Category Archives: Seizure Disorder

Posts about Seizure Disorder

Proof of Life

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

I’m still here. Still at “safer at home.” Still covid-free as a nuclear family.

July brought a couple of really great changes for us. The most significant change is that Adam got a job! He’s working with SENS Research Foundation as their executive assistant. He’s supporting multiple executives, gets to work remotely, and is excited to be using his skills to support scientific research that focuses on life extension instead of just helping a company make profit. It’s been amazing to me how seamlessly his new job has fit in with our regular day-to-day life. It’s been such a blessing, and I’m so grateful for the serendipity that created this opportunity.

The other change is that Gabrielle has gotten her first vaccine dose! By now, we should have had a fully vaccinated family, but the clinic where she received her first dose is no longer operating, so earlier this week, I had to source a second Moderna dose for her. She’s supposed to go in on Monday at 10 a.m.

“HOORAY,” you might think. “FINALLY, THE MAJKA FAMILY CAN LEAVE THE HOUSE AND DO THINGS WITH PEOPLE!!!!” And before today, you and I would have been having a celebratory moment together. But today, a daycare worker in central Illinois popped positive for monkeypox, and I’m gonna nope right outta that one. We’ll stick to outdoor, masked hangs for the time being, thanks.

I have both hypogammaglobulinemia (a primary immune deficiency) and multiple sclerosis. I also gave birth in April of 2020. Because of this, I’ve been hyper-vigilant about covid safety for our family this whole pandemic. I’ve been reading studies as they’ve come out. I’ve been reading physicians challenge each other over FB and Twitter. I’ve been watching, astonished, as the Western world has allowed politicians who are more concerned with the economy than the wellness of the citizenry to shape public health policy.

Someone’s gotta say it. The world has lost its damn mind.

Our leaders have purposefully lied to the public, chased after herd immunity that is not possible, and the result has been and will continue to be mass death. The public not only seems perfectly alright with it, but to defend the practice because they don’t enjoy wearing masks and can’t cope with their idea of normal changing.

But seriously, covid-19 infection can cause every single one of my disabling conditions.

But people are pretending that the pandemic is over, despite numbers being high almost everywhere. They continue on with life as normal, acting like getting infected with covid-19 as often as every 3 weeks is not a big deal. I don’t get it. Is their health so taken for granted that they actually don’t care?

I’ve even had friends try to tell me that I should “stop living in fear” and just “get back to living life.” They clearly did not realize that this was already my life. I was staying home before it was trendy because I had to. I can’t drive anywhere, thanks to the seizures gifted to me by MS. I do not need a second helping of all of *wildly gestures* all this.

PEOPLE, YOU DO NOT WANT TO WALK THIS PATH.

Please, wear a N95 or P100 mask anytime you leave the house and will be around other people, and don’t take it off unless you are in a safe place. An indoor restaurant (like a school cafeteria), unless it has been equipped with Far UVC lights and HEPA air filters, is not a safe place.

If I’ve said it before, I’ll say it a thousand times: I would do literally anything to protect my children from having the same health outcomes as I have had. Shit, I wouldn’t wish these conditions on my worst enemy — and these outcomes are only a few of the ways that covid can affect you. “We have the tools” is such a lie. Physicians can’t even agree about whether or not long covid is real. (Spoiler: IT’S REAL.)

In fact, I have now reached out to 3 of the 5 doctors who are a part of my care team to ask about whether or not a prescription for Evusheld would be appropriate for me and whether or not I should go get my 2nd booster (5th shot) now or wait for the updated booster in October. So far, none of them can help, and they don’t even know anything about the treatment. Is this what protecting the most vulnerable looks like? Really?

Maybe we’ll get lucky, and the public will decide that monkeypox doesn’t sound like fun, so they’ll implement adequate protective measures for both pandemics… but recent lived experience seems to indicate the opposite is true.

