Sunday, March 29, 2009

A Milestone

So. This is my 100th post. I have been racking my brain for something witty, poignant, wise and something that will finally get those folks at the We Publish Bestsellers And Will Make You Rich And Famous Forever Publishing House to notice me and make me rich and famous forever. Or maybe to get Oprah to notice my pathetic yet brave existence and give me lots of cool free stuff for being a pathetic yet brave inspiration. Sniff.

Alas. Nothing.

Instead I had a week where Dr. Wonderful told me I probably had to have shoulder surgery again to fix the first shoulder surgery (although he did look wonderful telling me :)).

I had to have a test that involved sticking a six inch long needle into my shoulder joint.

Dr. H. told me he thinks I have a form of MS that is really really bad and will cause me to be blind and paralyzed. Oh, and dead. I have to have a blood test for this possible diagnosis and have been dragging my feet, being of the Ignorance Is Bliss school of thought.

I had my monthly Tysabri infusion on Wednesday, one stick for blood work, two sticks to start an IV (missed on the first; oops sorry about that).

Had an MRI of the brain to track MS progression yesterday. Another stick for IV contrast. Have an MRI of the spine tomorrow. Another stick for IV contrast. Then…I think that’s it for bodily assaults for at least the next two weeks.

My parent’s continue to be in crisis and I continue to be the family pariah amongst my siblings who rejected out of hand my plan for a geriatric social worker to assist us.

Consequences of being out of work for almost a year continue to dog me.

I am still fat.

However, (in my life there is always a ‘however’, otherwise I wouldn’t still be here) I had a perfect cup of tea this morning while I watched the rain.

I have friends who endlessly affirm me and their love for me.

I have children who, despite our issues, I adore. And who, I suspect, have some affection for me.

I have this incredible medium of the Internet, where I have made so many new friends and have been exposed to such fascinating lives.

I sit cross legged in bed with the newspaper, cozy on this gloomy day under a favorite soft, worn patchwork quilt. My knitting is piled beside me, along with skeins of gorgeous hand spun wool I found on Etsy. My bedroom is exactly how I want it, old oak dressers, floral linens, buttery yellow walls, books everywhere. My little dog snuggles against me and heaves an enormously contented sigh.

Life is good.


Friday, March 20, 2009

Open Mouth, Insert Foot

I can totally relate to the President making what seemed to be a harmless little quip but, in retrospect, a retrospect of approximately two milliseconds, one realizes that was an oh-so-wrong thing to say.

My verbal missteps are legion. Usually they take the form of me making a snide, yet hilarious (to me), statement to someone about someone else’s taste or behavior. And I belatedly learn that the person I am making the remark to is the cousin/sister/brother/wife/take-your-pick of the person I am making the remark about.

When these inevitable ignominious events occur, I usually call my friend Christine to bemoan my latest gaffe. She listens, there is dead silence for about thirty seconds and then I hear Christine’s voice sadly intone “You never learn, do you?”

The answer to that, Christine, would be ‘no’. No, I do not ever learn. I don’t think I will ever learn to keep my mouth shut.

Especially when I am stressed.

Here is one example.

I had a job interview last year. It was when I couldn't drive because of my broken shoulder, but I never stopped looking because I had been out of work for six months at that point. My Dad generously drove me. When I drove anywhere with him, I usually kept my eyes closed so I would be unaware of my imminent death. But I was grateful all the same.

We get to where I am interviewing, a think tank outside of Princeton. I get out of the car AND SO DOES MY DAD!!! AGGHH!! I figured he was going to go get a cup of coffee or something and come back for me, but NOOOO, he comes into the office building with me and sits down in one of the lobby armchairs. What was I going to say, ‘Dad, go away’?!? This sweet man was driving me everywhere. I started praying he wouldn’t be sleeping when I came back down.

One of the interview team comes to get me and I have to introduce him. "Um, this is my father..." I am 54 years old. Oh my God, it was mortifying.

But it got worse.

I joke a lot when I am nervous. It is a VERY VERY bad trait, because you can inadvertently say really inappropriate things to people who are interviewing you!

My interview is being conducted by the charming young man who had come to get me and a very personable older woman. The interview is going great. They love my background. After discussing my professional credentials, the woman asks me the classic, ‘tell me one of your weak points.’ It is one I ask as well when I am hiring and the response actually does tell a lot about the candidate. Do they use it to make themselves shine, do they tell the unfortunate truth or do they look like a deer caught in the headlights?

This job was a public relations position, so I decide to promote my social side. And I say to her, "Well one of my weak points is that I get so interested in people, we could go on and on and I can lose track of time. I love hearing people's stories, even from the very beginning, you know 'I was born a poor black child...'" ha ha ha

Yep, to my own horror, I ACTUALLY SAID THAT!!!

Did I mention the young man interviewing me was black? And from the appalled look on his face, was not a huge Steve Martin fan. He probably was too young to get the reference. But the woman cracked up. She cracked up in an ‘Oh you poor thing did you just completely blow it but thanks because this will give me a story to tell forever’ kind of way.

I could not get out of there fast enough. On the plus side, Dad was awake and oriented when I got back to the lobby. Needless to say, I did not get the job.

The lesson here? Be oh so grateful you are not me.


Tuesday, March 17, 2009

St. Patrick's Day

My grandmother, Kathleen Agnes Daly Bennett, immigrated to the United States from Ireland in 1923. She was 18 years old. In the picture to the above, taken around 1909, she is the little girl in the front center, with the two bows in her hair. They called her Katie.

She came alone on a freighter, was processed through Ellis Island and was met by her older sister May, who had already been here for several years. My grandmother described the trip as an absolute misery but could not really recall much of Ellis Island, except that she saw people with black skin, from Africa, for the first time.

She had grown up in a mining village in the west of Ireland, in a genuine thatched cottage. She dispelled any romantic images of charm by pointing out living things fell out of the thatch. Eeeew. That tiny house, where 12 people once lived, is now a ruin.

She met my grandfather a few years after coming here and they were married in 1930. His family had been comfortably well off, but my great grandfather’s business failed in the Depression. So my grandfather got the most dependable job he could and became a New York City policeman.

