February 6, 2009

'Mom cooks me ... like a turkey'

A 4-year-old's heart is breaking because her Mom "doesn't love her anymore."

My heart breaks when I read that her mom put her in the oven and "cooks me like a turkey." I had hoped it was a misguided mother's attempt to get her daughter warm during this cold spell.

But that wasn't the goal of the Hamtramck's mom, who also singed her daugter's eyelid with a screwdriver,

I have so many questions. How could the girl stand still long enough for her mother to do that to her face?

How did the mother get her into the oven? Pretend they were acting out a fairytale? Shove her in?

I want to know more. I know that I can't. I fear others will follow the mother's lead.

Why is it still so easy for some to become parents.

It is enough to distract me from the horror of the new mother of 8 babies, who already is mother to six children. It is not the size of this new family or even that all of the kids are under 8. It's the mother and how unlikely it is that she will qualify as a good mother anytime soon.

She's been on disability for at least 5 years - pain from an on-the-job injury prevents her from working and led to her divorce in 2008. (She says depression from pain led to her marriage disolving. Is her ex taking the high road and not sharing his side, or is no one asking him?)

How much did birthing and -- I hope -- taking care of the first six contribute to her disabling pain. Why in the midst of the physical pain and emotional pain of splitting from your husband would you choose to have more children? And what sane medical staff agreed to do the procedure?

Why is it so easy for some to become and stay parents?

It is almost enough to make me want to stop reading the news.

Happy Tweets made me 'pretty' mad

Oops. I learned early this morning two things - I can still jump (to conclusions) and hot buttons stay hot.

It started with a visit to Happy Tweets, where I put in my Twitter name and learned I was "pretty" with a score of 512.

Wait - don't I have the green-haired cartoon as my profile pix? That's pretty? And what's pretty got to do with happy?

See, I am striving to be happy and positive and grateful and even optimistic. I want good health. But pretty stopped being a goal a long time ago. I mean whose defination of pretty reigns supreme? And how come it is usually women who cover up their faces and lips with all those layers.

Now maybe part of the sensitivity is all the hoopla over "He's just not that into you" and Jennifer Aniston's comment on Jay Leno last night that when she was 10, her mom was saying you should never leave the house "without your eyes on." OK - 10? And did anyone ever say that to a male? (iPhone turned Aniston to Boston! and leno doesn't own his own name as an an URL and NBC uses TNT for the address? What does that stand for? The nightly tantrum?)

I digress. How can my tweets reveal that I'm pretty? I went looking for the interpretation, which meant I had to scroll down. That's when I saw the word "happy."

Pretty happy ... on the non iPhone days :-)

Facebook's 25 Things gets noticed by Time, NYT; gives me some attention

Wow, even Time and the New York Times have noticed this 25 things thing which was on Friendfeed -- even has a room there -- and has exploded on Facebook.

The Time article can tell you just how much time - OK, estimated time -- has been spent coming up with these lists. Author says about 10 minutes per list and there's been .... sorry, get that # from Time as I am Iphone blogging tonight so I cannot copy and paste. While you are there, you can also read some of the things the author wishes people would not have said. It's worth a read - and no names are attached, Midgets, why 1 teacher quit, something about middle school - surely that's enough to get you to go look.

Unlike some, I have enjoyed reading most of the lists that I have found on Friendfeed and Facebook. Susan Mernit has helped point out quite a few with ongoing posts that take just one item from each list.

Plus, I have had a grand time just clicking away on lists for folks I barely know or don't know. I didn't realize you could read some notes of non"friends" just by clicking on the word "note" next to their name. The openness depends on how users fix their settings - you can even control access by note. (I'm working on a Facebook privacy post, but that's for a day when I'm using a computer to blog.)

My reading lists of non-friends is fair - Google searches for "25 things you don't know about me" have been sending folks to my January list - the one with the photo of the Japanese bluegrass band. We will see if they come back.

February 5, 2009

A dozen eggs may make the difference

Sometimes life is not fair. You get yelled at, you want to yell. Or at least get rid of some of your frustations.

