Monday, October 10, 2005
October 2005 posts from livejournal
.
.
Wild Card
Posted on 2005.10.03 at 10:50
Current Mood: scattered
Current Music: Asylum Street Spankers
OK - the Boston Red Sox have the Wild Card spot and will start their series with the Chicago White Sox (does this mean a Pink Sox series?) on Tuesday. Baseball is keeping me passionate. Picture me (if you will) watching a few key innings - a lone Boston fan, hands in finger-crossed prayer and then jumping with glee in front of a flatscreen display model at the local Circuit City while DB and her 78 year old mother shopped for a computer moniter and Pk watched a movie in the surround-sound chair. Oh, dear. What a sight!
So - speaking of wild cards (for cancer is CERTAINLY that!) I am definately doing better than last week. Thank you so much for those of you who called and wrote. Sure do appreciate that.
I guess I had some kind of infection that kind of took over. My doctor was PISSED that no one brought me to the hospital and that I am such a stubborn patient. He dragged me and DB into the office and gave us a lecture. If I EVER get that bad again - I am to be brought to the hospital immediately, be tested for this that and the other thing - put on antibiotics, blah blah blah.
It's true - I am a terrible reporter. Someone asks if I'm OK - do I need anything? And I'm all like no thanks - I'm OK - just put another blanket on me (even though it's 85 degrees in here and I've already got three blankets and a heating pad on me...) My thinking - especially when I get in that horrible sick place - is that it could be worse. It HAS been worse. I can ride it out....So we have a plan of action now. No one is allowed to listen to me. Just take my temperature and watch me. If I shake or if my teeth chatter, I get dragged kicking and screaming to the car. (Not that I would kick and scream - but I sure wouldn't initiate a trip to the hospital - y'all know how much I HATE them...)
So now all I'm dealing with is a tongue full of lesions (pretty freaking painful) and a strange new cough and the ever-present search for this month's supply of IVIG. I'm losing a little weight again because I can't eat that much - it's back to soft breads, puddings, oatmeal and nutrition shakes. But luckily I gained enough weight with DB's fabulous cooking over the last few months to cover a loss.
DB and I are perfecting the art of sexy kissing without tongues. Her imagination and ability to handle all of this blows. my. mind.
This was a very nice weekend for our family. DB and Pk and Db's mother and I spent some good quality time together. It felt good. We are managing to find a balance of pace so that Pk gets to play out his full tilt boogie energy and I don't push myself and DB gets to include her mother. Scottish Highland Games, Church, Fish and Chips on Capitola beach. It was a beautiful mix of fiddles and politics and history and sunshine. And when the 8 and 78 year olds were asleep we always managed to find time for "Home Therapy."
The snail slow pace of house hunting continues. We may or may not move in together this year. Pk needs to stay in the same school and would like to be close to his friends for play dates. DB needs to work in SF. I need to be close enough to hospital, chemo, grocery stores, etc. and we all want to be together and have a puppy. How to find something near enough for each of our needs, in our price range, not too funky? We got excited by a mountain cottage but they said no because of the dog (I personally think it was when they found out we were dykes) and we looked at a cute 700 sq. foot cabin/trailer but had to say no because it didn't quite make it for all of us. Something will happen when the time is right.
In the meantime - I am keeping busy with a new quilt commission (thank you, Jeajea!!!) I am sooooo excited to be working on this piece. The original pieces were made between 1971 and 1974 and I will make them into a quilt. VERY cool.
Hey - DB and I got new pictures of us from the Folsom Street Fair up on Friendster (thanks to the photographer Mark Chester) if you want to see (my name is "JustV" there). Check them out!
Oh! and would you get in touch with DB if you want to be invited to my 40th birthday party? We're going to try to make it a fundraiser for the gals in New Orleans who need so much help right now. It'll most likely be in San Francisco. Let everyone in the Bay area who knows me know that it's happening, OK? My bday is 11/11 but the party will probably be 11/12 or 13. More details as they become clearer.
Link Leave a comment
Edit Tags Add to Memories
How do you do it?
Posted on 2005.10.05 at 08:58
Current Mood: compassionate
Current Music: Day by Day, Godspell
Different people ask me this in different ways all the time. And I do not know the answer.
Yesterday DB and I were explaining Rosh Hashanna and Yom Kippur to Pk and he really didn't get the fasting part. I said things like: "If you fast, you get hungry and then each time your tummy grumbles, maybe you think about how good it will be to eat. Or maybe you'll think about where food comes from and be grateful for it. Or maybe you'll think of all the people who feel hunger like this every day and have more compassion."
This morning I awoke hungry (again) and knew that I had a shake to look forward to. I almost started to whine in my head - why me? My eyes are in SO much pain (mornings are the worst when the lenses have been out all night and the eyeballs are stuck to the lids and it's dry and scratchy). My lungs (worst in the morning as well) are tight and it's hard to breathe deeply. I have a not too bad cough that comes and goes. My mouth is throbbing and bleeding and there is no IVIG to be easily found in my area and why why why.
And it occurred to me that although fasting is not part of my spiritual practice - why not make it be? Why not take all of the pain that I am in and make it part of understanding the world better. More compassion. I mean I've been doing that but this seems taking it to a deeper level. I'm not sure why.
I am determined to use pain medications as minimally as possible. So far, I have pretty much avoided them altogether since the summer of 04. I take advil sometimes and I use lidocaine to numb my mouth. But no pain killers. That determination keeps me going.
