A Memorial Service for Karen Mauthe was held last Thursday, October 14th, 2010 at OddFellows Hall in Santa Fe, NM. More than 115 family and friends were in attendance to celebrate Karen's life.. The service included a mixture of family and friends telling stories about Karen and her life. Both funny and heartfelt, these stories, and the people who told them, captured Karen's spirit for all of us. The "Your Song Threshold Choir" gave both a beautiful and moving performance of music that Karen would have been thrilled to hear. Indeed, it felt as if Karen's spirit was with us all last Thursday in OddFellows Hall.
Karen's mother Fran Sanders and the rest of Karen's family, would especially like to thank all of Karen's friends that helped make this glorious Memorial Service for Karen a reality.
PEACE
Saturday, October 16, 2010
Sunday, October 10, 2010
KAREN MAUTHE PASSED AWAY
Karen passed away at 4:20 a.m. on Friday, October 8, 2010 at Christus St. Vincent Hospital in Santa Fe, New Mexico. She died from complications due to a systemic infection caused by Severe Aplastic Anemia. She approached the study and treatment of her disease with the same intensity she applied to her yoga practice and teaching. She gave it her all.
There will be a memorial service on Thursday, October 14 at 5:00 p.m. at the Odd Fellows Hall, 1125 Cerrillos Road, where Karen’s Yoga Different classes were held.
In lieu of flowers, the family requests donations be made to Coming Home Connection, the organization that cared for Karen in the last few months of her life.
Coming Home Connection
418 Cerrillos Road, Suite 27
Santa Fe, NM 87501
For further information, contact her mother, Fran Sanders, at 505 473-5117.
Tuesday, October 5, 2010
the chamber
it was marginally successful today. being a good student, I read all the literature before I sh0wed up for my first hyperbolic chamber session. no aspirin; no vitamin c; no creams of any kind. it just so happened that the new fissure on my butthole is raw and excruciating. so there i was in the plastic tube, yawning and blowfishing, my way through the pressure increasing and my butthole is dancing the dance of "there is no comfort." then all of a sudden, the caustophobis sets in. long story short: i stayed at low pressure for about 1/2 the time i was supposed to be in the chamber. all i could think about was a hot bath (relief for the piles). but boy was that bath good.
so i'll try again tomorrow.
so i'll try again tomorrow.
Saturday, October 2, 2010
take my hand
just when you think that there are so many insurmountable obstacles that you're not sure you can go on, a small beacon of light shows up and hope springs eternal one more time
i went to the wound center this morning for my weekly check up. My doctor and the"powers that be" in the hospital decided that they would let me have a session (30 days!) in the hyperbolic chamber....free of charge. I cried. My insurance company was never gonna approve it.
I must admit that I'm hoping for miracles. My own tube of pressurized oxygen 5 days a week for 6 weeks. It is said to cure all sorts of issues including infections, lupis, ms, etc. etc. There is some (not much) evidence that it can stimulate stem cell production (this is what I need). If it does nothing but clear up my infections, I will be eternally grateful.
What this means is I'm gonna need rides to and from the hospital Monday-Friday. I must arrive there by 12pm and leave around 2:30pm. Maybe you all could sign up on the calendar if you can help? I should know more once we get going next week.
Blessings.
K
i went to the wound center this morning for my weekly check up. My doctor and the"powers that be" in the hospital decided that they would let me have a session (30 days!) in the hyperbolic chamber....free of charge. I cried. My insurance company was never gonna approve it.
I must admit that I'm hoping for miracles. My own tube of pressurized oxygen 5 days a week for 6 weeks. It is said to cure all sorts of issues including infections, lupis, ms, etc. etc. There is some (not much) evidence that it can stimulate stem cell production (this is what I need). If it does nothing but clear up my infections, I will be eternally grateful.
What this means is I'm gonna need rides to and from the hospital Monday-Friday. I must arrive there by 12pm and leave around 2:30pm. Maybe you all could sign up on the calendar if you can help? I should know more once we get going next week.
Blessings.
K
Wednesday, September 29, 2010
hospital
i just spent three nights at st vincent's hospital. at least they gave me the nice room this time...double doors so as to reduce the staff giggles and the poor man across the hall two days of incessant screaming. It's very unnerving to hear someone yell like that non-stop. Luckily, it wasn't very noticeable in my double-doored room. Apparently, he was an old man who kept pulling out his IV's so they finally strapped him down and well, understandably, he wasn't happy about the situation AT ALL. Can't say I blame him. It brings up all sorts of questions of patient's rights that I tried not to ponder too much, which in the end isn't too hard when your busy sponge bathing yourself against a fever of 103.2.
Yup. That temperature is what landed me in the hospital and quite honestly, I probably should have gone in five or six days earlier when the fevers started but, well, with features like screaming neighbors, blood draws at all hours of the day and night, etc, etc, St. Vincent's doesn't quite have the allure of say, the Ritz. However, I am feeling somewhat better and maybe next time I'll recall this as I ponder my options. Or better yet, maybe there need not be a next time.
Some of you kindly wrote your favorite remedies for constipation--many of which I have tried--and I thank you for taking the time to share. I realized that my bowel movements seem to ebb and flow of the antibiotics. Change the antibiotic, change the bowel movements. This is somewhat comforting because I was really beginning to wonder if my organic body was beginning to shut down from lack of movement. After the last few days, I'm not worried about "movement" anymore...now the issue is "soreness" and dehydration. Ahh, the fun.
I'm glad to be home that's for sure.
Yup. That temperature is what landed me in the hospital and quite honestly, I probably should have gone in five or six days earlier when the fevers started but, well, with features like screaming neighbors, blood draws at all hours of the day and night, etc, etc, St. Vincent's doesn't quite have the allure of say, the Ritz. However, I am feeling somewhat better and maybe next time I'll recall this as I ponder my options. Or better yet, maybe there need not be a next time.
Some of you kindly wrote your favorite remedies for constipation--many of which I have tried--and I thank you for taking the time to share. I realized that my bowel movements seem to ebb and flow of the antibiotics. Change the antibiotic, change the bowel movements. This is somewhat comforting because I was really beginning to wonder if my organic body was beginning to shut down from lack of movement. After the last few days, I'm not worried about "movement" anymore...now the issue is "soreness" and dehydration. Ahh, the fun.
I'm glad to be home that's for sure.
Saturday, September 25, 2010
busy dr week
wound dr today: short story--armpit better, butt no change (and ugly)
reality: fevers of 102.5-103.2 for the last few days. they said if they continue i will have to be admitted
platelets today
blood tomorrow (lunch anyone? call me?)
inquiry: i've been constipated for 3 days. tried triphala, prunes, and my butt smells like a dead cat (not a good sign at all) anyone got the "this'll work in a flash" trick. email me at fieldofcosmos@gmail.com
reality: fevers of 102.5-103.2 for the last few days. they said if they continue i will have to be admitted
platelets today
blood tomorrow (lunch anyone? call me?)
inquiry: i've been constipated for 3 days. tried triphala, prunes, and my butt smells like a dead cat (not a good sign at all) anyone got the "this'll work in a flash" trick. email me at fieldofcosmos@gmail.com
Thursday, September 23, 2010
miki the amazing japanese shiatsu practioner
in japan, one has to go to acupuncture and shiatsu school for three years to qualify for a license.
remember that book/movie "memoirs of a geisha"? how the young women were pure, gentle, yet firm and graceful. (forget about the sex part please)
combine over 8 years of expertise and the lovely strong energy of an exquisite Japanese woman (who just moved here with her husband Ted) and you get Miki.
She has kindly offered me sessions over the summer (so yes this is a commercial break). if you are interested in hearing what she offers, please contact her at 505.946.8493 or matsumiki@hotmail.com.
she's wonderful.
remember that book/movie "memoirs of a geisha"? how the young women were pure, gentle, yet firm and graceful. (forget about the sex part please)
combine over 8 years of expertise and the lovely strong energy of an exquisite Japanese woman (who just moved here with her husband Ted) and you get Miki.
She has kindly offered me sessions over the summer (so yes this is a commercial break). if you are interested in hearing what she offers, please contact her at 505.946.8493 or matsumiki@hotmail.com.
she's wonderful.
rain
i listen to the rain while my sunflowers hang their heads in harvest. the birds have been frequently checking then devouring the ripe ones.
i knit and then reknit a hat for a friend which i hope will fit her. its too soon to tell. although im on version 7 already.
my wounds are perhaps slowly improving though they bother me with their ouch constantly.
i can imagine the aspen trees beginning to turn on the mountain, my favorite time of year in nm.
one day at a time (as the taxman lingers in the shadows)
i knit and then reknit a hat for a friend which i hope will fit her. its too soon to tell. although im on version 7 already.
my wounds are perhaps slowly improving though they bother me with their ouch constantly.
i can imagine the aspen trees beginning to turn on the mountain, my favorite time of year in nm.
one day at a time (as the taxman lingers in the shadows)
Monday, September 20, 2010
if it's not one thing....
it's another
so some of you may have noticed that i've been indulging in the end of summer fruits as of late....i seem to have a never ending craving for pineapple....
well the fun is over (ie don't bring me anymore fruit please). i have a new outbreak/infection of some kind down below in a very suspicious location reminiscent of earlier summer infections. So I am not allowed sugar. Again. For all those that think I'm just being picky, well, when I let up this is what happens. My true hope is that it will vanish by morning, but I'm gonna talk to the dr. nonetheless.
So enjoy your sweet root vegetables and yummie fruits and I will give away what I have and dream of the day that I might be able to eat these things again.
Grains and greens and protein. That's my diet, if you are interested. Love and light. k
so some of you may have noticed that i've been indulging in the end of summer fruits as of late....i seem to have a never ending craving for pineapple....
well the fun is over (ie don't bring me anymore fruit please). i have a new outbreak/infection of some kind down below in a very suspicious location reminiscent of earlier summer infections. So I am not allowed sugar. Again. For all those that think I'm just being picky, well, when I let up this is what happens. My true hope is that it will vanish by morning, but I'm gonna talk to the dr. nonetheless.
So enjoy your sweet root vegetables and yummie fruits and I will give away what I have and dream of the day that I might be able to eat these things again.
Grains and greens and protein. That's my diet, if you are interested. Love and light. k
Saturday, September 18, 2010
No help Today (Saturday)
Apparently I have no helpers from coming home connection until 4 pm today. Let's face it--I'm already hungry.
If you have some time, call me and maybe you can come over and help......
karen
690-1021
If you have some time, call me and maybe you can come over and help......
karen
690-1021
Friday, September 17, 2010
a cleaning dilemna
so over the summer someone kindly sent their housekeeper over to deep clean my place every now and again. it was wonderful.
the number one rule of aplastic anemia is keeping things clean, really really really clean: house, food, etc. I am so prone to infection and have been down and out with infections all summer.
my helpers from coming home connection kindly sweep the floors, wash the dishes, do the laundry and manage the bathroom. they do a great job. but it's hardly a deep clean. the floors have not been washed in over a month.
there is no way i can afford a housecleaner. point blank. nor can i or should i do it myself. yet, i hate to live this way.
so i guess i'm asking for volunteers who can spare an hour or two or whatever to help tidy things up. you could sign up on the calendar like old days. i have vinegar, baking soda and sponges. sadly i do not have a vacuum. please help if you can.
love and light.
k
the number one rule of aplastic anemia is keeping things clean, really really really clean: house, food, etc. I am so prone to infection and have been down and out with infections all summer.
my helpers from coming home connection kindly sweep the floors, wash the dishes, do the laundry and manage the bathroom. they do a great job. but it's hardly a deep clean. the floors have not been washed in over a month.
there is no way i can afford a housecleaner. point blank. nor can i or should i do it myself. yet, i hate to live this way.
so i guess i'm asking for volunteers who can spare an hour or two or whatever to help tidy things up. you could sign up on the calendar like old days. i have vinegar, baking soda and sponges. sadly i do not have a vacuum. please help if you can.
love and light.
k
Tuesday, September 14, 2010
revolving everything
revolving dr. today (dr. scott temperly who was my first dr when I got back from Seattle). She sits down next to me and asks "what is the goal here?" "To beat it" I said. "didn't you read the book I gave you?"
(aplasticcentral.com). She said she skimmed it. That was all she had to say.
thanks to emily, the sept and oct calendars are up and running. i need a ride from the hospital at some time in the evening on Wed pm (this week, not sure on time due to transfustions) and i need someone to take me to dr appt fri (this week) at 2:30-4.
any takers?
(aplasticcentral.com). She said she skimmed it. That was all she had to say.
thanks to emily, the sept and oct calendars are up and running. i need a ride from the hospital at some time in the evening on Wed pm (this week, not sure on time due to transfustions) and i need someone to take me to dr appt fri (this week) at 2:30-4.
any takers?
Monday, September 13, 2010
z update for z day
dr appt this am. hemoglobin 7 (think dizzy and hard to breathe) and platelets 15!
so today would be day 5 on the platelet schedule....i'll get blood and platelets on wed....ie platelets are holding a little bit better, a little longer.
still it ain't anywhere near the 150 platelet or the 15 hemogloblin minimum they consider "normal"
but i'm happy to take it. maybe next week it'll be 8 days between platelet transfusions. then we'd really have something to write home about.
so today would be day 5 on the platelet schedule....i'll get blood and platelets on wed....ie platelets are holding a little bit better, a little longer.
still it ain't anywhere near the 150 platelet or the 15 hemogloblin minimum they consider "normal"
but i'm happy to take it. maybe next week it'll be 8 days between platelet transfusions. then we'd really have something to write home about.
Saturday, September 11, 2010
new horizons
it was a busy week. dr appt and platelet transfusion on Thursday. wound dr. appt on friday where he "removed" all the dead tissue around the would. think small metal tool like an ice cream scoop, i forget the name of it. think ouch. but the dr. assures me that the new flesh will now grow in better--even though it looks worse. of course, i haven't actually been brave enough to take a look yet. that might have to change this afternoon when I have to redo the dressing. ug.
in the meantime, i've decided to knit again. a good time-consuming practice that encourages all of my obsessive tendencies and great meditations. i become a bit obsessed with those there knitting needles. not that i have any real talent or knowledge....i was looking up recipes for some fancy hats yesterday and realized that i am not at all versed in the language of knitting nor does my skill set extend much beyond k1,p1. maybe i'll decide to learn someday but for now, all i want to do is knit me a new winter cap. it is, after all, starting to get cold out there. i'll let you know how it goes. last time i knit a hat, i had to knit and then reknit the hat about 5 times before i got the size right (ie a very long project indeed). if anyone out there knows a good way of telling how many stitched to cast on to get an appropriately sized hat, please let me know.
in the meantime, i've decided to knit again. a good time-consuming practice that encourages all of my obsessive tendencies and great meditations. i become a bit obsessed with those there knitting needles. not that i have any real talent or knowledge....i was looking up recipes for some fancy hats yesterday and realized that i am not at all versed in the language of knitting nor does my skill set extend much beyond k1,p1. maybe i'll decide to learn someday but for now, all i want to do is knit me a new winter cap. it is, after all, starting to get cold out there. i'll let you know how it goes. last time i knit a hat, i had to knit and then reknit the hat about 5 times before i got the size right (ie a very long project indeed). if anyone out there knows a good way of telling how many stitched to cast on to get an appropriately sized hat, please let me know.
