All,
We received a follow up call from the Mayo Clinic. The Western Blot test was Negative for Lyme, which is what we expected. This test looks for active antibodies in the blood fighting Lyme, and even then in only accruate about 50 - 60% of the time. Once you have "chronic lyme" it's a waste of time and money to do this test. Well, it's a waste of time and money to you. Not to the labs, etc. So, at least we help are helping cycle money into the economy. That makes me feel so much better.
Since more people follow this blog than the other, you should know that there's lots of new stuff on the ALS Chronicle blog at http://alschronicle.blogspot.com
Best,
Bill
Monday, January 26, 2009
Wednesday, January 14, 2009
Radisson Rochester Rocks
Just a quick note to acknowledge the housekeeping staff of the Radisson in Rochester. I left my Tag Heuer watch, which was a birthday gift from Heidi a couple of years ago, in the room when we checked out. I have this bad habit of taking it off when i am typing because it is the perectly wrong position on my wrist as I type on my current laptop. Tuesday afternoon, as I was busy trying to load a million things in the van and negotiate the cold weather, etc and I just completely forgot that I didn't have it on.
In any case, I called when we got home after I realized it was missing and when I finally reached housekeeping the next day, they had the watch, had logged it in and were waiting for someone to call and identify it. My hat is off to them, and specifically the person that cleaned our room, as I am sure they could have just denied finding it and had one very nice watch to go and pawn or something.
So, THANK YOU Radisson staff and I hope that people will find this blog and feel good about staying there as a result of it. I received my watch today via UPS in perfect condition.
Best,
Bill
In any case, I called when we got home after I realized it was missing and when I finally reached housekeeping the next day, they had the watch, had logged it in and were waiting for someone to call and identify it. My hat is off to them, and specifically the person that cleaned our room, as I am sure they could have just denied finding it and had one very nice watch to go and pawn or something.
So, THANK YOU Radisson staff and I hope that people will find this blog and feel good about staying there as a result of it. I received my watch today via UPS in perfect condition.
Best,
Bill
Friday, January 9, 2009
Closing Down Mecca
Hi Everybody, i've decided to close off this blog and start another that tells our story.
The mayo trip is over. To me, my last post ended it satisfactorily and the story I want to tell has to start at the beginning if it is to be of any real use to anyone.
As you probably know, this story is not, so far, a hollywood type of story. MayoMecca was a story of hope that did not end well. The next blog is a story of hope that is ongoing, but not going well. Right now, it is sort of like watching a train wreck in slow motion. Interesting, but not in a real "light vacation read" kinda way. I will not be offended if you want to call it "good" and be done with my musings.
The Mayo blog was to keep you informed, the next one, to be honest, is more of a vent for me. That being said, if you want to read, go for it: http://alschronicle.blogspot.com/
It's going to take me a while to get caught up. We have been through alot, and venting aside, my hope is that it will eventually help others by giving them our perspective on what we have been through.
I already posted "Chapter 1"
Peace out.
B.
The mayo trip is over. To me, my last post ended it satisfactorily and the story I want to tell has to start at the beginning if it is to be of any real use to anyone.
As you probably know, this story is not, so far, a hollywood type of story. MayoMecca was a story of hope that did not end well. The next blog is a story of hope that is ongoing, but not going well. Right now, it is sort of like watching a train wreck in slow motion. Interesting, but not in a real "light vacation read" kinda way. I will not be offended if you want to call it "good" and be done with my musings.
The Mayo blog was to keep you informed, the next one, to be honest, is more of a vent for me. That being said, if you want to read, go for it: http://alschronicle.blogspot.com/
It's going to take me a while to get caught up. We have been through alot, and venting aside, my hope is that it will eventually help others by giving them our perspective on what we have been through.
I already posted "Chapter 1"
Peace out.
B.
Wednesday, January 7, 2009
Details....brace yourself.
Catharsis: purification or purgation of the emotions, primarily through art b: a purification or purgation that brings about spiritual renewal or release from tension.
Some of you have expressed the hope that this blog would help me as a mechanism of release and the definition above is what I expect it to be. I'm not sure that it rises to the level of "art" in some great way, but a "release from tension" is already assured. In that regard, it will be revealing of a deeper side of myself than many of you probably know or expect. My hope is that some of what I write will help others avoid some of the expectations, false hope and expense of going through the journey that we have gone through. On the other hand, hope comes in many forms and a distraction from an unwanted 'reality' can sometimes be a good thing.
In that vein, I think perhaps I should close the "mayo mecca" blog and start a new one, as I did with the Hawaii blogs, because in a very real sense, I don't believe that the Mayo clinic is deserving of the ire that may spring forth in some of what I will likely write about... that is, two years of following one path down a rat hole then another with hope of a beneficial outcome. Then again, maybe I'll just keep this one going and let the chips fall where they may. (Counsel on this point, anyone?)
