I received this via email today and thought it was pretty amazing.
It did not have an author credit on it, so if anyone knows who wrote it, please let me know so I can credit the author.
=================
G U I D A N C E
Dancing With God
When I meditated on the word Guidance,
I kept seeing "dance" at the end of the word.
I remember reading that doing God's will is a lot like dancing.
When two people try to lead, nothing feels right.
The movement doesn't flow with the music,
and everything is quite uncomfortable and jerky.
When one person realizes that, and lets the other lead,
both bodies begin to flow with the music.
One gives gentle cues, perhaps with a nudge to the back
or by pressing Lightly in one direction or another.
It's as if two become one body, moving beautifully.
The dance takes surrender, willingness,
and attentiveness from one person
and gentle guidance and skill from the other.
My eyes drew back to the word Guidance.
When I saw "G": I thought of God, followed by "u" and "i".
"God, "u" and "i" dance."
God, you, and I dance.
As I lowered my head, I became willing to trust
that I would get guidance about my life.
Once again, I became willing to let God lead.
My prayer for you today is that God's blessings
and mercies are upon you on this day and everyday.
May you abide in God, as God abides in you.
Dance together with God, trusting God to lead
and to guide you through each season of your life.
If God has done anything for you in your life,
please share this message with someone else.
There is no cost but a lot of rewards;
so let's continue to pray for one another.
And I Hope You Dance Through 2009!
====== end snip=====
My take on this is that it is about Faith. Faith to let God lead and trust that there is something else beyond what we know and that someday all of this will make perfect sense, even though right now it seems like pure insanity. Honestly, it is this faith that I have that keeps me sane right now. I'm thankful for that.
Wednesday, January 28, 2009
Tuesday, January 27, 2009
Some interesting stats...
Since part of this blog is meant to help other people with their struggles, and part of it is meant to help me (by getting it out of my head), I thought you might be interested to know it is having its intended effect. Now, of course it helps me to write it down (though a lot of this continues to rattle around in my head.) But you might be interested to know that as of yesterday, over 700 people from 35 States and 9 other countries have visited the blog and I have received supportive notes from scores of them letting me know that it is helping them in some way. Some of the messages come via facebook, on the blog notes, phone calls and some via email, but i'm amazed that in only a couple weeks of posting that so many people have found the blog and in it, a message that resonates with them in some positive way. It makes me feel good to be able to help others, and some days feeling good is not so easy, so I really appreciate hearing about it. Hopefully it is a small reflection of all the help we have received from friends and family as we go through this.
Peace,
Bill
Peace,
Bill
Monday, January 26, 2009
PIcking up in late 2007, day to day battle with ALS
As I've mentioned we always suspected that there was something wrong with the blood that H received in her massive amounts of transfusions related to the story that started this blog, and we think, started this whole mess. Thus far I've talked about our early research and subsequent treatments for Lyme disease and other co-infections in those early days.
During this whole period, there were other things we were trying, but we found out about a Doc in Colorado Springs that at "cured" himself after being diagnosed with ALS and being wheelchair bound because he suspected he had, and treated himself for, Lyme disease and it's co-infections with IV antibiotics. By the time we heard about this, he was not accepting any new patients and within a couple of weeks he closed down a clinic he had opened to treat others with MND (Motor Neuron Disease). We didn't know how many people he treated or how much success he had with those treatments, but any single positive case was a hopeful one as far as we were concerned, so as fast as the roller coaster went up when we heard about him, it came down when we found out he'd closed for "business." We heard that his PA was going to open a clinic and treat people as he did, but she was not yet ready to accept any patients. This was in the fall of 07. I'll re-visit this whole story later.
At this point, H was having trouble walking and needed support, so I would walk backwards in front of her and she would hold on to my arms and we could go short distances of 50 feet or less. We were starting to wonder how we were going to deal with the stairs in our house, as we were taking one step at a time and it was getting scary for her. I knew the time was near that she would not be able to manage the stairs so I had been working out and carrying 90lbs of dumbbells up and down the stairs every time I went up and down. Every once in a while, we I would carry her up if she were tired and managed that ok. There's definitely a difference between dumbbells with nice handles and H with no handles and a slight weight differential, but it was fine. We managed.
We had a huge Thanksgiving dinner that year with lots of family in town and a big dinner at Mom and Jack's place. It was sort of melancholy. We gave thanks for a lot of things, of course, but in that situation there's sort of this "elephant in the room" where even while you are giving thanks for the good things in your life, you wonder why you are holding some of the cards you have been dealt.
