Category Archives: Multiple Sclerosis

Posts about MS

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.

I have no idea what I am doing.

Posted in Just Life., Multiple Sclerosis, Spirituality by

Week 41. That’s where I am with my Friday writers’ group. Today, we’re supposed to craft an essay around our favorite childhood memories. I have, instead, opted to actually post in this blog — something I haven’t felt called to do in quite some time. My inner child was all about some good stories, so I’m certain she’d approve of my choice to pick up my digital pen in a place where someone else might actually get the chance to read the work.

Today is October 8, 2021. There’s nothing particularly special about today. It’s beautiful outside. 67 and partly sunny. Things are joyfully normal at the moment. Henry and Gabrielle are upstairs with Adam, and I’m in the basement on a Zoom call with some of the best people I know, writing together, separately.

I’m 2 days out from having taken a 6-day medrol dose pack for what appears to be a near-yearly beginning-of-October MS relapse. This is knowledge I came to thanks to FB memories. Reviewing my memories earlier this week showed me that I had a MS relapse 6 out of the last 10 years around this time. So, it looks like better than 50/50 odds that, in the future, I’m going to be feeling like shit on my anniversary. Considering that I had a flu-like virus and seizures at my wedding and still sang and danced and had the best day of my life, it only figures that our anniversary would remind me that having a good time has more to do with attitude than anything.

At the moment, my body feels normal. I’m no longer dealing with crushing fatigue or numbness on parts of my left side (back of the arm and chest most pronounced, which were the first symptoms that caused me to go to urgent care and end up with a diagnosis in 2007), and I haven’t noticed any seizure activity yet today.

Earlier this week, was, if I’m going to be honest, a total shitshow of pain (physical and emotional), memory issues, PTSD flashbacks, nightmares, and personal growth. I’m so grateful for corticosteroids, EMDR home practice techniques, and music.

And I’m grateful for TikTok, though I’m terribly slow to figure it out.

Recently, I’ve been watching it in the mornings and at night while medicating. (I smoke MMJ these days to help with seizures, MS pain and muscle spasms, and PTSD/anxiety/depression. It helps more than other medications have, but I’m strongly considering starting to buy RSO and making coconut oil capsules because I want to feel more in control of the dosage of my medication and to not be causing my voice damage. I’d buy the edibles at the dispensary that are already ready, but they all contain sugar. WTF is up with that? Like, if you’re making medicine for people with seizures, maybe, like, consider their potential diets. Just a thought.)

Anyway, TikTok has been an amazing resource for meditation. So many people make singing bowl videos or affirmation videos. I haven’t bought into the “Law of Attraction” (and I never will, because I understand the victim blaming part of that mentality, and I am not buying into a spiritual way to berate myself for existing in a way other than I would prefer), but affirmations are a science-backed way to help yourself create new neural pathways when you’re choosing to improve your self-esteem and change how you talk to yourself.

Sure, I don’t believe that “I am healthy, I am wealthy, I’m the shit, I am that bitch” –YET, but one day, I’ll get there. One TikTok video suggested putting “What If” before affirmations that feel like bullshit to help you consider the possibilities.

What if I am a bad bitch? What if I am, in fact, the baddest?

There are also a double fuckton of people just busking on there. I’m not going to pretend otherwise: it makes me want to do the same thing. I mean, could I go live, practice an instrument, and just let people send me money? Can life be that easy? IS THAT ALLOWED??? More importantly, can I allow myself to do so? I haven’t busked since Berklee.

One of the biggest downsides of being diagnosed with CVID has been a fear of crowds. I mean, it’s hard to want to perform in a venue (even not during a global pandemic), for an open mic night when you’re immune compromised. But where’s my excuse when I can perform from home whenever I want?

Of course, it also helps to have a seemingly endless parade of videos in my FYP (For You Page) encouraging me to make and post content. Need a pep talk? TikTok has your back. I have saved some of my favorites. I know they don’t know me! Do I care? NO! DIVINE ENERGY IS TELLING ME GOOD THINGS, AND I ACCEPT THE MESSAGE.