In an Everything Changes blog post, Kairol Rosenthal shares "10 truths,"about cancer and includes this:

4. Smash. Put one foot in front of the other, roll with the punches, yell, cry, and break things as needed.

I really liked this recommendation: Smashing a dozen eggs in the shower. She says it is "cheap, satisfyingly messy, yet easy to clean up." I can easily imagine tossing one hard against a shower wall. I can visualize the tension melt away as I plow through a dozen behind a closed door. With the shower running, no one would hear me either.

Yet my family thinks that's a bad idea because they say the eggshells won't go down the drain.

I brought up the idea during a discussion on why there"a a broken glass in the trash. Eggs would be cheaper then breaking glasses or china, I suggest. It is quickly pointed out the breaking was an accidental drop, not a throw. (And if I were an assuming type of gal, I'd say the looks suggest they would never throw china and wonder if I would toss in anger. I only throw when I need more broken china for a mosaic.)

They also don't want me kicking any of the dogs either, even if it is their howling, or yapping or snarling that sends me over the bend.

I guess that leaves blogging and/or journaling. (Yes, journaling on paper and in private so I can keep a few still talking to me. )

You know eggs would be faster. I think I even have a coupon.

February 4, 2009

Oh, say can you see?

I remember the day being a protective oldest sister changed my world

I accompanied my brother to his at-school eye exam and became quite upset with the doctor who kept asking the same question over and over. Finally, I had enough of the badgering.

"How can he tell you what direction something is pointing when it is just one big blob.?"

Whoops! His exam quickly ended and I was on that seat looking at what clearly was not a blob.

Long story short, i needed glasses.

I remember vividly the day I got glasses and saw individual leaves on a tree, spokes on a bike wheel and words on a chalkboard.

But why didn't I tell someone about my poor eyesight? Who knew it was poor?

At age 7 I thought the world was supposed to be a Monet painting, massive blends of color that left details to the imagination or a upclose investigation. I thought the way things looked in books and on television was part of the magic of the products. (Yes, I sat close to the TV.)

What we live with daily is our reality, our normal. With luck, the reality is good.

Or we find change through the right person or tool at the right time so that our world no longer is an Impressionist painting.


If I ask, will questions go away?

It's another sleepless night (and getting to Seattle remains on the bucket list) so if I out the questions that are inside will they go away? Or will I at least get answers?

Who is the Amanda behind the breast cancer donation fund on the Michigan form?

Was the Michigan man in the stem cell study selling cars, working in a car factory or managing something in an auto company when he was diagnosed with ms? Did he get a buyout? Is his career as a high school hockey coach fulfilling a dream? How much did it cost him to participate in the study?

Does a person come with a set number of hours of eyesight?

If so, is it better to ration how long and on what you use your eyes for or just splurge and do as much as you can now?

Did I burn too many hours on books and computer screens? Was it reading by flashlight under the bedcovers?

If you wait, do some cancerous cells heal on their own?

Do MRIs and the other fancy tools tell us too much today?

Is it lying to say you didn't have a fever if you don't take your temperature?

How long will a scale tell you the right weight?

Why do people without children make scrapbooks? What happens to their scrapbooks when they die?

How do they decide how many days you need to take an antibodic?

Why do I still want more hours in the day, heat in the house and friends to be happy?

What is happy?

Do you still need to use drops to make your eyes wet if you are crying?

Why isn't waking up enough?

February 3, 2009

Old drugs inspire hope for those with MS

Some good news about multiple sclerosis -there are some possible new uses for old drugs -- one used to treat leukemia and another to treat TB or leprosy -- could help with MS.

It also looks like those who can't face shots may be able to take an oral drug instead of shots

Over on the peer-reviewed Ploson (Public Library of Science, you can read about how Clofazimine could be a "promising immunomodulatory drug candidate for treating a variety of autoimmune disorders," including MS.

