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I Choose to DanceThe art of living is more like wrestling than dancing. 08 diciembre t minus 8 daysWell here we are kids, close enough to begin counting down, its been a long strange journey indeed.
As of a couple of months ago I am clear, but we all know thats just smoke and mirrors at this point. Now begins the long count down to the 6 month mark and beyond.
I keep getting the "you look great" line from everyone. The truth is all I see is finally reaching an age when I am comfortable in my skin just to discover my skin is having a schizophrenic episode and I could not recognize me without 3 forms of id.
I look and feel 10 yrs older than I did on January 10th, the beginning of this slippery slope of twist and tumble to get me to this day, just shy of a year later.
The "holiday's" are upon us and I will be opting out this year, 10 days is not enough time to come up out of the fog and into the cheery ho ho ho spirit. I fell much more like the ghost of christmas past, uuuprfph, ooh, perhaps it is just a bad piece of meat.
I am covered in bruises and scabs. I can see all the roots of my teeth. There is no inch of me that is not cracked and itchy, its a beautiful sight I tell you.
Somehow in the midst of it all, while out shopping with my daughter 2 weekends ago, I actually got "hit on", good God I swear the freaks abound. An old, hmm, suppose I could say boyfriend, but actually 4 yr obsession, oh well, anyway, made a comment that I possess, oh how did he say "inherent sexuality", I could have peed my pants laughing. I may sound sexy on the phone, but the only thing feeling sexy on me at the moment is, well, precisely, nothing.
I have decided that I will need to spend the entire first quarter of the year cleaning house. I am just sure there are "things" growing in every corner of my home. Laundry alone aught to carry me through to March and perhaps for my 41st birthday I will move on to dust bunnies, actually they are more like dust badgers, even the cats won't go under the bed anymore.
And I can barely make it out of it......... 05 noviembre msn spaces is a piece of junkJust discovered that my space looks nothing like I set it up to. A wet dream kids, msn could surely screw up a wet dream. a little catching upOK kids I know it's been a while, too many events and emotions to cover them all.
Have gone back to work in the office, about 3 weeks now. Could not have imagined how difficult that would be while still on chemo. Getting through the days one at a time though and only have 6 weeks left.
Made a few gains in weight, just to lose it all. Not sure if its the stress of being back in the office, now that its a daycare center, or the disruption in my routine. Regardless, down to 97 now. Safety pins and sticky tape are my new fashion accessories.
All of this prompted a call to the doc to actually get my labs for the first time since week 12, and guess what, I have cleared. Much mixed emotion about that.
One not sure when I cleared so not real sure how long I should continue treatment, not at all confident that I could bear another few months if recommended by the doc. I am beyond ready to re-enter the human race and reestablish my goddess status.
Also as some of you well know "clearing" is a bit of a myth and a slippery slope at best. Now comes the long wait to see if I stay cleared after treatment.
I read an interesting article today that strongly recommends staying on daily, low, doses of interferon for up to 6 months after the initial 48 months and or a full 72 months of treatment as being the best shot at staying cleared. Grrrrr 72 months. Frankly I think I could take 72 months of pegasys but the ribivirin has to go.
Well for the moment I need to stay really attached to my, one day at a time, plan. Keep your prayers with me and mine are with all of you.
26 septiembre woo %##!! wooGreat, another worthless celebrity on the band wagon, no pun really folks, wearing it like a badge, doing absolutely nothing for advocacy of our cause for the 10's of thousands here and the millions worldwide that die because they can't affort this lovely 11 months of hellish adventure. Put a sock in it you big lipped putz, it gives me some twisted comfort though that he looks as bad as me!!!!!
Steven Tyler Reveals He Has Hepatitis C The Associated Press Steven Tyler says he was diagnosed with hepatitis C three years ago after having the illness for a long time without any symptoms. In an interview that was to air Tuesday on "Access Hollywood," the 58-year-old Aerosmith frontman said the infection was now "nonexistent" in his bloodstream after 11 months of treatment, including the drug interferon. "I've been pretty quiet about this," Tyler was quoted as saying. "I've had hepatitis C for a long time, asymptomatic. And I talked to my doctor ... and he said now is the time and it's 11 months of chemotherapy. So I went on that and it about killed me." 14 septiembre the long and longer of itok kids, guess what, here in week, hell I don't know 35 maybe 36, I get to go back into the office to work. I won't bore you with the details but communication issues abound. Me in my pragmatic nature have determined that at the crux of the problem is that since I left the office 3 yrs ago this month we have hired 156 people that have never met me.
