Desperately Seeking Breathing

Last week, while we were all already dealing with a terrifying hurricane and no power for days, I began experiencing dramatic shortness of breath after only taking a few steps.  I struggled and struggled, trying to convince myself it was just something I was imagining, even though I was taking deep, prolonged gasps for air with the least bit of exertion.   I was attempting to persuade myself that I was simply deconditioned and if I pushed myself just a little bit harder I would end up with Olympic level lungs.   Finally on Sunday, Mary Kate announced she couldn’t watch anymore and she called 911. 

I actually conceded to ride in an ambulance, because I knew I wouldn’t have made even the few yards to the car.   And I agreed to go because all through that whole brutal week, one particular exchange had loomed in my memory.

Two weeks before Christmas in 1993, my husband Dennis offhandedly mentioned his past bout of pleurisy was bothering him.  What do you say to someone who you have been married to for 17 years and who is notorious for not taking care of himself?  “What are you telling me for?  Call the doctor.”  And he replied, “I will, right after the holidays.”  Well, he never made it to the holidays.  He died of a massive heart attack on December 20.  He had no idea he was mortally ill.  He never would have left his kids behind if he had had any choice in the matter.  These are the things that went through the head of this particular notorious patient, over and over again, as I struggled to breathe.

So off I went, sirens and all.  I was too scared to be mortified.  Well, I was too scared to be really mortified.  I truly was more relieved than anything.

I suppose because I grew up with a world class hypochondriac who I never believed a word from, I always assume that I will not be taken seriously.  And, as a matter of fact, I often am not.  Part of it is, yes, due to managed care and the time constraints that limit practitioner revenue.  But I think it is far more because healthcare providers are jaded, bored and do not listen.  (My PCP is an incredible exception, but more about him another time).

I lay on the gurney in the ER, wearily waiting for the first in a series of MD’s who would ask me the same questions, few of which would be apropos and who would not listen to the answers anyway.  Then curtain discreetly opened enough for a young voice to ask “Mrs. Cooper?” And he leaned his face in just a crack, with a raised eyebrow.  He was the most adorable thing I had seen in a long time and I nearly told him that.  Way to start an assessment by being defined as a dirty old lady.

He was cute, as I said, but mostly he just exuded niceness.  He was polite and sensitive but not smarmy.  He listened to my responses and then repeated them back to me in different words!!  Agghhh!! He got it!  When he came back with my lab results, which indicated I was in dire need of a blood transfusion, he looked so concerned I thought he was going to cry.

I was going to be admitted, so I was taken to a new unit the hospital had just opened to facilitate patient back-up.  Because oversight of this department was my job at another hospital, I knew what they were trying to do, but they were failing miserably.  Beds in our local hospitals are like gold.  When you have a high population of elderly and poor, as you do at the Jersey Shore, ER’s get backed up very, very quickly.  A hospital only has so many beds.  Most of them are dedicated, such as orthopedic, surgical, or mother/baby.  You can only place that kind of patient in that bed.  If your patient has a co-morbidity, such as a communicable disease or infection, they have to be isolated or put in a room with a patient who has the exact same diagnosis AND is the same gender.  So your bed possibility is reduced even further.  It is a constant juggling game.  Sometimes, the Gods smile and you can fit everyone together like a Chinese puzzle.  Other times, it is a nightmare of vast proportions with 20 seriously ill 80-plus year-olds languishing in the halls of the ER.  Within hours you have family members in your office, who you completely sympathize with, screaming at you to get their grandmother out of the ER corridor where she has been for 20 or more hours.  But you literally have nowhere to put them.

So up pops the Transition Unit idea (that is what we called it at my facility, it has other names, such as the Discharge Unit, which confuses the hell out of everyone because the patient is only being discharged from the ER to the hospital).  Anyway, the thought process is to get the patient completely assessed and prepped and tied up with a little bow so they simply have to be moved into the proper bed when it becomes available. The patient gets to wait in a comfortable bed in a nice little curtained cubicle.  Sounds like a great idea, doesn’t it?

Only it doesn’t work, except as a sort of a highway rest stop, without the tasteful souvenirs .  The patient continues to suffer in limbo.   Patients are not discharged from the main hospital any faster, and that is where the backlog starts.  So patients aren’t stuck in the hallways anymore, but they do get stuck in these way stations.  They are uncomfortable and there is no privacy.  When you are already sick, you feel simply miserable.  Patience frays, family members lose their tempers.  Frequently with each other.

I ended up in the Discharge Unit for about 24 hours.  Every conversation with every specialist who came to talk to me was overheard by the entire place.  The space assigned to each patient, divided by curtains, is approximately 8’ by 10’.  And I am being generous.  The guy in the cubicle next to me snored all night long, interspersed with shouting out obscenities.  Charming.   The little old lady in the cubicle on the other side of me was enduring the pain and confusion of dementia and she whimpered the whole time.  And periodically snorted violently.   I spent the night in contemplation and prayer.  I contemplated holding pillows over their faces and prayed for forgiveness for wanting to kill them.

