It's interesting. At some level, I sort of find myself running out of things to talk about that I feel are as inspirational or poignant as the things I have written about in the past. I've written about all the BS treatments we have tried, all the support we have and how thankful I am. I've written about some harder things and some softer things, but its almost like I feel a need to bring my A game to every blog because of the positive feedback that I have gotten from so many people in so many forms. How do you follow up a blog about your kid crying in her mom's arms for reasons that nobody can understand based on any cosmic fairness test you would care to apply?
Well, obviously, I need to re-set my thinking. This blog, as much as it is there to help anyone going through this or a similar situation or give some insight into what we are doing/going through on a week to week basis to those who care, it is also there to help me get some level of catharsis.
Maybe this is selfish to say, but I can't put that kind of pressure on myself. That's not to say that I won't continue to push myself to the limits of my personal boundaries with regard to what I write. This would not be cathartic to me if I didn't, but for some reason, I have been kicking around this idea in my head that I need to strum the heart strings even harder to elicit the response I need both internally and externally. Sort of like a drug I suppose. Maybe more like the way shocking things, painful things, hard-core things or un-natural things tend to lose their edge over time and not shock, hurt or feel weird after a while. I'm sure there's a clinical word for it, but I can't think of what it is right now. Sensory exhaustion or something like that.
So, we have talked about our life situation and a common question is "how are we going to do this?" My answer is usually "I don't know...but only one day at at time, that's for sure." I guess that's how I will be approaching this blog going forward. I have written all I care to about the history of where we have been with this dispicable disease. My open letter to Mindy Goodin closed that chapter for me.
If we hear of things that might be relevant or interesting to the ALS community, I will post them here, because I know there are many people that read this that are "in it" with us at the hardest levels. H told me yesterday about someone that was posting positive response to some stem cell treatments they received in Mexico, so I'll find out more about that and post it here soon. I'll say that initially we are skeptical and try to be cautious with our expectations.
To our friends who call and leave voice mails. If we don't call back, it's not because we don't love you. Heidi can't dial and I don't seem to have much time for even those things which I should make time for, including calling you back. It is not intentional. Heidi's energy and my time have to pretty much collide in a perfect storm to be able to return phone calls. I get to the end of the day and can't believe that the day is over. Its like when I get a breather, everyone else is mostly asleep. Like now.
A snapshot: I spend my days first taking care of the kids and H, then taking care of H then business, then taking care of business and H and maybe getting an workout in, then taking care of the kids, dinner, business, H, dishes, etc. Then chilling a bit w/ the family then taking care of the kids and H getting to bed.
Friends of H's come in a couple times a week for anywhere from a couple to several hours so I can get out and meet up with business associates, etc. We have friends bringing in meals three times a week, which is awesome and generally sustains us w/ leftovers.
I'm glad the "routine" is coming back after a solid three weeks of spring break type things. K and A, Heidi is happier when you are around. That is for sure. I know I say thank you all the time, but when you are gone, things are definitely harder around here and not just from a physical perspective.
I'll say I did take pride in cooking an Easter prime rib roast w/ veggies and it was awesome. I like to cook and really enjoy it when I have time. It's a good distraction that one can take some pride in when everyone likes it. Even though it came together at the last minute, Robert (my stepbrother) and his kids came over and we had a great Easter meal.
Heidi had some friends over for a movie yesterday and I'll say that she had a great time. Girls, that might be a thing to do once a month or so. I didn't mean to insult anyone when I mentioned that I had to exit the estrogen fest, but I'm fairly sure it was taken in good humor. There's only so much a man can take, honestly. Hanging out discussing whether the actor in Twilight wore too much lipstick is out of my realm of feasible argument. Picture yourselves discussing whether circle hooks or J hooks are better, the nuances of river fishing with dry flies or offshore trolling and how the cycles of the moon affect them or perhaps the never ending and almost pointless argument over which fly you would have with you if you only could have one. You get the idea.
You would have said something similar, but probably more eloquent as you moved towards the door.
Peace,
B.
Tuesday, April 14, 2009
Thursday, April 9, 2009
Irony and the "Bullet in the Bible"
Some images are tough. Seeing my 7 year old weeping in H's lap tonight was tough. Seeing H ask her to lift her arm over her to hold her was even harder. Not being able to hold your child is well...just unfathomable, which is what this disease pretty much is.