How the hell I am going to pull this off at this stage in the chemo adventure I have no clue, but let the bastards watch me bleed for the next 12 weeks and with any luck that will shut them up.
I frankly just decided I cannot tolerate this drama in my job and if I have to sacrafice a bit of my health to get my working environment back on track, so be it. God knows my life is enough of a drama, ya know.
In the mean time, I believe its time to start scoping out the market........ 21 agosto another mondayI do my injections on Monday, what the heck am I thinking you ask. I am blessed enough to work from home, so I decided that if I did my injections on Mondays I would feel best by the weekends. It's all great in theory but at this stage in the game I don't feel fabulous at any time. There are some days that start out very hopeful and I think I am going to do pretty well so I gear up for some adventures. It generally starts with a trip to the bank or the grocery store, at which point I quickly learn that the most adventure I have energy for is a walk to the mailbox and I have overextended myself the moment I put the keys in the car. Went to Walmart last weekend, I know, what the hell was I thinking, but I do need to eat. I was there a bit over an hour and made 11 trips to the bathroom. After the first couple I began to alternate between the front/back bathrooms, so as not to draw undue attention. The first question one must ask oneself is what on earth I could have fathomed that I thought I could tackle a place big enough to have a front/rear bathroom. Those who know be best though will tell you I am creature of bold moves. I felt though, far less than bold and the end of my journey, face sweating, feet numb, guts wretching, head pounding, trying to maneuver my way home, half blind and all stupid. Needless to say that was the end of my adventures for the day, I have warn a permanent butt print in the sofa and at 108 lbs I can tell you it took some commitment. I don't know what week I am on anymore and have not the energy to surf through my blog to count out from my last log of the date. I have become pretty focused on the date Dec 15th. Its much too far out to begin counting days, but as its well past the 1/2 mark it seems an attainable goal. All and all the time has actually gone by much faster than I contemplated. At the moment though, as fall is coming on fast and furious, I anticipate these last few months to be of great challenge. One day at a time Sherrill, one day at a time....... 17 agosto movie pic for the dayMy movie pic for the day, not sure what year it came out but hopefully you can find on dvd, held my breath the entire movie
 01 agosto msn spaces blew a big one againWell kids they have done it again, this is a piece of junk, unattractive, user nightmare, I am telling you they could mess up a wet dream..
oh and it takes the better part of 8 mins to load, oh joy
with me on chemo I can assure you I have not patience for this and you may not be hearing from me much here anymore. 27 julio the boo hooers and the cluelessOk, the title is a bit harsh but fits none the less. Heppers fall in 3 catagories:
THE BOO HOOERS: The name speaks for itself, though I have been known to refer to them as the walking dead. It does not matter if they were diagnosed yesterday or 20 yrs ago, they are the doomsayers. Forever lamenting the tragedy of their situation. No doubt on a cornucopia of psyc meds, hate their doctors, damn the world for not being sympathetic enough, slip into regular depressive periods, believe they have a death sentence and live like they have one foot in the grave. You have to be very careful when you find forums or personal support groups filled with these types as they will suck the life out of you while bleeding the life out of themselves.
to the boo hooers: get a grip kids, if you choose to continue to wallow in your self pity you will never find out how to live with this disease instead of suffering with it.
THE CLUELESS: This is actually my least favorite group of all and I have a very difficult time having patience with this group. I am not talking about the uneducated but eager to learn group. I am referring to those that choose to not educate themselves about their disease and be their own advocates. They trust their doctors to tell them anything they "need to know". They never question what their told, they know nothing about how best care for their own bodies. They rarely seek out the experiences of other heppers and they tend to also be those that drift into the boo hooers.
to the clueless: get one real quick kids, this can be a looooong and scary journey when you don't have any idea of what the future holds for you.
