Thursday, November 15, 2012

It's All Relative

I am sure I have said this before, but it seems obvious to this mother-to-be that much like MS, the experience of pregnancy is vastly different for everyone. I can remember watching the majority of my friends go through their pregnancies and people usually fall into one of two categories: those that don't mind (or even enjoy) being pregnant and those that hate it. And in many cases - the person who had severe nausea for 40 weeks straight or the high risk pregnancy who ended up on bed rest the last 3 months - you can understand why the experience would be somewhat negative. 

Then again, it depends on your own personal experience, right? I have really enjoyed being pregnant, partly because mine has been fairly routine with all the "normal" symptoms, nothing crazy. It's also partly because how I feel pregnant is a vast improvement over my baseline everyday symptoms. I have rather enjoyed trading nerve pain and spasticity for back pain, leg cramps and a tiny person who likes to kick me constantly in the ribs. 

The things I have struggled with - maybe more so than the average healthy person, maybe not -  is the unfortunate knowledge that when life is going along without a hitch and everything finally seems to be coming up roses, well, that's often when Life sneaks up from behind and knocks you right on your butt.   It's a terrible way to feel, but I would be lying if I said those feelings didn't linger at least a little bit. 

It's so easy to get caught in a spiral of self-doubt and negative feelings when Life knocks you down. You may begin to think the good things in life just weren't meant for you. Maybe you think you are cursed. I know at times I certainly have! All the horrific things sometimes leave us wondering when the next horrific thing will come, not if it will. I found myself recently getting irritated by a friend's off-handed comments about having a second child. I thought, "How dare she! How arrogant of her to think that just because she wants another child that - boom! - her wish will be granted! Life doesn't always work like that, she should know better than to assume such things." 

Then I took a step back and realized there was absolutely nothing wrong with my friend expressing her wishes and goals. Why shouldn't she? It's my own life experience that has made me more sensitive to the fact that having plans and wishes aren't always enough. But then again, here I am (finally) pregnant and  feeling pretty good today. So things often work out the way you dreamed they would, just not on the easy, straight path you originally envisioned. 

At my perinatologist appointment this week, they did the usual ultrasound. She looks great, getting very big. Then the doctor came in to talk to me. She reiterated everything looked great, but then said she had to be the "bearer of the bad news." My heart jumped into my throat - here it was - the horrific thing I had been fearing. Something was wrong. I knew it. I knew it!! I calmly looked at her and waited for the information, cursing myself for not bringing Chris to this random appointment for moral support. 
Finally, she says, "So now that you're 34 weeks we're going to want to see you in the office every week from here on out. Sorry, I know that's a bit of a pain, but we prefer to be overly cautious with high risk people with autoimmune diseases." 

I immediately burst out myself. That was the bad news - that I now had to see the doctor weekly. She couldn't understand why I was laughing. She said most patients were very irritated with having to work weekly appointments into their schedules. I laughed some more as I explained that at my worst, I had doctor/PT/OT appointments 5 days a week. So a measly weekly appt - that was no big deal in my book. But to the average patient who hasn't ever heard really bad news from a doctor, that probably does constitute less-than-stellar-news. 

It's really all relative, isn't it? Each of us is shaped by our own life experiences. I often wish it were easier for people to be more empathetic towards one another, myself included. But it's really hard to see things from a perspective so vastly different from your own. How can you really ever know what it feels like to be in someone else's shoes? I wish there was an app for that. ;-) 

So I try not to worry too much and just enjoy being pregnant, enjoy how good I feel, even enjoy it when she is kicking the crap out of me and I only get 3 hours of sleep. And if I can keep laughing at myself whenever I jump to the worst case scenario in my head and remind myself that I deserve the good things in life as much as anyone...well, then maybe it will all be okay after all. 

Monday, October 8, 2012

War Stories

So I make an appearance at this party over the weekend. Lovely party, lovely people. Granted, I wasn't feeling awesome, so I may have been slightly touchier than usual. I meet several new people and the universal icebreaker is,
"Congratulations. When are you due?"

I think it's so cool. Instantly, I have something in common with millions of people. Then said strangers (who happened to be a mother and father of 2) out of nowhere launch into their "birth stories" - the unsolicited, unwelcome stories of how their two little ones arrived in this world. And trust me, the stories didn't go, "And it really wasn't as bad as we thought it was going to be." And this is by no means this first time this has happened to me, either with birth stories or tales of parenting that will challenge even the strongest of stomachs.