Wednesday, September 8, 2010
wounds
i woke up at 4 am with shooting pain in my swollen lymph node under my armpit which had decided to break and pus up and scab over the weekend. the armpit situation got progressively worse over the weekend. i even rang the emergency room at the hospital to see how busy they were...and of course being on hold for 30 minutes quickly answered my suspicion: avoid the hospital over labor day weekend at all costs.
i took an early morning bath while my very sweet helper dragged himself outta bed to change my bedding. From a conversation I had yesterday, i've re-fallen in love with the idea of grapefruit seed extract as a fantastic antibiotic so my bright early morning idea was that I would spread the stuff all over my wounds. I even did it IN the bathtub to test to see if I would be okay (the theory being that I would wash it off immediately if it wasn't). everything seemed to be okay. I dried off and dragged myself to my happy fresh bed. being the extremist i tend to be, i added a little more grapefruit seed extract for good measure--after all, if a little bit works, more will work better, right?
WRONG. within ten minutes both the cellulitis leg and the armpit sore were red and itchy. unbearably itchy. so itchy that i took another bath. now one of my usual treatments is a goldenseal paste that cools my owwies. so i applied the paste, gauzed it up, and turned the lights out in hopes of getting a few more hours sleep. OMG. Lemme tell you. within a few minutes, the leg and armpit were screaming itch and I, the "I don't like to take drugs" girl, was hastily swallowing one benedryl whilst seriously wondering how many I could take at once without death. luckily 15 minutes later, the itch subsided enough that the drowsiness took over and I fell back asleep. Whew. close call.
luckily, i had a dr. appointment early this morning. the good news is my platelet count wasn't too bad...probably will need transfusion Thursday or Friday but that is a slight improvement over my usual five day average. the doctors both squeamishly looked at my sores and I suggested that perhaps I could go to the Wound Center. One doctor suggested Dr. Lindsey at the center.
Praise Jah! Dr. Lindsey was the first doctor who actually really took an interest in my situation, bless his heart. We ended up draining--scapel and all--the armpit wound in hopes that this will heal faster. No baths. Wish me luck.
i took an early morning bath while my very sweet helper dragged himself outta bed to change my bedding. From a conversation I had yesterday, i've re-fallen in love with the idea of grapefruit seed extract as a fantastic antibiotic so my bright early morning idea was that I would spread the stuff all over my wounds. I even did it IN the bathtub to test to see if I would be okay (the theory being that I would wash it off immediately if it wasn't). everything seemed to be okay. I dried off and dragged myself to my happy fresh bed. being the extremist i tend to be, i added a little more grapefruit seed extract for good measure--after all, if a little bit works, more will work better, right?
WRONG. within ten minutes both the cellulitis leg and the armpit sore were red and itchy. unbearably itchy. so itchy that i took another bath. now one of my usual treatments is a goldenseal paste that cools my owwies. so i applied the paste, gauzed it up, and turned the lights out in hopes of getting a few more hours sleep. OMG. Lemme tell you. within a few minutes, the leg and armpit were screaming itch and I, the "I don't like to take drugs" girl, was hastily swallowing one benedryl whilst seriously wondering how many I could take at once without death. luckily 15 minutes later, the itch subsided enough that the drowsiness took over and I fell back asleep. Whew. close call.
luckily, i had a dr. appointment early this morning. the good news is my platelet count wasn't too bad...probably will need transfusion Thursday or Friday but that is a slight improvement over my usual five day average. the doctors both squeamishly looked at my sores and I suggested that perhaps I could go to the Wound Center. One doctor suggested Dr. Lindsey at the center.
Praise Jah! Dr. Lindsey was the first doctor who actually really took an interest in my situation, bless his heart. We ended up draining--scapel and all--the armpit wound in hopes that this will heal faster. No baths. Wish me luck.
Monday, September 6, 2010
sunflowers
when i moved in in the beginning of august they were giant happy sunflowers smiling at me through my bedroom window.
now they hang their heads heavy with seed, a few remaining yellow petals drift slowly to the ground as if to say i'm thirsty.
sadly my neighbors whose property they live on rarely water them and they sky has been dry for weeks.
i am waiting for the birds to come and feast on their seeds when ripened. soon. very soon.
now they hang their heads heavy with seed, a few remaining yellow petals drift slowly to the ground as if to say i'm thirsty.
sadly my neighbors whose property they live on rarely water them and they sky has been dry for weeks.
i am waiting for the birds to come and feast on their seeds when ripened. soon. very soon.
Friday, September 3, 2010
SOMETHING AMAZING
http://www.wimp.com/merenguedog/
I'm on different antibiotics since my visit to yet another doctor yesterday, but these ones appear to be working. The leg (and consequently my outlook) is much better. A small bump in the road......
I'm on different antibiotics since my visit to yet another doctor yesterday, but these ones appear to be working. The leg (and consequently my outlook) is much better. A small bump in the road......
Wednesday, September 1, 2010
backsliding
it all happened at once. i was feeling better then i was not. the fevers started yesterday afternoon just as i was considering going outside for the first time in a month, wondering if i could navigate the house stairs (which might as well be bars), praying that the sun might last long enough that I could see it.
the culminated efforts of fighting against constipation resulted in the opposite...the runs. At that precise moment the cellulitis on my leg decided to kick in full throttle, thus making running (or walking even) impossible. I called the on-call dr last night, he prescribed a new antibiotic (with added bonus of side effect: the runs). While I hate to be on it, the pain and fear of the intense pain previously experienced with full throttle cellulitis inspired consumption. it was a good choice, leg still hurts alot this morning but at least i can get to the bathroom.
and now i'm going to b bad and eat gluten and sugar in the form of an apple tart from sage bakery. sometimes a persons gotta go wild (lets just hope the candida doesnt)
the culminated efforts of fighting against constipation resulted in the opposite...the runs. At that precise moment the cellulitis on my leg decided to kick in full throttle, thus making running (or walking even) impossible. I called the on-call dr last night, he prescribed a new antibiotic (with added bonus of side effect: the runs). While I hate to be on it, the pain and fear of the intense pain previously experienced with full throttle cellulitis inspired consumption. it was a good choice, leg still hurts alot this morning but at least i can get to the bathroom.
and now i'm going to b bad and eat gluten and sugar in the form of an apple tart from sage bakery. sometimes a persons gotta go wild (lets just hope the candida doesnt)
Tuesday, August 31, 2010
my food reality
the coming home foundation has literally been a life-saver providing me with 24/7 help. the nurses and caretakers have been fabulous.
it would seem that they are also extremely busy right now with many patients needing care and are having a difficult time staffing. if you need work, you might consider calling Glennys at 988-2466. I believe they may be hiring and then you could get paid to hang out with me!
since i'm feeling a bit better than before, they asked me if I would be able to have a few breaks from help during my day. so long as it's only a couple of hours, I said, that would be fine.
well reality has it that there are sometimes large blocks of time (7 hours the other day!) often during mealtimes that I do not have help. this is a huge bummer. and often times I don't know when help will be arriving ie what time. this is especially inconvenient during dinner hour. i can walk to the frig with a tremendous amount of effort, but making anything beyond toast is not an option for me at this time. it simply hurts too much.
so i guess the point of this blog is that....if you might be available to help out with dinners for an hour or two occasionally that would be fantastic. i generally have loads of food here but pickup is also an option. let's face it: at 89 lbs I can't afford to miss too many meals. Or if you need a job, call them.
coming home is surely doing the best they can and i am eternally grateful for the help. the gaps are the problem
thanks. love you all.
karen
it would seem that they are also extremely busy right now with many patients needing care and are having a difficult time staffing. if you need work, you might consider calling Glennys at 988-2466. I believe they may be hiring and then you could get paid to hang out with me!
since i'm feeling a bit better than before, they asked me if I would be able to have a few breaks from help during my day. so long as it's only a couple of hours, I said, that would be fine.
well reality has it that there are sometimes large blocks of time (7 hours the other day!) often during mealtimes that I do not have help. this is a huge bummer. and often times I don't know when help will be arriving ie what time. this is especially inconvenient during dinner hour. i can walk to the frig with a tremendous amount of effort, but making anything beyond toast is not an option for me at this time. it simply hurts too much.
so i guess the point of this blog is that....if you might be available to help out with dinners for an hour or two occasionally that would be fantastic. i generally have loads of food here but pickup is also an option. let's face it: at 89 lbs I can't afford to miss too many meals. Or if you need a job, call them.
coming home is surely doing the best they can and i am eternally grateful for the help. the gaps are the problem
thanks. love you all.
karen
Friday, August 27, 2010
product review
first there was colon tone. then there was what my friend termed "colon blow." Magnesium oxide compounds with a healthy dose of vitamin C and a apple cider vinegar chaser. Oh the cocktails one will try when necessity calls.....
I've spent alot of time in supported halasana (upside down for those non-yogis) to try to get things moving.
The truth of the matter: when there's fire in the hole (or this case piles), the system simply shuts down and backs up.
I've spent alot of time in supported halasana (upside down for those non-yogis) to try to get things moving.
The truth of the matter: when there's fire in the hole (or this case piles), the system simply shuts down and backs up.
Thursday, August 26, 2010
mercury
woke up every hour last night with a mouth full of blood. its more emotionally disturbing than anything. i can deal with the grossness of it. it's the reality check that platelets aren't holding yet and this is the real deal....just in case i had persuaded myself otherwise.
called the dr. this 7 am to order platelets for today instead of tomorrow, happened to be my dr on call, he apologized fir not telling me he was leaving for a month after i mentioned that i didn't dig the revolving dr thng. got platelets in sparkly new private room at outpatient services, which is now open on weekends. so we can hopefully leave 2200 west behind forever. this is great news. clean, sparkly, new versus old, filthy and well what can I say, tainted with bad memories.
while transfusing, i got text saying power at house turned off by pnm. i arrive home, cell phone arrives, can't charge it cuz no power. mercury retrograde. ug
good news: with faxed dr note they turned power back on. whew.
exhausted from last night and hospital trip. love u all.
called the dr. this 7 am to order platelets for today instead of tomorrow, happened to be my dr on call, he apologized fir not telling me he was leaving for a month after i mentioned that i didn't dig the revolving dr thng. got platelets in sparkly new private room at outpatient services, which is now open on weekends. so we can hopefully leave 2200 west behind forever. this is great news. clean, sparkly, new versus old, filthy and well what can I say, tainted with bad memories.
while transfusing, i got text saying power at house turned off by pnm. i arrive home, cell phone arrives, can't charge it cuz no power. mercury retrograde. ug
good news: with faxed dr note they turned power back on. whew.
exhausted from last night and hospital trip. love u all.
Wednesday, August 25, 2010
The Void
Is anybody out there reading this? While my own personal attendance to the blog was pretty spotty in July, I'm beginning to feel like I'm writing to the Void. Not that it really matters, but every now and again I wonder.
Dr Update: The two week shot did exactly Nada, though the Dr. agrees that I am more or less stable. We will see what happens when I stop the antibiotics in two days. Fingers crossed that I can hold my own because I am now 1000% certain that my hemorrhoids, which have sadly decided to blossom as of late, are most definitely an adverse reaction to the antibiotics. Being an extremely sensitive and bodily aware person, I can feel them growing as the iv enters my arm. Of course, the Dr. believes this is absolutely impossible. I'd like to teach him yoga someday.
Now. Here's the catch. He casually mentions today that he'll be out of the office on Friday and he'd like me to see Dr. so-and-so instead (here we go---my favorite game: the revolving doctor game). As we are driving back from the clinic, it occurs to me that the last time he said he was going to be away on a Friday, he went on vacation for two weeks. So I called the scheduling girls back and asked how long he was going to be away only to be told 3-4 weeks!!!
WHAT? At least the fellow could have told me that. At least he could have asked if there was another doctor with whom I would prefer to work with instead of slepping me off to the nearest one to his office...or however he chose it. Where has common courtesy gone? Where is the communication. Mercury retrograde? It simply slipped his mind? Or was it a planned conspiracy?
So I called the office for the umpteenth time, talked with his assistant (who didn't know he was leaving at all) and some other person who seemed to have slightly more concern about the situation. At the very least, it would seem like I should get an email to contact him if something comes up. I keep having to explain the wife swapping scenario to these people---you might like someone else's wife better but it could just as easily end up ugly.
I'm not really interested in a flurry of comments and emails saying "accept" the situation. I accept it. I'm not angry. I am astonished.
As a nation, are we so harried and rushed that even our most basic services, and in my case life-saving services, suffer from lack of communication? It has been called the Era of Communication. We have more ways of communicating to anywhere across the world in an instant than ever before, yet are we too busy texting someone about something trivial to have common courtesy to the people surrounding us in the present? That perhaps, I have to beg to be able to wrestle an email address or phone number of my primary doctor when my life is on the line??
It seems incredulous.
Dr Update: The two week shot did exactly Nada, though the Dr. agrees that I am more or less stable. We will see what happens when I stop the antibiotics in two days. Fingers crossed that I can hold my own because I am now 1000% certain that my hemorrhoids, which have sadly decided to blossom as of late, are most definitely an adverse reaction to the antibiotics. Being an extremely sensitive and bodily aware person, I can feel them growing as the iv enters my arm. Of course, the Dr. believes this is absolutely impossible. I'd like to teach him yoga someday.
Now. Here's the catch. He casually mentions today that he'll be out of the office on Friday and he'd like me to see Dr. so-and-so instead (here we go---my favorite game: the revolving doctor game). As we are driving back from the clinic, it occurs to me that the last time he said he was going to be away on a Friday, he went on vacation for two weeks. So I called the scheduling girls back and asked how long he was going to be away only to be told 3-4 weeks!!!
WHAT? At least the fellow could have told me that. At least he could have asked if there was another doctor with whom I would prefer to work with instead of slepping me off to the nearest one to his office...or however he chose it. Where has common courtesy gone? Where is the communication. Mercury retrograde? It simply slipped his mind? Or was it a planned conspiracy?
So I called the office for the umpteenth time, talked with his assistant (who didn't know he was leaving at all) and some other person who seemed to have slightly more concern about the situation. At the very least, it would seem like I should get an email to contact him if something comes up. I keep having to explain the wife swapping scenario to these people---you might like someone else's wife better but it could just as easily end up ugly.
I'm not really interested in a flurry of comments and emails saying "accept" the situation. I accept it. I'm not angry. I am astonished.
As a nation, are we so harried and rushed that even our most basic services, and in my case life-saving services, suffer from lack of communication? It has been called the Era of Communication. We have more ways of communicating to anywhere across the world in an instant than ever before, yet are we too busy texting someone about something trivial to have common courtesy to the people surrounding us in the present? That perhaps, I have to beg to be able to wrestle an email address or phone number of my primary doctor when my life is on the line??
It seems incredulous.
Tuesday, August 24, 2010
New Cell Phone On It's Way
Ok. Apparently even people in New York are mentioning how annoying it is that I don't have a cell phone that works. I really do have legitimate excuses for this lack of communication ability and I am doing my best to rectify the situation.
First and foremost, apparently my MERCURY is ALWAYS in retrograde. For those of you that have known me for any length of time, you must agree that I periodically have electronic meltdowns usually during a regular ole Mercury retrograde that are darn near unbelievable. I have a new mantra that I get to recite every Tuesday morning to rectify my Mercury. With God's speed, I hope.