the third catagory - THE DRAGON SLAYERS: We tend to be a bit waaaay left of center, occasionally a little over zealous. We read all the articles, seek out one another, all over the world, question everything the doctor says, get involved in advocacy and generally wear out our non heppers with "too much information". We are just as likely as not to bring a subject to the doctor that we know more about than they do. We often take all myriad of supplements that we have carefully researched. We aggressively seek out treatment even when the doc says we don't need it, don't need it, what the hell is that, your not dying you don't need treatment, wow what happened to preventative medicine. We tend to face all of this straight on, with our eyes open, armed to the teeth with a positive attitude and ready to take on anything.
to the dragon slayers: give yourself a break every now an again, the burnout factor can be high, exhale often, and try to be kind to the boo hooers and clueless, upon first encounter and then run like hell 10 julio week 26Well, kids here we are, injection 26, I think I have been neglecting this blog as it forces me to count down the weeks which I try not to do as there are just too many of them left.
My hair is a bit over 1 1/2 inch long and at a really horrible stage, too short to do anything with, too long to leave alone. I have tried every kind of gel, mousse, mud and cannot get it to lay down, if I try to spike it up I look like that little Ween characture, boognish or some silly thing like that its called.
I have gotten into an obsessive grocery shopping pattern of buying completely different things every time I go just in desparation of finding something I can taste. I spent a fair amount of time making pork green chili over the weekend to end up w/3 gallons of a food I cannot eat as it tastes horrible though my daughter assures me its the best batch I have made in some time, go figure. My gums have receeded so much I can see the roots of my teeth, if I have any teeth left at the end of this journey it will be a miracle. All of which will be a bloody shame as I have excellent teeth, had my last and only cavity at age 10, grrrrrr. We had 8 days of rain in a row which is playing havoc with my pneumonia doc says if my pulse-ox, I think its called, gets any lower they will send me home with a little oxygen tank for crashes and daily maintenance, oh joy.
22 vials of dragon juice in the fridge, 22 vials of dragon juice in the fridge, 22 vials of dragon juice in the fridge, take one down pass it around, 22 vials of dragon juice... 08 julio the bath tub follyI have cats, 2 of them, some posts back I explained the obtaining of the cats and my subsequent reservation about them. All and all though they are relatively entertaining and other than the occasional catscapades not too much trouble.
Add filled bathtub, me, bubbles, razor in one hand, left leg in the other. Dominic or DEMON as he is affectionately known, has a fascination with water so often sits and glammers at the bubbles while I am bathing. At the particular moment of impending folly the demon was behind me and I was occupied doing contortions trying to get at that little spot at the back of my ankle.
****SPLASH**** should have been my first warning, but alas, my chemo and vicodin hazed reaction time is a bit diminished. By the time I realize "splash" is the beginning of a painful and hilarious event, its too late.
Cat only wants to go one direction, out of the water, nearest platform is, you guessed it, my back. One futile clawing attempt up my back and "splash" back into the water he goes.
The blood dripping down my back has considerably excelled my reaction time and I "woosh" scoot across the bathtub floor seeking escape. Cat is too seeking escape but the bathtub is quite slippery with bubbles and oils. He looks much like a cartoon with feet going full speed and body going nowhere, shooting a water plume 2 ft up the shower wall.
I am not intervening, noo, indeed, let the little $#%@!! figure it out for himself or drown, I am laughing too hard to be of any assistance anyway. At last he figures out running in place is getting him nowhere and one monumental leap achieves escape.
I now hear, in the distance, wet, squishy, splat bounding around the house, perhaps I should just stay in the bathtub the rest of the evening.........
07 julio vx-950vx-950 has been around for awhile overseas, it is a protease inhibitor, ie. to stop the replication of the virus, as opposed to the viral inhibitor that ribavirin is. It claims to stop the replication of the virus in days. I have always said until the research goes in the same direction that HIV drugs did, we would never get a handle on this. As HIV and Hep C have very similar viral makeups (rna virus). I have been watching the progress of this for a couple of yrs.
www.hivandhepatitis.com/hep_c/...at.html
The difference between the protease inhibitor and a viral inhibitor is that the viral inhibitor kills the cell w/the virus, the protease inhibitor kills the viral molecule and not the cell, thus you don't get the nasty ribavirin side effects largely caused by the destruction of your cells. vx-950 will replace ribavirin in combo treatment w/interferon, and perhaps even mono treatment for very low viral loads or infections caught early enough. Is my understanding the first phase of the US trials will be for type 1's that have failed all other treatments, but could be wrong, its all been pretty hush, hush. I think anyone interested though should get in the data base and your odds of getting in will improve as the trials expand. 04 julio week 25Yesterday the doctors office called with my labs, I was a bit surprised that they were open yesterday. My alt's / ast's are perfect, always have been, thyroid, blood counts all good. They did not have my viral load in yet and I advised her I did not want to know.