Imagine if you will, that after meeting someone who has recently been diagnosed with MS , I immediately respond with:
"Oh my God. It totally sucks. I had seven relepses in the first two years. None of the medicines worked for me. Pretty soon I couldn't walk without a cane and one arm was totally paralyzed. And the constant nerve pain and pain from spasticity - It's so unbelievably awful."

C'mon. Really?!? Can you imagine me saying that to some newly diagnosed person who has barely learned to pronounce "multiple sclerosis?" Of course not. I would never do that, because that would be unbelievably cruel and insensitive, right?

No matter what facade these people are trying to maintain, I know one thing with 100% certainty:
They are absolutely terrified.
I also know that they are looking to me, the MS Veteran, for hope and reassurance. New MSers are desperate to talk to other MSers - they need to know that someone else has come before them on this crazy journey. They need to feel that they are not alone and that, somehow, it is going to be alright.

Of course, the difference here is that there are a lot of wonderful, positive emotions associated with finally becoming parents, but let's be honest: We are also terrified.

So what is it about so many Veteran Moms (and Dads) that, upon finding out you are pregnant, makes them immediately want to terrify you further, rather than reassure you? What good does that do? Is it some sort of hazing ritual?? Nothing anyone says can possibly prepare you for the things these people are describing related to labor, childbirth and parenting in general, so why bother scaring first-time parents with the horrific details, which does nothing but keep us up at night worrying ourselves sick.

I can't tell you the number of people who, after hearing our good news, have launched into the unsolicited, gruesome, terrifying stories of their own childbirth experiences. Not just strangers - people that I consider my dear friends do this, too. And with nothing to compare it to (my melanoma surgery was pretty barbaric - does having my head ripped open and put back together like Frankenstein count?)  I try to sit there politely and listen, but honestly I wonder what their agenda is. Are they somehow looking for my sympathy? They sure as hell can't be looking for camaraderie and the trading of war stories. Um, hello? I haven't yet been to the war you people are talking about!!!

I have to keep reminding myself that these Moms and Dads must mean well, that they must be truly happy for us and they aren't actually trying to keep me up at night tossing and turning, certain that every awful thing that happend to each of them will, in fact, happen to us. I also have to remind myself that, much like MS, pregnancy, childbirth and even parenting are hugely different experiences for everyone. Poll ten people, get ten entirely different stories.

Nevertheless, if you are a Veteran Mom or Dad, please, I beg of you - for the love of all that's pure and holy - save your terrifying, gory, horrific war stories for after we First-Timers have our little ones safely in our arms. Then you can "initiate" us or whatever it is you are doing and we can all trade our gruesome details till the cows come home.

Just as I was once a terrified, clueless MS Newbie, please try and remember you were all once terrified Newbie First Time Parents, too. And anyone going through such a major life change needs allies and people on their side. We are counting on your wisdom and experience. We're going to need all of you Veterans to turn to when we have 5 million questions about this new person coming to live with us in a few short months.

MS, children, family drama, money problems, issues at work - it doesn't matter what the issue at hand is - mainly we are all just looking to feel like we're not alone. Sometimes all we really want to hear is:
"It's okay to be scared. I was scared, too. But everything will be alright. You are going to be just fine."

Saturday, August 11, 2012

Top Ten

Years ago, I started doing research on what it would mean to become pregnant while living with MS. At the time my disease wasn't "stable",  and my doctors agreed it wasn't safe to start trying to conceive. So I busied myself with gathering as much information as I could get my hands on about what happens when a woman with MS decides to try and carry a child.

Turns out, there ain't a heck of a lot of info out there
In fact, women who get diagnosed with MS and then decide to have a baby are actually a very small subgroup. My neurologist and ob-gyns could count on one hand how many they have ever had.

On one hand, I totally get it. MS is devastating and one of the most unpredictable diseases out there. You don't know if you will sail along fine for years or if tomorrow you will wake up with certain limbs not working, or not be able to see. And from what I hear (and my many friends tell me) parenting brings its own set of unpredictable challenges. It's a lot of unpredictability for someone to consider undertaking.

But if you are reading this, you probably know me well and you already know I rarely shy away from a challenge. Certainly not one as worth having as this.