They had six children, losing their first little girl when she was five months old. They worked hard their whole lives to raise their family. And when we grandchildren came along, they extended that love and care to us.

St. Patrick’s Day was special in our family, but primarily as a holy day, in honor of a saint. My grandfather always worked the parade and as my mother and aunts and uncle grew up, there was usually one or another actually in the parade, it was a tradition that most Manhattan Catholic schools took part.

As time went on and we all gradually moved to the suburbs, the focus changed. No one was in the parade any more, but my grandmother loved to watch it on television. She had a great, dry wit. She would joke she wanted to see how inebriated Jack McCarthy would be by the end of the parade and if he’d still be standing.

St. Patrick’s Day eventually became Grandma’s day. It was the day we all, my aunts, my cousins, my siblings, made a point of contacting her, sending her flowers, calling her to let her know how much she meant to us. We did not talk much about the sacrifices she made by coming here. She never saw her mother again, as my great grandmother died soon after she left. She only saw her father once again before he died. Despite her losses, we celebrated each year all that she had modeled for us throughout our lives, love, strength, a reverence for education, a sense of humor, dignity and graciousness.

My grandmother died, a little more than a year after my grandfather, on August 6, 2000. She was 96, but even that many years were not enough for me. I think about her and miss her every single day.

Here is part of the reading I was privileged to give at her funeral, from Proverbs:

Strength and dignity are her clothing,
and she laughs at the time to come.
She opens her mouth with wisdom,
and the teaching of kindness is on her tongue.
She looks well to the ways of her household,
and does not eat the bread of idleness.
Her children rise up and call her blessed;
her husband also, and he praises her:
“Many women have done excellently,
but you surpass them all.”
Charm is deceitful, and beauty is vain,
but a woman who fears the LORD is to be praised.

As is custom, I bowed to the altar when I was done. But then I turned and deeply bowed to my grandmother’s casket, to honor a woman who has left me an endless legacy of grace and courage and love.

Happy St. Patrick’s Day, my beloved Grandmother.


Sunday, March 15, 2009


I feel absolutely fine today. Like a normal human being.

It did not take me ten minutes to get out of bed while I laboriously unkinked my spastic limbs and found my balance. That was my first clue that something was…right. I am not groaning (openly or silently) with every move. Nothing overtly hurts, dizziness is not causing reverberations throughout my body with every movement, I can get up and out of a chair without Herculean effort. I feel like…dare I say it... a well person!

I am giddy with the sheer bliss of it. That I am living a day without being reminded every second I am really, really sick. And yet I cannot fully enjoy it because I keep wondering when is it going to stop and I will go back to what I was just yesterday.

Perhaps I was abducted by aliens during the night? Not to be greedy, but while they were at it, couldn’t they have made me thin too?

Saturday, March 14, 2009

This Bites

I have to say at the outset that I hate teeth.

I suppose I like the actual fact of having them. They do lend themselves to things like smiling without causing your companion to recoil in horror and the successful, comfortable consumption of food.

I just hate the fact that you can’t simply brush them several (in my case, several million) times a day and be done with it.

Oh no. Because teeth have an unfortunate habit of doing things such as BREAKING.


I broke a tooth this morning. It is not really visible unless I open wide and show you, which is pretty unlikely. And it doesn’t hurt, thank goodness. Hmmmm, why did the thought ‘for now’ just pop into my head?

But it feels creepy and ragged and worst of all, now I have to go to the dentist. And I have a dental phobia.

I have nothing against dentists per se. I think a lot of them are really nice people. I am so sorry they have the highest suicide rate of any profession. It is just I cannot bear having a stranger stick his fingers in my mouth.

Heck, I don’t want people I DO know sticking their fingers in my mouth.

My most recent dentist, we’ll call her Dr. Mengele, was a horror. I guess not from a capability standpoint, as all the work she did on me still stands. Stands? Lies? I don’t know, none of her stuff has broken.

But she was so MEAN!!! The most distressing thing was that she initially seems really nice. She acts pleasant and tells you what she going to do and how she is going to take care of you. Then you discover…she is evil incarnate.

Free Smiley Face Courtesy of

Once your ass gets slapped in that chair, you’re all hers. The first thing she does is recline the seat ALL THE WAY BACK, so you are practically standing on your head. I don’t know why, but this triggers a panic sensation in me. So I would start to hyperventilate (but NEVER complain!!! I was brought up to allow myself to be subjected to any kind of torment any authority figure is meting out) and I would meekly and pitifully ask if I could be sat up a little. And she would snap “No”.

Free Smiley Face Courtesy of

So my panic would continue until I was half sitting up anyway, unable to breathe. It interrupted her and let me tell you she would get PISSED.

This happened every single visit.

Then, you know how dentists always tell you to put up your hand if they are hurting you? Well, if I put up my hand, she pushed it down and kept working!!

Free Smiley Face Courtesy of

Finally I resorted to being sedated while she did her thing. This is one of her marketing points, that you can have all your work done at once, easy peasy, no pain, no unpleasantness, nothing to be afraid of. I took one pill before I left the house (driven by someone else naturally), and then another when I got there. Problem was, the sedation wasn’t taking. I was supposed to be out like a light but I was still aware of much of what was going on, including pain, and her being mean to me!! She would snap at me if my mouth wasn’t open enough or if I made a sound.

She told me ahead of time I wouldn’t remember anything. Wrong, Nazi girl.

She gave me an extra pill. Still not enough. Then another one. Still not enough. Finally I was begging for nitrous. She told me there would be an extra charge. I moaned I didn’t care. But she refused.

Free Smiley Face Courtesy of

Can we all say ‘nightmare’.

Once the work I paid her for was done I never went back. Every time I sat in the waiting room, I had watched these happy, dazed people stumble out, thanking her profusely, clearly unaware of the torture they had just been subjected to. I wanted to be one of those favored ignoramuses. No such luck. I still have flashbacks.

Although I do have a nice smile.

Big Grin Smiley

So now I have to find a new dentist, which I have been putting off for years a while.

Did I say I hate teeth?

Monday, March 9, 2009

Uncertainty, A Marie Sandwich & Where Do We Go From Here?

