Di Has Stories…

(and they’re all true)

How Do They Do That? March 1, 2009

Filed under: bitching,books,crazy family,shit i believe in — Diana @ 10:22 pm

I will be the first to acknowledge that I am a bit of a grammar Nazi.  I blame this on my mother, who is Canadian, and taught me that using poor grammar was like stabbing Jebus in the eye.  I think she learned this from my grandmother, who was intelligent, literate, and spoke the Queen’s English.  (She also referred to the Queen as “Liz”.  I’m not sure QEII would be appreciative.)

As a result, I was excellent at grammar in school, and have had a hard time adjusting to a world that does not value grammar as I do.  When text messaging came along, it nearly drove me to drink.  It’s hard to be grammatical, especially when you only have a few characters in which to express yourself.  I have learned to deal with it (sort of) and try not to let the bad grammar of the world get to me.

Until now.

I get most of my books from PaperBackSwap, which is mostly free, and also gives me the opportunity to browse books that I might not have otherwise found.  I recently got a copy of How Do They Do That?, which is fun not only because I get to learn all sorts of geeky facts, but because it was written in 1981, and lots of those geeky facts are no longer correct.

However, I have been prevented in fully enjoying this book because of the way that questioned are phrased:  almost all of them start with “How do they….”

This makes me crazy.

First of all, people, there is no They.  You can spout your conspiracy theories until you are blue in the face, but there is no big, faceless They.  Also, the They that you reference in one question (How do They measure the universe?) is not the same They in another (How do They get lead into a pencil?).

While I understand using They in the title, I do not support the use of They in the rest of the book.  It’s just damned laziness.  Either name a specific person, or rephrase the question.

I have spent most of my reading time with this book not absorbing the facts, but re-writting the questions:

How do they determine a baby’s sex before birth? WRONG.  How about: How is a baby’s sex determined before birth? (This is one of the funny entries for me, reading 28 years later.  Not a mention is made of ultrasound sex determination – you had to have amnio back in the day if you really, really wanted to know.)

How do they wash the windows of the World Trade Center? Sigh.  How are the windows of the WTC washed? (First, horrible, thought that comes to my mind:  they don’t.)

How do they get natural gas to your house? No.  How is natural gas delivered to your house?

Another pet peeve:  Mr. Peters, my beloved 10th grade English teacher, drilled the concept of parallelism into my mind.  If I’ve ever helped you with your resume, you know about this particular obsession.  In short, if you pick a verb tense/way of doing something, keep going with it.

Which makes me even more befuddled about this book.  Many of the questions are styled How do they…. , but some of them are phrased as I’ve mentioned above.  There is no consistency within their own naming conventions!

Maybe I just need to put this book down and realise that it will make me so mad that I can’t get through it.  Or, maybe, this book is going to be updated and reissued, and they need my help in re-writing…..I’m available.  And cheap.  Call me.

 

Disappointment: The 2008 HAEA Conference October 20, 2008

Filed under: being a sickie,bitching,shit i believe in — Diana @ 9:17 pm

This weekend I attended the annual conference of the US Hereditary Angioedema Association conference.  It was the first conference I’d attended – I’d actually registered for the last one in St. Louis, but that was right when we closed on the house, and I didn’t think that I could move house and drive to St. Louis all in a couple of days.

So I was really excited to go this year.  As a mutant (someone with no family history of HAE), I’d never actually met someone with HAE, and I was so excited to do so.  I’d get to meet other people that swell up like I do, and ask them questions about what’s normal and not normal, and find out how many “mutants” there are, and, and and….I was just about bursting all last week.

Because money is so tight in our house right now, I’d gone back and forth as to whether to go.  But after last week’s news that the drug we’ve all been waiting for is approved, Jeff and I decided that the money would come from somewhere, and that I was going to go.  It was too important for me to get the information to not go.