The Mayo clinic is a special place. Having now been there, there is no doubt about it. The way the Drs communicate with each other, the way that they have no fear to share information or the way that they put Ego aside in the best interest of the patient was self evident in the care that we received. The speed at which they work and collaborate is awesome, yet born of a necessity given that people come from far away to be there and see them.
We heard several first hand accounts of the "amazingness" of the place. That is why we went there. What we found is that the Mayo is probably the very best at practicing medicine that is approved by the FDA, is uncontroversial, probably highly technical and crosses multiple medical disciplines. If you want a heart transplant, liver transplant, cancer treatment or brain surgery, by all means, go to the Mayo Clinic. This is my fairly uneducated opinion.
On the other hand, If you have been diagnosed with a disease that is incurable, has non-specific origins, has not been through sufficient clinical trials and testing pointing to a treatment regimen and/or cure, then don't bother spending the time and money trying to find it there. They are extremely competent, but they are also extremely conservative. They are not going to "practice" anything on you that they don't think is going to cure or help you. They are not interested in ringing up massive unnecessary bills in the name of "Mayo is God" and nobody else's tests apply, as we had heard. Our Docs were perfectly willing to look at and heed not only the lab results but also the narritive write ups of the previousl MD's we have seen. Of course, maybe this is only truth as it relates to someone coming in with an ALS diagnosis. I can only speak from my experience.
I will say that one of the other Drs we saw said, "they will take your paperwork from previous MD's, say 'thanks' and then throw it in the trash." This did not happen in our case. Our primary Dr. undoubtedly spent hours going through our papers, lab reports, MD notes, personal notes and even research on the web to things we had brought up between our meeting with her on Monday and our meeting with her on Tuesday. She brought in the "Senior guy" dr. Kumar, but also consulted with Dr. Aksamit who has experience with Lyme, other ID's and ALS, and also boiled all of this down to her own organizational form for reference as we went through it on Tuesday. She wanted to help us, she felt some of our pain, she teared up when she told us what she believed was going on with Heidi. She was human first and Dr. second. I hope she stays that way. She was young (as senior residents at the Mayo go) I'm guessing mid thirties.
We did not get the news we wanted. In fact, we got the news that we feared. The Mayo Drs essentially said to us: "Heidi has ALS, and though we wish we could do something about it, we can't. It does not matter whether this was caused by, is related to, is in conjunction with or is preceeded by an infection or other condition of some sort (i.e. ectopic pregnancy, emergency surgery, blood transfusions, Lyme disease, Bartonella, Babesia, etc.) that the fact remains that everything points to ALS and there is not a cure, nor is there any real treatment that can change the progression or life expectancy of the patient or alter the course of the disease in any real way.
The options left to us, as far as they are concerned, are "managing the disease" so that minimal pain and suffering is endured by the patient (aka, Heidi, my wife.) In this regard, the Mayo Clinic, in all it's glory, offered us nothing more than anyone else, and that is hard to take. I really mean them no disrespect in saying that, because in our unbelieveable, unfair, unfortunate and completely uncomprehensible circumstance, no one on this planet seems to have an answer.
For our part, we have not given up. Is there a dent in our hope? For sure. You can't be on the receiving end of the discussion mentioned above and not feel deflated. We are still trying to get this IPLEX drug that we have mentioned before. We are still hopeful that someone will come up with something before it's too late. We have been on a seemingly endless quest for something, which as I mentioned before, has led us down many paths.
We are still hoping for a miracle, and maybe it is only after all other hope is lost that this can happen. This has occured to me as well. What would a miracle be if there were a reasonable scientific explanation for it? Not a miracle, that's for sure.
Peace,
B.
Some of you have expressed the hope that this blog would help me as a mechanism of release and the definition above is what I expect it to be. I'm not sure that it rises to the level of "art" in some great way, but a "release from tension" is already assured. In that regard, it will be revealing of a deeper side of myself than many of you probably know or expect. My hope is that some of what I write will help others avoid some of the expectations, false hope and expense of going through the journey that we have gone through. On the other hand, hope comes in many forms and a distraction from an unwanted 'reality' can sometimes be a good thing.
In that vein, I think perhaps I should close the "mayo mecca" blog and start a new one, as I did with the Hawaii blogs, because in a very real sense, I don't believe that the Mayo clinic is deserving of the ire that may spring forth in some of what I will likely write about... that is, two years of following one path down a rat hole then another with hope of a beneficial outcome. Then again, maybe I'll just keep this one going and let the chips fall where they may. (Counsel on this point, anyone?)