And I have to say that my life is so rich and full - with DB and Pk and the new quilt and planning my birthday party and just getting by - I don't WANT to spend precious time complaining. It IS alot to deal with. It doesn't seem fair sometimes. But what are my options?
Being active is one, I suppose. On a seperate journal entry I will ask you to take a few minutes and make your voice heard. Maybe the more of us there are, the better the chances there are of changing the IVIG situation.
Link Leave a comment
Edit Tags Add to Memories
You can help me get the IVIG I need
Posted private on 2005.10.05 at 09:46
Current Mood: determined
Current Music: We Shall Overcome
So I need your help - as do all people trying to get IVIG these days. To better understand the situation, let me say that Medicare is the federally subsidized health insurance for senior citezens and the disabled which is manditory to have. It's not free and if I opt out of it, it's unlikely that I will ever be eligible for it in the future. And even though I have private health insurance (thank you, Daddy!) doctors MUST use Medicare as my primary insurance and go by their federal rules.
Medicare recently made it impossible to receive IVIG (intravenous immuniglobulin - a pooled blood product as close to white blood as the body can handle) in a doctor's office. It can only be received in the hospital (SOOOOOO stupid since hospitals are so much more expensive!!) but the hospitals have tiny allotments for their IVIG patients. My treatment is 180 grams over three days every three weeks, for example, and the hospital only gets 200 grams total for the month to try to treat everyone. Obviously the situation is out of control.
So - if you would kindly take a few minutes go to
http://capwiz.com/immune/home/'
and click on the button that says: Ensure Access to IVIG For Medicare Patients Click Here.
I would be so grateful. There is a pre-written letter so all you need to do is put your name and address and send it. If you want to put in a personal message in the space provided, you can write your own or cut and paste this:
I have a friend who has paraneoplastic pemphigus (PNP) - a disease fatal in over 90% of known cases. She also has cancer - lymphoma - which is the underlying reason for the PNP. PNP is an auto-immune allergic reaction to cancer and it causes her T and B cells to eat the proteins that hold together her skin cells. Her skin literally falls apart on a cellular level. The only thing that has staved off this process is IVIG.
My friend began IVIG treatment at her oncologist's office in the early spring of 2003 when 60% of her body was burnt from the PNP and the process of her becoming blind (as the skin and glands were eaten away in the eyes) was well under way. IVIG saved her life and she has been receiving it since with good results. Although the damage to her eyes is irreversible, she has found lens devices to cover her cornea and at least her skin is intact.
Well - it WAS intact. Until IVIG became unavailable under the new Medicare situation this summer. Her doctor can no longer treat her in his office (even though she also has private insurance) and the local hospitals have such a small allotment that they cannot take on new patients, even ones with life threatening diseases such as hers.
She is not able to eat normal food currently and has no idea how much skin will lesion. She MUST be able to receive IVIG. This situation is NOT acceptable.
1 comment Leave a comment
Edit Tags Add to Memories
Birthday Plans!
Posted on 2005.10.10 at 10:01
Current Mood: inspired
Current Music: The Wonder of You, Elvis
I'm very excited - DB and I finished making plans for my birthday party! It is going to be at her house in SF on November 12th from 7-11.
It's going to be a Blackjack / Poker night where all are invited to wear 1920s and 1930s costumes. We'll play jazz and have nice food and some prizes too! All the proceeds of the evening will go to the special fund for the women from New Orleans (set up by Puma from Festival.) The invitation has me on the cover of the Saturday Evening Post with all the deets on the back. We'll try to send them out to all the email addys we have plus in snail mail if we have it. We are encouraging folks to help us raise lots of money for the women we know. Obviously, many have given, many have no money to give and we realize that natural disasters and those in need are larger than the resources we have - but we'll ask everyone to consider putting the New Orleans women on the consideration list.
And in other news - our fingers are crossed and we are praying for the best possible outcome for a mountain cottage that we have fallen in love with. It's teeny tiny (700 square feet) but in an incredible situation and we can afford it. It's a mile and a half from where Pk and I live now (yes, DB will commute to SF but only 3 days a week. The other days she can telecommute.) It's in an intentional community with artists and children and gardeners (13 people total - including us). It's on ten acres of green mountain land, has a pool and a hot tub and outdoor showers. There is an established bonfire circle for rituals and redwood groves, a year-round creek, huge, fabulous flower and vegetable gardens. There is an amazing communal art studio (a round structure with a 15 foot dragon sculpted into the building), an outdoor kitchen - all tiled and beautiful with a huge outdoor brick oven covered in a copper sculpture of a dragon with the flames of the oven coming from it's nostrils! The cottage has a gorgeous view of vinyards and mountains, is under the redwoods but has plenty of sun through the shade, has a woodstove, a loft for Pk, a trampoline built into the front yard and a place for both DB's office and my quilt studio if we scale back our stuff AND a treehouse for Pk. They love dogs, don't watch tv, don't do drugs, have magical dragons and hearts everywhere AND are clothing optional. I cannot imagine in my wildest dreams anything more inspiring. They have others who want to live there (as you can imagine) so we just wait now.
pain
Posted on 2005.10.18 at 12:14
Current Mood: in pain
Current Music: head banging industrial
yee-ikes
it's anothr one of those fever, chills, vice grip head pain - so much pain that it makes me nauseous -days. flat out. cant get up - typing from bed. it's better now than a few hours ago - had to ask someone else to take pk to school. Brk is here now and I am having tea.
