Tag Archives: seizure disorder

34 Weeks Into a High-Risk Pregnancy In the Wake of COVID-19

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

Ladies and Gentlemen, let me tell you: there’s never been a more ridiculous time to be anywhere from 3 to 8 weeks away from delivering a newborn.

Only a woman who was diagnosed with and disabled by seizure disorder caused by multiple sclerosis 2 weeks before she was scheduled to take the bar exam could look at this shitshow of a situation and find herself laughing. But, you know, if you can’t laugh at the absurdity of life, you’ll just end up crying. And with these hormones, and the difficult decisions I’ve been faced with, I’ve been doing that too from time to time.

For those of you who are uninitiated in the process of enduring a pregnancy, 34 weeks is damn near done with your pregnancy.  You’re at the point where, if you’re high risk, you have to see your obstetrician every week to check on the baby. If you haven’t packed your hospital bag (I haven’t), you’re behind the curve.  Why? Because you’re likely to give birth anywhere between 37 (early term) and 42 (late term) weeks. And the closer you get to “full term” (39-40 weeks), the more likely it is that you will naturally enter labor. [1]

This is where things get “fun” for high-risk mommies-to-be in this season of imminent doom. While everyone is being told to shelter-in-place to avoid contracting and spreading COVID-19, we are still expected to come to the hospital for weekly check ups for the health and well-being of our babies.

We know, every time we go to the hospital, that it means risking infection, and that even if we’re asymptomatic and otherwise do not leave our homes, we may still transmit the virus to our spouses and/or children.   We also know that every time we go to the hospital, it might be the day where they say that there’s an issue with our little one, and that the baby needs to be delivered immediately. As someone with primary immune deficiency, I am hyper-aware of how likely it is that I will be come infected, and thus wear a N95 mask anytime I’m at the hospital.

For our family, it also means I cannot drop my 4 year old son off at his grandparents’ house and have my husband by my side for any of these appointments. My in-laws (grandmother, grandfather, and great aunt) are in their 60s and 70s, and they have too many medical complications that would mean a higher likelihood of death if any of us were to accidentally transmit the virus to them.

Of course, I also cannot drive because of seizure disorder. My husband is the only person who can drive me the 45 minutes to the hospital, safely. This also means that without any other family living with us, my son has to come along for the ride and wait with him for at least an hour in the car. While I still am allowed to bring my husband with me (as my 1 support person) to the ultrasound test, with the current protections for COVID-19 in place, my son is not even allowed in the hospital to go to the bathroom.

[Edit: Less than 12 hours after I wrote this, I received a phone call from the hospital, informing me that I am no longer allowed to bring my husband with me to ultrasound tests, and that they anticipate in the coming weeks, that he will not be allowed in for delivery or recovery.]

Normally, at 34 weeks, my high-risk obstetrician would have me do a weekly non-stress test to make sure that the baby is getting enough oxygen. Typically, a non-stress test is recommended when it’s believed that the baby is at an increased risk of death because of a mother’s physical condition.[2]

We started the NST process at week 30, but by week 32, the coronavirus had reared its ugly head in Chicago, and processes were changed. Now, we only do an ultrasound to check fetal movement, heart function, and to see if the baby is taking “practice breaths.” If the baby doesn’t pass, I would move to NST, and if that fails, to delivery.  But if the baby wiggles in the right ways, I head home without a non-stress test and without seeing a doctor.

Apparently, I won’t be seeing a doctor until week 36. At that point, I’ll have gone 6 full weeks without seeing a doctor. For someone with seizures, chronic hypertension, and immune deficiency, it is an unusually long time to go without in-person care — longer than any other time during my pregnancy, including first trimester.

When I do finally see a doctor, it’s not going to be the high-risk OB who I have a relationship with. Even though Dr. I was the practitioner my husband and I chose for my care — the same amazing physician who delivered my son in 2015 — he is old, in his 60s at least, and is entirely avoiding the hospital to remain safe from the virus.  So, I will be meeting someone new at the beginning of April, who will, ostensibly, be responsible for helping me to deliver.

Of course, it’s customary around Week 36, whether you’re healthy or not, to be talking with your OB about your “birth plan.” If there’s anything I’ve learned from living with multiple comorbidities, it’s that the Universe laughs when we make plans.  Flexibility is the key to survival (and maybe even happiness) and rigidity to expectations equates only to pain and unnecessary suffering.  Guidance from that lesson is exactly why I’m changing the “birth plan” that’s on my chart.

