A Little Bit of My Kind World

WBUR, Boston's NPR station, has a new series called Kind World. The website describes it best:  "Kind World is a Tumblr that celebrates the kindness in strangers and the profound impact one human can have on another."

When they were looking for stories several months ago, the producer, Nate Goldman, asked a question about random acts of kindness on WBUR's Facebook page. I was surprised when my comment resulted in the Nate contacting me to see if he could record my story.  A couple days ago, several friends contacted me to tell me they thought they heard me on the radio. Here it is! (Please ignore the really bad haircut in this photo. My current hairdresser, Theresa at Eclipse, would be horrified.)


Now tell me your own story of a random act of kindness that changed your life...or maybe just your day.

Two Pints Down

I donated blood today. Two pints, in fact. So what? Well, I'm not ONLY mentioning this little tidbit to share an unflattering photo and brag about a selfless act of generosity. I gave blood today because I am no longer on the "can't donate" list.

Shortly after I was diagnosed with MS, I tried to give blood. I think it was at a work blood drive. When I skimmed the eligibility requirements they asked me to review and sign before sticking me, I was shocked to see Multiple Sclerosis on the list of diseases that were exclusionary factors for donating blood. HIV/AIDS, Hepatitis, and Multiple Sclerosis. There were probably several others on the list, but I stopped reading after seeing MS. HIV/AIDS and Hepatitis I understood, but MS???? I was really pissed off. What idiotic bureaucrat thought that MS was a contagious disease that could be transmitted by a blood transfusion????  After the anger, came the shame. I felt like my blood wasn't good enough for the Red Cross refrigerators. I was diseased and unworthy.

I think that may have been one of the first and only times I was really ashamed of my MS. I started this blog and went public with my diagnosis right away. I felt a strong need to share honestly, hopefully, and, whenever possible, humorously, about what was going on with me. but I also felt a responsibility to do what I could to remove the stigma and misconceptions associated with this disease. I didn't feel like I had anything to be ashamed of until that Red Cross donor information sheet told me that my blood was tainted.

A couple years later, I read a post somewhere about how the American Red Cross used to prohibit people from donating blood if they had MS, but that they had changed their eligibility guidelines in 2007. According to the MS Society, they did this rather quietly but I don't think they did a great job disseminating those eligibility changes to their field offices. Doing a quick Google search for this post, I found several offices that still list MS as an exclusionary factor in the "serious illness" section, including Northern Ohio,  Arizona, and the Red Cross guidelines distributed for a Princeton University blood drive.

The eligibility requirements now posted on the national American Red Cross site no longer even mention MS, which means that it is, rightfully so, no longer an exclusionary factor. When I gave blood today, they asked me many, many questions including whether I had been incarcerated (not yet), had sex with a man who had sex with a man (definitely not in the 12 month period they asked about), and had I recently had any piercings or tattoos (never with unsterilized needles and not in the last 12 months) but no one asked me about my MS.


I am worthy and I couldn't be happier. Although I opted for the gluten-free fruit snacks, I proudly wore my sticker all day today.

Fashion Plates Photos

Thanks to the MS Society, Salon Red, The Fashion Plates Committee, Lori Grande, ASA Photographic, my fellow models, and my beloved guests--Ruby, Laurie, Christina, and Jean--for making this a fabulous day for me.

MS Society Fashion Plates Luncheon & Fashion Show

Three weeks from today, I will, once again, strut the runway for a cause that is near and dear to my heart (and spine and brain). If you can swing the $100 ticket, I would love to have you join Ruby in my cheering section for the MS Society's Fashion Plates Luncheon and Fashion Show on Friday, November 2. To purchase a ticket for the event (or raffle tickets if you cannot attend), please visit the event page and put me down as your table captain (Lazy Julie Baker). Who knew that all I had to do to become a runway model was to get diagnosed with MS?

 

Fashion Plates

Real women, real stories…all for a good cause!

Please join us at

 “Fashion Plates”
A Fashion Show and Luncheon
to benefit the Greater New England Chapter of the
National Multiple Sclerosis Society
Treat yourself to an enjoyable afternoon of food, fashion and fun!