Two members from entirely different families came to actual physical blows as long simmering issues exploded over their sick, elderly relatives.  Mom always did like you best.

So by the time I was sprung, everyone else had already been moved along with the indelible memory of when my last menstrual period was, if I was having difficulty urinating and if I was sexually active, among other delightful tidbits.  For, additionally, the subtext in every single solitary consult was Fat.  Did you know you were Fat?  How long have you been Fat?  Did you know being Fat can make you sick?  What are you doing to stop being Fat?  Fat, fat, fatty fat fatty.  Fat.  I am ready to stick my head in the oven, but I know if I ask where the kitchen is they will think it is because I am Fat.  I turn on the television power for the Internet and notice for the first time the screen is personalized.  Name: Marie Cooper, Room Number: 6007, Overweight.  WHAAAT?!?!  It’s even on the effing TV?!?!  Then I see this is the weather: OverCAST.  Oh. 

For a horrible minute, I thought even the Internet was on my Fat Case.

 

 

On the plus side, my room is spacious and bright.  I am getting great care from kind people (for the most part).  Mary Kate brings me flowers, and better still, brings me Madailein, who charms everyone by saying “Hi Da Da!” when my male tech walks in the door.  He did turn a trifle pale.  My dear friend Kathy from high school comes by.  Deacon Gail brings me Communion.  Christine comes by but I am at a test.  She comes the next day in a blizzard!!  I am surrounded by love, including virtually on Facebook with dozens of kind and encouraging thoughts.

I go for test after test, but I am still so short of breath it is almost incapacitating.  While talking to the pulmonologist, I realized that the litany of symptoms is a mirror of the transverse myelitis I had eight years ago. I suggest that to her and she happily agrees it is a possibility.  I started the IV steroids yesterday, too soon for any improvement, but fingers crossed.  On the other hand, I am feeling overwhelmed that the MS is causing such significant and crippling symptoms.  The prognosis will not be a good one.  People who have lung involvement end up on respirators.  I am so scared.

One of the people I encounter here is a jolly woman who brings me my dinner tray.  I am very down about the whole Fat thing and I say so.  She puts her hands on her hips indignantly.  “Honey, you are a lovely looking woman!  Beauty comes from the inside.  No one has a right to make you feel bad about yourself and you need to tell them that.  You need to say ‘That makes me feel bad. Don’t talk to me like that!”  I don’t care who it is!”  She shares some of the incredibly overwhelming circumstances she has struggled with and I am so touched by the generosity of her spirit.  I feel better simply from being exposed to her spontaneous kindheartedness.  It is such a gift to have someone like this placed in your path when you most need it.

And then there was the blizzard!!  A week after the Jersey Shore was devastated by Hurricane Sandy, we are hit with a pre-season blizzard.  People who have just gotten their power back after six days lose it again.  No one is prepared for eight inches of snow.

The view from my hospital room on Wednesday.  I know it says Thursday, but I am not operating on all four burners right now.   So that is a big FAT mistake, ok?!?

And the view this morning approximately 5:30:

Looks like that pesky demon may still be there.

Continuing to pray for strength and grace and praying the same for all of you, my wonderful virtual true friends.

 Did you like what you read? Let others know. Thanks!

I Am a Renegade

With the pretentious assumption that I have something worth saying, I have started a separate site just for discussing life with MS.

There are many blogs, websites and forums out there that deal with Multiple Sclerosis. I have found most of them, while earnest and well intentioned, are not for me. Forums where people sign their names with illustrations of bunnies and rainbows are not for me. Blogs where people say delusional things like “I have MS but it doesn’t have me” are not for me. Websites that extol individuals who do things like climb Mt. Everest despite having MS are not for me. Because that is not the experience of MS that most of us have. Web sites that call a spade a spade are for me. So that is what mine will be.

I hope you will stop by and even more I hope you will contribute. I always welcome comments. I will also welcome guest posters; e-mail me with your thoughts or ideas for a post. And I have a separate page for our dedicated, often underappreciated, caregivers, where they can describe their journey along this rough road.

Having MS absolutely sucks. Sure, your attitude towards life is a choice. But I cannot pretend that Multiple Sclerosis has not stolen my career, my independence and my future. I hate it with every fiber of my being and I will not go quietly. That is why I am writing MS Renegade.

Did you like what you read? Let others know. Thanks!

Breaking News, Breaking Faith

The topic of this coming week's Grand Rounds is doctor/patient communication, which in some cases, many cases, is an oxymoron. This is one of my experiences with this subject:


In late summer 2005, I developed a condition called Transverse Myelitis. I ended up in the hospital, paralyzed and terrified. Once the diagnosis was made I was started on a course of IV steroids and within hours my symptoms started to abate. So I figured this was a one shot deal, a freak occurrence. I found out later that it was clear at that time that the TM was caused by Multiple Sclerosis. But no one told me.