See, because of COVID-19, partners are not allowed in the operating room if you’re having a c-section.  There’s no PPE (personal protective equipment) for them. To be entirely fair, there’s not enough PPE in the hospital for the staff, let alone birth partners. Things have gotten so bad that my hospital is begging for donations. I will be sewing some masks for them. My only fear is that the fabric I have is too porous — but considering that the CDC is telling nurses to wear bandanas over their one-a-day N95 mask, I figure something is better than nothing.

Anyway, current protocol at the hospital allows for one support person for women who are attempting a vaginal trial of labor (traditional delivery), and even though Dr. I said that there are some very scary possible problems that can occur when a woman goes for a vaginal delivery after a cesarean, I have a reasonable chance of success.

I feel, strongly, that I owe it to my husband to at least try to make it possible for him to be there for the birth of our daughter.  The way I figure it, the most likely worst-case scenario is that I endure the pain of labor until they end up choosing to move me to the OR for an emergency cesarean, which was initially our preference anyway. Arguably, VBAC is a safer bet than a second cesarean anyway, since I only had the 1st one because Henry was breach.  It also would get us out of the hospital 2 days earlier, which, during a pandemic, really matters.

Of course, there are no visitors allowed, and hospital protocol is changing daily. If, suddenly, women are told that they will have to labor on their own (as they are in NYC currently), you can bet your ass I’m going to be signing up for a planned second cesarean in a millisecond. I can withstand pain, but I doubt my ability to withstand the pain of labor without any emotional support.

[Edited to add: Oh yeah! I forgot that they cancelled all labor prep classes, so I’m learning breathing techniques and labor positions from YouTube videos!]

And then there’s other stuff to consider that we had not previously had to deal with: since COVID-19 has made travel unsafe (every gas station and hotel posing its own dangers), my parents cannot come in from Colorado to meet their granddaughter. This also means that they won’t be here to watch Henry. It means for their safety and for ours, I’ve had to ask them to stay home. It feels gross for all of us. I want them here. My mom was going to stay with us the whole first month. But now, my mother worries she’ll transmit the virus to me or the baby… and I worry for her and Dad picking it up in the first place, either on the road, on an airplane, at a hotel, or from us. I couldn’t live with myself if either of my parents died because of this birth.

When it comes time, and I go into labor, what are we going to do with our toddler?  Because of the weekly checkups, I worry infecting anyone who would help us. What family members do we believe are healthy enough that we would ask them to care for him for at least 3 days?  Do we trouble my husband’s brother who has 2 children and a wife who is enduring her own medical problems?  They’re already stir-crazy from the lockdown. Do we ask his other brother who has no kids? He still has to leave the house to go to work at a place with other people who have family members who have been exposed to the virus. Do we pray for the best and leave him with his grandparents?  There’s really no good answer.

And then there’s the existential dread: What if I die giving birth? I’m nearly 40, and according to the CDC, I’m more than 7 times more likely to die in childbirth than someone under the age of 25.  Women aged 40 and older die at a rate of 81.9 per 100,000 births. [3] I’m 39 and a half.

What if I survive labor and delivery and contract COVID-19 while in recovery at the hospital?  As someone with so many comorbidities, would they save me because I’m a new mother? Or would they decide that since I have multiple sclerosis, I’m not worth saving?  My home state of TN has already made the decision that folks with MS don’t deserve to live if they’re rationing care.

And then there’s this nightmare fuel: a NICU nurse tested positive for COVID-19, and now newborns on her wing are being placed in isolation. So, I not only get to worry about me picking it up, about anyone in my family getting it because I’ve got to go to the hospital instead of staying home, but I get to worry about whether or not my newborn will be tended to by a nurse who has it.  And with the lack of PPE, the likelihood of that is significant.

I’ve never, in my life, thought that a home birth sounded sane, let alone safer than a hospital birth… but here we are. And I am not a candidate.

So, for everyone who has hit me up over FB Messenger or text and asked, “How are you doin?”  This is the real answer.  This is what “fine” means.

It means I’m sitting with all of this, and I’m still raising a precocious, headstrong toddler and rationing the food in our home and helping friends whose mental health is failing them because they haven’t spent this many days in one place before.

It means I’m treading these waters while sharing information on Facebook about the mathematic reality of the oncoming storm and while vetting fact-checked, peer-reviewed studies and articles about the virus.  And advocating to free the prisoners in the concentration camps before they become death camps. And sharing funny memes.