I think having ivig (yes- we found it but had to get it from two different distributers & the second kind was really rough on me) AND chemo in the same week was too much.
painpainpain
And I am being stubborn (no, not me!) about pain meds. Just refusing them because yes they will help the pain but at a cost to my well-being. they mess up my digestive system and wreak havoc and it just isn't worth it in the long run. so I ride out these crazy days in whattever ways I can.
we're giving up on looking for housing for a while- the magical dragon heart place wanted a single commuter as it turned out. very disappointing. and it's too much to do with being a good mother, planning the party and being sick. so we'll wait.
so grateful for Brk and DB - great to have them as a family. We make meals and watch family movies on Sunday nights. Brk bakes with him and DB and Pk carved pumpkins to great success. Pk has lots of love and time for play and homework and being outdoors. Last night Pk and I snuggled in the big outdoor chair and watched the almost full moon with rows of whispy clouds surrounding it. very rich.
k - just wanted to check in
thanks to those of you participating in my birthday - I appreciate it.
V
Not Right
Posted on 2005.10.24 at 13:12
Current Mood: useful
Current Music: Nobody Knows The Trouble I Seen
Oh yeah, Baby. it's a roller coaster ride. Sometimes I am up, sometimes I am down. Last week brought gripping headaches and fever and chills (again.) I broke down and took a pain med but it made me sick so I continue to avoid that. I also avoid the hospital. Sometimes that means taking my temp and saying "OK If it doesn't go down in 20 minutes, we'll go." and then praying like hell that it goes down! I HATE hospitals but I've been warned that if I get a blood infection, it'll kill me in 24 hours if untreated. Geez. They really know how to intimidate a gal!
I only have a moderate headache at the moment & even that would improve if I would get off my butt and take a handful of advil. No complaints. And, wiith the exception of a persistant but non-threatening cough - I am doing A-OK.
DB, Pk and I had a lovely time at L & L's party in Berkeley for the Portland gals. Wonderful to see so many workers. Laughed a lot. Talked a lot. And Pk was thrilled with both the fog machine and the whipped cream.
I got my first bill from the IVIG treatment that I got in the hospital last spring (before the allotments got too small to accommodate me there.) The drug alone - the IVIG - was $26,897 a DAY. For three days every three weeks. That's not even including the nursing care, the needles, the saline, the hepron, on and on and on. I wonder what it will cost at home?
DB - bless her soul - said (with earnest moral conviction) "That is not right."
Unbelievable. And yet true. That is three TIMES as much as the doctor's office (where the Federal government won't let me get treated) charges.
---------------
And, now, for a political ad:
If you live in CA, by the way, please vote no on Prop 78 and yes on 79.
-------
If any of you know H MacAllister from her fabulous queerfatrevue activism and are NOT hooked in to how you can help, let me know. I feel good about finally having a use for walking in that lonely place of only known survivor. It's been over 3 years since my first symptoms of PNP - in Dec. it'll be 3 years since the cancer diagnosis. No other known survivors over 2 years. I can safely say that I have some experience to share with her. And that I can be of use.
THAT is totally cool.
OK - I am off to vaccuum and quilt. And then to pick up Pk - who (surprisingly) has chosen to be the grim reaper for Halloween. Hmmm.
Love, V
PS OOoooo - I forgot to say that I am mighty excited about the party - people are figuring out costumes - flappers, gangsters, 1930s Hollywood / Greta Garbo, Okies from the dust bowl, dandy chaps who play polo...fun fun!
CA Voters
Posted private on 2005.10.24 at 13:44
Current Mood: patriotic
Current Music: America the Beautiful
CA Green Party sez:
NO Proposition 73 - Waiting Period and Parental Notification Before Termination of
Minor's Pregnancy.
This proposition places a notification requirement on doctors before an abortion procedure may be performed on a minor. Unless the minor applies for a waiver from a judge within the doctor's jurisdiction, the minor's parent or legal guardian must be notified before the procedure, and a 48-hour waiting period must be respected.
Greens advocate full access to safe and reliable reproductive information and services – including abortions. This should be true regardless of whether teens have been abused, are part of functional or dysfunctional families, or they live in rural or urban areas. This initiative is one more step in the process to limit women’s reproductive choices. All research shows that the availability of reproductive information and services lowers the incidence of teen pregnancies and abortions.
Proposition 74 - Public School Teachers. Waiting Period for Permanent Status.
This proposition would increase the probationary period for teachers from the current two years to five years. During probation, teachers can be dismissed without cause or reason.
School administrators have arbitrarily dismissed probationary teachers to intimidate new teachers from speaking up at meetings or engaging in union activity. This initiative appears to be designed to keep new teachers intimidated, inactive, and fearful of supporting their teacher’s union for a full five years. This would greatly weaken California’s teacher unions at a time when they (and all of public education) are under heavy fire from the Schwarzenegger administration.
Contrary to the inferences of Proposition 74’s advocates, permanent teachers do not have tenured status. They can be dismissed for a variety of reasons specified in the state education code. But permanent teachers have the right to due process; they cannot be dismissed without cause.
Proposition 75 - Public Employee Union Dues. Required Consent for
Political Contributions.
This initiative would, "Prohibit public employee labor organizations from using dues or fees for political contributions unless the employee provides prior consent each year on a specified written form" (from official summary).
The big businesses who funded Prop 75 want to weaken the labor movement on the political front, and they want to cut wages, pensions and other benefits for workers.