“The Sandwich Generation” is a phrase that has barely penetrated my awareness over the years. Whenever I have seen a news article or report about it, I have scarcely skimmed the information. The vaguest conscious thought of “that will never happen to me” has slid through my brain each time.

Funnily enough, a decade ago, when I saw a movie about a woman who had MS (Hilary & Jackie), I thought the same exact thing.

Maybe I should just stop thinking.

The expression “The Sandwich Generation” was coined to describe Baby Boomers who were discovering themselves living with/caring for their aging children at the same time they had to live with/care for their aging parents. People my age are then stuck in the middle, caretakers to two generations, with no energy, money or enthusiasm left for their own lives.

In my case, I never supposed it would affect me because I assumed my children would all be settled by at least their early twenties and be on their own. First mistaken belief. I currently find myself living with two grown daughters, who show no signs of going anywhere else.

And what would I call them now? They are not like roommates, because they don’t help with the bills or the housework. As a matter of fact, when I asked my 21 year old recently if she would help me straighten up because I had a business client coming over, she snapped at me that I shouldn’t expect her to be my ‘slave’. So they are not slaves either.

More’s the pity.

They are not really children anymore because they are bigger than me and have jobs and serious relationships and drive their own cars. But they kind of are like children because they still watch TV all day on their days off, leave dishes and debris all over the house and don’t pay for anything.

I lived alone for about 5 minutes before they both asked to move back in for various reasons. I said ‘of course’. My sister said “ARE YOU OUT OF YOUR FUCKING MIND?” But these are my children. I adore them and would do anything for them. So back they came, with my expectations and boundaries clearly laid out for them.

Now my expectations and boundaries are clearly laid out in the yard, where they landed when the girls tossed them out the window.

So they are not roommates, helpers, slaves or [actual] children. That could leave ‘parasite’, but I don’t want to be mean.

This would make me an open face sandwich so far, which I have been dealing with. I deal with it mostly by wringing my hands and ineffectually whining to them they have to be preparing to find their own places and they really need to help me more, but I deal with it.

The other reason I thought this would never happen to me is I guess I thought my parents were going to be healthy 40 year olds forever. Another example of why I should stop thinking. Because, surprise!! My parents have grown old.

For someone my age, 54, they are still relatively young. My mother is 75 and my father is 76. They have friends their age who travel and are very active. Shoot, I have friends their age who travel and are active. But my parents are not doing well.

My sister took them into New York this week so my mother could have her pacemaker replaced. This is a relatively minor procedure, although a minor procedure to my mother is the same as a heart transplant. I did not expect anything to go wrong, and technically, it didn’t.

But when my sister got home, she called me immediately. Although she ended up making me laugh because she is so funny, she was distraught. She said she felt as though she had just spent the day in the Twilight Zone. I cracked up and said you did, you were with Mommy and Daddy. (sad but true, we still call our parents Mommy and Daddy; my children tease me about this mercilessly).

She said, no, there was something seriously wrong. I won’t go into details, because even though I seem irreverent about my parents, I would never deliberately humiliate them. Let’s just say that their behavior was not usual and it was very concerning. And my sister is not an alarmist.

Ok, ok, she is an alarmist. So am I. But we’re alarmist about things like will we get cancer from non-stick pans. Really serious stuff like this we usually take in stride, I suppose because we’ve both had to deal with so much of it.

My parents live about a half hour away from me, about a half a minute from my sister. I told her I would go over and stay with them until I was sure they were ok, but she did instead. And they were. But we aren’t.

Glimpses of health problems, inappropriate responses and behavior have been noticeable for awhile. But we are not a close knit family that talks about ‘things’. We genteelly skirt around the elephant in the living room until everyone gets used to the smell. And let me tell you, we have a circus full of elephants in our family living room.

My father’s health has been the most concerning. But when I expressed my worry to my mother, she furiously denied anything was wrong and firmly closed the subject. My sister and I have talked about just going to his doctor with what we are seeing, but have not had the nerve, afraid of angering and embarrassing my dad. But now my mother’s health seems precarious too.

What appears to be not too far down the road is the reality that they can no longer live alone.

As I said, as a group, my siblings, parents and I are pretty detached. We are cordial, but not really warm. Never really honest. I am the black sheep. Which is comical considering how ordinary I am. But I am the one who has clearly delineated boundaries as an adult that I do not allow my family to cross. I go my own way, do not acknowledge emotional blackmail, I spend my holidays with people who love me and make me happy rather than people who treat me like the misbehaving Village Idiot.

This makes me scary and dangerous, because I do not play by the Family Rules. Scary and dangerous is translated into our Family Speak as “you know what Marie is like”, accompanied by sighs, eye-rolling and much criticism about what a bad daughter I am. Greatly embroidered half truths, if not bare faced lies, accompany this indictment. They wanted someone compliant and acquiescent. They got someone who challenges every coping strategy they have.

So we do not have what you would call the ideal set up for a calm and sensible discussion about the future. Instead we have denial, suppressed anger and decades of baggage. Fun!!! Sign me up for that family meeting!

If push comes to shove, my house is actually the only one that would be practical for my parents to move to. I have a Craftsman style bungalow, with all the necessities on the first floor. Bungalow is misleading, because it is a big house. And my parents really love my home. It could be manageable.

It might never come to that, but the idea, now planted with my sister and I, is like a wild vine that has sprouted and threatens me with growing out of control. My girls upstairs. My parents downstairs. All wanting things from me I can’t deliver, with docile perfection being at the top of the list. I can imagine having to live with the faces of four people full of expectations and perpetually disappointed in me, sucking my life away.

And that vine just keeps winding around this reluctant sandwich...


...we just have to wait and see where it will lead us all.

A Lovely Gift

One of the blogs I read is Caregiving Daughter. This blog is written by a woman with her own growing family. When her mother became less able to care for herself and developed signs of dementia, this daughter generously moved her mom into her home.

She writes about the struggles but those stories are well balanced with everyday joys and successes involving the whole family. It is a demonstration of love and selflessness told with gentleness, simplicity and humility.

This lovely woman has given me an award!

She says:

This award is to recognize blogs that are about making the best out of difficult situations. When life gives these bloggers lemons, they just add a little sugar, stir it up, and make some great lemonade. Has life got you down? Then stop by these sites for some thirst-quenching lemonade for the soul.