It means that literally everything about life is harder and more frightening than it needs to be, not just for me, but for every mother-to-be with a disability while idiots (and by idiots, I’m talking about President Trump) still talk about how this is “just a flu” and that it only affects people who are old or sick (as though our lives are worthless).

It means I’m growing life inside me and protecting it, while privileged idiots like the governor of Mississippi actively work to make our lives more dangerous. While the talking heads on FoxNews act like it’s more important for people to get their hair cut and their nails done than for me to live. While the President tells people we’re going to have to “let people die” to maintain the economy.

It means that every day, multiple times a day, my existence is attacked, and I am charged with the sacred duty of standing up for my right to live.

“Fine” or “okay” is the only word I have for it.  Because “furious” or “disheartened” or “lost in grief” or “hopeless” are not good options for how to be while you’re gestating.  You know, stress isn’t good for the baby. (Really, it’s not. It affects their neurological development and likelihood to experience anxiety as they age.) So, paying attention to what’s going on, while it’s not optional, is also objectively harmful. And I get to feel guilty about that. (But, hey, I’m Jewish, so I’m practiced in this arena.)

So, I try to take breaks and do some yoga. I color and play games with my son. I cook some food. I take a not-too-hot bath. I focus on maintaining good mental health. I call my parents and remind them that I love them, because I never know when it will be the last time. And, for whatever good it does, I pray – not just for myself, but for the safety and well-being of us all.

Good Enough.

Posted in Just Life. by

Well, 6:30 a.m. rolled around this morning, and Henry decided that since Daddy was very obviously awake, he needed to be doing things too.  I would still be cranky about this if not for the fact that he is, mercifully, napping right now, which puts us on schedule for him to attend a Gymboree class at 12:30, assuming it doesn’t rain.

You know, life is funny. When you’re little, you rage against naps and against sleep. Fear of missing out is so strong that you can’t even comprehend why your parents want you to rest.  As a grown up,  I know that what I’m actually missing out on most of the time is… a restful nap.

The irony that I could be taking one right now instead of writing is not lost on me.

Ghosts of the Past

Social media never ceases to amaze me. Several days ago, I got a friend request from someone who used to be my best friend in the whole world.  When I say “used to be,” I mean that it’s been 25 years since I last saw her. We went to elementary school together, and after my family moved to Collierville, for all intents and purposes, I never saw anyone from elementary school again, and I was more than okay with that.

See, I went to a prestigious (read “snobby”) private school.  From 2nd-6th grade, my daily thought processes were consumed not primarily with learning, but rather, with an unrelenting psychological struggle for acceptance. On the one hand, I would desperately try to convince a bunch of rich little girls that I deserved acceptance, despite being of a different religion and socioeconomic background than almost all of them — and on the other, I would desperately try to convince myself that their acceptance was completely meaningless and empty.

In my ideal imaginary world, where I never ended up with MS or seizure disorder, I’d have made my mark by now as a rich and powerful entertainment attorney who also just happened to be happily married, beautiful as an adult, and energetic enough that I could still perform music on the weekends — you know, just for fun.  I could totally talk to the girls I grew up with and be like, “See. I am your people. Aren’t you glad you grew up with me now?”

…but I’m not.

I’m a disabled stay-at-home-mom who writes sporadically and doesn’t wear pink on Wednesdays. Mercifully, I’ve not only come to terms with that, but I’m actually pretty proud of it. It took years to get healthy enough to have Henry, and it takes concerted effort to carve out time to write.

Surprisingly enough, after I accepted her friend request, I found myself worrying about whether or not my life was “good enough.”  I openly questioned whether this person genuinely wanted to rekindle a long-lost friendship or if she was going to be headed to a reunion and she wanted some good gossip for everyone.

A day later, another elementary school classmate requested friendship, and I had to really consider whether or not I was going to accept.  It’s not like this request was from a former bully. This woman was the nicest (and prettiest) girl in class, and I didn’t even have an inkling of bad intention on her part — which really gave me pause.

In that moment, it hit me square in the face just how toxic and deep my shame is over the direction my life took after I was diagnosed with seizure disorder… and I had to figure out both why I was shaming myself and what I could do about it. My life is not a trainwreck people can’t help but stop to look at. It’s performance art.

Turns out that despite all of my years of growth as a person, my inner child is still classist, ableist, and misogynistic. She attended enough ballet classes, watched enough TV, and read enough magazines to know that she’s only pretty if she’s thin, important if she’s rich or in a position to help someone else social climb, and worthwhile as a person if she’s “contributing to society” through paid work, glamour, or widely-accepted art or music.