My 9 year old switched places w/ her (from me) and had her turn as well. Sometimes I think it's OK to just kind of let that happen. Not try to distract them with TV or even really discuss the 'elephant in the room'. Just let it flow for a while, burn through some tissues and try and get it out of the system.
When my 11 year old got home from soccer, seeing everyone is a sad state of affairs offered to turn on "Survivor" as a distraction because they all like it. Well, of course this was not the best suggestion in the world, unbeknown, of course to her and created another round of wailing. Irony has its way of making itself known to us every day in some way.
Changing subjects...
So, two disparate works of art collided for me this week. Recently H and I watched Band of Brothers, the HBO series, which is an incredibly well told tale of the Easy Company in the 101st Airborne and their journey from Basic Training through WW II. If you have not seen it, I highly recommend it. Amazing story and a great reminder of the fact that personal stories are attached to each experience in war, disease or other difficult circumstances that are happening on a large, even global scale. When we learn history about WWII, generally we learn about this or that battle, how many soldiers were killed on either side and who won and who lost, what tactics they used, etc.
Disease is very similar, we tend to view it on a global scale, detached, somewhat horrified, somewhat saddened; that is until it sits in our homes or stares at us in the mirror. I've said this before, pain is personal, and it's real and it sucks. J-bean asked me tonight "Dad, is this just some nightmare we are going to wake up from?"
I wish it was my little friend. I wish it was. The only reason I guess I really know it isn't is because there is so much love in it. I've never had a nightmare with love, much less this much.
The artistic collision happened when I watched "Bullet in a Bible," which is the name of the video production of the Green Day concert I previously mentioned from their tour that was mostly filmed at an outdoor arena in England over two days which was attended by something like 135,000 people. For those of you not familiar, Green Day is sort of a "new" punk band (as punk rock bands go) that has actually been around for about 15 years. Maybe they are the oldest of the new punk bands.
I, knowing something but not much of Green Day, assumed that "Bullet in a Bible" was some sort of flippant commentary in an anti-religious tirade baked into one of their lyrics. I was wrong. In a clip on the vid, the band makes a tour of some eloquently named War museum in England and in this museum, there was actually a Bible with a bullet in it that they viewed and later showed on the video. It looked like the bullet had made its way about 3/4 of the way through the Bible and likely saved the life of the person carrying it for at least a moment.
When I heard Green Day and "Bullet in a Bible" in the same sentence, I was a bit appalled to be honest. I assumed something sinister at it's worst and ironic at it's best. It turned out to be ironic in a way that I didn't expect, which actually was artistically thought provoking and kind of well blended. They had Bible's with shrapnel in them too at the museum, but "Shrapnel in a Bible" just isn't quite as hard-hitting, though I'm sure the carrier was equally thankful.
So, I guess I'm reminded by this that you can't really read too much into things that you don't really know about.
OK, enough of that. Had to change the subject though, from where I started. I have to sleep tonight.
Thanks for reading.
B.
My 9 year old switched places w/ her (from me) and had her turn as well. Sometimes I think it's OK to just kind of let that happen. Not try to distract them with TV or even really discuss the 'elephant in the room'. Just let it flow for a while, burn through some tissues and try and get it out of the system.
When my 11 year old got home from soccer, seeing everyone is a sad state of affairs offered to turn on "Survivor" as a distraction because they all like it. Well, of course this was not the best suggestion in the world, unbeknown, of course to her and created another round of wailing. Irony has its way of making itself known to us every day in some way.
Changing subjects...
So, two disparate works of art collided for me this week. Recently H and I watched Band of Brothers, the HBO series, which is an incredibly well told tale of the Easy Company in the 101st Airborne and their journey from Basic Training through WW II. If you have not seen it, I highly recommend it. Amazing story and a great reminder of the fact that personal stories are attached to each experience in war, disease or other difficult circumstances that are happening on a large, even global scale. When we learn history about WWII, generally we learn about this or that battle, how many soldiers were killed on either side and who won and who lost, what tactics they used, etc.
Disease is very similar, we tend to view it on a global scale, detached, somewhat horrified, somewhat saddened; that is until it sits in our homes or stares at us in the mirror. I've said this before, pain is personal, and it's real and it sucks. J-bean asked me tonight "Dad, is this just some nightmare we are going to wake up from?"
I wish it was my little friend. I wish it was. The only reason I guess I really know it isn't is because there is so much love in it. I've never had a nightmare with love, much less this much.