The Mayo clinic is a special place. Having now been there, there is no doubt about it. The way the Drs communicate with each other, the way that they have no fear to share information or the way that they put Ego aside in the best interest of the patient was self evident in the care that we received. The speed at which they work and collaborate is awesome, yet born of a necessity given that people come from far away to be there and see them.
We heard several first hand accounts of the "amazingness" of the place. That is why we went there. What we found is that the Mayo is probably the very best at practicing medicine that is approved by the FDA, is uncontroversial, probably highly technical and crosses multiple medical disciplines. If you want a heart transplant, liver transplant, cancer treatment or brain surgery, by all means, go to the Mayo Clinic. This is my fairly uneducated opinion.
On the other hand, If you have been diagnosed with a disease that is incurable, has non-specific origins, has not been through sufficient clinical trials and testing pointing to a treatment regimen and/or cure, then don't bother spending the time and money trying to find it there. They are extremely competent, but they are also extremely conservative. They are not going to "practice" anything on you that they don't think is going to cure or help you. They are not interested in ringing up massive unnecessary bills in the name of "Mayo is God" and nobody else's tests apply, as we had heard. Our Docs were perfectly willing to look at and heed not only the lab results but also the narritive write ups of the previousl MD's we have seen. Of course, maybe this is only truth as it relates to someone coming in with an ALS diagnosis. I can only speak from my experience.
I will say that one of the other Drs we saw said, "they will take your paperwork from previous MD's, say 'thanks' and then throw it in the trash." This did not happen in our case. Our primary Dr. undoubtedly spent hours going through our papers, lab reports, MD notes, personal notes and even research on the web to things we had brought up between our meeting with her on Monday and our meeting with her on Tuesday. She brought in the "Senior guy" dr. Kumar, but also consulted with Dr. Aksamit who has experience with Lyme, other ID's and ALS, and also boiled all of this down to her own organizational form for reference as we went through it on Tuesday. She wanted to help us, she felt some of our pain, she teared up when she told us what she believed was going on with Heidi. She was human first and Dr. second. I hope she stays that way. She was young (as senior residents at the Mayo go) I'm guessing mid thirties.
We did not get the news we wanted. In fact, we got the news that we feared. The Mayo Drs essentially said to us: "Heidi has ALS, and though we wish we could do something about it, we can't. It does not matter whether this was caused by, is related to, is in conjunction with or is preceeded by an infection or other condition of some sort (i.e. ectopic pregnancy, emergency surgery, blood transfusions, Lyme disease, Bartonella, Babesia, etc.) that the fact remains that everything points to ALS and there is not a cure, nor is there any real treatment that can change the progression or life expectancy of the patient or alter the course of the disease in any real way.
The options left to us, as far as they are concerned, are "managing the disease" so that minimal pain and suffering is endured by the patient (aka, Heidi, my wife.) In this regard, the Mayo Clinic, in all it's glory, offered us nothing more than anyone else, and that is hard to take. I really mean them no disrespect in saying that, because in our unbelieveable, unfair, unfortunate and completely uncomprehensible circumstance, no one on this planet seems to have an answer.
For our part, we have not given up. Is there a dent in our hope? For sure. You can't be on the receiving end of the discussion mentioned above and not feel deflated. We are still trying to get this IPLEX drug that we have mentioned before. We are still hopeful that someone will come up with something before it's too late. We have been on a seemingly endless quest for something, which as I mentioned before, has led us down many paths.
We are still hoping for a miracle, and maybe it is only after all other hope is lost that this can happen. This has occured to me as well. What would a miracle be if there were a reasonable scientific explanation for it? Not a miracle, that's for sure.
Peace,
B.
Rochester Day 2, and beyond
Hi Everybody.
Well, the short story is that we just arrived home safely, about 4 days early and not because we found a miracle cure in such a short time in "Mecca."
I'm tired and will blog more about the last day and everything else later.
Suffice it to say that we, to paraphrase my favorite band, "Still haven't found what we are looking for." After our meeting yesterday with the Neurologist, we just wanted to be home as soon as possible and got on the road yesterday afternoon. We made it home today shortly before the girls got home from school, so that was a treat. All in all the RT was just over 1800 miles. The wind today on the plains was howling and there was a storm of tumbleweeds racing across the highway, it was quite a sight.
Thanks so much for all the well wishes, prayers and other help you have offered us.
I'll re-group, catch up on some sleep and tell more soon.
Peace,
Bill
Well, the short story is that we just arrived home safely, about 4 days early and not because we found a miracle cure in such a short time in "Mecca."
I'm tired and will blog more about the last day and everything else later.
