Category Archives: Blogroll

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Of Course Amy Can Ride a Bike~

When I was a child, my mom read the Astrid Lindgren book “Of Course Polly Can Ride a Bike” to my sister and me. It was a story about a little girl who was not old enough to consider a bike sans training wheels and on her birthday she “borrowed” her neighbor’s, only to crash it at the bottom of a hill.   My sister and I would often use the dramatic quote: “Blood on my birthday!”…as it seems appropriate in so many of life’s situations. 😉 When I was pregnant with Madeline, I bought her the book so that she too could reference this moment and share a wink with her Aunt Leslie and me.

Today, after weeks of trying to adjust to the reality of myself in a scooter for the longer jaunts that I am incapable of walking, I finally decided I would try to ride my bicycle. With compromised balance,  dizziness, and muscle strength that won’t allow me to walk more than 10 blocks I had avoided it for over 5 years and had good reason to believe that it would not be on my plate of options this coming season. In fact, when Keith was cleaning out the garage I didn’t even recognize my bike. It wasn’t the old friend that I missed over the years… more so the stranger I didn’t want to admit I knew. It’s amazing how the mind copes with loss.

So, today (Sunday) Madeline asked if I would ride my bike with her and Daddy.  I said apprehensively that I would try. She promised she would teach me how to do it again and so we took the Mongoose off its high hooks and reintroduced it to gravity. As Keith pumped air in the tires I asked Madeline if it was strange for her to have to teach her mom these things. (Madeline often exaggerates her cuts and bruises, feigning sprains and possible broken bones in a way that recognizes how she observes my limitations that don’t go away) And she said “No Mommy, its not strange, I’ve been with you a very long time and I’m used to it.” And while Madeline has taught me many things, I knew that this experiment would stand out. I told her not to be too disappointed if I couldn’t do it, it would be no reflection on her abilities to teach. Of course I was really preparing myself – knowing that if I couldn’t do it, it was no fault of my own. Though I knew the disappointment would be great- and I feared it.

So, the bikes were ready and Madeline described how I should hop up on the seat and start pedaling. This foot goes up and pushes, while this foot goes down. She was clearly enjoying her role. Starting and stopping would be my greatest challenge, if in fact I was able to achieve balance required to maintain the motion.

And I did. And it was magnificent.

Madeline felt proud that her coaching was so effective and I basked in my ability to move faster than I had in recent memory on my own action. With each stop and start I found new confidence and the uncertainty pushed to the ground by each successive pedal. We rode to Edgemont Park and circled the perimeter twice, and though I was ready for a third we opted to use the energy for the ride home.

It was a curious feeling to cover so much ground and only be reminded of my limitations when I stopped. Getting off the seat my dizziness returned. It was almost alarming because for those moments as I propelled through the park with my husband and daughter, MS was incognito. I was in a public space acting out a part seamlessly…with no one knowing the truth but us three. What bliss.

I’m looking forward to taking this experience to Kessler when I’m assessed for a scooter. My limitations can’t be understood in a first glance. I can’t be pigeon-holed as a person who can’t walk and needs a motor to go the distance. Although at times it may be true,  I’m also the intrepid woman on her bicycle who blends in beautifully with her surroundings while enjoying the light breeze blowing past her face early on Sunday morning.

Thanks for reading~

ag

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Find Me In Fatigue

Fatigue is hands down the most difficult MS symptom to experience and explain. While all invisible symptoms defy description, finding words to convey the feeling of this type of exhaustion is not easy. Because everyone thinks they understand “being tired,” it is particularly helpful to draw a line of distinction between that and this experience. So I will try to do that… words are my greatest ally, after all.

When I was first diagnosed in 1988, long before any disease modifying drugs were available to treat MS, I knew full-on fatigue. This neurological experience isn’t anything like being tired. It consumes you in its grip. It’s long fingers wrap around you and suffocate your being- robbing you of your sense-of-self. Each and every cell struggles to endure and with that, is a disconnect from all that defines you. It lives in you no matter what you do. It doesn’t even require physical movement to take hold. Just sitting and reading a book or playing scrabble- any level of concentration would be fuel for exhaustion. My memory of my time with fatigue is not one I care to revisit. It was a time with no hope, filled with fear of what role this thief of my personality would play. Trapped in side my worn-out body, I could not imagine what would become of the effervescent me.