Recent history in point:, the water bottle fell off the car seat opened and then drowned my cell phone which made a sad little beeeep as it died. Then I got the iPhone, courtesy of my employer. At first I was scared to death that I'd kill the $400 phone in a week so I spent a fortune buying a plastic case that had similar characteristics to Fort Knox. That protective case could be thrown (accidentally of course) 10 feet away and while the case might break and scatter, the iPhone inside was always safe. I had a few of those cases. Unfortunately, the case did not survive the nursing assistant topping over an entire 1.5 liter of water directly onto the phone recently. Hence the bubbly sound when I leave you all messages. And, no, the hospital insurance simply does not cover cell phones (but they will kindly replace your bifocals should they break those).
Then what small amount of life the iPhone had left has been nearly extinguished by the thick adobe walls and terrible AT&T service in my new house, where I've been living for a little over two weeks. I must admit, the telephone conversations have been shorter....most people get about 30 seconds of reception before the phone dies out. Sometimes I'm able to call you back on my helper's phone, but I actually have kinda enjoyed the succinctness of my phone conversations. I love to see you all in person so much more.
Then, of course, right before my long hospital stay before the move, the security system on my lemon-of-a-computer started flashing notices that it was time to renew. As some of you were aware, I was not in my finest form during this period and while I managed to purchase the new security, I failed to notice that I didn't install the virus protection. So after I returned from the hospital, my computer decided to join the virus brigade and well, straight up quit. Flat out...f**k you....I'm not even going to turn on, which of course pointed out my error in installation. And so, at this point, I have the bubbly cell and the virused computer. DOWN DOWN DOWN. God telling me to shut up and rest already? Perhaps.
Long story short: a very kind person offered to spot me a new computer. Another very kind person ordered me a MacBook. It arrived and in the meantime we found a better deal and I realized that the first computer did not come with a warranty (which is an impossible place for me to live given my track record). So we returned computer #1, ordered computer #2 with warranty, which of course then took EONS to arrive and well, long story short, I've been online for just a few days.
TODAY was the day I made a decision on best cell phone purchase. A no contract (might as be realistic here) cheap plan with a cheap phone that will hopefully have reception in the house. By tomorrow night, I should be up and running with the same phone number.
First and foremost, apparently my MERCURY is ALWAYS in retrograde. For those of you that have known me for any length of time, you must agree that I periodically have electronic meltdowns usually during a regular ole Mercury retrograde that are darn near unbelievable. I have a new mantra that I get to recite every Tuesday morning to rectify my Mercury. With God's speed, I hope.
Recent history in point:, the water bottle fell off the car seat opened and then drowned my cell phone which made a sad little beeeep as it died. Then I got the iPhone, courtesy of my employer. At first I was scared to death that I'd kill the $400 phone in a week so I spent a fortune buying a plastic case that had similar characteristics to Fort Knox. That protective case could be thrown (accidentally of course) 10 feet away and while the case might break and scatter, the iPhone inside was always safe. I had a few of those cases. Unfortunately, the case did not survive the nursing assistant topping over an entire 1.5 liter of water directly onto the phone recently. Hence the bubbly sound when I leave you all messages. And, no, the hospital insurance simply does not cover cell phones (but they will kindly replace your bifocals should they break those).
Then what small amount of life the iPhone had left has been nearly extinguished by the thick adobe walls and terrible AT&T service in my new house, where I've been living for a little over two weeks. I must admit, the telephone conversations have been shorter....most people get about 30 seconds of reception before the phone dies out. Sometimes I'm able to call you back on my helper's phone, but I actually have kinda enjoyed the succinctness of my phone conversations. I love to see you all in person so much more.
Then, of course, right before my long hospital stay before the move, the security system on my lemon-of-a-computer started flashing notices that it was time to renew. As some of you were aware, I was not in my finest form during this period and while I managed to purchase the new security, I failed to notice that I didn't install the virus protection. So after I returned from the hospital, my computer decided to join the virus brigade and well, straight up quit. Flat out...f**k you....I'm not even going to turn on, which of course pointed out my error in installation. And so, at this point, I have the bubbly cell and the virused computer. DOWN DOWN DOWN. God telling me to shut up and rest already? Perhaps.
Long story short: a very kind person offered to spot me a new computer. Another very kind person ordered me a MacBook. It arrived and in the meantime we found a better deal and I realized that the first computer did not come with a warranty (which is an impossible place for me to live given my track record). So we returned computer #1, ordered computer #2 with warranty, which of course then took EONS to arrive and well, long story short, I've been online for just a few days.
TODAY was the day I made a decision on best cell phone purchase. A no contract (might as be realistic here) cheap plan with a cheap phone that will hopefully have reception in the house. By tomorrow night, I should be up and running with the same phone number.
Saturday, August 21, 2010
Dr Appointment #1056
Ok well maybe I have quite reached the 1000 mark, but it sure feels like I've had a fair few trips to my doctor's office as well as the hospital.
I limped my way today to the car without tears....a notable improvement in my overall existence. My sores have notably improved since Monday when I took the two week Neutrapren shot which meant to my mind that, my God, maybe their medication actually worked! However, today's blood count indicates a very different story: Neutrophils 0.0. The Neturapren was supposed to boost the Neutrophils (cute alliteration, eh?). Neutrophils are the WBC that help you fight infection. So when I mentioned that the sores seemed to be getting better after the shot in spite of the counts, my doctor suggested "well maybe all the firemen are at the fire." Seems like a cute colloquialism, but seems to me the satellite (ie the blood count) outta be able to see how many "firemen" (ie the neutrophils) there are.
This afternoon it dawned on me: since about Monday I've been dedicated to taking at least 10,000mg of Vitamin C per day. I read somewhere that there was this study long, long ago where they administered 10,000 mg Vit C per day to the platelet-deprived and their counts went up until they stopped taking it, then when they resumed their counts went up again. Vit C seems alot less harmless than my other options.
As an exercise in meditation (please join me here), I found my 2008 blood counts (when I was a healthy young thing) and made Crayola reminders to paste up on my wall. So, if you all don't mind, write these numbers on a card, put them on your mantle, memorize them, or simply read them now until you forget them in about .12 nanoseconds (might as well be realistic). Here's what we are looking for:
Platelets: 250,000
White Blood Cells (WBC) 8,500
Red Blood Cells (RBC) 5 million
Neutrophils 73%
Don't drop your hat when you see today's numbers:
Platelets 2,000
WBC 800
RBC 3.18 million
Neutrophils 2.6%
SO yes, I had a platelet transfusion today and my doc wants to add YET ANOTHER drug to my regimen. A drug, whose name is written on a piece of paper across the room which seems really too far away for me to do anything about it right now, that is supposed to stop the bleeding of my mucous membranes on any of the numerous orifices on my body. If we can STOP the bleeding when platelets get low, then I can have more time between transfusions, which effectively could extend my life. It is a race--body must cure itself before body reacts to all blood products leading to death. So says the cheery medical establishment.
I'm gonna look up the drug, the side effects, and talk to dear Marla--a former AA survivor with numbers that looked like mine on this path to see what she thinks--before I agree.
I limped my way today to the car without tears....a notable improvement in my overall existence. My sores have notably improved since Monday when I took the two week Neutrapren shot which meant to my mind that, my God, maybe their medication actually worked! However, today's blood count indicates a very different story: Neutrophils 0.0. The Neturapren was supposed to boost the Neutrophils (cute alliteration, eh?). Neutrophils are the WBC that help you fight infection. So when I mentioned that the sores seemed to be getting better after the shot in spite of the counts, my doctor suggested "well maybe all the firemen are at the fire." Seems like a cute colloquialism, but seems to me the satellite (ie the blood count) outta be able to see how many "firemen" (ie the neutrophils) there are.
This afternoon it dawned on me: since about Monday I've been dedicated to taking at least 10,000mg of Vitamin C per day. I read somewhere that there was this study long, long ago where they administered 10,000 mg Vit C per day to the platelet-deprived and their counts went up until they stopped taking it, then when they resumed their counts went up again. Vit C seems alot less harmless than my other options.
As an exercise in meditation (please join me here), I found my 2008 blood counts (when I was a healthy young thing) and made Crayola reminders to paste up on my wall. So, if you all don't mind, write these numbers on a card, put them on your mantle, memorize them, or simply read them now until you forget them in about .12 nanoseconds (might as well be realistic). Here's what we are looking for:
Platelets: 250,000
White Blood Cells (WBC) 8,500
Red Blood Cells (RBC) 5 million
Neutrophils 73%
Don't drop your hat when you see today's numbers:
Platelets 2,000
WBC 800
RBC 3.18 million
Neutrophils 2.6%
SO yes, I had a platelet transfusion today and my doc wants to add YET ANOTHER drug to my regimen. A drug, whose name is written on a piece of paper across the room which seems really too far away for me to do anything about it right now, that is supposed to stop the bleeding of my mucous membranes on any of the numerous orifices on my body. If we can STOP the bleeding when platelets get low, then I can have more time between transfusions, which effectively could extend my life. It is a race--body must cure itself before body reacts to all blood products leading to death. So says the cheery medical establishment.
I'm gonna look up the drug, the side effects, and talk to dear Marla--a former AA survivor with numbers that looked like mine on this path to see what she thinks--before I agree.
Friday, August 20, 2010
back online
Every now and again, usually during a Mercury retrograde, I have a complete electronic meltdown. This clearly describes my last few weeks....from the moment that the nursing assistant at the hospital spilled water directly on my iPhone (and no, sorry, the hospital will not cover this) to the moment that my limping computer came to a complete stop due to virus infection. Infections, infections everywhere I look: my phone (ok well maybe just a good old fashioned drowning), my computer, my leg, my armpit, my buttocks in a multiple places in a major way.
My doctor showed up again after what seemed like a two week hiatus where he was "unreachable". To me, this revolving doctor thing is not only unpleasant but potentially life-threatening. After all, you can't just swap out your wife for wife 1,2,3,4,5 or 6. I mean, you might like wife 3 or 4, but there could just as easily be the murder of wife 1. We all have our preferences. So why is it different with doctors?
Long story short: according to Dr. Synder, the three shots of Neutrapren which yielded no results, was not a long enough trial period. According to Doctor 3, who was on call at the hospital when I was there and Dr. Synder was probably laying around on some beach with his cell phone locked away in his hotel safe, three shots was enough.
And so, this past Monday, Dr. Synder and I agreed that I'd try the two week version of the same drug. A timed-release drug. Now I am absolutely no fan of allopathic medicine (unless it would work already, darn it) but you gotta admit that this is pretty impressive. Somehow or another, a little bit of the drug is released into my system every day for two weeks? I mean I should probably stop writing and visit Wikipedia and tell you how it really works, but quite frankly, I'm not sure I really care for the details (after all, I could have just injected myself with some kind of plastic that slowly lets out the drug, or, well GOD knows really and those of us with overactive imaginations might as well simply NOT THINK ABOUT THESE THINGS BECAUSE IM SUPPOSED TO BE FOCUSED ON HEALING.
I took the shot. It would appear that some of these sores all over my body got a bit better after the shot. Tomorrow I will have a complete blood count (CBC) and we'll find out if the numbers reflect improvement. In the meantime, let me just correct the record by saying that my fantasy stationary bicycle idea was more of a whimsical pondering induced by hope, boredom and most likely the stuffiness of my afternoon bedroom. I can't sit down AT ALL or IN ANY WAY due the buttock issues and as one friend kindly pointed out I was perhaps not quite ready for a bicycle seat. Oh yeah. I guess there's a point worth noting.
Tuesday, August 10, 2010
New news and a request
New address: 151.5 Duran St santa fe
Mailing address: po box 32584 santa fe nm 87594
I moved into my new place a few days ago. Thanks so much to everyone who helped move me. It was a long day.
The new place is ok, though my cell phone gets shoddy reception so if you ring and you don't get me, please leave a message.
I'm feeling a bit better overall. Three more days of iv antibiotics and a doctor's appointment on Thursday. Haven't seen the fellow in over two weeks so we'll see what he has to say.
Marla also tried Neutrapren with no results.
The good news: Friday platelets 7. Sunday platelets 3. (wanted platelets 150) that said it would seem that they didn't drop their usual 10 per day...maybe just maybe my body is producing a few on it's own.
REQUEST:
Anyone got a stationary bicycle they're not using? I can't walk well yet (cellulitis in the leg), but I think I could bicycle.....
Mailing address: po box 32584 santa fe nm 87594
I moved into my new place a few days ago. Thanks so much to everyone who helped move me. It was a long day.
The new place is ok, though my cell phone gets shoddy reception so if you ring and you don't get me, please leave a message.
I'm feeling a bit better overall. Three more days of iv antibiotics and a doctor's appointment on Thursday. Haven't seen the fellow in over two weeks so we'll see what he has to say.
Marla also tried Neutrapren with no results.
The good news: Friday platelets 7. Sunday platelets 3. (wanted platelets 150) that said it would seem that they didn't drop their usual 10 per day...maybe just maybe my body is producing a few on it's own.
REQUEST:
Anyone got a stationary bicycle they're not using? I can't walk well yet (cellulitis in the leg), but I think I could bicycle.....
Friday, July 30, 2010
Apples pls
In hospital again. Fevers. Won't seem to stop. Iv antibiotics. Dr wants me to do treatment to c if we can. Boost neutraphils. I'm thinking on it.
Green apples and raw almond butter please. 2203
if I do treatment I b here few days at least. They say flu symphtomsbut I have anyway
ok cell. Broken.I'll do the besti can to answer. Need food while here
thx & love
k
Green apples and raw almond butter please. 2203
if I do treatment I b here few days at least. They say flu symphtomsbut I have anyway
ok cell. Broken.I'll do the besti can to answer. Need food while here
thx & love
k
Sunday, July 25, 2010
Thank you for organizing
The 24/7 care at home is now key for my continued survival. These people are angels. That's really all there is to be said.
I spent the night in hospital getting platelets and blood. I need extra blood this time because I'm bleeding vaginally.....something that must stop in the near future.
It's the 25th and in spite of my best efforts I am getting a little nervous about my upcoming move out date of august 10. If you know of a great rental please let us know.
Thanks for your continued support. I am determined to fullr recover. Love and light.
I spent the night in hospital getting platelets and blood. I need extra blood this time because I'm bleeding vaginally.....something that must stop in the near future.
It's the 25th and in spite of my best efforts I am getting a little nervous about my upcoming move out date of august 10. If you know of a great rental please let us know.
Thanks for your continued support. I am determined to fullr recover. Love and light.
Wednesday, July 21, 2010
Home & new food list
I'm soooo much happier home. I have 24/7 help, at least for the week....which I could not do without. My leg still hurts but with honey and cilantro treatments the redness is mostly gone. It is still swollen and unable to bear weight. Thank god for my grandmas little scooter walker so I can at least get to the bathroom.
There's a hole in my buttock. This I could do without.
Food update: I'm onto solids again. Think whole grains, whole beans, salads cut small as chewing still an issue, protein ie small chicken or fish . I should just drink the bone marrow soup so if u made me some drop it by. I'm gonna hit it like medicine instead of asking u try to mask it for me. I'll try to drink 1/2 cup per day
There's a hole in my buttock. This I could do without.
Food update: I'm onto solids again. Think whole grains, whole beans, salads cut small as chewing still an issue, protein ie small chicken or fish . I should just drink the bone marrow soup so if u made me some drop it by. I'm gonna hit it like medicine instead of asking u try to mask it for me. I'll try to drink 1/2 cup per day
Tuesday, July 20, 2010
Going Home today
I've been in the hospital for 8 days and home seems like a distant, albeit almost over, heaven. Thanks to friends and family I will have 24/7 care, at least for a little while. I will continue my iv antibiotics and my constant tending of cellitus leg, and very sores in and around my anus. These are the worst because I can't lie flat on my back or sit very well and well standing is difficult because the blood pressure in the cellitus leg is hugely painful. Ug.
