*waves*

Hey there.

Life’s been crazy. I have been writing – just not on this blog. I’ve been writing here.

modern-day-ms

Here’s a link to my most recent stuff.

I was actually just featured in an interview on that site yesterday.

Love That Hugabug!

hugabug

Henry is growing like crazy. 10 months old, wearing size “18 month” clothes. He’s babbling all the time, blowing raspberries, and pulling himself up on furniture. He’s so close to walking that I’m trying my best to appreciate how easy it is to keep up with him these days.

I’ve started working on planning his 1st birthday party, which will be a joint party with his Grandpa (my dad), since they share a birthday weekend.  I think I’m actually more excited about my parents, my brother and his awesome wife coming in town to celebrate than I am about the fact that we managed to make it a full year without accidentally killing our beautiful, amazing baby. Being a parent is hard, yo.

I’m a mess, but I’m doing my best.

My health has been frustrating and upsetting, so I’ve been doing my best to minimize the struggle while responsibly handling it.

I believe I had an early miscarriage a couple of months ago. I’m usually very regular, but had a couple of very faint positive pregnancy tests and then didn’t bleed for 50+ days.  When I did get my period, it was the heaviest, most awful period I’ve ever had.  Dr. Dad thinks I might have just missed a period. He said it happens all the time, and not to worry about it. Adam has decided Dad’s right, so I’ve jumped on the “don’t mourn something that never was” bandwagon with my conscious mind and have been dealing with terrible depression and nightmares because of the choice to repress my feelings of guilt and sadness. I see my therapist on Saturday, thankfully.

Of course, just afterwards, I had a MS relapse, complete with tons of seizures, neuropathic pain in my legs, muscle spasms, and tingling/burning on various parts of my back. A medrol dose pack seems to have done the trick to quiet most of it. Come to think of it, it’s been almost 6 years without a drip — so that’s pretty good, I guess.

My stomach is still up to its shenanigans, reminding me after almost every meal that eating is not a good idea… and that’s despite my gastroenterologist doubling the amount of Prilosec I take. I am scheduled for an upper and lower GI scope on St. Patrick’s Day.  (Fun, right?)

After 2 years of not seeing a dentist for a myriad of reasons, I finally went in for a cleaning and exam. I have 2 cavities to get filled this month as well, in 2 separate visits.

I honestly don’t remember the last time that I went to the gym to work out (though I did see a nutritionist), and today, I’m fantasizing about finding a chiropractor because my neck is super-sore from my head dropping thanks to seizures. Unintentional headbanging FTW. Honestly, I’m tired of hurting. Apparently, not tired enough to use my foam roller, but just enough to think about it and then whine to myself you.

cantwin

The bright spot in the health area is that I finally got glasses.  They’re cute and helpful. I had no idea how badly I needed them!  I now look forward to the day when Henry stops wanting to rip them off my face and throw them. I’m sure that will eventually happen someday.

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Anyway, that’s all for now. The little one is stirring, and I need to change and feed him.  Hope you’re having a good day! Be well!

Do It Anyway.

My drooly dragon on Halloween.

My drooly dragon on Halloween.

Hard to believe it, but Henry’s 6 months old now.  Right now, I’m lucky enough to have a moment to write because he’s taking his morning nap.

Today, I was published on another blog — Modern Day MS. I wrote a piece about how to improve your sex life, since the great majority of folks with MS have to deal with sexual dysfunction at some point.

Surprisingly, the hardest thing about writing that guest post was keeping my word count down!  There was so much more I could have written about because, let’s face it, there’s a lot of great information out there about having good sex.

One thing that surprised me was how much it helped to have a specific audience to write to, though. I think one of my downfalls here on In It For The Parking is that I have made this much more of a personal journal and much less of an MS-centric blog.  Ah well. If I cared about making money from my blog it might matter, but I don’t. It’s not why I write here.

So About That Title…

You may have noticed that the title of today’s blog entry is, “Do it Anyway.” It’s the title of one of my favorite Ben Folds songs, and has become a huge part of my current way of being.

Being a mom is tough. It’s especially tough when you have seizures and sometimes don’t have an aura. It can be really scary.

For years — way too many years — I spent my days on the couch and didn’t do a whole lot because I was afraid of hurting myself. I didn’t cook. I didn’t exercise, for fear of falling off a machine or embarrassing myself. I didn’t leave the house without someone else.  It’s only in the last 2 years that my seizures subsided enough for me to be brave enough to go out in public alone.

And now, as a mom, sitting on the couch and hiding from life really isn’t an option. So, I take the kiddo on walks to and from the store. I carry him up and down stairs. I have begun cooking again, and today, I think I might even be brazen enough to try to shower while my husband’s at work. (It smells like a good idea.)

There were a lot of people who asked me why I wanted to have children, and whether or not it was safe. They suggested that it wasn’t a good idea because they were worried about how I would take care of the kids and deal with my condition.  My response to them was always that I wasn’t going to let MS steal motherhood away from me.  So, even with all the fear, we did it anyway.

Why? Because one of the biggest, most important things I’ve learned is that even if you’re afraid, you need to do things anyway.  Sometimes, the more afraid you are of something, the more important it is that you do it.  That’s why bravery is a virtue.

Do I seize when I get overheated? Yeah, every time.  But the dishes? Those need to get done anyway. And this body? It doesn’t like carrying this much extra weight, so exercise is going to happen.

Don’t get me wrong — I’m not trying to cause seizures. I’m learning how to do things despite them.  For instance, it’s safer for me to swim (because it keeps your body cool) with Adam than it is for me to try to run on a treadmill. It’s safer for me to soak dishes in the sink and rinse in tepid water before putting them in the dishwasher than it is to use hot, soapy water. And it’s safer for me to keep the house at a crisp 68 degrees and only carry Henry for a few minutes at a time than it is for me to be afraid to pick him up.

For a long time, I thought that Kayla Montgomery was insane.  I mean, who wants to run races and trigger pseudoexacerbations over and over again, falling into her coach’s arms at the end of each race, just so she can keep running?  It sounded insane to me. But now, for some reason, I get it. She knows that someday, she’s not going to be able to feel her legs. She’s making the most of every moment she has control of them, and refuses to let this disease take any more from her than it absolutely has to.  And that takes a lot of guts.

