Maybe I'm Just Lazy: One Woman's Journey Through MS and Life: October 2012

Friday, October 12, 2012

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

Wednesday, October 03, 2012

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.

Tuesday, October 02, 2012

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:

Monday, October 01, 2012

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.

MS is Lazy!

I just read this on an MS support group site and it made me feel better about feeling "lazy."

When the myelin covering on the nerves is lost/disappears/whatever it does, the nerves don't conduct brain messages nearly as effectively. It's kind of like the nerves have to find new pathways for the messages from the brain. So the messages are much slower in reaching their destination and it takes more energy, trying to find the right paths. This made a lot of sense to me and helped my not feel so 'lazy'.

The Spoon Story

I would love to give the proper attribution for this story but I have no idea where I found it! I think it may have been posted to an MS community site.

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about MS. She came to doctors with me and she saw me walk with a cane. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.

I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have MS”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.

So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with, which you wont know until you wake up. To answer your question we’ll start your day with twelve. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out the12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon.

I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If my shoulders and back hurt I wont be able to put on a bra. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons.

I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a virus comes, or a treatment reaction, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so dizzy, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it.

I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared” It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.

I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons."

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say that she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

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

Friday, October 12, 2012

MS Society Fashion Plates Luncheon & Fashion Show