I got to Chicago at about 3:00 p.m. on Friday, and checked into my hotel with one of my roommates, Patty.  She is also a mutant, and 57 years old.  We talked for a few hours before it was time for the cocktail hour that kicked the conference off, and then went downstairs for free booze and appetizers.  We met a mother and 19 year old daughter – the daughter is also a mutant, and an older couple where the woman has HAE.  We also got to talk to one of the scientists from the drug companies where I learned a little something about my own treatment options.

(Background:  Hereditary Angioedema is caused by the absence or malfunction of the blood protein C1 esterace inhibitor.  There are several types of HAE:  Type I’s blood tests show an absence of the C1 protein.  Type II’s have the protein, but it doesn’t function properly.  Type IIIs have “normal” blood results, but show all of the symptoms and may react positively to FFP (fresh frozen plasma) treatment.  I have Type III.  The scientist that I talked to said that there is a 30% chance that the newly approved C1 treatment will work for me.)

The next morning we all met for a very nice breakfast (you know, more than doughnuts!!), and settled in for the meetings  First there was a reenactment of the presentation before the FDA Blood Products Division, which was very effective – I can now see where there was an almost unheard of unanimous vote to approve the C1 product.  This was followed by an address by Dr. Marcel Levi, who walked us through the use, effectiveness, and safety of C1 in Europe (it’s been legal there for 30 years) and the studies that back up that use, safety and effectiveness.

After that, the drug companies started talking.  First was LevPharma, whose product, Cinryze, is the newly approved product.  They talked about the clinical studies (an oddity of the US drug approval process – even drugs in use for 30 years elsewhere have to go through all the studies and back up that a brand new drug does), the safety, efficacy, and presumed time to market.

During the question and answer session is when i started getting nervous.  It turns out that LevPharma is only five years old, and was started for one purpose – to bring Cinryze to the market.  Also, LevPharma has been bought out by ViroPharma (after which shares in ViroPharma fell 20% according to SmallCapInvestors.Com)  for $443 million dollars.  ViroPharma itself only has one drug on the market.

The folks from Lev/Viro were answering questions about insurance coverage and how to get the drug. They have set up a call center – Cinryze Solutions – to help people deal with their insurance companies, and were trying to get all of us to sign up for the program, which included all sorts of personal information that I was not terribly interested in giving out.  The women running the table were running people down and using their names to guilt them into signing up for the program. I’m pretty sure it was less about “helping” the patient and more about knowing who the captive market is.  The entire way it was approached made me uncomfortable.  And it’s not a service that I need – I’m a professional insurance agent, and have worked with appeals for years.  If I need additional documentation, I will turn to my doctor, not to a drug company.

After LevPharma was done, CSL Behring started talking.  They are the ones that actually have the drug approved in Europe.  They have been in business for more than 100 years, and only work with orphan diseases and biologics.  Their presentation spewed the same research statistics and findings, which isn’t surprising, as there is only ONE way to treat this disease that is effective (replacing the C1 that the patient doesn’t have).

This is where I started looking at the schedule.  Out of an eight hour day of meetings, five hours were taken up by pharmaceutical companies, an hour and a half was for us to “interact” with the pharmaceutical companies, and only an hour and a half was an open forum for patients to talk to doctors and pharmaceutical company scientists.

This is not what I was going for.  I wanted interaction with other patients – there was no time for that.  I wanted some interaction with doctors – that only happened with the pharmaceutical company people.  The HAE people were totally kissing the asses of the pharmaceutical companies.  They were branding their own website over any other information source, but trying to say that they were “drug-neutral.”  (It’s true – it seemed to be that they’d be ok with any of the drug companies.)  I found out that not only were the pharmaceutical companies underwriting the entire conference, but they were also providing financial assistance to the patients.

They were trying to bribe us into using their product….when their product is the only thing that can save our lives.

I felt dirty.  I thought that this was a time for patients to get together, build a network, and learn from each other.  Instead, it was a three day opportunity – that I couldn’t really afford to go to – to be marketed to by Big Pharma.  All I learned was that I was a big source of money to these people*, and they wanted to make sure that I was buying into it.