And mine is one of them!! Here is my award:

To be honest, I am a little embarrassed because my motto actually is when life give you lemons, ask for a refund. In my head my illustration would look a little more like this:

But I gratefully accept her kind words and sweet award.

I want to check out the other blogs she cites, so here they are as well. Some I have visited, and they are great. For the others, they must be worth a peek. I believe I am in VERY good company.

Got Quads?

Forever Family

Everyone's Family

Beating ED

My Autism Insights


Moments of My Life

Forever Family

Sunday, March 8, 2009

MS Awareness Week: Nellie’s Wishes

This is the final day of MS Awareness Week. Thank you to those of you who have read my posts and gained some understanding. Thank you to those of you who have shared warm and supportive comments.

I am so blessed to know a myriad of fascinating people who also happen to have Multiple Sclerosis. I have friends literally all over the world, each one smart, funny and brave, coping with their illness in their own unique way. We all have stumbles of self pity and despair, but for the most part I see wisdom and grace as they deal with this shitty hand that life has dealt them.

One of these people I have met relatively recently through my blog. I believe of all the PWMS that I know, she is the one who has knowingly battled it the longest. She is a young 76 and was diagnosed when she was in her thirties.

She has been married, raised four sons and several step children, she has worked and lived a generally full life. She is a wise-cracking spitfire, sharp and sardonic, empathetic and warm.

We live on opposite sides of the country and she is the same age as my father. We have a remarkable number of things in common, besides the whole MS thing. She is one of those people that you meet sometimes and you just click right away with a sense of joy at finding a kindred spirit.

So I asked her, what perspective can you give us after living with the Monster for more than forty years? What are YOUR wishes? This is her response:


Wish the guys would still think I had a sexy walk.
Wish the neighbors didn’t think I drink because
I sometimes stagger.
Wish the kids at school hadn’t asked my kids, ‘what’s wrong with your Mom?’.
Wish I had a paycheck, a job, a way to make money while flat on my back some days.

Wish I had a van, with a lift to take my wheelchair further than the corner store.
Wish I could go to the mall just to window shop, buy some makeup, something cheerful.
Wish I could sit in a restaurant without having my cane either trip someone or fall on the
Wish I had the money for a cab to the doctor’s office when I’m too sick to drive but too well for an ambulance.

Wish I could dress up and wear high heels…feel pretty again.
Wish I could have a nice hair-do instead of one that’s ‘easy to care for’.
Wish I could see well enough to read a magazine or book without seeing double.

Wish I had friends that just popped in to help change the bed or take out the trash occasionally.

Wish the doctor didn’t stare at me like that when I walk down the hallway.
Wish I had the energy for a shower and to get dressed every single day.
Wish I could make a lunch date a week in advance without wondering if I’ll be able to make it that day.
Ditto for any plans for a future date, vacation, a
ppointment, hair cut, movie, etc.

Wish people would let me cry occasionally without feeling they had to ‘fix things’.
Wish eight hours sleep didn’t feel like only two and one-half hours.
Wish spending so much time sitting didn’t ruin my hourglass figure.

Wish people didn’t just stop calling me when I have to often break dates.

Wish my kids didn’t ask me if I’d thought about which Nursing Home I’d like.
Wish my kids didn’t tell me I should move closer to them (or in with them) and lose the few contacts I have.
Wish my wheelchair tires didn’t track in mud.

Wish I didn’t have to stay indoors alone on cold, rainy, or snowy days that last for weeks and weeks.

Wish I didn't worry about what the new meds w
ere doing to the rest of my body.
Wish I wasn't so afraid of what would become of me once I can’t get around at all.
Wish I’d saved more money or had unlimited wealth to hire honest health care workers.
Wish someone would just come and take this all away…it gets much too heavy at times.

Wish I’d known about support groups online and how important they are.
Wish Internet service was at a reduced rate (or
free) to handicapped folks that can’t get around.
Wish electric rates were reduced for those with power chairs and breathing devices that need plugging in each night.
Wish incontinence products were supplied by Medicare.

Wish I could still dance, even with the Wii.
Wish going to the dentist didn’t cause my body to
jerk with spasms.
Wish I could still do my own nails without getting polish all over my fingers.
Wish I could still sew…threading a needle is impossible.

Wish I could still stand at my easel and paint with wild abandon.
Wish I could be with my loved ones when they are taken to the hospital.
Wish I could have sex with reckless glee withou
t fear of peeing the bed.
Wish, when I stumble for words, others wouldn’t look away, then leave as soon as possible.

Wish I could have long discussions without losing the thread of it so quickly.
Wish I didn’t have to write down things IMMEDIATELY after hearing them for fear they are lost forever.
Wish I knew if ever I have the faint aroma of urine.

Wish I knew if I was still lovable.

That is IT. That captures MS, in forty four lines.

Thank you for the gift of your experience Nellie.

And yes, you are, without a doubt, still eminently lovable.

Saturday, March 7, 2009

Pride and Portliness

This is probably going to sound incredibly self indulgent.

Because of muscle spasms I get that can knock me off my feet, wake me up at night and sometimes make it impossible to get out of bed in the morning, I go for a massage about once a week or so.

ACK! I can hear you all now, ‘cry me a river’, ‘you poor thing’, ‘well aren’t you special’, all dripping with sarcasm. But it isn’t like it sounds.

First of all, I go to a chain spa with discounted prices. I am a member, so that reduces the price even more. It is not a fancy place, just a simple set up. I have only been going since I started my new job in July. And, finally, there is never a minute that I don’t fully appreciate how lucky I am to have both the time and the money to do this.

Believe it or not, I don’t even enjoy it that much. It takes time, I have to get naked, it is usually a different therapist each time and everyone is has a different technique. I mean it feels ok, but it is all about relieving the pain for me.

I went tonight and it is a therapist I have never met before. A really sweet young girl. She tells me she read my chart and asks if there is anything special I need. I tell her no, I just can’t have any pressure on my lower back at all. She says, “OK. Do you need a towel for your chest?”

Excuse me??????????