And to make matters more challenging, I was surrounded by people who tried to tell me that they “get tired too” making me more isolated and angry than ever. Living with MS is a tough ride, but having to constantly explain yourself, defend yourself even, makes it even harder. Copaxone has allowed me to live life mostly free of fatigue, so I was caught completely off guard last Sunday when it reared its ugly head.

That day I pushed myself hard. Not by working out, or riding the Lifecycle at the gym of which I wish I was a member….. just by going to the local art fair searching for that elusive hand-crafted mug. Walking around Art in the Park (ing lot) at the Montclair Art Museum was enough to do me in.

But let’s talk mug… a welcomed distraction! This mug of mine needs to be special. It’s the one that feels perfect as I wrap my fingers around it and support it with my palm, warmed by the contents. The one that deserves to bring that ideal cup of java to my anxious lips. Yes.. I wax poetic here. I love coffee… and I need my perfect mug to have and to hold. My last victim found its fate as a hippity-hop was flung across the yard and tore it from my hands, tragically taking that rubber vehicle’s life with its own. The shards of mug sliced through it in a feat of physics I would love to replay in slow motion. A sad day for both me and Madeline. 😦

So, I excitedly arrived at the fair, the very one that brought that perfect predecessor to my home. With walking stick in hand; daughter, sister, nephews and parents near by, I descended. I had it all planned out. I would do a quick jaunt to assess where my new coffee vessel would be adopted and rejoin the family. Of course in spite of separating myself from the group, I couldn’t quite achieve the speed and agility I hoped for, and couldn’t put my finger on the ideal mug. I ran in to the posse just in time for shirt-painting, tie-dying, music-listening, food-wanting, gift-buying, bathroom-going, arm-tugging, constant-whining and thus my chances of finding my soul-mate-mug were diminishing by the second. But my family was on board. They knew how important this was. They each were given a description of said item and an assignment of what to do if they found it. Cell phones are very important in this type of mission. Phone messages with pics of mugs from across the park were employed to avoid excess travel! Anything to shorten my trip was appreciated.

Finally I found one and though it wasn’t perfect, it was close enough. I bought it and took one more trip with Madeline to get her friend’s birthday present, and then a second stop at the bathroom, and finally to meet the rest at the gang at Applegate Farm stand for that much desired-dairy-destiny. (can’t resist hyphenated alliteration!)

Unfortunately my effort to get there was thwarted by the entire physical breakdown of my overly-taxed body. To the outside observer I must have appeared to be a cast member of the Night of the Living Dead; dragging my leg, lunging myself forward to find a momentum. I suppose holding a walking stick and Madeline’s hand helped to dispel that image. But from the inside it was all black eyes and decaying body. I dragged myself to the chair that all ushered me to, and sat.

And when I got home, I sat. Unable to think or even be… stifled under the greatest of exhaustion that compromises my entire self. Sleep and depression weren’t far behind…. a delirious slumber filled with the fear of what I will be when I wake up.

Luckily with Copaxone fatigue is only reached when I push myself far beyond what is reasonable- it is no longer the MS symptom that underscores everything, found after walking 20 feet. Instead it is only found when I expect to be able to do more than my body will allow. Usually that is a lot more than 20 feet, but it falls short of a trip around a festival, a museum or around the park. (and you can forget the Bronx Zoo!) You’d think I’d know that line of demarcation by now… maybe it’s my optimism, maybe denial. Whatever the case may be, I often find myself in this zombie like state disappointed I can’t do something that seems like a “no-brainer”. And thus, I am left with the realization that there is a solution for these scenarios- and it’s that next step that I’ve been avoiding for some time. Can a scooter be as empowering as my walking stick is? I hesitate to type it, but I believe I know the answer.

When I awoke I realized a change of scene would do me good. So I called my neighbor to join her for a coffee. Her kitchen is adorned with mugs that feel great in hand and reinforce this journey with a line drawing and simple message – because in spite of it all Life is Good! That and the great conversation she always supplies is just what the dr. ordered, Thanks Susan! 🙂

Thanks for reading.

ag

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A pregnant pause…

Deciding to have a baby when you are living with MS can be a tough decision. Or not. If you’re like me, you know you want a baby under any circumstance. Whatever the case may be, I hope that by sharing my story, I can provide what I longed for when my husband and I were making our plans; that being a positive experience to support the decision we had already made. While everyone has a completely unique and unpredictable  MS path and all-of-the-above is true for how any pregnancy might play-out, each telling offers an inside-line of possibilities.  Here’s mine.