That said, I have my deceased grandmothers fancy red roller walker to help me get around. The constant cilantro poultices are, I'm absolutely certain, what's making the cellitus better. I will happily!!! pay for the organic cilantro if you will make it and drop it off at the place.
How to make: 6-8 heads washed organic cilantro, blend or food process to as close to baby food consistancy as possible, use as little water as possible. Deliver. 33 cloudstone drive
platlets 26. WBC .8 netraphils 1%
not tooo bad
oh and I'm eating solid foods now! I'm hungry! Please continue to help feed me! Veggies, grains, cooked beans, chicken, fish, etc. Still can't have spicy or hard to chew foods. Love you all!!!
love you all
That said, I have my deceased grandmothers fancy red roller walker to help me get around. The constant cilantro poultices are, I'm absolutely certain, what's making the cellitus better. I will happily!!! pay for the organic cilantro if you will make it and drop it off at the place.
How to make: 6-8 heads washed organic cilantro, blend or food process to as close to baby food consistancy as possible, use as little water as possible. Deliver. 33 cloudstone drive
platlets 26. WBC .8 netraphils 1%
not tooo bad
oh and I'm eating solid foods now! I'm hungry! Please continue to help feed me! Veggies, grains, cooked beans, chicken, fish, etc. Still can't have spicy or hard to chew foods. Love you all!!!
love you all
Cilantro plea & meditative thoughts
I don't seem to really sleep anymore...certainly not at night. It seems to be when I'm trying to manage whatever current symphtom is the most overwhelming.
Right now without a doubt that would be my 3xs swollen red hot right leg. It's called cellitus and cilantro poultices. Do seem to be working. This is a call for cilantro paste. U need 6-8 heads organic cilantro, put in your blender, think baby food, deliver. I really can't have enough of this so please if u have the time! Rm 2203
while I don't sleep, I do focus on breathe and spreading healing light throughout my body and last night it came to me that the total transformation of every aspect of my being simply means letting go and being totally immersed in the present. It wasn't a thought but rather a feeling of absorbsion. Breathe. Focus on the heart light spreading within. Breathe. It's not so complicated and intellectual as my monkeymind likes to make of it.
On that note, I'm beginning to crave very soft but solid foods. Call befoe cooking? Congees ESP teff for breakfast very good. Thank you.
Right now without a doubt that would be my 3xs swollen red hot right leg. It's called cellitus and cilantro poultices. Do seem to be working. This is a call for cilantro paste. U need 6-8 heads organic cilantro, put in your blender, think baby food, deliver. I really can't have enough of this so please if u have the time! Rm 2203
while I don't sleep, I do focus on breathe and spreading healing light throughout my body and last night it came to me that the total transformation of every aspect of my being simply means letting go and being totally immersed in the present. It wasn't a thought but rather a feeling of absorbsion. Breathe. Focus on the heart light spreading within. Breathe. It's not so complicated and intellectual as my monkeymind likes to make of it.
On that note, I'm beginning to crave very soft but solid foods. Call befoe cooking? Congees ESP teff for breakfast very good. Thank you.
Sunday, July 18, 2010
EGO? Confirmed..
WBC 0.7 ANC 0.0 hgb 9.3 plts 6
So as many of you know, my decision to forego Western medicine treatments has not been an easy one for me to make. I know many of you disagree with the natural path I've chosen--even though I'm currently still in the middle of hospitalized antibiotic treatment. A necessary (if only for the painkillers the first few days) delay in my wholistic treatment.
For the first time ever, i was happy that the doctors routated.
Meet dr schburt, a vetern oncologist who has clearly been around the block a few times.
His transfusion strategy: unless your bleeding, let your platelet level hang out at 1. Let your hemoglobin get to 6 before transfusing. Stretch out this transfusions to the max.
I like it.
I have been lucky enough to truly befriend one of my nurses here who agrees with my chosen strategy. She has 25 years experience watching both successful and not successful bone marrow transplants and agrees with that NIH study that concludes only 50% make it five years later.
Here's my ego confirmation kicker: In private conversation with dr. Schburt...let's just say dr schburt doesn't think I'd make it through a transplant either.
I feel confirmed, releived that in spite of all my second guessing and internal debating, the truth is clear. There is only one way out of this and it's going to require complete transformation on all levels of my being.
It is both a terrifying and liberating realization.
There are not words enough to express my gratitude to all of you out there contributing in whatever ways you can. I love you all.
So as many of you know, my decision to forego Western medicine treatments has not been an easy one for me to make. I know many of you disagree with the natural path I've chosen--even though I'm currently still in the middle of hospitalized antibiotic treatment. A necessary (if only for the painkillers the first few days) delay in my wholistic treatment.
For the first time ever, i was happy that the doctors routated.
Meet dr schburt, a vetern oncologist who has clearly been around the block a few times.
His transfusion strategy: unless your bleeding, let your platelet level hang out at 1. Let your hemoglobin get to 6 before transfusing. Stretch out this transfusions to the max.
I like it.
I have been lucky enough to truly befriend one of my nurses here who agrees with my chosen strategy. She has 25 years experience watching both successful and not successful bone marrow transplants and agrees with that NIH study that concludes only 50% make it five years later.
Here's my ego confirmation kicker: In private conversation with dr. Schburt...let's just say dr schburt doesn't think I'd make it through a transplant either.
I feel confirmed, releived that in spite of all my second guessing and internal debating, the truth is clear. There is only one way out of this and it's going to require complete transformation on all levels of my being.
It is both a terrifying and liberating realization.
There are not words enough to express my gratitude to all of you out there contributing in whatever ways you can. I love you all.
Friday, July 16, 2010
Systemic blood infection
I don't know what that means except for alot of antiobiotics. And cellulitis on thr right low leg---now here were talking serious pain. I was on a narcotics spree for my first few days here--but have now come to my senses and and whimpering sometimes loudly in self pity instead. I'm using the tv for drug so u have dvd please bring.
Diet clarification for now NO MISO
veggie broths light and small quantities (but frequent) help me alot
the congees
1/4 cup nongluten organic grain
4-5 cup good water
cook 1 hour
let sit overnight
cook 2 hours in am
u can add veggies at end or cook those separately and bring as a side. This mAkes alot. I eat alittle so pls keep the bulk & add to soups.
How am I? Tired. Uncomfortable. Determined throughthe grace of god to get through this.
Thx for ur help
I'll b very happy.
Diet clarification for now NO MISO
veggie broths light and small quantities (but frequent) help me alot
the congees
1/4 cup nongluten organic grain
4-5 cup good water
cook 1 hour
let sit overnight
cook 2 hours in am
u can add veggies at end or cook those separately and bring as a side. This mAkes alot. I eat alittle so pls keep the bulk & add to soups.
How am I? Tired. Uncomfortable. Determined throughthe grace of god to get through this.
Thx for ur help
I'll b very happy.
Monday, July 12, 2010
Against Medical Advice AMA
I left the hospital after my platelet transfusion and before they Iv d me with antibiotics. They dismissed me ama which means insurance won't cover the visit.
I have chosen to believe the following: if I am going to really heal, the body must learn to heal itself. Fevers are a good thing because it is the bodys way of fighting. I am taking natural antibiotics at home and while I am pretty weak, this is a much better environment for me than the noisy dirty and uncomfortable hospital.
None of these choices are easy. Marla has been a great support. I spoke with her last night. She too fought the fevers at home.
Barley miso is out! Pick any South River kind that is gluten free please. Barley has gluten and it has been well documented that gluten and dairy are no-nos for autoimmune diseases. Which means sadly that ghee is also out.
I have chosen to believe the following: if I am going to really heal, the body must learn to heal itself. Fevers are a good thing because it is the bodys way of fighting. I am taking natural antibiotics at home and while I am pretty weak, this is a much better environment for me than the noisy dirty and uncomfortable hospital.
None of these choices are easy. Marla has been a great support. I spoke with her last night. She too fought the fevers at home.
Barley miso is out! Pick any South River kind that is gluten free please. Barley has gluten and it has been well documented that gluten and dairy are no-nos for autoimmune diseases. Which means sadly that ghee is also out.
Friday, July 9, 2010
The Whirlwind of Dietary Shifts
Ok. I know it's like trying to nail down a whirlwind...my current diet of the week.
Thank you all who spent time feeding and/or cleaning the juicer. The juicer is going to take a rest for now. Apparently juicing and fruit of all kinds can thin the blood. A situation that I don't need at this precise moment....I am currently trying to control the bleeding I have going on.
So here's the current plan for this week, from the recommendations of a Nutritionist of 30 years with whom I am consulting:
LUNCH & DINNER: Have ORGANIC 2 year (at least) Barley or Sweet Brown miso soup for lunch and dinner every day (miso is a fermented food that is a natural antibiotic and also removes radiation and virus from the blood – use only 2 year old or older miso)
Get a good macrobiotic cookbook and use the recipes for a simple miso soup. I prefer the brand "South River" Miso (found at Coop & Whole Foods) for the following reason:
"Miso has the aility to absorb toxins from plastic containers and should e transferred into glass, wood or enamel for prolonged storage. The same holds true for other fermented foods and all oils. Discard the miso that is stuck to the plastic"
Healing with Natural Foods by Paul Pitchford
BREAKFAST Have whole grain porridges daily
a) Put 1/4 cup of whole grain e.g. millet, brown rice, whole barley into a pot (a double boiler works great).
b) Add 4-5 cups of filtered water or twig tea, 1/4 tsp of sea salt per cup.
c) Cook for 1 hour before bedtime. Turn off and let sit overnight
d) In the AM cook another 2 hours, adding water/twig tea if necessary
e) Serve topped as you wish with cooked vegetables e.g. carrots, corn, peas, lentils, butter, etc)
f) Garnish with the sea vegetable, Nori. Produces 3-4 servings
So if you wanted to help me with getting the congee started (ie the pm part) here at my place or if you wanted to bring it over with you, that'd be spendid. This process is alot for me on my own. Stovetop cooking is preferable.
PS. Everyone that I speak with--doctors, healers, AA survivors--insist that ALL FOODS must be 100%ORGANIC. I hate to say it but I do not believe that Trader Joe's offers true organic food so if possible please chose foods from our other wonderful venues: Natural Grocers, Wild Oats or Whole Foods.
Thank you for your continued help.
Thank you all who spent time feeding and/or cleaning the juicer. The juicer is going to take a rest for now. Apparently juicing and fruit of all kinds can thin the blood. A situation that I don't need at this precise moment....I am currently trying to control the bleeding I have going on.
So here's the current plan for this week, from the recommendations of a Nutritionist of 30 years with whom I am consulting:
LUNCH & DINNER: Have ORGANIC 2 year (at least) Barley or Sweet Brown miso soup for lunch and dinner every day (miso is a fermented food that is a natural antibiotic and also removes radiation and virus from the blood – use only 2 year old or older miso)
Get a good macrobiotic cookbook and use the recipes for a simple miso soup. I prefer the brand "South River" Miso (found at Coop & Whole Foods) for the following reason:
"Miso has the aility to absorb toxins from plastic containers and should e transferred into glass, wood or enamel for prolonged storage. The same holds true for other fermented foods and all oils. Discard the miso that is stuck to the plastic"
Healing with Natural Foods by Paul Pitchford
BREAKFAST Have whole grain porridges daily
a) Put 1/4 cup of whole grain e.g. millet, brown rice, whole barley into a pot (a double boiler works great).
b) Add 4-5 cups of filtered water or twig tea, 1/4 tsp of sea salt per cup.
c) Cook for 1 hour before bedtime. Turn off and let sit overnight
d) In the AM cook another 2 hours, adding water/twig tea if necessary
e) Serve topped as you wish with cooked vegetables e.g. carrots, corn, peas, lentils, butter, etc)
f) Garnish with the sea vegetable, Nori. Produces 3-4 servings
So if you wanted to help me with getting the congee started (ie the pm part) here at my place or if you wanted to bring it over with you, that'd be spendid. This process is alot for me on my own. Stovetop cooking is preferable.
PS. Everyone that I speak with--doctors, healers, AA survivors--insist that ALL FOODS must be 100%ORGANIC. I hate to say it but I do not believe that Trader Joe's offers true organic food so if possible please chose foods from our other wonderful venues: Natural Grocers, Wild Oats or Whole Foods.
Thank you for your continued help.
Wednesday, July 7, 2010
Emails from AA Survivors
As promised, here is John Hopkin's response to the information circulating (guilty as charged):
http://www.hopkinskimmelcancercenter.org/index.cfm/cID/1684/mpage/item.cfm/itemID/1016
On a brighter note, here are some questions I asked and answers I received from AA survivors who did it naturally, based more or less on the Gerson Therapy (http://www.gerson.org/):
1. If you were to be diagnosed TODAY with AA, knowing what you know....what would your diet look like TODAY? what foods, herbs and/or vitamins would you do? which ones would you avoid? I know we're all different, I just wonder what you would do...having already tried many things.
BRUCE: Grains, greens, beans, roots and fruit - Dr. Sherry Rogers, MD and Environmental Sensitivities expert, suggested 50% grains, 25% greens and 25% beans. Then compliment that with carrots and fresh fruit. I juiced organic carrots for about 6 months and was on the grains, greens and beans diets for about the same amount of time. Bruce also highly recommends seeing an allergist and specialist in Environmental Sensitivities to find out any allegies I might have.
MARLA: If I were to get diagnosed today what would my diet look like? Hmmm. That might take some time to document, but at first blush, I would not go completely vegan like I did in the beginning. I notice personally my body works better when I have some animal products. Doesn't mean you need a ton, just some every so often, like in one meal a day. I would probably go back to juicing about 4 to 8 cups a day, and do mostly greens than carrots. I think I over did the carrots and go a bit orange in color skin-wise. I would probably do daily potassium broths. Have you heard of Bieler's broth? I would go along those lines and may also combine that with a bone broth. I would not go completely raw like I did at one point, but do some raw and some cooked. I think there is benefit to both cooked and raw foods regarding live enzymes and also depending upon how well your digestive system works. I would go easy on anything sweet, but make sure to include salt when necessary since that is important for the adrenal glands. I would make sure to get seaweeds in each day for microminerals. And of course as much of my foods and juices would be organic or biodynamic. Avoid chemicals as much as possible. Get some sunshine and fresh air each day. Walk each day if you can, and balance up time to down time. That is, make sure to get enough rest to make up for the time you are up and around. The body needs some down time to regenerate and heal.
So those are my thoughts at first blush. Oh, if you find that you react negatively to anything, avoid them instead of trying to get yourself to acclimate to them. Find things that make you laugh since happiness boosts the immune system. If you're inclined, I would also recommend rebounding. I think that helps to get the cells flowing in areas that don't normally get movement. The herbs I would take would depend upon my current symptoms like if I feel tense or restless or sleepless, etc. I would avoid taking too many foods that might thin my blood too much like too much garlic and onions. It's okay to have some, but I tend to use a lot, so if my plts were to get low, I would cut back on them just to make sure I didn't cause easy bleeding. I would also be moderate with spices. Some spices help to stimulate the function of the liver, but too much makes it sluggish. So moderation with spicy stuffs.
