Category Archives: Science

Better living through Science

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.

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!  

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.)

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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. 

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.

A Decemberween Miracle!

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

decemberweenmiracle

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

Stem Cell Things

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

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

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

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

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

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

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

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

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

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

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

Cloth Diapering MADNESS!!!!

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

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

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

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

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

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Food-type Things

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

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

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

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

Posted in Multiple Sclerosis, Science by

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

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

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

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

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

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

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

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

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

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

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

But wait, there’s more!

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

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

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

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

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I wonder if that means folks with HIV get osteoperosis less frequently…

Posted in Multiple Sclerosis, Music, Science by

Folks with HIV get MS less frequently than average folks.

hivScientists from the Albion Centre at the Prince of Wales Hospital in Sydney, Australia have found that patients with HIV are 62% less likely to develop MS, compared with control patients. It doesn’t end there, though — it appears that the longer someone has been diagnosed with HIV, the lower their risk of MS. This finding has scientists excited about the possibility of treating MS with antiretroviral therapy that is currently in use for patients with HIV.

There are a few reasons that people with HIV might be more resistant to developing MS. The first is pretty obvious: HIV destroys your immune system. Your immune system can’t very well get on with the job of destroying your nervous system if it’s being eradicated. Suppression of the immune system is one of the primary functions of many current treatments for MS, such as Gilenya and Tecfidera.

The second reason is less obvious. There is a theory out there that multiple sclerosis may be triggered by infectious or viral agents, such as the Epstein-Barr virus or herpesvirus 6. If this theory is accurate, it completely makes sense that antiretroviral therapy would have a positive effect on the course of the disease.

Watch out for Osteoperosis!

osteoporosisAlso in MS news today is the finding that folks with MS end up with osteoperosis more frequently than folks who don’t have MS. This makes sense, since both diseases share risk factors (age, history, family history, race, gender, inactivity, low vitamin D levels, smoking), and steroid treatments for MS negatively affect bone density.

What can you do, if you have MS, to help avoid osteoperosis? Increase calcium and vitamin D intake, avoid smoking and excessive alcohol intake, and regularly exercise.

And now, time for some Awesome.

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Three Great Things About Yesterday

  1. Had 4 seizures while on the treadmill at the gym – kept walking through all of them. Adam said, when he caught me at #4 (The others were simple partial facial seizures.) that he thought it was hilarious that I was still walking. I just kept thinking over and over again “Just keep going.”  Well, sometimes you can’t… but having someone there to catch you is great.
  2. Got to wear my new, pretty, purple cross-trainers. Yay for shoes that make me smile!
  3. Sushi for lunch.

 

Daily Cute

The chirps slay me!

 

Everyday Earbug

Bang Bang!

Posted in Just Life., Multiple Sclerosis, Music, Science by

30 WHOLE Minutes Without Facebook

fbclosedThe last half hour of my life was illuminating.

At noon EDT, Facebook went down for most of us in the US. All it took was 5 minutes of it not functioning for me to get up, start doing laundry, and finally pour myself some cereal for breakfast. I came back to the computer, and it was still down… so I hopped on Twitter and blamed Hamas for the outage. (Because who else could possibly be responsible? Clearly, it was some terrorist act!) I read through my feed in less than 10 minutes. And then I hopped on G+ and did the same thing.

It’s amazing to me that I can eat breakfast and entirely catch up on 2 social media platforms in 20 minutes, but often stay on Facebook, scrolling through articles and witty shit my friends say for hours. It makes me wonder what it is about that site that has the ability to keep my attention. It must be the conversations.

Annnnnnd SWITCH!

So, I’ve gotten the heads up from GoDaddy that my domain name is fixing to expire in October. They’re trying to convince me to renew 3 months early and pay $14.99/year for the privilege. I wonder how many people are stupid enough to just go along with it. If I transfer my domain name to a different service, I’ll pay about half of that.

This has me thinking: I’ve already got web server space at 1and1.com and I also pay WordPress $13 a year for the privilege of using my domain here. This seems like a silly waste of money, especially considering that WordPress puts banner ads at the bottom of my entries, which means they’re actually making money off my blogging. (And I’m not…)

To transfer a .com domain to 1and1 is $7.99 for the first year, $14.99 every year afterward… so essentially, there’s an incentive to transfer your domain to a different service every year. What a pain in the ass!

Awesomeness for August 1, 2014

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3 Great Things About Yesterday

  1. Remember that awesome house I wrote about that Adam and I put a bid on and lost to someone who came in with a cash offer? Well, it turns out that the bank had misrepresented the amount of taxes on the property, since it’s on a double lot — so the deal fell through, and yesterday, the house went back on the market. 🙂 (We put in an offer today!)
  2. 20 minutes of bike riding at the gym with no seizures.
  3. Deep, deep love for the ability to use 5 Hr Energy, Aleve, and Afrin.