Currently, most unions offer an “opt-out” check box on their union form for those members who do not want their dues used for political purposes. This initiative would change this to an “opt-in” method that each member has to renew each year to support their union’s political activities.
In the interest of fairness, the equivalent for business would be to get the approval of stockholders for political donations that a publicly held corporation wants to make. But we’re not hearing this from the backers of Prop 75 even though businesses far outspend working people in political contributions.
NO Proposition 76 - State Spending and School Funding Limits.
This initiative cuts school funding by over $4 billion every year – $600 per student – leading to more overcrowded classrooms, teacher layoffs, and fewer textbooks and classroom materials. Specifically, it would tighten the cap on total state spending; end Prop 98’s protections for schools and colleges; and require automatic cuts across all social and civic services if tax revenues drop.
We think some things are too important to cut – things like education, health care, and fire protection. Schwarzenegger and other Prop 76 proponents want to impose required cuts to vital services while prohibiting cuts to special interests like the California Dried Plum Board and “pork barrel” road building projects.
Greens believe that fair taxation statutes will be needed to finance all state expenditures, and that legislators should be increasingly more responsible to the taxpayers for increasing Public Education spending in particular. Legislators should NOT be forced by Prop 76 to either reduce spending to match revenues, or to yield responsibility for needed spending reductions to the Governor.
???? Proposition 77 - Redistricting.
The Green Party could not come to agreement on a position. NO and NO POSITION were the predominant votes.
This initiative would create a constitutional amendment requiring a three-member panel of retired judges to draw congressional and state legislative districts, rather than the members of the current legislature. This would supposedly take the party politics out of redistricting. The redistricting would occur as soon as possible.
YES on 77 – Opposing this bill would put us in the same camp with Democrat and Republican incumbents who want to continue to run in their gerrymandered districts. This bill does nothing for Greens, and still makes it look like something is happening. No matter how they draw the districts, only the Republicrats can win due to the lock that corporate money and winner-take-all voting has put on elections.
NO POSITION on 77 – Other states have tried independent or bipartisan redistricting panels. These efforts did not result in a significant difference in which party gets elected in any given district. Passage of this proposition may bring some relief from the extremes of gerrymandering, but let's recognize that it will not be a significant improvement in democracy for Californians.
This is a distraction from real reform. The problem is single-member (one winner) districts using winner-take-all voting. There is no gerrymandering scheme that will accomplish fair and balanced representation of voters under such a system. The solution is multi-member districts using proportional representation voting. This provides majority rule and minority representation regardless of how boundaries are drawn.
NO Proposition 78 - Prescription Drug Discounts (business version).
YES Proposition 79 - Prescription Drug Discounts (consumer version).
Health Access California, and other labor and consumer groups, sponsored Prop 79, which would use the purchasing power of the State of California to negotiate prescription-drug discounts for millions of Californians that now pay retail prices for these medications. This measure is opposed by "Big Pharma," the prescription drug industry, which also sponsored a counter-measure, Prop 78.
The San Francisco Chronicle (July 13, 2005) ran a front-page story listing 12 drug companies which have contributed $43 million since June 16 for this battle. Pfizer, Merck, and GlaxoSmithKline each contributed $8.5 million to their industry's "California Initiative Fund."
The Alliance for a Better California (the coalition of nurses, teachers, state employees, etc.) also worked to put Prop 79 on the ballot. Much of the language came from a measure that passed the legislature last year but was vetoed by Governor Schwarzenegger.
The major difference between these Props is that Prop 79 is mandatory for the drug companies. Firms that don't provide medicines under this program for the same price they charge MediCal could be barred from selling to the State's MediCal program. Under Prop 78, drug company participation is voluntary.
????? Proposition 80 - Electric Service Providers. Regulation.
The Green Party could not come to agreement on a position.
This initiative stems from a bill passed in the CA legislature (AB 2006) in 2004 that would have required utilities and other power suppliers to plan rationally for the future by re-regulating energy in California. Governor Schwarzenegger vetoed it, preferring "competitively priced" electricity over regulated electricity, even if residential rates go up in the process. So, TURN (The Utility Reform Network) is taking the bill to the voters.
YES on 80 – Blackouts due to power shortages and market manipulation did not exist in California prior to deregulation (all previous blackouts resulted from transmission or distribution outages). This proposition re-establishes legal requirements that were abandoned during deregulation. “Integrated resource planning” prohibits large commercial customers from jumping back and forth between “direct access” (power from independent providers) and utility services, thus providing more certainty to utilities in their purchase planning. There are also requirements for “adequate reserves” to prevent blackouts due to power “shortages,” as well as restoring obligations on corporations supplying energy to California - PG&E, SCE and SDG&E - to serve California consumers rather than out-of-state energy suppliers.
Other favorable aspects of this initiative are the requirement for all retail electric sellers to increase renewable energy resource procurement by at least 1% each year, and moving up the date of the state's 20% renewable energy requirement from 2017 to 2010 (decreasing our dependence on expensive fossil fuels). Similarly, “first priority for energy efficiency” means efficiency programs will be pursued before new power plants are built.
NO and NO POSITION on 80 – It foolishly gives even more authority to the CPUC, an agency frequently criticized by consumer groups. It locks communities into long term energy contracts with private corporate energy providers. It does allow Community Choice Aggregation programs, but the language is not clear and comprehensive so it could seriously undermine a community’s ability to start a CCA.