In the meantime, I’ll be making life as fun as possible while we’re outliving public health policy based in eugenics. I remind myself, every day, when I get upset that the government has essentially thrown us to the wolves, that the most punk rock thing I can possibly do is loudly enjoy myself while persisting despite anyone’s efforts to bring me down.

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.

Opting out of psyops.

Posted in Just Life., Seizure Disorder by

So, longtime readers of this blog are well aware of the fact that I have seizures that occasionally culminate in postictal confusion where I believe it’s a different date when I wake up. I like to jokingly call it “time travel.”

Recently, I had a larger seizure (which is increasingly rare for me since making changes to my diet), and when I woke up I was certain it was 2003.

16 years is a huge difference when it comes to life, the news cycle, and, well, pretty much everything! It really freaked me out to know that I was married to a different man, had a 4-year-old child, and owned property in Chicago.

Back in 2003, Chicago was probably my least favorite American city because of some ridiculous shenanigans that occurred here in 1996/1997, when my then-best-friend moved here from Memphis. We made some terribad decisions together on New Year’s Eve. Anyhow — in 2019, Chicago might be my favorite American city — and not just because I live in the burbs. It has all the best things of Boston (accessible, inexpensive public transit), Los Angeles (arts!), and Nashville (low cost of living for a major city) without the detriments of each of those cities.

Anyway, I found myself compulsively scrolling Facebook after I came back from the confusion. I habitually check my timeline when I come back from postictal confusion to try to jog my memory and make sure that I am up to date. This time, I couldn’t look away.

Now, I understand that fight/flight/freeze is a real thing, with or without mental health issues — but I also recognize that I have both the opportunity and obligation to opt out of the info stream that is causing exacerbated problems! So, rather than continuing to be affected by psyops, I am taking a social media break.

The constant news cycle and prolific articles about what is happening in our country are genuinely terrifying. It was so bad that I was feeling an intense need to run to another country, with or without my family. And that’s a terrible, terrible idea.

It is really difficult to not be constantly checking my phone right now. The fear is real. The anger is real. But the idea that staring at the dumpster fire will help me feel more in control of the situation is, well, just false.

One of the things that I’m really concerned about is that I participate in a ton of communities on Facebook that are designed to help with accountability and support for chronic illness, weight loss, and mental health. I don’t want the people in my communities to think that I’m abandoning them, but I have to put my and my family’s safety and wellbeing first.

Fortunately, having a memory problem makes it a little bit easier to avoid social media. I was able to log out of all of my accounts on all of my devices, and I genuinely do not know my passwords to get into, well, anything. That road block is far more effective than the BlockSite app at stopping me from logging in despite my better judgment.

So, if you need me, or if you want to respond, please email or text or ping me here by replying.

Hope you’re all having a happy Friday. ❤

Ke(y)to Happiness?

Posted in Multiple Sclerosis, Paleo Diet, Science, Seizure Disorder by

The other day, I made a comparison chart for 7 diets that I had considered trying or had actually tried in an effort to improve my MS. It ended up getting featured on Modern Day MS, which is pretty cool.

dietcomparisonpt1

.dietcomparisonpt2

I am almost certain that the diet that I need to be on is the traditional ketogenic diet. It’s ostensibly the best diet for overcoming NAFLD (Non-Alcoholic Fatty Liver Disease). This graphic outlines 7 ways that being in ketosis can help you, and I need help with all seven things!  

benefits-of-ketosis-min

Unfortunately, despite my logical brain knowing that this is a good idea, the most of me is absolutely dreading this shift. I will miss the convenience of restaurant food and delivery very much. I will miss comfort foods. I will miss the quiet calm of not having to justify my nutritional choices to others or to myself. (Because, let’s be real, the constant chatter and fretting of Anxiety will happen no matter what, and it’ll do its damnedest to make me question myself every bite along the way.)

friendseatthat

I think one of the hardest things about changing my way of eating at the moment is the fact that I have a precocious three-year-old who survives primarily on Goldfish crackers, peanut butter Ritz Bits, chicken nuggets, French fries, and various fruits. Honestly, reading that, I feel Shame. (“Big S” shame. Toxic shit.) Of course, like anyone seriously considering this diet, I watched The Magic Pill on Netflix, and felt like a terrible parent.