It’s a damn good thing that I’ve grown past those old ways of thinking as an adult.

So Much More Than Good Enough.

I accepted both friend requests, and I’m glad I did. It’s cool to know that my old bestie and the girl I was most impressed with while growing up actually care to know me as an adult. I’m curious to see who they’ve become too!  We’re all mommies now. That alone changes you a lot.

It’s even cooler to know that the good side of my early-life struggle finally won out. I give zero fucks about what other people think of me at this point. I would actually give negative fucks if that were possible. (Like, my fuck deficiency is so pronounced that I could really use some of yours. I might have to declare fuck bankruptcy.)  I’m also entirely certain that my father, upon reading this, will pump his fist in the air, and think, “That’s my girl.”

What matters is what I think of myself… and my record for awesomeness is pretty good. I’m well educated in interesting topics. I’m relentless in the pursuit of bettering myself as a person. I engage in community service, and I make an effort to have fun too. I’m raising a kid who’s not a little asshole, and my husband still grabs my butt after 10 years.

Altogether, I know that I am more than “good enough” for myself, even if I have to remind my insecure inner child of that. I try hard to be the kind of person I’d want to hang out with. And sometimes, that person needs to be someone who reminds you of how special you are.

I’m happy that these very old friends unintentionally gave me the opportunity to take a good hard look at the life I’m leading. I’m even happier with what I saw… because, really, how could I be anything but happy when I get to see this face all day?

hugabug1

 

Too many thoughts not to blog.

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

It’s been a couple of months since I last wrote. Being a mommy makes finding time to sit down at the computer tough. If FB and text wasn’t available on cell phones, I probably wouldn’t communicate with anyone other than Adam and my mom.

I just put Henry down for his nap, and even though I know I should go lie down too, I feel the need to write – so that’s what I’m doing.

There are sick people in this world. I’m one of them.

Truth be told, I’m feeling pretty rough today. My stomach is hurting really badly… like I swallowed something that’s eating me away from the inside. I’ve been having a hard time making myself eat or drink for the last 2-3 days, but I’ve been forcing myself.  Today, my stomach is hurting all the time, whether I’ve eaten or not. I’m debating making another appointment with my gastro team.

There’s definitely something amiss, and I’m becoming increasingly confident that it’s more than fatty liver. Last time I saw them, they ordered extra tests for immunology, and it turns out that I’m so deficient in immunoglobulin that they want me to see an immunologist.  That news was delivered to me a couple of weeks ago… and I’ve been waiting for their letter to arrive in the mail with their referral. That’s right, I haven’t made an appointment yet. I keep thinking this stupid thought: “Well, my MS is not progressing on MRI, so it’s probably a good thing that my immune system isn’t working right.”

Stupid. Ignoring health matters never makes them improve.

Today, my left foot is all tingles, the tops of my legs and my lower back feel like they’re on fire, most of my left chest is numb, and I am achy all over (on top of the tummy ache and headache).  Because it’s my special lady time, I’m inclined to just suck it up and bet that this is a pseudoexacerbation – but if it doesn’t go away in 2 days, I’ll call my neurologist and request steroids. I can’t not request steroids when I start having time travel (complex) seizures for more than 2 days.

Who needs The Doctor?

Yesterday, I “traveled” again… and the results were simultaneously eye-opening to me about myself and how badly I still need to work on self-compassion and how totally bizarre our world is at the moment.

See, yesterday, I woke up thinking it was 2009 and that I was supposed to take the bar exam in a couple of weeks.  The first thing I did, (Again, stupidly. There’s a theme here.) is check Facebook and try to get my bearings, since I was aware that I was dealing with post-ictal confusion.

This lead to me reading about the latest Supreme Court move that guts the 4th Amendment (Seriously, the damage to our civil rights that have happened in the last 30 years is staggering.), followed by a ton of people debating the 2nd amendment (Who honestly cares about the right to bear arms when our military is so big we could never hope to use force to overcome martial law at home? Or when cops can stop you for no reason at all just to check your status?  “Papers, please?” anyone?), followed by a ton of Donald Trump/Hitler comparison memes.

This was going on while my kid was alternating between eating crackers and throwing them at the dog. That was much less of a shitshow than the discourse I saw on Facebook.

And you wanna know what upset me? That I very clearly wasn’t an attorney. That I wasn’t doing more to fix things that are out of my control. (Our country is basically a fascist oligarchy at this point. I can’t undo that by myself, much as I wish I could.)