Do I love and interact with every single singer-songwriter, harmony stacker, poet, artist, or D&D nerd that comes across my feed? YOU BET YOUR ASS I DO.

Do I make ridiculous 1-shot videos with a goofy beauty filter to help encourage other people too? Um, yes. I very much do. In fact, I am low-key cosplaying as a bejeweled goddess of inspiration because it makes me laugh. Who needs a book and dice to play make believe? The whimsy is strong in me when I see the filter. It makes me feel playful, so I let myself play. And allowing for play? That’s sort of new to me – and a sure sign that I am conquering depression in the moment.

Yesterday, I read some of my first entries from this blog, and they made me laugh and have bittersweet feelings. I have grown and changed so much. I’ve been deeply committed to being who I am and doing what I can with life, despite my limitations, and that hasn’t changed.

In fact, it’s really cool to be able to look back over it. I wish I could send a love-bomb back in time to the Rae who was coming off of Cymbalta and Abilify at this time in 2012. That shit was super hard. It caused nearly constant suicidal ideation — but I’ve learned to treat the persistent, unwanted thought like sneezes most times. It doesn’t feel like an emergency. Probably because of the number of times my inner response to it has been, “Thanks for your suggestion. Our operator is currently busy. Death is inevitable. We thank you for your patience.”

I could never have envisioned the life I live today back then. Sure, I’ve had a lot of setbacks, but ultimately, I’ve been so successful. It’s impossible to look into my children’s eyes and feel any other way.

Gabrielle blowing raspberries.
Awwww, raspberries!!!

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.

Dear Universe, I’m listening…

Posted in Just Life., Multiple Sclerosis by

Accosted at Costco

Last night, after a day of feeling terribad, I managed to drag myself out of the house and go to Costco with Adam and Henry to pick up some needed supplies and eat cheap pizza.

For the first time in years, an older, overweight, white gentleman looked at me with anger in his eyes, and said, as we were walking to the store, “WOW! Which one of you is handicapped?”

I didn’t miss a beat. Rather than being rude, I locked eyes with him and said, “Me!  Epilepsy and multiple sclerosis. Thanks!” And under my breath, I muttered, “You fuckin’ asshole.” Part of me wanted to answer, “None of your fuckin’ business, douchebag!” but honesty meant that he had the opportunity to understand both that he’s wrong for asking, and that I am not ashamed of my disability.

I spent at least the next 30 minutes trying to figure out why I was so furious, and why I couldn’t calm down. Was it because someone thought that they should be policing my body? Was it because I didn’t look disabled enough for someone to show basic compassion? Nah. I’m actually proud that I’ve done enough exercise to be able to walk well. But I finally figured it out…

I was pissed because every time a stranger calls me out over my parking space, what they’re really doing is publicly impugning my honor and my husband’s honor, since he’s the one who drives.  They’re suggesting, loudly, that we are liars — that I’m not really disabled, and that I don’t deserve the space.  And dear LORD, I wish that were the case.

Yesterday, I was actually feeling so badly that I almost didn’t go to the store. I hadn’t bathed in a couple of days (I don’t shower when I’m feeling shitty for fear of falling, and I need Adam at home with me in case of that.), so I put on extra deodorant and a baseball hat to cover my greasy hair. I was wearing pajama leggings and one of Adam’s old t-shirts with no bra — because yesterday, bras hurt too much to wear.  My arms were stinging, my legs were heavy, and I’d been battling stomach issues since I woke up.  But, apparently, I didn’t look disabled. I just looked like a slob. (Ha! Both can be true.) I dared to go to the store anyway, because I know how important it is to get up and move, even if it’s just a little bit of walking… and I had to get the fuck out of my house. Stir-crazy is no good. I don’t regret it.

looksick

Atonement

Yesterday also happened to be Yom Kippur — the holiest holy day of the year for Jewish people. So, technically, I shouldn’t have been going to the store at sundown anyway… but my faith is anything but traditional.