No one has ever asked me this question before, so I am confused and don’t know how to answer. Because I am a mental case, I want to get the answer right. God forbid the massage therapist thinks I am stupid. I think about my chest. It’s under me when I am lying face down and it is under the sheet when I am lying on my back, so when would I use the towel? I’m running the possibilities through my head like a Rolodex. I am tempted to check my chest for moisture that perhaps she can see but I can’t feel. However, I am reluctant to feel myself up in front of a stranger.

I briefly consider bluffing my way out of it, but decide to just fess up. “My chest…?”

She replies, “Yes, because, you know…”

Um, no, actually I don’t. But I am starting to sweat, because I didn’t know there was going to be a test .

She continues, “….some women are more comfortable when there is a towel around their chest when they are lying down.”

Behind the Jeopardy theme music playing in my head, a light bulb is starting to go off. “Yikes!” I say to her, “Don’t tell me it’s written somewhere I have big boobs!” and I gave a nervous laugh like, they wouldn’t, would they?!?!

“Oh no!” she chuckles, as if that is the most preposterous thing in the world, and I start to breathe a sigh of relief.

“It just says ‘top heavy’.”

Oh. My. God.

I can feel my face get hot and I want the floor to swallow me and my apparently freakishly enormous bosom. But that doesn’t happen. The floor stays solid. I don’t disappear into oblivion as I want to do. And now I have to take my clothes off and unleash the Breasts That Swallowed Pittsburgh.

Once I am lying on the table with my face in the little cradle, the tears start. Fortunately, they drip right through the opening unnoticed. I am so embarrassed I just want to go home and curl up under the covers. Better yet, under the bed. Even better still, under the floor boards.

Shit, just dig a hole and bury me.

Two things occur to me:

1) I apparently am way too prideful and need continual lessons in humility.

2) Maybe hanging onto this memory I will finally lose weight.

Friday, March 6, 2009

MS Awareness Week: Awareness Wishes

I polled approximately 50 people I know who have MS. This is “Awareness Week”. What would you want people to be aware of in regards to having MS. Here are some of their responses, their ‘wish list’:

• That even in "remission" I deal with a barrage of symptoms daily. "Even though I look so good".

• That it sucks!!

• That not only are there the obvious issues with physical problems, but there are also MANY unseen ones: cognitive, bladder, sexual, bowel, TN, etc. (another person added, “A ‘hidden agenda’ of MS symptoms”).

• Fatigue is one of the most devastating effects of MS. It is invisible and very difficult to describe.

• I'd really like all the well-meaning muggles out there to stop sending me newspaper clippings of How to Cure Myself by spritzing my sublingual regions with donkey urine, and stop feeling obliged to mention that Mr or Mrs so-and-so are doing really well on this, that or the other therapy.

• To get people to understand what it means to be "chronic and progressive". That you can't be cured; that you won't "get better", even if you have good days; and the best treatment only slows down the rate you get worse.

• That stress - physical or mental - can royally fuck with us.

• I think I'd like people to be aware that MS is a disease. So many of my acquaintances seem to think it's an illness like a cold, that it will go away. It won't. I'm as good as I'm gonna get.

• That we can seem fine one minute and then totally clusterfucked the next minute...

• I'd like people to understand how CRUSHING it is. It is crushing financially, emotionally, physically and mentally.

• I'd also like people to know, just because you know someone who is worse off, does not mean I am not suffering.

• I would like to see muggles learn more about mobility issues for folks with MS and others. Don't park in handicapped spaces because you're "only running in for a second." Don't try to cut someone off to get out the door before a person using a walker or a chair. You're reflexes are faster than mine, and I can't always stop before I run into you. Don't keep moving your car forward while I'm in a crosswalk. I can't go any faster, so get over yourself! And if you invite me to a party, please make sure I have a place to sit, preferably in a location that allows me to socialize.

Yes, we do indeed call people without MS muggles. Goofy, but what can I say? It’s better than some of the other possibilities. We belong to a club that nobody wants to join, we are entitled to some perks.

One of my friends pointed out yesterday that I am getting many responses from people who already are aware of MS and its devastation. But we really want this message to go to people who had no idea exactly what this MS thing was all about.

We don’t want to climb Mount freaking Everest. We just want to live with as much dignity and autonomy as possible. Just like YOU! So spread the word, PLEASE!! MS is a horrible illness, but it can be tolerable with your help and understanding. With your support for fundraising to find a cure. With your awareness.

My friend Barbie wrote a very pithy little poem that wraps this whole issue up. If nothing else, we People With MS, at least the ones I know, love to laugh:

I have MS, I am a mess.
The doctor tells me not to stress.
My feet are numb, my eyes are blurred
I struggle to find my next word
The meds I take are priced quite high
To keep the faith I try and try
My family cries, “Do this! Do that!”
“You need to rub on Emu fat,
and use stuff we saw on TV!”
“You should get disability!”
They all have answers for my plight
but nothing makes my shit work right
I’ve tried it all and nonetheless
I have MS. I am a mess.

Thanks to all my wonderful, witty, indomitable friends, all PWMS, for your contributions, your enthusiasm and your resilience!!!!

Thursday, March 5, 2009

MS Awareness Week: What to Do, What to Do?

So you find out you have it. You know vaguely what it is, what it does, what it might do. You have an idea what the costs are going to be, monetary, physically and emotionally. What next?

Everyone has a different response to having MS, even if their coping styles might be in the same continuum. We are all different, with different priorities and different baggage. Our history and our present circumstances will combine to form the foundation of what our next steps will be.

The possibilities are endless, it would be pointless to list them here. So I am going to share my thoughts, after four years of experience, about what could be the most proactive approach to dealing with something that will be your unwanted guest for the foreseeable future.

Maybe I should start by suggesting some things that might not be in your best interest. Of the things I will cite of them are counterproductive behaviors that someone who may or may not be writing this piece did indeed engage in.

• Don’t pretend it will go away on its own.
• Don’t allow your family to ignore it as well.
• Don’t ‘forget’ to take your medicine all the time because it is PREPOSTEROUS that you, someone who had babies at home, have a chronic illness.
• Don’t isolate yourself.
• Don’t make hasty decisions.
• Don’t think your life is over.
• Don’t settle. For anything. Healthcare, information, assistance, anything.