I’m more than a little ashamed to think about how much time I wasted because of fear.  Sure, it was legitimate fear, but it was also depression. It wasn’t just that I wouldn’t push myself, I couldn’t. After failing the bar exam twice, I didn’t see the point of trying anything anymore. I didn’t want to find my physical boundaries, because I didn’t want to get hurt.

But, that’s pretty much what life is — getting hurt and getting over it and learning new ways to be… over and over again.

I’m tired of the internet being my only social outlet (aside from seeing my in-laws). I’m tired of defining myself by this disease. I’m tired of wallowing in how tired and/or afraid of seizures I am to the point that I allow myself to not be ambitious. It’s a waste. Not only of my potential but of the time I have here to enjoy life.

So, I’m fucking tired and scared. That’s great. It means I’m human. Big deal. Do it anyway; whatever “it” is. Acknowledge the fear and move forward thoughtfully.

Today, “it” is writing this blog entry and doing whatever I can to get up and be active. I can’t let my son learn that being an adult is comprised of sitting on your butt staring at a screen all day long every day. I won’t. Unfortunately, we can’t go to the gym today because the little guy is sick, and they’ve got rules against bringing sick kids to the gym.  So, I think I’m gonna walk to the store and get stuff for dinner and return a toy that I wish I hadn’t bought. (Toys with lights and sound aren’t always the best idea. Gotta find the right ones.)  Don’t worry, I always wear my medical alert bracelet and have an ICE app on my phone in case I seize in public.

If, at some point today, I’m able to vacuum the living room, make the MRI appointment I keep postponing because I’d rather not know how my MS has progressed without DMDs, and find a good dentist in the area, I’m giving myself all kinds of bonus points. Mostly because I don’t want to do any of that, but it all needs to be done.

So, I’m going to do it anyway.

Do-It-Anyway

Almost 20 weeks!

10997771_10153566954324522_6267979507934363414_nHey There, My Big Boy!

Hard to believe, but Wednesday of this coming week will mark 20 weeks that Henry has been in the world, and he’s already wearing clothes for 6 month olds. My little peanut is now more than 16 pounds and 27 inches long!  I’m thinking it might be time to bust out the jumparoo for him. 🙂

This kid is all kinds of awesome.  Sure, I spend all day, every day with him, so I’m biased — but I used to babysit a lot.  This little guy only cries when there’s something wrong. He’s inquisitive and gentle (except when he’s pulling my hair), and he loves music and books. He snuggles like a champ, he’s decided that diaper changes are actually an opportunity for
jiu jitsu training, and he has the best laugh on the face of the planet.

Right now, his daddy is out of town, doing some training for work, and my mom is coming in town to be with us.

It Takes A Village.

I have to say, I had no idea, when I got pregnant, what I was in for or how much help I was going to need.  I thought, based on those years of babysitting, that I had this mommy gig handled no problem. Man, was I wrong! I hadn’t even thought about what life would be like when I got sick. And I’ve been sick for 3 weeks now with acute sinusitis.

The first nurse practitioner who diagnosed me only gave me 5 days of antibiotics… so I got a little better, and then relapsed hard.  The second nurse practitioner (who I saw about a week later) was completely worthless and referred me to my primary care physician. When I arrived for my appointment with her, to my surprise (and dismay), I was examined by a STUDENT nurse practitioner!  Then the practice’s regular nurse finished up the visit, decided I still have sinusitis and put me on a 10 day regimen of antibiotics.

p17llh52kd1euorcm9ghmg6h16_L_655x435I’m not exaggerating when I say that only 4 hours after the first dose of antibiotic, I started feeling better.  This morning is actually the first time I’ve had energy without drinking a Monster Rehab in almost a month. (This stuff is stronger than 5 Hr Energy, believe it or not!)

I’m not sure why it’s been so difficult to see an actual doctor this month, but when I tried to establish care in my new hometown, I was informed that the doctor was booked up until October.   Yeah, like I’m gonna wait 3 weeks for something like this… I can only guess that this virus/infection has hit an awful lot of people.

Anyway — as many of you know, fevers cause pseudo exacerbations of MS.  This means that over the last 3 weeks, accompanying the low-grade fever that came with this infection, I’ve had a lot more seizure activity than I normally would.  There was one day where I kept seizing over and over again. I became very worried for my son’s safety and my own, and called Adam, who promptly called Laura (my sister-in-law). She came over and watched us for a couple of hours.

I was, and am, so profoundly grateful that we have family members who are willing to help us in times like that. I’m also glad that we now live only 20 minutes away from them. When we were living in Chicago proper, it took between 45 and 90 minutes just to see them, depending on traffic. So, I don’t remotely take their help for granted  — or that of my mom’s. She’s actually driving 8 hours from Pennsylvania right now to spend the week with us while Adam is handling his job requirements.

12002085_10153575527509522_4895338687839097525_nI’m especially grateful that Mom will be staying with us since I’m a little worried about Henry.  Adam took him to the doctor earlier this week because he’s got similar symptoms to mine. (No one in the Majka family has escaped this cold — not Busia, not Dottie, not even Uncle Jeremy.)  Anyway, Henry’s temperature has been good, but today, he’s been tugging at his left ear.  My right ear was clogged for 2 weeks straight.  It was miserable, and only got better 2 days ago.  Unfortunately, Hugabug’s too young for decongestant, and the doctor doesn’t want to give him antibiotics unless he ends up with a fever, which is understandable.

So, right now, Little Dude is going back and forth between fussy and asleep.  The only bright side I can think of is that I’m getting pretty skilled with the disgusting-in-concept, but incredibly effective NoseFrida snot sucker. Fortunately, his goop is not green like mine has been.

Homemaking

I’m also grateful that Mom is coming to town because, with all this illness, we’re still not fully unpacked. I’m really looking forward to having her assistance with organization, since this house is sorely lacking in innate storage space.  I have a strong feeling we’re going to be buying some furniture.

I also am happy that it’s almost Monday, which is when the plumber will be here to fix our leaky kitchen sink (which he completely rebuilt less than 2 weeks ago, so really, WTF?) and the HVAC guy will be repairing our return duct (which is somehow not attached…) so we can run the furnace.