My boy is 39 inches tall and nearly 40 lb. I don’t know that changing his diet is the right thing to do – but, I do know that I will absentmindedly snack on Chex Mix if I’m serving it to him. If I’m genuinely convinced by the science surrounding the ketogenic diet — about it being the optimal way for humans to eat — why would I continue to feed my child a diet that is likely to set him up for type 2 diabetes in the future?

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My little ham.

Why am I so filled with anxiety over justifying these nutritional choices even to myself? Do I just like sugar that much? And, why is it so damn hard for me to just be part of normal society? Isn’t it enough that I’ve got a majillion chronic illnesses? Do I need more social isolation? Do I really have to make my life even more difficult? 

And will it just make life more difficult, or will it actually work?

If it works, it could make things so much better for us. I want to be able to imagine a future free from complications of NAFLD, hypertension, high cholesterol, and depression and anxiety. I’m honestly a little giddy over the thought of raising my seizure threshold. If I actually believe the science regarding how my physical health should improve, then it’s absolutely worth it…

Unfortunately, I have doubts. And it’s reasonable that I have doubts! Scientists sometimes lie for money. I did everything I was told by my doctors regarding diet for most of my life, which meant eating lots of low-fat, high complex carb food, which has, in part, led to the health that I am currently experiencing.

I feel so hopeless and depressed.  Living in a post-fact society, I have no idea who is trustworthy.  I want to feel empowered and excited. I want to inspire you to come of a journey of health and rebirth with me, knowing that the outcome will be stellar and worth the emotional investment.

The truth, however, is that I’m having a really hard time even being motivated right now, and so I’m looking for as many credible studies as I can find. Like these… and these… and this. It’s easy to find pieces challenging it.

My therapist isn’t much help with my depression these days. She says I have all the tools in my tool box.  It’s all up to me.  Well, either it’s all up to me to take the best possible actions or it’s time to find a new therapist, which may also be one of those positive actions, depending on whether or not I’m able to continue to hold myself together. To be totally honest, the idea that I could have “beaten” my mental illnesses sort of cracks me up when I legit had to do EMDR butterfly hugs just this morning.  

Still, I know meditation and my actions are only part of the equation.  Major depression is a biological disease affected by MS and caused by brain inflammation. Oh, and btw, “[p]eople with depression who [experience] suicidal thoughts … exhibit significantly higher levels of TSPO, … indicating inflammation of the brain.” [source] I’ve only visited that thought pattern a few billion times. 

But, guys — guess what is decreased when you’re on a ketogenic diet? Brain inflammation. [source]

So, I will start this diet on Memorial Day whether I feel like it or not.

I am ready to feel better. I want to be happier and lighter-hearted and thinner and to live longer for my boy. I’m just not looking forward to the hard part.

I’m glad to be reading Barbara Applebaum’s book Be Your Own Superhero. It’s really helping me with motivation right now.

—

Also in a positive direction, I have logged out of Facebook in Chrome on my telephone, and I will not log back in. So, now I not only do not have the app, but I have to actively log in on Chrome or open up my laptop if I want to immerse myself in other people’s opinions, problems, and other random bullshit.

I decided I’m tired of putting myself in harm’s way, and with the knowledge that real life is triggering my PTSD on its own, (Thanks, Dominionists!) I don’t need to poke the bear. I want to use my time better.

So, I’m using that time to craft a month-long meal plan with recipes. I’ll have a plan for ~1400 calories/day for me and one for whatever Adam’s ideal calorie count happens to be. I’m guessing ~1800.

Let me know if you want to do it with us. 

Challenges.

Posted in Paleo Diet, Seizure Disorder by

Earlier this week, a new friend challenged me, since I hadn’t yet really gotten into the Wahls Protocol, to go ahead and try AIP first for 90 days.