 Join us on
Friday, November 2, 2012
11:30AM-1:30PM

Sheraton Boston Hotel
Grand Ballroom
Boston, Massachusetts

Individual Seat:     $100
Tables of 10 Seats: $1,000

To purchase tickets, tables, or raffle tickets, please view the event website.

For sponsorship opportunities, please contact Staci Colby or call 781-693-5120.

Like us on Facebook

Presented by:

Ports & Company
and
Sheraton Boston Hotel

National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089

MS and the Presidential Election

I watched the Presidential debate and thought I would write a brief post before bed about how this election figures into MS.

The minute you are diagnosed with MS, you have a pre-existing condition. Before the Affordable Health Care Act was signed into law by President Obama, unless you lived in Massachusetts, you had no guarantees that you could get insurance if you changed jobs.

During the debate tonight, Mr. Romney said he would choose to get private health care. I bet he would. He and his wife (who has MS) can afford the best and the most expensive health care available. They will never know what it's like to worry about whether they can afford expensive prescriptions or even co-pays.

I knocked on doors and canvassed for President Obama during the months leading up to the 2008 election because of health care.  It is a personal issue for me and I hope it is for you, too. As a woman, a single mom, a feminist, a supporter of gay rights, and a person with MS, President Obama is the only intelligent choice for me.

My Vision

My vision seems to be deteriorating. It feels like my glasses are dirty even after I've just cleaned them. I always feel like there's a burned-out bulb in the overhead light of whatever room I'm in.

I wore glasses before I ever heard that I had Optic Neuritis, Uhthoff's sign, and another MS-related vision phenomenon that I already forgot the name of.  I stopped driving about 4 years ago when I realized I couldn't see well enough to guarantee the safety of my kids, me, or the other people walking, driving, or biking on the road.  

My latest vision loss could be an issue with my eyes, which would be good. Eye issues are correctable. I could just get new glasses with a stronger prescription.

It could be an issue with my optic nerves, however, which is not so good. Some optic nerve issues are not correctable like during my first exacerbation when the initial demylenation was happening and my optic nerves were damaged while they were exposed. Until somebody figures out how to reverse nerve damage, I'm kind of stuck with that.

There are also issues of optic nerve inflammation which are good. Well, not good, exactly, but reversible. I didn't know that some of my vision issues were in this category until I gave up gluten and the optic nerve inflammation that I didn't know was there was reduced and some of my vision was restored. This was actually very good. I dig it when I can change the status quo with a simple diet change.

My last MRI showed no activity on my optic nerves (or anywhere else on my brain or spine) but my vision is definitely worsening. When I mentioned my current vision issues to my neurologist a couple weeks ago, he gave me a referral to an neuro-opthamologist who will, no doubt, run me through the gambit of eye exams, including the one where I have to put my head in a mini planetarium and push a button when I see a blinky light.  I hate eye exams. I feel like I'm in an advanced class that I never attended before and it's exam day.

I never leave the neuro-opthamologist's office, the optometrist's office, or even the eyeglass store feeling like I am doing everything to see as well as possible. Maybe I didn't describe the blurriness correctly, maybe I didn't explain sufficiently how I see worse when I'm in motion, or maybe, the digital machine that's supposed to relieve me of the impossible task of saying whether a particular lense is better or worse, isn't calculating things appropriately.

Since I have no resolution to wrap things up neatly, I will leave you with a song:



And another:



And, what the hell, here's another:

 

The Common Cold

For the last five years, I've lived with what the National MS Society refers to as a "chronic," "progressive," and "often disabling" disease.  No biggie. I pride myself on my ability to stay mobile and positive and to focus on the things I can change. I am not lying when I tell people that MS has given me more than it has taken away. Truly. I actually believe that Pollyanna crap when it comes to my MS. I have low vision but I see life more clearly, blah, blah, blah.

But then, I get a simple cold and my whole mood goes to hell in a handbasket.

I probably get one cold a year. I'm 48 so I've had many, many colds. You'd think I'd know by now that when my throat aches, my eyes water, and my nose runs, I do not get fevers. Never ever. There are times, I would bet my last dime that I am burning up, but the normal thermometer reading reveals my hypochondria for what it is. Wishful thinking. It's not that I want a fever exactly, but somehow I feel like a fever would justify how awful I feel.