And then, I got angry that I’m not doing enough to fix things that are in my control. My house is too messy, and I was not ok with that… or the fact that I have no one that I can call to help me with the baby when this shit happens. Or that my husband works so far from home that even if he were able to leave work at the drop of a hat, it would be at least an hour before he’s here.

Essentially, yesterday, I realized that the world is on fire, and I am walking a tight-rope without a safety net. And I got very angry with myself for that… but anger doesn’t help anything.

I deserve to be able to call someone to be with me and Henry when I am having complex seizures.  And if that means that I need to interview strangers and hire a damn babysitter, even if Adam doesn’t think anyone can handle my seizures but him, that’s what I’m going to have to do. Henry and I deserve at least some measure of security.

Grateful.

Of course, all this emotional upset is pointless. Yesterday, we were safe. Henry spent a little more time in the pack and play than he would have liked, but he had toys and TV, and he enjoyed a lot of roughhousing with Daddy when he got home. I listened to my postictal playlist and “came back” pretty quickly — in less than a half hour, which is pretty great. I didn’t have any more complex seizures the rest of the day. Calling someone to come over would have been completely pointless.

So, who the fuck knows what the right thing is to do? I’m just grateful this doesn’t happen all the time.  Heck, last week, I was doing so well that I was able to take Henry to Gymboree every day. This week… not so much. But that’s life. You just gotta roll with it.

If you’re feeling well today, I strongly urge you to find something you can do, using your body and your good health, that will make you feel proud of yourself. Be active, and enjoy it. Exercise. Clean. Volunteer. Have awesome sex. Eat spicy foods. Go to a dance club filled with strobe lights. Watch a visually-intense movie at a theater. Drive wherever the wind takes you. Swim in the deep end. Nobody knows how long their good health will hold out, and those of us who deal with the crazy ups and downs of having multiple chronic illnesses hate to see anybody not enjoying that gift.

Carpe the shit out of this diem, people. It only happens once.

yolopug

News of the Rae

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

Today, I was thinking about how much I miss actively participating on LiveJournal. What I really have been missing is reading about what’s actually going on in my friends’ lives (as opposed to looking at memes about politics, sarcasm, and incorrect grammar), and writing about what’s going on in mine.  Twitter and FB are absolute shit for emotionally meaningful communication, and the only way for me to remedy things is to do some writing myself and to reach out to friends on the phone or Skype.

Medical Insurance Is A Lot Of Work

This week has been fucking crazy. I’ve gotten calls from almost every medical care provider I’ve worked with in the last 3 years because Humana was given incorrect information by BCBS of MN with regard to my coverage, and they sent out letters to those providers requesting a refund of the money they paid for my medical care.  You can just imagine how many providers I’ve seen in 3 years with my health being the way it is. Needless to say, a tiny mistake turned into a ridiculous clusterfuck (and one hellacious panic attack) for me.

See, BCBS does identification numbers weird.  Our family has 1 identification number and 3 member numbers, one for each of us. When CMS (Centers for Medicare & Medicaid Services) and Humana asked BCBS how long I’d had coverage, they only provided the identification number (because, apparently, all the other insurance companies have unique identification numbers for each person), without knowing that there were 3 members under that number. This lead to a simple, but unfortunately large, misunderstanding, since Adam’s had BCBS since 2011. It also lead to about 30 minutes of actual talking and 4 hours of sitting on hold to clear this shit up.

insurance

So accurate that it hurts.

In the end, it all boiled down to BCBS needing to fax a letter to both Humana and CMS letting them know that my coverage only started in January of this year. I just had to call back and forth between the different organizations and talk to different CSRs, explaining the situation over and over again. (For the record – customer service at BCBS is much faster to get a hold of and to work with than that at Humana.)

But I learned important things!  Like that every insurance company has a department devoted to the coordination of benefits, and that if you are on Medicare or Medicaid and you purchase private insurance or change providers, you absolutely must call CMS (at 1-855-798-2627) and also let their coordination of benefits department know, so your billing doesn’t get all jacked up.

I also learned that if you have Medicare (or Medicaid), and you choose to purchase another policy from a private insurance company, then the private insurance will always be your primary insurance, and Medicare (or Medicaid, or whatever other state-based insurance) will be your secondary.

Pharmaceutical-Grade Supplements Are Totally Worth It (For Me).

Also filed under “crazy” this week (but in the crazy GOOD category), I weighed myself after 2 weeks on the diet and supplement regimen prescribed to me by the endocrinologist I saw at BodyLogicMD.  I lost 7 pounds!  That’s a tenth of how much I want to lose, and it happened without any frustration.