It is around this time that we decided as a family to pull the girls out of school in January and go to Hawaii for a couple of months to spend time as a family and enjoy some life experiences together outside of our little microcosm in HR. Part of the hope too was that the stress of everyday life and our situation was contributing to H's condition and that we could take that away while we searched for alternative cures or treatments.
It was about this time that some people had taken up Lithium as a treatment for ALS, largely based on some anecdotal success stories coming out of Europe, so we secured for her a prescription for that and she started taking it shortly before we left for our trip. There was this amazing video of a guy in Finland (I think) that had been wheelchair bound (supposedly) that obviously had fairly advanced bulbar onset of ALS or some MND (meaning he had a hard time talking and swallowing) and he was riding his bike and running 30 yards or so on YouTube. This little demonstration gave us hope that Lithium was the answer (once again) and the roller coaster went up. This hope, combined with the planning of our big trip had us in a phase of relative euphoria and happiness as we busied ourselves with the details of the trip.
Everything seemed to come together perfectly as we planned our stay. I won't go into detail about that as I blogged often on that trip here: http://sedgtrip.blogspot.com/ and here: http://billshiblog.blogspot.com/ but we were there for a tremendous adventure from January 20th to March 25th of 2008. I'm thankful that I'm in the Internet business and a company owner, which afforded me the freedom to do that. I'm also thankful to the whole team at Thunderbolt Group (http://www.thunderboltgroup.com) that helped run the business during my absence and dealt with me being 4 hours behind them and "out of pocket" much of the time.
The Lithium trial was really a non-scientific clinical trial that was being "self managed" online by a group on http://www.patientslikeme.com/. I believe about 200 people had enlisted to take the drug and report their progress or lack thereof on the website. It was very well organized and really an amazing effort. The departure for us was that we had not gone down the path of "treating ALS" before as we were not accepting that as a diagnosis because of the blood issues. But we felt that it was worth it to pursue this path because Lithium is a known drug, has been used for a long time and is relatively safe as long as your liver function is monitored with regularity.
One of the downsides of the Lithium was that it caused GI issues for H and with her declining mobility, well, getting around quickly was becoming a problem and caused its share of stressful situations on our trip. In the end, we did not see any efficacy as a result of the Lithium, so H discontinued use of it after about 2.5 months of use. Later, it was found in the study that it really didn't help anyone, or so it seemed....Another bottom of the roller coaster for us.
During and before the Hawaii trip, Heidi was on a number of other supplements, the combination of which seemed to upset her digestive system, so there were also a number of supplements to try and counteract those issues. She was literally taking full handfulls of pills every day and had them organized into am/noon/pm doses in a huge plastic sectioned box. It was unbelieveable. I can't even begin to describe all the supplements, but again, none of them seemed to help, so it doesn't really seem to be worth the effort to go through that whole "rigamarole."
She had done a long "consult" with a nutritionist in the Bay Area for about $275.00 that ordered a bunch of blood tests (which probably cost $1500) and got all her other labs and therefore went on many of these supplements. This seemed to be a complete waste of time and a lot of money as well as huge boxes of these supplements showed up in the mail every week, not to mention the difficulty in managing these doses and different volumes of pills, liquids, droppers and powders.
Maybe I'll get motivated to give more detail on all that stuff. If anyone reads this and wants details...let me know via a comment on the blog. All it really seemed to do was create havoc in H's digestive tract.
During this whole period, there were other things we were trying, but we found out about a Doc in Colorado Springs that at "cured" himself after being diagnosed with ALS and being wheelchair bound because he suspected he had, and treated himself for, Lyme disease and it's co-infections with IV antibiotics. By the time we heard about this, he was not accepting any new patients and within a couple of weeks he closed down a clinic he had opened to treat others with MND (Motor Neuron Disease). We didn't know how many people he treated or how much success he had with those treatments, but any single positive case was a hopeful one as far as we were concerned, so as fast as the roller coaster went up when we heard about him, it came down when we found out he'd closed for "business." We heard that his PA was going to open a clinic and treat people as he did, but she was not yet ready to accept any patients. This was in the fall of 07. I'll re-visit this whole story later.
At this point, H was having trouble walking and needed support, so I would walk backwards in front of her and she would hold on to my arms and we could go short distances of 50 feet or less. We were starting to wonder how we were going to deal with the stairs in our house, as we were taking one step at a time and it was getting scary for her. I knew the time was near that she would not be able to manage the stairs so I had been working out and carrying 90lbs of dumbbells up and down the stairs every time I went up and down. Every once in a while, we I would carry her up if she were tired and managed that ok. There's definitely a difference between dumbbells with nice handles and H with no handles and a slight weight differential, but it was fine. We managed.
