Uncategorized

The small losses

Miscarriage is thought to happen in at least one in five pregnancies. That number might be a conservative estimate because some women never realize they were pregnant in the first place. Heartbreakingly common, yet rarely do we talk about pregnancy loss except in hushed whispers and tearful conversations with family and close friends.

It’s too sensitive a topic, this type of loss and grief. Part of it is the mystery surrounding it. As many scientific advances as we’ve seen in the past century, from moon landings to DNA sequencing, there is still so much we don’t understand about the human body, the female reproductive system in particular. Or rather, we do know about it, but are helpless to prevent the cause of most miscarriages before 13 weeks, chromosomal abnormalities that make a viable pregnancy not so.

The other is societal. We seek out what’s happy, and run far and fast from the sad. Because it’s all too much to process. And if you’re like me and have experienced recurrent pregnancy loss, it is overwhelming to the point of paralysis, devastating to a degree that makes you desperate beyond measure and largely inconsolable.

Miscarriage may have happened to you, your loved one, or someone you know. This is my story. I want to share it to help erase some of the stigma attached to recurrent pregnancy loss, show solidarity with those who have been there, and bring to light this all too common situation.

I know that in the world today, there are far larger tragedies and issues confronting many of us. Everyone has a mountain that is too steep, a darkness that goes too long, a struggle that persists. Mine began several years ago.

#1

I was 33. Married for 10 years, we waited until we felt “ready” for to try for a baby. Our careers were in a good place, we thought, and financially we were OK. And friends our age were all starting to have kids. It seemed like the right time. I had been diagnosed the year prior with MS, but that was under control, with a Class C medication. Still, we became pregnant, and were ecstatic. But at 8 weeks, my first ultrasound, we discovered the beginning and the end – a fetus with no heartbeat.

It wouldn’t be the last time we’d hear the phrase “You’re still young. There’s still time.” Which is to say that the medical advice we were given was try, try again. How many have been told that same refrain?

But we weren’t satisfied with that answer, from an ob/gyn who wasn’t callous but wasn’t all that caring, either. We got a second opinion from a fertility specialist.

A hysteroscopy revealed a congenital uterine abnormality. A septate uterus, which was removed. The embroyo had implanted in that septum, unable to get any nutrients needed to sustain growth.

After a months-long recovery, we were going to try again, but my MS was not having any of it. Once I was feeling better, we began Letrozole to jumpstart my system to see if that helped. It didn’t.

We took a break, focused on other things, tried to live as though nothing was the matter. But it was always there, this nagging feeling of emptiness. Our friends’ babies were now toddlers. Life goes on.

#2

I was 37. It was February 2016, and I was driving to work when a pain so intense and immediate hit me that I could barely walk. My co-workers helped me out of the office, and an emergency visit to my doctor led to my first ever ambulance ride to the hospital. We had no idea what was wrong, other than this incredible pain shooting up my right side.

Test upon test finally found that I was bleeding internally, from a ruptured tubal pregnancy. A surprise pregnancy.

I was rushed into emergency surgery, where live-saving measures had to be taken. My left fallopian tube was among the casualties that day. I was about 8 weeks along, but the embryo never made it to my uterus. It embedded in that tube, leading to a pregnancy that was not just unviable but dangerous. And women who have one ectopic pregnancy have greater odds of having another.

#3

I was 38. We weren’t sure what was next for us, but we knew we wanted a baby. We started looking into adoption and IVF, both expensive and intensive measures. In October 2016, we began the regimen for IVF, which is full of cycles and shots to manipulate a woman’s reproductive system to control the timing of ovulation.

I didn’t have many eggs. Women who endure this can tell you that after age 35, things start going south. One egg was viable. One is what we worked with.

One wasn’t enough.

#4

5.4 centimeters. Or, as the pregnancy app liked to measure it, bigger than a kumquat and about the size of a small lime.

My dad had texted me earlier in the week, saying he was looking forward to when it was the size of a jicama. What does that even look like, we joked.

I am 39. I was 12 weeks into what would be my fifth pregnancy, the longest of any thus far.

Early in the pregnancy, at six weeks, I began bleeding. We went to the ER, certain that was a bad sign. An ultrasound discovered a subchorionic hemorrhage, which is a tear in the lining. But there was also a heartbeat.

