Maybe I'm Just Lazy: One Woman's Journey Through MS and Life

Blogging Again

noreply@blogger.com (Julie M. Baker) — Mon, 17 Feb 2020 18:58:00 +0000

I am writing almost every single day, but not here.

I am telling stories a few times a month but, usually, not about my MS.

I am taking my second memoir class at Grub Street this year and I am committed to writing my memoir. But not the one I started with this blog.

I often forget about my MS. I'm not in denial. I know I wasn't miraculously cured.

I am a writer and I'm realizing that I can work on multiple projects at once. I participated in National Novel Writing Month (NaNoWriMo) last November. I develop stories and essays and had my turn at fiction, too, so why not blog regularly, as well.

So, I hope you'll be hearing from me a lot more.

Goodbye, Mom

noreply@blogger.com (Julie M. Baker) — Mon, 01 Apr 2019 01:29:00 +0000

I was asked to write my mother's obituary. This is kind of miraculous because we were estranged for 30 years. We only reconciled shortly before she was diagnosed with terminal brain cancer and I helped care for her in the weeks before she died. That process was incredibly painful and incredibly healing. Writing this was healing, too. There will be many more stories about my mom and me, but this is what I'm capable of sharing now.

Sharen Seedman Baker passed away peacefully in her Hartford home on March 28. At 77-years young, she left the world too soon, just 50 days after receiving a diagnosis of glioblastoma. But she was ready, reminding her devastated family that “Even the very hairs of your head are all numbered. Fear not therefore.” (Luke 12:7) Sharen died the way she lived--on her own terms, with hospice care in her beloved Armsmear apartment, surrounded by her family, friends, books, and art.

Sharen was the daughter of the late Willard Seedman and Nellie McGann. After graduating from St. Joseph’s College and the University of Connecticut, she worked as a special education teacher in Connecticut, Wisconsin, Nevada, and California. She was a lifelong learner, a member of MENSA, a Reiki master, a painter, a social justice champion, and a spiritual seeker. Sharen was a long-time member of Grace Episcopal Church and sang in the choir there. She also studied Sufism for many years and meditated daily. Sharen loved travel, visiting every continent and participating in medical missions in Africa and South America.

She is survived by her sister, Kim Orthner (Walt); her brother, Bill Seedman (Shannon); her brother, Paul McGann; and her four children--John Baker (Gay), Julie Baker, Laurie St. Laurent (Norman), and Tom Savage (Elizabeth). She was “Nani” to seven grandchildren--Emily St. Laurent, Ruby Baker-Poveromo, Christian Savage, Madeline St. Laurent, Daniel Savage, Zane Baker-Poveromo, and Tatiana Savage. She’ll also be missed by her cousins, nieces, nephews, and countless friends and neighbors.

Calling hours are Friday, April 5 from 4:00pm - 6:00pm at Brooklawn Funeral Home, 511 Brook Street, Rocky HIll. Funeral Services will be held at 10:30am on Saturday, April 6 at Grace Episcopal Church, 55 New Park Avenue, Hartford.

“Out beyond ideas of wrongdoing and rightdoing there is a field. I’ll meet you there.” ~Rumi

Checking in: My Memoir, My Pause, My Storytelling

noreply@blogger.com (Julie M. Baker) — Tue, 23 May 2017 00:21:00 +0000

I just applied for a scholarship for Grub Street's Master Memoir workshop so I can finish this mother once and for all. The mother in question is my book, Maybe I'm Just Lazy: One Woman's Journey Through MS and Life. According to the Multiple Sclerosis Foundation, more than 400,000 people in the United States and about 2.5 million people around the world have MS. About 200 new cases are diagnosed each week in the United States. I'd say that's an audience.

For those of you who don't know, my high-tech marketing job was making me sick so I quit my 20-year career in December and took a minimum wage job as a barista at a coffee shop a 3-minute walk from my house. It was either that or a mental hospital and maybe colon surgery. That''s a whole other book and a whole other blog which is not yet public. My working title is either The Power of the Pause or Operation Pause.