Women make fun of men for being babies when they are sick and sometimes I join in on the joke. You know what, though? I'm just as bad. There is a little piece of me that believes I feel worse than anyone has ever felt and that I deserve a pity party...except that I am not allowed to actually alter my life much when I get a cold. Life goes on. I still get the kids up and fed and off to school. I still go to work (although I work from home so I can look as yucky as I feel). I still make dinner and make sure kids do their homework and take baths before bed. I feel like a slug but I'm really just fantasizing about being a slug. I am woman, hear me sniffle.

An imperfect post

I haven't posted anything on this blog in months. That doesn't mean I haven't written anything. I've written hundreds of posts in my head and dozens of partial posts in draft mode (some of which were interrupted by children as this one is about to be). I've even written entire essays with plans to return to make edits, create links, load pictures, and generally make them better before publishing for the world (or my little piece of it) to read.

What's new with my MS?  I "celebrated" 5 years with MS on September 1. I'm still disease modifying drug free with no new lesions or active symptoms other than my continuing wonky vision. I have an appointment with a neuroopthalmologist who was recommended by my neurologist and who will, hopefully, refrain from making inappropriate comments about needing to shower with me in order to see how heat affects my vision.

I participated in the MS Challenge Walk as a crew member and felt like I was on the wrong side of the wall. Next year, I will be a walker. Stay tuned for appeals to join my team and or sponsor me.

I am strutting the runway again for the MS Society's Fashion Plates luncheon and fashion show on November 2. I'm looking forward to wearing beautiful clothes and having professionals do my hair and makeup.

What's new with family? My daughter is incredibly 13 and, in many ways, I am STILL 13. Nuff said.

What's new with love?  I am still single, or rather, totally single again and surprisingly ok with that.

And now my 9-year old is cuddling against me looking for bedtime reading so I am going to resist the urge to save this for later and simply hit publish. Be well. I'm going to try to make this a regular thing. Writers write.

Still in the Dead Dad Club

Tomorrow, it will be three years since I joined the Dead Dad Club. I found the post that I wrote a few days after he died and I'm amazed at my ability to think clearly enough to at least try to express my thoughts and feelings in words. The day he died and the ones that followed are all a blur to me now. I was in pain and I relied heavily on friends to continue breathing in and out after my dad stopped.

Reading that post made me think about where I am today with dealing with his death. Well, he's still dead and, to paraphrase George O'Malley, I still have trouble "existing in a world where he doesn't."  My dad and I only saw each other a couple times a year and spoke on the phone every couple of weeks, but I always knew he was there. And now he's not.

But then again, he sort of is.

He's there every time I make coffee and pour the first, very strong cup. I hear his voice saying, "That coffee will set you free!" and laughing like he was saying this "hysterical" line for the very first time and not the five hundredth.

He's there when I wear the hiking boots he left at my house the winter before he died. He told me not to bother shipping them back to him since he had no need for winter boots in Florida. He said that he would use them the following winter when he came for a visit. There never was another visit so I wear the boots with an extra pair of socks and feel like he's walking with me.

He's there when I hear sound bites from the Republican presidential primary candidates. I hear him dismissing them with a bunch of swears preceding "conservative crackpots." 

He's there when I hear Simon and Garfunkel or Jim Croce...or see a springer spaniel...or read a good deal on Craiglist...or breathe.

I miss you, Dad.

Thin Mint Fervor

I am still gluten free, but I am craving...absolutely jonesing, for a thin mint. 

You know, those little chocolate and peppermint-flavored wafers covered in dark chocolate deliciousness sold by little girls dressed in green sashes? They used to go door to door pushing their crack in a cookie but now they deal to their parents' work colleagues and from tables in front of grocery stores. Since I work from home most of the time and grocery shop online, I thought I was safe. And then I went on Facebook where an unsuspecting friend posted pictures of an open sleeve of thin mints.

And now, I am consumed by a desire for a thin mint. No...not true. I want many, many, many  thin mints. Although the box probably says that a serving size is 3 or 4 cookies, we all know that is not true. A serving of thin mints is a sleeve.  There are two sleeves and thus, two servings per box. Having just one thin mint would be like earning a single badge for your girl scout sash. A little silly, don't you think?