2. Did you follow all the Gerson vitamin protocal? Potassium, Niacin, etc. etc.
BRUCE: I do an infrared sauna at least every other day and take the following vitamins
Before a 45-50 minute sauna: Recancostat, Niacin, Alpha Lipoic Acid, first Tyler Multiplex -1 Without Iron, , first 1000 Mg C, Glycine
After: copper, folic acid, B-Complex, Liquid Magnesium, Cal-Mag Citrate, E-Gems, Second Tyler Multiplex -1 Without Iron, Second 1000 Mg
MARLA: No, I did not follow the Gerson vitamin protocol. Being that I didn't follow their protocol, I don't feel qualified to judge how good it might be.
3. This is perhaps the most important question. You said that your platelets began to hold. How did you know they held? If you got a reading of say 4, would you just put the transfusion off a day and see if the next day read at 4?
BRUCE: By holding, I guess it was that they stopped going down at every visit. It was a long time ago, but I seem to remember that they finally stabilized at about 8 and have not been below 10-15 in a really long time. For most people that is unacceptable but for me I seem to be able to deal with it. I do try to get the fresh air and exercise as I mentioned, I try to avoid stress and I do not exert.
MARLA: My hemo and I had an arrangement wherein she provided me and my procedure center with standing orders. What that consisted of was a form letter/order sheet that gave the procedure center permission to transfuse me whenever my CBC showed my hgb below 8 and plts below 10K. I would go into her office 2x a week for a CBC at first to see my counts, then I would make my own transfusion appt with the procedure center. As I got a better feel for my hgb transfusion needs, I started to get CBCs weekly. So when I started to feel that my counts were holding in the 4K-8K range, I would hold off of transfusion as long as I could before the next CBC. For instance, if I went in and my hbg was 7.5, but I felt that I could manage, I would not schedule a transfusion and gauge day by day. If the next day I felt I needed the blood, I would make an appt for the next day. Being that I had my CBC in hand, I didn't need to see my doc to decide this.
4. Which blood counts recovered first for you?
BRUCE: Red Blood Cells first, then White Blood Cells and Platelets are still only at about 15-20 but it works for me. Bruce has been transfusion free for 8 years.
MARLA: WBC, RBC then Platelets
So I know my dietary needs seem to change daily. I just spent most of the last week as nearly vegetarian (I know my acupuncturists are rolling their eyes at me right now)....and well, I think that perhaps a little animal protein is in order. The issue is this: my liver is struggling to detoxify the body from whatever it was that I was exposed to. Animal proteins tax the liver to digest. Yet while I was drinking more bone broth two weeks ago, my red blood cells lasted 17 days. As a more (not totally) vegetarian, they lasted 13 days. So the experiment continues. Please stand by.....
In the meantime I am consulting with a Nutritionist of thirty years who has training in both Eastern and Western methodologies. If I could only open the files she sent me.....I've totally destroyed my Microsoft situation. Ug.
Though I trust the Universe to provide the most ideal situation, I must admit I am a little concerned about the end of my great living situation on August 10. Please let me know if you have any ideas, locations, or situations that you might think appropriate. Blessings and hope.
http://www.hopkinskimmelcancercenter.org/index.cfm/cID/1684/mpage/item.cfm/itemID/1016
On a brighter note, here are some questions I asked and answers I received from AA survivors who did it naturally, based more or less on the Gerson Therapy (http://www.gerson.org/):
1. If you were to be diagnosed TODAY with AA, knowing what you know....what would your diet look like TODAY? what foods, herbs and/or vitamins would you do? which ones would you avoid? I know we're all different, I just wonder what you would do...having already tried many things.
BRUCE: Grains, greens, beans, roots and fruit - Dr. Sherry Rogers, MD and Environmental Sensitivities expert, suggested 50% grains, 25% greens and 25% beans. Then compliment that with carrots and fresh fruit. I juiced organic carrots for about 6 months and was on the grains, greens and beans diets for about the same amount of time. Bruce also highly recommends seeing an allergist and specialist in Environmental Sensitivities to find out any allegies I might have.
MARLA: If I were to get diagnosed today what would my diet look like? Hmmm. That might take some time to document, but at first blush, I would not go completely vegan like I did in the beginning. I notice personally my body works better when I have some animal products. Doesn't mean you need a ton, just some every so often, like in one meal a day. I would probably go back to juicing about 4 to 8 cups a day, and do mostly greens than carrots. I think I over did the carrots and go a bit orange in color skin-wise. I would probably do daily potassium broths. Have you heard of Bieler's broth? I would go along those lines and may also combine that with a bone broth. I would not go completely raw like I did at one point, but do some raw and some cooked. I think there is benefit to both cooked and raw foods regarding live enzymes and also depending upon how well your digestive system works. I would go easy on anything sweet, but make sure to include salt when necessary since that is important for the adrenal glands. I would make sure to get seaweeds in each day for microminerals. And of course as much of my foods and juices would be organic or biodynamic. Avoid chemicals as much as possible. Get some sunshine and fresh air each day. Walk each day if you can, and balance up time to down time. That is, make sure to get enough rest to make up for the time you are up and around. The body needs some down time to regenerate and heal.
So those are my thoughts at first blush. Oh, if you find that you react negatively to anything, avoid them instead of trying to get yourself to acclimate to them. Find things that make you laugh since happiness boosts the immune system. If you're inclined, I would also recommend rebounding. I think that helps to get the cells flowing in areas that don't normally get movement. The herbs I would take would depend upon my current symptoms like if I feel tense or restless or sleepless, etc. I would avoid taking too many foods that might thin my blood too much like too much garlic and onions. It's okay to have some, but I tend to use a lot, so if my plts were to get low, I would cut back on them just to make sure I didn't cause easy bleeding. I would also be moderate with spices. Some spices help to stimulate the function of the liver, but too much makes it sluggish. So moderation with spicy stuffs.
2. Did you follow all the Gerson vitamin protocal? Potassium, Niacin, etc. etc.
BRUCE: I do an infrared sauna at least every other day and take the following vitamins
Before a 45-50 minute sauna: Recancostat, Niacin, Alpha Lipoic Acid, first Tyler Multiplex -1 Without Iron, , first 1000 Mg C, Glycine
After: copper, folic acid, B-Complex, Liquid Magnesium, Cal-Mag Citrate, E-Gems, Second Tyler Multiplex -1 Without Iron, Second 1000 Mg
MARLA: No, I did not follow the Gerson vitamin protocol. Being that I didn't follow their protocol, I don't feel qualified to judge how good it might be.
3. This is perhaps the most important question. You said that your platelets began to hold. How did you know they held? If you got a reading of say 4, would you just put the transfusion off a day and see if the next day read at 4?
BRUCE: By holding, I guess it was that they stopped going down at every visit. It was a long time ago, but I seem to remember that they finally stabilized at about 8 and have not been below 10-15 in a really long time. For most people that is unacceptable but for me I seem to be able to deal with it. I do try to get the fresh air and exercise as I mentioned, I try to avoid stress and I do not exert.
MARLA: My hemo and I had an arrangement wherein she provided me and my procedure center with standing orders. What that consisted of was a form letter/order sheet that gave the procedure center permission to transfuse me whenever my CBC showed my hgb below 8 and plts below 10K. I would go into her office 2x a week for a CBC at first to see my counts, then I would make my own transfusion appt with the procedure center. As I got a better feel for my hgb transfusion needs, I started to get CBCs weekly. So when I started to feel that my counts were holding in the 4K-8K range, I would hold off of transfusion as long as I could before the next CBC. For instance, if I went in and my hbg was 7.5, but I felt that I could manage, I would not schedule a transfusion and gauge day by day. If the next day I felt I needed the blood, I would make an appt for the next day. Being that I had my CBC in hand, I didn't need to see my doc to decide this.
4. Which blood counts recovered first for you?
BRUCE: Red Blood Cells first, then White Blood Cells and Platelets are still only at about 15-20 but it works for me. Bruce has been transfusion free for 8 years.
MARLA: WBC, RBC then Platelets
So I know my dietary needs seem to change daily. I just spent most of the last week as nearly vegetarian (I know my acupuncturists are rolling their eyes at me right now)....and well, I think that perhaps a little animal protein is in order. The issue is this: my liver is struggling to detoxify the body from whatever it was that I was exposed to. Animal proteins tax the liver to digest. Yet while I was drinking more bone broth two weeks ago, my red blood cells lasted 17 days. As a more (not totally) vegetarian, they lasted 13 days. So the experiment continues. Please stand by.....
In the meantime I am consulting with a Nutritionist of thirty years who has training in both Eastern and Western methodologies. If I could only open the files she sent me.....I've totally destroyed my Microsoft situation. Ug.
Though I trust the Universe to provide the most ideal situation, I must admit I am a little concerned about the end of my great living situation on August 10. Please let me know if you have any ideas, locations, or situations that you might think appropriate. Blessings and hope.
Tuesday, July 6, 2010
Not yet
Platelets today 1
someone sent me a link saying the John Hopkins news I posted last week was not true. I'll post the link later when I'm not in hospital getting transfusion.
the good news is that for such low platelets I didn't feel so terrible. No spontaneous bruising. It's important to remember that it took the other survivors about a year to stabilize. I've only been on my program for about a month.
It's also good to know Marla stopped transfusions when she was at 8 plts and Bruce is still alive transfusion free 8 years later w plts between 10-15. I have inspiring emails from both that I will post soon.
In the end it is only numbers.
Don't get me wrong...I'm a little sad also. I had hoped that they might bottom out at 3 or 4. The challenge is to see reality and to stay positive. In the meantime the tv tempts me with fried foods on the cooking channel, cakes, even a wendys frosty is looking kinda delicious.
Please sign up for shifts. I am not afraid to admit that I need your help right now. Let's pray a perfect place to live will emerge before august 10
someone sent me a link saying the John Hopkins news I posted last week was not true. I'll post the link later when I'm not in hospital getting transfusion.
the good news is that for such low platelets I didn't feel so terrible. No spontaneous bruising. It's important to remember that it took the other survivors about a year to stabilize. I've only been on my program for about a month.
It's also good to know Marla stopped transfusions when she was at 8 plts and Bruce is still alive transfusion free 8 years later w plts between 10-15. I have inspiring emails from both that I will post soon.
In the end it is only numbers.
Don't get me wrong...I'm a little sad also. I had hoped that they might bottom out at 3 or 4. The challenge is to see reality and to stay positive. In the meantime the tv tempts me with fried foods on the cooking channel, cakes, even a wendys frosty is looking kinda delicious.
Please sign up for shifts. I am not afraid to admit that I need your help right now. Let's pray a perfect place to live will emerge before august 10
Sunday, July 4, 2010
Anyone?
Anyone got the PC Microsoft Professional Office 2003 edition? Someone accidentally wiped mine out and now I need the disks to reinstall so that I can get to my 2009 tax info, etc, etc.
Also, I have now developed what is called a Fissure Hemmoroid (think Grand Canyon taking a right out of your butthole--sorry it's definitely not charming anyway you put it). I've done internet research, ordered product at 3am in the morning (perhaps not the best decision in retrospect) and am now asking the general public for suggestions of things that worked for you, your family, your dog, your best friend, whomever. I promise I won't tell anyone of your situation. I need answers because so far this pain beats all. If you haven't read what I've already tried, I refer you to my earlier post:
http://yogadifferent.blogspot.com/2010/05/important-lessons-learned-over-past.html
Please let me know: fieldofcosmos@gmail.com
Also, I have now developed what is called a Fissure Hemmoroid (think Grand Canyon taking a right out of your butthole--sorry it's definitely not charming anyway you put it). I've done internet research, ordered product at 3am in the morning (perhaps not the best decision in retrospect) and am now asking the general public for suggestions of things that worked for you, your family, your dog, your best friend, whomever. I promise I won't tell anyone of your situation. I need answers because so far this pain beats all. If you haven't read what I've already tried, I refer you to my earlier post:
http://yogadifferent.blogspot.com/2010/05/important-lessons-learned-over-past.html
Please let me know: fieldofcosmos@gmail.com
Friday, July 2, 2010
Waking up Determined
With each new outcropping of weird bodily pain, I am all the more determined to overcome these challenges. It seems like one strange infection disappears only to be replaced by another and I end up spending my days managing the new and the old symptoms. My butt situation has become excruiticating. One big pain in the butt! (The irony that I too can be one big pain in the butt for those of you kind enough to come help me is not at all overlooked!). Thank you for your patience.
Yet as I wake up and look out my window (until August 10th that is) at the pinon forest--which is absolutely delighted this morning with the rain---and I hear the birds singing their hearts out, I am so thankful for still being here. I find myself thinking only one thing: I want to live. Then I take a grateful deep breathe and realize: I am living right now. And it's good in spite of my body issues and complaints.
My doctor appointment is next week and through prayer and determination, I hope to have these symptoms under control and me looking good. After all, I have a new hairdo.
Yet as I wake up and look out my window (until August 10th that is) at the pinon forest--which is absolutely delighted this morning with the rain---and I hear the birds singing their hearts out, I am so thankful for still being here. I find myself thinking only one thing: I want to live. Then I take a grateful deep breathe and realize: I am living right now. And it's good in spite of my body issues and complaints.
My doctor appointment is next week and through prayer and determination, I hope to have these symptoms under control and me looking good. After all, I have a new hairdo.
Johnny at the ChopShop
Next to the Cowgirl Hall of Fame is Johnny's eccentric and fun Chop Shop (and no it's not named after the independant film of the same name). His adorable and sweet mini-boxer greets you at the door with a smaile. In the 45 minutes, I was there a myriad of people stopped by. People from the street stuck their heads in to comment on the dog. People from the bar stopped in just to say hi. A seven year old girl, whose dad works as a bouncer at the door to the Cowgirl, hung out with us. It's social central.
And Johnny gives a great cut. Fun, hip and bless his heart on him (for me anyway). I've been seeing him for years---the man has talent. Check out him out http://www.chopshopsantafe.com/
And Johnny gives a great cut. Fun, hip and bless his heart on him (for me anyway). I've been seeing him for years---the man has talent. Check out him out http://www.chopshopsantafe.com/
Oh, the fun
My butt hurts. I'm pretty certain it's a result of the five days of antibiotics I just took. It started about day 2 or 3 of the course. It's not a pretty picture down there....piles and flaming, red, itchy, swollen inner butt cheeks. So please excuse me if I don't sit upright! I'm currently sitting on a piece of firm tofu which according to an acupuncturist friend absorbs heat from rashes (or at least this is what I understood). I'll let you know if it works.
There is good news. On Monday 6/26/10, my platelet count was 46. Today, Thursday, it is 23. It's not a bad drop. Also it would appear that my red blood cells held pretty well! It was so nice to get some decent blood news....don't get me wrong, all the numbers are still down, but not at such a fast rate and that seems like huge blessing. Perhaps I'm finally doing something right!
Even better than that is that we found out that the Tricore lab is open on Saturdays from 7-11am....which means that I can go there for tests on Saturday rather than braving the hospital, which is by far my least favorite place on the planet at the moment. The incompetency that I experienced there last Sunday was both mind-boggling and infuriating. I know I'm not supposed to get upset at their straight up ineptness, but it will suffice to say that they were supposed to have platelets ready for me at 9am and after three trips there, multiple phone calls, spending an inordinate amount of time at Registration TWICE, the platelets finally arrived at 4pm. Unbelievable.