Suffice it to say that we, to paraphrase my favorite band, "Still haven't found what we are looking for." After our meeting yesterday with the Neurologist, we just wanted to be home as soon as possible and got on the road yesterday afternoon. We made it home today shortly before the girls got home from school, so that was a treat. All in all the RT was just over 1800 miles. The wind today on the plains was howling and there was a storm of tumbleweeds racing across the highway, it was quite a sight.
Thanks so much for all the well wishes, prayers and other help you have offered us.
I'll re-group, catch up on some sleep and tell more soon.
Peace,
Bill
Monday, January 5, 2009
Day 1 w/ Mayo & Co.
The hardest part about this tonight is that i am going to be honest about today. It's hard because I know that everyone reading this is hoping for a post that is uplifting and positive, something that expounds on the vast curing powers of the Drs here beyond any of the other people we have seen over the past two years. Unfortunately, we didn't find that.
The complex here is vast. Via the skyway and the "subway" from our hotel, it takes about 20 minutes of walking to get to the Mayo and Gonda buildings, the main treatment areas of the Mayo Clinic. The subway is not a subway in the sense of NYC (or much less the sandwich shop), it's a subway in the sense that you can walk sub-terra to avoid the frigid temperatures outside. Either way, i'm thankful for it this week as it was below zero this am when we went over there and the temp never climbed above 20 even though it was crystal clear outside.
When we arrived there shortly after our appointed time of 6:45 to registration, I discovered that Murphy's Law was firmly in place because the backpack that we thought had H's wallet in it, did not. The nice people there let us register without the "required photo ID" and the insurance card, but we still need to check back with them. Subsequently, I ran all the way back to the hotel room to look for it, and luckily found it in a different bag and returned in time for our 7:30 check in at floor 8 of the Mayo building.
The foyer of the buildings is what you wuld expect from a Medical Mecca. It is huge, grandiose, and filled with deeply stained wood, rich leather chairs, 60 ft. cielings, marble, granite and shiny placards with the names of the people who have undoubted given their lives, their life savings or some portion thereof to be recorded in the history and build the reputation of this impressive, imposing and yet lively feeling place.
After our bleary eyed wait and chance encounter with a nice older couple from Greeley, we were called to the treatment/meeting room. Our meeting with the Neurologists lasted 3 hours, give or take, and included a full historical perspective from us on Heidi's case as well as our suspicions regarding the blood transfusions she had in April of 06 related to the emergency surgery she had then, et cetera. First we started with a young lady neuro, named Dr. Leap (I think) who was very nice and compassionate. She was the one that listened to the whole story and then gave H her exam. She left to go over the case with another Dr. named Dr. Kumar who was clearly the "senior guy" on the case. About 20 mins after she left, they entered together and he was very direct and somewhat coarse. Not that he didn't say all the right things in terms of "we know this is hard, and we hate to tell anyone that they have a MND or ALS," but he wanted to review any "evidence" we had that there was potentially a Lyme disease component to the problem and dismissed the likely "cause" being blood transfusions. Because all of our papers were not perfectly organized, it took us a while to find the couple of papers that, combined with his lengthy symptom review, caused Dr. Phillips in CT to clinically diagnose H with Lyme. During this time, Dr. Kumar was pretty, how shall I put this..authoritative...about his view around Lyme or any other Infectious disease and it's relativity to ALS or H's condition.
His view, as I perceived it was this. Essentially, even if there was a lyme infection, that the 6 months+ of various antibiotic therapies should have addressed it, and besides that, even if one did currently exist, it most likely has nothing to do with her current condition. Our other Dr. the young lady, mused that H may be the victim of "a perfect storm" of things that may have caused her condition. Either way, they recommended that we do, and Heidi go through, another EMG.
For those of you that don't know, this procecure would sound more like a torture regimen vs. a test if I described it in detail, but according to Heidi "it's not all that bad." Let's see if you think this came out of a log in a forgotten cell in some third world country with liquid oozing through the walls and a tepid stench eminating from the corners.
"First we will ask you to undress and wait for us to enter, then we will attach electrodes to various parts of your extremities and run electrical current through them to record some data. It probably won't hurt too much. Then we will take needles and insert them deep into the muscle tissues of those same extremeties and run current through them and record some more data. We'll keep moving the electrodes and the needles around from place to place until we get what we need from you."
Now, bear in mind that nobody here wants to inflict pain on anyone, it's just part of the job, and honestly, the Dr. in the EMG room was as nice as she could possibly be, given the job she had to do.
In any case, tomorrow we have another consult with them, and Dr. Kumar did agree to have some blood drawn to do a Western blot as well as some serology (which I think means that they look at the live blood.) Just in case, I guess. We pretty much already know what the WB will say. I have some hope that the look that they take at the blood itself will show something that they do not expect and can further treat.
for all the world, I hope that they also find something in the EMG that indicates something other than the indicators for ALS. That is what we came here for, and why Heidi underwent the procedure again. The hope there would be Multifocal Motor Neuropathy, which is a treatable auto-immune disease that mimics the symptoms of ALS.