Everything about planning to have a first baby is filled with question marks even without MS. How long will it take to conceive? (How to take the reckless bliss out of marital recreation) What will being pregnant be like? (Puking, constantly pee-ing, and walking like Frankenstein’s monster….)  Will it be a smooth delivery? (How the HECK are they gonna get that baby out of me!)  and How will it change our lives? (Will we ever have reckless bliss again?) When MS is part of the equation, the question marks are bigger, bolder and have potentially long term implications. What about all of the meds that make my life livable everyday? If I don’t have bladder control now….? Will my MS be worse after I have the baby?  Will I be able to care for a new born? a toddler?  a teenager…? Okay, wait a minute, no one should be thinking about a teenager when considering to have a baby…. although it may have a significant impact on rising populations! ☺

The year was 2000, and there were a few things I had decided already about how my pregnancy would go – I would stop my Copaxone while trying to conceive- although the prospect scared the *!#@ out of me. At that point I had been on it for 7 years and it was doing remarkable things to improve my everyday with MS. There wasn’t much that was known about the effects of the drug on pregnancy and I wasn’t taking any risks. Adding to my comfort in this decision was that once I got pregnant I would likely feel much better than I do normally. It is known that the immune system is naturally suppressed during pregnancy to allow for a foreign entity (ie. the baby) to coexist inside you.  And so, the said immune system no longer randomly attacks the precious myelin that keeps our neurons functioning healthy! (note to self: if true, explore surrogate motherhood as vocation!)

I was afraid of what my MS would look like without Copaxone or the benefits of a pregnancy-based suppressed immune system. So it was the “in-between time” that had me worried. With the over-speculation and hyper-assessing I take to anything; I read, and wrote and thought. And talked. And talked. And talked.  For me, rehashing and reconsidering any and all possibilities gave me a sense of control over any situation. Silly mortal!

So I stopped the Copaxone, (My neuro told me it would take no more than a week for it to be totally out of my system) and immediately starting working the ovulation predictors. (Say goodbye to spontaneity)  I wasn’t going to waste a moment. I knew that the quicker I got pregnant the better.  It’s a crazy game trying to enjoy the process (if you will) with so much riding on it! (if you will!) Luckily it only took us three months to conceive and my health didn’t falter.  Check.

What came afterward was all good. I had a wonderful time being pregnant. Okay, maybe that’s slightly sugar-coated. But the truth is as they predicted my immune system took a break. And all my cells came together in their pregnant bliss and rejoiced! My energy was up and I could walk farther than ever. Of course I dealt with the normal joys of pregnancy: nausea, headaches, heartburn and the inevitable transition in to the incredibly enlarging woman. But all paled in comparison to the normal MS symptoms that I had become so accustomed to.  What really tickled me at the time was that I was treated in such a way that would be very helpful in my every day life with MS. I was offered a seat wherever I went and always made aware of the closest bathroom. We went to see Chicago on Broadway and I was escorted to a super-secret bathroom in the mezzanine. Wow! I immediately began to consider ways I could develop a prosthetic pregnancy suit for just those scenarios in the future. Think of the possibilities!

When the big day came I delivered Madeline after 6 hours of labor, 2 of which were “hard” then ultimately cushioned with the once-removed feeling of an epidural. (Someone is having a baby here… though I’m not clear on who! ☺)

Then we got home and wasn’t so easy. Recovering from delivery and having to learn how to do EVERYTHING is challenging for everyone. The breast-feeding, the diapering, the clothing, the bathing, the burping, the sleeping or rather the not sleeping, all created a veritable tornado of learning and uncertainty. Luckily it was cemented together with the unbelievable love you can only know in your baby.  Keith and I spent all day and night in that first week marveling at our perfect little person. Nothing could have prepared us for that emotional magnitude. This couldn’t possibly be what everyone else is doing!

And while I was coping with post-partum depression and fear I would not be able to physically do everything a new baby required, we found the support we needed and tried to be patient that the rest would come.

16 days later was 9/11.
Whatever feeling of parental mastery we had gained shriveled in our fear of the world we brought sweet Madeline into.

• • •

When all is said and done my greatest hurdle was emotional. I never had the MS relapse that was often sited in the “literature”. And though I had challenges that were uniquely MS, none were above and beyond my ability to cope at that time. The depression that began after Madeline was born, merged with the anxiety that we all felt after that September day.  And though my pharmaceutical cocktail continues to include ingredients that address these issues, I can’t help to wonder what that graph would have looked like had those two events been further on the timeline.