.
.
.
.
Wild Card
Posted on 2005.10.03 at 10:50
Current Mood: scattered
Current Music: Asylum Street Spankers
OK - the Boston Red Sox have the Wild Card spot and will start their series with the Chicago White Sox (does this mean a Pink Sox series?) on Tuesday. Baseball is keeping me passionate. Picture me (if you will) watching a few key innings - a lone Boston fan, hands in finger-crossed prayer and then jumping with glee in front of a flatscreen display model at the local Circuit City while DB and her 78 year old mother shopped for a computer moniter and Pk watched a movie in the surround-sound chair. Oh, dear. What a sight!
So - speaking of wild cards (for cancer is CERTAINLY that!) I am definately doing better than last week. Thank you so much for those of you who called and wrote. Sure do appreciate that.
I guess I had some kind of infection that kind of took over. My doctor was PISSED that no one brought me to the hospital and that I am such a stubborn patient. He dragged me and DB into the office and gave us a lecture. If I EVER get that bad again - I am to be brought to the hospital immediately, be tested for this that and the other thing - put on antibiotics, blah blah blah.
It's true - I am a terrible reporter. Someone asks if I'm OK - do I need anything? And I'm all like no thanks - I'm OK - just put another blanket on me (even though it's 85 degrees in here and I've already got three blankets and a heating pad on me...) My thinking - especially when I get in that horrible sick place - is that it could be worse. It HAS been worse. I can ride it out....So we have a plan of action now. No one is allowed to listen to me. Just take my temperature and watch me. If I shake or if my teeth chatter, I get dragged kicking and screaming to the car. (Not that I would kick and scream - but I sure wouldn't initiate a trip to the hospital - y'all know how much I HATE them...)
So now all I'm dealing with is a tongue full of lesions (pretty freaking painful) and a strange new cough and the ever-present search for this month's supply of IVIG. I'm losing a little weight again because I can't eat that much - it's back to soft breads, puddings, oatmeal and nutrition shakes. But luckily I gained enough weight with DB's fabulous cooking over the last few months to cover a loss.
DB and I are perfecting the art of sexy kissing without tongues. Her imagination and ability to handle all of this blows. my. mind.
This was a very nice weekend for our family. DB and Pk and Db's mother and I spent some good quality time together. It felt good. We are managing to find a balance of pace so that Pk gets to play out his full tilt boogie energy and I don't push myself and DB gets to include her mother. Scottish Highland Games, Church, Fish and Chips on Capitola beach. It was a beautiful mix of fiddles and politics and history and sunshine. And when the 8 and 78 year olds were asleep we always managed to find time for "Home Therapy."
The snail slow pace of house hunting continues. We may or may not move in together this year. Pk needs to stay in the same school and would like to be close to his friends for play dates. DB needs to work in SF. I need to be close enough to hospital, chemo, grocery stores, etc. and we all want to be together and have a puppy. How to find something near enough for each of our needs, in our price range, not too funky? We got excited by a mountain cottage but they said no because of the dog (I personally think it was when they found out we were dykes) and we looked at a cute 700 sq. foot cabin/trailer but had to say no because it didn't quite make it for all of us. Something will happen when the time is right.
In the meantime - I am keeping busy with a new quilt commission (thank you, Jeajea!!!) I am sooooo excited to be working on this piece. The original pieces were made between 1971 and 1974 and I will make them into a quilt. VERY cool.
Hey - DB and I got new pictures of us from the Folsom Street Fair up on Friendster (thanks to the photographer Mark Chester) if you want to see (my name is "JustV" there). Check them out!
Oh! and would you get in touch with DB if you want to be invited to my 40th birthday party? We're going to try to make it a fundraiser for the gals in New Orleans who need so much help right now. It'll most likely be in San Francisco. Let everyone in the Bay area who knows me know that it's happening, OK? My bday is 11/11 but the party will probably be 11/12 or 13. More details as they become clearer.
Link Leave a comment
Edit Tags Add to Memories
How do you do it?
Posted on 2005.10.05 at 08:58
Current Mood: compassionate
Current Music: Day by Day, Godspell
Different people ask me this in different ways all the time. And I do not know the answer.
Yesterday DB and I were explaining Rosh Hashanna and Yom Kippur to Pk and he really didn't get the fasting part. I said things like: "If you fast, you get hungry and then each time your tummy grumbles, maybe you think about how good it will be to eat. Or maybe you'll think about where food comes from and be grateful for it. Or maybe you'll think of all the people who feel hunger like this every day and have more compassion."
This morning I awoke hungry (again) and knew that I had a shake to look forward to. I almost started to whine in my head - why me? My eyes are in SO much pain (mornings are the worst when the lenses have been out all night and the eyeballs are stuck to the lids and it's dry and scratchy). My lungs (worst in the morning as well) are tight and it's hard to breathe deeply. I have a not too bad cough that comes and goes. My mouth is throbbing and bleeding and there is no IVIG to be easily found in my area and why why why.
And it occurred to me that although fasting is not part of my spiritual practice - why not make it be? Why not take all of the pain that I am in and make it part of understanding the world better. More compassion. I mean I've been doing that but this seems taking it to a deeper level. I'm not sure why.
I am determined to use pain medications as minimally as possible. So far, I have pretty much avoided them altogether since the summer of 04. I take advil sometimes and I use lidocaine to numb my mouth. But no pain killers. That determination keeps me going.