We had a huge Thanksgiving dinner that year with lots of family in town and a big dinner at Mom and Jack's place. It was sort of melancholy. We gave thanks for a lot of things, of course, but in that situation there's sort of this "elephant in the room" where even while you are giving thanks for the good things in your life, you wonder why you are holding some of the cards you have been dealt.
It is around this time that we decided as a family to pull the girls out of school in January and go to Hawaii for a couple of months to spend time as a family and enjoy some life experiences together outside of our little microcosm in HR. Part of the hope too was that the stress of everyday life and our situation was contributing to H's condition and that we could take that away while we searched for alternative cures or treatments.
It was about this time that some people had taken up Lithium as a treatment for ALS, largely based on some anecdotal success stories coming out of Europe, so we secured for her a prescription for that and she started taking it shortly before we left for our trip. There was this amazing video of a guy in Finland (I think) that had been wheelchair bound (supposedly) that obviously had fairly advanced bulbar onset of ALS or some MND (meaning he had a hard time talking and swallowing) and he was riding his bike and running 30 yards or so on YouTube. This little demonstration gave us hope that Lithium was the answer (once again) and the roller coaster went up. This hope, combined with the planning of our big trip had us in a phase of relative euphoria and happiness as we busied ourselves with the details of the trip.
Everything seemed to come together perfectly as we planned our stay. I won't go into detail about that as I blogged often on that trip here: http://sedgtrip.blogspot.com/ and here: http://billshiblog.blogspot.com/ but we were there for a tremendous adventure from January 20th to March 25th of 2008. I'm thankful that I'm in the Internet business and a company owner, which afforded me the freedom to do that. I'm also thankful to the whole team at Thunderbolt Group (http://www.thunderboltgroup.com) that helped run the business during my absence and dealt with me being 4 hours behind them and "out of pocket" much of the time.
The Lithium trial was really a non-scientific clinical trial that was being "self managed" online by a group on http://www.patientslikeme.com/. I believe about 200 people had enlisted to take the drug and report their progress or lack thereof on the website. It was very well organized and really an amazing effort. The departure for us was that we had not gone down the path of "treating ALS" before as we were not accepting that as a diagnosis because of the blood issues. But we felt that it was worth it to pursue this path because Lithium is a known drug, has been used for a long time and is relatively safe as long as your liver function is monitored with regularity.
One of the downsides of the Lithium was that it caused GI issues for H and with her declining mobility, well, getting around quickly was becoming a problem and caused its share of stressful situations on our trip. In the end, we did not see any efficacy as a result of the Lithium, so H discontinued use of it after about 2.5 months of use. Later, it was found in the study that it really didn't help anyone, or so it seemed....Another bottom of the roller coaster for us.
During and before the Hawaii trip, Heidi was on a number of other supplements, the combination of which seemed to upset her digestive system, so there were also a number of supplements to try and counteract those issues. She was literally taking full handfulls of pills every day and had them organized into am/noon/pm doses in a huge plastic sectioned box. It was unbelieveable. I can't even begin to describe all the supplements, but again, none of them seemed to help, so it doesn't really seem to be worth the effort to go through that whole "rigamarole."
She had done a long "consult" with a nutritionist in the Bay Area for about $275.00 that ordered a bunch of blood tests (which probably cost $1500) and got all her other labs and therefore went on many of these supplements. This seemed to be a complete waste of time and a lot of money as well as huge boxes of these supplements showed up in the mail every week, not to mention the difficulty in managing these doses and different volumes of pills, liquids, droppers and powders.
Maybe I'll get motivated to give more detail on all that stuff. If anyone reads this and wants details...let me know via a comment on the blog. All it really seemed to do was create havoc in H's digestive tract.
Tuesday, January 20, 2009
Hawaii in May 2007...
I imagine as the years go by, this chronicle will be useful in many ways, but part of it is me "telling the girls" about these times which they can read at some future date as they grow older and want to know more. So, if you will indulge my sidebars, I think you might even enjoy them. A little lightness can't hurt, especially in this story, and for me, tonight, I can use it too. I hope Google never kills of Blogger like they did their print ad strategy this week...come to think of it, maybe I better cut and paste all this stuff into a Word document and back it up...anyhow...
As many of you probably know, Heidi and I met in Hawaii back in 1991 and so the Islands are a special place for us. It's where we fell in love. Its where I asked her to marry me a year later...at A Taste of Honolulu, a food and wine festival, where my courage was bolstered by some fine Hawaiian pineapple wine. We make it a point to have it again on every trip and it seems to have magical seductive powers for some reason. ;-)
It's where we lived together in the back of the Aina Haina valley for a year in a little one bedroom walk out and watched Gecko Wars on the wall from our hammock and cooked our dinners on a hot-plate and in a toaster oven. (I think Heidi made a turkey in the toaster oven one year, must've been a pretty small turkey. Maybe it was a chicken.)