This may not seem like the biggest deal in the world to anybody but me, but I seriously have been trying to lose weight for years with no success. I went paleo for months at a time. I weightlifted. I tried South Beach. I tried doubling my cardio. I tried calorie restriction, eating 1000 calories a day or less for a couple of weeks.  I  GOT PREGNANT AND HAD A BABY, and still had no change. (I seriously gained a total of 18 pounds with the pregnancy and lost 10 of it when Henry came out, and went right back to the same weight I had started at within a week.)

But now, I have movement on the scale, and all I’ve been doing is taking the supplements (prescribed based on deficiencies that showed up in my bloodwork), eating small meals every 3 hours (just like during pregnancy), drinking at least 64 oz of water a day, and not eating bread or pasta. I’ve been eating rice. I’ve been eating potatoes. I haven’t been working out. And the weight just  disappeared.

Another bonus: I have a ton of energy that I haven’t had in years. It’s amazing to me. I didn’t even expect that it would affect my fatigue… but it has.  There have been days where I didn’t even feel like I have MS. I mean, I went 2 whole weeks without an energy drink, or even 2 cups of coffee.  I don’t think that’s happened in the last 10 years.

But What About BioIdentical Hormones?

The doc at BodyLogicMD also prescribed me some bioidentical hormones to help with MS and seizures.

Based on the studies on estriol that have come out of UCLA, she put me on an estriol cream. It looks like it should be as effective at staving off relapses as Copaxone, at least for the first year.  I start it tomorrow.  I’m hopeful that it will be just as good as a DMD.

I’ve been very lucky not to have any progression since coming off Gilenya in February of 2014 to conceive Henry.  Dr. Javed wants me back on something if we’re not actively trying to conceive, but I have yet to try a disease-modifying drug for MS that isn’t somehow worse than the disease itself — so I’m keen to give Estriol a try, since the second and third trimesters of pregnancy were very much like a vacation from MS.

I’ll be starting a daily progesterone pill on Day 12 of this cycle to help combat catamenial  (read: caused by hormonal fluctuations around menstruation) seizures. When I was pregnant, I went for months at a time without a seizure. It is my most profound hope that I can return to a life where seizures are a “sometimes” thing and not an everyday occurrence.

I’ll be sure to let everyone know how these therapies affect me.

But for now, my honey just got home, and I wanna go give him kisses. ❤

love

All Hail Second Nap!

Posted in Just Life. by

Good Lord, have I been having a hard time getting to write recently!  So much has happened since my last entry. Fortunately, the little guy is down for his second nap, so allons y!

Happy Birthday, Hugabug!

13122875_10209419410351888_2676262525585641334_oA couple of weeks ago, my little guy turned 1. We celebrated on his actual birthday with the Majka family, and then the Shapiros came into town the next morning and stayed the weekend to celebrate Henry’s 1st and my Dad’s 59th birthday, too.

Our family gets SLAMMED at the end of April. Henry was born on the 29th, Uncle Stuart (my mom’s brother) was born on the 30th, and Aunt Caren (mom’s sister) and my dad were born May 1st.  So, we have 4 birthdays in 3 days. No big deal.

sillyhenry

I can’t love this little goober or his birthday tuxedo more.

Not for nothing, I think that we have an interesting birthday pattern happening. I grew up with my aunt and my dad having the same birthday (but different years). Henry gets to grow up with his mom and his Uncle Nick having the same birthday, all the way down to the year.  If he ends up marrying someone that shares a birthday with one of his future siblings, I will be consulting an astrology expert to find out the real meaning of it all. *lol*

The stats.  At 1 year, Henry was 24 pounds and 30 inches tall. He took his shots like a champ.

Obviously, being the daughter and granddaughter of doctors, I’m a fan of vaccinations — but I’m so glad we’re able to protect him against chicken pox. I had it so badly that I still remember how it felt, even though I was really, really young when it happened. (It was in my ears, people, and between my toes, and pretty much, well, everywhere.) I have a special place in my heart for Caladryl.

He is cruising. Adam and I are sure he will walk any day now. He’s just not doing it yet, for whatever reason. He can hold on to stuff and move quickly and easily. He climbs up and down from the couch. He is eating solids, like cereal puffs and baby cheesy poofs, and he’s learned how to drink the purees from the pouch instead of having me spoon-feed him. He still isn’t comfortable with using the spoon himself, but that will come with time.