I said that I could do anything for 90 days in the interest of not having seizures… but to be honest, I’m not sure that I can. I mean, I can’t even get myself to eat 9 cups of veggies a day… and that’s on days when I can make good food decisions for myself.

Physical

Yesterday and today have been difficult for me, health-wise.  Bunches of seizures. (Like, so many I lost count.) Many ended in post-ictal confusion “time travel.”  Lots  of gastric pain. I even fasted for 24 hours because of the pain… It even hurt to drink water.

But you know what made the pain stop enough for me to be able to eat and return to being a mostly-productive member of this family today?  Cannabis. To be more thorough, it was a high CBD edible. Specifically, 2.5 mg of CBD and 1.25 of THC — or an 8th of a piece of 1 Strawberry Peach sour gummy.

Or, if you’re ignoring the medicine in it, and are only thinking about diet… an 8th of a piece of gummy candy that definitely contains sugar and probably contains artificial flavors and coloring.  *sigh* Heck, there’s even a sign at the dispensary making sure everyone’s aware that edibles are not being created in a sterile environment and that anyone with allergies is advised to forgo them.

So, I find myself wondering if that small amount of verboten food, (truly, about a cubic centimeter of candy that may have come into contact with gluten, dairy, etc.) taken almost daily, would make the rest of the diet, well, pointless.

If it were for weight loss alone, I would know that such a small indulgence wouldn’t matter in the long-term — but when the dietary objective is to decrease inflammation and improve symptoms, I’m not so sure.  Then there’s always the questions — “Is the CBD more anti-inflammatory than the sugar is inflammatory? And “How long do the effects last?  Is sugar inflammatory for a half hour and CBD anti-inflammatory for 4 hours?”  It’s really hard to science that shit when you have degrees in music and law and know diddly squat about chemistry.

And then there’s the whole “family planning” thing. Obviously, I’m not going to start trying to conceive while I’m still waiting for results from the hematologist and CT scan, but if I’m all clear in those areas, it’s time to make another Majka… and the last time I gave up paleo and cannabis was when I was in my first trimester with Henry, and the doctor stressed the importance of eating a “balanced” diet, including grains and dairy, and he dropped a whole bunch of pamphlets on me.

I honestly don’t know what the fuck to do.  It’s not the optimal time to make any decision at all, when I’m hurting, anyway… certainly not the time to thoughtfully consider something that will change the way I deal with life a minimum of 3 times per day.

Mental/Emotional

For anyone who is curious about the psychological gems that I mined for in the dungeon of yesterday’s seizures, I got to spend a surprisingly long amount of time yesterday (almost 15 minutes!) as my 2008 self.

She was absolutely furious with my lack of career, lack of discipline, and 50 lb weight gain. She cannot believe that I’m not only living in IL of all places (There’s fucking snow here! UGH.), but that I refuse to take the IL bar. (She accused me of being lazy! It’s only a 2 day test!)

2008 Rae believed I gave up on life, and that I am now pathetic and worthless and deserving of contempt. But, hey, at least my kid’s cute, and Adam’s still hot.

She was waaayyyyy more of an uncompromising cunt to me than I realized while I was going through the process of being her. She was proud of herself for standing up immediately and continuing to study for the bar exam after she had drop seizures. She thought it was proof that she was tough and “has what it takes.”

But then again, that was before almost a decade of therapy. Before self-compassion was even a term that I’d heard. Before EMDR. Before marrying Adam. Before becoming a mother. Before redefining what “success” means to me.

My favorite incorrect insult from her was when she accused me of being a boring, suburban housewife with nothing to add to society.  If I ever needed something else to rage against, it’s that.

God forbid I be boring.

*jazz hands*

Wahls Adventure: Prologue

Posted in Multiple Sclerosis, Paleo Diet, Seizure Disorder by

It’s been a tough weekend so far.

Yesterday, out of nowhere, I started feeling like there was a ton of heat coming off my solar plexus, and then it shot through my body like I was on fire all over. I could barely breathe (like, I was gasping for air), and in that moment, according to Adam (because I legit do not remember), I had something akin to a grand-mal seizure in the car, hitting the dash and tearing at my clothes before passing out.