It's where we were first married at the little Lutheran church in Wahiawa, which was really meant as a means to get flight benefits from Heidi's airline job, but turned into a beautiful, amazing experience. It's where we had our honeymoon after the big Ft. Walton Beach wedding, at which Heidi didn't cry at because she had a chance to get her nerves and her tears out an the aforementioned Wahiawa marriage, and she realized it was too late anyhow, so what's the point, eh? ;-)
So, I know you are all asking yourselves at this point..."What in the heck are 'gecko wars'." Well, I personally believe that the ultimate fighting cage fight rage of late was probably inspired by someone watching territorial geckos go at it once they have staked their claim by an outdoor lamp on a wall in some tropical place. It is amazingly entertaining to see these charming little creatures (think GEICO gecko) chirp and puff their chests when they get a good spot to attack some unsuspecting bug that has been attracted by the light. The "War" commences when another gecko decides to try and steal the aforementioned bug, from one that has it already half in it's mouth but hasn't had a chance to gulp it down yet. Let me tell ya, the little charming English accent is no where to be found when these little dudes are fiercely competing for half a roach or the thorax of a termite.
Must be my night to use the word "aforementioned." Department of redundancy Department. Please forgive, but it worked so well in both cases, and then again in this little digression.
I think we made it back there once between 1993 and 2000 because as a young couple, money was pretty scarce. This was primarily because I was chasing entrepreneurial dreams and Heidi was "actually working." So, really, only one of us was making any money. Since then, though we have been back many times, with our kids and without, and we love it more with each visit. We would probably have already moved there if it were more practical with the kids and work, and we didn't have such an awesome community here in Colorado. In fact, in the face of this, practicality falls away and the truth probably is that I wouldn't be able to do this without our community here, but that is another story.
Shortly after we received the ALS diagnosis, my Mom and Jack offered to take care of the girls for us and so Heidi and I decided to take a trip back to Hawaii. During this period she still could walk fine, though longer walks were starting to get harder for her. I got to walk next to her in what we call the "tuck" position. This has always been our "romantic" walking position on dates, etc. over the years, where she would tuck her left arm under my right arm and off we go. Some people hold hands or put their arms around shoulder and waist. We had the "tuck." Now, the tuck took on a new significance as it also added support for her as we walked, so we probably looked like we were romantically walking everywhere, which is a nice thought. And, of course we were.
On the first five nights of the trip, we stayed at the Mauna Lani Hotel, where it so happened some good friends of ours, a couple from our street Highlands Ranch, were staying there with his brother and his wife, and also NO kids. It also just so happens that they are very much into good food and excellent wine and we had a splendid visit to some of the Big Islands most excellent restaurants generally accompanied by some of the finest wines available. Don had shipped over a couple of cases from his cellar and Dave and I each brought a few bottles, and so we would generally meet in their room, enjoy a glass or two and then head out to dinner, toting along a couple more bottles to accompany dinner. We were all spoiled rotten and it was great.
If you have never been to the Mauna Lani Resort, I highly recommend it. It is a resort hotel that has a very laid-back feeling about it. The grounds are amazing, with not only a fabulous private cove protected by barriers from the surf break, but also beautiful ancient Hawaiian fish ponds and a yurdle of sea turtles (That is my made up word for a group, flock, pod or whatever of a bunch of turtles, hey, if GW Bush can make up words, so can I.) It is expensive to stay there, but not much more so than say the Hilton Waikoloa similar resorts. They probably have the most amazing breakfast buffet of any place I've ever stayed, and out of all the fantastic dinners we have had in Hawaii over the past few years, the food and the ambiance of the Canoe House was, to me, the best. It was probably also the most expensive, but it was worth it. The sunset photo on this blog is a photo I took sitting at the table at the canoe house, having dinner witht the family on our most recent trip there, my profile photo is looking back at us from the opposite side of the table.
On this trip, we walked the grounds, enjoyed the pool, the fabulous hammocks on the beach and went on a snorkeling catamaran sail one day out of the small marina that they have there near the hotel. It was awesome.
I should have kept notes on the restaurants we visited, but Merriman's up in Waimea town is awesome, Alan Wong's (I think at the Four Seasons) was amazing. I remember at one point the wind was howling through the restaurant and so they had to close some of the shutters. We also ate Sushi at the Fairmount Orchid(which shares the road to the Mauna Lani and is just up the beach) and Italian at the Hilton Waikoloa with Don & Judi on our last night there, which was also, well, fabulous. I'm out complimentary keywords, so I'm glad the restaurant saga is over.