Temperatures here in the greater Chicagoland area dipped into the low 50s last night. When I woke up this morning, it was 62 degrees in this house, thanks to the combination of not having a working furnace and having windows with broken seals. At least now, it’s warmed up to 70 in here.  We gotta get this shit fixed ASAP. We have to be ready for snow.

Other than that, not lots is going on with me.  I want to make some friends in the area, and am sort of at a loss for how to do so. There doesn’t seem to be an active Orland Hills/Orland Park/Tinley Park mommy group on Facebook or Meetup.com like there is in Chicago proper.  My inner entrepreneur says, “Just start the group, and they will come!”  but the most of me says, “UGH. MAKE ME SOUP AND TAKE A NAP ALREADY.”

I think I should probably listen.

Maintaining a Happy Marriage with MS

I spend a lot of time online, engaged in MS support groups.  Recently, there has been a theme in some of the groups that I find upsetting — and that theme is complaining about husbands/caregivers.  The women who engage in this think that because it’s a support group, they can complain about their partner without any sort of judgement or negativity coming their way, and oftentimes, they’re correct.  These are support groups after all, not group therapy sessions.

My most frequent contribution in discussions like these is to suggest couples counseling, but, on the other side of the screen, I’m almost always thanking God for my husband, Adam, and thinking about all the things we do to make our marriage work while enduring MS together.

Truth be told, Adam has taught me a lot about the meaning of unconditional love, teamwork, and intimacy.  I think one of the best ways I can repay him for that is to share some of his lessons with you.

How to Have a Happy Marriage With MS.

1.) Make MS the third wheel that it is.

notyourdiseaseI love Adam, and Adam loves me. But we both hate MS.

He’s seen what it does to me more than anyone else has. In fact, he was holding my hand when the doctor gave me the diagnosis.  He has reminded me, innumerable times over the 8 years that I’ve had this disease, that I shouldn’t internalize or own this disease. MS is not a part of who Rachael is. I didn’t ask for it. I didn’t cause it. I don’t want it. He reminds me that if it were a head cold, I wouldn’t apologize for having to take medicine or needing to rest.  He doesn’t see it any differently.

So, when I tried, several times, to push him away while we were engaged so that he would leave me so that he wouldn’t have to deal with having MS, it was silly to him. Neither of us want MS in our lives, but neither of us can imagine life without each other.

Who you are is how you react to the challenges that MS throws in your way. You are not MS. And to have a happy marriage, your partner needs to know that.  They also have to help you fight it.

2.) The Golden Rule Is ALWAYS In Effect.

GoldenRule-2Did your partner leave dishes in the sink, or even all around the kitchen? Take a moment and think before you gripe at him or her about it. Would you want to be chided for not doing chores? Of course not! So just do what needs to be done, and allow them some grace.

The same thing goes for allowing grace within your relationship for hard times caused by chronic illness.  Would you want someone to put you down for not being able to work?  Of course not!  You’d already be wrestling with shame yourself.  So, don’t make your disabled partner feel worse about themselves.

This doesn’t mean, however, that you should be a doormat or be doing all the work all the time — which brings us to #3.

3.) You Are A Team. Act Like It.

nowinnerWhen you got married, you started a family.  It’s you and your partner versus the rest of the world. Even the law acknowledges that spouses cannot be forced to testify against one another because it would be like testifying against themselves. In community property states, they have codified the idea that “what’s mine is yours” in marriage.

So don’t ruin your intimacy and happiness by playing tit-for-tat games or being consciously passive aggressive.  You don’t help yourself or your partner when you start comparing things between the two of you or expecting your partner to read your mind. Ask for the things you want, and give of yourself to them generously.

4.) Engage In Good Self-Care — Both Of You.

selfcareThere have been times when Adam has told me that the best thing I can do to make him happy is to make sure that I am safe and am taking good care of myself, because it means he doesn’t have to worry about me when he’s at work.

As someone who deals with MS and seizure disorder, it’s my job — my #1 job — to minimize the effects this illness has on me and my family.  It’s Adam’s job to support me in doing so.

This means that I make and keep regular appointments with my various doctors (and he helps me get to those appointments and to remember what the doctors have said), set alarms to remind me to take my pills on time (and he follows up to see if I have taken them), do my best to eat healthfully (and he joins me in the effort), get regular exercise, meditate daily, and talk with a therapist when I need to.

Adam takes good care of himself too, maintaining his health, acknowledging when he needs to rest, and calling friends and family when we need extra help.

When you take the time to take good care of yourself, you make things easier for your partner, whether you’re the one with MS or the one who is a caregiver.

5.) Practice Gratitude.

spousegratitudeOne of the things that I am acutely aware of is how much Adam does for me.  This is not because he has said to me, “Do you realize I’ve done XYZ?” but because life runs so smoothly.

I know all the things I want to do to help out around the house and can’t always get done because of fatigue or seizures, and I acknowledge how much work goes in to all the things he does to keep our family comfortable.  He works full time. Most nights, he cooks dinner. He runs all the chores that require a car. And I honestly can’t remember the last time I took out the garbage.

Every night, just before we fall asleep, right when we’re cuddling, I make sure to thank him for at least one thing that I can think of that he did that made my day better.  Sometimes, it’s as simple as, “Thank you for making a delicious meal.” and other nights, it’s more like, “Thank you for working so hard, for so many years, that we were able to save up and buy a house.”

Our marriage is happy, not just because I recognize all of his hard work, but because his response to me is almost never just, “You’re welcome.” Most nights, he’ll thank me for something specific as well or to let me know that I had a hand in his success.

Does he need the praise? Probably not.  But he deserves it, and taking the time to show appreciation to one another goes a long way during times when things are difficult.

6.) Foster Intimacy

A big complaint that I hear a lot about in support communities is the lack of sex that happens when you have MS.  Let’s be real here — there’s nothing sexy about fatigue or numbness or pain or cognitive fog.  So we have to work harder to keep any kind of passion in our relationships.