I'm also doing a ton of live storytelling these days (The Moth in Boston, South Shore Story Slams at Doyles, Massmouth, Now Listen Here, and random other story slams). Also working on setting up a blog for that to generate some paid gigs as a storyteller for kids and/or a storytelling teacher.

Just checking in. I still have MS and MS still doesn't have me.

Yoga

noreply@blogger.com (Julie M. Baker) — Fri, 05 Feb 2016 04:32:00 +0000

My new way to start and end the day is with yoga. Ok...full disclosure...it's only been two days and each session is only 20-minutes long, but all good habits have to start somewhere and I figure writing it here will increase my chances of sticking with it.

Shortly after I was diagnosed with MS, my neurologist at the time (the second of four, I believe) suggested I practice yoga to maintain my balance. I wish I had listened, but it's never too late. I have done yoga on and off over the years, but never on a daily basis, until now!

I've actually done yoga in some pretty cool places:

In the atrium of the Museum of Fine Arts ("Face the Chihuly sculpture in your warrior pose")


Morning Yoga on the dock at Ponkapaug Pond in the Blue Hills

And, now....in my living room with Rodney Yee's AM/PM Yoga for Beginners.

Namaste.

My Blog, My Book, My MS, My Pony, My Case Manager, and My Bravery

noreply@blogger.com (Julie M. Baker) — Sat, 16 Jan 2016 16:25:00 +0000

I'm tired of making proclamations and commitments about blogging more often. So I won't. I'm here now.

I have a lot of random tidbits to share about still having MS. I think about and start writing individual essays about MS-related stuff all the time, but my perfectionism keeps me from finishing and posting them. So here it is. My brain dump. My list of blog topics, if you will, that may or may not turn into individual posts.

My Book
My New Year's resolution for 2016 is to finish my book. My original idea was to write Maybe I'm Just Lazy: One Woman's Journey Through MS and Life as a journal of my first year living with the disease. I was on track after I was asked to write an opinion piece for Lola, the now-defunct, free Boston Globe magazine. I was energized and motivated and felt like nothing could stand in my way. I was going to be on Oprah, I'd have a story on This American Life, and I'd become a regular on the Moth. Well, that piece was published more than eight years ago. So, what happened? I could list a whole bunch of practical, logistical excuses about single parenthood, working full-time, travel, etc, but I don't think any of them are really true. It's insecurity...about my idea, my writing talent, and the uniqueness of my voice. Do I have a good story to tell? Am I able to write it well and in an entertaining and authentic way that people will want to read? In other words, am I good enough?

I'm done with that crap. I made the mistake of listening to those voices. Life is too short. I'm inspired by words. Here are some quotes I'm using to help me keep my resolution and finish my book this year.

"We are just going to take this bird by bird. But we are going to finish this one small assignment." --Anne Lamott (To me, this means I need to break the project into manageable chunks. Not even chapters, but individual essays I want to include in the book. One DRAFT essay a week to start. I'm starting with my story of waking up nearly blind in one eye which led to my diagnosis with MS three days later.)

"Trust yourself. Create the kind of self that you will be happy to live with all your life. Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement." --Golda Meir

“There is no greater agony than bearing an untold story inside you.” --Maya Angelou

“If there's a book that you want to read, but it hasn't been written yet, then you must write it.” --Toni Morrison

“You can't wait for inspiration. You have to go after it with a club.” --Jack London

“And by the way, everything in life is writable about if you have the outgoing guts to do it, and the imagination to improvise. The worst enemy to creativity is self-doubt.” --Sylvia Plath

“The only way you can write the truth is to assume that what you set down will never be read. Not by any other person, and not even by yourself at some later date. Otherwise you begin excusing yourself. You must see the writing as emerging like a long scroll of ink from the index finger of your right hand; you must see your left hand erasing it.” --Margaret Atwood (And when it's time to show your writing to someone, choose very carefully who that reader will be. The wrong reader's feedback has a way of fanning the flame of that insecurity. I'm thinking about a writer's group of supportive, fellow writers who are honest AND supportive.)