This is the deal, if they're bad I still have 23 weeks to go, if they're good I still have 23 weeks to go. Get it, there just does not seem to be any productive point to knowing at this point. Thats my decision and I'm sticking to it.
On a side note, Microsoft/MSN has done it again, I am telling you they could f%#@!! up a wet dream, the bulk of the dates on my blog have converted to Dec 31st, which is interesting in and of itself as I did not start this blog until January. Perhaps after Bill Gates leaves someone will take the reins and get all the screwy to the flat out disfunctional Microsoft garbage fixed, so we can hope.. 03 julio 1:48 a.m.Due to a reduction is serotonin caused by both interferon and ribavirin I find myself wide awake at all hours of the night so here I am.
I neglected to make a posting at my 1/2 way mark, week 24 of 48. It seems odd and dishartening to tick them off by weeks or days as there are still so many of them left, thus I think I let week 24 pass right on by.
My last labs on Friday had a viral load included, I have been manipulating the lab dept to not run that test as the doc has agreed to let me go 48 weeks no matter what, I really just did not want to know if I am losing or winning this leg of the battle. But alas my brains just plain don't work very well these days and I neglected to advise the lab this time so likely sometime next week I will get the lab call, perhaps I will just not answer the phone until Dec 15th.
Last time at the doc my body fat percent was down to 7 which is frankly not all that healthy for women , over 10 is essential to health, 12 to 17 is preferred. I am really not concerned about the body fat but now that almost all the fat is gone the drugs are eating the muscle. I can barely open a ketchup bottle and going up the stairs or getting out of the shower is an excercise of a precarious nature.
26 junio chemotherapy - interferon???Chemotherapy DrugsInterferon Alfa-2b (PEG conjugate) (o)PEG Interferon (PEG in-tur-FYUR-on) Trade name: PEG-INTRONTM Drug type: PEG Interferon alfa-2b is a "biologic response modifier." This medication is classified as a "cytokine." (For more detail, see "How this drug works" section below).
http://www.chemocare.com/bio/interferon_alfab.asp
What many don't understand is that interferon "is" a class of drugs called chemotherapy. Any drug that is designed to interfere with cell division or reproduction falls in a class of drugs labeled chemotherapy. Many of us on Hep C treatment don't get the understanding from those around us that we are on chemotherapy, yes, the dreaded treatment that so many fear. The dosing for this drug is very low in comparison to the types of chemo given to cancer patients, but I assure you all the side effects while a milder form are all the same as any person under cancer treatment. Interferon by the way is one of only 3 classes of chemo that are administered outside of a hospital environment and self administered.
24 junio prose for the day
Not your dark poisons again, White sleep! This fantastically strange garden Of trees in deepening twilight Fills up with serpents, nightmoths, Spiders, bats. Approaching stranger! Your abandoned shadow In the red of evening Is a dark pirate ship Of the salty oceans of confusion. White birds from the outskirts of the night Flutter out over the shuddering cities Of steel.
georg trakl 21 junio prose for the day
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http://poetry.tetto.org/read/30854/ 19 junio flame wars???http://www.wired.com/news/technology/0,70179-0.html?tw=wn_index_2 excerpt from the article: According to recent research published in the Journal of Personality and Social Psychology, I've only a 50-50 chance of ascertaining the tone of any e-mail message. The study also shows that people think they've correctly interpreted the tone of e-mails they receive 90 percent of the time. "That's how flame wars get started," says psychologist Nicholas Epley of the University of Chicago, who conducted the research with Justin Kruger of New York University. "People in our study were convinced they've accurately understood the tone of an e-mail message when in fact their odds are no better than chance," says Epley.