The artistic collision happened when I watched "Bullet in a Bible," which is the name of the video production of the Green Day concert I previously mentioned from their tour that was mostly filmed at an outdoor arena in England over two days which was attended by something like 135,000 people. For those of you not familiar, Green Day is sort of a "new" punk band (as punk rock bands go) that has actually been around for about 15 years. Maybe they are the oldest of the new punk bands.
I, knowing something but not much of Green Day, assumed that "Bullet in a Bible" was some sort of flippant commentary in an anti-religious tirade baked into one of their lyrics. I was wrong. In a clip on the vid, the band makes a tour of some eloquently named War museum in England and in this museum, there was actually a Bible with a bullet in it that they viewed and later showed on the video. It looked like the bullet had made its way about 3/4 of the way through the Bible and likely saved the life of the person carrying it for at least a moment.
When I heard Green Day and "Bullet in a Bible" in the same sentence, I was a bit appalled to be honest. I assumed something sinister at it's worst and ironic at it's best. It turned out to be ironic in a way that I didn't expect, which actually was artistically thought provoking and kind of well blended. They had Bible's with shrapnel in them too at the museum, but "Shrapnel in a Bible" just isn't quite as hard-hitting, though I'm sure the carrier was equally thankful.
So, I guess I'm reminded by this that you can't really read too much into things that you don't really know about.
OK, enough of that. Had to change the subject though, from where I started. I have to sleep tonight.
Thanks for reading.
B.
Monday, April 6, 2009
Thank you.
As Usual,
The team is coming through. Just a sample of the support we have...
Lots of FB comments and emails about my post regarding Mindy and her clinic. All positive, all keeping me hopeful that A: she'll feel it, B she'll answer my questions, C: She will not rape people who are desperate. I don't know if that is what she is doing, but I will feel like it until proven otherwise. I continue to weigh my options in this regard. Several people have offered to help from a legal perspective. Right now, I don't have the energy to pursue it. That doesn't mean I won't.
Good:
Great Dinners! OMG. Our neighbors and friends are so awesome. Curry, Coconut shrimp, Fried Chicken, Chocolate mousse, Teriyaki chicken, stew, salads.... YUM. Thank you so much. Love you guys and everyone that keeps this food coming. It rocks so hard that I almost can't take it. I have to run miles and miles just to exhaust the calories and the feelings that it churns up. I honestly am in awe of all of you. I know too that you think it is the least that you can do, which is so not true. I think it is the most.
Good:
Buddies for movies. So a couple of my buddies from across the pond keep turning me on to these awesome British gangster movies. They are ridiculous, violent and darkly humorous, but hey, it's a good distraction. Layer Cake, Lock Stock and Two Smokin' Barrels and Snatch, so far. Madonna's EX Guy Ritchy seems like the genius behind them. Classic bad (good) films. Not exactly the Shawshank Redemption, but entertaining none the less.
Good: Green Day. Their concert on Palladia made me churn the ELIP faster than ever, 7.2 mph pace for 35 mins on level 11. Maybe that's not exactly rock star speed for elite athletes, but I have not been one of those for about 15 years. Man, those dudes rock. Also saw Kid Rock's "Storytellers." I've seen the Kid in concert once and he does not disappoint. The dude can hit it. Storytellers is not long enough or set up in a true concert setting, but it's cool to hear the artists' rap on their own stuff and their influences. Highly recommend.
Good:
Planning a trip to Mexico to go fishing with some buddies. Clear my head, feed my soul, and give me strength to carry on. Recharge the batteries so to speak. Sometimes I feel SO drained. I will spend a week thinking about the best rigs to catch marlin, tuna, wahoo and pargo. I will think whether or not my three sevens will beat whatever my buddy is bidding $20 on. I will wonder whether i'm going to drink Pacifico or Corona, and I will think about "the little picture." I can't escape the big picture. I have never been able to do that, but I can try to do a little focusing on the little picture for a week in early June. I thank everyone that is helping make that happen in advance for that, and for those of you that are going.
Good:
Songs are forming in my head. I'll need a musician to help me actually make them songs, but so far I think the lyrics are powerful. I have not written them down yet. Some of it leans dark, some of it not. I'm not ready to write more about that yet.