"For me, and most of the other writers I know, writing is not rapturous. In fact, the only way I can get anything written at all is to write really, really shitty first drafts." --Anne Lamott

"Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy." --Dale Carnegie

My MS
So, then there's the MS itself. My book is about having and living with Multiple Sclerosis, a chronic (but definitely not fatal) neurological disease. I am one of the lucky ones. Most of the time, I am symptom-free and the nerve damage I experienced at the onset of my disease has been pretty stable. I was diagnosed in 2007 after an MRI and a neuro-ophthalmologist determined that MS was the cause of my sudden vision loss. Apparently, the disease attacked the protective myelin coating that covered my optic nerves and there was some damage when the nerves were exposed. It's mostly stable and I've been able to get used to my visual impairment. I generally enjoy seeing the world through my wonky eyes. It's an endless source of amusement for my friends and for me when my brain gets it wrong in determining what I'm seeing. An unfamiliar wooden structure in the middle of a cranberry bog on Cape Cod, for instance, becomes a blue, square cow, even though I know there is no such thing. I also discovered that some of my optic nerve issues were caused by active inflammation and that eliminating gluten and dairy and limiting sugar (always a battle for me) reduces the inflammation and improves my vision. Kind of incredible but true. Swear to God. I used to see blurry black and white shapes in my right eye and thought I must be imagining things when I started to see color and was able to distinguish known objects.My neuro-ophthalmologist has confirmed that my vision has improved slightly.

But I still have MS. A recent exacerbation reminded me that my disease is alive and well and I can't ignore it--mentally, emotionally, or spiritually. Even if I am taking my prescriptions, getting enough sleep, exercising, etc., relapses can happen and, if I'm not in optimal mental, emotional and spiritual condition, it can knock me on my ass. I can fall into a hole of self pity where I can't even stand myself. My theme song changes from Beautiful to Loser. Writing about my MS saved me in the beginning. It allowed me to "change the things I can," the really important line for me in the Serenity Prayer. And I need to keep on doing that, no matter what.

My Pony
I've written here about what I fondly and incorrectly refer to as seeing-eye ponies. When I saw this Amazon Prime commercial, it reminded me of how much the existence of these miniature horses made me smile as I was facing increased vision loss. I'm lucky. Some people have to work really hard to find the funny but it kind of comes to me naturally...when I remember to look for it.

My Case Manager
I firmly believe that everyone diagnosed with MS (or any chronic illness, for that matter) should immediately be assigned a personal case manager. "Hi Julie. You have MS and this is Fiona, your case manager. She will communicate with you in the manner of your choosing--email, phone, text--to manage prescriptions, appointments, tests, symptom and medical history, etc." In some cases, it might just be a reminder but, if you wish, and perhaps for an extra fee, your case manager will actually make the appointments and the phone calls for you. If I had a ton of spare time I would prioritize this as a focus for my activist nature. I think that relapses would diminish and quality of life would improve dramatically if we had case managers. We are all, presumably good at what we do. I am a mom (who sucks at it some days, but I have 16 1/2 years of experience in the field), a writer, and a marketing professional. That's my skill set. Managing a chronic illness is not one of my talents so why should I suddenly have to get good at it just because I happened to be diagnosed with a chronic illness?

My Bravery
Let's end this verbose post with a song. I usually hate when people tell me "I'm brave" about having MS. This song and its amazing music video make me feel better...much better...about that word. Be brave, y'all.

MS on TV

noreply@blogger.com (Julie M. Baker) — Tue, 20 Jan 2015 02:56:00 +0000

Last night, my 11-year old son and I watched Guy's Grocery Games--a Food Network cooking competition show where families run through a grocery store then cook meals with challenges like "canned food only." (Don't judge me. Everyone has embarrassing TV viewing and mine could be way worse....he hem...Housewives franchise, anyone?)

Anyway, when one of the contestants was asked what he would do with his winnings, he said he would help his mother who was disabled due to Multiple Sclerosis. Then a picture popped up showing a woman slumping in a wheelchair. I took the opportunity to remind my son (for the umpteenth time) that "20 years after diagnosis, about 1/3 of people who receive no treatment may require a wheelchair or other assistive device"...which means that 2/3 won't need a wheelchair and those numbers will be even better for those that take disease modifying drugs.