But for an "in English" explanation, I like what Julie Stachowiak's says over in her Multiple Sclerosis Blog:
"The drug clofazimine was developed in the 1890s as a treatment for tuberculosis. Clofazimine happens to also interfere with a molecular pathway that controls the immune response. Basically, clofazimine prevents signaling from the exterior of an immune cell into the interior (where it can "rev up" a response). They result? An inhibited immune system that is less likely to attack the myelin and cause the symptoms of multiple sclerosis (in theory)."
Wait, an even easier explanation is on the John Hopkins press release, starting with the subhead:
"Leprosy medicine holds promise as therapy for autoimmune diseases"
Johns Hopkins pharmacologist Jun O. Liu is quoted saying:
“We never expected that an old antibiotic would hit this target that has been implicated in multiple sclerosis, psoriasis and type 1 diabetes.

Until now, clofazimine’s presumed target was not human cells, but bacteria. But we discovered the drug has a tremendous effect on human immune cells that are heavily involved in both the initiation and execution of an effective immune response.”
The Johns Hopkins researchers uncovered the drug’s latest potential during an ongoing and exhaustive screening of FDA-approved drugs designed to identify new uses for them, according to the press release.

The Hopkins team was specifically hunting for immune system control agents within the Johns Hopkins Drug Library, a collection of more than 3,000 drugs in pharmacies or being tested in phase II clinical trials.

The press release, under the main headline "Teaching old drugs new tricks," goes into detail about the methods the researchers used. It was a lot of work but I'm glad they were so patient. More work to come.

My latest edition of MSFYI from MS Focus had this item on a possible oral drug from Merck:
Oral Drug Cladribine Reduces Relapse Rates in Trial

Another oral medication for MS may be headed toward the FDA approval process after meeting its end-points in a phase III clinical trial.

Cladribine, a drug already approved to treat leukemia, was tested in two dosing levels, both of which reduced relapses seen over one year’s time in people with RRMS when compared to placebo.

More than 1,300 people participated in the CLARITY study. Those in the “low dose” group had 58 percent fewer relapses, compared to those taking placebo; those in the “high dose” group had 55 percent fewer relapses.

Reported side effects included low white blood cell counts as well as headaches and cold-like symptoms.

The Pharmaceutical Business Review said that Elmar Schnee, president of Merck Serono, plans to apply for FDA approval of the drug’s use in MS in mid-2009.

For those with a fear of injections, an oral medication is good news, as so far the only medication that helps prevent relapses is given as injections. Some can be done by the person with MS; some only at a medical faciltity.

It is still hard for me to believe that the first drug known to help prevent MS attacks was approved by the FDA in 1993 - just a year before I was officially diagnosed. I was lucky to get Betasaron and years later Copoxone, which was approved in 1996. I've had fewer side effects from Copoxone and find it fairly easy to do the daily injection.

My knowledge of injections saved us 100-mile round-trip back to the cancer center for a day-after chemo shot. With coaching, my daughter also has joined "Yes, I Can" corps and can give herself a shot now.

By the way, I learned that there were at least 150 MS clinical trials under way in 2008.

You can stay up on the latest with the electronic newsletter from the Multiple Sclerosis Foundation. My mom discovered the quarterly print magazine MS Focus in her doctor's waiting room. I found the monthly e-updates over on the web site. Both are free.

No roll of blogs, but I read 'em

February 3 is Blogroll Amnesty Day, which started off when one blogger wanted to trim his roll of blogs without guilt. Other bloggers thought that was horrible, knowing that links to other blogs are one of the best ways to help folks find new blogs. They followed the lead of this blogger who turned it into a happy occasion by linking to five blogs that had less traffic than their own. (It goes without saying they had to like each of the blogs.) So despite the lack of a blog roll on the website, I can tell you about some of the ones I'm reading.

Mandy from MS Maze put together MS Bloggers at your Fingertips! picking it up from Lisa Emrich of Brass and Ivory who asked MS bloggers to spread Linky Love!

Traffic isn't a big concern in my decision to list some of the blogs I read. Do check out those two MS ones, plus Access Denied - living with multiple sclerosis and A Place to Scream and My journey with Multiple Sclerosis.

I switch diseases here (to cancer) but get inspired by Everything Changes

I still have a thing for libraries so SuperPatron stays on my favorites as does Ed Vielmetti's Vacuum.

And I'm really happy that Susan Mernit blogs a lot more often than she was for awhile.