From there we were off to Maui and the Westin Resort in Kaanapali for another five nights. The Westin Resort is nice in a very "resorty" kind of way. The Mauna Lani feels like Hawaii, the Westin feels like, well, just about any Westin resort on a beach somewhere. Put it this way, when one of my "local" friends asks me where we stayed and I say the Mauna Lani, they say "OOOOOOHHHHH, that place is NICE yea?!!!! When I say then we went to the Westing on Maui they go, "Oh, that's a nice place." There's a difference.
We did a fun drive around the north end of the Island up past Kapalua and found a crazy winding one-car road, some practically abandoned trails down to steep sea cliffs with crystal clear azure water, where I was convinced there were plenty of tasty fish and lobster lurking. Somehow, Heidi convinced me to not jump off the cliffs into the water with my spear and try and get us some dinner. If we had a condo with our own kitchen, I doubt she would have succeeded. We also found some other great looking beaches that were a little off the beaten track and hope to return there one day to enjoy them. Most of our stay on Maui was spent hanging around the pool and de-compressing from our painful 8 week diagnosis process and subsequent shock and sadness. We did have a great dinner in Lahaina (can't remember the name of the restaurant, but it was awesome..David's maybe.) And another fun day walking around Lahaina town.
So, there's a break from the medical tale. I hope you enjoyed it. We certainly did at the time, and will treasure those days forever.
As many of you probably know, Heidi and I met in Hawaii back in 1991 and so the Islands are a special place for us. It's where we fell in love. Its where I asked her to marry me a year later...at A Taste of Honolulu, a food and wine festival, where my courage was bolstered by some fine Hawaiian pineapple wine. We make it a point to have it again on every trip and it seems to have magical seductive powers for some reason. ;-)
It's where we lived together in the back of the Aina Haina valley for a year in a little one bedroom walk out and watched Gecko Wars on the wall from our hammock and cooked our dinners on a hot-plate and in a toaster oven. (I think Heidi made a turkey in the toaster oven one year, must've been a pretty small turkey. Maybe it was a chicken.)
It's where we were first married at the little Lutheran church in Wahiawa, which was really meant as a means to get flight benefits from Heidi's airline job, but turned into a beautiful, amazing experience. It's where we had our honeymoon after the big Ft. Walton Beach wedding, at which Heidi didn't cry at because she had a chance to get her nerves and her tears out an the aforementioned Wahiawa marriage, and she realized it was too late anyhow, so what's the point, eh? ;-)
So, I know you are all asking yourselves at this point..."What in the heck are 'gecko wars'." Well, I personally believe that the ultimate fighting cage fight rage of late was probably inspired by someone watching territorial geckos go at it once they have staked their claim by an outdoor lamp on a wall in some tropical place. It is amazingly entertaining to see these charming little creatures (think GEICO gecko) chirp and puff their chests when they get a good spot to attack some unsuspecting bug that has been attracted by the light. The "War" commences when another gecko decides to try and steal the aforementioned bug, from one that has it already half in it's mouth but hasn't had a chance to gulp it down yet. Let me tell ya, the little charming English accent is no where to be found when these little dudes are fiercely competing for half a roach or the thorax of a termite.
Must be my night to use the word "aforementioned." Department of redundancy Department. Please forgive, but it worked so well in both cases, and then again in this little digression.
I think we made it back there once between 1993 and 2000 because as a young couple, money was pretty scarce. This was primarily because I was chasing entrepreneurial dreams and Heidi was "actually working." So, really, only one of us was making any money. Since then, though we have been back many times, with our kids and without, and we love it more with each visit. We would probably have already moved there if it were more practical with the kids and work, and we didn't have such an awesome community here in Colorado. In fact, in the face of this, practicality falls away and the truth probably is that I wouldn't be able to do this without our community here, but that is another story.
Shortly after we received the ALS diagnosis, my Mom and Jack offered to take care of the girls for us and so Heidi and I decided to take a trip back to Hawaii. During this period she still could walk fine, though longer walks were starting to get harder for her. I got to walk next to her in what we call the "tuck" position. This has always been our "romantic" walking position on dates, etc. over the years, where she would tuck her left arm under my right arm and off we go. Some people hold hands or put their arms around shoulder and waist. We had the "tuck." Now, the tuck took on a new significance as it also added support for her as we walked, so we probably looked like we were romantically walking everywhere, which is a nice thought. And, of course we were.