Good:
I got to share a half a chapter or so of my book with a friend this week that was relevant to him in a business setting. He sent me a note that he was ROTFL. Which is a good sign. Sometimes I have no idea how my writing affects people, but I did think that story was pretty funny too. In retrospect, of course. That stuff 'ain't funny when you are going through it.
Good:
Never thought I'd say this but: Spring break is over. Kids are back in school, Friends that help are coming back to town and I don't have to worry about entertaining the kids for 7 hours on top of everything else going on. I USED to LOVE spring break. Hmm...what is the summer going to be like. Starting to fill it up NOW!
Peace,
B.
The team is coming through. Just a sample of the support we have...
Lots of FB comments and emails about my post regarding Mindy and her clinic. All positive, all keeping me hopeful that A: she'll feel it, B she'll answer my questions, C: She will not rape people who are desperate. I don't know if that is what she is doing, but I will feel like it until proven otherwise. I continue to weigh my options in this regard. Several people have offered to help from a legal perspective. Right now, I don't have the energy to pursue it. That doesn't mean I won't.
Good:
Great Dinners! OMG. Our neighbors and friends are so awesome. Curry, Coconut shrimp, Fried Chicken, Chocolate mousse, Teriyaki chicken, stew, salads.... YUM. Thank you so much. Love you guys and everyone that keeps this food coming. It rocks so hard that I almost can't take it. I have to run miles and miles just to exhaust the calories and the feelings that it churns up. I honestly am in awe of all of you. I know too that you think it is the least that you can do, which is so not true. I think it is the most.
Good:
Buddies for movies. So a couple of my buddies from across the pond keep turning me on to these awesome British gangster movies. They are ridiculous, violent and darkly humorous, but hey, it's a good distraction. Layer Cake, Lock Stock and Two Smokin' Barrels and Snatch, so far. Madonna's EX Guy Ritchy seems like the genius behind them. Classic bad (good) films. Not exactly the Shawshank Redemption, but entertaining none the less.
Good: Green Day. Their concert on Palladia made me churn the ELIP faster than ever, 7.2 mph pace for 35 mins on level 11. Maybe that's not exactly rock star speed for elite athletes, but I have not been one of those for about 15 years. Man, those dudes rock. Also saw Kid Rock's "Storytellers." I've seen the Kid in concert once and he does not disappoint. The dude can hit it. Storytellers is not long enough or set up in a true concert setting, but it's cool to hear the artists' rap on their own stuff and their influences. Highly recommend.
Good:
Planning a trip to Mexico to go fishing with some buddies. Clear my head, feed my soul, and give me strength to carry on. Recharge the batteries so to speak. Sometimes I feel SO drained. I will spend a week thinking about the best rigs to catch marlin, tuna, wahoo and pargo. I will think whether or not my three sevens will beat whatever my buddy is bidding $20 on. I will wonder whether i'm going to drink Pacifico or Corona, and I will think about "the little picture." I can't escape the big picture. I have never been able to do that, but I can try to do a little focusing on the little picture for a week in early June. I thank everyone that is helping make that happen in advance for that, and for those of you that are going.
Good:
Songs are forming in my head. I'll need a musician to help me actually make them songs, but so far I think the lyrics are powerful. I have not written them down yet. Some of it leans dark, some of it not. I'm not ready to write more about that yet.
Good:
I got to share a half a chapter or so of my book with a friend this week that was relevant to him in a business setting. He sent me a note that he was ROTFL. Which is a good sign. Sometimes I have no idea how my writing affects people, but I did think that story was pretty funny too. In retrospect, of course. That stuff 'ain't funny when you are going through it.
Good:
Never thought I'd say this but: Spring break is over. Kids are back in school, Friends that help are coming back to town and I don't have to worry about entertaining the kids for 7 hours on top of everything else going on. I USED to LOVE spring break. Hmm...what is the summer going to be like. Starting to fill it up NOW!
Peace,
B.
Friday, March 27, 2009
OK, this one a long time coming...Mindy...Why?
So, I've said many times that I want to save people that are going through this some headache, heartache and potentially some money. I have had a long time to think about this post. I have hesitated, because generally, I try to stay positive in my posts here, but I felt like our experience with Mindy Goodin at Creek Trail Medical Clinic in Colorado Springs, CO was worthy of a post. I wrote this post several days ago. Since then I've considered many things, but at the end of the day, my beef is justified. My questions are logical and my motivation is not coming from a place of anger. Mostly i'm mystified and confused. I'm also disappointed, and you will see why below.