You can’t fake the funk when it comes to sexytimes. If you do, you get caught up in the bad sex loop.  You force yourself to have coitus. You don’t enjoy it because you’re too busy thinking about how your body feels or how uncomfortable you are with the situation. Then the next time you’re ready to get busy, you worry it’ll be bad this time because it was bad last time, because you couldn’t stop thinking about all of the things. The bad sex loop is treacherous. And it doesn’t just hit folks with chronic illness.  Even Coupling acknowledged The Melty Man.

So, take the pressure off, and quit focusing on your illness.  Even perfectly healthy couples go through dry spells. Heck, maybe you just had a baby and are healing from a c-section. That’s 6 weeks of mandatory celibacy!

There are all kinds of things you can do – from backrubs to breathplay, phone sex to making bucket lists together – the options for improving intimacy are damn near endless, and there are a ton of articles with suggestions to help you out.

7.) Refuse To Give Up

galaxyquestLastly, and perhaps most important is honoring the commitment you made to one another.

People grow and change with or without illness as a complicating factor in a relationship.  It takes two people working together to make a happy marriage. It only takes one partner working against it for it to fail. You have to both want it. You have to have both meant it when you said that you would be together for richer or poorer, through sickness and health.

Sometimes, this means that you need a marriage and family therapist to help guide you back to the relationship that you want and deserve.  There’s no shame in that.

Othertimes, you just need to step back, take stock of the situation, and correct from there. I personally am a fan of the Gottman method, and think if you’re looking to improve your relationship, it’s a great place to start.

—-

To my darling, wonderful, patient, hilarious, warm, helpful husband: thank you for being the inspiration for this post. I love you more than human thought can comprehend, and I can’t wait to see you when you get home from work tonight.

And to my sweet 4 month-old baby boy, thank you for napping long enough for me to write this. ❤

Quick Post

This post is gonna be quick, because I have no idea how much longer Henry’s nap will last. I’ve already eaten my lunch, so this is bonus time. Of course, as I typed that first sentence, he woke up. He’s doing the little blinky thing that says, “Maybe, just maybe, I’ll fall back asleep if you give me my binky.”

My kid is so good. He’s so sweet, and he only cries when there’s legitimately something to cry about (hunger, needing a change, having gas, or just feeling bad from vaccinations). But being a mom with MS is hard — and I know it’s only going to get harder.

I miss 5 Hr. Energy because I’m still pumping breastmilk. My legs desperately miss nortriptyline and weed; I’m having a shitton of muscle spasms recently. I miss the freedom to nap all day if need be. But I love my son, and his health and wellness is worth forgoing medicine.

The real mindfuck for me when it comes to medicine is that we’re already discussing a second child… have been since before Henry was born. The idea that I’ll have the energy/stamina necessary for caring for 2 infants is laughable to me, but what’s the alternative? Getting back on MS meds and then off them again? The side effects are often worse than the disease without them for me, so I don’t know that they’d make anything better.

Pregnancy was pretty great as far as dealing with my symptoms goes. Adam is a fan of the idea of waiting until Henry’s 6 months old and then trying for another. That’s 3 months from now. My OB’s assistant said it’s perfectly fine to get pregnant after 6 months because of how well I have healed, but that the doc would prefer that I wait 12, and that he’s a fan of VBAC if possible. While I wouldn’t want to deal with another c-section recovery (I’m only now feeling normal, 3 months later.), and I think it would be interesting to experience birth as biology intended, the possibility of uterine rupture with VBAC scares the crap out of me. I’m so risk-averse when it comes to childbirth that I can’t even quantify it.

I’m somehow less risk-averse when it comes to dealing with MS, though. My neurologist wants me back on DMDs as soon as I am comfortable with doing so. He has said that he’s not directly telling me to stop breastfeeding and to get back on DMDs right away, but that’s only because breastfeeding is such a personal choice. He wants me back on meds, like, yesterday.

If we do decide to go for a second child within the next year, I’ll be off DMDs for at least another 2 years – and that sounds good to me. I hate how my seizure activity increased due to pseudoexacerbations on Gilenya, and I don’t miss nightly shots and tender spots with Copaxone one iota. I honestly am unsure if there’s a DMD on the market that is actually helpful for me right now…. but I am also not sure how well I’ll be able to “mommy” two kids who would both be under the age of 3. (Read: not potty trained, and not good at talking)

The truth is, I have no idea what the right move is. I guess that’s the nature of life though, right? You roll the dice, you takes your chances. I do know Henry deserves a sibling, though. I can’t imagine my life without my brother, Daniel, and Adam loves his 3 brothers. So, we’re definitely gonna have another kid, it’s just a question of when. I’m 34 right now. If I wait much longer than the suggested year, fertility could potentially become an issue, and we really don’t want to deal with that.

Hey, maybe we’ll luck out. Maybe, my MS will be stable without treatment, we’ll wait til next year to start having a second child, I’ll have the little one when I’m 36, and by the time I’m done breastfeeding, there will be a new, more effective, less awful MS treatment out on the market. That’d be awesome.

And speaking of awesome: can I get some cheers for the power of the paci? Kid fell right back asleep. That little piece of plastic is got-dang magic. Now, of course, the dog is scratching at the door that he needs to go out. A mommy’s work is never done.

A Decemberween Miracle!

decemberweenmiracle

Woah, posting twice in a week?!  IT’S A DECEMBERWEEN MIRACLE!!! Since my last post, I’ve done a lot of reading, talking to family and friends, and thinking about things, and I figured it’s a good idea to update.

Stem Cell Things

So, first thing’s first – stem cell transplants are making a splash in the MS community. CBS published an article discussing the positive effects of stem cell transplants for those of us with MS.

“In a small clinical trial [currently in year 3 of 5], patients experienced long-term disease remission after undergoing a transplant of their own hematopoietic stem cells.” …

“The researchers found that nearly 79 percent of the patients who underwent the procedure sustained full neurologic function for the three years following the treatment and symptoms of their disease did not progress. Additionally, patients in that time period did not develop any new lesions related to their disease.

More than 90 percent of patients did not experience disease progression, while 86 percent did not have any periods of relapse. Though a small number of patients did have side effects from the immunosuppressive drugs, they were no different than the side effects typically experienced by MS patients taking the drugs who haven’t undergone stem cell therapy.”

While I think this new research is awesome, I’m curious about what the control group looked like, and whether they were on a DMD. RRMS is a tricky sonofabitch because it’s different in every patient and we still don’t know what causes relapses!