On the first five nights of the trip, we stayed at the Mauna Lani Hotel, where it so happened some good friends of ours, a couple from our street Highlands Ranch, were staying there with his brother and his wife, and also NO kids. It also just so happens that they are very much into good food and excellent wine and we had a splendid visit to some of the Big Islands most excellent restaurants generally accompanied by some of the finest wines available. Don had shipped over a couple of cases from his cellar and Dave and I each brought a few bottles, and so we would generally meet in their room, enjoy a glass or two and then head out to dinner, toting along a couple more bottles to accompany dinner. We were all spoiled rotten and it was great.
If you have never been to the Mauna Lani Resort, I highly recommend it. It is a resort hotel that has a very laid-back feeling about it. The grounds are amazing, with not only a fabulous private cove protected by barriers from the surf break, but also beautiful ancient Hawaiian fish ponds and a yurdle of sea turtles (That is my made up word for a group, flock, pod or whatever of a bunch of turtles, hey, if GW Bush can make up words, so can I.) It is expensive to stay there, but not much more so than say the Hilton Waikoloa similar resorts. They probably have the most amazing breakfast buffet of any place I've ever stayed, and out of all the fantastic dinners we have had in Hawaii over the past few years, the food and the ambiance of the Canoe House was, to me, the best. It was probably also the most expensive, but it was worth it. The sunset photo on this blog is a photo I took sitting at the table at the canoe house, having dinner witht the family on our most recent trip there, my profile photo is looking back at us from the opposite side of the table.
On this trip, we walked the grounds, enjoyed the pool, the fabulous hammocks on the beach and went on a snorkeling catamaran sail one day out of the small marina that they have there near the hotel. It was awesome.
I should have kept notes on the restaurants we visited, but Merriman's up in Waimea town is awesome, Alan Wong's (I think at the Four Seasons) was amazing. I remember at one point the wind was howling through the restaurant and so they had to close some of the shutters. We also ate Sushi at the Fairmount Orchid(which shares the road to the Mauna Lani and is just up the beach) and Italian at the Hilton Waikoloa with Don & Judi on our last night there, which was also, well, fabulous. I'm out complimentary keywords, so I'm glad the restaurant saga is over.
From there we were off to Maui and the Westin Resort in Kaanapali for another five nights. The Westin Resort is nice in a very "resorty" kind of way. The Mauna Lani feels like Hawaii, the Westin feels like, well, just about any Westin resort on a beach somewhere. Put it this way, when one of my "local" friends asks me where we stayed and I say the Mauna Lani, they say "OOOOOOHHHHH, that place is NICE yea?!!!! When I say then we went to the Westing on Maui they go, "Oh, that's a nice place." There's a difference.
We did a fun drive around the north end of the Island up past Kapalua and found a crazy winding one-car road, some practically abandoned trails down to steep sea cliffs with crystal clear azure water, where I was convinced there were plenty of tasty fish and lobster lurking. Somehow, Heidi convinced me to not jump off the cliffs into the water with my spear and try and get us some dinner. If we had a condo with our own kitchen, I doubt she would have succeeded. We also found some other great looking beaches that were a little off the beaten track and hope to return there one day to enjoy them. Most of our stay on Maui was spent hanging around the pool and de-compressing from our painful 8 week diagnosis process and subsequent shock and sadness. We did have a great dinner in Lahaina (can't remember the name of the restaurant, but it was awesome..David's maybe.) And another fun day walking around Lahaina town.
So, there's a break from the medical tale. I hope you enjoyed it. We certainly did at the time, and will treasure those days forever.
Sunday, January 18, 2009
Picking up the Lyme Story
So, H was taking oral antibiotics, specifically Ceftin (tm), and later Flagil (tm), and seemed to be fairly stable for a period of time on the Ceftin, but took a turn for the worse on the Flagil, so we stopped that pretty quickly. Along with this, there's lots of digestive issues happening so she had to take a lot of acidophilous to help that. At this point, things seemed to be progressing very slowly and the "milestones" were few and far between in terms of what we noticed on a day to day or even week to week basis.
In addition to the clinical diagnosis of Lyme, Dr. Phillips also tested for "co-infections" to lyme that include Bartonella, Babesia, Chlamydia Pneumonia and I think a few others. She tested positive for the Bartonella and the CP. Apparently the ticks that carry Lyme often also carry these things and since Lyme is so difficult to diagnose for find, that when you have any of these common co-infections, then is more likely that you have a Lyme infection also.
For those of you that don't know, a "clinical diagnosis" is a diagnosis that takes into account symptoms and other factors vs. just pure test results. The other diagnosis, I believe is called a definitive diagnosis and one that is in direct/pure compliance to CDC or FDA standards based on lab results. So, a clinical diagnosis gives Doctors a much greater ability to treat diseases because they don't have to comply to the stricter guidelines and can sort of "self interpret" your condition according to their own thoughts and historical findings.