Instead the condescending little snot of a neurologist that I happened to get in the hospital told me at 50 I was “too old” for Multiple Sclerosis. He did not tell me my spinal cord was alight with old MS lesions.

I switched neurologists. I liked the next one I went to, a seemingly considerate and pleasant young woman. But even she did not tell me.

Within six months a relapse landed me back in the hospital. My doctor stood at the bottom of my bed and told me there was a new lesion, this one on my brain.

Me: So does that mean I have It?
Her: Looks like It.

And she left. Neither one of us even used the words “Multiple Sclerosis”.

So that is how I was told I had an incurable, crippling disease. I was all alone, in a hospital bed. I don’t care how hard it is to give someone bad news, this was cruel and utterly unacceptable.

I’m now on my third neurologist. He is respectful, talks to me and answers my questions honestly. Sometimes a little too honestly. Because I still have trouble accepting it, I will occasionally ask “Are you really sure about the diagnosis?” And he will reply cheerfully in his cute Australian accent, “Oh, you DEFINITELY have MS!”. Sigh.

In my head, I have thought about what I would imagine the ideal scenario to be. I’m not greedy or excessively needy, so it wouldn’t involve hand holding or even inordinate gravity or sadness. My model is simple. I would have liked someone to tell me unequivocally but gently. I would have liked to have had the option of having a loved one with me. I would have liked someone to tell me they were sorry I had this, but that we would work together to manage this brutal illness. In other words, I would have liked to have been treated the way anyone would like to be treated: kindly, compassionately and sympathetically. That should not be too much to ask.

Empowering People With Disabilities

Today I am taking part, with over 300 other writers, in an online event to raise awareness of what it means, and what it takes, to empower people who are living with disabilities.

Like so many others, I never expected to fall into this Club, one of any number that no one wants to belong to. People we encounter everyday all have their own struggles and heartaches and challenges, it is part of life. For most, hardship is occasional and short lived. For those of us with chronic conditions or permanent disabling injuries, daily living equals confronting limitations minute by minute.

As Multiple Sclerosis steals more and more from me, it has become harder to do things I completely took for granted my whole life. Getting in and out of bed, getting dressed, taking a shower are all normal activities of daily living that were done mindlessly and effortlessly before MS, but now all take exhausting effort. Once those things are done and I am finally out the door (doing an inventory in the car to make sure I haven’t forgotten something and I actually have all my clothes on) I have to then decide what am I going to use to get around. Will a cane suffice? Is it too hot for that? Then I’ll use my walker. Unless I have to walk for more than 10 minutes at a time, then I need the wheelchair. The cane and walker I can manage by myself. The wheelchair, I need someone to help me load, unload and push me. I can’t push myself because I have the added bonus of an almost useless right arm following a shoulder fracture.

My doctor has ordered a power wheelchair for me. We have already begun the battle with the insurance company to cover it. But my co-pay for the new chair would be over $1000. I don’t have $1000, so the whole thing is moot. Additionally, a power chair is so heavy I need a lift or ramp to get it into my SUV. I can’t afford those things either and they are not covered by insurance.

Are you still with me? We haven’t even left the driveway yet.

I was laid off in February. So if it is a job interview I am heading for, I have to weigh the pitfalls. Showing up with a cane or walker, how low on the list do I drop? It is clearly pretty far, as, despite a stellar resume, I have received no offers to date. But it is impossible to prove discrimination.

I always have to consider where I am going and how I will negotiate the landscape there. Are the doors easy to operate? Are there stairs? Is there a convenient bathroom?

Remember, we’re still in the driveway.

This is our daily reality.

Once out in the world, thanks to the Americans With Disabilities Act, there is more disabled access than ever before. Naturally, it is a work in progress. It is impossible to retrofit every existing structure in the United States to accommodate a variety of disabilities. My philosophy is one of patience and reasonableness. To be a gadfly on this issue would not serve me, or anyone with a disability, well. I see how people like that are treated, how they are resented, how they are not taken seriously and how they ultimately damage the cause they are trying to promote.

It is essential to recognize ADA compliance as an important issue that effects us all, not something that a few whiners with a sense of entitlement are carrying on about. It is important to be taken seriously and to be understood, because there still is so much to be done. And this needs to be a concern for everyone because every human being has the potential to become disabled.

For one thing, people need to be taught how to interact with people with disabilites , to behave just as they do with everyone else. This was emphasized to me when I went to the theatre with my friend last week. People, when they didn’t look away, gave me pitying smiles. Several leaned over, almost appearing as though they were going to cluck me under the chin, and asked if I was enjoying the show. “Very much so!” I would reply with a frozen smile. After a few times it got a little comical. Have you ever been asked that question by a complete stranger?!? Don’t be artificially nice to someone who is disabled. It is insulting and creepy.