Before getting in the car, I told Adam that I felt like the self-flagellation practice of the holiday didn’t make a lot of sense for me anyway. I could tell you (or G-d), without blinking an eye, everything that I think is wrong with me, and apologize for it any day of the week — but I have a lot harder time finding the things about me that I should celebrate and thank the Almighty for. If I need to atone for anything, my strong suspicion is that I need to atone for not recognizing or using my gifts to their utmost.

The whole point of Rosh Hashanah and Yom Kippur, and the Days of Awe in between, at least as far as I have groked, is to take stock of where you are in life, get right with yourself and everyone else, and start a new lap around the sun with a better attitude about life and renewed determination to be the best version of “you” you can be.

So, I didn’t just take the stranger’s provocation just at face value. I also felt a nudge from the Universe, reminding me to write here.

I actually started this blog after the first time someone accosted me for parking in an handicapped space. That was back when I could still drive.  I like to joke that I’m just in it for the parking because it’s a better attitude to have towards my disability than to sit, mired in self-pity.  Gratitude wins every time. So, here’s my prayer of thanks, patterned off of memories of temple services long-since attended.

If I must be disabled by seizure disorder and MS,

  • At least it makes parking easier.
  • At least it means I get SSDI and guaranteed medical insurance.
  • At least it means that I get to spend time with my son instead of having to send him to daycare while my labor generates wealth for others.
  • At least it means that I get the chance to individually tutor my son so that he can learn at his own pace.
  • At least it means that I get the chance to explore a side of femininity I would otherwise have entirely ignored due to internalized misogyny, and attempt to be a good housewife.
  • At least it gives me the time to check in on the people I love and offer them support.
  • At least it gives me the opportunity to participate in online support communities and help strangers who are suffering, on a daily basis.
  • At least it consistently helps me grow with regard to empathy and determination.
  • At least it challenges me to find ways of being that honor my past and build possibility for the future.
  • At least it helps the people who care about me grow in their understanding of our shared humanity.
  • At least it gives me the chance to write and be creative, and in doing so, to honor this experience and connect with others.

yomkippur

There’s Never Been A Better Time To Have MS

So, there’s never a great time to have MS, but really, really, it’s been as great a week to have multiple sclerosis as there can be.  There’s been a ton of research that’s come out with regard to the cause(s) and mechanisms by which the disease actually works.  This gives me a ton of hope for the future.

Here are some important news stories that have dropped in the last week.

ms-nerve-cells

Starting Fresh

And in the spirit of being the best “me” that I can be, I’ve decided to massively decrease the amount of support that I give to Facebook by providing content. The news came out in the last week that they’ve decided to allow advertisers to lie, and that content that would get users banned will not be considered ban-worthy if it’s coming from politicians.  I think that’s outright foul. FB isn’t just facilitating defamation, they’re supporting it.

So, I’m taking my community-curating, constantly-posting-content self to MeWe.  I’d love to see you there.

facebook-mewe

And one last thing…

Apparently, it’s also World Mental Health Day.  I still suffer from depression, anxiety, and PTSD. I am have worked in therapy for years to feel better, and I am not ashamed. If you are struggling, please reach out. There are good people out there who want to help you. I’m one of them.

I’m alright.

Posted in Just Life., Keto Diet, Multiple Sclerosis by

As of today, it’s been 2 weeks since I last logged in to either Facebook or Twitter. I got my first, “Are you okay? People are worried about you.” text the day before yesterday.

I was both surprised (a) that anybody was worried (because Depression would have me believe that nobody cares) and (b) that it took 12 days for anybody to miss me enough to check in. (Though, to be fair, I’ve been checking in with a lot of people and making the first move because I recognize my responsibility to maintain relationships that are important to me.)