And, after weeks of trying, I finally got to see an excellent professional lymph massage therapist. My swollen lymph node under my right armpit, which has been going on for about a month now, actually feels better after working with her. It gives me hope that I might not have to live with this unwelcome pain forever.
Small victories bring me hope.
There is good news. On Monday 6/26/10, my platelet count was 46. Today, Thursday, it is 23. It's not a bad drop. Also it would appear that my red blood cells held pretty well! It was so nice to get some decent blood news....don't get me wrong, all the numbers are still down, but not at such a fast rate and that seems like huge blessing. Perhaps I'm finally doing something right!
Even better than that is that we found out that the Tricore lab is open on Saturdays from 7-11am....which means that I can go there for tests on Saturday rather than braving the hospital, which is by far my least favorite place on the planet at the moment. The incompetency that I experienced there last Sunday was both mind-boggling and infuriating. I know I'm not supposed to get upset at their straight up ineptness, but it will suffice to say that they were supposed to have platelets ready for me at 9am and after three trips there, multiple phone calls, spending an inordinate amount of time at Registration TWICE, the platelets finally arrived at 4pm. Unbelievable.
And, after weeks of trying, I finally got to see an excellent professional lymph massage therapist. My swollen lymph node under my right armpit, which has been going on for about a month now, actually feels better after working with her. It gives me hope that I might not have to live with this unwelcome pain forever.
Small victories bring me hope.
Wednesday, June 30, 2010
Featured Healer: Maury Brooks
I have been blessed to have been offered several different kinds of healing sessions over the past month. Some of you that have offered, I have yet to contact (but I will). In combination with all of my doctor appointments, the first week or two I was so excited to try all of the different modalities offered by different practioners that I wore myself out. So now my goal is to have no more than one treatment session per day. There is such a thing as "too much of a good thing."
As thank you to the wonderful people who have volunteered their amazing services, I will feature each person along with their contact information in case any of you paying customers out there are interested.
Maury Brooks, qigong energy healer and movement instructor, emphasizes that the movement of energy does not require touch....or even proximity. That said, he kindly came over last night to offer me a treatment. He placed three purple ballons in various locations on my body, held by the weight of a blanket. Then he incorporated deep breathing, sound (which he played from his laptop) and energy work. The ballons amplify the vibration of the sound. My only job was to lay still and breathe.
At one point during the session he asks me "do you taste that?" as he stopped to get a drink of water. While I had recently finished one of my delicious bitter lettuce juices (please sense the sarcasm here) so the taste in my mouth wasn't exactly pleasant to begin with, I did get what he was saying. There was a slight metallic taste in the back of my mouth. How'd he know? Hmmm. Seems like magic to me.
Maury generously donated this two hour session to me. I definitely felt more energized after the session. If you are interested in contacting him for more information, check out his webpage http://www.qigong-healing.com/ or call him at 988.8951
Infomercial over.
As thank you to the wonderful people who have volunteered their amazing services, I will feature each person along with their contact information in case any of you paying customers out there are interested.
Maury Brooks, qigong energy healer and movement instructor, emphasizes that the movement of energy does not require touch....or even proximity. That said, he kindly came over last night to offer me a treatment. He placed three purple ballons in various locations on my body, held by the weight of a blanket. Then he incorporated deep breathing, sound (which he played from his laptop) and energy work. The ballons amplify the vibration of the sound. My only job was to lay still and breathe.
At one point during the session he asks me "do you taste that?" as he stopped to get a drink of water. While I had recently finished one of my delicious bitter lettuce juices (please sense the sarcasm here) so the taste in my mouth wasn't exactly pleasant to begin with, I did get what he was saying. There was a slight metallic taste in the back of my mouth. How'd he know? Hmmm. Seems like magic to me.
Maury generously donated this two hour session to me. I definitely felt more energized after the session. If you are interested in contacting him for more information, check out his webpage http://www.qigong-healing.com/ or call him at 988.8951
Infomercial over.
Tuesday, June 29, 2010
John Hopkins Update
AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY IS THE ONLY WAY TO TRY ('TRY', BEING THE KEY WORD) TO ELIMINATE CANCER, JOHNS HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY.
Cancer Update from Johns Hopkins:
1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size.
2. Cancer cells occur between 6 to more than 10 times in a person's lifetime.
3. When the person's immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors.
4. When a person has cancer it indicates the person has nutritional deficiencies. These could be due to genetic,but also to environmental, food and lifestyle factors.
5. To overcome the multiple nutritional deficiencies, changing diet to eat more adequately and healthy, 4-5 times/day and by including supplements will strengthen the immune system.
6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastrointestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc.
7. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs.
8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of
chemotherapy and radiation do not result in more tumor destruction.
9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either
compromised or destroyed, hence the person can succumb to various kinds of infections and complications.
10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.
11. An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply.
*CANCER CELLS FEED ON:
a. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses, but only in very small amounts. Table salt has a chemical added to make it white in color Better alternative is Bragg's aminos or sea salt.
b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soy milk cancer cells are being starved.
c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little other meat, like chicken. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer.
d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within 15 minutes to nourish and enhance growth of healthy cells. To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including be an sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C)..
e. Avoid coffee, tea, and chocolate, which have high caffeine Green tea is a better alternative e and has cancer fighting properties. Water-best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it.
12. Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in the intestines becomes putrefied and leads to more toxic buildup.
13. Cancer cell walls have a tough protein covering. By refraining from or eating less meat it frees more enzymes to attack the protein walls of cancer cells and allows the body's killer cells to destroy the cancer cells.
14. Some supplements build up the immune system (IP6, Flor-ssence, Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the bodies own killer cells to destroy cancer cells.. Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body's normal method of disposing of damaged, unwanted, or unneeded cells.
15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor. Anger, un-forgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life.
16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to
get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer
cells.
1. No plastic containers in micro.
2. No water bottles in freezer.
3. No plastic wrap in microwave..
Johns Hopkins has recently sent this out in its newsletters. This information is being circulated at Walter Reed Army Medical Center as well. Dioxin chemicals cause cancer, especially breast cancer. Dioxins are highly poisonous to the cells of our bodies. Don't freeze your plastic bottles with water in them as this releases dioxins from the plastic. Recently, Dr Edward Fujimoto, Wellness Program Manager at Castle Hospital , was on a TV program to explain this health hazard. He talked about dioxins and how bad they are for us. He said that we should not be heating our food in the microwave using plastic containers. This especially applies to foods that contain fat. He said that the combination of fat, high heat, and plastics releases dioxin into the food and ultimately into the cells of the body. Instead, he recommends using glass, such as Corning Ware, Pyrex or ceramic containers for heating food. You get the same results, only without the dioxin. So such things as TV dinners, instant ramen and soups, etc., should be removed from the container and heated in something else. Paper isn't bad but you don't know what is in the paper. It's just safer to use tempered glass, Corning Ware, etc. He reminded us that a while ago some of the fast food restaurants moved away from the foam containers to paper The dioxin problem is one of the reasons.
Please share this with your whole email list.........................
Also, he pointed out that plastic wrap, such as Saran, is just as dangerous when placed over foods to be cooked in the microwave. As the food is nuked, the high heat causes poisonous toxins to actually melt out of the plastic wrap and drip into the food. Cover food with a paper towel instead.
Cancer Update from Johns Hopkins:
1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size.
2. Cancer cells occur between 6 to more than 10 times in a person's lifetime.
3. When the person's immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors.
4. When a person has cancer it indicates the person has nutritional deficiencies. These could be due to genetic,but also to environmental, food and lifestyle factors.
5. To overcome the multiple nutritional deficiencies, changing diet to eat more adequately and healthy, 4-5 times/day and by including supplements will strengthen the immune system.
6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastrointestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc.
7. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs.
8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of
chemotherapy and radiation do not result in more tumor destruction.
9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either
compromised or destroyed, hence the person can succumb to various kinds of infections and complications.
10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.
11. An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply.
*CANCER CELLS FEED ON:
a. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses, but only in very small amounts. Table salt has a chemical added to make it white in color Better alternative is Bragg's aminos or sea salt.
b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soy milk cancer cells are being starved.
c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little other meat, like chicken. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer.
d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within 15 minutes to nourish and enhance growth of healthy cells. To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including be an sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C)..
e. Avoid coffee, tea, and chocolate, which have high caffeine Green tea is a better alternative e and has cancer fighting properties. Water-best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it.
12. Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in the intestines becomes putrefied and leads to more toxic buildup.
13. Cancer cell walls have a tough protein covering. By refraining from or eating less meat it frees more enzymes to attack the protein walls of cancer cells and allows the body's killer cells to destroy the cancer cells.
14. Some supplements build up the immune system (IP6, Flor-ssence, Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the bodies own killer cells to destroy cancer cells.. Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body's normal method of disposing of damaged, unwanted, or unneeded cells.
15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor. Anger, un-forgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life.
16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to
get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer
cells.
1. No plastic containers in micro.
2. No water bottles in freezer.
3. No plastic wrap in microwave..
Johns Hopkins has recently sent this out in its newsletters. This information is being circulated at Walter Reed Army Medical Center as well. Dioxin chemicals cause cancer, especially breast cancer. Dioxins are highly poisonous to the cells of our bodies. Don't freeze your plastic bottles with water in them as this releases dioxins from the plastic. Recently, Dr Edward Fujimoto, Wellness Program Manager at Castle Hospital , was on a TV program to explain this health hazard. He talked about dioxins and how bad they are for us. He said that we should not be heating our food in the microwave using plastic containers. This especially applies to foods that contain fat. He said that the combination of fat, high heat, and plastics releases dioxin into the food and ultimately into the cells of the body. Instead, he recommends using glass, such as Corning Ware, Pyrex or ceramic containers for heating food. You get the same results, only without the dioxin. So such things as TV dinners, instant ramen and soups, etc., should be removed from the container and heated in something else. Paper isn't bad but you don't know what is in the paper. It's just safer to use tempered glass, Corning Ware, etc. He reminded us that a while ago some of the fast food restaurants moved away from the foam containers to paper The dioxin problem is one of the reasons.
Please share this with your whole email list.........................
Also, he pointed out that plastic wrap, such as Saran, is just as dangerous when placed over foods to be cooked in the microwave. As the food is nuked, the high heat causes poisonous toxins to actually melt out of the plastic wrap and drip into the food. Cover food with a paper towel instead.
Monday, June 28, 2010
The Challenge of Asking
I did not ask for this disease or this situation.
I did ask the Universe for the opportunity to repair certain relationships in my life.
The Universe is a fickle friend, I suppose. I got both things I asked and didn't ask for.
I have on my hands a literal fight for my life.
The astrologers say the verdict is out, whether I'll make it or not.
I'm personally determined to live.
While I conserve my energy for endless doctor appointments and self healing, I am forced into a position where I have to ask. This is a new place for me. I have always been fiercely independant and self-reliant.
Now I have to ask for help with nearly every activity that I once took for granted.
It is not an easy place for me to be, but I suppose it too is a good lesson.
From the bottom of my heart, I want to thank you all for your ongoing love and support. I want to thank you for not minding me asking for help. I want to thank you for everything.
I did ask the Universe for the opportunity to repair certain relationships in my life.
The Universe is a fickle friend, I suppose. I got both things I asked and didn't ask for.
I have on my hands a literal fight for my life.
The astrologers say the verdict is out, whether I'll make it or not.
I'm personally determined to live.
While I conserve my energy for endless doctor appointments and self healing, I am forced into a position where I have to ask. This is a new place for me. I have always been fiercely independant and self-reliant.
Now I have to ask for help with nearly every activity that I once took for granted.
It is not an easy place for me to be, but I suppose it too is a good lesson.
From the bottom of my heart, I want to thank you all for your ongoing love and support. I want to thank you for not minding me asking for help. I want to thank you for everything.
Sunday, June 27, 2010
The Search For Housing Begins....my place expires August 10
My donated housing situation, as many of you know, has been a blessing beyond belief. Lauren Hunt and her husband Brad have been absolutely fantastic and any ideas on how to thank them profusely and profoundly would be appreciated.
That said, I have to move out of this lovely refuge by August 10 at the latest. Perhaps the weekend before makes more sense logistically for anyone willing to help me move?
What this means: I need a new non-toxic place to live by August 10. Ideally, the place would be similar to this one: quiet, clean, centrally located, washer/dryer, dishwashter, warm in the winter, bathtub, etc. etc. Even more ideal would be a low or no rent situation, since I have no income at this time or in the foreseeable future. All things, of course, are negotiable.
So, please, keep your eyes, ears and hearts open and let me know if you hear of anything or have any ideas. Thank you and blessings. You can email me directly at fieldofcosmos@gmail.com
COMPUTER ISSUES (again!)
Someone in their efforts to help me "clean up" my computer discarded (as far as I can tell) my Microsoft Office suite 2003 including my word and excel programs. Somewhere in the depths of my storage unit that only my Aunt Judy understands are the disks to upload the program. Judy is on vacation until mid-July. This is extremely unfortunate as I was just about to sit down and finalize my 2009 tax stuff for my accountant (running a bit late here) AND I was going to enter all of my bloodwork into a spreadsheet so that I might be able to really track the ups (hurrah!) and downs (dang em!) of my blood counts. If you have skills in computers or those Microsoft Office files or at the very least data entry skills (ie of bloodwork), and would be willing to help out, please let me know asap. fieldofcosmos@gmail.com
PS. The magnetic mattress is 2 outta 3 so far. For a person who has not slept the whole night through since April, 2 nights of uninterrupted sleep has been a huge blessing. The night that I didn't sleep well? I had, um, uncomfortable body issues of the GI nature combined with the full moon. Will see what happens tonight.....
That said, I have to move out of this lovely refuge by August 10 at the latest. Perhaps the weekend before makes more sense logistically for anyone willing to help me move?
What this means: I need a new non-toxic place to live by August 10. Ideally, the place would be similar to this one: quiet, clean, centrally located, washer/dryer, dishwashter, warm in the winter, bathtub, etc. etc. Even more ideal would be a low or no rent situation, since I have no income at this time or in the foreseeable future. All things, of course, are negotiable.
So, please, keep your eyes, ears and hearts open and let me know if you hear of anything or have any ideas. Thank you and blessings. You can email me directly at fieldofcosmos@gmail.com
COMPUTER ISSUES (again!)
Someone in their efforts to help me "clean up" my computer discarded (as far as I can tell) my Microsoft Office suite 2003 including my word and excel programs. Somewhere in the depths of my storage unit that only my Aunt Judy understands are the disks to upload the program. Judy is on vacation until mid-July. This is extremely unfortunate as I was just about to sit down and finalize my 2009 tax stuff for my accountant (running a bit late here) AND I was going to enter all of my bloodwork into a spreadsheet so that I might be able to really track the ups (hurrah!) and downs (dang em!) of my blood counts. If you have skills in computers or those Microsoft Office files or at the very least data entry skills (ie of bloodwork), and would be willing to help out, please let me know asap. fieldofcosmos@gmail.com
PS. The magnetic mattress is 2 outta 3 so far. For a person who has not slept the whole night through since April, 2 nights of uninterrupted sleep has been a huge blessing. The night that I didn't sleep well? I had, um, uncomfortable body issues of the GI nature combined with the full moon. Will see what happens tonight.....
Friday, June 25, 2010
Blood Update & the Magical Mattress Pad
Wednesday (after both blood and platelet transfusion on Tuesday):
platelets 43 wbc 1.2 rbc 3.77
Friday
platelets 23 wbc 1.3 rbc 3.85!!!! (this is great! rbc & wbc on the rise!)