So here are things that could be helpful.

Find out all you can about the illness, whether it has happened to you or a loved one. It is such a cliché, but knowledge is power. Knowing about how the disease works might make you feel less scared. Unfortunately, it may also make you feel a thousand times worse, so make sure you reach out. Talk to someone who will listen without getting too emotional as well, such as a clergyperson or therapist. Someone who can maintain perspective can really help you recover your's as well.

Find a doctor you like and trust, even if it means changing several times. You deserve the best care available. You need someone who will listen and be respectful, someone who will be a partner, not a dictator.

Consider all your treatment options and what impact they will have on your life. Don’t go with the first one offered because it is your doctor’s favorite.

Make sure your family really understands what MS is and what it does to you. Ask for help. Life has changed, you all have to find new roles. Again, if that process is hitting bumps in the road, consider a third party to help coach you along.

If it appeals to you, look for support groups. I am not a big joiner. But I have a group of online friends that I could not survive without. We are all similar in our irreverence, sense of humor and intolerance for platitudes. But that isn’t everyone’s cup of tea. You know yourself better than anyone. If you need a warm fuzzy group get out there and find one.

Keep doing the things you love as much as you can. This is something I am still working on. I am a museum fanatic, but can’t manage the walking anymore. And I am so reluctant to use a wheelchair. I might try a walker as an interim step, but still have to steel myself to that purchase. Do yourself a favor and just go for it. Although even as I say that, I recognize some of us need longer to process things than others (decades in my case). So if you need to take your time, do that. Just don’t close the doors to things that bring you joy.

Involve your family. Make sure they understand how sick you are. This is a huge mistake I have made, still keeping that Superwoman persona going. To my great detriment. Because my children appear to have a really hard time acknowledging I need A LOT of assistance. That is my fault entirely for allowing the myth to persist.

One thing that I have also found makes me feel empowered is the annual MS fundraising walk. I will be honest up front, the MS Society is not my favorite organization. For one thing, it has MS in its name. Instant dislike. For another, if it was a person, it would be so freaking perky. I hate perky. And I, along with my fellow MS cranks, find the current ad campaign embarrassing. “Join the Movement”?!?! To some of us with adolescent minds and a bent for scatological humor, ‘movement’ only means one thing. For others of us who were around in the sixties, it is like, come on, is that the best you could do!?!

However, A BIG HOWEVER, the MS Society does really, really good work. Not all the local chapters are the same. For example the chapters in Connecticut and St. Louis earned the highest rating of four stars from Charity Navigator (a GREAT source of information about charities), but the one in Charlotte only has one star. It depends on their local administration. I am so fortunate to live in the northeast, where most of the chapters are powerhouses of assistance. They provide information, aid, classes, support, encouragement and fundraising.

The National MS Society has a good ratio of programs funded to administrative costs. More than eighty five percent of all dollars raised goes to help people with MS. Some of the local chapters do even better. Some examples for comparison: the American Cancer Society uses only 68.4%, the National Organization on Disability, 64.7% and the American Foundation for the Blind, 69.2%.

The MS Walk takes place nationwide and in our area it is on the third Sunday in April. When I take part, I feel as though I am doing something proactive for all of us with MS. Some of the money goes directly for programs, but much goes to research to find a cure. The research done over the past years has lead to more and more and more treatment advances, so a cure does not seem impossible.

Plus, the walk can be fun. My team grows every year, and here is my shameless plug: I would LOVE it if you would join Team Cooper this year on the MS Walk. There is no minimum to raise, no minimum to walk. It is a great way to get together with friends and raise money for a good cause.

This link takes you to my personal page at the MS Society website. You can register for our team or make a donation.

Marie's MS Walk Page

Tomorrow I will do my final MS post for this week. I will share what people with MS would really like others to know about having this disease.

Wednesday, March 4, 2009

MS Awareness Week: The Cost of MS

Our culture measures things in what they cost. How much, how little, sales, bargains, luxuries, vanity purchases, so many of these transactions feed our egos and our self concepts.

The costs of MS are both calculable and intangible.

Raw numbers are relatively easy to come by. There are approximately two and a half million people in the world who have MS. In the United States, I am only one of about 300,000. Here are some of the costs to me.

The first things I think of are the medical costs. I have 11 prescriptions, five of which I take every day (8 pills) and five that I take as needed for symptoms such as muscle spasms and pain. Three of the medicines that I need to take every day cost more than $400 each per month. The others are in the neighborhood of $10 to $100 each. If I didn’t have insurance, I would be looking at a total cost of about $1800 every month for medicine I need to function. My co-pays run around $150 instead.

The Tysabri I go for once a month costs approximately $2000. It is another $1500 for the infusion center. I pay a $20 co-pay for the center, nothing for the drug.

Bi-annual MRI’s come in at around $2000 each. I pay nothing.

I have to see three different doctors every three months, on a rotating basis. Another $20 a pop, insurance picking up the rest.

So go ahead and complain about managed care.

I am one of the extraordinarily lucky ones still able to work. What is even better, I work from home. But I was out of work for ten months before I started this job in July. In the two years preceding, I was ‘laid off’ from two different executive level positions within days of ‘coming out’ with MS. Illegal you think? Yeah, try to prove it. Two lawyers got me great packages (tacit admissions of guilt). But court battles would have cost me more emotionally and financially than I was willing to spend.

In four years I have only missed ten days of work due to MS, five consecutive days each time, each time because I was in the hospital. I know how fortunate I am to have that record.

But let’s consider the cost of other kinds of time. Time to order the prescriptions, time to pick them up, a half a day out of work each month for the Tysabri (that I make up during the rest of the week, working longer hours the other days or sometimes on Saturday), at least one doctor visit a month. About eight hours a month there. One business day.

There is also the time I can’t cook, I can’t do laundry, I can’t clean my house. Doing anything physical takes longer. Others have to do it or I have to spend twice as long when I am well enough. There is time I would love to be going to the movies, playing with my grandson, knitting. But I have to rest instead because I am too weak and in too much pain to do anything else.