*(It’s estimated that every dose of the C1 will cost $1,000 – $1,500.  Patients must take one to two doses every three to five days.  This means that I will give them $73,000 – $243,000 per year, every year, for the rest of my life.  At least until I hit my insurance lifetime max, which I will in 12 – 41 years.)

I’m pissed.  I’m pissed that pharmaceutical companies behave this way – I knew about these sorts of things, but had never seen it in action.  And I’m also irritated that so many of my co-patients (and that’s how we are referred to – as patients) lapped this shit up and expressed such gratitude for being ripped off and marketed to.

I’d had enough.  I went home.  I now have to think about whether to continue my relationship with an organization that is really just facilitating marketing to Big Pharma.  I am once again disappointed in an organization that I thought was only looking out for me and others like me.  As usual, we are just consumers.

 

Oh, noes September 13, 2008

Filed under: being a fattie,being a sickie,bitching — Diana @ 2:46 pm

A few months ago, having had an ultrasound for suspected gallbladder issues, it was found that I have Non-Alcoholic Fatty Liver Disease, which is a result of unchecked metabolic syndrome.  (I wrote more about this in my sickie blog.)  The treatment for this is pretty easy – Metformin, baby, Metformin.

Let me just take a minute here to tell you how very much I heart the Metformin.  So far, it has made my skin clear up, my depression abate a bit (during a time in which it should have been flaring pretty good), my hair grow, my blood pressure go down (140/90 to 104/80), my cholesterol go down (230 to 177), and I’m starting to melt off some of the fat that is stored when your body doesn’t know what to do with sugar.

And that’s the deal with Metformin.  Basically, left to its own devices, my body doesn’t know what to do with sugar, so it wants me to eat lots and lots of it, and then it turns it all into fat (have I mentioned lately that I gained 100 pounds in about five years with no change in diet?)  Metformin makes my body figure out what to do with sugar in a more appropriate way, and tells my body that to have too much of it is poison, and will immediately expel said excess in ways that are unpleasant to me, the experiencer, and you, the passer-by.  Just trust me on this one.

For the most part, that’s ok.  Now that I don’t crave sugar every moment of the day, I’m not also eating every moment of the day, and I’ve been able to get rid of a lot of my food obsessions, which is only good.  However, the amount of sugar that I can tolerate on an average day is pretty low.  Very, very low.

For the last few weeks, since my dose got increased again, I’ve been able to have a daily Coke – sometimes two – and maybe one other sweet thing if it was around and I wanted it.  I know that I should give up the Coke, cause it’s loaded with high-fructose corn syrup, which is really Death Made By Corn.  But, I say to myself, I’ve gotten rid of it in the rest of my diet, and lots of other horrible things, so one Coke isn’t going to hurt me – all things in moderation, right? (Let’s not talk about the awful fucking campaign the makes of HFCS are putting on….read about it here.)

And, frankly, I don’t fucking want to.  Part of my journey on body acceptance and Health At Every Size is learning to not deprive myself.  I like to eat, damn it, and although I generally make good choices, I do make some less than great choices, and that’s ok.  It’s all about the big picture, and not buying into my old habits of disordered eating.  So the Coke stays.

The last few days, I haven’t been feeling s’good.  Not anything terribly definable, just a general malaise and some fatigue and not quite feeling like myself.  I especially noticed it at the Tribute to the Classy Broad on Saturday  last, and figured it was just because I wasn’t drunk.  But it’s been going on all week, and my excuses have run out (I’m tired, I’m hungry, it’s raining,  fucking Republicans….)

Until this morning.  And by this morning, I mean when I finally got around to eating “breakfast” (summer sausage, crackers and cheese) at about 2:00 p.m.)  I had my tasty, tasty meal along with my daily Coke….

And an hour later felt shaky, like I needed a nap, and a bit depressed.  Oh, and I’m not going to talk about what’s going on in the bowel region, because I have too, too much love for you, dear reader.

Et tu, Coke?

Yes, it seems that my friend, my love, my partner in life since I was 15, has turned against me.

Bastardo.

So, I guess I am going to give up the Coke.  Not because of the million reasons that it’s not good for me, but because my body has decided for me that the bubbly combination of HCFS and awesome is no longer good for me.