It did, however make me think pretty hard about the cord blood banking issue, because these folks used their own adult stem cells, which makes me think that banking the cord blood might not really be necessary.

Private umbilical cord blood banking is crazy expensive. Even the least expensive option, ViaCord, is ~$1500 with a recurring fee for storage. At first, I thought, “Wow, we have to do this for our kid’s wellbeing!” …but then I started getting stuff in the mail, a ton of spam email, and pamphlets every time that I went shopping for maternity clothes. More and more, it started looking like it might be a scam.  So, I did the research — and the truth of the matter is that it’s an extremely expensive insurance policy.

“[A]ccording to most experts, the odds that a child will ever use his or her own stored cord blood are small. According to a 2005 editorial in the journal Obstetrics and Gynecology, the chances are about one in 2,700.

Other estimates range widely. Advertising from one private cord blood bank puts the odds at 1 in 27. The American Academy of Pediatrics suggests it’s more like 1 in 200,000. Indisputably, there are very few documented cases of a child receiving his or her own banked cord blood as treatment. The Institute of Medicine says that there may only have been as few as 14 total of these procedures ever performed.” —WebMD

So, after a lot of thought, talking with my husband and family, I’ve decided to find out what stem cell bank the University of Chicago Medical Center works with most closely, and to donate the cord blood to them.

If, in the future, the kiddo or I need stem cells, that’s what those public banks are for! I see no reason to hoard potentially life-saving cells when there’s a better chance of winning big on a lottery scratcher than our kid needing those stem cells.

Cloth Diapering MADNESS!!!!

For the last several days, I’ve been learning about cloth diapering. Or, now that I’m in-the-know and part of the cool kids’ club, I suppose I should call it FLUFF.

At first, I was really overwhelmed at the sheer amount of information needed. I naievely thought there were 2 options – disposables and cloth diapers. NOPE. There are disposables… and then there are NINE different types of cloth diapers. NINE!  (flats, prefolds, fitteds, contours, hybrids, pockets, sleeves, all in ones, and all in twos!) I’d be lying if I said I didn’t still feel a little bit overwhelmed with choices.

Truthfully, I’ve had moments over the last couple of days where I’ve thought that it’d be worth it to use disposables if for no other reason than it meant that I wouldn’t have to keep learning about diapers.  But then I realized that thinking that way was not helpful. It was the first time I had to tell myself, “Don’t be a lazy parent.”  It probably won’t be the last.

From everything I’m reading, it looks like these 3 choices are likely the way we’ll go – either prefolds w/ a cover, pocket diapers, or all-in-twos.  I like the snap feature of the all-in-twos, but I’m gonna have to see about the washing routine with each of them before I make up my mind.  And even then, if I make up my mind, there’s no telling whether or not it’ll be the best fit once the baby comes along.

Sure, cloth diapering is more economical in the long run, and it’s better for your kid’s skin and the environment. But let’s be real here… it’s all about fashion. Disposables have nothin’ on these.

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Food-type Things

It’s getting towards the new year, which for most folks means New Year’s Resolutions. What’s the #1 resolution?  GET FIT & LOSE WEIGHT!
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Fortunately for me, being pregnant  means I don’t need to worry about losing weight this year. Of course, that doesn’t mean that I can’t improve my diet. Today, my good friend Annie asked if I wanted to join her for a 30 Day Green Smoothie Challenge, and I agreed.  I’ve gotta find a way to get all my veggies in! The kiddo seems to only want me to eat pizza, pickles, and ice cream. Not the healthiest! At least he’s not causing the same cravings that I did to my mother… which would be eating scrambled eggs on top of pizza! Then again, it’s only week 22, starting tomorrow. There’s all sorts of time for crazy cravings! 🙂

I’ve read about women who are able to continue the paleo diet while they’re pregnant, and I have to say, my hat’s off to them! I’ve been surviving on greek yogurt, whole wheat bagels, carrots w/ french onion dip, french fries, cheese bread (pizza), burgers, macaroni & cheese, and ice cream. I can’t seem to get enough dairy. It’s so unusual for me, so I’ll be grateful to get smoothies back into the rotation.

Speaking of food… dinner should be here any minute, so I’m gonna log off for now. Hope you’re all having a good day! ❤

Wooooooahh! We’re halfway there! Woooaaaahh! Livin on a prayer!

21 Weeks!

Officially, we’ve hit the halfway mark on this pregnancy.  Sure, full term is 39 weeks, but it can also go as far as 42 weeks, so I’m calling this halfway.

Wanna see the newest pic of our little wiggleworm?  Here you go! 🙂

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I love this picture because he already has so much character. He’s sucking his thumb, and has his other arm stretched out behind his head, just chillin’.  I really hope this is a portent of things to come.

Yes, I know that his hand kind of looks like a foot, but I trust the tech when she says that it’s his hand. She took pictures of his feet too. 5 fingers and 5 toes on each limb! His heart and kidneys look good too. I’m so excited that he’s developing well.

Oh yeah, and there’s also this other little thing I haven’t announced… we know he’s a boy! 🙂  I would post the ultrasound picture that confirmed that, but I don’t want to be the mom who posts pictures of her son’s genitalia on the internet before he gets the chance to make that mistake himself.

The “fruit of the week” to show baby size is either a pomegranate or a banana. I find this perplexing, as the two are very different shapes. At least they agree that the average size is 10.5 inches and 12.7 oz.

I found some weekly questions that I thought might be cool to share with everyone.

Total weight gain/loss: None! Not since conception. Doc’s not worried about it, so neither am I.

Maternity clothes? Um, YES. Belly panels are the best. I might not ever go back. I mean, it’s like having built-in SPANX that make your clothes more comfortable. Why don’t all plus-size pants have these?

Stretch marks? Not yet!

Best moment this week: A tie between turning 34 and Adam surprising me with a Snoogle!

Miss anything? DEAR LORD, YES. I was really sick this past week, and I have really missed decongestants.  I also missed wine at Christmas dinner.

Movement: Loads! He seems to like to wiggle the most when I lay down to go to bed or when I wake up first thing in the morning.