In the meantime, there is the cost of discouragement. If I can’t clean, I can’t have people over, which is one of my favorite things in the world to do. I lie in bed, or sit on the couch looking at what I want to do, dusting, vacuuming, baking, trivial stuff, I know, but I desperately I miss who I used to be. Another cost.

There is the cost of independence. No more walks in the city. No more shoveling snow (I liked shoveling snow!). No more painting a room on a whim. No more getting on a step stool to wash the curtains when they need it.

The self-conscious clumsiness of using a cane or a wheelchair. Looking at a curb, wondering if you will be able to get your leg up high enough to negotiate it. Sitting all through a church service.

For other people with MS, there is the very real permanent cost of a job, voluntarily or involuntarily, either by being subtly discriminated against or by being forced to go on disability because of your health. Estimates are that it can cost up to $100000 annually per person with MS in lost wages, lost productivity and cost of medical care.

There are almost no resources available for the jobless MS person who could train for another position and continue to contribute their talents to our society. Some people do manage it, reinventing themselves, finding new, less physically strenuous careers. But that takes a perfect storm of support, finances and wherewithal. For many of us, one missing piece means you simply cannot get to another place. Considering the brilliant people I know with MS, that is the biggest, most tragic loss of all. Loss of viable, gifted, marvelous participants in our lives.

There are of course also the permanent losses through death of wonderful, anonymous people known only to the ones who loved and miss them. And the more public losses of stunning talents like Jacqueline du Pré and Richard Pryor.

MS can cost people their spouses, their friends, their sense of who they are. One friend with MS tells me, “If I could tell the world what having MS is like, it is the progressive loss of small bits of oneself continually, until there is nothing left to lose. Losing friends, relationships, jobs, wealth, confidence, wellness, independence, optimism, thinking, walking, strength, balance, and sight.”

It is the ultimate thief.

Tuesday, March 3, 2009

MS Awareness Week: Diagnosing and Treating MS

As awful as it is, there is probably no better time in history, if you have to have it, to have MS.

In the past, it could take years to determine an MS diagnosis. Because heat exacerbates MS symptoms, at one time patients would actually be placed in a tub of hot water. If they got worse, the diagnosis was made. The symptoms, in the beginning, can be so vague and mimic other things, that MS is usually not the first thing considered. Fatigue? Well, you have four kids or a stressful job or fill-in-the-blank. Dizziness? It’s probably an inner ear infection. Numbness in your feet? Probably a pinched nerve. The list can go on and on.

It is when those symptoms become a repetitive constellation that other things are looked at, other tests are ordered. The most common tests are spinal taps, evoked potentials and, now, Magnetic Resonance Imaging (MRI). Spinal taps show a predominance of a certain substance in the spinal fluid that is associated with an MS diagnosis. Then one’s medical history is looked at for patterns of attacks.

But now the real clincher is usually an MRI, which wasn’t even available until the past decade or so for many people. An MRI will pick up the damage to the spinal cord and brain as glowing white spots, the tell tale signs of multiple sclerosis. Sclerosis means scar. And with MS you have multiple scarred areas of damaged nerves.

Getting the news of an MS diagnosis is experienced in a variety of ways. Some physicians are blunt and blurt it right out. Some beat around the bush, as in my case, saying ‘maybe’, ‘possibly’ and ‘could be’ a lot, for months, even though they knew full well that was exactly what was wrong with me. When I was in the hospital with my second relapse I said to my doctor “So does this mean I have MS?” She gave me the ever so helpful reply “Looks like it.” And walked away, leaving me sitting alone in the hospital bed. So I never got the “I’m afraid you have MS” talk. No comforting words, no pat on the shoulder, no sympathetic “I’m sorry”’s. Nothing, actually. I was too much in denial to be shocked or stunned or even particularly upset. Except that I was the one in the hospital, it felt like it was happening to somebody else.

In a way I was lucky to have a diagnosis after a relatively short time. Some people go for years without knowing for sure and are often treated as hypochondriacs by their healthcare providers. It can almost be a relief to them to have a defined condition to deal with.

Once the diagnosis has been made, as with everything else with this disease, there are about a million different paths you can go down.

Some immediately embrace the entire concept and become MS. Some pragmatically decide they will simply cope as best they can. Some of us really fall apart (who could blame us?). And some (this would be me) decide they are going to put their fingers in their ears and with total maturity mentally go “la la la la la…I can’t HEAR you!!!”. It took me years before I could even say “MS” out loud, never mind acknowledge to myself I had it.

The next step is deciding a treatment regimen. Fifteen years ago, there was no such thing. IV steroids could help limit a relapse, but there was no real treatment. That changed with the introduction of interferons, which, while not a cure, were found to limit the frequency of exacerbations or relapses (these are periods where your MS symptoms ramp up full throttle to the point you can’t function). There are now several drugs that can be chosen, depending on your lifestyle, your history and your risk tolerance.

All the medications are injectables. There is no oral treatment at this time for MS. The interferons can cause miserable side effects, such as feeling as if you have the flu all the time. Another drug, Copaxone, can cause painful reactions at the site of the injection. I was on Copaxone for a while and hated it for that reason. It is a daily injection that I would give myself, but the reaction I had after each shot was so horrible I would be in tears. Plus, it didn’t work, I kept relapsing. So I moved onto the final stop on the MS med line, Tysabri.

Tysabri is the newest MS drug, about four years old. It was taken off the market for a time because several patients who were on it died from an incurable brain infection. The virus that causes this infection, PML, is present in all of us and is dormant unless your immune system is compromised. And that is one of the things Tysabri does, it lowers your immune system, making you more susceptible to all kinds of infections.

After revamping the protocol, Tysabri was reintroduced in 2007, which is when I started on it. It is administered every 28 days through an intravenous line at an infusion center. I spend the afternoon there, premedicated with IV Benadryl to prevent allergic reactions. The Benadryl knocks me right out. So I have my little routine: I knit, I pray I won’t develop PML and die, I fall asleep for about two hours, I wake up and knit a little more, I go home. So far I have only had two really serious relapses in the past two years, whereas before I was relapsing constantly. So, weighing my risk for a deadly virus, I just keep my fingers crossed. I asked my neurologist how long I would stay on the Tysabri and he stated flat out “Until something better comes along.” That could be a very long time. But hopefully not.