I've said it plenty of times and I doubt that most doctors disagree with me. They are definitely practicing on you, especially in a case like this where there is no known cure or really any decent treatment. Medicine has come a long way in terms of treating things that they have "figured out" but in this realm that we are in, I would say that nobody has "gone pro."
Going back a bit to a whole saga that preceded the Connecticut trip and bolstered our view that Lyme was the culprit in Heidi's case. H had heard of a "live blood" analysis where someone takes a powerful microscope and looks at your blood immediately when it is alive and over a period of time searching for spirochetes that are the actual Lyme bacteria in your blood. This is one of the highly questionable tests for Lyme that I would warn you about if you are reading this for the purposes of figuring out your own situation.
We went to a clinic in Florence CO, where they practice homeopathy, naturopathy, massage, acupuncture and seemingly all manner of "fringe medicine" which are interesting to say the least. Some of this medicine has been practiced for much longer than "western medicine" and certainly has helped lots of people over the years.
In my opinion, a lot of it has to do with the healing power of the mind and a belief that something is helping and therefore it does. The key there is that you have to believe. In science, this is known as the placebo effect, and is well documented. I'm sure that there are also lots of naturally remedies that work, primarily because a lot of prescription medicine are either based on are are made up of refined natural materials that come from plants and animals from around the globe. Natural "supplements" can actually be very powerful medicines that are not only real, but can be really dangerous if they are not respected and taken carefully.
When I say "warn about" I mean that this test specifically put us on a track that we were pretty sure that H had a Lyme infection and went as hard as we could after it. The problem is that they are looking for spirochetes and mis-identifying them as "squiggly things" that come out of your red blood cells (RBC's) as they are dying. We got a recording of this activity and sent it off to a few people to look at. One Hematologist in England disagreed and identified that the "squiggly things" were not spirochetes but rather fibers that RBC's send out when they are dying as part of a natural clotting mechanism where the fibers are essentially reaching out to other cells so they can combine together and clot effectively. It is fascinating to see this happening, but it is more of a science show than a diagnostic indicator of Lyme disease.
In any case, they drew our blood and then looked at it live, and again periodically over the next four hours as the blood cells died. One thing that is valuable about this test is that they also look in your blood for clues to various conditions, by observing sizes, shapes and numbers of various blood cells as well as anything else floating (or swimming as the case might be) around in your plasma.
Specifically, if they know what they are looking for, they can identify digestive problems, infections, heavy metals, and probably several other things. The key here is that they really need to know what they are looking for. Timing is probably critical, and people's blood certainly coagulates at different rates, etc. Either way from what we were told and from the research we found "on the web" it seemed like the blood we saw on the recordings had issues, and Heidi's blood seemed to have more of these "squiggly things" than mine did. This is one of the primary reasons that we went out to CT to see Dr. Phillips after a referral from a friend of my mom's that said he was open to alternative ideas about Lyme and had helped several people, primarily with MS symptoms "get out of wheelchairs" after treating them for a chronic lyme disease infection.
During the trip to CT, we spent a night in NYC at some friends house (Thanks again J&B) and also caught up with another friend and then some of H's family in CT. A great dinner with good friends in Harlem, a chance to spend quality time with friends, a dinner with cousins rarely seen, a walk in the beautiful, crazy busy city. These are the times you have to appreciate, even if you don't know that time is short. It's almost like you should live your life KNOWING time is short and giving each day a chance to prove you wrong. Though we were on a trip with medical agendas and consequences, enjoy we did.
You sort of measure the progression of this disease in terms of "things you can't do that you previously could, or things that you have to do that you never used to." In this category, we went to MOMA in Manhattan to see a cool exhibit and needed to check out a wheelchair for H about half way our walk around the museum. This was one of those depressing and distressing moments because she just got to a point where she could not walk around any more in the museum. It wasn't like we could make it back to the car or anything...we just needed a wheelchair and that was that. Luckily for us, they have them available for use there and it was not a problem to secure one. It was just kinda scary.
That's it for now...
What's next: The first Hawaii trip...a little lightness vs this medical stuff.
In addition to the clinical diagnosis of Lyme, Dr. Phillips also tested for "co-infections" to lyme that include Bartonella, Babesia, Chlamydia Pneumonia and I think a few others. She tested positive for the Bartonella and the CP. Apparently the ticks that carry Lyme often also carry these things and since Lyme is so difficult to diagnose for find, that when you have any of these common co-infections, then is more likely that you have a Lyme infection also.