I've also trusted this post, in advance, to people in the ALS community that I have met through my outspokeness about these issues and the resounding message was essentially that I "have" to post this, for the benefit of others. So know that I don't do this out of anger or personal rage, but out of hope for answers and hope for perspective, both for us and for others who may have had the same, similar or might have the same experiences.
I'll write this as an open letter in order to give her an opportunity to respond publicly. I imagine that eventually, someone will make her aware of this post. I will try to state the facts as I know them. If anyone has a great success story from their treatment from Mindy, please feel free to post it here as well. I'm asking questions that I feel need to be asked, and I feel that the public should be aware of our experience.
Dear Mindy,
We were desperate to find someone who would listen to our suspicions about Lyme disease. We had tested positive for a few "titers" and a few co-infections for the disease. As it turns out, these labs are famous for positive results. Lyme disease sucks worse than most diseases, but it represents hope, believe it or not, for people that have been diagnosed with ALS. You gave us hope. You "believed" that H had Lyme disease and some co-infections and you were willing to treat it.
You had worked with Dr. Martz, who "cured" himself of ALS by treating Lyme disease. He retired and you opened your clinic. You are a PA, who practices your medicine under an MD, who we never met and who probably rarely comes into the office. He's doing "research" on this, right? What's his name? Dr. Harvey? Never met him. Do PA's generally get $700 for an initial session and $225 an hour? I don't know. Seems a bit pricey to me. My work generally saves companies millions of dollars and I bill my services directly at $200/hr. But then again, what price can you put on "potentially" saving someone's life?
Well, H went under minor surgery at your recommendation to get a Groshong Catheter so she we could "easily" administer IV antibiotics here at our home. We bought literally thousands of dollars of antibiotics and other medications from the pharmacy you recommended that is right next door to your office because "you are comfortable with them and they know how you want the meds prepared." We took them "religiously" for about 6 months.
We were stuck in our house for hours every day waiting for the drips to go into H's veins. When we started, H could walk a bit. When we finished she couldn't. Open meds required refrigeration, sanitary conditions were paramount. We adopted out (gave up) our cats. We could have gone on trips. I feel like we wasted a whole summer, and being honest, I'm angry about that because time is our only valuable commodity now.
Why did your main practicing nurse quit the week after she trained us on how to service the IV's? She was really nice, I liked her. She's really the reason that I advocated us going on your plan in the first place. It's not like you came across as the warmest person in the world at our first meeting. She was the one we bought in to, not you. So, why did she leave? I was wondering about that. Probably a good reason, but I'm curious. Maybe she'll find this and post. Penny, right?
All the time, H is in decline. Who knows..maybe it's slower than it would have been had she not been on the antibiotics. Who knows really? Isn't that convenient for you?
The emotional toll is enormous, so she goes on anti-depressants, two of them to be exact. Both of the labels say "do not discontinue this medication without Dr. supervision." or something close to that. You are perscribing these drugs. They are nothing to play around with, right?
A couple of months later, H has a breakdown and we come see you for an emergency consultation which you make time for, on a non-office hours day. Practically an intervention. Doses of drugs are increased. Tolerance is assessed. Tears are shed. I lay my heart out on the table and you pick it up and show it to H as a reason why she should not take herself out of the game. Figuratively of course, but this was the essence of the meeting. I've been through some serious shit in my life, this was about as serious as it gets.
Did you use me to keep a paying patient? (That's how I feel today)
About a month later we express some question regarding a "pulsing" strategy that some recommend with regard to long term antibiotic therapy to treat chronic lyme or other co-infections. H is on, I think 5 of them altogether. 3 of them IV and most days 3 hours spaced out over the day. Side effects can be adding up...we don't know really, but H is not feeling good, and definitely not feeling better.
We call to talk about this pulsing idea, and you tell H "You need to pick a pew and sit in it." Apparently you don't like anyone else's ideas about treatments. hmmm..pick a pew, like in a church? Are you God? We take a seat back in your pew for a while...
Later, H calls to tell you that we want to take a break from the antibiotics. It is a gut wrenching decision, but it is hard to do this every day, it is expensive and it does not seem to be working. Your assistant takes the call. You never call us back. Not once. To be clear, H didn't say quit, she didn't say we didn't believe in what you were doing and perscribing, she said "break." If you were not clear on that point, you would have been clear on that if you had bothered to call.
