Tag Archives: MSLOL

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Please Don’t Hate Me!

Dear Blog,

Please listen to me. I wouldn’t cheat on you. You are, and always will be my main squeeze. I mean c’mon, we’ve been so close since we first met in 2007. And we have had so many LOLs together. I realize that I haven’t been around much lately, or answered your emails. It’s just that I’ve been busy. I know, I know I’ve always had plenty of time for you. And okay, facebook had distracted me for a while, but I always come back to you- sharing my deepest emotions, ones that I couldn’t tell anyone else. You’ve been such a supportive part of my life and that means the world to me. No, I’m not breaking up with you. It’s just I’m hoping that we can see other people.

You see, I’ve started seeing Health Central’s MS Site on and off. While nothing compares to you, there are some things I need to say there. And yes, the giveback there is helping my non-profit MSSS come to life. You remember MS SoftServe, right? We’ve spoken about my connection there many times. I promise that I will reserve the words that are closest to my heart for you. And just to prove to you nothing inappropriate is going on, every moment I spend there I promise to give you a link so that you can see for yourself .

There is nothing to be threatened by, so I hope you are okay with it. And while I won’t be around as often, I will always to come back to you. In fact, I have this great idea in my head right now. It’s about MS and exercise… I debated where to write it and when push came to shove you won Blog. You can expect me back with that one soon. But in the mean time, check out this one I just wrote at Health Central. And thanks for being so understanding!  You’re  ’da best!

With a pixelated love found nowhere else on the Internet,

Amy

P.S. incase you didn’t know Blog, the word “wrote” is a link. Incase you missed it: http://www.healthcentral.com/multiple-sclerosis/c/93851/109609/home

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Hear the voice behind the words~

I was recently interviewed on blogradio by Rae Edwards of SwaggahBoi RaeDio. Please take an opportunity to listen. Put it on your ipod to hear while you commute… mill about… eat … sleep… think. Wherever it fits!

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“The Stony Limits Do Not Hold Love Out…”

Two weeks ago two friends went shopping. They had formed a bond around this happening 20-years ago when they first met. Back when they shopped for treasures on their college budgets in unexpected places. What they found was inconsequential. It only served as goalposts of their time together. This ritual provided a space where they shared conversation, laughter, ideas, each punctuated by the “shzing” of hangers sliding across racks and calls from the next aisle to “checkout” the discovery. Value City and local thrift stores were the inauspicious places they found these looked-over gems or rock bottom remainders that no one had recognized for what they were.  Those shopping trips were the comfortable dance to all the best songs they played over and over and over.

The girls are now women; mothers, wives and professionals.  They don’t have to reach too far down to find the college girls they once were together. Both have managed to keep that self close by. So when they see each other no matter how much time has passed since the last visit, they find the understanding and love easily accessible, below the skin nuanced by the years they’ve lived since. And as they shopped two weeks ago, they fell into the grooves established decades prior. Though this time it was different. This time they both provided more than memories and a comfort of a shared history. This time they needed each other for physical support as they went through the motions of their historic ritual.  While one endures the disease she’s had since they first met, the other faces a new, more challenging diagnosis that shakes the ground they have always felt secure on.

• • •

Finding a way to absorb the reality of Linda’s cancer has left me immobilized… yet flailing. I’m desperately trying to get my arms around all that she is and what she means in my life. As the weeks have passed I have found the place deep inside that only she can touch and I’ve rested there. Within that space has come an outpouring of emotion and words in an unstoppable flow. It’s the soundtrack of our 20-year friendship – a melodic hum that exists beneath everything. And while my feelings are often beyond description, I am taking this time to honor her and what we share. I know it will empower me from now on as I continue to read and reflect on this most remarkable friendship.

So here goes…

I met Linda P. a few months after my MS diagnosis. Tumultuous is not a strong enough term to describe the few years leading up to the Fall of 1988.  In short, my parent’s sudden divorce and my mom’s move to Florida led me in desperation to an abusive boyfriend. Escaping that, I moved to Maryland to attend the state university at College Park and after three semesters, I transferred to a different campus in search of a something more meaningful both academically and personally. I was getting used to making these big decisions on my own.

That summer before I started at the new campus began with my 20th birthday and the out-of-nowhere diagnosis of Multiple Sclerosis. It was a shocking blow to my fragile and forced independence. But in spite of my fear, I continued on by myself looking for a community to be a part of while finishing my film degree. Just a few weeks after I moved to the Baltimore suburbs and started at the UMBC film program, I found a group of people who felt good to be around. Just as the cream rises to the surface, so did Linda. It quickly became clear that we had something special. You know how sometimes you meet someone and they match you in ways you didn’t know possible? Well that was how it was with Linda. And as I search for descriptors to convey all that we have, I get lost in the reverie of everyday moments and how it felt back then to have her energy with me all the time.

Trying to describe a friendship in words is not unlike trying to sing a painting.  I’m not sure if it was her spirited way of appreciating every moment that drew me in or her adorable personality.  At this time, making new friends and meeting new people wasn’t easy. I was unsure and nervous about what MS would mean for me and this seemed transparent in my insecure presence.  Many people couldn’t deal with this uncertain reality of mine and were obvious in their apprehension. But Linda never shied away. She clearly accepted every part of who I was in ways I could not yet do for myself. She gave new meaning and comfort to my world.

Continue reading →

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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.

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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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The MS Tapestry

I recently read a beautiful piece written by an MS blogging friend about her diagnosis. She drew a masterful allegory comparing her diagnosis to her son’s coming of age Tai Kwan Do blackbelt test.

It got me thinking.

Not only about my own diagnosis, but also about the richness of everyone’s unique story.  What a fabric we weave in sharing these stories. I feel like I would like to make this a visual statement. Not unlike the AIDS quilt. Is there a unique way to take these MS stories and weave them together visually, without losing their individual value? Allowing for each story to maintain its integrity yet build something larger.

There has to be a way to do this. I’m going to be thinking about that for a while. And while I’m on the search I’ll think about my diagnosis… and how that works in to this fabric.

Thanks for checking in…

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Dizziness Reduction and Alternative Reporting

So here I am, a month after starting the MS Detox Diet… or my version of it. And my dizziness that began way back when in December is subsiding. It happened so gradually I practically didn’t notice it. In fact the change was so subtle at first that I couldn’t determine what felt different. Just that something good happened. And the sensation is still present when I move certain ways- reminding me not to get overly confident. I’ll turn my head as I’m walking away and everything shifts. But for the most part it’s taken a break. It’s off center stage and blending in to the scenery. No longer does the world as I perceive it change when I go from a seated position to a standing one. Such a smooth and gradual transition… that it wouldn’t be difficult to forget. But now, when people have the courage to ask me how I’m doing… I excitedly report something other than status quo. And I remind myself to not get overly confident as I tell them that is crops up periodically. Don’t get used to this … because it can change back in a second. Since my “recovery” I have reverted more than once. As Dr. Verter, who has been treating me more regularly said, “don’t expect that this will be anything but a minor setback”. And he was right. And so it is. But I will keep my fingers crossed in an “un-superstitious” way. Hoping, praying? To the higher power that exists in this universe that this will be all but a distant memory to recap in a “what was” report of my Multiple Sclerosis.