I started thinking about how often I hear "MS" on TV. Lest you think we are a household of couch potatoes, you should know that, although I have been known to have marathon viewing of Showtime series and my teenager watches way too many shows about little people, there are days when the television isn't even turned on...much to the dismay of my children.

I used to watch the medical drama program House on a regular basis. More times than not, Dr. House and his team of diagnosticians had to rule out Multiple Sclerosis when they were trying to diagnose a mysterious paralysis. I don't drink anymore but I always thought it would be a great drinking game to do a shot every time someone mentioned MS.

Remember West Wing? The show made headlines when viewers learned that President Jeb Bartlett had a medical secret. Yup, you guess it: MS. Viewers learned a lot about relapsing and remitting Multiple Sclerosis including symptoms that came and went and injectable disease modifying medication.

According to the National MS Society, an estimated 2.3 million people have MS. So, I guess I shouldn't be surprised I keep coming across so many characters on TV who have or may have MS. And then there's all the real-live famous folks: David Lander (aka, Squiggy); Richard Pryor (RIP); Montel Williams; Teri Garr; Jack Osbourne; Annette Funicello (RIP); Richard Cohen; Tamia; Clay Walker; Ann Romney; Kelly Sutton and Trevor Bayne (NASCAR); Joan Didion; Alan and David Osmond; Josh Harding (NHL); Chris Wright (NBA); and, according trashy tabloid sites that came up on a Google search for "celebrities with MS," even one of those Housewives may or may not have MS!

They're in good company.

Remember Me?

noreply@blogger.com (Julie M. Baker) — Fri, 16 Jan 2015 22:00:00 +0000

I haven't blogged in a really long time. I can fill this page with excuses about how I've been parenting, working, volunteering, having fun with friends, traveling, and falling in love, or I can commit to myself (and since it's public, to all of YOU) that that is going to change...right now.

I spoke about having MS and low vision at the Perkins School for the Blind last night for a launch party of a friend's new company--Visual Vitality. (If you want to learn more, visit their site at VisualVitality.org).

Telling my story and talking to people afterward has given me a desperately needed kick in the butt to re-devote myself to this blog and my book.

I was given 5 minutes to speak and I wanted to make sure I didn't ramble so I wrote some stuff down ahead of time. This is, more or less, what I said:

I’m thrilled to be here for the launch of Visual Vitality. My friend, June asked me to speak today as a representative of people with invisible disabilities.

So, here’s my story: I was just going along, living my life as a fully abled person, not really cognoscente of that fact that everything could change at the drop of a hat until…well…until everything changed. One Wednesday morning in August of 2007, I woke up nearly blind in one eye. I assumed it was pink eye or the result of something equally innocuous. It took three days, a dozen specialists, and hundreds of thousands of dollars in tests later (thank God I lived in Boston and had health insurance) to learn the cause of my sudden vision loss. After hours going back and forth between MGH and the Mass Eye and Ear Emergency Room, Dr. Kenny Chang, pulled me into a private room to give me a diagnosis. Now I’ve watched enough Gray’s Anatomy to know it wasn’t good news. They can tell you about negative results in the hall. And I was right. I had MS--Multiple Sclerosis.

Until that day—September 1, 2007—I knew almost nothing about MS. I thought everyone with the disease was in a wheelchair or would be soon. I didn’t know that MS could affect any part of the central nervous system. For me, it was and is my optic nerves. My vision deteriorated still more and, before they were able to stop the progression, the damage had been done. You see, MS attacks the myelin coating over our nerves, I think of it like a big ugly rat eating the plastic cover on an electric wire. When the nerve is exposed, there can be permanent damage. For some, it’s the spine (hence the wheelchair) and for others, it’s the optic nerves. I once heard that if you put a hundred people with MS in a room, they would have 100 different sets of symptoms.