The next day or two an antidepressant is running out and we call to re-fill. You have already instructed the pharmacy to discontinue ALL prescriptions for H. ALL of them.
You know how depressed H is. You know that stopping anti depressant medication immediately can cause massive harm and suicidal tendencies. You did it anyhow. Were you mad at us? Were you disappointed? You already knew she was on the edge when she was ON the medication. What did you think would happen? After six months and all we went through with you did you care at all?
I am open to your response to any and all of the above questions. You probably have my number in your files. If you don't then that is also negligent.
You deal in human life every day. We deal with it in the context of our family. I don't want to be another number to you or a + sign in your ledger without regard to our reality. This is what disturbs me. You never called. It seems like you never cared, or really had any hope. I am very well aware of this, acutely aware of it, one might say. I don't fear the truth. In fact, I fear nothing.
Here's an example of justice:
http://blog.nj.com/ledgerupdates/2007/09/nj_doctor_draws_prison_term_in.html
57 months will give that person some time to think about it.
This is your chance, before I get really mad.
Thank you,
Bill
I've also trusted this post, in advance, to people in the ALS community that I have met through my outspokeness about these issues and the resounding message was essentially that I "have" to post this, for the benefit of others. So know that I don't do this out of anger or personal rage, but out of hope for answers and hope for perspective, both for us and for others who may have had the same, similar or might have the same experiences.
I'll write this as an open letter in order to give her an opportunity to respond publicly. I imagine that eventually, someone will make her aware of this post. I will try to state the facts as I know them. If anyone has a great success story from their treatment from Mindy, please feel free to post it here as well. I'm asking questions that I feel need to be asked, and I feel that the public should be aware of our experience.
Dear Mindy,
We were desperate to find someone who would listen to our suspicions about Lyme disease. We had tested positive for a few "titers" and a few co-infections for the disease. As it turns out, these labs are famous for positive results. Lyme disease sucks worse than most diseases, but it represents hope, believe it or not, for people that have been diagnosed with ALS. You gave us hope. You "believed" that H had Lyme disease and some co-infections and you were willing to treat it.
You had worked with Dr. Martz, who "cured" himself of ALS by treating Lyme disease. He retired and you opened your clinic. You are a PA, who practices your medicine under an MD, who we never met and who probably rarely comes into the office. He's doing "research" on this, right? What's his name? Dr. Harvey? Never met him. Do PA's generally get $700 for an initial session and $225 an hour? I don't know. Seems a bit pricey to me. My work generally saves companies millions of dollars and I bill my services directly at $200/hr. But then again, what price can you put on "potentially" saving someone's life?
Well, H went under minor surgery at your recommendation to get a Groshong Catheter so she we could "easily" administer IV antibiotics here at our home. We bought literally thousands of dollars of antibiotics and other medications from the pharmacy you recommended that is right next door to your office because "you are comfortable with them and they know how you want the meds prepared." We took them "religiously" for about 6 months.
We were stuck in our house for hours every day waiting for the drips to go into H's veins. When we started, H could walk a bit. When we finished she couldn't. Open meds required refrigeration, sanitary conditions were paramount. We adopted out (gave up) our cats. We could have gone on trips. I feel like we wasted a whole summer, and being honest, I'm angry about that because time is our only valuable commodity now.
Why did your main practicing nurse quit the week after she trained us on how to service the IV's? She was really nice, I liked her. She's really the reason that I advocated us going on your plan in the first place. It's not like you came across as the warmest person in the world at our first meeting. She was the one we bought in to, not you. So, why did she leave? I was wondering about that. Probably a good reason, but I'm curious. Maybe she'll find this and post. Penny, right?
All the time, H is in decline. Who knows..maybe it's slower than it would have been had she not been on the antibiotics. Who knows really? Isn't that convenient for you?
The emotional toll is enormous, so she goes on anti-depressants, two of them to be exact. Both of the labels say "do not discontinue this medication without Dr. supervision." or something close to that. You are perscribing these drugs. They are nothing to play around with, right?
A couple of months later, H has a breakdown and we come see you for an emergency consultation which you make time for, on a non-office hours day. Practically an intervention. Doses of drugs are increased. Tolerance is assessed. Tears are shed. I lay my heart out on the table and you pick it up and show it to H as a reason why she should not take herself out of the game. Figuratively of course, but this was the essence of the meeting. I've been through some serious shit in my life, this was about as serious as it gets.