What this means: Platelet transfusion on Sunday.
I still have my "good" days and my "bad" days. Today I'm a bit better. Wednesday after the transfusions was a bit rough.
In the meantime, I've purchased a very fancy smancy magnetic mattress. It's amazing the things you learn from people. I've heard about several miraculous results. So why not? From their website:
Why do you need magnetism?
Science has established beyond all doubt that all living cells are electromagnetic by nature. There are only two natural sources of magnetism available to you: your brain and the Earth. Eighty percent of the human brain is composed of Astrocyte cells. These cells have the capacity to generate electricity and produce a pulsed, electro-magnetic field with efficiency. The Earth is your other source of magnetism. It provides a supportive, steady state, magnetic field, which your body draws on to enhance molecular reactions. These two magnetic fields work together to accomplish magnetic resonance, which dramatically enhances the chemical reactions of the body. 4
Magnetic Resonance
Magnetic resonance occurs when the brain’s pulsed magnetic frequency matches the frequencies of various tissues and organs. 4 This is accomplished in 90-100 minute cycles, mostly while we sleep. Resonance will usually maintain a given frequency for a few seconds up to a few minutes. This range depends on the urgency and degree of repair or restoration needed. Magnetic resonance is desirable because it helps repair damage done to cells, makes enzymes, and enhances immunity. 4,5
Why do we need to augment naturally occurring magnetism?
There are two major factors adversely affecting magnetic resonance. First, a gradual cyclic decline in our geomagnetic field has left the atoms of our bodies in a lower energy state, making it more difficult for magnetic resonance to occur. 6 It is estimated that we have lost 80% of our magnetic field in the last 4000 years. 7,8,9,10
Second, in this technological age, the outside electromagnetic frequencies your body is exposed to are higher and stronger than ever before. As a result, these frequencies override the vital brain function of magnetic resonance with your organs and tissues. 11 This interference leaves you in a fatigued state that, over an extended period, can contribute to the development of chronic ailments. This development is due, in part, to a lack of restorative resonance. 11
How can you restore the magnetic field your body needs?
These deficiency states can be overcome by exposing your body to an enhanced steady state, magnetic field (much like the Earth’s) during sleep. In North America, the magnetic field must be pure negative and completely pass through the body in order to complement the negative field of the Northern Hemisphere. 11 By using our patented Magnetico Sleep Pad, you ensure your body will receive the right direction of magnetic energy, which is essential for organ and tissue restoration.
Study Validates Increased Detoxification
A clinical pilot study of thirteen subjects was conducted by an independent private physician. The study supports the increased detoxification capability associated with the Magnetico Sleep Pad, Super Model (20 gauss). This involved three urine challenge tests, all analyzed by an independent lab.
1.Baseline levels, taken three days before any treatment.
2.After one night on the Magnetico Sleep Pad.
3.After the second night on the Magnetico Sleep Pad plus taking one 500 mg DMSA capsule.
Results:
Excretion levels of toxic metals after one night on the Magnetico Sleep Pad compared to Baseline Levels:
Weighted Averages: Arsenic -31.66%
Lead -22.18%
Mercury -28%
Nickel -6.6%
Tin -10.44%
Excretion levels of toxic metals after a second night on a Magnetico Sleep Pad and 500 mg of DMSA taken at bedtime, compared to Baseline Levels:
Weighted Averages: Arsenic -16.7%
Lead -80.58%
Mercury -45.6%
Nickel -4.15%
Tin -57.72%
Think about it, what a simple way to assist in good health.... It’s as easy as going to bed! Sleep is all about restoring, repairing, rebuilding, healing and in children-growing. Those magnets just keep going and going, helping you on your way to health every single night! Your satisfaction is guaranteed.
platelets 43 wbc 1.2 rbc 3.77
Friday
platelets 23 wbc 1.3 rbc 3.85!!!! (this is great! rbc & wbc on the rise!)
What this means: Platelet transfusion on Sunday.
I still have my "good" days and my "bad" days. Today I'm a bit better. Wednesday after the transfusions was a bit rough.
In the meantime, I've purchased a very fancy smancy magnetic mattress. It's amazing the things you learn from people. I've heard about several miraculous results. So why not? From their website:
Why do you need magnetism?
Science has established beyond all doubt that all living cells are electromagnetic by nature. There are only two natural sources of magnetism available to you: your brain and the Earth. Eighty percent of the human brain is composed of Astrocyte cells. These cells have the capacity to generate electricity and produce a pulsed, electro-magnetic field with efficiency. The Earth is your other source of magnetism. It provides a supportive, steady state, magnetic field, which your body draws on to enhance molecular reactions. These two magnetic fields work together to accomplish magnetic resonance, which dramatically enhances the chemical reactions of the body. 4
Magnetic Resonance
Magnetic resonance occurs when the brain’s pulsed magnetic frequency matches the frequencies of various tissues and organs. 4 This is accomplished in 90-100 minute cycles, mostly while we sleep. Resonance will usually maintain a given frequency for a few seconds up to a few minutes. This range depends on the urgency and degree of repair or restoration needed. Magnetic resonance is desirable because it helps repair damage done to cells, makes enzymes, and enhances immunity. 4,5
Why do we need to augment naturally occurring magnetism?
There are two major factors adversely affecting magnetic resonance. First, a gradual cyclic decline in our geomagnetic field has left the atoms of our bodies in a lower energy state, making it more difficult for magnetic resonance to occur. 6 It is estimated that we have lost 80% of our magnetic field in the last 4000 years. 7,8,9,10
Second, in this technological age, the outside electromagnetic frequencies your body is exposed to are higher and stronger than ever before. As a result, these frequencies override the vital brain function of magnetic resonance with your organs and tissues. 11 This interference leaves you in a fatigued state that, over an extended period, can contribute to the development of chronic ailments. This development is due, in part, to a lack of restorative resonance. 11
How can you restore the magnetic field your body needs?
These deficiency states can be overcome by exposing your body to an enhanced steady state, magnetic field (much like the Earth’s) during sleep. In North America, the magnetic field must be pure negative and completely pass through the body in order to complement the negative field of the Northern Hemisphere. 11 By using our patented Magnetico Sleep Pad, you ensure your body will receive the right direction of magnetic energy, which is essential for organ and tissue restoration.
Study Validates Increased Detoxification
A clinical pilot study of thirteen subjects was conducted by an independent private physician. The study supports the increased detoxification capability associated with the Magnetico Sleep Pad, Super Model (20 gauss). This involved three urine challenge tests, all analyzed by an independent lab.
1.Baseline levels, taken three days before any treatment.
2.After one night on the Magnetico Sleep Pad.
3.After the second night on the Magnetico Sleep Pad plus taking one 500 mg DMSA capsule.
Results:
Excretion levels of toxic metals after one night on the Magnetico Sleep Pad compared to Baseline Levels:
Weighted Averages: Arsenic -31.66%
Lead -22.18%
Mercury -28%
Nickel -6.6%
Tin -10.44%
Excretion levels of toxic metals after a second night on a Magnetico Sleep Pad and 500 mg of DMSA taken at bedtime, compared to Baseline Levels:
Weighted Averages: Arsenic -16.7%
Lead -80.58%
Mercury -45.6%
Nickel -4.15%
Tin -57.72%
Think about it, what a simple way to assist in good health.... It’s as easy as going to bed! Sleep is all about restoring, repairing, rebuilding, healing and in children-growing. Those magnets just keep going and going, helping you on your way to health every single night! Your satisfaction is guaranteed.
Tuesday, June 22, 2010
Another email from Marla
Hello Karen:
I haven't had my CBC taken in over 2 years now. But prior to stopping my CBCs all my numbers, I think, are documented on my website. During that time, I also did two full years of phlebotomy to get my iron overload down to normal. During those two years of full phlebotomies, my hgb remained in the normal ranges (even as high as 15s at one point). As far as I know my counts are normal, except my plts never went higher than 118K, but remained steady there for years.
I no longer juice, except if I get sick or something, which isn't often. My diet is a lot different now than during recovery. But still mostly organic and still not much junk food. I say that because I do on occasion have some dessert of cookies or a pic of cake or muffin. I think I'm more of an herbal tea drinker now, than a juice drinker. . .
As far as juicing regime, I would probably make changes. I think the list you got was already modified from during my recovery phase. I see what you listed was in Jan 2002 and my last blood transfusion was in 2001. So this was definitely a phase where I was modifying my regime. I "don't" recommend one cup of orange juice daily and didn't do that in the beginning as well. I think that came about as I was learning about vit C from Dr. Rath. I since come to believe that it may be too much to have 1 full cup of orange juice every single day. If you look at the May 2002 example menu, you'll see that I changed more and there is no orange juice there. The other juices I drank during recovery were a combo of carrot, romaine and celery or cucumber, sometimes with half an apple. I did not juice beets regularly. Again, that must have been what I was doing during that phase of my tweeting my diet to try to tease out more results. You may also notice that I started to add meat back in by May and that's when I started to see more improvements especially with my reds. You may notice that by April 2003, I has stopped juicing and had added more meat products. To get a better understanding of why I decided upon the changes I did, you can check out the book list that I had read during that time.
I tried a lot of things especially in the beginning. so if you look at the page of my treatment, there is a section where I write about what I "eliminated." This might help you get an idea of what else I tried and what and why I stopped them. But to re-iterate, all my juices in the beginning consisted of carrot, romaine, celery or cucumber, and half an apple or so and barley green mixed in. I would basically put a measuring cup under the juicer and see that it filled at least the full cup. In the beginning I followed Dr.Lorraine Day's protocal of 8 glasses of juice a day and I even went beyond to about 13! But I later cut back to 4 a day, which I think I more practical (each drink being 2 cups worth--i.e. 2 cups 4xday). Looking back in retrospect, I can see how it's confusing. There was so much that I may have taken some info for granted! Especially the juice combo in the early phase. By the time I had started my website, I was pretty much transfusion free and just trying to document it for anyone interested. I did not list my counts while transfusion dependent because I didn't feel those mattered because the blood wasn't mine, but transfused blood.
Oh, and one last thing, the lemon water. . . I did do that for a couple years, but later became sensitive to lemons! So I don't recommend it every single day like I did it. My sensitivity came in "hives." I have since stopped it, and find that I can only take lemon water for about two weeks when the hives start to come back. So easy with the lemons. . .
Okay, I hope that's more clear! If not, let me know.
Take care!
Marla
I haven't had my CBC taken in over 2 years now. But prior to stopping my CBCs all my numbers, I think, are documented on my website. During that time, I also did two full years of phlebotomy to get my iron overload down to normal. During those two years of full phlebotomies, my hgb remained in the normal ranges (even as high as 15s at one point). As far as I know my counts are normal, except my plts never went higher than 118K, but remained steady there for years.
I no longer juice, except if I get sick or something, which isn't often. My diet is a lot different now than during recovery. But still mostly organic and still not much junk food. I say that because I do on occasion have some dessert of cookies or a pic of cake or muffin. I think I'm more of an herbal tea drinker now, than a juice drinker. . .
As far as juicing regime, I would probably make changes. I think the list you got was already modified from during my recovery phase. I see what you listed was in Jan 2002 and my last blood transfusion was in 2001. So this was definitely a phase where I was modifying my regime. I "don't" recommend one cup of orange juice daily and didn't do that in the beginning as well. I think that came about as I was learning about vit C from Dr. Rath. I since come to believe that it may be too much to have 1 full cup of orange juice every single day. If you look at the May 2002 example menu, you'll see that I changed more and there is no orange juice there. The other juices I drank during recovery were a combo of carrot, romaine and celery or cucumber, sometimes with half an apple. I did not juice beets regularly. Again, that must have been what I was doing during that phase of my tweeting my diet to try to tease out more results. You may also notice that I started to add meat back in by May and that's when I started to see more improvements especially with my reds. You may notice that by April 2003, I has stopped juicing and had added more meat products. To get a better understanding of why I decided upon the changes I did, you can check out the book list that I had read during that time.
I tried a lot of things especially in the beginning. so if you look at the page of my treatment, there is a section where I write about what I "eliminated." This might help you get an idea of what else I tried and what and why I stopped them. But to re-iterate, all my juices in the beginning consisted of carrot, romaine, celery or cucumber, and half an apple or so and barley green mixed in. I would basically put a measuring cup under the juicer and see that it filled at least the full cup. In the beginning I followed Dr.Lorraine Day's protocal of 8 glasses of juice a day and I even went beyond to about 13! But I later cut back to 4 a day, which I think I more practical (each drink being 2 cups worth--i.e. 2 cups 4xday). Looking back in retrospect, I can see how it's confusing. There was so much that I may have taken some info for granted! Especially the juice combo in the early phase. By the time I had started my website, I was pretty much transfusion free and just trying to document it for anyone interested. I did not list my counts while transfusion dependent because I didn't feel those mattered because the blood wasn't mine, but transfused blood.
Oh, and one last thing, the lemon water. . . I did do that for a couple years, but later became sensitive to lemons! So I don't recommend it every single day like I did it. My sensitivity came in "hives." I have since stopped it, and find that I can only take lemon water for about two weeks when the hives start to come back. So easy with the lemons. . .
Okay, I hope that's more clear! If not, let me know.
Take care!
Marla
numbers numbers numbers
Last Platelet Transfusion was on Wednesday.
Platelet counts:
Thursday 59! Friday 32 Monday 10 :(
Thus I'll be getting a platelet transfusion tomorrow unless (dear god) they don't drop from 10. That would be great! I'm actually feeling ok at 10. I decided to forego the blood transfusion that was scheduled for today (today is day 16 since the last blood transfusion). The red blood numbers aren't NORMAL by any account, BUT they seem to be holding ok. The goal here is to become transfusion free and in the meantime to space them out as far as possible as long as I feel ok. I'm not interested in crashing and burning. I am interested in encouragning the body to make it's own darn stuff and to stop relying on other people's blood.
RBC (red blood cell count): Friday 3.09 today 2.98 NORMAL 4.06-5.21
hemoglobin fri 9.2 today 9.2 :) NORMAL 12.5-16.6
hemocrit fri 26 today 25.2 small loss :) NORMAL 37-49
WBC Friday 1.4 today 1.2 :( NORMAL 4-10.6
I've only been on the juicing program for a few days now, but the reds are looking better. A very kind person made me two kinds of bone broth soup over the weekend and I suspect this has also helped my blood numbers.
No more sad movies. I managed again! to pick one out last night on a kid who died too young tear jerker. Only movies that make me laugh for now on! If you don't have any to contribute, please make recommendations and I'll see if I can get them on Netflix.
Platelet counts:
Thursday 59! Friday 32 Monday 10 :(
Thus I'll be getting a platelet transfusion tomorrow unless (dear god) they don't drop from 10. That would be great! I'm actually feeling ok at 10. I decided to forego the blood transfusion that was scheduled for today (today is day 16 since the last blood transfusion). The red blood numbers aren't NORMAL by any account, BUT they seem to be holding ok. The goal here is to become transfusion free and in the meantime to space them out as far as possible as long as I feel ok. I'm not interested in crashing and burning. I am interested in encouragning the body to make it's own darn stuff and to stop relying on other people's blood.
RBC (red blood cell count): Friday 3.09 today 2.98 NORMAL 4.06-5.21
hemoglobin fri 9.2 today 9.2 :) NORMAL 12.5-16.6
hemocrit fri 26 today 25.2 small loss :) NORMAL 37-49
WBC Friday 1.4 today 1.2 :( NORMAL 4-10.6
I've only been on the juicing program for a few days now, but the reds are looking better. A very kind person made me two kinds of bone broth soup over the weekend and I suspect this has also helped my blood numbers.