I had hoped that by posting here about my decision to step away from social media that it would have helped folks to not worry.  And then I found out that WordPress no longer publishes blog updates to personal timelines.  It only works if it’s attached to a Page and not to a personal account.  Adam thinks I should just create a Page for this blog. He’s probably right.

But, if I’m going to put in the work to do that, may as well put in the work to revamp the site and market it to increase readership… to start daily posting again, and hope that by leaving footprints on the path that I walk, that it does anything helpful and good for anyone else.

Thinking about it makes it feel like a lot more work than it is… It also would require me to log in to FB and Twitter and weed my digital garden to curate a better newsfeed experience. Right now, I’m not sure whether or not I have the time or energy for all that. I’ve just started to not automatically reach for my phone every few seconds.

Banality

To be really frank, I’ve dived deep into housewifery and stay-at-home mom-ness in the last few weeks. I’ve been focused on my family’s health and giving Henry the educational and emotional support he needs to grow up smart, kind, strong, and self-assured.

Sure, my house always seems to me to be in dire need of a maid, no matter how often I pick up (an act that feels constant and on-going), but life is happening here in full force. Loads of creativity through messy art projects and loud, often-dissonant, impromptu music sessions. Lots of science and math through baking and cooking and LEGO and video games.

As someone who used to live her life almost strictly for the stories (Cheers to you for being entertaining, 2004-2006 Past Rae), I find myself having a tough time feeling like I have much to gab about on my public, digital diary.

There’s not much excitement to be found in the daily, constant cycle of dishes and laundry, in religiously coupon-ing with multiple apps [Ibotta, Jewel’s app, Fetch Rewards (Use my referral code, 73962, during signup and you’ll get 2,000 Fetch Points just for starting.), & Coupons.com], meal planning around the weekly promotions at the 3 different grocery stores in walking distance to my house, and, oh yeah, managing my health.

The one remotely interesting thing that I’m doing right now is volunteering with Detention Lifeline, and writing legal briefs is only interesting to me because of the kind of nerd that I am. Truthfully, I’m just grateful that my legal knowledge might help, well, anyone at all.

Back on the Keto Bandwagon

One of the biggest changes of the last few months for me was stopping the keto diet and returning to the standard American diet (SAD for short) while trying to conceive because my high-risk OB wanted me to just do exactly what we did to end up with Henry. (The idea being that since Henry’s pregnancy was uncomplicated and he’s healthier than any of us, I had it right the last time around.)

Well, my 38 year old body isn’t my 33 year old body, and pain and seizures from unnecessary inflammation caused by diet does not make for optimal sexytime.  There’s an order of operations here that just cannot be ignored.

So, I gave the SAD 3 months. I gained 10 pounds and started genuinely struggling with MS, seizures, and depression again. Come to think of it, if it weren’t for the switch in diet, I probably wouldn’t have had the time-travel seizure that created the desire to quit social media. So, yeah. That’s enough of that nonsense.

Do I think I’m going to keep keto throughout my pregnancy?  Definitely not. I want to make sure a developing child has everything it could possibly need while inside me. And morning sickness absolutely begs for carbs. But fertility specialists recommend the ketogenic diet for both men and women who are trying to conceive — and that’s where we’re at. Plus, it helps with MS – both with managing symptoms and with slowing progression. I’m already supplementing with a prenatal vitamin with extra DHA and also take additional folate, so hopefully, everything will work out the way it needs to.

After having a spontaneous miscarriage in August of 2017 and having to end a pregnancy in late November of 2018 due to genetic abnormality, I’m really, really hoping that the 3rd time is the charm. I’ll do whatever needs to be done to help Baby Majka #2 to join our family. We all already feel their absence, and it sucks.

But it is nice to be able to sleep through the night, so I’m not taking that for granted for even a moment.

In that vein of thought, I’m going to get to work on a brief for a guy who is detained in one of our our many American concentration camps, so that he will eventually get to have some good sleep too.