Since then, we have had a pretty rough day. A lot of it is because we are going through the same feelings and "news" that we got two years ago. Just this time, it's from the folks in whom we have placed some of our last reserves of hope for a cure to this thing.
So, no philosophy tonight, just the events of the day. Right now, we do have an appointment for Thursday with an RN that can point us towards what to do next, but if we don't get some good news tomorrow, we will probably get headed home and do the same with our local community in Colorado. Peace Out.
b.
The complex here is vast. Via the skyway and the "subway" from our hotel, it takes about 20 minutes of walking to get to the Mayo and Gonda buildings, the main treatment areas of the Mayo Clinic. The subway is not a subway in the sense of NYC (or much less the sandwich shop), it's a subway in the sense that you can walk sub-terra to avoid the frigid temperatures outside. Either way, i'm thankful for it this week as it was below zero this am when we went over there and the temp never climbed above 20 even though it was crystal clear outside.
When we arrived there shortly after our appointed time of 6:45 to registration, I discovered that Murphy's Law was firmly in place because the backpack that we thought had H's wallet in it, did not. The nice people there let us register without the "required photo ID" and the insurance card, but we still need to check back with them. Subsequently, I ran all the way back to the hotel room to look for it, and luckily found it in a different bag and returned in time for our 7:30 check in at floor 8 of the Mayo building.
The foyer of the buildings is what you wuld expect from a Medical Mecca. It is huge, grandiose, and filled with deeply stained wood, rich leather chairs, 60 ft. cielings, marble, granite and shiny placards with the names of the people who have undoubted given their lives, their life savings or some portion thereof to be recorded in the history and build the reputation of this impressive, imposing and yet lively feeling place.
After our bleary eyed wait and chance encounter with a nice older couple from Greeley, we were called to the treatment/meeting room. Our meeting with the Neurologists lasted 3 hours, give or take, and included a full historical perspective from us on Heidi's case as well as our suspicions regarding the blood transfusions she had in April of 06 related to the emergency surgery she had then, et cetera. First we started with a young lady neuro, named Dr. Leap (I think) who was very nice and compassionate. She was the one that listened to the whole story and then gave H her exam. She left to go over the case with another Dr. named Dr. Kumar who was clearly the "senior guy" on the case. About 20 mins after she left, they entered together and he was very direct and somewhat coarse. Not that he didn't say all the right things in terms of "we know this is hard, and we hate to tell anyone that they have a MND or ALS," but he wanted to review any "evidence" we had that there was potentially a Lyme disease component to the problem and dismissed the likely "cause" being blood transfusions. Because all of our papers were not perfectly organized, it took us a while to find the couple of papers that, combined with his lengthy symptom review, caused Dr. Phillips in CT to clinically diagnose H with Lyme. During this time, Dr. Kumar was pretty, how shall I put this..authoritative...about his view around Lyme or any other Infectious disease and it's relativity to ALS or H's condition.
His view, as I perceived it was this. Essentially, even if there was a lyme infection, that the 6 months+ of various antibiotic therapies should have addressed it, and besides that, even if one did currently exist, it most likely has nothing to do with her current condition. Our other Dr. the young lady, mused that H may be the victim of "a perfect storm" of things that may have caused her condition. Either way, they recommended that we do, and Heidi go through, another EMG.
For those of you that don't know, this procecure would sound more like a torture regimen vs. a test if I described it in detail, but according to Heidi "it's not all that bad." Let's see if you think this came out of a log in a forgotten cell in some third world country with liquid oozing through the walls and a tepid stench eminating from the corners.
"First we will ask you to undress and wait for us to enter, then we will attach electrodes to various parts of your extremities and run electrical current through them to record some data. It probably won't hurt too much. Then we will take needles and insert them deep into the muscle tissues of those same extremeties and run current through them and record some more data. We'll keep moving the electrodes and the needles around from place to place until we get what we need from you."
Now, bear in mind that nobody here wants to inflict pain on anyone, it's just part of the job, and honestly, the Dr. in the EMG room was as nice as she could possibly be, given the job she had to do.
In any case, tomorrow we have another consult with them, and Dr. Kumar did agree to have some blood drawn to do a Western blot as well as some serology (which I think means that they look at the live blood.) Just in case, I guess. We pretty much already know what the WB will say. I have some hope that the look that they take at the blood itself will show something that they do not expect and can further treat.
for all the world, I hope that they also find something in the EMG that indicates something other than the indicators for ALS. That is what we came here for, and why Heidi underwent the procedure again. The hope there would be Multifocal Motor Neuropathy, which is a treatable auto-immune disease that mimics the symptoms of ALS.