So all around, with better diagnostic tools and treatments, 2009 is not a bad time to have this crappy disease. Research is being done all the time to try to find a cure. That is what MS fundraising is all about. There is exciting work being done with oral medicines and with ethically obtained stem cells.

It is my dream to be able to tell my grandson some day, “I used to have this illness called MS. But I don’t anymore.”

Monday, March 2, 2009

MS Awareness Week: Just What Exactly Is MS Anyway?

Just about everyone knows MS is something not good. But many people do not know exactly what the heck it really is.

For starters, I can tell you some things it isn’t:

• We are not ‘Jerry’s Kids’
• MS is not contagious
• It is not curable
• There is no medicine that you can take to make it ‘go away’
• It is not like having a cold or the flu and you will ‘get better’
• Like old age, it ain’t no place for sissies (H.L. Mencken)

MS is a neurological disease that affects the nervous system. Because the nervous system manages every function in your body, MS can cause problems with every function in your body. It can affect EVERYTHING. Mobility, emotions, mentation, fine and gross motor skills, elimination, sexuality, everything. Wherever the nerves are damaged by MS, that area will not work properly anymore. Ever. And MS is indiscriminate in what it attacks. The effects can be anywhere.

The symptoms include numbness (not being able to feel your hands, feet or other parts), weakness, fatigue, pain (from damaged nerves and/or muscles spasms), depression, losing thoughts, blindness (temporary and permanent), bladder dysfunction…and these are the just most common symptoms. There are even more. Everyone experiences MS differently. Some people have most of these symptoms all the time. Some just have a few some of the time. Some have most some of the time. It is a total, unpredictable crap shoot. There are only two things that are pretty certain. One, you will get worse. Maybe you will never be bedridden, but you will get worse to some degree. And two, you have no earthly way of knowing how your disease will progress or what you can expect.

MS is a ghastly roller coaster and a never ending guessing game of what you will be capable of doing in a single day. What you could do on Monday, simple things like laundry, dishes, make dinner, run to the post office, could be out of the question on Wednesday. Wednesday could be the day that your legs will not obey your instructions. When the pain throughout your body is breathtakingly relentless. When it takes every ounce of energy you have simply to get dressed, after which you drop exhausted and breathless into the nearest chair. Sometimes you will have a great morning, but you will be crippled by fatigue and pain in the afternoon.

There is no pattern to this, no warning. And frequently, among your family and friends, there is difficulty understanding. How could you be fine (or sort of fine) one day and incapacitated the next? How come you needed a cane last week, but not today? And why isn’t a cane enough to go to the museum? You can walk (sort of), why do you need a wheelchair? Trying to explain these things, even to people who really want to get it, can be as exhausting and disheartening as having the disease itself.

Well, I needed a cane the other day because I was so wobbly I couldn’t walk a straight line. But that is gone today. I can’t use a cane for the museum (or the mall or the park) because it is too much. I can go short distances, but then my body rebels. For me, walking without stumbling or staggering takes enormous effort. If I overdo it and don’t listen to my body starting to tell me it’s tired, I will be laid up for days. I can’t run all my errands on Saturday like I used to, going from stop to stop until I’m done. Because by the second stop my legs are like spaghetti and I am so dizzy I have spots in front of my eyes. I have to go home and ‘rest’ and complete those tasks another day because today is a done deal. However, none of this shows, so you look pretty ok. That is the MS joke: “But you look so good!!”

I don’t know why or how I developed MS. That is another part of the puzzle of this illness. More women get it than men and more people get it who grow up in cold climates. So I’m two for two there. Statistically, there is a slightly increased possibility for my siblings and children to develop the disease. But mine haven’t. And there is no one else in the immediate family who has it either, not cousins, aunts, uncles, parents, grandparents. A rough count of these relatives comes in at around 120. I am the only one with MS.

Most of the literature will tell you MS is not a fatal disease. It is not overtly deadly. But because of the problems it creates, it can lead to deadly consequences. Immobility can lead to pressure ulcers which can lead to septicemia which can be fatal. The same with bladder infections. Many of us cannot empty our bladders. Those bits simply don’t work anymore, especially for people who have MS damage to their spinal cords. The pooled urine, that we don’t know is there and can’t get rid of, is an ideal source of serious infection.

Medications to treat MS patients can have dire side effects. There are breathing issues, swallowing and choking issues, and, at the top of my own personal repertoire, falls. The last bad fall I had primarily left me with nothing more than severe bruising. The bad one before that broke my shoulder in four pieces. How long before I pitch down the basement stairs and fracture my skull?

I know that sounds like pessimism, but it is actually realism. I don’t look for the worst, but the worst has a sinister way of insinuating itself into my life. It is simply another part of living with MS.

And there are ways of living with MS. After all, you only have two options, live with it or die with it. If you choose to live, life is hard but there are ways to manage.

For the rest of this MS Awareness week, I'll talk about other challenges of dealing with MS, such as treatments and coping. And I will share what people with MS believe is important for others to understand about having the illness.

Sunday, March 1, 2009


When I started my blog I was certain of the direction I was going: straight back to a size ten.

I would keep our collective spirits up with tips and pep talks. I would crow my successes to the world!

What an ass.

The more I wrote, the more fun I had with both my writing and the responses I was getting. And I discovered something interesting. Pontificate: No responses. Make myself and everyone else laugh: Multiple responses.

I am not a big one for change. My first and only logos have been books. What else was I going to use for illustrations? Fat?

However, as my life has evolved over this past year, as my confidence has grown (OMG! I have TWENTY FIVE FOLLOWERS!), I decided I wanted my little pictures to be more of an accurate reflection of what we are all about. Not the royal 'we', but the we who create the interactions here. Without you there would be no me. (I can already see my therapist having a field day with THAT one.)

Plus, a man at another blog made fun of people who have logos that don't match their content. And he used REAL examples. Scary!! If someone made fun of my blog to my face I think I would have to be hospitalized. Sedated at the very least. Hey, maybe I said my confidence had grown, but I had a low starting point.

So, I made myself a new logo. I really like it. It is more 'me' than ever before.

P.S. Those of you who get my posts by e-mail (thank you for that!), check out the new heading by going to the blog site.