When I began this entry, I thought it would be an opportunity to share my experience with pregnancy and childbirth from an MS perspective. What I hadn’t realized was that irrevocably intertwined in my (and Keith’s) most precious life experience is the residual impact of that tragic day.  It’s impossible to think of one without the other and so much sadness and resentment surrounds that pairing.

If anyone reading has questions about having a baby with MS — please feel free to contact me and ask the details that didn’t make it into this final version. Right now, I’m carried away in the other place this writing took me, trying to weed out the memories I want to magnify and lose those I long to forget.

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linda p. revisited

With news of cancer returned, I cope the best way i know how.

Revisit, reread, remember….re-

for linda p.

November 10, 2008 at 11:02 am

Back in college we got rings
at the mountain we were branded with patterns
linked across state borders and through time
a friendship that has always endured

With a bump in our cosmic road
a matching hope stone
smooth and gray, a perfect fit in our palm
transferring heat and energy

First we are the source,
it now belongs to the stone
and is offered back
as we feel it and turn it in our hands,
the hope emanates and surrounds us
it pulls us through this time of challenge

and I’m with you,
through every pace,
at every moment

Though at times our feet might drag-
(mine more than yours)
we will ultimately skip
and be stronger because of it

There is so much strength,
so much power in you
its this energy that sustains
those you love and who love you
like the heat of that stone

I will never stop holding it, restoring heat
knowing that you are receiving energy
empowered by our friendship
that defies time and space

We will move through this
and skip for years to come

you have all my love,

amy g.

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indelible

lasting marks
hidden, though always present
the less prominent, often
reveal unexpectedly

evidence,
reminding
what is, was
my print

marks that prevent
and inspire
a relapsing reminder
of the who
that was, is

finding a self
unmarred, uninterrupted
uninteresting
un…

empowered by
memories
recognizing the w(hole)
marrying what was, is
complete-ing

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I can’t play hopscotch

This week I’ve connected to a dear friend, I haven’t known in two and a half decades. And with this re-connection I find myself addicted to a Penseive-like journey that has revealed immeasurable emotions in addition to an opportunity to become reacquainted with my healthy young self. With remember-whens and photos of me that I’ve never seen, I find myself immersed, unable to look away. This need has taken on addictive qualities that are making it difficult for me to get back to 2009.

In the midst of this journey, I went outside to play with Madeline. With  joy easily found in this early spring day, we combed through the list of things she’d likes to do- those special things that she hasn’t done during the cold winter months. And while her usual outdoor playmate worked diligently inside, we searched for what I can do instead. (tag- no, obstacle course- no, jump-rope competition-no, hula hoop-no.) And though I was able to talk her into drawing on the drive-way with last year’s nubby chalk, it clearly wasn’t on the top of her list.

We held our noses because a skunk sprayed our car last night, and I tried to engage her with a drawing of the culprit, though it came out looking like a turtle. (nubby is an understatement-and you may not have noticed but a skunk has some pretty fine features)

“I know mommy, let’s draw hopscotch and we can play that together!” “Ok” I said, just assuming I could. It’s like a language one never forgets, right? And while she was bending and turning in ways that would evoke dizziness in me, I stood by and serenaded her.

“What a day this has been, What a rare mood I’m in…why its almost like being in love”

“Mommy, I don’t like love songs, sing something else.”

“Okay,” I said, “how’s this… I’m here, to remind you of the mess you left when you went away.. (an inside joke that only I could appreciate)

“No.” she said blankly in her cute sarcastic way (she is definitely my daughter!)

So I launched into the songs I sang to her as a baby, most notably Madeline Beatrice Adams-Gurowitz sung to the tune of John Jacob Jingle Heimer Schmidt. And we laughed as she finished the hop-scotch board.

With the joy that is reserved for single children, she went first, and second, and third. ☺ Then it was my turn. I grabbed the stone with optimistic confidence and started on a task that was at one time as natural as breathing. And though it was clear with my first hop,  I pushed on. As I jumped, I edited the film in my mind, cutting between my yearly neurological exam and each hop. A visualization that is so strong, I will remember it as if the scene played out in exactly that way.