In the last 7+ years, I’ve learned a lot about Multiple Sclerosis and living with low vision, including that people don’t always know. As I often say to people who tell me I don’t look like I have MS, it’s not a disease of the face. I no longer drive, I read large print, and sometimes I have balance issues and trouble navigating unfamiliar or crowded spaces. But I don’t wear a sign or use a cane. And if I don’t need a cane, should I have to use one for people to make reasonable accommodations for my disability?

When I go into a doctor’s office and they hand me a stack of forms to fill out, I always ask them if they are available in large print. They usually aren’t. Most medical staff are more than happy to read the forms to me but that’s not what I asked for. I learned how to read at 4 years old and I want to read them on my own. And I should be able to. The technology exists to make that possible for me. Why not hand me an iPad where I can make the forms the size I need or listen to an audio recording of the medication side effects myself? What if doctor’s offices and other businesses could be trained about how to provide this kind of equal access to people with disabilities?

I am not bitter and I do not feel sorry for myself. I believe that MS is a gift in my life. I’ve learned so much about myself and the world, I’ve met amazing people in the MS and other disability communities, and I believe I am a better person because of my MS.

People with disabilities—minor or major—want to fully participate in life. Sometimes we need accommodations to make that possible. Visual Vitality is going to help everyone get the equal access promised by law.

Thank you very much and congratulations Visual Vitality. You’re doing important work.

Watch this space. Lazy Julie is BACK.

MS Challenge Walk Training Pics

noreply@blogger.com (Julie M. Baker) — Fri, 30 Aug 2013 02:40:00 +0000

I have been logging many, many miles in my purple sneakers training for the MS Challenge Walk. Ruby has been walking, too, but she also joined her high school cross country team so she is doing more running than walking lately. I sincerely hope she doesn't break into a run on the Challenge Walk. If she does, she is on her own since I have determined that running is not for me. I walk pretty fast (usually a 15-minute mile) but I only run if the train is leaving or someone is chasing me.

Here are some pics from various training walks.

Beach walking

Dusky sky on evening walk

Sunset on a local walk

Walking at the Ponkapaug Bog was challenging and beautiful.


Ducks at Turner's Pond


this bench at Turner's Pond always reminds me of my Dad., not sure why but I love passing it when walking about the Pond.

I love seeing the light change throughout the day at places where I walk regularly


I have a love/hate relationship with walking at dusk. The light is BEAUTIFUL but it means it's getting darker and I may have a hard time seeing on the way back.

Kites on Nahant Beach.

Cattails at Ponkapaug

Beauty at the Ponkapaug Bog on a walk with The Librarian

One of my epic local, getting lost with the Google navigator woman telling me to take U-turns.

The kids and I after a training walk where Z road his bike, I power walked, and Ruby alternated between keeping up with me and whining about how I was too fast. Please remember, this is a girl who RUNS.

I love walking on the bike path. I NEVER, EVER get lost. :-)

Dorchester mural


Turner's Pond. I love meeting Helene and Rebecca for early, early, early walks.


I always say hi to the office park swans on my lunchtime walks.

MS Challenge Walk Training in the Woods

noreply@blogger.com (Julie M. Baker) — Tue, 13 Aug 2013 01:40:00 +0000

I did an awesome MS Challenge Walk training hike/walk on Saturday. Diane the Librarian took me on on one trail I knew and a few I didn't know in the Blue Hills. Do you want to know a secret about hiking? It's basically walking in the woods. According to my cell phone pedometer, I walked a total of...drum roll, please...

The Boardwalk in the Ponkapaug Bog was gorgeous, we walked through moss, honeysuckle, blueberries growing overhead. It smelled fantastic and the wobbling boards made it exhausting walking.

There's isn't a bad view in the Blue Hills. I feel incredibly blessed to live so close to such a beautiful natural setting.

I love taking photos of reflections.

The bog boardwalk went on forever. We wondered about who maintains the boards. I pictured volunteer carpenters lugging boards out to the bog.

Cattails growing by the Ponkapaug Golf Course. The Librarian was not amused when I threatened to yell "Four" (or is it "Fore?" at the golfers.

The boards on the bog boardwalk were very wobbling. I understood why Zane came home with wet shoes after walking there with a bunch of kids from the AMC Camp.