We were astounded. We hadn’t been trying trying, after being told by doctors that there was not much of a chance. But this news buoyed us, gave us hope that we hadn’t had in what felt like forever.

At our first official checkup at eight weeks, we heard the most beautiful of sounds—a galloping heartbeat, 155 beats per minute. We were starting to believe that we had beaten the odds. That we did, as the doctor said, have a miracle.

My symptoms were typical, which made me excited and nervous all at once. We started talking about baby names, and how to announce the pregnancy. Still, we couldn’t escape the nagging feeling that it was too good to be true.

And it wasn’t. Little Bean didn’t survive. Somewhere between 11 and 12 weeks, the heart stopped.

Our world has, too.

 

 

 

 

 

Multiple sclerosis, Uncategorized

Sea legs

Gimme a beat!
If there was one true thing in this world, it was that I could always beat Nick at leg wrestling. I came about this accomplishment quite naturally – through my genes, mostly. I’m from pretty hearty stock, in case you haven’t noticed. That, and the 20 years of dance probably didn’t hurt either.

I got the nickname quadzilla for obvious reasons. Twinkletoes was another moniker. My muscles were defined fairly early; at 5, I was pretty ripped in the leg area. They were, as Natalie’s legs were described to Hugh Grant the prime minister in Love, Actually, like tree trunks.

I used to be pretty self-conscious about them – they felt out of proportion with the rest of my body. But then it dawned on me just how much I could do with them, how far they could carry me. I could do toe touches and high kicks and run and run and run. They never gave out.

Ain’t it grand, just how fucking amazing our bodies are? How this clump of cells and water and tissue work in unison to let us do things like walk and dance and bike? Of course, we take that for granted. I certainly did. I stayed in serious denial until I had to be dragged to the ER because I couldn’t use my right leg anymore. It took a few months before walking felt close to normal again, where I didn’t have to actually think about my muscles going through each stage of the walking process.

When Nick began biking and I began MSing, the paradigm shifted in our wrestling matches. My lower body strength became no match for his. These days, my legs still have much of that definition from my dancing days, but they operate quite differently. It’s like I have a  case of sea legs I can’t shake.

Walking is slower, a little unsteady. Running, ha! Dancing, we’ll see.

image

It’s hard to wrap my head around, but this fall will be four years since my MS diagnosis. Aside from the occasional stumble (literally) and needle fatigue (yes, I’m still doing that), my disease path has taken a turn for the better. No true exacerbations for two years, which makes me want to do a happy jig.

Of course, let’s not have delusions of grandeur here – it’s still a struggle. I’m still hitting that wall of fatigue more often than I’d like. The hand numbness never quite goes away. My left leg … well, it has a mind of its own most of the time.

It’s interesting that my focus turned to my legs, but my physical health has been on my mind lately as I consider returning to my first love, dance.

It was quite unintentional, I promise, but it is a good  segue for Walk MS: Central Arkansas.

We’ll be getting together April 12 in Little Rock for the event, which is the rallying point for MS awareness in Arkansas each year. Please join us, or donate to our team, the Word Herders.

I will try to write more – this feels very rusty. It’s been a long absence, and I told myself it was because I was feeling better so I had nothing to bitch about anymore. But there’s always something I can say, or share. I hope you stick around.

Advocacy, Multiple sclerosis

Orange crush

lovelyladies

It’s MS Awareness Week, and I’ve nearly succeeded in proudly donning our signature color every single day.

Funny how orange, which I once associated with the MS prison I felt locked up in, now has a different connotation. I see the color as one of power, strength, resilience, solidarity.

I wasn’t able to make it to PPC day in Arkansas this year, but I heard that other activists and legislators now know what orange stands for. That’s a good feeling. We’re making inroads in areas where we need to make a big impact.

We just held our first ever Orange You Lovely fashion show, which raised thousands of dollars that will go directly to research and programs for those living with MS.

Of course, the color du jour was orange, in every shade imaginable.

meorange

See more outstanding Angie Davis photos.

We hope to make this an annual event, bringing together even more supporters.

And I hope this week is one of increased awareness for everyone and that everyone has been an activist in some way.