In the Interest of Honesty

Posted in Just Life., Keto Diet, Multiple Sclerosis by

It’s been a very long time since I let myself write here. That needs to change.

It Hurt Too Badly Then.

My last entry was private because I wasn’t sure if I could handle response to it. But, it’s been months now — so, in the interest of honesty — I feel like it’s only fair to share that Adam and I had to make the terrible choice to end a very wanted pregnancy at 14 weeks because of a whole bunch of bad physical shit involving both the baby’s and my likelihood of survival. It was a layer of hell, and I’m glad it’s over. It’s been about 2 months since the surgery, and I’ve never been more vehemently pro-choice or more grateful to live in Illinois.

It Hurts Right Now.

I saw Dr. J (my neurologist) in December, and he let me know that he expected me to have a flare because of the surgery, just like I would have if I’d been able to carry to term. Well, it’s presently medrol dose pack time for me, and I figure if I can’t write about having an exacerbation my 10+ year MS journal, it’s time to hang up my blog… and I’m not ready to do that.

It Just Might Hurt Forever.

Also in the interest of honesty — I’m genuinely sorry for saying that I “conquered” suicidal thinking. That shit is habitual AF after 30 years. So, the thoughts still happen most days, and I am still expert-level at acknowledging the thoughts and dismissing them — or telling Adam when they get persistent and not engaging in active self-harm.

It was blithe of me to act like I was “all better.” Truth is, I understand myself a lot better, and getting to that point was freeing. But 30 years of consistent incorrect thinking doesn’t re-route over night, or even over a decade, apparently… much as I wish it would. I just hope, in the great someday, when I actually am dying (not by my own hand), that the part of me that begs for relief or release finally gets to be happy, right at the end… though I’d settle for passing without there being a moment to acknowledge I’m done. I wouldn’t want the opportunity to judge my story like a book. I’m too harsh a critic.

But Life Is Pain. Anyone Who Says Otherwise Is Selling Something.

Real talk, someone I barely knew died about a couple of weeks ago. She was vibrant, sarcastic, geeky, and hilarious — and friends with a bunch of my friends from growing up. I thought really well of her, despite not being close. Her death, while it has no day-to-day affect on my life, hit me harder than I could have anticipated. I’ve been thinking about her (and our mutual friends) every day since I found out.

I keep wondering “Why did she just randomly die, and not me?” It’s a question that is only natural when someone younger than you dies — especially for anyone who is already acutely aware of their mortality and natural human fragility. I keep trying to answer that question, as though an answer exists. (Ha!) I both want to vent my unquenchable fury at the random chaos that is existence *and* justify my being. So, I’ve been trying to focus on being kind and supportive of others. It’s more productive.

Should I Be Selling Something?

In that vein (kindness and support), I’m still working on refining the keto cookbook. I’ve even gotten a domain name for it, and I’m thinking about setting up a simple meal-planning/support service. I just wish I felt more confident in offering that sort of help without a nutrition degree.

I’m doing my best, sticking to the diet and staying under 20 net carbs, but all the seizures I’ve had this week have me questioning if I actually know what I’m doing. More and more, the answer seems to be “no.” Of course, MS does sort of gaslight you about how your body’s supposed to behave… but I think it may be wise to buy a blood testing kit to be sure that I’m actually accomplishing neurologically therapeutic levels of ketones. I’ve heard that the pee strips lie.

Unfortunately, the blood glucose/ketone meters are ~$60, and the test strips are a buck a pop (on Amazon, at least). I’m going to call Aetna tomorrow and see if they offer it to Medicare patients through mail order for cheaper. Heck, even if they don’t, I should probably get one anyway, in the interest of honesty.

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.

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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!  

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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.)

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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. 

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.

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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.”)

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  • 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!