Waterlillies and other nameless, but beautiful flowers growing wild in, on, and around Ponkapaug Pond.

We started and ended our hike at an Elementary School parking lot at the edge of the Blue Hills. I made Diane pose for this picture because I was exhausted by the end of our walk and wanted to rest for a minute. We were definitely idling.

The Ride to the Bracelets

noreply@blogger.com (Julie M. Baker) — Fri, 09 Aug 2013 03:17:00 +0000

I love my job but I have a very long and sometimes difficult commute to and from work everyday on The Ride, which is the Boston-area public transportation service for people with disabilities (a.k.a. The Short Bus). I started Tweeting to pass the time today. If you're on Twitter and are interested in reading my Tweets from The Ride follow me: @TheRideTales. Today was kind of boring, but I swear it's not always that way! I've been entertaining my Facebook friends with my crazy stories for a couple years. Maybe The Ride heard I was tweeting about them and they shaped up their act today. The power of social media!

Although my commute home was only an hour and 20 minutes today (it's been as long as 2 1/2 hours), I came home kind of worn out. I was thrilled to walk in the door and find a package addressed to me! Who doesn't like presents in the mail? Inside today's package was a plethora of "Join the Movement" bracelets from Aileen at the Greater New England Chapter of The MS Society. I plan to sell them for $1 each at our 8/31 Yard Sale to benefit the MS Challenge Walk.

If you live in my area, and want to drop off stuff for us to sell at the yard sale, drop me a line! 100% of the proceeds will go to our fundraising goal for Fish Out of Water, our MS Challenge Walk team.

Good Orange Morning!

noreply@blogger.com (Julie M. Baker) — Wed, 07 Aug 2013 10:00:00 +0000

Orange is the color of MS Awareness. Ruby and I will be getting orange mani/pedis for the MS Challenge Walk in just 31 days.

Here are some orange tunes to get you in the mood:

Have a great day!

MS Challenge Walk Fundraising Progress

noreply@blogger.com (Julie M. Baker) — Tue, 06 Aug 2013 22:00:00 +0000

Ruby and I are hard at work training and fundraising for the MS Challenge Walk on Cape Cod, September 7-8. Thanks to the generosity of our friends and family, our Fish Out of Water team has reached the 20% milestone on the way toward our goal of raising $3000 for the MS Society!

Have you made your contribution yet? Remember, no donation is too small and, if you have no money to spare, not to worry. We are also happy to receive your moral support in comments, calls, and messages. And, local friends can contact me about dropping off their hand-me-downs and cast-offs for our yard sale to benefit the MS Challenge Walk, scheduled for August 31.

These Feet Were Made for Walking the MS Challenge Walk!

noreply@blogger.com (Julie M. Baker) — Tue, 30 Jul 2013 02:53:00 +0000

My beautiful daughter Ruby and I, have decided (about six weeks before the event) that we are forming a team to do Walk MS, The Cape Cod Challenge Walk to raise money and awareness for the MS Society.

As some of you know, I crewed for the event last year. Well, I have decided that I need to get out there and form a few blisters of my own and Ruby has graciously volunteered to join me. Since I know you are incredibly impressed and anxious to learn how you can join the fun, here are your options to participate and/or support the "Fish Out of Water" MS Challenge Walk Team:

#1 Walk with Ruby and me! Each walker has a $1500 fundraising commitment which we will help you reach. You walk 50 miles in 3 days with a ton of support from the MS Society. It's September 6 - 8, 2013 on beautiful Cape Cod.

#2 Crew for the weekend event. You pay a $75 registration fee. You still get our team T-shirt and you get to stay with us at the amazing Cape Cod Sea Camps. You will be put to work to support the walkers, but I did it last year and it's a lot of fun.

#3 Become a 1-day Volunteer for either Saturday or Sunday to help out where needed. Again, you will still get our team T-shirt and my gratitude.

#4 Sponsor us or attend one of our FUNdraising events!

Watch this space for details and a pledge link as soon as I pay my registration fee or email me with questions about how you can join the team!