When I was done, I sat with the realization that this simple little game is exactly what I can’t do. So I watched her for the rest of the time… counting and clapping. And while I’m sure she enjoyed the attention just the same, I withdrew to that faraway place that has consumed my last 9 days and that picture…. lying on my side, with head in hand and the classic smile that lives with me today. It’s no wonder that I’m stuck in those early years with my dearest friend from a healthier time; a me that feels simultaneously so far away and so close. I don’t want to come back. Yet I know that if I don’t find a way to absorb this feeling and make it my own, in my current day… I won’t be able to laugh with Madeline on the driveway singing songs that are mine (Alanis) and her’s (…her name is mine name too).
ag

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There’s Got to Be a Better Way

A few years ago Madeline, Keith and I enjoyed watching Little Bill together. It is a gem of a show created by Bill Cosby that is very entertaining, creative and educational. All the things you would expect when touched with Cosby’s genius. Keith and I revel in those shows from an Instructional Design perspective and we love to be involved in that process with Madeline, using it as a tool to teach her how it applies to her life. She is always an eager student. In one episode Little Bill was trying to figure out how to accomplish a goal (the details escape me) and he kept repeating “there’s got to be a better way” as his mind moved through the creative process of trying to determine how to make it work. That stuck with me and I use it for Madeline, as well as for myself.

Living with MS requires me to be creative. I need to incorporate new symptoms in to my life regularly, while maintaing the pile that already exist. Sometimes that maintenance is streamlined, but often there is a log jam when something is more difficult. It requires a pause and reboot.

So here I am, announcing a pause and reboot.

I’m trying to get back to my yoga routine that ended in December of 2007 when dizziness came to challenge me.  I’ve tried to reincorporate it in different ways in this past year and a half always gravitating to abdominal tightening, I found myself drawn to the very thing that makes me most dizzy in my effort to remain trim. (Why am I soft in the middle when the rest of my life is so hard?) 🙂  Reboot.

This is not about physique. I’ve always struggled with the fact that I can’t work out the way I want to; to be as trim as I prefer. Society’s pressure doesn’t passover me just because I have MS marked on my doorpost. (little pesach humor there!)  But that isn’t what Yoga is for. It runs much deeper than that.  

So last Tuesday I went to my first Yoga class. The MS Society was sponsoring this MS Yoga class for free at a church down the block from me. I couldn’t find any excuses for not attending… it was convenient on every level. So, I went. Somewhat fearful of what I was going to be exposed to, in terms of the MS variability, but forging ahead knowing that this was really an old emotion, and 20 years into this I can handle it.  My ego was no longer that fragile, and I need to update my files. 

And I moved through the expertly guided positions (many of which were familiar to me from my home video) slowly and deliberately. The woman who was leading this session Diane Speer, clearly had experience working with people living with MS. Her expertise was immediately evident.  She started us all in an easy place… and we each worked our way though it.  But in spite of my careful effort, I knew when I stood up that I hadn’t been successful.

And here I sit, 4 days later- dizzy when I move my head, clutching my stick, staying home from work and using my energy in stillness. Luckily the stillness works for me and I feel ok when I’m at the computer.   So, while some would give up on this yoga thing, I won’t, because I know there has got to be a better way. And Diane is going to help me crack this. (thank you Diane!)  We’re going to craft a routine that provides the right movement, both inside and out– neurologically, muscularly and emotionally. Until then, I’ll just sit still.

and I’ll keep you posted.

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MS Aware… ness

This past week  was MS Awareness week. It’s this week that all of the organizations dedicated to eliminating the disease and supporting the people who are living with it turn up the volume so the rest of the world can hear.   It’s got me thinking about the word- Aware.

I recently received an email from someone who was introducing themselves as so many do – with her diagnostic tale. She described her version of MS in reference to how it has progressed to a point that she is aware of it everyday. I immediately paused to consider.  It’s an interesting way to establish one’s level of disease impact.  So I try it on.

I was diagnosed at 20 years old with my identity still in its pupa stage. As a result MS is an integral part of me. The inseparable fiber of who I am. No matter what my symptoms are on a given day, if I’m breathing I am aware that I have MS. Of course my symptoms make it next to impossible to forget, but it’s much more than that.

It may be because part of my forming sense of self as a young woman was with the  knowledge that my future would require an ability to cope.  And because there was no way to determine what I’d be coping with, in both the immediate and distant future, I needed to learn to live with the not knowing. I think that was the most difficult aspect to wrap my head around.