Furthermore, most of the studies and medical journals I read stated that during pregnancy, most MS patients feel amazing. Relapses are rare during these 40 weeks and, in fact, many symptoms (even ones we have had since Day One) mysteriously disappear during pregnancy. Sadly, they usually return with a vengeance along with a 50-60% risk of relapse after the baby is born. But, seriously - the past 5 months - it is the best I have felt in 5 years. I have some symptoms off/on but nothing like I normally have. It's like an MS vacation!

So even though we are a super small subgroup, and I can understand an MSer's reticence to start a family, I would argue that in many ways, women with MS are as capable of handling pregnancy than anyone. Maybe in some ways, more so. I got to thinking about it and it inspired a Top Ten List.
So for your reading pleasure...

Top Ten Reasons Why Women With MS Are Already Prepared For Pregnancy: 
10. We are expert patients. We have spent years of our lives in doctor's offices and navigating the medical system. We know the drill. We know to ask lots of questions, take good notes and we aren't surprised by waiting hours to be seen by a physician.

9. We already meet our deductible every year. Easily done when our medications cost upwards of $9000/month! So while it might be a shock for a healthy person to shell out $3000-$4000 for their labor/delivery hospital stay, many of us will receive a  $0 labor/delivery charge. Sure nice for a change!

8. What body image issues? If you have been a generally healthy person with normal weight your whole life, then suddenly gaining upwards of 30 lbs could be a hard adjustment for your ego. But I say, give me pregnancy weight gain any day of the week. Adjusting to my body image as a disabled person with a paralyzed arm who walked with a cane was 20 times harder than gaining 30-40 lbs for a really good reason. Bring on the cookies.

7. Bladder issues. Been there, done that. MSers are sadly used to our bladders not always being under our control, especially during relapses. We already mentally take note of the nearest bathroom everywhere we go, so we are totally prepared for pregnancy bladder!

6. Pain and discomfort..but actually for a purpose. Yes, pregnancy is uncomfortable and often painful. As I write this, I have gotten no more than 3-4 hours sleep the past few nights due to the shooting pain in my hips that forbids me to go back to sleep. The heartburn/reflux alone is enough to knock you on your butt. But as long as I live, I will never forget seeing a facebook post as a friend of mine went into labor: "It's pain for a purpose! You can do it!" At the time, I was writhing in purposeless nerve pain from MS and my herniated disc and I was so disgusted and disheartened I almost threw the laptop across the room. Last night's pregnancy pains had me in tears, but I am comforted by the fact that (finally) this pain is most definitely for a purpose!

5. Fatigue is part of our daily life. Hey - most of us already own shower seats for when we are too tired to stand up and take a shower. Yes, pregnancy makes you tired. And MSers definitely are used to extreme fatigue. We have learned to manage "our spoons" as best we can.

4. We are used to not being in control of our bodies. For many pregnant women, this is the first time they have had little to no control over the physical (and emotional) things happening to your body. Other forces have taken over! I had to admit years ago, that I was no longer in control of my body and that many times the MonSter held the reins and I was along for the ride. So far, even when I'm in pain or feeling crazy hormonal, I much prefer this baby's way of running things over the MonSter's!!

3. We had to learn to say No years ago. It's such a tiny word and yet so difficult to say, especially to the things we really want to do. But managing a disease like MS means saying NO...a lot. It sucks, but it is necessary to our health. Pregnancy is not a lot different. It's important to acknowledge what your body needs, even when it may not be what you really want to do.

2. We also became experts at asking for help when we need it. This is maybe one of the most important. I can safely say that for the majority of my peers, being pregnant and having a kid was the biggest "medical" thing they had ever experienced. For many it was their first hospital stay, or first surgery and therefore, their first recovery. Chris and I both have learned the importance of asking for help and we are blessed with an amazing village that has risen to the occasion so many times for us. Pregnancy/childbirth/having a newborn will be no different. We know we will need help, from our friends, our family, and from professionals. I am no less of a person or a mother because I can't do it all myself. We all need help sometimes! Certainly during a major life change like this one.

1. We are thrilled to be a patient with a positive medical issue! No one congratulates you when you show up to their office with MS or cancer. I am so used to the sympathetic looks of healthcare professionals as they hand me a new diagnosis, or tell me what surgery I have to have, that this whole experience has been such a unexpected joy. How often in life do you get to be at the doctor's office for something positive?!

