Society (ILADS), stand by more comprehensive testing and a less rigid interpretation of Western Blot and ELISA test results. Most of the people who end up as their patients have been bounced around from doctor to doctor, diagnosed with all sorts of chronic syndromes and diseases that have to be suffered through but that cannot be cured. Once these patients end up with an ILADS provider, they are examined for THEIR SYMPTOMS first and are given the standard AND more comprehensive tests to CONFIRM a diagnosis of Lyme or related infection. If this (non-Establishment-based) diagnosis holds up, these patients are treated intensively for an infection that they probably have lived with for years and years. Many to most of these patients GET BETTER with this treatment. Very few suffer lasting side effects from the treatment they are given.
I am not one of those patients, being treated by an ILADS provider using strong doses of antibiotics and supporting supplements to attempt to drive an infection from my body. I received fair warning that there may be uncomfortable side effects during treatment. The antibiotics may make me nauseous, headachey, or give me diarrhea for one. Once the antibiotics start working, the die off of the organisms will release their toxins into my system en masse. So, it is likely that I will feel worse before I see any benefit to the treatment. As rotten as I've been feeling, it is worth the downside to me. Primarily, I want to stop the progression of what has been happening to my body. The last year in particular has been extremely tough. I have even toyed with the idea of going on full disability, which I really can't afford to do.
I took my first dose of mega antibiotics last night with dinner. I haven't been hungry enough today to eat enough food to take my next dose. Hopefully, I can do that soon. Also, I hope to check in hear at least weekly to document the progress of the treatment. If anyone is still checking in here, wish me luck.
Saturday, July 28, 2012
Best Buy's awful customer service
Yesterday I joined the cast of "Lost", that is lost in the phone system of Best Buy customer service.
Last weekend I placed an order for a $300 camera. I realized after the fact that I probably should have picked up one of their extended warranties. Without one, I will undoubtedly drop the camera on the pavement or accident scratch the lens. I looked around online to see if there was a way to order the protection, after having received the merchandise; the camera arrived on Thursday. When I couldn't find a way, I used an email link to ask customer support about picking up the protection. They emailed me back that I had to call customer support to do any post-delivery order modifications.
The call experience did not go well. After more than 12 minutes in the phone system, only about half of which was spent talking to a somewhat baffled customer service agent, I was supposedly transferred to the '.com' area. After about a minute 'on hold' the music stopped playing, but the line did not disconnect. Four minutes after the music stopped, I gave up and called back. Explaining the situation to a young man who got on the line after only about 30 seconds, I was transferred to the ".com" area as requested. Unfortunately, the young woman who picked up the phone less than a minute later couldn't help me. She said she needed to transfer me over the Geek Squad people. I told her that they were the ones who sent me over to the online orders department, since they could not see my order in their system. She kept me on hold for THIRTY FIVE minutes while she attempted to achieve a consensus with the Geek Squad. In the end, she told me that I have to go to a Best Buy store to take care of my request!
Fortunately for Best Buy, I was already planning to visit the store on the way home to pick out a new camera sleeve. My last camera was a Cannon ELPH. The new one was Power Shot. ELPH's are extremely small. Power Shots still qualify as 'pocket' cameras, but just barely, so none of my ELPH sleeves were large enough to properly hold and protect the new camera.
When I presented the situation to the customer service personnel at the Best Buy store, they were quickly able to pull up my order records. Unfortunately, they could only sell me the extended warranty based on the price of the camera in the store. (The online price was $50 less.) I explained to the clerk about the horrible phone experience, saying that I probably deserved at least a year's worth of extended protection for the investment of my time on the phone. She totally sympathized with me, so she asked a colleague if they could somehow sell me the warranty based on the lower base price of the camera. He said that there wasn't a way to override the price of a warranty in their system. I really wanted the warranty, so I paid the extra seven dollars for the in store 2 year extended warranty.
This investment of time and money will probably guarantee that nothing goes wrong with the camera, for at least two years then all bets are off.
This experience has me severely jaded against Best Buy. In summary, their online support told me to go to their phone support. Their phone support ultimately had me go to a store. Their store charged me more for the product I was trying to purchase. If it weren't for the lack of brick-and-mortar options and the fact that their prices are pretty good, I would probably stop shopping there.
Update: Best Buy sent me a survey about my telephone customer service experience. ROTFL. Both barrels.
Another Update: Best Buy actually read my feedback and had someone from their customer retention program contact me. They basically credited me about $40 to my Rewards program to make up for the time and aggravation in the situation. Not too shabby.
Last weekend I placed an order for a $300 camera. I realized after the fact that I probably should have picked up one of their extended warranties. Without one, I will undoubtedly drop the camera on the pavement or accident scratch the lens. I looked around online to see if there was a way to order the protection, after having received the merchandise; the camera arrived on Thursday. When I couldn't find a way, I used an email link to ask customer support about picking up the protection. They emailed me back that I had to call customer support to do any post-delivery order modifications.