I tried really hard to raid my pre-grocery delivery cupboards for a worthy substitute, but no dice. The Panda Puffs cereal sans milk did not do the trick.  So, I Googled "gluten-free thin mints" and found this recipe from Baking Bites.

Homemade Girl Scout Cookies: Gluten-Free Thin Mints 

Ingredients:

6 tbsp butter, room temperature
3/4 cup sugar
1 large egg
1/2 tsp vanilla extract
1/2 tsp peppermint extract or oil
4 1/2 tbsp unsweetened cocoa powder
1 3/4 cup + 2 tbsp gluten free all purpose flour (pref. Bob’s Red Mill Gluten Free All Purpose Baking Flour*)
1/4 tsp salt

In a medium bowl, cream together butter and sugar until light and fluffy. Beat in egg, vanilla and peppermint extracts, followed by the cocoa powder. Blend thoroughly. Add in gluten free flour and salt and mix until mixture comes together in a soft dough and no streaks of flour remain visible.

On a large piece of parchment or wax paper, shape dough a log about 1 1/2 inches (or about 4 cm) in diameter. Roll up tightly and freeze for at least 1-2 hours.

Preheat oven to 375F. Line a baking sheet with parchment paper.

Remove dough from freezer. Dough may be very firm, and if so, allow it to sit for a few minutes before slicing.

Slice dough into rounds not more than 1/4 inch thick – if they are too thick, they will not be as crisp – and place on a parchment lined baking sheet. Cookies will not spread very much, so you can put them quite close together.

Bake for about 12-13 minutes, until cookies are firm at the edges. Allow to cool on baking sheet for 2-3 minutes, then transfer to a wire rack. Cookies will firm up more as they cool.

Cool cookies completely before dipping in chocolate.

Dark Chocolate Coating
10-oz dark or semisweet chocolate
1/2 cup butter, room temperature
1/2 tsp vanilla extract
1/2 tsp peppermint extract or oil

In a microwave safe bowl, combine chocolate and butter. Melt on high power in the microwave, stirring every 45-60 seconds, until chocolate is very smooth. Stir in extracts. Chocolate should have a consistency similar to thick chocolate syrup.

Dip each cookie in melted chocolate, turn with a fork to coat, then transfer to a piece of parchment paper or wax paper to set up for at least 60 minutes, or until chocolate is cool and firm.
Reheat chocolate as needed to keep it smooth and easy to dip into.

Cookies can be stored at room temperature (unwrapped) if they will be eaten within a couple of days, otherwise they should be kept in the freezer for long term storage. Makes about 3 dozen.

*Note: Other gluten free flour blends will work, but I had the best results with Bob’s Red Mill Gluten Free All Purpose Baking Flour. I’ve seen this at most supermarkets in my area and at stores like Target. You can also buy it online. The raw dough (which I don’t recommend eating in general) doesn’t taste great, but don’t be put off by that. This flour makes great gluten free cookies.

Ok. So now I just need to find a girl scout to bake them for me.

Random MS News and Stuff

Although this news story is about how Vitamin D3 can help aging eyes, I'm thinking that it can't hurt for optic neuritis and other MS-related vision issues. I am not offering advice for you, but I take 5000 mg per day of Vitamin D at the suggestion of my neurologist.

Here's an academic research paper about nutrition and MS, including the fact that "Gluten intolerance has also been implicated in MS." As I've mentioned here before, I gave up gluten almost a year ago and my fatigue has diminished and my vision has improved.

Here's an academic research paper about nutrition and MS, including the fact that "Gluten intolerance has also been implicated in MS." As I've mentioned here before, I gave up gluten almost a year ago and my fatigue has diminished and my vision has improved.

According to this article, Sanofi faces an uphill battle in the MS drug market. Won't competition be a good thing for us?

I regularly search for Multiple Sclerosis news on Google. Imagine my surprise, when I discovered this article saying that a "women scientist" discovered the germ that causes Multiple Sclerosis.

I never heard the term "InvisAbilities" until I read this blog post. I'm all for inventing new words.

The MS Society is studying the effectiveness of CCSVI on people with MS. 

Could a quieter MRI be on the horizon?  Woo-hoo! I mean...shhhh!