Thursday, July 26, 2012

In case you haven't heard yet...
the newest member of Team Wearing Red Shoes is due in December!  

Chris and I are super excited and so far I have been feeling pretty good and the MonSter is laying very low. In many ways, it's the best I have felt in 5 years and for that I am very grateful. 

More updates soon!

Monday, April 30, 2012

Sensory Overload

Obviously, I don't write quite as often as I used to. This is partly because the MonSter has been playing nice lately and I am rather enjoying living my life without it constantly digging its claws into me. But I would be lying if I said that was the only reason. I hate to admit it and seldom say it out loud but my eyes give me a hell of a lot of grief, all day, every day. I have adjusted and I continue to adjust to them.

You may have noticed that the culture we live in today is very much dependent on this little thing called the internet. And that we are all addicted to our smart phones and our social media and all that jazz. And while I don't spend nearly as much time on a computer as many people I know, I do like to read and send emails, see what my friends are up to (occasionally stalk people??) on facebook, check out the latest sales online, pin things on Pinterest, etc.

Between the double vision and the severe dryness, my eyes get tired very easily and when I try and do too much reading, driving, TV watching or spend too much time staring at a computer screen they get angry very quickly. It can be a total bummer, especially when I am in the middle of reading an awesome book or desperately trying to play something on the piano only to have the notes swim together on the page. I laugh when I think I actually used to work in a IT/Training Department and spent 8-10 hours a day on the computer. The thought of trying to do that now is completely insane. 

And in today's online culture, it is hard sometimes to feel like I am not missing things when I only spend a tiny fraction of my day on any sort of computer, as compared to much of the world. Then again, maybe it's not such a bad thing. It means I have to carefully pick and choose what I spend my time on. I have to prioritize my precious eye time and say no to alot of things that I would have spent time looking at in the past. And while it pisses me off sometimes, is that really such a bad thing?

An old friend of mine wrote a book recently called The Information Diet and while I am certain his target audience was not people with visual impairments, the message actually applies to us all equally. Maybe it's okay that I don't consume as much information online as a I used to. More that half of what I used to do online was "junk food" anyway. Was any of it really making me a better, smarter, well-rounded, more interesting person? Probably not.

So what if I don't graze through the amazing things on Pinterest as often as I would like? Instead I played a new song on the piano that one of my students wants to work on. No, I didn't click on that article about so-and-so and what they wore or  and I didn't read through everything on facebook, instead I drove to meet my best friend and we had a wonderful, meaningful conversation over tea.

I think like many things in life, it's about moderation. Eat what you want, just not too much of it. Have a glass of wine now and then, not the whole bottle. Spend some time on the internet, or on your smart phone, not all day, every day. More than ever, I realize the importance of taking time to 'unplug' from it all, to limit my time spent at the computer and in turn, avoid that feeling of sensory overload on my eyes and my mind. And despite occasionally feeling like I am missing out on things, in the end I hope to be a more relaxed, slightly saner version of myself. 

Monday, April 23, 2012

Another year of wearing red shoes!

WalkMS 2012 has come and gone - our team's 5th year walking for the cure in our fabulous red shoes. It was a perfect day, not too hot for us MSers but sunny and gorgeous. We had an awesome turnout and so far have raised $11,900 this year! I have a truly amazing team and such generous donors - I appreciate you all more than you know! Enjoy a few pictures from the big day! XOXO

Tuesday, April 3, 2012


No matter how many years go by and no matter how many battles under my belt, there are certain feelings that never really go away, no matter how deeply I might bury them. And it only takes a precious second for them to all come bubbling up to the surface again, as fresh and as raw as they ever were. in my case, it's usually the feelings of grief and longing for the life I dreamed I would have - the life that is so vastly different than the one I am actually living. I realize I am blessed in many, many ways. I was lucky to be born in this country, to loving parents, to have a large, amazing family and groups of friends. I was blessed with intelligence (sometimes), I am not too unfortunate-looking and I have musical gifts and talents that I get to share with people I care about.

And yet, every so often out of the corner of my eye I catch a glimpse of some life that never existed, some life that could have been a reality...if things had been different. And when this happens I cry, sometimes for days on end to the point where I am certain it will never stop. I cry for all the things I have lost and for the future which seems less bright than it used to. I cry because I am terrified of how this journey has changed me and I fear I won't like who I become if the path continues like this for years and years on end.