A Little Bit of My Kind World

noreply@blogger.com (Julie M. Baker) — Fri, 01 Feb 2013 03:53:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Sun, 06 Jan 2013 02:28:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Sun, 04 Nov 2012 20:31:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Fri, 12 Oct 2012 23:43:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Thu, 04 Oct 2012 02:46:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Wed, 03 Oct 2012 01:41:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Mon, 01 Oct 2012 23:00:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Sun, 30 Sep 2012 23:50:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Tue, 06 Mar 2012 04:03:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Thu, 16 Feb 2012 03:20:00 +0000

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

noreply@blogger.com (Julie M. Baker) — Wed, 08 Feb 2012 04:15:00 +0000

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.

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!

Money Matters

noreply@blogger.com (Julie M. Baker) — Mon, 06 Feb 2012 00:34:00 +0000

I am not what you would call financially mature. I'm trying to be, but I'm kind of a late starter.

I got my first checking account at 18 and never learned to balance it. As a result, I quickly learned how something paper that represents something paper can actually bounce and how, although that may sound fun, it's not. I got my first credit cards at the same age and watched each and every one of them get cut up at cash registers by the time I was 22. That was definitely not fun.

I moved in with my ex when I was only 24 and, since he was a lot better at managing money than me, I let him. Don't get me wrong, I still paid for half of everything even when I made less than half of what he made. That was our arrangement..until several months after our daughter was born when I refused to keep splitting the cost of diapers 50/50. And, no, I'm not exaggerating.

With the help of his bullying me to pay bills on time, I managed to reestablish my credit, which I then destroyed all over again when we parted. After we split up seven plus years ago, I suddenly had to pay bills, establish and stick to a budget (or not and suffer the consequences), and balance a checkbook (or not, and suffer the consequences). I suffered a lot of consequences including late fees, bank charges, canceled policies, and the embarrassment of bounced checks and calls from creditors.

I can't blame my parents for not teaching me about money. I'm an adult now and my dad, who is the only parent I've had in my life for 20+ years, is now gone. I don't think it's part of a dead parent's duties to teach his 40-something kid about managing money from the beyond, do you? Nor can I blame my ex for enabling my immaturity with money matters and taking over finances. We're no longer married and my finances are my responsibility.

Nope. I will no longer play the blame game because I never win. Instead, I will put on my big girl shoes and be a financial grown-up...or fake it until I make it. To that end, I've created a budget with my rudimentary Excel knowledge and, for the most part, I'm sticking to it. I'm not perfect but it's not as bad as it used to be. I've occasionally run out of money between paychecks, but I realize it (usually before checks bounce) and immediately stop spending money I don't have. I have been known to cancel babysitters for nights out and take my last $50 to the grocery store and make my Lithuanian great-grandmother proud with my frugal food planning for a solid week until the next paycheck arrives. That may sound like no big deal, but trust me, it's huge for me. I don't expect pats on the back but I do give myself high-fives for finally doing what I should have been doing all along.

I also believe that it's my job, while they are young, to help my kids learn about how much things cost and how to make good choices with money. For starters, I give them allowance for doing certain chores and, they have to put a portion of that allowance into long-term savings, and donate a portion to charity. This doesn't always go over well ("Why can't the charity be ME?" and "But I want to spend the money NOW!"), but I stick to my guns. When they ask to buy something that is not a necessity and it's not Christmas or birthday-time, I let them know how much it costs and suggest they use their own money to buy it. I don't want them to believe that money grows on trees that they do not plant or water.

I know that I am very, very fortunate. I have health insurance, I earn a living wage, I have a roof over my head, and there is food in the cupboards. I sometimes worry about the future with money. What if I get sick and can't work? Will I ever be able to retire? I used to have a retirement account but I took most off it out to fend off creditors after my divorce and paid a fortune in tax penalties for the temporary bandaid.

But you know what? Just for today, I am doing what I'm supposed to be doing. Just for today, I'm healthy and can work full-time at a job that pays the bills. Just for today, I know that if I trust myself and the Universe, all will be well and I will have what I need when I need it.

How about you? Do you manage money well? Do you worry about future finances?