I was raised in an Irish Catholic tradition of self effacement and a firm belief that pride goeth before a fall. Combine that with 1950’s traditional gender roles and chronically low self esteem and I am not a person who is comfortable with the word “power”. Or with asking for things I need.

On the other hand, I also have a deep vein of stubborn rebelliousness that has bubbled up my whole life, making for a constant dichotomy that has both kept me strong and gotten my ass in a heap of trouble on occasion.

This wacky combo allows me to be patient with the barriers that are place in front of me, but tough enough to challenge things that can clearly be changed.

This would be my wish list of disability awareness and empowerment:

• People with disabilities are just like everyone else. Treat us that way. Don’t treat us like exotic objects or creatures needing pity. We used to be you. You could be us.
• Don’t refer to the accommodations given to someone with a disability as “perks”. We don’t want special favors, or “concessions” as another person with a disability referred to the accommodations that are occasionally necessary. We just want to live our lives as normally as possible.
• Remember, we would gladly give up that parking placard for the capacity to walk again.
• Don’t make assumptions about a disabled person’s abilities. Someone in a wheelchair is most likely to be just as cognitively aware, if not more so, than everyone else. Don’t assume they are simpletons and talk to them like they are 5 years old.
• Don’t dismiss us from the job market. I am desperate to work again. But prospective employers see my limitations, not my years of experience. They lose the fact that I excel at trouble shooting and problem solving and, with my work ethic, would be an asset to any employer.
• If you are aware of an access issue either in your place of work or any other building, bring it to someone’s attention politely and with the assumption that it is either already under consideration or has not been an issue before. Do not behave as though it is a deliberate attempt to keep disabled people out. Like with anything else, you get more flies with honey than with vinegar. And yes, it is the law, but sometimes making it work takes an incredible amount of time and effort.
• Be sensitive to the architectural integrity of places that may never be capable of becoming completely accessible, such as historical buildings. People with disabilities do not want to destroy the historic legacy we have in the name of access.
• If the access we have is not ideal, such as is only achieved through the kitchen of a restaurant, don’t take it personally. Assume that they have done the best they could in terms of the architecture and be happy for the access that you wouldn’t have otherwise.

Finally I would implore, be an advocate for the disabled. Empowerment is something everyone should feel, no matter what their status. Awareness takes time and it takes teamwork. If you don’t already know someone with a serious disability, odds are you will. An accident or illness can put you there with the speed of light. So this is an issue for all of us.

Thanks. Just by reading this, you could make a difference.

Crisis and Discord in the World of Multiple Sclerosis, Continued

On June 28, 2010, an article about CCSVI appeared in the New York Times, the first major news outlet in the United States to provide such coverage. Written by Denise Grady, it is a succinct and balanced report on the condition, the treatment and, largely, the furor surrounding it.

I am on the fence about CCSVI and what is now referred to as the “liberation procedure” (because of the recovery, or “liberation”, that many patients have reported). The evidence at this time is primarily anecdotal and there has not been a large scale, blinded study. I also believe MS is a spectrum of diseases that will never have one single cure. However, I read the article with interest. And was stopped in my tracks by a statement attributed to Joyce Nelson, the President of the National MS Society. She was quoted as saying, in regard to the unprecedented hue and cry for this procedure:

“I wasn’t aware how thin the veneer was and how close to the surface the frustration was.”

WHAAAAT?

The President of the National MS Society is not aware that MS patients ARE DESPERATE FOR EFFECTIVE TREATMENTS?!?

I wrote an outraged letter. I have never been a fan of the NMSS, although I have done the walk every year, mostly to avoid a sense of utter futility in facing this disease. But I receive a glossy magazine every two months that really offends me. It extols MS patients who climb Mount Everest or folks who are relentlessly cheerful as they claim MS is a gift that has caused them to appreciate life or people who parrot the MOST obnoxious lie of all and say “I have MS but MS doesn’t have me”. It is loaded with pharmaceutical ads, which cause me to question their neutrality. I have no place in this organization as someone whose life has been shattered by this disease and says so. You are never going to catch me saying anything but the truth: it absolutely, positively sucks. No plus side, none at all.

In my letter to Ms. Nelson I described my indignation at her seemingly oblivious remark. I cited her compensation, almost a half a million dollars, compared to mine, now practically nil despite years of work and multiple degrees. I was livid and it came out in my letter. If she had so little true knowledge of people with MS, she had no business being in her position.

This Thursday, I had some sort of bug and for the first time in ages rested the whole day, actually napping through the afternoon. And while I was sleeping, who did I get a call from but Joyce Nelson herself. She implored me to call her back, which of course I would, I am not a complete cold hearted cow. (Hey! Stop laughing!)

I was truly surprised and impressed. And embarrassed. The only important call I get in ages and I am napping for the first time in about two years. We eventually caught up with each other the following morning and had an extremely positive and, I think, encouraging, conversation.