Damn it, liver – you better be worth this.

 

This makes me sad August 27, 2008

Filed under: bitching,political,shit i believe in — Diana @ 9:06 pm

Lesbian activist Del Martin dies months after marrying partner

It makes me sad not only that she died only two months after getting to marry her partner of over 50 years, but that assholes like this one think that this is “God’s” comment on gay marriage.

Look, you little wanker:  I don’t care what kind of marriage YOU want to have, but everyone is entitled to the kind of marriage THEY want to have.  My hetero-normative one man/one woman marriage sure as fuck wouldn’t be sanctified by whatever crazy church you belong to either – does that mean that I am not allowed to be married?  When will our country learn to butt the fuck out of people’s business?  If I want to make a legal arrangement – which is all marriage is in our country – with a person of the same sex, so fucking what?  If I want a woman to be making MY end of life decisions, or take care of my children when I die, how does that violate the sanctity of YOUR marriage?

Maybe we need to move to a system like France has – you have a “civil” ceremony to be married in the eyes of the law, and if you want, a church ceremony to be married in the eyes of whatever the fuck you believe in.  And that’s WHATEVER you believe in – unlike you, Stevie D. Williams, I don’t think that I get to have a say in what other people believe.  You have as much right to follow your crackpot god as I do to not follow it.  The difference between me and you and the rest of your ilk is that I let people do what is right for them and respect their choices.  I don’t believe that there are all that many absolute rights and wrongs.  And I don’t believe that it is my place to make judgments on anyone else’s way of life, or convert them to my way.

And YOU, Tiggertown, have just shown us your ignorance.  Yes, Del was admitted with a broken arm.  You know what happens to 87 year old women when they go to the hospital, even with “minor” ailments?  They get pneumonia and die.  Cause they are 87 fucking years old and not in great health.  Reading the rest of your comments did not improve my opinion of your intelligence.  Maybe you should actually read and learn about the topics you are commenting on instead of showing the rest of the world what a jack ass you are through the “anonymous” commenting.

Back to my original point:  Jeff and I were old enough when we met that we will more than likely not spend 55 years together, which makes me sad, but he was worth the wait.  I realize that I am lucky to be able to solidify my relationship with him so that he can make decisions for me, have equal access to our children, etc.  It saddens me that those of my loved ones that do not have hetero-normative relationships don’t get to have those same rights.  And it’s just plain wrong.  If, as the christians say, we are to follow the Golden Rule, how is denying men and women the chance to marry doing unto others as you would have done unto you?  If you are following this rule, then you are a fucking hypocrite to stand against gay marriage.

Peace to your memory, Del.  Thanks for all of your work.

 

I’m Rich!! August 20, 2008

Filed under: bitching,fun stuff,things that make you go hmmm — Diana @ 9:44 pm

The other day, I got this email:

Congratulation, You Have Won £800,000.00 GBP

11 G Lower Dorset Street
Dublin 1
Ireland

Result: http://www.irishlotto.net/

This electronic mail is to inform you that you have won the sum of £800,000.00 (GBP) in the Irish Lottery Official On-Line Drawing.

According to exchange rates tabulated on the official  day of the drawing (July 26, 2008), the aforementioned
jackpot prize amount is equivalent of $1,621,435.38 (USD) or 1,041,188.51 (Euros), less taxes which are to be extracted by the British Governments Tax and Revenue Division prior to distribution of the winnings.

The official drawing for the aforementioned jackpot was performed at the greater Dublin Office of the
Irish Lottery Commission at 12:01pm on July 26, 2008, and was overseen by the accounting firm of House
& Beckermann LLC. In the above noted drawing, your contact Email was selected from a pool of 24,667,309 potential winners.

Your winning Numbers are;
Winning Num: 23, 30, 32, 36, 39, 40, Bonus 34
Batch Num: Batch: R3/A312-59
Reference Num: Ref: LSUK/2031/8161/05

For additional information you must contact the commission’s fiduciary agent In the United Kingdom at the below noted email address;

Mr. Terry Cole (Fiduciary Agent)
Email: ir.terrycole@hotmail.co.uk

For verification please provide your:

1.Full Names
2.Full Address
3.Telephone Number

and your above Batch and reference Number when responding.