And I have to say that my life is so rich and full - with DB and Pk and the new quilt and planning my birthday party and just getting by - I don't WANT to spend precious time complaining. It IS alot to deal with. It doesn't seem fair sometimes. But what are my options?
Being active is one, I suppose. On a seperate journal entry I will ask you to take a few minutes and make your voice heard. Maybe the more of us there are, the better the chances there are of changing the IVIG situation.
Link Leave a comment
Edit Tags Add to Memories
You can help me get the IVIG I need
Posted private on 2005.10.05 at 09:46
Current Mood: determined
Current Music: We Shall Overcome
So I need your help - as do all people trying to get IVIG these days. To better understand the situation, let me say that Medicare is the federally subsidized health insurance for senior citezens and the disabled which is manditory to have. It's not free and if I opt out of it, it's unlikely that I will ever be eligible for it in the future. And even though I have private health insurance (thank you, Daddy!) doctors MUST use Medicare as my primary insurance and go by their federal rules.
Medicare recently made it impossible to receive IVIG (intravenous immuniglobulin - a pooled blood product as close to white blood as the body can handle) in a doctor's office. It can only be received in the hospital (SOOOOOO stupid since hospitals are so much more expensive!!) but the hospitals have tiny allotments for their IVIG patients. My treatment is 180 grams over three days every three weeks, for example, and the hospital only gets 200 grams total for the month to try to treat everyone. Obviously the situation is out of control.
So - if you would kindly take a few minutes go to
http://capwiz.com/immune/home/'
and click on the button that says: Ensure Access to IVIG For Medicare Patients Click Here.
I would be so grateful. There is a pre-written letter so all you need to do is put your name and address and send it. If you want to put in a personal message in the space provided, you can write your own or cut and paste this:
I have a friend who has paraneoplastic pemphigus (PNP) - a disease fatal in over 90% of known cases. She also has cancer - lymphoma - which is the underlying reason for the PNP. PNP is an auto-immune allergic reaction to cancer and it causes her T and B cells to eat the proteins that hold together her skin cells. Her skin literally falls apart on a cellular level. The only thing that has staved off this process is IVIG.
My friend began IVIG treatment at her oncologist's office in the early spring of 2003 when 60% of her body was burnt from the PNP and the process of her becoming blind (as the skin and glands were eaten away in the eyes) was well under way. IVIG saved her life and she has been receiving it since with good results. Although the damage to her eyes is irreversible, she has found lens devices to cover her cornea and at least her skin is intact.
Well - it WAS intact. Until IVIG became unavailable under the new Medicare situation this summer. Her doctor can no longer treat her in his office (even though she also has private insurance) and the local hospitals have such a small allotment that they cannot take on new patients, even ones with life threatening diseases such as hers.
She is not able to eat normal food currently and has no idea how much skin will lesion. She MUST be able to receive IVIG. This situation is NOT acceptable.
1 comment Leave a comment
Edit Tags Add to Memories
Birthday Plans!
Posted on 2005.10.10 at 10:01
Current Mood: inspired
Current Music: The Wonder of You, Elvis
I'm very excited - DB and I finished making plans for my birthday party! It is going to be at her house in SF on November 12th from 7-11.
It's going to be a Blackjack / Poker night where all are invited to wear 1920s and 1930s costumes. We'll play jazz and have nice food and some prizes too! All the proceeds of the evening will go to the special fund for the women from New Orleans (set up by Puma from Festival.) The invitation has me on the cover of the Saturday Evening Post with all the deets on the back. We'll try to send them out to all the email addys we have plus in snail mail if we have it. We are encouraging folks to help us raise lots of money for the women we know. Obviously, many have given, many have no money to give and we realize that natural disasters and those in need are larger than the resources we have - but we'll ask everyone to consider putting the New Orleans women on the consideration list.
And in other news - our fingers are crossed and we are praying for the best possible outcome for a mountain cottage that we have fallen in love with. It's teeny tiny (700 square feet) but in an incredible situation and we can afford it. It's a mile and a half from where Pk and I live now (yes, DB will commute to SF but only 3 days a week. The other days she can telecommute.) It's in an intentional community with artists and children and gardeners (13 people total - including us). It's on ten acres of green mountain land, has a pool and a hot tub and outdoor showers. There is an established bonfire circle for rituals and redwood groves, a year-round creek, huge, fabulous flower and vegetable gardens. There is an amazing communal art studio (a round structure with a 15 foot dragon sculpted into the building), an outdoor kitchen - all tiled and beautiful with a huge outdoor brick oven covered in a copper sculpture of a dragon with the flames of the oven coming from it's nostrils! The cottage has a gorgeous view of vinyards and mountains, is under the redwoods but has plenty of sun through the shade, has a woodstove, a loft for Pk, a trampoline built into the front yard and a place for both DB's office and my quilt studio if we scale back our stuff AND a treehouse for Pk. They love dogs, don't watch tv, don't do drugs, have magical dragons and hearts everywhere AND are clothing optional. I cannot imagine in my wildest dreams anything more inspiring. They have others who want to live there (as you can imagine) so we just wait now.
pain
Posted on 2005.10.18 at 12:14
Current Mood: in pain
Current Music: head banging industrial
yee-ikes
it's anothr one of those fever, chills, vice grip head pain - so much pain that it makes me nauseous -days. flat out. cant get up - typing from bed. it's better now than a few hours ago - had to ask someone else to take pk to school. Brk is here now and I am having tea.