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Smash cake tastes good!

And what else? His favorite TV shows right now are Sesame Street, Creative Galaxy, and Tumble Leaf — though he still brightens up when I put on Daniel Tiger, and he’s shown some interest in Peep and the Big Wide World.

He’s babbling like crazy. I expect he will be speaking in sentences within the next few months.  He has several words – Mama, Dada, Nah-Nah (Grandma), Buuuh (book), Bahbah (bottle), and Lahyew (love you) are the most common we hear.

He also has started fighting sleep. So, getting the kiddo to go down for naps has been an exercise in patience and mindfulness. Right now, for example, I can tell he’s awake. He’s smacking his headboard and turning on and off his mobile, but he’s not crying, so I’m letting him be. He’s got a couple of stuffies in his crib, so I’m sure he’s enjoying talking to them.

Health Crap

Speaking of exercises in patience and mindfulness… let’s talk about my health for a second.

Last time I wrote, I had to get an MRI of my liver. Well, I did that. And the gastroenterologist told me she was worried, based on the images, that I might have a tumor.  I did blood work for that, and thankfully, I don’t have one.  She does, however, want me to get another MRI in 3 months. I’m not really sure why, but I’ll be asking when I see her at the end of this month. I’m also not sure if I have a positive diagnosis of NAFLD, but I’m trying to lose weight anyway.

I also finally saw an endocrinologist.  Turns out that I’m terribly chromium deficient, which is causing me to become insulin resistant. My cortisol is also totally out of whack, and the combination of those 2 things means that losing weight isn’t something that my body will agree to. It believes, very firmly, that I need to hold on to all my fat… you know, because winter’s coming.

So, I’m making some big lifestyle changes to change my body’s mind. I’m on a bunch of new pharmaceutical-grade supplements that are helping with energy (I have to take, like, this whole handful of them 3 times a day), and I’ve started a new diet (which is basically the same as The Primal Blueprint, but allows legumes) where I have to eat every 3 hours (or else I get dizzy). I also have to drink about 100 oz of water a day.

As for other hormones: I’m starting estriol in a cream form in a few days as a treatment for my MS (arguably better than any of the currently-available DMDs) and bio-identical progesterone pills to help control catamenial seizure activity instead of going back on Seasonale.

The goal is to get down to what’s considered “healthy” BMI before I get pregnant with baby #2. I am disciplined enough to do the diet and exercise, but I have to hope that my body will play along nicely enough to allow me to get the exercise done. It will be a slow road, since I can’t get my heart rate up too much or I’ll cause seizures.

Fortunately, I have really good support from my heath care providers and my family, and a membership to a 24 hr gym with a cold lap pool. It could be a heck of a lot worse.

Aaaand Henry’s starting to sound not so happy, so this has to be it for now. Hope you’re all doing well. ♥

 

*waves*

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

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.

12802977_10153932000039522_8111415572072856692_n

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.

Posted in Just Life., Multiple Sclerosis by
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

Living In The Moment

Posted in Just Life. by

One thing that having MS has really done well for me is to force me to live in the moment.  Prior to developing seizure disorder (thanks to MS), I was almost always focused on the future. I was in law school, working all the time towards a goal that I would not achieve. These days, my goals are much more short-term and achievable.

Yesterday, for example, I had a crazy to-do list — more stuff on it than I could possibly achieve in one day.  I live by by the motto, “Do what you can when you can,” so I got a lot done before the evening, when I had a bunch of seizures.

This morning, I’m fighting the urge to be upset with my past self.  I have a ton of dishes to do, including bottles for Henry.  If I don’t do them first, he won’t have anything clean to eat from.  But I remember yesterday. I remember walking to the village hall and the grocery store. I remember going to the chiropractor. And I remember going to sleep confused and post-ictal.

yesterdaySo, I didn’t get everything on my list done… but I did a lot, and practicing self-compassion means not ruining today by being a bully to my past self. Nothing helpful occurs by being mean to myself for things that are outside of my current control.

There are times when I credit my ability to live in the moment to learning and practicing meditation, but the truth of the matter is, when you have an uncontrollable seizure disorder, you learn both to prioritize your activities and to focus on what really matters — safety and caring for your (and your child’s) most basic needs. Everything else takes a back seat from time to time, and that’s ok.  You have to give yourself some mercy. Dishes will wait. Unfolded clothes will wait too.  And yes, even a shower or bath will wait too. Nobody died from being stinky for a day.