Food cravings: pickles

Anything making you queasy or sick: Not really, but I’m still afraid to try turkey again. It made me so violently ill during my first trimester.

Have you started to show yet: Yes and no. Adam can definitely tell, but other folks might not be able to see it. If I’m naked, you can totally see the roundness of my lower belly, and how much my waist has changed — but with clothes, I just look like I did before I lost weight in order to conceive. The plus side of that is not having any new stretch marks, and still fitting in all my t-shirts.

Labor Signs: Had my first Braxton-Hicks contraction on Christmas day. MAN-OH-MAN do they suck.

Belly Button in or out? In

Wedding rings on or off? Off my hand, but on a necklace.

Happy or Moody most of the time: Mostly happy, with scattered showers of irrational, silly crying over things like cartoons or adorable baby clothes.

Looking forward to: having a big, round pregnancy belly

My Most Recent Adventure With Time Travel

Earlier this week, I had my first time travel seizure in months.  I guess I was due for it, since I’d been really sick for about a week.  Sure, MS goes into remission when you’re in your second and third trimesters, but, sadly, that doesn’t preclude pseudoexacerbations.

I thought it was February of 2013 and couldn’t figure out what was wrong with my tummy, and why it was hurting. I thought I was having some kind of awful gas. (Of course, I was feeling the baby moving around!) Adam asked, in response to my question about what was wrong with my belly, “What’s our goal for this year?” and I said, “To not want to kill myself?” at which point he realized that he was thinking of 2014…and that I was further behind.

The follow up was him showing me ultrasound pictures and me crying and asking him how on earth I’m going to be a good mom if I can’t stop thinking about suicide. He assured me that I’ve gotten much, much better. After the confusion lifted, I was very relieved to have done all the hard work in therapy and continued with good daily mental health habits.

Amusingly enough, I’m halfway through this pregnancy and am actually smaller in size than I was in 2/2013. I was amazed that I could have life inside of me and be “so much smaller.” I was my heaviest then, weighing in at 30 pounds heavier than I am now.

All the things!

As the big day ekes ever closer, I find myself starting to think about things that previously fell under the heading of “Eh, we’ll worry about it closer to time.”  Things like finding a pediatrician (?!?), making a short list of doulas to interview, budgeting for all of the things, making a baby registry (God bless you, Amazon, for having a universal registry.), planning for a nursery, and creating a guest list for the baby shower.

Baby Shower Guest List
Honestly, I don’t even know how to go about putting together a guest list for the baby shower. Most of my friends and family are scattered all around the country. Is a virtual baby shower a thing? Can I Skype/Google Hangouts/Live Stream the shower? What’s the etiquette on that? But more over, does the etiquette even matter, so long as I’m genuine in who I want to include and grateful for whatever gift they give – whether it’s their presence or their presents? I mean this is me we’re talking about. I’m not exactly known for following convention, and I want to include as many people that I love as possible because celebrations like this are rare and awesome. I just also don’t want people thinking that they’re only invited because I want stuff. That’s not the case at all. Then again, anyone I want to invite probably knows me better than that anyway.

Cord Blood Banking
I’ve also started reading up on things like, “what to pack in your hospital bags for you and baby” and whether or not I want to blow ~$3000 on cord blood banking. I mean, as someone with MS, I definitely see the benefit of having my kid’s stem cells available to him. On the other hand, tons of people opt to donate their kid’s cord blood, making it available to people who need it. It’s a much less expensive option, and seems to me like it would be a mitzvah. There’s no telling whether my baby will ever need his extra stem cells, so spending a bunch of money to hoard them for him seems like it might not be the best use of our money.

Then again, there’s a part of me that wonders if I could use those cells, since stem cell therapy has been proving very helpful in the fight against MS. That part of me feels, oddly, like I’m somehow being selfish even thinking that it might be an option. But then again, I’ve grown those cells. That umbilical cord is as much mine as it is his. *shrug* I can’t even begin to understand myself on this topic. I’m hoping my husband and parents will have some helpful thoughts.

The Great House Hunt
And then there’s the whole “finding a house” thing.  Adam is still hopeful that we’ll find the right house for us before the baby is born. I am much, much less hopeful. In fact, I would say that I’m sort of against the idea of moving at this point. My parents are going to be in town for the first month that the kid’s around and they’ll be staying less than 20 minutes from where we are currently residing. The idea of moving is just too stressful and complicated for me right now.  Right now, I just want to figure out how to keep this apartment clean on a regular basis and somehow fit all the baby things in here.  My best guess is that we’re going to need to either get a storage unit for all the already-packed boxes we have, or unpack and sell a ton of stuff that we clearly don’t need (since it’s been sitting in boxes for months).

Clean, Clean, Clean
The need to nest is real. Every day, I wake up and think about all the cleaning and organizing I want to do and then am thwarted by my body’s limitations. At least I’m regularly getting the dishes put away and the laundry done, folded, and mostly put away. It’s becoming increasingly frustrating to bend over and pick stuff up. I am sure it’ll only get worse as the baby gets bigger. Maybe there are some ab exercises I can do to make that better.

Too Hot For My Own Good.
Also, I’m surprised that TV and movies don’t make more fun of how disgustingly sweaty you get during pregnancy. I swear that it’s comical. I’m deeply in love with the Kool Max® Deluxe Cooling Neck Tie that I was gifted by Polar Products. It’s currently 70 degrees in my apartment, I’m in barely any clothes, and I’ve got it on because I can’t stop sweating. Adam, on the other hand, is enjoying his sweatshirt.

Usually, I try to find some kind of witty way to end a blog post, but I’ll be honest with you: today, I’ve got nothin.  Hope you and yours are doing well and that you had happy holidays and are headed for a very happy new year!

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A Very Cold Love Story

My Review of the Cool58™ Secrets Vest

A while ago, I picked up the Cool58™ Secrets Vest from Polar Products after spending a lot of time researching cooling vests.

It wasn’t bad! A few weeks later, I received a request from the company to write a review on their site.  I know several of you were interested in learning about whether or not it was a good investment as well, so I’m sharing the review here as well. This was what I wrote.