For those of you that don't know, a "clinical diagnosis" is a diagnosis that takes into account symptoms and other factors vs. just pure test results. The other diagnosis, I believe is called a definitive diagnosis and one that is in direct/pure compliance to CDC or FDA standards based on lab results. So, a clinical diagnosis gives Doctors a much greater ability to treat diseases because they don't have to comply to the stricter guidelines and can sort of "self interpret" your condition according to their own thoughts and historical findings.
I've said it plenty of times and I doubt that most doctors disagree with me. They are definitely practicing on you, especially in a case like this where there is no known cure or really any decent treatment. Medicine has come a long way in terms of treating things that they have "figured out" but in this realm that we are in, I would say that nobody has "gone pro."
Going back a bit to a whole saga that preceded the Connecticut trip and bolstered our view that Lyme was the culprit in Heidi's case. H had heard of a "live blood" analysis where someone takes a powerful microscope and looks at your blood immediately when it is alive and over a period of time searching for spirochetes that are the actual Lyme bacteria in your blood. This is one of the highly questionable tests for Lyme that I would warn you about if you are reading this for the purposes of figuring out your own situation.
We went to a clinic in Florence CO, where they practice homeopathy, naturopathy, massage, acupuncture and seemingly all manner of "fringe medicine" which are interesting to say the least. Some of this medicine has been practiced for much longer than "western medicine" and certainly has helped lots of people over the years.
In my opinion, a lot of it has to do with the healing power of the mind and a belief that something is helping and therefore it does. The key there is that you have to believe. In science, this is known as the placebo effect, and is well documented. I'm sure that there are also lots of naturally remedies that work, primarily because a lot of prescription medicine are either based on are are made up of refined natural materials that come from plants and animals from around the globe. Natural "supplements" can actually be very powerful medicines that are not only real, but can be really dangerous if they are not respected and taken carefully.
When I say "warn about" I mean that this test specifically put us on a track that we were pretty sure that H had a Lyme infection and went as hard as we could after it. The problem is that they are looking for spirochetes and mis-identifying them as "squiggly things" that come out of your red blood cells (RBC's) as they are dying. We got a recording of this activity and sent it off to a few people to look at. One Hematologist in England disagreed and identified that the "squiggly things" were not spirochetes but rather fibers that RBC's send out when they are dying as part of a natural clotting mechanism where the fibers are essentially reaching out to other cells so they can combine together and clot effectively. It is fascinating to see this happening, but it is more of a science show than a diagnostic indicator of Lyme disease.
In any case, they drew our blood and then looked at it live, and again periodically over the next four hours as the blood cells died. One thing that is valuable about this test is that they also look in your blood for clues to various conditions, by observing sizes, shapes and numbers of various blood cells as well as anything else floating (or swimming as the case might be) around in your plasma.
Specifically, if they know what they are looking for, they can identify digestive problems, infections, heavy metals, and probably several other things. The key here is that they really need to know what they are looking for. Timing is probably critical, and people's blood certainly coagulates at different rates, etc. Either way from what we were told and from the research we found "on the web" it seemed like the blood we saw on the recordings had issues, and Heidi's blood seemed to have more of these "squiggly things" than mine did. This is one of the primary reasons that we went out to CT to see Dr. Phillips after a referral from a friend of my mom's that said he was open to alternative ideas about Lyme and had helped several people, primarily with MS symptoms "get out of wheelchairs" after treating them for a chronic lyme disease infection.
During the trip to CT, we spent a night in NYC at some friends house (Thanks again J&B) and also caught up with another friend and then some of H's family in CT. A great dinner with good friends in Harlem, a chance to spend quality time with friends, a dinner with cousins rarely seen, a walk in the beautiful, crazy busy city. These are the times you have to appreciate, even if you don't know that time is short. It's almost like you should live your life KNOWING time is short and giving each day a chance to prove you wrong. Though we were on a trip with medical agendas and consequences, enjoy we did.
You sort of measure the progression of this disease in terms of "things you can't do that you previously could, or things that you have to do that you never used to." In this category, we went to MOMA in Manhattan to see a cool exhibit and needed to check out a wheelchair for H about half way our walk around the museum. This was one of those depressing and distressing moments because she just got to a point where she could not walk around any more in the museum. It wasn't like we could make it back to the car or anything...we just needed a wheelchair and that was that. Luckily for us, they have them available for use there and it was not a problem to secure one. It was just kinda scary.
That's it for now...
What's next: The first Hawaii trip...a little lightness vs this medical stuff.
Subscribe to:
Posts (Atom)