The call experience did not go well. After more than 12 minutes in the phone system, only about half of which was spent talking to a somewhat baffled customer service agent, I was supposedly transferred to the '.com' area. After about a minute 'on hold' the music stopped playing, but the line did not disconnect. Four minutes after the music stopped, I gave up and called back. Explaining the situation to a young man who got on the line after only about 30 seconds, I was transferred to the ".com" area as requested. Unfortunately, the young woman who picked up the phone less than a minute later couldn't help me. She said she needed to transfer me over the Geek Squad people. I told her that they were the ones who sent me over to the online orders department, since they could not see my order in their system. She kept me on hold for THIRTY FIVE minutes while she attempted to achieve a consensus with the Geek Squad. In the end, she told me that I have to go to a Best Buy store to take care of my request!
Fortunately for Best Buy, I was already planning to visit the store on the way home to pick out a new camera sleeve. My last camera was a Cannon ELPH. The new one was Power Shot. ELPH's are extremely small. Power Shots still qualify as 'pocket' cameras, but just barely, so none of my ELPH sleeves were large enough to properly hold and protect the new camera.
When I presented the situation to the customer service personnel at the Best Buy store, they were quickly able to pull up my order records. Unfortunately, they could only sell me the extended warranty based on the price of the camera in the store. (The online price was $50 less.) I explained to the clerk about the horrible phone experience, saying that I probably deserved at least a year's worth of extended protection for the investment of my time on the phone. She totally sympathized with me, so she asked a colleague if they could somehow sell me the warranty based on the lower base price of the camera. He said that there wasn't a way to override the price of a warranty in their system. I really wanted the warranty, so I paid the extra seven dollars for the in store 2 year extended warranty.
This investment of time and money will probably guarantee that nothing goes wrong with the camera, for at least two years then all bets are off.
This experience has me severely jaded against Best Buy. In summary, their online support told me to go to their phone support. Their phone support ultimately had me go to a store. Their store charged me more for the product I was trying to purchase. If it weren't for the lack of brick-and-mortar options and the fact that their prices are pretty good, I would probably stop shopping there.
Update: Best Buy sent me a survey about my telephone customer service experience. ROTFL. Both barrels.
Another Update: Best Buy actually read my feedback and had someone from their customer retention program contact me. They basically credited me about $40 to my Rewards program to make up for the time and aggravation in the situation. Not too shabby.
Tuesday, July 24, 2012
Taxi Driver
I was traveling this weekend, so I decided to watch "Taxi Driver" on my iPad during the flights. I finished the very last third at home.
I can see why this film received so much critical aclaim as a 'film'. However, I do not think that I would ever recommend the movie for purely entertainment purposes. The cinematography utilized some innovative elements. And, DeNiro's portrayal of Travis was intense, for sure. Overall though, this film seemed to be about a truly disturbed individual who harbored some very extreme views on the state of society and what was necessary to improve things. I'm not sure why Jodie Foster's portrayal of Iris received so much note. She did an o.k. Job of it, but I don't think that the role was that demanding except perhaps for her reactions to the final violent confrontation scene near the end of the story.
Ultimately, unless you envision yourself asma student of 'the art of film' I see no reason to watch this endeavor.
I can see why this film received so much critical aclaim as a 'film'. However, I do not think that I would ever recommend the movie for purely entertainment purposes. The cinematography utilized some innovative elements. And, DeNiro's portrayal of Travis was intense, for sure. Overall though, this film seemed to be about a truly disturbed individual who harbored some very extreme views on the state of society and what was necessary to improve things. I'm not sure why Jodie Foster's portrayal of Iris received so much note. She did an o.k. Job of it, but I don't think that the role was that demanding except perhaps for her reactions to the final violent confrontation scene near the end of the story.
Ultimately, unless you envision yourself asma student of 'the art of film' I see no reason to watch this endeavor.
Monday, July 16, 2012
Becoming classically well-viewed
There are dozens of 'classic' movies that I have never seen. I have decided to challenge myself to correct this great deficit in my education. Every week, unless I am traveling, I will try to watch one of those many 'classic' movies. The definition of 'classic' shall include the American Film Institute's top 100 fils of all time, any Oscar nominated film that suits my fancy, and films listed in he appendix of the book The Film Club.
The first film to be digested, appreciated, and checked off the list is "Lawrence of Arabia". I was inspired to watch this one since it was an obsession of the android character in the recent movie, "Prometheus".
I will not even try to review this, or any of these films. They are after all 'classics', so there are countless reviews, summaries, and odes to these works. However, I now understand why "Lawrence of Arabia" is hailed as a 'classic'. Not only is the film full of grade A actors, giving grade a performances, but the cinematography, costumes, and score were also all wonderous. I'm definitely lookingforward to my next adventure.
The first film to be digested, appreciated, and checked off the list is "Lawrence of Arabia". I was inspired to watch this one since it was an obsession of the android character in the recent movie, "Prometheus".
I will not even try to review this, or any of these films. They are after all 'classics', so there are countless reviews, summaries, and odes to these works. However, I now understand why "Lawrence of Arabia" is hailed as a 'classic'. Not only is the film full of grade A actors, giving grade a performances, but the cinematography, costumes, and score were also all wonderous. I'm definitely lookingforward to my next adventure.
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