I don’t remember getting home. In fact, I don’t remember much of yesterday, aside from being really frustrated when I opened my vape cartridges that Adam so thoughtfully picked up from the dispensary for me, and they were both unusable. So, tomorrow, we have to take them back and get them exchanged.

I remember that we were on the way to the Orland Park indoor neighborhood garage sale, and I’m still pissed that my body made me miss that.  Next year, I guess!

Anyway, the panic attacks and seizures didn’t stop in the morning, or even after I slept. We’ve started keeping a log of my blood pressure, which is kind of all over the place, considering that I am on a high dose of Labetalol.  Today, I keep feeling like Blanka… electric all over, and like even soft touches are too much for me.

blanka

This motherfucker gets me.

Pictured: Blanka from Street Fighter during his “Giant Bomb” attack – electricity coming off of every part of his body

I think I know what may have precipitated the attack, but it’s not the only variable in play.  The day before yesterday, I was sick with stomach flu (fever and all), and I drank 64 oz of Gatorade, followed by a ton of Halloween candy.  The intensity of pain and large number of seizures that occurred within 24 hours made the correlation of sugar consumption to discomfort too obvious to ignore anymore.

So, I finally decided that reading other people’s blogs while hemming and hawing about whether or not I’m willing to go paleo again was insufficient, and I purchased my copy of The Wahls Protocol.

The Wahls Protocol is very different than any other diet I’ve tried before because it has 3 steps to it — basically 3 discrete diets that increase in difficulty to adherence.

Step One: The Wahls Diet (or “What Rachael is going to be starting this week.”)

wahls

  • No gluten, eggs, dairy (except for ghee), refined oils, or processed foods.
  • Sugar is limited to that which occurs naturally.
  • 6-9 cups of vegetables daily (3 cups of leafy greens, 3 cups of sulfur-rich vegetables (cabbage, broccoli, cauliflower, etc) and 3 cups of deeply colored vegetables and fruits, such as berries, carrots, winter squash, beets, etc).

Everything should ideally be organic, grass-fed or wild-caught foods, if your budget allows. Mine does not.

This is very close to the paleo diet, but it allows for non-glutenous grains like corn, oatmeal, and rice.  Y’all know I can hang with the traditional paleo diet, but that’s “step 2,” and considering the point of the diet is to maximize the nutritional content of what you’re eating so that you can power up your mitochondria (and hence your whole body), as long as I’m getting the veggies in, while limiting sugar, I think I’m making positive headway.

Honestly, I’ve been through all the tests, and I don’t have Celiac Disease or any allergic reaction to wheat, so the only reason that I’m avoiding it is because it helps force me to find a way to put a vegetable in place of whatever bread product my brain immediately jumps to. So, fortunately, I don’t need to be afraid of cross-contamination like many folks do.

In the past, I think the biggest barrier to sustained compliance on the paleo diet for me has been the All-Or-Nothing mindset. To help ensure that I actually get this done, the only thing I’m going all-or-nothing for is eating the cups of veggies.

I’m trying really hard to shift my mindset from “This is gonna suck.” to “This will help me feel better and is totally worth it.” So far, it sounds like, “This is gonna suck until it helps me feel better.” 🙂

Ah, honesty.  You’re almost optimism.

  • If I eat inflammatory foods, I’m literally feeding and empowering my disease.
  • If I eat the required vegetables and avoid foods that are known to cause inflammation, I’m feeding and empowering my mind and body.

When I think about it that way, choosing any other course of action seems beyond stupid.

Thus, once I’m done with this entry, I’ll be doing some meal planning… because I’m certain I won’t get Henry on board for green smoothie breakfasts and salads at lunch, but I’m pretty sure I can figure out meals for him that use at least some of the ingredients. (I mean, really, that’s definitely part of what makes me shy away from the level 3 ketogenic diet. I’m not sure how I’d do without bananas in my life.)