This is an interesting article and very relevent to a past time period in my life as I once had a nearly 5 yr relationship that was deeply coagulated by an endless flow of misunderstood e-mails and IM's. Since that time period I have become very gun shy about any substantive conversation with anyone via e-mail or IM, you should beware too. week 23Injection 23 down, I finally figured out how to inject in my backside fat which is one of the only places left on me with fat that I can use and I have been told to avoid the inside and back of the thigh, something about blood vessels.
My weight has stablized, no gain but no more loss. The level of muscle degeneration though concerns me greatly. By the time I am done with this I will be nearly 42 and can only hope I have the motivation to put back together the physique I had, its was my last good asset damn it..
I gave up my tanning membership today, can't afford it and can no longer tolerate the uv's at all. I was up until 3:30 this morning with a maddening itch in my feet which were exposed to the sun this weekend and became covered with hives.
I need to find a way to get off this new antibiotic the doc gave me for the Perioral Dermatitis as it makes me sick. I mean sick to my stomach, which I have no tolerance for. I don't mind the general nausea that accompanies the pegasys but this med gives me a full on stomach ache. I can take any other kind of sick, most days, but I have a notorious cast iron stomach and little tummy aches turn me into a full on sissy and with all the other aches I have tips me right over the edge.
I think I have the face condition narrowed down to Sodium Lauryl Sulphate and the sun/wind. So I am going to try and drop the meds and see if just avoiding those keeps the condition at bay. Sodium lauryl sulphate is in toothpaste, mouthwashes, many lotions and cosmetics, retin A and almost all soaps.
My hair has grown in about an inch maybe an inch 1/2, looks very strange. The color still undoes me, somewhere in between champaign and honey. Hair grows much stranger than I ever thought, I wish I could get a good picture of it but the lighting is all wrong to show all the directions it grows in. The hair on the top actually grows in a crosshatch pattern, with each hair growing left, right, forward, backward or straight up. I have a perfect circle at the dead center crown and all the rest is very one directional. Geez no wonder I used to spend so much time getting to go in any direction.
18 junio today its....I woke today, dawn broke, dreams faded, I opened my eyes. So what, you say, I do this every day, don't I. I think not, I get up every day and wander through the day, the mechanics of a day, largely with my eyes closed. Its regurgitation of wrote movement and function, its a method that has worked well for me in times of crisis. Just keep putting one foot in front of the other and each day will turn into another and eventually things will be different than they are.
I am told and mostly feel that I should be grateful for the day, the dawn. I have much to be grateful for and humble for, really I do.
I tell myself that I don't live in denial, that I am fully in recognition of my circumstances. That the events and current condition of my life are not a mystery, that cause and effect, choice and concequence can be fully mapped and recorded.
I have few regrets as regret is understood but I am often perplexed, by how a seemingly well thought out choice, can result in a completely unintended result and at this juncture my entire life seems to be steeped in conclusions of unintended results.
I have a beautiful home, a dream job, the financial means to care for myself and my family, almost, a car that runs really well, a beautiful healthy child, yes, damn it I have many blessings. To be fair though, if I am the sum of my parts, I am also sick, bald, confused and lonely and am having a very difficult time integrating all of these parts together.
I remember I used to be really adept at compartmentalizing all the aspects of my life and personality. I also though used to have venues for all of those aspects. At the moment I am extremely limited in my abilility branch out into those venues. So here I am, trapped in my house and inside my head and its dark and quiet in here.
Oozing out of the quiet is an endless haunting whisper of, what if, maybe, perhaps, should be, counld have been. It all has a rancid, tinny, far away sound, yet deafening, as the usual cast of charactures that lives in my head seem to be on haitus.
I have no conclusions to this seemingly self serving diatribe, but I am awake now and aware and the nothing seems much too close for comfort so I thought if I perhaps commited it to writing I could squeeze it out of the darkness into the light.
its almost working......