No more sad movies. I managed again! to pick one out last night on a kid who died too young tear jerker. Only movies that make me laugh for now on! If you don't have any to contribute, please make recommendations and I'll see if I can get them on Netflix.
Monday, June 21, 2010
Another Email from Marla, AA survivor & Her Story
Hello Karen:
I was transfusion dependent for 19 months. I got off the plt transfusions around 17 months. As far as how long it took me to see changes in my counts after changing my diet, I would say about a month or so after AA diagnosis, I was starting to learn to read the CBCs better, and that's when I noticed the first changes (improvements) were with the differentials of my white count. I had zip neutrophils early on, and while the total WBC remained low fro months, I could clearly see the differentials righting themselves even though I continued on to be transfusion dependent for months. At diagnosis my plt count was 1K. I noticed about a year later that my plts started to hold at around 4K, then a few months later 5K, then 8K. That is the point where I stopped taking plt transfusions. Then slowly month after month it started to continue to rise into the safer ranges. At around 19 months after diagnosis, my reds started to hoover in the 7 hbg, and that's where I stopped taking red transfusions. Then when I added meats back into my diet, the reds really jumped up quickly.
The similarities to me and Akshay is that both of us did not take the standard immunosuppressant therapies, and it took us about the same length of time to recover our counts. The differences is that he had issues with low calcium and fragile bones. I can't say exactly what his diet consisted of, as we never really discussed that too much. And I know he did take some homeopathy, which I did not. And I think he didn't start to juice until later in his recovery. I'm sure his parents would be happy to share more information with you regarding his treatment.
Other differences is that Akshay was diagnosed with some sort of hepatitis before he developed AA. I was not. His hep cause was unknown. Also I have had a life-long issue with skin problems for which I took medications and likely weakened my immune system and adrenals, etc. I don't think Akshay had that problem. Plus I am much older than he is. I think he's about 12 now? or so, and I am now 45. I was 34 at diagnosis. My last transfusion was in 2001 July 6.
Okay, hope that helps answer your questions! Thanks for sharing more info about yourself. I hope you keep in touch and if there is any more info that I can help you with, feel free to ask! I think my story on my webpage gives more details of what I went through, including the heavy female bleeding. (again, something Akshay didn't have to deal with).
All the best! Take care!
Marla
Marla's Story from her website:
How my aplastic anemia (AA) began or when it began remains unknown. However, it made its presence known to me in October of 1999. My very first symptoms appeared before I knew I was in trouble. It happened on a Monday while I was putting a file away at work. I sliced my finger on a file and put a bandage on the finger. But, I noticed about an hour or so later that the bandage on my finger was pretty drenched with blood. I thought that was odd because I had cuts like that before and never bled that much. I even made a joke about it saying that my finger looked like it was going to explode so, "stand back!" That same day, I developed a bruise on my left leg. By Wednesday, I woke up with these little red spots all over my legs, hands, and feet. (Which I later learned were petechia marks--bleeding under the skin.) I also noticed more bruising which looked unusual. Thursday night, I noticed unusual gum bleeding after I brushed my teeth. On Friday morning, the gum bleeding was more intense. While I was driving to work, I tasted a saltiness in my mouth. I looked in my rear view mirror at my teeth only to shock myself with all the blood I saw in my mouth. Still, it was payday and Friday, so on I continued and worked the full day. The next morning was Saturday. I woke up to yet another surprise of about 10 bruises on my legs, more bruises on my feet, arms, and hands. Alarmed, I woke my husband up to tell him to look at me, and he said as we were speaking, "You're getting another one on your hand." Bruises were developing on my body right before our eyes. Okay, now I was freaked out.
I ended up in ER that day. A blood test had shown that my platelets were at 1,000. Normal platelet levels are between 150,000-400,000. Someone had stolen mine!! I was admitted to the hospital (thinking that they could help me find my platelets), and the next day I had a bone marrow biopsy and aspiration. ("Wowsy". . .That's about all you probably want to hear about that.) I stayed in the hospital for a week, and during that time, I had steroids, my first platelet transfusion, a diagnosis of a prolapsed mitral valve (heart valve problem) and aplastic anemia. Now things were starting to overwhelm me, and I wouldn't consent to any specific treatment, so I was told to go home and come in to the doctor's office in a couple days.
A complete blood count (CBC) taken at the doctor's office indicated that my blood levels were continuing to drop. Before the week ended, I was back in ER with an infection in my gums and on my right arm where the IV site was of my second platelet transfusion. This time, my hemoglobin was 5.0 (normal range for a woman is 12-16), white count was .5 (normal range is 4-11), ANC of 0, and platelets, after a transfusion, was 5,000. Once again I was admitted to the hospital. During this stay, I got the pleasure of receiving IV antibiotics, my first red blood cell transfusion with chills, more platelet transfusions with hives, hormones to try to stop my menstrual cycle which had already begun, a not so lovely PICC line, and was told that I was already refractory (not responding) to platelets. I went home from this stay with Provera (hormone to prevent menstrual cycle) and a prescription for a three months supply of Ciproflaxin aka Cipro (antibiotic).
I still did not want conventional medical treatment for my AA, so for about three months, I had supportive care wherein I accepted red blood and platelet transfusions via my PICC line. I was getting platelet transfusions almost every other day, and red cell transfusions almost every week. But, alas, my PICC line site became infected and had to be removed. I found myself once again looking out the window of a hospital room while I laid on the hospital bed with more IV antibiotics pumping through my veins, and my arm where a PICC line once resided, wrapped in a heating pad. I was running a fever that reached 106 degrees because of the infection in my arm. I had develop cellulitis on that arm which made my arm twice its normal size and very painful. My arm had developed a huge rash, was peeling, hot to the touch, hard, and inflamed. I was released from the hospital after a week and sent home with IV antibiotics which was to be administered to me for another week with a home health service. After a week of the home IV antibiotic, I was to take another week of oral antibiotic, Doxycycline.
I continued for another five months with weekly transfusions of both platelets and red cells until my menstrual cycle got the fine idea of trying to allow my body to drain it's blood supply via my uterus. So, I ended up in ER and was admitted to the hospital again where I stayed a few days to get my menstrual cycle under control and my body tanked up with more blood so I would resemble a live person. This time, I was sent home with birth control pills, Demulin, to control my female cycle. I was not to take the placebos so that I wouldn't have a cycle at all. Well, things didn't work out as planned. I started my menstrual cycle again anyway, but this time it was even heavier than before and lasted for about a month! Of course my transfusion rate increased at this time because the blood was being pumped into my veins while at the same time just dropping out through my period. (I guess my exit door had been left wide open.) After going through this nonsense for about a month, I had a transfusion on a Friday, and by Monday, I had to be taken to the hospital by ambulance. My hemoglobin level had dropped down to 3.7. (I know others have been able to walk into the hospital with this level, but I guess with all this fast yo-yoing of blood in-blood out business, I could not get up without starting to black out. I just wanted to be left alone to die by then, but my family wouldn't have it.) At this point, I didn't care anymore. I was so tired. I accepted to have an endometrial ablation done to stop the bleeding and had more transfusions, but that was all. The endometrial ablation was done, I got tanked up again with blood, and I was sent home again to continue my exciting life of regular visits to the doctor for CBC's and visits to the Procedure Center for transfusions.
Eleven months later on July 6, 2001, after using 89 units of platelets and 86 units of red cells, I received my last transfusion. (Although I didn't know it at the time.) After a total of 19 months, my hemoglobin started to hover in the 7's, and my platelets remained above 10K. I was very functional and asymptomatic at this level, so my poor little veins finally got the long needed rest it deserved. Finally! Progress!
She continues with CBC (blood counts) and the ups and downs she went through. However, as of now, she hasn't had a transfusion in over 8 years. She is, in my humble opinion, a brave and remarkable woman.
Some of you have requested My Story. It's coming.
I was transfusion dependent for 19 months. I got off the plt transfusions around 17 months. As far as how long it took me to see changes in my counts after changing my diet, I would say about a month or so after AA diagnosis, I was starting to learn to read the CBCs better, and that's when I noticed the first changes (improvements) were with the differentials of my white count. I had zip neutrophils early on, and while the total WBC remained low fro months, I could clearly see the differentials righting themselves even though I continued on to be transfusion dependent for months. At diagnosis my plt count was 1K. I noticed about a year later that my plts started to hold at around 4K, then a few months later 5K, then 8K. That is the point where I stopped taking plt transfusions. Then slowly month after month it started to continue to rise into the safer ranges. At around 19 months after diagnosis, my reds started to hoover in the 7 hbg, and that's where I stopped taking red transfusions. Then when I added meats back into my diet, the reds really jumped up quickly.
The similarities to me and Akshay is that both of us did not take the standard immunosuppressant therapies, and it took us about the same length of time to recover our counts. The differences is that he had issues with low calcium and fragile bones. I can't say exactly what his diet consisted of, as we never really discussed that too much. And I know he did take some homeopathy, which I did not. And I think he didn't start to juice until later in his recovery. I'm sure his parents would be happy to share more information with you regarding his treatment.
Other differences is that Akshay was diagnosed with some sort of hepatitis before he developed AA. I was not. His hep cause was unknown. Also I have had a life-long issue with skin problems for which I took medications and likely weakened my immune system and adrenals, etc. I don't think Akshay had that problem. Plus I am much older than he is. I think he's about 12 now? or so, and I am now 45. I was 34 at diagnosis. My last transfusion was in 2001 July 6.
Okay, hope that helps answer your questions! Thanks for sharing more info about yourself. I hope you keep in touch and if there is any more info that I can help you with, feel free to ask! I think my story on my webpage gives more details of what I went through, including the heavy female bleeding. (again, something Akshay didn't have to deal with).
All the best! Take care!
Marla
Marla's Story from her website:
How my aplastic anemia (AA) began or when it began remains unknown. However, it made its presence known to me in October of 1999. My very first symptoms appeared before I knew I was in trouble. It happened on a Monday while I was putting a file away at work. I sliced my finger on a file and put a bandage on the finger. But, I noticed about an hour or so later that the bandage on my finger was pretty drenched with blood. I thought that was odd because I had cuts like that before and never bled that much. I even made a joke about it saying that my finger looked like it was going to explode so, "stand back!" That same day, I developed a bruise on my left leg. By Wednesday, I woke up with these little red spots all over my legs, hands, and feet. (Which I later learned were petechia marks--bleeding under the skin.) I also noticed more bruising which looked unusual. Thursday night, I noticed unusual gum bleeding after I brushed my teeth. On Friday morning, the gum bleeding was more intense. While I was driving to work, I tasted a saltiness in my mouth. I looked in my rear view mirror at my teeth only to shock myself with all the blood I saw in my mouth. Still, it was payday and Friday, so on I continued and worked the full day. The next morning was Saturday. I woke up to yet another surprise of about 10 bruises on my legs, more bruises on my feet, arms, and hands. Alarmed, I woke my husband up to tell him to look at me, and he said as we were speaking, "You're getting another one on your hand." Bruises were developing on my body right before our eyes. Okay, now I was freaked out.
I ended up in ER that day. A blood test had shown that my platelets were at 1,000. Normal platelet levels are between 150,000-400,000. Someone had stolen mine!! I was admitted to the hospital (thinking that they could help me find my platelets), and the next day I had a bone marrow biopsy and aspiration. ("Wowsy". . .That's about all you probably want to hear about that.) I stayed in the hospital for a week, and during that time, I had steroids, my first platelet transfusion, a diagnosis of a prolapsed mitral valve (heart valve problem) and aplastic anemia. Now things were starting to overwhelm me, and I wouldn't consent to any specific treatment, so I was told to go home and come in to the doctor's office in a couple days.
A complete blood count (CBC) taken at the doctor's office indicated that my blood levels were continuing to drop. Before the week ended, I was back in ER with an infection in my gums and on my right arm where the IV site was of my second platelet transfusion. This time, my hemoglobin was 5.0 (normal range for a woman is 12-16), white count was .5 (normal range is 4-11), ANC of 0, and platelets, after a transfusion, was 5,000. Once again I was admitted to the hospital. During this stay, I got the pleasure of receiving IV antibiotics, my first red blood cell transfusion with chills, more platelet transfusions with hives, hormones to try to stop my menstrual cycle which had already begun, a not so lovely PICC line, and was told that I was already refractory (not responding) to platelets. I went home from this stay with Provera (hormone to prevent menstrual cycle) and a prescription for a three months supply of Ciproflaxin aka Cipro (antibiotic).
I still did not want conventional medical treatment for my AA, so for about three months, I had supportive care wherein I accepted red blood and platelet transfusions via my PICC line. I was getting platelet transfusions almost every other day, and red cell transfusions almost every week. But, alas, my PICC line site became infected and had to be removed. I found myself once again looking out the window of a hospital room while I laid on the hospital bed with more IV antibiotics pumping through my veins, and my arm where a PICC line once resided, wrapped in a heating pad. I was running a fever that reached 106 degrees because of the infection in my arm. I had develop cellulitis on that arm which made my arm twice its normal size and very painful. My arm had developed a huge rash, was peeling, hot to the touch, hard, and inflamed. I was released from the hospital after a week and sent home with IV antibiotics which was to be administered to me for another week with a home health service. After a week of the home IV antibiotic, I was to take another week of oral antibiotic, Doxycycline.
I continued for another five months with weekly transfusions of both platelets and red cells until my menstrual cycle got the fine idea of trying to allow my body to drain it's blood supply via my uterus. So, I ended up in ER and was admitted to the hospital again where I stayed a few days to get my menstrual cycle under control and my body tanked up with more blood so I would resemble a live person. This time, I was sent home with birth control pills, Demulin, to control my female cycle. I was not to take the placebos so that I wouldn't have a cycle at all. Well, things didn't work out as planned. I started my menstrual cycle again anyway, but this time it was even heavier than before and lasted for about a month! Of course my transfusion rate increased at this time because the blood was being pumped into my veins while at the same time just dropping out through my period. (I guess my exit door had been left wide open.) After going through this nonsense for about a month, I had a transfusion on a Friday, and by Monday, I had to be taken to the hospital by ambulance. My hemoglobin level had dropped down to 3.7. (I know others have been able to walk into the hospital with this level, but I guess with all this fast yo-yoing of blood in-blood out business, I could not get up without starting to black out. I just wanted to be left alone to die by then, but my family wouldn't have it.) At this point, I didn't care anymore. I was so tired. I accepted to have an endometrial ablation done to stop the bleeding and had more transfusions, but that was all. The endometrial ablation was done, I got tanked up again with blood, and I was sent home again to continue my exciting life of regular visits to the doctor for CBC's and visits to the Procedure Center for transfusions.
Eleven months later on July 6, 2001, after using 89 units of platelets and 86 units of red cells, I received my last transfusion. (Although I didn't know it at the time.) After a total of 19 months, my hemoglobin started to hover in the 7's, and my platelets remained above 10K. I was very functional and asymptomatic at this level, so my poor little veins finally got the long needed rest it deserved. Finally! Progress!
She continues with CBC (blood counts) and the ups and downs she went through. However, as of now, she hasn't had a transfusion in over 8 years. She is, in my humble opinion, a brave and remarkable woman.
Some of you have requested My Story. It's coming.
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