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
Tuesday, August 31, 2010
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.....
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