17 junio another personality testthis one was pretty interesting and picked up some key personality traits the many that know me would never have guessed are the core of my motivations:
you have to click trough it my e-mail is sjohnson929@msn.com, don't need a password just type in the e-mail and go to "next", it's too long to post on here... 16 junio coffee may ward off liver damageJune 13, 2006 COFFEE WARDS OFF LIVER DAMAGE Drinking coffee may help protect against developing the liver disease cirrhosis, researchers from Kaiser Permanente find. The study, published in the Archives of Internal Medicine, examined data on more than 125,000 people who filled out questionnaires about their lifestyle, including their drinking habits. Nearly 200 people went on to develop cirrhosis, but for every cup of coffee people drank per day, they were 22 percent less likely to develop the disease. Since there was no relationship between tea-drinking and cirrhosis, researchers believe it's not the caffeine that confers the benefit.
http://abcnews.go.com/Health/story?id=2070262
hmmm and just when I thought it was time to give it up.... 12 junio prayer for the dayweek 22 and nothing new to add but this little prayer:
Dear Lord, I thank You for this day. I thank You for my being able to see and to hear this morning. I'm blessed because You are a forgiving God and an understanding God. You have done so much for me and You keep on blessing me. Forgive me this day for everything I have done, said or thought that was not pleasing to you. I ask now for Your forgiveness. Please keep me safe from all danger and harm. Help me to start this day with a new attitude and plenty of gratitude. Let me make the best of each and every day to clear my mind so that I can hear from You. Please broaden my mind that I can accept all things. Let me not whine and whimper over things I have no control over. And It's the best response when I'm pushed beyond my limits. I know that when I can't pray, You listen to my heart. Continue to use me to do Your will. Continue to bless me that I may be a blessing to others. Keep me strong that I may help the weak... Keep me uplifted that I may have words of encouragement for others. I pray for those that are lost and can't find their way. I pray for those that are misjudged and misunderstood. I pray for those who don't know You intimately. I pray for those that will delete this without sharing it with others. I pray for those that don't believe. But I thank you that I believe. I believe that God changes people and God changes things. I pray for all my sisters and brothers. For each and every family member in their households. I pray for peace, love and joy in their homes that they are out of debt and all their ! needs are met. I pray that every eye that reads this knows there is no problem, circumstance, or situation greater than God. Every battle is in Your hands for You to fight. I pray that these words be received into the hearts of every eye that sees it. 05 junio week 21
I personally had never heard of this particular disorder and if you have any interest http://www.emedicine.com/derm/topic321.htm. It's quite a lovely condition with a myriad of suspected causes, thus I have had to purge nearly my entire cosmetic collection of everything that contains:
So the general gist is by the time I am done with this I will be a dried up old ghostly hag. My eye brows have grown completely back in, such as they are, all curly and pointing in 6 directions, it quite nicely adds to the troll effect. So I decided to go ahead and try and grow the hair back in, perhaps get 4 or 5 inches before winter. When I first cut it the little 1/8 inch left was blond as could be, upon my second cutting the new growth is very dark, much closer to the color I suspected. I haven't found any greys or whites yet, the pubic hairs are making up for that. Will just have to see how this progresses as time goes on, anyone want to take bets on how long a hair has to get before it lays down?? Received my first real live rent check from my daughter today, woooo, hoooo, in the nick of time to I tell you, its amazing how much an 18 yr old can eat. Yes I did feed her for the first 18 so it should not have come as a suprise, but my budget has been severely dented by the cost of meds and all the subsequent survival products. My % of meds - $183 monthly pedialyte - approx 4.83 per bottle - 1 bottle daily extra vitimins and supplements recommended by docs: approx $160 monthly 4 lab visits a month - $30 a pop gallons of lotions: the good ones are about 8.30 a bottle Won't even throw in the nearly $400 I spent on products I now get to throw away that I bought to try and combat this face infection waiting the 3 months to get into the dermatologist. So thats what about $460 a month, no wonder people opt out of the treatment, even if you have good insurance, few budgets can squeeze in an extra $460 a month and I should be bordering on bankruptcy by the end of this, oh well, God's on my side and He will provide. Summer is officially here but between the face condition and the general hives the sun causes, I am nearly banished. I have devised a wonderful method of 10 minute intervals over the course of the day, gives me just enough color to not look like a ghost, keeping face covered at all times. I should look very interesting by the end of summer, tan toosh and pasty white cheeks, of course no one cares what my toosh is doing these days anyway. Well, that's as much update as I have today.....
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