Ms. Nelson explained she had spoken with the reporter for at least an hour, so there was far more to what she said. And, to her frustration, the one quote was not expressing what she intended at all. She told me that she was already directing change at the MSS within the framework of a five year plan, especially to embrace individuals who had progressive forms of the disease. The more she told me, the more it came clear to me that her perspective and focus, the revamping of the MSS to be more inclusive and a reconsideration of the tradition of caution in the face of new modalities, did not meet the reporter’s agenda of an article purely about CCSVI. So Ms. Grady, at the Times, utilized a statement that was not deliberately misleading or misquoting, but one that fit what she needed in the context of her article. And it did fit, because people with MS have created a passionate groundswell of faith for this procedure. That was one of the main points of the story. Besides explaining what CCSVI was, Ms. Grady was demonstrating how frantic people with MS are, that they would chance an experimental treatment with side effects like strokes and potential damage from stents that come loose and travel to the heart. It was unfortunate that while Ms. Nelson’s quote served the reporter’s purpose, it did not serve her well at all.

I was frank and told Ms. Nelson exactly what I thought of the MSS. I told her of stories from fellow MS patients, about their fruitless and frustrating negative experiences with the organization. My own experience was of offering help rather than asking for it. I sent my resume and a proposal for speaking topics several times to my local chapter, which is less than a mile from my house. I never received any follow-up. Not even a ‘no thank you’. One of these offers was relayed directly to the President of the local chapter, who also did not give me the courtesy of any response. This man has since been promoted within the organization.

Ms. Nelson expressed being heartsick at these occurrences. I have to say, I was touched by her apparent earnestness, her pride in the MS Society and her expressed desire to make the organization something that embraces all people with MS. I told her at this point, the MS Society really marginalized anyone who did not fit their glowing, denial-filled stereotype. I believe that was hard for her to hear. It would be hard not to take criticism like that personally when you have been at the helm of an organization for an extended time.

I (of course, angling for a job; communication and management is my area, after all, and I would give anything to work again), gave my input: the MS Society cannot afford to be a cautious, staid and business–as-usual organization any more. It needed a shake up, it needed to reinvent itself into something more dynamic and original. If it was me, I would not accept that the Society was not extraordinary, fresh and constantly looking for new ways to do things. This is the only way to survive in business and it is the only way they can truly serve the needs of the people they purport to be there for. People with MS have to constantly reinvent themselves. So does the MS Society.

To her credit, Ms. Nelson listened to every word I said and expressed gratitude for my honesty. She was warm and gracious and generous with her time. She may have hung up the phone and said “Oy, what a nut!”, but I don’t think so. I got the impression of sincerity and a true desire to have the MS Society be a world class, cutting edge, risk taking concern.

So, at the end of this week of drama, where are we? Well, I still don’t have a longed-for job. My house is still crumbling. CCSVI is still a wildly hot-button, controversial issue, reviled by some, tolerated by others, and pursued passionately by desperate MS patients. The MS Society did some impressive backpedaling and posted a truly informative page on the theory and procedure, even to the extent of linking some material that ultimately is not terribly flattering to them and their delay in addressing the issue. I made a positive connection with an individual in a position of influence that I believe really wants to do good; someone who wants to be an ally in the fight against this loathsome disease and is proposing an organizational paradigm shift as part of that fight.

It will be interesting to see how this all plays out.

Crisis and Discord in the World of Multiple Sclerosis

There are many disheartening aspects about Multiple Sclerosis, even aside from the physical deterioration. One is that there is no cure. Another is there are no treatments that are 100% effective or safe. We have made some progress. Fifteen years ago there was virtually no treatment for MS besides the occasional steroid protocol. I say occasional because steroids are cumulatively dangerous and must be used judiciously, for only the most debilitating relapses.

There are five medications currently used to treat MS, but they are called ‘disease modifying’ agents, as that is all they do. They can delay or slow the progression of the disease, but not stop it. Even then, they are only effective a portion of the time, 30% to around 60% depending on the drug and when in the disease process it’s started. They are all administered either through injection or IV infusion and all have truly awful side effects, from continuous flu-like symptoms, to significant injection site skin damage to immune suppression that can result in a fatal brain infection, PML. That last medication is Tysabri, the drug that I receive through an IV infusion every month. The risk of PML and other deadly problems (liver damage, melanoma) increases with time. I am entering my third year on Tysabri. No one knows what happens after so long on this drug.

With these things in mind, consider the reaction to research by a respected and reputable Italian physician, Dr. Paolo Zamboni, who proposes a theory that some cases of Multiple Sclerosis are caused by blockages in the veins that allow blood to return from the brain to the heart. This condition is called Chronic Cerebrospinal Venous Insufficiency, CCSVI. Dr. Zamboni’s approach was a relatively straightforward one: try unblocking the veins and the result should be improved MS symptoms.

Lo and behold, some patients did experience just that.