Fight on, my fellow MSers!

Advocacy, Multiple sclerosis

Rumors of my demise were greatly exaggerated

When we last left off, our heroine was fumbling over her myriad passwords and tolerating the brutal Arkansas summer with aplomb, whatever that is.

As the months ticked by, she bravely trudged on, juggling her jobs and home life and health.

On the MS front, things are pretty OK. Not perfect, no. That would require a chocolate-covered cure. But no new exacerbations – chalk that up to less stress on the job front.

Still, there is much work to be done. More funds to be raised. More research to be conducted. More services to be offered to MS patients. More programs to help those who need it.

Which is why (drumroll): I am this year’s chairwoman for Walk MS!

walkmslogo

It’s a huge honor, and one I took on after being asked in December.

So it’s my mission to get the word out about MS and how warriors fight it daily. Get team captains motivated. Get the givers to giving. Get the public to care.

What did Voltaire say? With great power comes great responsibility.

I hope I can make an impact in my small corner of the world. I hope I’ve already done that, in some small way, with these ramblings.

But now it’s your turn to step up in a big way. HELP ME!

Join my team. Or donate. No amount is too small.

I’m a big believer in good deeds. Prove me right, friends!

2013-Walk MS Email Signature_Final

Multiple sclerosis, Struggles, What was I thinking?

Is it just me?

I can’t decide whether I’m a victim of my own technophilia or the scrubbing-bubbles effect MS can have on the brain.

Lately, it’s logins. I have nearly four dozen of them, all told.

Two I know by heart. The rest are a confusing heap of random qwertiness that leaves me grasping at straws for the right combination, even though I created the thing in the first blasted place.

Which means I have to change certain passwords a lot because I keep forgetting them … and sometimes I write them down, but I don’t want to say what account they are tied to, so then it comes down to these sad clues I leave for myself, Memento-style, that I never seem to figure out.

Yes, for some I opt for it to remember my login info. But that’s not 100% foolproof. Take this blog —

You know you have MS if your brain fog is so bad you forget how to log into your MS blog.

It’s only more recent information I seem to have a problem with. I will probably recite my childhood phone number and street address on my deathbed. (Mom and dad, kudos on raising a child know her safety info!)

Part of me thinks it’s not really me but the information overload we all must struggle with as modern-day denizens of the digital world.

I have friends who complain of the mom-brain syndrome.

My husband forgets where he leaves his pocket stuff on a daily basis.

 

And here’s where I forget my next thought …

Gulp. Sometimes it is me.

 

Multiple sclerosis, Uncategorized

‘Mine is not a unique situation’

So said David Rakoff in the months before he died.

“Everyone loses ability. If you’re lucky, this happens over the course of a few decades. If you’re not, (meh). But the story is essentially the same.”

And he dances. A few sweeping, sentimental gestures. A rueful smile.

His grace is beyond words, although he does those quite well, too.

For those who have 15 minutes to observe a life well-lived, despite circumstances:

Nick, Struggles

I’m positive the glass is half empty

Nick and I have a long-running debate in our house. It’s part of the oil-and-water, fire-and-ice dynamic we’ve functioned on for years.

His sunny-side-up brand of optimism strikes me as Pollyanna-ish and naive.

My glass-half-empty, pessimistic realistic approach to life grates on him.

But I might be close to winning this argument.

Hear me out. (And read this article in the New York Times about the power of negative thinking.)

Maybe sunshine and rainbows and silver linings aren’t all they are cracked up to be. I maintain that if you only think positive, you’ll be caught off guard when bad stuff does happen.

That’s not to say I dwell on the bad. But I do factor worst-case scenarios into all of my plans.

Some research is being conducted that shows positive thinking has its downsides. I’m not advocating that we swing the pendulum too far the other direction, either, although I tend to stay on the frowny-face side of the spectrum.

But positivity for the sake of it feels artificial and arbitrary, doesn’t it? Like forcing it doesn’t actually make the situation better and can distort reality to the point of ignoring serious problems. Sometimes mind doesn’t trump matter. That may sound defeatist, but I have some experience in this area.

Sometimes hot coals are stinging stones of pain.