I think having ivig (yes- we found it but had to get it from two different distributers & the second kind was really rough on me) AND chemo in the same week was too much.
painpainpain
And I am being stubborn (no, not me!) about pain meds. Just refusing them because yes they will help the pain but at a cost to my well-being. they mess up my digestive system and wreak havoc and it just isn't worth it in the long run. so I ride out these crazy days in whattever ways I can.
we're giving up on looking for housing for a while- the magical dragon heart place wanted a single commuter as it turned out. very disappointing. and it's too much to do with being a good mother, planning the party and being sick. so we'll wait.
so grateful for Brk and DB - great to have them as a family. We make meals and watch family movies on Sunday nights. Brk bakes with him and DB and Pk carved pumpkins to great success. Pk has lots of love and time for play and homework and being outdoors. Last night Pk and I snuggled in the big outdoor chair and watched the almost full moon with rows of whispy clouds surrounding it. very rich.
k - just wanted to check in
thanks to those of you participating in my birthday - I appreciate it.
V
Not Right
Posted on 2005.10.24 at 13:12
Current Mood: useful
Current Music: Nobody Knows The Trouble I Seen
Oh yeah, Baby. it's a roller coaster ride. Sometimes I am up, sometimes I am down. Last week brought gripping headaches and fever and chills (again.) I broke down and took a pain med but it made me sick so I continue to avoid that. I also avoid the hospital. Sometimes that means taking my temp and saying "OK If it doesn't go down in 20 minutes, we'll go." and then praying like hell that it goes down! I HATE hospitals but I've been warned that if I get a blood infection, it'll kill me in 24 hours if untreated. Geez. They really know how to intimidate a gal!
I only have a moderate headache at the moment & even that would improve if I would get off my butt and take a handful of advil. No complaints. And, wiith the exception of a persistant but non-threatening cough - I am doing A-OK.
DB, Pk and I had a lovely time at L & L's party in Berkeley for the Portland gals. Wonderful to see so many workers. Laughed a lot. Talked a lot. And Pk was thrilled with both the fog machine and the whipped cream.
I got my first bill from the IVIG treatment that I got in the hospital last spring (before the allotments got too small to accommodate me there.) The drug alone - the IVIG - was $26,897 a DAY. For three days every three weeks. That's not even including the nursing care, the needles, the saline, the hepron, on and on and on. I wonder what it will cost at home?
DB - bless her soul - said (with earnest moral conviction) "That is not right."
Unbelievable. And yet true. That is three TIMES as much as the doctor's office (where the Federal government won't let me get treated) charges.
---------------
And, now, for a political ad:
If you live in CA, by the way, please vote no on Prop 78 and yes on 79.
-------
If any of you know H MacAllister from her fabulous queerfatrevue activism and are NOT hooked in to how you can help, let me know. I feel good about finally having a use for walking in that lonely place of only known survivor. It's been over 3 years since my first symptoms of PNP - in Dec. it'll be 3 years since the cancer diagnosis. No other known survivors over 2 years. I can safely say that I have some experience to share with her. And that I can be of use.
THAT is totally cool.
OK - I am off to vaccuum and quilt. And then to pick up Pk - who (surprisingly) has chosen to be the grim reaper for Halloween. Hmmm.
Love, V
PS OOoooo - I forgot to say that I am mighty excited about the party - people are figuring out costumes - flappers, gangsters, 1930s Hollywood / Greta Garbo, Okies from the dust bowl, dandy chaps who play polo...fun fun!
CA Voters
Posted private on 2005.10.24 at 13:44
Current Mood: patriotic
Current Music: America the Beautiful
CA Green Party sez:
NO Proposition 73 - Waiting Period and Parental Notification Before Termination of
Minor's Pregnancy.
This proposition places a notification requirement on doctors before an abortion procedure may be performed on a minor. Unless the minor applies for a waiver from a judge within the doctor's jurisdiction, the minor's parent or legal guardian must be notified before the procedure, and a 48-hour waiting period must be respected.
Greens advocate full access to safe and reliable reproductive information and services – including abortions. This should be true regardless of whether teens have been abused, are part of functional or dysfunctional families, or they live in rural or urban areas. This initiative is one more step in the process to limit women’s reproductive choices. All research shows that the availability of reproductive information and services lowers the incidence of teen pregnancies and abortions.
Proposition 74 - Public School Teachers. Waiting Period for Permanent Status.
This proposition would increase the probationary period for teachers from the current two years to five years. During probation, teachers can be dismissed without cause or reason.
School administrators have arbitrarily dismissed probationary teachers to intimidate new teachers from speaking up at meetings or engaging in union activity. This initiative appears to be designed to keep new teachers intimidated, inactive, and fearful of supporting their teacher’s union for a full five years. This would greatly weaken California’s teacher unions at a time when they (and all of public education) are under heavy fire from the Schwarzenegger administration.
Contrary to the inferences of Proposition 74’s advocates, permanent teachers do not have tenured status. They can be dismissed for a variety of reasons specified in the state education code. But permanent teachers have the right to due process; they cannot be dismissed without cause.
Proposition 75 - Public Employee Union Dues. Required Consent for
Political Contributions.
This initiative would, "Prohibit public employee labor organizations from using dues or fees for political contributions unless the employee provides prior consent each year on a specified written form" (from official summary).
The big businesses who funded Prop 75 want to weaken the labor movement on the political front, and they want to cut wages, pensions and other benefits for workers.