So you would think that neurologists and news organizations and the National Multiple Sclerosis Society would have been all over this amazing, promising, minimally invasive new advance for an incurable, untreatable disease.

Instead, in the United States, from the professional community, there was the overwhelming sound of…crickets in the otherwise still and quiet night.

My neurologist said he had never even heard of this research when I asked him about it in January of this year, “but it sounds ridiculous”. I had to fax him the peer reviewed journal article by Dr. Zamboni. There was no public response from the National MS Society. American doctors who did know about Dr. Zamboni’s work were generally sneering.

While there was silence and/or downright hostility from the people we depend on to help us, in contrast, the community of people with MS rose up in an outcry of pleading for testing and treatment. Canada was on the forefront in North America, way ahead of us here in this country in at least addressing the possibilities inherent in this process.

Very slowly, in tiny, quiet pockets, and only due to patient activism, venoplasty and stent placement to treat MS began to be done here in the United States. My friend Marc, at Wheelchair Kamikaze, has been a major catalyst in disseminating responsible data in a readily understandable format about the procedure.

There was still nothing from the MS Society.

Next: Finally some exposure. And it gets personal, on two levels.

Fireworks. Celebration. And My Little Dog, Too.

I wrote this post as a submission to Grand Rounds, so it has info most of you are already familiar with but I had to fill in for strangers who might read it. The theme was "Celebration". I don't know if my piece will be chosen for this week, but the topic inspired me. :)

Fireworks. It felt like fireworks going off in my arm, hot, exploding white light.

I hit the cement patio like a meteor, my foot caught in a noose of loose wire that I never saw. My face was cut by my glasses, my hands were scraped and bleeding, as were both knees, but it was that arm where the fireworks were bursting repeatedly.

That was two years ago. I shattered my shoulder in that fall and have had three surgeries to repair it, including a partial replacement. But my arm still, for the most part, hangs painful and essentially useless at my side. And no one can figure out why.

Multiple Sclerosis is considered the most likely culprit for the lack of healing and constant pain. I have been diagnosed for five years now (a 50th birthday present!). And because of the mystery that is MS, an accident most people would have recovered from long ago continues to impact every aspect of my life.

MS has left that life, formerly organized, prosperous and going nowhere but up, in shambles. It cost me my career in executive health care. A widow and now unemployed, I cannot afford to maintain my beloved home, a charming Craftsman cottage, which is crumbling around me. Everyone I know is losing patience, constantly pressuring me to give it up. I am barely scraping by. I am a nurse and I have a Master’s Degree, but I am sewing to make ends meet, like something out of a 19th century novel.

So what do I have to celebrate?

I am still here, that’s what. I rise up from each blow and figure out what I can I do next. I keep reinventing myself. It can be almost a weekly occurrence, but hey, flexibility is my middle name. I am no Pollyanna. I do not accept that ridiculous deception that MS is a ‘gift’ that has helped me to stop and smell the roses. It is a cunning, vicious thief that has stolen so many things from me I cannot even make an inventory.

But what is left is precious. And that is what I acclaim. That I can continue to enjoy my beloved children, my adorable grandson, my wonderful, giving, loving friends. There is my sweet dog, who gives me unconditional adoration. There are the many rewards I get from writing my blog, such fun and so sustaining. There is the breeze that comes through my bedroom window in the early morning, cool and promising. A moment like that is a gentle fragment of bliss.

I soldier on. I will not profess it is easy to maintain, it's not, it's hard as hell. Some days, I can't get there. But I keep reasserting my maxim and working to internalize it. I read, recite, repeat: Life is good. Love it. Be grateful.

One Lap of America Gets Going

The race started registration on Friday, moving from South Bend, Indiana to Wisconsin and today in Iowa.

While I sadly am too mentally deficient to still figure out how the whole thing works, it seems like it is a great opportunity to see the country.

Here is the link:

One Lap of America

I know this is a big deal for car enthusiasts, not people like me who barely notice what they’re driving unless it doesn’t go.

But it is also a big deal because of my cousin Steve, one of the official event photographers, displaying the bumper sticker to raise MS awareness.




Go Steve! And thank you!!

MS Fund Raising Walk 2010

Three weeks from today, Sunday, April 18, 2010, friends , family and myself will be taking part in the annual MS Fund Raising Walk. It can be a fun day. There is a party atmosphere, we walk along the boardwalk and the company is great.

But it is an event I would gladly pass up. Because it is an annual reminder of the fact that I have MS and that this incurable disease has devastated my life.

Of course I am not the only one afflicted with MS. The walk is also a sobering reminder that as bad as it is for me, there are others who are even sicker. I can still walk some distances, although I need either a cane or a walker. There are people I know with MS who have lost that ability, so to a certain extent I am lucky. I do need a wheelchair for any length of more than a block or two. I hate it, but at least it allows me to get places.