“Great for large-chested women with MS!”  
Details: I got the Cool58 Secrets Vest because most of the other cooling vests were more like traditional vests – they went over your shoulders and chest. Personally, I am a large-chested lady, so finding a vest that would have a snug fit was challenging. The Cool58 Secrets Vest is great in that regard. It fits comfortably on my abdomen, above my belly button and below my bra. It’s easy to sit while wearing it, which makes it ideal for bike riding and use at the gym.So, why a 4 and not a 5? A few minor things. First, I’m not sure that the upper abdomen is the most effective spot for cooling the body. Depending on the kind of bra I’m wearing with it, I sometimes still end up with sweaty boobs and 1 inch lower have a cold tummy. It’s a weird feeling. Secondly, for me, it doesn’t cool enough on its own to be a stand-alone. I almost always end up grabbing something to put on my neck to help in addition. (So one of their kits might be good to try.) Lastly, it takes a while for the packs to “freeze” if you use the refrigerator instead of the freezer. Since I’ve ended up using the freezer anyway, I kinda wish I’d gone with the Kool Max Secrets Vest.At the end of the day, it’s great to be able to walk around in the heat without MS kicking my butt. My complaints are honestly minor.

You Can’t Ask For Better Customer Service Than This.

You can imagine my surprise when I received this email the very next day:

Thank you so much for writing a review about your Cool58™ Secrets Vest! We really appreciate you taking the time to share your thoughts with other customers.

It sounds like you might be interested in the Kool Max® Packs, since you are freezing the Cool58 packs. I would be happy to send you four to try in your Secrets vest. Let us know how you like them in comparison to the Cool58 packs!

Thank you very much for your business, and if there is anything you need in the future please let us know.

Warm regards,

Erin
Polar Products, Inc.

I was over the moon!  A few days later I received not only 4 Kool Max® Packs that fit into my Secrets Vest, but also a Kool Max® Deluxe Cooling Neck Tie! I was shocked and excited.

How do I love thee, neck tie? Let me count the ways…

cervicalcollarPrior to receiving this gift, I had used an Elasto-gel Cervical Collar to cool my neck. I loved it! But it didn’t last more than a half hour, which is fine if you’re just using it after going the chiropractor, but not the best if you’re battling heat sensitivity.

In contrast, the Kool Max® Deluxe Cooling Neck Tie is freakin awesome in terms of how long the cooling power lasts. Truth be told, I haven’t tried wearing it longer than an hour or so, but I didn’t take it off because it had lost it’s cooling ability – I took it off because I was cold! And even better, it didn’t look nearly as weird to wear out in public as the Elasto-gel Collar did.kooltie2

I wouldn’t use the neck tie as my only cooling device if I was going to the gym or hanging out in weather that’s hotter than 80 degrees, but when it’s in the 70s or below (or if I’m inside and in air conditioning), I don’t even think about putting on the Secrets Vest anymore, it’s so intensely cold. It gets the job done on its own, and makes doing the dishes so much easier for me.

Another thing I really like about the neck tie is that you can easily take the Kool Max packs out of the tie to wash it — or to use the Kool Max packs with another tie/scarf!  You don’t *have* to use the tie, though it is convenient. If you’re trying to look your best, you can even wrap those packs up in a fashion scarf that you have that won’t be damaged by water condensation. (No silk!)

Kool Max® vs Cool58™

The Kool Max® packs are *so* much colder than the Cool58™ packs. The difference is actually kind of stark. Come to think of it, there’s probably a difference of 58 degrees.

You can activate the Cool58™ packs, put em in the vest, and put the vest directly on your skin and it’s still comfortable. They’re designed to stay at 58 degrees. It’s a calming kind of cool — like drinking a nice iced tea on a hot summer day. It’ll cool you down, but it won’t make you cold. The stuff inside the Cool58™ packs will even squish and break apart if you press on it. The stuff inside the packs acts kind of like a wax.

Not so with the Kool Max® packs! They’re essentially blocks of ice, and are just that cold. You actually need a t-shirt or something under your vest or it can be too cold to handle. And that’s not a bad thing – especially when you’re trying to have an effective workout! 🙂 Wearing a shirt under your vest also keeps it cleaner longer.

At the end of the day, for folks like me who immediately get MS symptoms as soon as they’re a degree over their normal body temperature, I would recommend the Kool Max® line over the Cool58™ line every day of the week, just for sheer intense power of cooling. And I definitely would go for a neck tie, because I honestly didn’t even realize how incredibly helpful they could be.

For folks who don’t have MS and are looking for something to keep them cool at the gym, I think Cool58™ is a great solution. For folks with MS, Cool58™ is great if you’re trying to stay cool for short periods of time, are indoors, or aren’t being very physically active. Otherwise,  Kool Max® works like gangbusters.

Thank you, Polar Products!

I want to take a moment to thank Polar Products for giving me the opportunity to try their other line of products and review them. This experience has been very valuable, hopefully not only for myself, but for other folks who are debating on whether or not to get a cooling vest because they can’t decide what kind! (And to those folks, I say, “Quit debating! Get a vest! They help!”)

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There’s Never Been A Better Time To Have MS.

My good friend Katherine likes to say, “There’s never been a better time to have MS” when we read about the research and treatments that are coming out to help those of us who suffer with this disease. This last week, however, has been gob-smacking amazing. This week has shown us some real steps forward towards curing MS.

Scientists find “off” switch for auto-immune function.

Yeah, you read that right. Researchers out of Bristol University have discovered how to stop our immune systems from attacking our own bodies. You can read all about it here.

“Scientists were able to selectively target the cells that cause autoimmune disease by dampening down their aggression against the body’s own tissues while converting them into cells capable of protecting against disease.”

This news is ridiculously fantastic because, if their findings are correct, it doesn’t just mean an end to multiple sclerosis, but an end to (or at least effective treatment for) 159 diseases.

To give you an idea of the scope of how many people that affects positively, it’s estimated that 2.5 million people in the world have multiple sclerosis, and it’s considered one of the more rare autoimmune diseases. Crohn’s disease is estimated to affect twice as many people… and in 2010, there were an estimated 34 million people living with HIV. So right there, with only 3 diseases being represented, you’re looking at 41 million people who have a reason to be hopeful. That’s equivalent to the entire population of Kenya. To contrast, the largest city in the United States (New York City) only has 8.4 million.  Los Angeles has fewer than 4 million. Let that sink in for just a second.