I mourn the loss of simpler times when among my greatest fears was having to kill a spider in the bathroom. Now I fear losing my health insurance, not being able to afford my medication and ending up paralyzed again. Well that, and the risk of a fatal brain infection from this amazing drug that I desperately need to be able to afford because it's really my only option at this point until other drugs get approved by the FDA.

I don't know many 32 year olds who have to worry about those things.

There's that old saying that if you and everyone you knew stood in a circle and threw all of your problems into the middle, you would look at everyone else's crapola and gladly take back your own problems to deal with.
Not me. No sir. I would leave all these diseases right there in that circle, take somebody else's problems and run like hell in the opposite direction.

Leave the MS for someone else to pick up. Yeah, you can have the cancer and the constant fear of it returning, too. And don't forget to take the Sjogren's on your way out - it's loads of fun in the spring when your eyes don't make tears to wash away the pollen.

I fantasize about escaping it all. I come up with creative ways to distract myself from the fear and longing and sadness. But every escape is only temporary, always far too brief and all my troubles impatiently await my return every time.

I dream of a place where there isn't any trouble.
Do you suppose there is such a place, Toto?
There must be.
Not a place you can get to by a boat or a train.
It's far, far away...behind the moon....beyond the rain...

Friday, February 3, 2012

Into the woods

Tomorrow is one-year since my neck surgery. I have always been good at remembering dates - people's birthdays, anniversaries and such. In my own life, however, this also means I am good at remembering other dates - my MS diagnosis, my cancer diagnosis, melanoma surgery, neck surgery. I can't help but have the dates engraved in my mind. I do breathe easier with each "anniversary" as the memories of the pain, both physical and emotional, begin to fade.

I like to hope that years from now I look back on this period in my late 20s-early 30s and say that it was the worst, or at least one of the worst times of my life; however, I am not so naive to believe that all these years have bought me a free pass for the next 20. Life has been shoving that lesson down my throat for a while now.

I get it, Life. You're not fair.
You don't pass around the grief, pain and loss equally.
Some of us bear more than our share and others get off with no more than a few scratches. You're not a bowl full of cherries. I get it.

My sister-in-law gave me a book for Christmas, Stephen Sondheim's "Hat Box" which includes all the lyrics to everything he's ever written. Sondheim's Into the Woods is one of my all-time favorite musicals. It weaves together different fairy tales along with stories about relationships and of people's journey through the "woods," and clearly Sondheim is talking about more than just those clusters of trees behind your house:

You go into the woods, where nothing’s clear, where witches, ghosts and wolves appear.
Into the woods and through the fear, you have to take the journey...
Into the woods you go again, you have to every now and then.
Into the woods, no telling when. Be ready for the journey.

The way is dark, the light is dim...
The chances look small, the choices look grim.
But everything you learn there will help when you return there.

Into the woods you have to grope, but that’s the way you learn to cope.
Into the woods to find there’s hope of getting through the journey.

God, he's really a genius. Isn't he saying that we all go through the woods at various points in our lives? Everyone's woods are different and some people spend (a hell of a lot) more time there than others. Life forces us, often time and time again, to push through the horrors and the awful realities. But in doing that, we are learning how to fight. We pick up our machetes and slice our way through the forests or we climb a tree for a bird's eye view to find our way out.

Going into the woods forces us to get creative, to take a hard look at ourselves and ask what is it that keeps us going? What is it that makes people want to fight their way through the forest while others are too afraid to move and stay stuck there for years, maybe forever? Is it fear that motivates me? Is it anger? Is it hope? Each time we get thrown deep into the woods and find ourselves alone in a dark, scary place - what matters is that we keep fighting and remind ourselves that with every horror Life throws at us, hopefully there will be some wonders, too. And if Mr. Sondheim is correct that "everything you learn there will help when you return there," then maybe that means we get out of the woods a little faster the next time.

I wish I had the answers. I wish I knew why so many of us keep getting thrown back into the woods and tossed to the wolves. I wish I knew why other people are lucky enough to spend hardly any time there at all. I wish I could go to the festival (only true Sondheim nerds will get that one!)

At any rate, talking about life's challenges is less frightening with a nice musical theater metaphor, isn't it?