MS has stolen much from me. It has distorted my relationship with my children, who are often required to be caregivers rather than simply my kids. The same goes for my friends, who are wonderful and generous and solicitous, but I would rather be a plain old friend. It has taken away the ability to do anything spontaneously. I have to always worry, are there stairs, where is the bathroom, will there be someone to help me if I need it? I was just laid off from my job. How much of their decision had to do with the fact that despite being one of their top producers, I was a very expensive employee as far as health insurance goes. It was a self insured company. My health care costs run in the thousands every month. I am a liability to a small business. There are wonderful jobs out there that I am fully qualified for intellectually and professionally. But I can’t travel easily anymore. I can no longer maintain the pace I demanded for myself as a department head. So my hard earned career, which was going nowhere but up, is now in tatters.

I am in pain all the time, either from muscle spasms or from haywire nerves. So I tend to do things less and less. Running an errand is a project. It is a struggle to even get dressed.

The disease progresses incrementally. There is no predicting how far or how fast it will go. Statistics say most people with MS will have their life shortened ‘only’ by about seven years. When the time comes, how much will I want to have seven more years? Or will it be sooner? As immobile as I am, will I develop a pressure ulcer? I am on a powerful and dangerous medication to slow down the progression of the disease. Will I contract an infection that my immune suppressed body will not be able to fight? Will my next stumble and fall (for I am always stumbling and falling) be fatal?

Here is the thing: it is crucial to know the ‘me’ in the preceding paragraphs is EVERYONE with MS.

That is why the MS Walk is so important. The NJ Metro Chapter has an excellent rating as a charity. Almost 86% of the money they raise goes into programs for those of us with MS and into research to find a cure. There have been so many developments to treat MS in the past decade alone. That is thanks to fund raising for research.

Whether or not you live in the New Jersey area, I would love for you to be part of my team. You can be a Virtual Walker, collect donations and never have to set a foot anywhere. Or you can come join us on the Belmar boardwalk. Or you can make a donation to our team. I would be thrilled by any of those. This is the link to my team page:

http://main.nationalmssociety.org/site/TR?pg=team&fr_id=13121&team_id=204925

And if all you can do is wish us well and keep us in your prayers, I am incredibly grateful for that as well.

Thank you to those of you who have already made donations and for your beautiful messages of support. I am astonished when someone calls me an inspiration or brave. I'm just me. But thank you for thinking and saying such lovely things.

Thanks to all of you for reading my blog. And thank you for anything you can do to support the MS Walk.

Please leave any comments about your own experiences with the walk or with MS. I would love to hear from you.

Hang on to your hats...

I'm on The Juice.




I have been dragging for months and feeling like death on toast.

(Like Death on Toast, a Play after Pirandello in One Act:

Marie: Waiter, I would like some toast please, with marmalade.
Waiter: I’m sorry madam, we’re all out of marmalade, we only have Death.
Marie: But I don’t care for Death on Toast.
Waiter: I’m sorry madam.
Marie: I really, really don’t like it.
Waiter: I am very sorry madam, it’s all we have.
Marie: (pouting) I hate Death on Toast.
Waiter: If I may be so bold madam, perhaps if you had not done something terribly wrong in a previous life, we would not be out of marmalade.
Marie: It is all my fault, isn’t it?
Waiter: I’m sorry madam, yes, it is.
Marie: Waiter, I would like some toast please, with Death.

The End )

My broken shoulder has been agony despite three surgeries to try to get rid of the pain. When I tell you I was ready to tell my ortho to just amputate, I am not kidding.

Last week Chris, my PT extraordinaire, had an epiphany and said "maybe your arm pain is referred pain from your neck?".

And I innocently said, well, the Transverse Myelitis caused a large lesion on my cervical spine.

Bingo.

Chris and I looked at each other. It was time for the steroids I hate so much and had put off for so long.

I called my neurologist and told his secretary I thought I could use a course of solumedrol. Dr.H is so awesome. He totally respects my assessments. No questions asked, it was ordered.

At any rate, the visiting nurse came Wednesday and started my IV. I did the first infusion. And within hours I started to feel unbelievably better. The sensation of having been pummeled all over began to fade. My legs and knees, which were so weak and painful that yesterday I was using a walker, grew stronger and steadier as the day progressed. But the best: my arm and shoulder pain, which has been unceasing for almost two solid years, through three surgeries, has gradually eased until I am absolutely comfortable tonight.

Everybody has different experiences with IV steroids. Sometimes the side effects are simply intolerable. They have the potential to do incredible cumulative damage to your body. I have found that they aren’t always effective. Last time it wasn't at all. So I am very careful about choosing it as an option. This is my fifth course in five years, but the last one was a year and a half ago. I figured that was a long enough break. I was desperate this time.