Since then, we have had a pretty rough day. A lot of it is because we are going through the same feelings and "news" that we got two years ago. Just this time, it's from the folks in whom we have placed some of our last reserves of hope for a cure to this thing.
So, no philosophy tonight, just the events of the day. Right now, we do have an appointment for Thursday with an RN that can point us towards what to do next, but if we don't get some good news tomorrow, we will probably get headed home and do the same with our local community in Colorado. Peace Out.
b.
Early am thought
It's almost 5am in Denver. Putting my philosophical musings of last night behind me, I think a 6:45 Monday am appointment at the Gonda building is some sort of a "Sickie Bootcamp Hazing Ritual." I fully expect to get over there and the place will be locked up until at least 7:30.
:-) B.
:-) B.
Sunday, January 4, 2009
We made it...
Just a quick post to let everyone know that we made it to Rochester. It was kinda hairy on I35 where we saw probably over 60 cars and trucks in the ditch or jacknifed. We saw several rollovers and some nasty looking crashes to boot. We pulled over at the right time last night, as it appears that the conditions got a lot worse and people didn't realize it until it was too late. I figured when we got gas outside of Omaha and I almost fell on my butt in the parking lot that it was a sign. It would have said something like "If you keep going, you are a total idiot." You know something subtle like that.
Anyhow, we did about 400 miles today and it was overall a little slower, but no major stoppages, so our time per mile was probably similar to yesterday. We arrived in Rochester at about 5:30 or so local time. Our hotel is ok, nothing great. We were a bit spoiled last night in a brand new Embassy suites with two high def flatscreens and a separate living area. This place doesn't even have a fridge.
Heidi said something tonight that hit me pretty hard as we were having dinner in a restaurant where we were probably half the average age in the place. "Old people don't know how good they have it." The idea being that though they may be here at the Mayo clinic for some reason, that they can at least walk around, and do everything that most of us take for granted every moment. None of them looked very happy with anything. Yet, they can do things...things like walking in, sitting down, flipping through the menu, picking up a fork and eating...etc. They also got to see their kids grow up and get married, maybe have grandkids etc. As I sit there doing all those thing for Heidi, and she sits there needing them done, I get her perspective.
It got me thinking a bit about the difference between enjoying life and "having a good time." I think kids have a great time. They play, they laugh, they gigle and play some more. It is pure and it is fully in the moment. They are enjoying THEMSELVES. Enjoying life, to me, is a bit different. It seems like enjoying life is a bit less in the moment and more reflective and conscious. Almost like something to can choose to do rather than just do. This life, everyday you have with your friends, your family, your kids and even yourself is a gift. You can choose to do with it what you might choose to do with any gift this holiday season. Hold it in your arms, cherish it, touch it, talk about it, feel lucky to have it...or you can choose to roll your eyes, wonder why you didn't get something else, wish for more, or even throw it away. I'm sure I've done all those things at one time or another, not only the good stuff, but also not recognizing the value in something, or a sentiment that was behind it even though it may have missed the mark in some material way.
Anyhow, it's getting late here, sorry to get so philosophical. I don't think the above thoughts are written very well, but i'm tired. I hope you get what I mean. Meanwhile, I'm going to go cherish my gift for another night. Hold her and give thanks that I have her now.
Then, I'm going to get up at 5:30 tomorrow am and go see some Drs.
Peace, B.
Anyhow, we did about 400 miles today and it was overall a little slower, but no major stoppages, so our time per mile was probably similar to yesterday. We arrived in Rochester at about 5:30 or so local time. Our hotel is ok, nothing great. We were a bit spoiled last night in a brand new Embassy suites with two high def flatscreens and a separate living area. This place doesn't even have a fridge.
Heidi said something tonight that hit me pretty hard as we were having dinner in a restaurant where we were probably half the average age in the place. "Old people don't know how good they have it." The idea being that though they may be here at the Mayo clinic for some reason, that they can at least walk around, and do everything that most of us take for granted every moment. None of them looked very happy with anything. Yet, they can do things...things like walking in, sitting down, flipping through the menu, picking up a fork and eating...etc. They also got to see their kids grow up and get married, maybe have grandkids etc. As I sit there doing all those thing for Heidi, and she sits there needing them done, I get her perspective.