Sometimes MS is a brooding cloud that has no silver lining.

Maybe sometimes negativity, as long as it isn’t depression, isn’t the worst thing.

I’m reading The Marriage Plot by Jeffrey Eugenides right now. Without giving too much away, there is a character who manic-depressive. He tries to explain that depression is a different beast from being depressed. I wish more people understood that.

 

Multiple sclerosis, Struggles

Not disabled enough

I’ve never much noticed whether any quizzical, judgmental glances are thrown in my general direction when I break out my placard and park in a handicapped spot.

To the casual observer, I look to be in good shape besides needing to shed like 50 (OK, 75) pounds. Most days, I display no obvious symptoms. I haven’t used my cane in months. But I use my placard nearly all the time in the summer.

So I was thrown today when a couple driving by yelled at us as Nick pulled into the spot labeled with the big blue wheelchair.

They might not have seen the placard. They did see me as I got out of the car and walked 15 feet to the door.

“That’s a handicapped spot,” the man shouted from an SUV.

Shame bloomed across my face, my ears and cheeks flush with the humiliation of being singled out.

“I know. We have a placard,” Nick replied loudly.

The woman driver also chimed in. The man kept yelling.  So did Nick.

“My wife has MS. Fuck off.”

The next 10 minutes was a hot blur. Wracked by stabbing guilt, I sat down, my rubberized legs unable to stay steady.

I thought about perception. I thought about the “but you don’t look sick” phrase that gets tossed around so often. I thought about the “look at the placard, not the person” mantra I heard recently.

And then I thought — as I have many times before — that I’m just not disabled enough.

As if there was a sliding scale. For me, there kinda is. I don’t ever want to take a spot from someone who truly needs it more than me. But how do you rank need?

I need to conserve energy. I need to stay out of the heat. Do I need the shortest distance between Point A and Point B as I can possibly get? Debatable. I suppose I could get by with doing less, running fewer errands, going out to fewer places.

But really, that’s no quality of life. So perception needs to change.

How do you respond to people who think you don’t deserve a disabled spot? How do you show the invisible?

 

 

 

Multiple sclerosis, Uncategorized

Why hello, stranger

Yes, I went dormant for a couple of months.

No, I’m not falling apart.

Yes, the triple-digit heat is a tad miserable.

No, “they” won’t install misting tents every 50 feet for my convenience.

Yes, I heard about Jack Osbourne.

No, I didn’t watch his mom cry about it on The Talk. OK, maybe once.

Yes, I’ll keep blogging.

No, I can’t wait for the last Batman, either.

Yes, I got the new Fiona Apple.

No, I haven’t decided about the new Smashing Pumpkins yet.

Multiple sclerosis

Vanity, thy name is …

I will be the first to admit that I won’t be strutting down a catwalk anytime soon.

This body of mine, while huggable and sometimes strong, isn’t model material.

I know and accept this as a universal truth, much like I acknowledge that the sun rises in the east, and Charlize Theron is an alien from the planet Imahotgal sent here to make the rest of us feel inferior.

Now she was a model. Me, not so much.

So it shouldn’t really bother me that my daily injections leave me pretty banged up.

But it does.

My stomach, arms and tush are a topographical map of swollen hills, creases and red rivers. The pain of a daily shot is compounded by the scars it leaves behind. Those traces of the injection can take days to go away, and even though you rotate to give an area a break, there’s always a chance that you will hit the same spot too soon.

There is some vanity to this, I admit. I recoil from myself sometimes when I see a bruised spot, or touch a knot that has yet to fade into nothingness.

The longer the shot regimen (uh, life?), the more tissue gets damaged and never fully recovers.

Here you thought cellulite was bad.

I know, this shouldn’t matter to me. I should just overlook these spots and go on my merry little way. I am not disfigured, nor did I suffer third-degree burns. But then you hear women fretting over stretch marks. About surgery scars. Acne scars. Moles. And women getting surgery after plastic surgery.

Is it vanity, or something more than skin deep?

I don’t derive my self-worth from how I appear. I know there’s a lot more to me than just what can be seen.

I know I will never saunter along Ursula Andress style in a Bond bikini. I’m fine with that.

But still.

Can’t I want to feel good in my own skin?