The Things We Cannot See

Posted in Just Life., Multiple Sclerosis, Paleo Diet, Science, Uncategorized by

It’s been a while since I gave myself license to sit down and write. It’s easy right now because I’m sick with laryngitis, and my mother-in-law has Henry.  After the miscarriage (which took an inordinate amount of time to resolve), I ended up having an MS relapse.  Immediately following the 6 days of oral steroids, I am now sick… so, it’s been a challenge to get basic things done, let alone to opine on the finer points of life. That being said, today is World Mental Health Day, and I write extensively about my mental health, so it seemed like a good time to give everyone an update.

The Banal

Recently, I’ve been taking a second look at the Wahls Protocol.  It’s a diet plan that Dr. Terry Wahls used to help her decrease the negative symptoms of MS.  Obviously, long-time friends and readers know that I tried the paleo diet to improve my MS symptoms and found very little relief from seizures, but some relief from fatigue.  Unfortunately, the number of dishes I created by following the diet used up any extra energy.

In the last month, scientists have discovered the brain’s lymphatic system.  This might not seem like a big deal at first, seeing as how the rest of the body has a lymphatic system, but for those of us with MS, it’s huge.  Essentially, this is not just proof of the immune system interacting directly with the brain, it’s the hardware in our bodies that make it possible. It’s literally part of our immune system, and it’s integrated throughout the entire brain… and until just now doctors didn’t even know it was there.

For those of us who have experienced the terrible side effects of MS disease modifying drugs, it’s galling. There’s something terribly unnerving about reading that “The discovery of the central-nervous-system lymphatic system may call for a reassessment of basic assumptions in neuroimmunology.” Essentially, it means that we’ve all been sold insanely expensive, and potentially harmful, snake oil.  It reminds me of how “bleeding” patients with leeches to “balance the humours” used to be a real thing, which is kind of scary if you think about it.

The first mystery these scientists need to solve is how those vessels receive and dispel fluid, anyway.  They already suspect that the flow of glymphatic fluid (That’s the fluid that goes in and out of the lymphatic system within the brain.) may affect folks with Alzheimer’s or other neurological diseases that disrupt sleep… like MS!

The article states that “The flow of glymphatic fluid can change based on a person’s intake of omega-3 fatty acids…”  And that means that aside from the brain-gut connection, we can find evidence to improve our neurological health by eating well here, too.

I already take 750 mg of Mega Red Krill Oil every day for Omega 3 supplementation.  It’s been helpful for lowering my triglycerides, and I believe that its use in conjunction with Vitamin D3 has been more helpful as an antidepressant for me than Effexor or Cymbalta ever were.

So, I’m looking in to Dr. Wahls’s research and am about to start Phase 1, which is simply adding 9 cups of vegetables a day (3 cups of dark, leafy greens, 3 cups of sulpherous, and 3 colorful.) to your diet.

Whether or not I will move forward to Phase 2 (which includes going on the paleo diet again — but this time using the autoimmune protocol), is yet to be determined. I think that it might be too difficult to try to keep paleo/keto with a 2 yr old in the house who basically subsists on Peanut Butter Ritz Bitz, Goldfish, and cookies. (Don’t worry. I offer plenty of fresh fruits and veg too.)

So, for now, I’m more interested in feeding my mitochondria the nutrients they need to produce energy than I am interested in reducing inflammation in my body by avoiding foods that I may (or may not) have reactions to.

The Sublime

With all of that setting the stage — I have to let you know that it has made me think about the bigger picture.

Back when I was living in California, I got the chance to take a walk and chat with Reichart Von Wolfshield — a notable scientist, and a pretty cool guy to hang out with. During our walk, we shot the shit about atheism vs. being a believer in a higher power.  I was very well aware of his staunch atheism, and he was curious as to why I am a devout believer in God.

He wanted to know why, with a lack of evidence, I am so sure that God exists. My personal take is that everything is God — the whole universe and anything beyond — everyone and everything is a part of this higher power, which is part of why we don’t necessarily notice it. It’s too big to comprehend, and it very likely lacks the sort of sentient thought that we would like to attribute to anything that is omnipotent and omnipresent.