It got me thinking a bit about the difference between enjoying life and "having a good time." I think kids have a great time. They play, they laugh, they gigle and play some more. It is pure and it is fully in the moment. They are enjoying THEMSELVES. Enjoying life, to me, is a bit different. It seems like enjoying life is a bit less in the moment and more reflective and conscious. Almost like something to can choose to do rather than just do. This life, everyday you have with your friends, your family, your kids and even yourself is a gift. You can choose to do with it what you might choose to do with any gift this holiday season. Hold it in your arms, cherish it, touch it, talk about it, feel lucky to have it...or you can choose to roll your eyes, wonder why you didn't get something else, wish for more, or even throw it away. I'm sure I've done all those things at one time or another, not only the good stuff, but also not recognizing the value in something, or a sentiment that was behind it even though it may have missed the mark in some material way.
Anyhow, it's getting late here, sorry to get so philosophical. I don't think the above thoughts are written very well, but i'm tired. I hope you get what I mean. Meanwhile, I'm going to go cherish my gift for another night. Hold her and give thanks that I have her now.
Then, I'm going to get up at 5:30 tomorrow am and go see some Drs.
Peace, B.
Saturday, January 3, 2009
Pre-start SNAFU, but made it to Omaha
This trip almost never happened. Last night when I was loading the van, the door would not open and the ramp would not deploy. I thought for sure it was some problem that originated when Big-O changed the tires, but it wasn't. Luckily one of Phil's friends, Jeff, who works at Tennessee Mobility out near Nashville got on the phone with me for about 1/2 hour and walked me through numerous problems that might be happenning. It turned out there were two issues, one a breaker switch in the engine had thrown due to me trying to open the door with it being out of sync, and finally, there was a pencil wedged in the lower track on the door that was jamming the door preventing it from opening all the way, which prevented the ramp circuit from completing. Once Jeff figured out that it was probably a jam, I found it, cleared it out and we were operational shorly thereafter. At least now a know a few things to check if the ramp isn't working, so once again, thank God for friends, and I'm glad to have some more experience with the mechanical operations of the van.
Anyhow, the trip was fairly uneventful. We had about a 1/2 hour delay 70 miles outside of Denver due to a one car accident that had a flight for life evacuation, so they closed the highway, and we hit a nasty wind and ice storm just outside of Omaha this evening, so decided to pull over at the nearest place. Either my wiper fluid froze or the hoses froze, but either way I couldn't see and it was not safe to drive anymore. We found a nice, new Embassy Suites and are bunked down until tomorrow. Hopefully, the ice will clear out soon and we can get on the road fairly early. All in all, we made it about 550 miles today in about 8 hours. We listened to "The Gate House" by Nelson DeMille, and that made the time go pretty fast. I read The Gold Coast a few years ago, and this is the sequel to that book. Audiobooks are awesome for these long drives.
Just going into OT in the playoff game, then I'm hitting the hay. Got about 400 miles to go tomorrow to Rochester, hopefully the ice will clear out early. Peace, B.
Anyhow, the trip was fairly uneventful. We had about a 1/2 hour delay 70 miles outside of Denver due to a one car accident that had a flight for life evacuation, so they closed the highway, and we hit a nasty wind and ice storm just outside of Omaha this evening, so decided to pull over at the nearest place. Either my wiper fluid froze or the hoses froze, but either way I couldn't see and it was not safe to drive anymore. We found a nice, new Embassy Suites and are bunked down until tomorrow. Hopefully, the ice will clear out soon and we can get on the road fairly early. All in all, we made it about 550 miles today in about 8 hours. We listened to "The Gate House" by Nelson DeMille, and that made the time go pretty fast. I read The Gold Coast a few years ago, and this is the sequel to that book. Audiobooks are awesome for these long drives.
Just going into OT in the playoff game, then I'm hitting the hay. Got about 400 miles to go tomorrow to Rochester, hopefully the ice will clear out early. Peace, B.
Friday, January 2, 2009
Checklist for Cold Weather Car Travel:
I figured I'd do this list on the blog so for future reference, anyone might find it useful.
When going across cold, snowy, remote and barren northern terrain in the middle of winter, it's a good idea to put some provisions in the car "Just in Case." Of course, if you are fully equipped, it is unlikely that anything will happen, which is the hope, anyhow. Of course, when you are poorly equipped, well, that's when you usually run off the road in a snowstorm in a white car and are not discovered until the spring thaw, and they excavate you like a Wooley Mammoth or something.
In addition to putting in a new battery, brand new beautiful Michelin all weather tires and changing the oil...here's what we have in the van (just in case)
UNOFFICIAL CHECKLIST FOR COLDWEATHER CROSS COUNTRY TRIP
What else am I missing?
So, the weather is supposed to be COLD and start snowing tomorrow. :-(
Well, it's an adventure...
B.