Adam is totally on board to power up his mitochondria with me.  I really lucked out in the supportive husband department. But he’s also been watching Henry for several hours now while I read and then wrote this. So, I should probably quit blogging and go spend time with them before making the grocery list.

Hope you’re having a good weekend!

 

Have you tried the Wahls Diet?  Do you have any favorite recipes that happen to contain a fuckton of veggies?  Let me know in the comments or email me with suggestions!

Well, duh.

Posted in Just Life., Seizure Disorder by

You know, there are days when I realize that for however smart I was in grade school, that may well be how completely clueless I am as an adult about common sense things.

smart-vs-dumb

Gorgeous, either way, though, right?

See, I’ve been living in Orland Hills, IL for a little over a year now.  The town is so small that in order to use public transportation, you actually have to call a phone number more than 24 hours in advance and set up your ride.  It’s like paratransit, but for everybody.

When we moved here, I walked over to the town hall to get all of our paperwork in order, and I was told by some of the ladies who work there that I couldn’t bring my baby on the bus because they don’t allow car seats.  Thus began my year of walking everywhere and having absolutely crushing stir-craziness in the winter, wondering how I would make it until my son turned 8.

Well, today, I had enough of it.  It’s gorgeous outside (but -5 degrees wind chill), and despite having time travel seizures yesterday, I decided I was tired of feeling like a middle schooler who was impatiently waiting for one of her friends to get a drivers license. I decided to ask the hivemind — my friends on FB and the folks in one of the local parenting groups on there.

And do you know what they suggested? A taxi service.

benny

I’m not sure why it didn’t occur to me earlier, and I feel totally dumb for not thinking of it. It’s so simple and straightforward that it makes my head hurt.

For some reason, I thought that since we’re living in the suburbs, we wouldn’t have access to taxis out here… but we do! I even thought, “Hey! Uber might work!” but riding in an Uber with a baby and his car seat only works if the Uber driver is cool with it — and most of them aren’t. (Who can blame them? If my baby pukes, Uber’s not gonna clean it up for them, and if we are in an accident, the liability for them is too great.)

So, one of the ladies in the parenting group suggested a specific driver who works with her elderly mom, and I’m going to be giving him a call tomorrow.

I’m tired of feeling like less than an adult, simply because I can’t get where I want to go when I want to go. Henry deserves to go to the library, regularly. He deserves to go on playdates. He deserves a life outside of this house, and a mommy who has more self-esteem than I do right now.

Cabbing it might seem kinda costly, but I’m going to do everything I can to remind myself, when I’m feeling too cheap to give us freedom, that if I had a car, I’d be paying more for gas, maintenance, licensing, and insurance. Not to mention how much we’ll save on psychological therapy in the coming years for me and Henry. (No agoraphobia allowed!)

So, I’m now looking very forward to going to pilates or yoga classes during the day at our gym like I’ve wanted to for so long. I’m going to make friends here and be a functional member of this community. I’m going to stop using my inability to drive as a reason to feel sorry for myself. I’m taking back at least some of the freedom I’ve unconsciously given to seizure disorder.

On a completely different note, I was approached by an employee of Earnest a few weeks ago who asked me to write an entry on holiday budgeting. Over the course of our emails it appeared that they wanted me to suggest to my readers that they refinance their student loans. They didn’t offer me any compensation to promote them, so my link above exists out of nothing more than goodwill towards someone who may have read one of my entries, but who definitely has a tough job if they’re trying to get sporadic writers like me to pimp their product.

Anyway, I have a ton of tips that I would be happy to share about how I personally save money, but I also have a massive amount of respect for my small and dedicated group of readers. I don’t believe that y’all care one iota about reading about that sort of thing here.  If I’m wrong, let me know, and I’ll happily write it up for you.

Hope everyone’s feeling well, and that 2017 isn’t half the shitshow that the Great Dumpster Fire of 2016 was.

2016dumpsterfire

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

*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!