In the beginning it showed itself mainly as fear. And not in the productive way that forces you to strategize and plan; but in an insidious way that derails everything. The kind of fear that takes every moment your mind is at rest and fills it with all the worse possibilities in scary detail, often with a dramatic score. (I was in film school after all- theatrics at the ready!)

But as the years went by this fear turned into something else. It had cadence and rhythm. What was imperceptible while in the midst of it,  is crystal clear in retrospect. And while I’ve struggled to come up with words that effectively describe it,  I  immediately recognize it in others who have been living with these two letters for a long period of time.

It’s a verve that underscores our coping. A long history that informs and ultimately empowers our uncertain future. Maybe I would have been that person no matter what my life map looked like.  Either way, I enjoy the resilience that I’ve earned. And relish in its constant application to what MS and life in general throws my way.

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MyMSMyWay~ Refine and Relaunch

A number of months ago I wrote about MyMsMyWay.com. (previous post link here) The website that provides valuable information for people with MS who use their computers. (I trust most readers of this blog fall in to that category!) This collaborative of Microsoft, Bayer and the National MS Society sought the counsel of 8 individuals with MS (myself included) from around the country to guide the production of this site. In doing so, they have come up with a site that not only has a wealth of information, but also considers our experience in its design. Their most recent update makes it easy to find information about how you can resolve challenges that people with MS may have working with our computers. The new and improved version provides a more user friendly interface and considers some of the principals of MS SoftServe. (ie. people like to get information indifferent ways-as seen in a listen to feature of the site that will be added soon.)

So take an opportunity to check it out. I’m quite sure that you will not only find helpful information, but also a resource to rely on as your experience with MS and your computer may change over time. To get a complete idea of how your individual needs can be met, start with the snapshot tool. (You can get there by clicking on a picture of me and my daughter.)  If you have any thoughts you would like to share, you can do so on the site in the “About us” section. Or feel free to talk about your experiences and or needs here, I have an inside line. 🙂

ag

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And the other foot-drops…

On the way to see my beloved neurologist last week I was thinking about my decision in December 2007 to use a walking stick- not an easy one to say the least.

For quite some time I had been tripping over nothing- though I never thought too much about it. I was branded a klutz at a very young age and always chocked it up the tendency to a flawed gene I had inherited.  So when concerned family members asked me if I had considered using a cane- I defensively claimed that if I needed a stick, my doctor would certainly have recommended it. And thus the phantom obstacles continued to block my path, with many a bloody knee and an embarrassed moment on NYC subway system.  I glossed over the absurdity of this all-to-frequent occurrence with a bit of performance art.  Brief moments of flight followed by random explanations announced to everyone and no one. Look that sidewalk is uneven! It’s these shoes! These practical rubber soled shoes tripped me.

And so it went unchecked until December of 2007 when the dizziness  arrived, an unwelcome guest who would never get the hint. What I hoped would be temporary became a new way of life. It was my husband’s inquiry that made me realize I would need to reconsider what I’ve assigned as my neurologist’s responsibility. Keith’s question has more power than my original family and it forced me to realize that my life requires another “foot” on the ground- a tripod if you will to help me navigate the concrete jungle as well as the bumpy green suburbs.

This need was reinforced when I visited with the vestibular neurologist who when testing my stability marveled that I would consider walking without a stick.  Placing his own stick near his desk reminding me of Joe Gideon’s exam as the doctor and patient both had cigarettes hanging off their lips hacking away during his physical— only less ironic. (see All That Jazz)

So, where was I? Oh yes- my doctor’s visit. After the routine performance of move this, touch this, walk like this, tell me this- my Dr. said,

“What are you using a cane for?”

“To compensate for my foot drop” I say.

“Well foot-drop doesn’t show in your reflex test or in your walking test.” he said

“But it does show when I’m kissing the sidewalk!” I hadn’t thought quickly enough to say.

So I’m leaving his office wondering why my Dr. would question my decision – one that was very difficult to make- and serves an important purpose in my life. Could he have said “Tell me, why have you decided to use a walking stick?”

I know, I know. Dr.s treat diseases and  symptoms while nurses treat  people. How is it that they can’t be housed in one person? Is there is no time to teach it in those advanced degrees?  And to think that I thought that my Dr. would have recommended it, if he felt I needed it. In addition to having this disease, and living with the constant symptoms and their physical/emotional effect- I have to be my own advocate. Any large company would view that role as a conflict of interests.

Hmmmh. I miss Linda Morgante more than ever.