Thank you and congratulation.

Thomas Stinson, Online Coordinator
Fudiciary & Notification Department
Lottery Commission of Ireland.

_______________________________________________________________

I noticed some issues with this email, and sent “Mr Stinson” a reply:
Dear Irish Lottery:

Please note that:
(1) Ireland uses the Euro as their measure of currency
(2) Ireland is not a part of Great Britain, and therefore GB would not be taking taxes out of the payment.

If you are going to write a scam email, please do some fucking research beforehand.

Love, Di
______________________________________________________________

Oddly, I didn’t get a response.  Huh.

 

Old Navy, I’m Done With You June 8, 2008

Filed under: being a fattie,bitching — Diana @ 8:49 pm

Dear Old Navy –

You used to be my favorite store.  You let me get fun fashions at affordable prices, and had nice, basic stuff that I could build both a work and a “play” wardrobe with.

But then, Old Navy decided that they no longer wanted fat people in their stores, and went “exclusively online” with women’s plus size fashions.  That meant that I could no longer go shop at my favorite store and instead had to buy from the website if I wanted something.  I don’t like doing that – not only are your sizes a bit off so that I like to see how the clothes fit on me, but I am a “browsing” shopper – I don’t usually come into a store with a fixed idea of what I want.  I liked being able to go into Old Navy and find cool stuff that I wouldn’t have looked at on the website.

Now Old Navy won’t take returns at the store from the “exclusively online” women’s collection.  When I do order something online (which iI don’t like doing) and it doesn’t work out (which often it doesn’t), I can’t even go to the store to return it and browse for other ideas- I have to make a whole separate trip to the post office (which somewhat negates the negligible “convenience” of shopping online to begin with).

I hear you loud and clear, Old Navy.  You don’t want teh fatties in your store.  Our money isn’t as good as anyone else’s.  We’re not worth looking pretty and having fun, affordable options.

You now have one less fattie to deal with.

Are you pissed too?  Write to Old Navy at custserv@oldnavy.com

 

Our Tax Dollars, Hard At Work May 9, 2008

Filed under: bitching,life in the city,Minnesota — Diana @ 11:20 am

I heard about this on the radio this morning. In short, this asshole wants to fight about an education bill because it would make hockey the official sport of Minnesota. What I heard him say on the radio this morning was basically: all sports are important. We can’t just single one out to the be “official” sport of Minnesota. If kids are going to play a sport, they will feel “pressured” to play hockey because it is the “official” sport of Minnesota.

Because I was in the shower when I heard this, and I do my best thinking in the shower, I got to thinking about this statement. Does saying that something is the “official” something of the state really do anything?

The State Muffin of Minnesota is the blueberry muffin. Does that mean, when I am in the market for a muffin, that I let that sway my muffin decision? No. Jeff will always get a blueberry muffin because he likes them, and I will generally get something else because I’m not a big fan of the blueberry. The fact that some school children in 1988 brought Governor Perpich a batch of blueberry muffins has nothing to do with my decision. In that way, all muffins are still important.

When I have my muffin (I prefer cherry chocolate chip, thank you), I can guarentee you that I will not have it with the Minnesota State Drink, milk. I don’t like it, and I’m not going to drink it. I don’t care if it is the state drink.

The State Photo is Grace. (I actually always thought it was a painting. Whoops.) The next time I look for something to cover my walls, is the fact that this is the official photo of the State going to “pressure” me into getting this one?

Seriously. Not only is this an absolutely inane argument, I can’t believe that someone is (a) making a fuss about it, and (b) that there is so much coverage. In fact, I’m a wee bit embarrassed to have put my two cents in. I will admit, however, that I have a deep love for useless knowledge, and did happen to know the State Muffin off the top of my head. If you want to learn more about the official whathaveyous of Minnesota, check this out.