Did you use me to keep a paying patient? (That's how I feel today)
About a month later we express some question regarding a "pulsing" strategy that some recommend with regard to long term antibiotic therapy to treat chronic lyme or other co-infections. H is on, I think 5 of them altogether. 3 of them IV and most days 3 hours spaced out over the day. Side effects can be adding up...we don't know really, but H is not feeling good, and definitely not feeling better.
We call to talk about this pulsing idea, and you tell H "You need to pick a pew and sit in it." Apparently you don't like anyone else's ideas about treatments. hmmm..pick a pew, like in a church? Are you God? We take a seat back in your pew for a while...
Later, H calls to tell you that we want to take a break from the antibiotics. It is a gut wrenching decision, but it is hard to do this every day, it is expensive and it does not seem to be working. Your assistant takes the call. You never call us back. Not once. To be clear, H didn't say quit, she didn't say we didn't believe in what you were doing and perscribing, she said "break." If you were not clear on that point, you would have been clear on that if you had bothered to call.
The next day or two an antidepressant is running out and we call to re-fill. You have already instructed the pharmacy to discontinue ALL prescriptions for H. ALL of them.
You know how depressed H is. You know that stopping anti depressant medication immediately can cause massive harm and suicidal tendencies. You did it anyhow. Were you mad at us? Were you disappointed? You already knew she was on the edge when she was ON the medication. What did you think would happen? After six months and all we went through with you did you care at all?
I am open to your response to any and all of the above questions. You probably have my number in your files. If you don't then that is also negligent.
You deal in human life every day. We deal with it in the context of our family. I don't want to be another number to you or a + sign in your ledger without regard to our reality. This is what disturbs me. You never called. It seems like you never cared, or really had any hope. I am very well aware of this, acutely aware of it, one might say. I don't fear the truth. In fact, I fear nothing.
Here's an example of justice:
http://blog.nj.com/ledgerupdates/2007/09/nj_doctor_draws_prison_term_in.html
57 months will give that person some time to think about it.
This is your chance, before I get really mad.
Thank you,
Bill
Wednesday, March 25, 2009
Shawshank and Hope
So, after so many of my friends on FB and in general have picked The Shawshank Redemption as one of their favorite movies of all time, we decided to buy it on PPV last night. Wow, what a film. Raw and uncompromising in many areas and not an endorsement of the prison systems during the period. That being said, it is an amazing story, well written, well acted, directed and the cinematography was amazing. I have always liked Morgan Freeman and Tim Robbins as actors (though I wish Tim would shut up about his politics.) Both did a stellar job in this movie.
If you have not seen it, or have not seen it recently, obvoiusly highly recommend it.
What I took as the core message from the film was the theme of "hope." I won't ruin it for you, but essentially The TR character "Andy" believes in hope as his salvation and the MF character Red feels that Hope is something that is a killer in Prison, especially to lifers as both of them are.
Hope is something that in my opinion that you have to hold on to, no matter what "they" tell you. Life without hope really is not living, it's more like dieing. Your vision of hope can change. You can always hope for something else.
With ALS, it seems like the first thing the Neurologists try to do is take hope away. They are the MF character. Not antagonistic, often very kind, very "understanding." They don't "wish" this on you. But they don't offer hope either. The TR character Andy knows that deep within him, no matter what happens to him (and boy do some awful things happen to him) he knows that there is a place that they can't touch, and that is his hope.
So let's all try to not lose that!
Peace,
B.
If you have not seen it, or have not seen it recently, obvoiusly highly recommend it.
What I took as the core message from the film was the theme of "hope." I won't ruin it for you, but essentially The TR character "Andy" believes in hope as his salvation and the MF character Red feels that Hope is something that is a killer in Prison, especially to lifers as both of them are.
Hope is something that in my opinion that you have to hold on to, no matter what "they" tell you. Life without hope really is not living, it's more like dieing. Your vision of hope can change. You can always hope for something else.
With ALS, it seems like the first thing the Neurologists try to do is take hope away. They are the MF character. Not antagonistic, often very kind, very "understanding." They don't "wish" this on you. But they don't offer hope either. The TR character Andy knows that deep within him, no matter what happens to him (and boy do some awful things happen to him) he knows that there is a place that they can't touch, and that is his hope.
So let's all try to not lose that!
Peace,
B.
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