Currently, most unions offer an “opt-out” check box on their union form for those members who do not want their dues used for political purposes. This initiative would change this to an “opt-in” method that each member has to renew each year to support their union’s political activities.
In the interest of fairness, the equivalent for business would be to get the approval of stockholders for political donations that a publicly held corporation wants to make. But we’re not hearing this from the backers of Prop 75 even though businesses far outspend working people in political contributions.
NO Proposition 76 - State Spending and School Funding Limits.
This initiative cuts school funding by over $4 billion every year – $600 per student – leading to more overcrowded classrooms, teacher layoffs, and fewer textbooks and classroom materials. Specifically, it would tighten the cap on total state spending; end Prop 98’s protections for schools and colleges; and require automatic cuts across all social and civic services if tax revenues drop.
We think some things are too important to cut – things like education, health care, and fire protection. Schwarzenegger and other Prop 76 proponents want to impose required cuts to vital services while prohibiting cuts to special interests like the California Dried Plum Board and “pork barrel” road building projects.
Greens believe that fair taxation statutes will be needed to finance all state expenditures, and that legislators should be increasingly more responsible to the taxpayers for increasing Public Education spending in particular. Legislators should NOT be forced by Prop 76 to either reduce spending to match revenues, or to yield responsibility for needed spending reductions to the Governor.
???? Proposition 77 - Redistricting.
The Green Party could not come to agreement on a position. NO and NO POSITION were the predominant votes.
This initiative would create a constitutional amendment requiring a three-member panel of retired judges to draw congressional and state legislative districts, rather than the members of the current legislature. This would supposedly take the party politics out of redistricting. The redistricting would occur as soon as possible.
YES on 77 – Opposing this bill would put us in the same camp with Democrat and Republican incumbents who want to continue to run in their gerrymandered districts. This bill does nothing for Greens, and still makes it look like something is happening. No matter how they draw the districts, only the Republicrats can win due to the lock that corporate money and winner-take-all voting has put on elections.
NO POSITION on 77 – Other states have tried independent or bipartisan redistricting panels. These efforts did not result in a significant difference in which party gets elected in any given district. Passage of this proposition may bring some relief from the extremes of gerrymandering, but let's recognize that it will not be a significant improvement in democracy for Californians.
This is a distraction from real reform. The problem is single-member (one winner) districts using winner-take-all voting. There is no gerrymandering scheme that will accomplish fair and balanced representation of voters under such a system. The solution is multi-member districts using proportional representation voting. This provides majority rule and minority representation regardless of how boundaries are drawn.
NO Proposition 78 - Prescription Drug Discounts (business version).
YES Proposition 79 - Prescription Drug Discounts (consumer version).
Health Access California, and other labor and consumer groups, sponsored Prop 79, which would use the purchasing power of the State of California to negotiate prescription-drug discounts for millions of Californians that now pay retail prices for these medications. This measure is opposed by "Big Pharma," the prescription drug industry, which also sponsored a counter-measure, Prop 78.
The San Francisco Chronicle (July 13, 2005) ran a front-page story listing 12 drug companies which have contributed $43 million since June 16 for this battle. Pfizer, Merck, and GlaxoSmithKline each contributed $8.5 million to their industry's "California Initiative Fund."
The Alliance for a Better California (the coalition of nurses, teachers, state employees, etc.) also worked to put Prop 79 on the ballot. Much of the language came from a measure that passed the legislature last year but was vetoed by Governor Schwarzenegger.
The major difference between these Props is that Prop 79 is mandatory for the drug companies. Firms that don't provide medicines under this program for the same price they charge MediCal could be barred from selling to the State's MediCal program. Under Prop 78, drug company participation is voluntary.
????? Proposition 80 - Electric Service Providers. Regulation.
The Green Party could not come to agreement on a position.
This initiative stems from a bill passed in the CA legislature (AB 2006) in 2004 that would have required utilities and other power suppliers to plan rationally for the future by re-regulating energy in California. Governor Schwarzenegger vetoed it, preferring "competitively priced" electricity over regulated electricity, even if residential rates go up in the process. So, TURN (The Utility Reform Network) is taking the bill to the voters.
YES on 80 – Blackouts due to power shortages and market manipulation did not exist in California prior to deregulation (all previous blackouts resulted from transmission or distribution outages). This proposition re-establishes legal requirements that were abandoned during deregulation. “Integrated resource planning” prohibits large commercial customers from jumping back and forth between “direct access” (power from independent providers) and utility services, thus providing more certainty to utilities in their purchase planning. There are also requirements for “adequate reserves” to prevent blackouts due to power “shortages,” as well as restoring obligations on corporations supplying energy to California - PG&E, SCE and SDG&E - to serve California consumers rather than out-of-state energy suppliers.
Other favorable aspects of this initiative are the requirement for all retail electric sellers to increase renewable energy resource procurement by at least 1% each year, and moving up the date of the state's 20% renewable energy requirement from 2017 to 2010 (decreasing our dependence on expensive fossil fuels). Similarly, “first priority for energy efficiency” means efficiency programs will be pursued before new power plants are built.
NO and NO POSITION on 80 – It foolishly gives even more authority to the CPUC, an agency frequently criticized by consumer groups. It locks communities into long term energy contracts with private corporate energy providers. It does allow Community Choice Aggregation programs, but the language is not clear and comprehensive so it could seriously undermine a community’s ability to start a CCA.
.
.
Subscribe to Posts [Atom]