My actual response to him that day, however, was that I know that people are very limited creatures — that we can only see part of the visual spectrum and hear part of the auditory spectrum, and that I simply believe that since the concept of God has existed alongside all of humanity, it must have basis in reality, even if we cannot substantiate it yet with science.

The discovery of the lymphatic system in the brain reminds me why I believe in God’s existence — not because it makes me more hopeful for a cure for my ailment (thought it certainly does), but because 2 months ago, we didn’t believe it existed, even though it did, and even though, more than likely, it was present for of all of humanity leading up to now.

I genuinely wonder what we’ll “discover” tomorrow.

Giving Integrated Medicine A Shot

Posted in Multiple Sclerosis, Paleo Diet, Uncategorized by

Tonight, I’m seeing a doctor that specializes in integrated medicine. She’s a medical doctor, a chiropractor, and she studied Chinese traditional medicine (acupuncture/acupressure/herbs) too. She thinks she can help me get my current comorbidity status to look a little less fucking scary before trying in earnest for a new party member. 

For anyone who hasn’t been playing along for several years, I’m looking at MS, seizure disorder, hypertension, high cholesterol, obesity, GERD, NAFLD, PTSD, and depression. Oh, and my immunoglobulin is crazy low, but that doesn’t have a name yet… Anyway, I’m trying to avoid type 2 diabetes, lose weight, improve fatigue, and, you know, just generally not die early from lack of exercise, shit nutrition, etc.

They took almost a full pint of blood for the majillion (okay 8 or 9) tests she had me get on Saturday. On the one hand, I’m excited by the thought that someone might actually help me figure out my health puzzle in a way other than just adding more pharmaceuticals to the mix. Feeling better would be awesome, but my pessimistic mind won’t let me believe it’s something that could actually happen.

(I’m actually kind of afraid of how harshly I know my inner critic would judge my present life if I suddenly had more energy. I know that it does shit like that because when I stopped having nearly constant seizures after coming off of Cymbalta and Abilify for a video EEG in 2014, I became suicidal because I believed I had been doing literally nothing but seizing and watching TV for about 4 years. That was an erroneous belief, BTW. I wrote the Tao of Rae and created the Paleo Compendium during that time, and that harsh critic is part of depression. Depression is a motherfuckin’ liar 98% the time.)

On the other hand, I’m really not looking forward to whatever crazy, pain-in-the-ass diet I absolutely know she’s about to put me on. If I were a betting lady, I foresee a recommendation of AIP or Wahls Way… because before she sent me for the tests, she said, “You know, most of your ailments can be traced back to gut health.” *GROAN*

Either diet makes me want to weep because my son’s diet is at least 50% Ritz bitz or cookie bars of some sort — which mean that my diet, for the last year or so, has increasingly become that of “whatever Henry has left over.”  This means major changes for my family. I’m not looking forward to them… but I am hopeful.  And, on the bright side, I’ve got a decent resource already ready for myself.

I’m not entirely sure how I’m going to deal with Henry’s diet in conjunction. I know that I can avoid eating Ritz Bitz, but I’ve also been reading up some on Paleo Mom‘s website, and I’m feeling allllll kindsa guilt over the fact that apples and bananas are pretty well all that my toddler wants to eat in the “fresh fruits and veggies” department.  Hell, half the reason that I feed him the Plum Mighty Snack Bars is because they’ve got hidden veggies in them and all kinds of vitamins and minerals.

I’m just fucking exhausted most of the time, and that’s no way to live. I just don’t know where the energy to clean out chamutz from my house and start exercising more is going to come from. I can barely keep up as it is.

And that’s why we finally got a Care.com account and are looking for a mother’s helper for a few hours a week… but interviewing candidates is another layer of awesome stress, coated in PTSD grossness.

Anyway, Henry woke up early from his nap, so I need to go do things in the other room with him.  How could I stay away from this face?

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