When I went to see Dr. Wonderful for a surgery follow up on Tuesday, I was trying so hard through the whole visit not to cry. My arm is completely healed from an orthopedic standpoint, he told me. There is no reason for the pain, bone wise. And in my head I am thinking “omg omg omg what am I going to do?!?!” Fortunately, he wasn’t throwing up his hands. He is wonderful. He carefully read the PT report about the neck lesion and thought the theory had a lot of credibility. “That’s where all the nerve bundles originate.” He referred me to a pain management specialist. He said “We’ll treat this as a team.” Dr. H.’s secretary is faxing over as much info about the spinal cord damage to the pain guy as she has. What more can I ask for?

While Dr. Wonderful was writing prescriptions, I had nothing to look at but either him or the floor. Of course, given that I have the maturity of a ten year old, through blinking away my tears, it certainly doesn’t hurt that he is cute as a button and dresses impeccably. I was mesmerized by his gorgeous socks and idly wondered if he threw them out after each wearing. Because nothing that pristine could come out of the washing machine. Were they silk? Did his wife wash them by hand? Good thing he wrote fast, who knows where else my mind could have wandered.

By the way, now that you know about his socks, I have permission to use his real name. For the past almost two years I received the most incredibly optimistic, compassionate and skilled care from Dr. Brian Torpey of Tinton Falls, NJ. His real name is Dr. Torpey, but he will always be Dr. Wonderful to me.

So after two days of Solumedrol I have slept a total of five hours. By tomorrow I will be a perpetual motion machine. I will not be able to stop talking, or writing, as you can see already by the length of this post. I am walking without a cane. Nothing hurts. Yesterday I got washed, dressed, made up and was out the door with a cup of tea to Physical Therapy in twenty minutes flat. On Tuesday it took me almost twenty minutes just to wash my hair in the shower.

Unfortunately, next week I could crash and burn. But for these few days I am giddy with the sensation of normalcy.

Jackie's Month

Not many people love January. It’s unpredictable, it’s cold, it’s blah.

For me, since I found out I had MS, January has been Jackie’s Month.

Jacqueline du Pré was born in January 1945 to a musical family, but of all of them, she was special. She was a genius as a cello player, a prodigy. Her passion and unique style raised eyebrows but made classical music cool in the late sixties.

Here is Jackie playing Elgar, conducted by Daniel Barenboim, who was her husband. It is magical.



(for e-mail readers: http://www.youtube.com/watch?v=L5C99JyP2ns)

She found out she had MS around 1970, when she was 25. By the time she was 28, she could not play anymore. That fervor, the contagious delight of making music and the excitement she generated doing it was done. She died when she was 42.

Where she was:



Where she went and where I’m going:



I am excruciatingly aware there are other bad things that happen to people. Because they’ve happened to me as well. I lost an eye in an accident at 4. I had to have my shoulder replaced because of a fall. There are other terrible diseases out there.

So I say this for all of us. Life is like a tunnel. There is before diagnosis, behind us, where there was some light. And then there is after, ahead of us, dark and unknown. It is the unknown, along with the daily struggle to dress and walk and bathe, that causes a howl of injustice inside your head. A shriek of grief so primal, you can never let it out.

This clip from the film about Jackie and her sister portrays it perfectly. She looks down the tunnel of her room, staring into her past life, represented by the dress, which further taunts by moving effortlessly. This few minutes of film captures what it feels like every time you remember once again you have Multiple Sclerosis.



(For e-mail readers: http://www.youtube.com/watch?v=TpN41toUv-w )

A Shameless Plug

Tomorrow is the 21st Annual MS Walk and Team Cooper is taking part for the fourth time.

Normally I am a total cynic about things that are MS group related. Call me crazy, but I have a Bad Attitude towards the disease that has devastated my life. It is one of those I-don't-want-to-belong-to-any-club-that-would-have-me-as-a-member things (with apologies to Groucho). Granted, there are worse clubs to belong to. But this one is pretty sucky.

However, the MS Society does do a lot of good work, both in directly helping people with MS (they loaned me the power chair I use for the walk, cheerfully and without question) and in supporting research. The walk is my tiny way of feeling proactive. And, believe it or not, it is actually fun. We walk on the boardwalk, we have a great group and it a terrific way to feel like we are doing something positive.

In my dreams, more than anything, I would love to have everyone of you incredibly wonderful people who read my blog come with us. To meet you all in person and be able to talk and laugh together would really be a thrill. Sigh. I know that is not possible, but how much fun would that be?!?!

Although, anyone close enough to Belmar is more than welcome!!

Barring that, any donation you could make to the MS Society for our team would be humbly appreciated. You can connect to my page here. We are more than halfway to our goal this year. Last year we exceeded it. I would love to be able to that again!

But finally, if you could just pray for us or keep us in your thoughts, that would be the best thing of all. Pray that we have good weather. Pray that we reach our goal. Pray that we find a cure for Multiple Sclerosis. Pray for everyone who has to deal with illness and hardship.

Thanks everybody!!!

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:

Wishes

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 floor.
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, appointment, 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 were 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 without 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.

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!!!!