And I have no idea why, but I am fascinated by the Junky's Wife.

Mmmm. I still remember when getting some co-workers to blog was a chore so it's nice to "keep in touch" via these blogs by folks who once worked or are working at The Flint Journal:

(OK, ex- and co-workers who else has decided that blogging isn't the end of the world and is missing from my list?)

Two of my favorite quilt blogs have Flint-area connections - Michigan Quilts and Joe the Blogging Quilter.

Flint Expatriates is in my Flint rss folder because I love learning about this city's yesterdays.

I'd like to tell you about more blogs, I have to go do more research on how a twenty-somethings pays the outrageous price of beating cancer, what can be done with glaucoma and how to kick the blues without seeing another doctor.

Oh yeah. I did write about some of my word-related blogs before, remember Blogs replacing need for editors, talk

February 2, 2009

What you didn't know I had in common (or not) with 25 who agreed to be FB friends

I twisted and turned and finally spit out another 25 things by looking at what I had in common with Facebook friends who had already a 25 (or more) list because I didn't want to add to anyone's to-do list.

1) Like Norma Z., I love coffee (before noon)

2) Like MBW, I asked my husband out first ... if you count asking "You don't want to go out with me, do you?" because I didn't believe the guy I was with was right about why Larry was suddenly around so much.

3) Like Jim of L-Town, I was the editor of the State News at Michigan State University. My "year" started early and ended late and had lots of ups and downs but taught me lots about running newspapers.

4) Like MWG, I reluctantly did the buyout thing. But it is turning out to be the best thing in the world as it is giving me a chance to mother my cancer-fighting daughter, work virtually with new people and organizations and rediscover passions buried by workaholic tendencies.

5) Like MB, I believe open communication is the best way to solve problems

6) Like EC, I worry a lot about food and believe that health care could be forever changed if we fed people right.

7) Like IC, I find being a parent challenging yet rewarding.

8) Like SC, I spend way a lot of time on news sites (and those dealing with journalism and writing and ... You get the idea... a lot of time)

9) Like CW, I love(d) to take baths to relax, then curl up with a good book. But I only do the book part now because hot baths (and weather) make me limp. (thanks ms).

10) Like AR, I believe democracy is not a spectator sport.

11) Like JWJ, I love bluegrass music. (I didn't know that until I moved to Flint, Michigan.)

12) Unlike BE, I was never fired from a job.

13) Like MH, I booked (and organized) concerts and I can’t go to a show now without picking apart the lighting, sound, stage presence, musicianship, etc. Like, had I been in charge of this weekend's 32nd Ann Arbor Folk Festival, I would have ....

14) Like JR, I sometimes need a hug.

15) Like PB, I sometimes try too many Facebook applications (but it's OK for folks to ignore them.)

16) Like MLJ, I am an Internet junkie.

17) I learned a lot about coaching writrs from Bruce DeSilva, Jack Hart and Don Fry.

18) Like RS, I will copy edit anything and everything before me, which is why I really hate it when I get a brain burp and can't find the perfect words.

19) Like VC, I can read type upside down. (These days, it needs to be large print though)

20) Like GG (who is on Facebook, but I discovered through his Life, Work and the Pursuit of Excellence blog I want to learn something new every day.

21) I learned a lot about Flint and Irish music from MK while producing and hosting a music show on Flint's former public radio station.

22) Like RJW, I'm not crazy about talking on the phone. I thought once I left the newsroom, I'd enjoy it more. I don't.

23) Like CC, I started drinking coffee with cream and sugar. I cut both out the first time I successfully lost 100 pounds.

24) Like SH, I don't have a mousepad.

25) Like SM, I enjoyed looking at this meme. My twist was picking out facts in common with people who posted 25 (or more) things about themselves.

(and almost everyone I named here has already produced a list of at least 25 things so I haven't added to anyone's To-Do list. There are two exceptions - one had already been tagged by others so peer pressure would guarantee a finished list as soon as the home repairs are done, I'm thinking; the second has sent me a zillion or more application invites and I miss our early morning or late night chats)

This post first appeared as a Facebook Note, where names, not initials, are used.