When going across cold, snowy, remote and barren northern terrain in the middle of winter, it's a good idea to put some provisions in the car "Just in Case." Of course, if you are fully equipped, it is unlikely that anything will happen, which is the hope, anyhow. Of course, when you are poorly equipped, well, that's when you usually run off the road in a snowstorm in a white car and are not discovered until the spring thaw, and they excavate you like a Wooley Mammoth or something.
In addition to putting in a new battery, brand new beautiful Michelin all weather tires and changing the oil...here's what we have in the van (just in case)
UNOFFICIAL CHECKLIST FOR COLDWEATHER CROSS COUNTRY TRIP
- Lots of Blankets
- An electric lighter plug in blanket
- Flashlight (battery powered)
- Flashlight/signal light (lighter plug)
- Yellow signal light (lighter plug) (so I can pretend to be like Starsky in Hutch, but in a white underpowered wheelchair equipped minivan instead of a bitchin' red and white muscle car.)
- candles (for those romantic snowbank ditch interludes)
- a lighter (for sparking up anything that needs sparking up.)
- jumper cables (to jump the guy that didn't put in the new battery, or mine after it dies from cranking out the tunes once the engine dies.)
- a bright sign that says "CALL TOW" (Just in case anyone sees us in a ditch off the road and thinks that we really want to just hang out and party there.)
- pillows (see candles above)
- warm weather clothes (hats/gloves/boots/etc.) (for that hike to set my rabbit snares, see "good knife and emergency pan" below)
- snow shovel (for making an igloo)
- window scrapers (for cleaning the Igloo windows)
- a case of water (ok, probably overkill)
- some snacks (trail mix, etc.) (to feed the rabbits and fatten them up.)
- toilet paper (God forbid you have to use it for it's normally intended use or in case we see some high school kid's house that looks sadly undecorated in the middle of Nebraska.)
- IPod with lots of tunes on it (and an audio tape or two.)
- IPod FM tuner (Thanks Bob and Deb.)
- Headlamp Light (for spelunking or just in case I want to search around in the dark for something and need my hands to do it.)
- Extra Batteries
- Emergency pan for boiling or cooking rabbits I might snare from my expertise garnered from watching Survivorman and Man vs. Wild.
- a good knife
What else am I missing?
So, the weather is supposed to be COLD and start snowing tomorrow. :-(
Well, it's an adventure...
B.
Prep time
Hi Everyone,
It's Friday the 2nd and we are going to get ready to go today. We are driving up there, though driving to MN in January is not exactly my idea of a good time, we are driving for a few reasons.
1) We got a late start on our tickets and they cost an arm and a leg, plus the change fees were $375 per ticket, and the Mayo people said that they don't know for sure when we would be able to come home.
2) If we drive, we'll be able to have Heidi's electric wheelchair there and so that will give her better mobility.
3) Rochester isn't exactly a major metro area, so flying means either going to Minneapolis and renting a car for the 75 mile trip to Rochester, or changing planes in Minneapolis, neither of which is very convenient for us with our mobility issues.
4) It is, according to Mapquest, only about 13 hours drive time, and we are going to do it over a couple of days, so we should be fine.
The only thing we are really concerned with is the weather, so I got a new battery, got the oil changed and am going to get some snow tires today at least for the front tires (the Caravan is FWD). We'll also bring some emergency provisions in the car just in case we get stuck or they close down one of the highways. I'll also fill up the car any time it gets to 1/2 tank or so instead of running it way down. So, don't worry, we'll be ok on the drive.
Will be packing, cleaning and prepping today and on the road tomorrow, so probably won't post here until Saturday night with any news from day one of the drive.
Peace,
Bill
It's Friday the 2nd and we are going to get ready to go today. We are driving up there, though driving to MN in January is not exactly my idea of a good time, we are driving for a few reasons.
1) We got a late start on our tickets and they cost an arm and a leg, plus the change fees were $375 per ticket, and the Mayo people said that they don't know for sure when we would be able to come home.
2) If we drive, we'll be able to have Heidi's electric wheelchair there and so that will give her better mobility.
3) Rochester isn't exactly a major metro area, so flying means either going to Minneapolis and renting a car for the 75 mile trip to Rochester, or changing planes in Minneapolis, neither of which is very convenient for us with our mobility issues.
4) It is, according to Mapquest, only about 13 hours drive time, and we are going to do it over a couple of days, so we should be fine.
The only thing we are really concerned with is the weather, so I got a new battery, got the oil changed and am going to get some snow tires today at least for the front tires (the Caravan is FWD). We'll also bring some emergency provisions in the car just in case we get stuck or they close down one of the highways. I'll also fill up the car any time it gets to 1/2 tank or so instead of running it way down. So, don't worry, we'll be ok on the drive.
Will be packing, cleaning and prepping today and on the road tomorrow, so probably won't post here until Saturday night with any news from day one of the drive.
Peace,
Bill
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