But wait, that’s not all! Let’s repair some myelin, safely.

If it weren’t enough that they may have found a way to stop MS in its tracks, they also may have found a way to reverse the damage without horrific side effects.

BIIB033, a monoclonal antibody targeting the LINGO-1 remyelination signaling block, has passed phase 1 safety tests.

“The anti-LINGO-1 trial is likely the first of many that will test drugs that have been shown to enhance remyelination in [mouse] models,” wrote Pedro Brugarolas, Ph.D., and Brian Popko, Ph.D., of the University of Chicago, Illinois, in the editorial. “Soon we should know whether this approach will provide benefit to patients with MS, which would be the first evidence that enhancing myelin repair may alter the course of this disease.”

So not only can we possibly stop MS from progressing, but we might be able to heal the lesions that it created and return lost function. The only thing left would be to stop it from ever occurring in the first place.

But wait, there’s more!

So we can stop auto-immune function, and there’s hope that we can repair myelin… but what if repairing myelin doesn’t get the job done? That’s where technology comes in.

Scientists have been able to bypass the spinal column non-invasively and trigger walking. You read that right. In the last two weeks scientists have also figured out how to help parapalegics regain use of their limbs. Read all about it here.

Japanese researchers have created an “artificial neural connection” (ANC) from the brain directly to the spinal locomotion center in the lower thoracic and lumbar regions of the spine, potentially one day allowing patients with spinal-cord damage, such as paraplegics, to walk.

We live in SUCH a cool time. I’m very hopeful for a future where no one has to suffer from MS at all.

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Mostly Better

It’s been a week. My last entry happened on a day when I had more than 20 seizures. I’ve learned that if I’m that incapacitated by seizures, I’m definitely having an MS relapse. I called my neurologist to follow up, and he called in a medrol dose pack on Friday afternoon. The effect was damn near instant. Thursday: 20+ seizures, Friday prior to meds: 13 seizures (I took the first day’s worth after dinner), Saturday: 0 seizures. NONE. Not one.

I wish I could say that I haven’t had any since Saturday, but that wouldn’t be true. Yesterday I had a couple, but they were simple partials (facial twitches), so I’m not worried about them. I’ve come to the point in my experience having seizure disorder where 1-2 simple partial seizures a day doesn’t feel like any big deal to me at all. Today, so far, I’m good. Maybe that means that tomorrow I can get back to the gym. I’d really like that.

Doing The Right Thing

Sometimes, I do the right thing without even realizing that I’m doing it. It always makes me smile when that happens. Take that letter that I wrote myself last week, for example. Apparently, science has proven that writing yourself compassionate letters is good for your mental health. It stops you from ruminating on the negative and allows you to take positive action. (Like taking a much-needed nap!)

Today, I’m doing my best not to ruminate on an irrational concept that a friend brought up in reference to herself. She said that she didn’t want to live a mediocre life.

A Mediocre Life? There’s No Such Thing.

For whatever reason, reading the phrase “living a mediocre life” felt like a punch in the chest. The idea that I might be living what she considered to be a mediocre life stuck in my craw. What upset me worse was the idea that I might think that I’m living a mediocre life.

I mean, I spend most of my days alone in an apartment, doing household chores and participating on social media.  It’s not exactly the stuff of legend.  Back in the day, before seizures, I used to be much more social and was very career-driven. But does a change from that way of being mean that my life is second-rate or ordinary? Since when has anything about me been ordinary?

Truth be told, I spent a significant amount of time in therapy wrestling with the question of why I’m even alive, if I’m not doing anything important. The answer to that question was remarkably simple: Because it’s better than the alternative! And, besides, how am I supposed to accurately know what is or isn’t “important” in the grand scheme of Life, The Universe, and Everything? That requires a level of objectivity that no human can possibly attain.

So, sure, I’m not living life the way that I had hoped for myself. So what? What person living with a chronic illness is? Hell, I’d go so far as to wager that no one is! We all deal with shit being thrown at us that we neither expected nor wanted, and we deal with it. Does living a life that is different from the one “of my dreams” mean that my life is inferior, insignificant, or of poor quality?  No, it doesn’t.

Just Because You’re Not Living The Life Of Your Dreams Doesn’t Mean You’re Not Living Well.

There’s so much pressure in our society to stand out and be considered important, and it’s totally unnecessary. It comes from our constant consumption of narratives: TV shows and movies and books. And most of these narratives are fictitious. In real life, we’re each the protagonist of our own story, but none of us knows the whole story because it’s constantly unfolding before us.

Hell, the US military even capitalized on this idea by asking the question, “If your life was a story, would anybody read it?” in recruitment ads. It’s such a silly way of thinking. Comparing stories from our lives with other people’s stories based on entertainment value is fruitless. It’s a directive for misery. There will always be people who have it better and those who have it worse. There will always be people achieving more and those who aspire to far less.

I mean, let’s take a step back from the question of “Is my life mediocre?” and ask an even more important question: who’s judging? Society? The media? History? Why should I care what anyone (other than me) thinks of my life? I’m the one living it, and I’m proud of who I am. That’s what studying Tao is all about: the idea that your path is unique to you, and that you can’t do life wrong.

If we must put ourselves up for judgment, I think it’s better to focus on a set of objective metrics.

  1. Do you do something to learn and grow as a person every day?
  2. Do you engage in activities that contribute positively to your community, such as philanthropy, charity, or advocacy?
  3. Do you treat yourself and others with kindness, compassion, and respect?
  4. Do you make an effort to use your unique talents when you’re able to?
  5. Do you take time to express gratitude and to appreciate the people and things in your life?
  6. Do you share your knowledge with others? Everybody knows something you don’t! It’s one of humanity’s greatest gifts!
  7. Do you make an effort to be empathetic and honor the experiences of others?

I think that if you can say “yes” to those questions, then you’re living a life you can be proud of.  And to be honest, even if you can’t answer “yes” to all of them, it doesn’t mean that your life is mediocre.
 

Shake It Off

Today’s earbug is a pop song by Taylor Swift. I usually don’t like her music, but I’ve had this song stuck in my head for a few days, and it works with the theme of today’s post. I hope it makes you want to shake your booty too.