Today, my neck and back are crazy sore, but I’m going to do my best and do what I can.  That means getting out the blanket and toys for Henry to do some tummy time while I wash dishes. When he naps later, I’ll work on the seemingly never-ending comparison spreadsheet that will help me decide my Medicare advantage plan for next year and answer the question of whether or not we should add me to my husband’s insurance policy.  (I’ve got to learn how secondary insurance works!)  I honestly can’t imagine how folks who have more cognitive hardships than I do make these important decisions. They certainly don’t make it easy to figure out which plan is the best.

Time to go snuggle a baby, put on some Sesame Street, and do all the things. Hope you’re having a good day.

cookie-monster-wisdom

Maintaining a Happy Marriage with MS

Posted in Just Life., Multiple Sclerosis by

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. ❤

Sending a Letter Through Time

Posted in Just Life., Seizure Disorder by
Henry says, "What are you lookin at?"

Henry says, “What are you lookin at?”

It’s been a good day.  Challenging, but good.

It’s a Tuesday, which means that Adam’s at work, and this is only the second day that I’ve had to take care of Henry and myself without any help.

The morning started out rough.  Yesterday, we ran out of disposable diapers, so we started using cloth diapers from the stash that I’d put together before Henry’s birth. Fortunately, he’s now over 8 pounds, so they fit him. (If cloth diapers had the yellow-turns-blue-so-you-know-he-peed technology, that would rock my world.  Scientists, get on that, won’t you?)

Anyway – the change from velcro-like closures on the disposables to the snaps on a reuseable Best Bottom shell got the better of me this morning in a suuuuper annoying kind of way.  You know that scene in all the baby movies where one of the parents gets peed on, and the baby pees on everything around it too, in an impressive and comedic fashion where you think to yourself, “Wow, kid got a lot of height with that whiz!”  Well, that was how I started my day — but it’s not where I am now.

Somehow, today, I managed to keep the kid fed and mostly clean (He needs a bath, thanks to spit-up, but we’re waiting for Daddy for that one!), to eat breakfast and lunch (Ok, so breakfast was just a Fiber One Protein Bar and a few swigs of RC Cola, but it’s better than nothing!), pump 3.5 oz of breast milk, do 2 loads of laundry, and take the kiddo with me to the grocery store and pharmacy down the street.

I know to a regular SAHM, this is probably not such a big deal — but I’m not a regular SAHM. Today’s the first day that I’ve managed to find time to put clothes on instead of pajamas, and is the first day in 3 weeks that I haven’t had any seizures at all.  Even on a good day, prior to giving birth, I would have been proud of myself for this level of activity. Adding in diapers, bottles, and pumping for breast milk, and I feel like I need some sort of gold star on a chart somewhere… which I guess is what this blog entry really is. I’m proud of myself, my kid is napping, and I get the chance to tell the world how far I’ve come.

If I could send letters back in time, I’d write this today.

Dear early 2011 Rae (the one having so many seizures per day that she has to use a chair to shower, isn’t allowed to cook, is bankrupt and suicidal),

You know how you are worried that you have no good reason to live, and that you are nothing but a burden to your family and society? Well, in 4 years, you’re the woman walking to and from the local (non-chain) grocery store and Walgreens with a 6 week old baby that strangers can’t stop cooing over, to shop for fixings for dinner and baby supplies…and you haven’t had a single seizure today.

Thanks for not killing me! There is more to look forward to than you can allow yourself to imagine.

-2015 Rae

I doubt she’d believe it was real. I’m a cynic — always have been — and depression/suicide is a crafty demon that doesn’t let anything positive in… but if I could show up in a TARDIS and give her a pep talk, I sure as shit would do it.  I hope that sometime in the future, if I need a pep talk, I remember to look back here and see how far I’ve come, and remember that things are never really as bad as they seem.

Look what I had to look forward to!

Look what I had to look forward to!

That being said, it would be totally bitchin’ if 2019 Rae could send me a letter or show up and let me know that we’re gonna make it through this infant stage without me losing my mind or ending up in the hospital because of sleep deprivation and stress. *looks around, expectantly* Well, I guess that’s not happening, so I’m gonna have to just keep doing my best every day, and remember to do my future self as many favors as possible. 🙂

Speaking of — that means getting off my butt, putting a freshly-laundered mattress pad & sheet back on the pack n play, washing all the bottles that have collected around the apartment, putting up another load of laundry, and straightening up a little bit. Heck, I might even go for extra credit and spritz on a little bit of pretty stink.  Adam’s on his way home!