Daily Cute
The folks at Animal Planet are pretty much the world’s experts in cute. What’s cuter than baby animals? Cross-species friendships with baby animals.

Hold on tight, here come all the feels.

Everyday Earbug
I love funk & soul music. Have since I was a small kid. I blame the Muppets! Today’s earbug is my favorite modern, girl group jam since the Moulin Rouge remake of Lady Marmalade. I can’t help but dance to this… and for whatever reason, I’ve convinced myself that it’ll end up as one of the songs in the Sims4. It just seems like even AI would want to shake its booty to it.

And Some Good News In The MS Research Dept.

Scientists have generated stem cells from skin samples and turned those stem cells into myelin-builders.

Check it out.

“For the first time, New York Stem Cell Foundation (NYSCF) scientists generated induced pluripotent stem (iPS) cells lines from skin samples of patients with primary progressive multiple sclerosis and further, they developed an accelerated protocol to induce these stem cells into becoming oligodendrocytes, the myelin-forming cells of the central nervous system implicated in multiple sclerosis and many other diseases.”

I’m guessing that a treatment based off of this research will be available in the next 10 to 20 years… because science is slow.

happyfriday

The Quantum Mechanics Of Babymaking

Posted in Just Life., Science by

Basic Quantum Mechanics

For those of you who aren’t brushed up on your quantum physics (or fans of the Big Bang Theory), please let me introduce you to the concept of Schrödinger’s cat in a nutshell.

Schrödinger’s experiment involved putting his cat in a sealed box with a flask of poison and a device that had the potential to break the flask of poison, killing the cat. After a certain amount of time you can’t know for sure whether the cat is alive or dead. Thus, quantum mechanics implies that, for the purposes of making any kind of predictions, the cat must be viewed as simultaneously alive and dead. (Basically, you have to consider both possibilities as equally valid.)

The same kind of thinking applies when you are in the process of trying to start a family. During a month when you’ve had sex with your partner in an effort to conceive a baby, but prior to the pee test showing a positive or you getting your period, you are both pregnant (P) and not pregnant (NP). This presents several paradoxes that can cause anxiety.

Do This, Don’t Do This

Currently, my head is spinning with the number of things that I should do if I’m not pregnant, but should not do if I am pregnant. As I am presently both P & NP, I often am at a loss for determining the correct course of action and am sort of shooting from the hip.

Losing Weight
I am currently overweight. My doctors all want me to lose weight. I want to lose weight. How do you achieve this? By limiting caloric intake and maintaining or increasing physical activity.

What are you not supposed to try to do if you’re pregnant? Lose weight or restrict calories.

What am I doing? Recording every bite I eat in a journal and damn near losing my mind wondering whether I’m eating properly. I’m focusing mainly on having good nutrition and not overeating. I aim for between 1400 and 1600 calories a day. I’m taking prenatal vitamins every day and making sure that I drink enough water.  I’m honestly hoping to continue to lose weight until I have a pregnancy test that comes back officially saying “positive.”

Weightlifting
One of the best ways to increase your caloric burn while also keeping your body healthy is to lift weights. If you are not pregnant, there’s no question that weightlifting is good for you.

If you’re pregnant, the answer isn’t quite so clear. There are people who say that lifting weights while pregnant is a good thing. There are people who say it’s bad.

What am I doing? Following the advice of the camp that is in favor of weight lifting with resistance machines during pregnancy, while listening to my body and not pushing for gains, but rather endurance. I also am avoiding plank pose. (Though to be honest, that’s got way more to do with laziness than anything else.)

Protecting My Nervous System
I have MS. This means that I need to be taking a disease modifying drug (DMD) to slow the progression of the disease if I’m not pregnant.

The only DMD that is acceptable to be on while you are actively trying to conceive is Copaxone, and most neurologists have you quit taking it once you are pregnant. I no longer take Copaxone because my neurologist determined that it was doing absolutely nothing for me, so it’s not even an option.

What am I doing? I’m not taking any DMDs. This leads to a lot of anxiety for me. On the one hand, I want to conceive and carry a healthy baby — and I feel healthier and better because I’m not dealing with the side effects of medications that suppress my immune system. On the other hand, I’m having a marked increase in seizure activity, fatigue, and muscle spasticity.

Fostering Kittens
If you’re not pregnant, fostering kittens is rewarding and fun. It’s something I’ve done for many years that brings me a great deal of joy, not only from my interactions with the kittens but from the knowledge that, despite my disability, I’m making a positive difference in the world.

If you are pregnant, it can be dangerous to deal with kittens because of the danger of toxoplasmosis.

What am I doing? Sadly, even though Adam has said he’ll take care of scooping the litter box for the duration — we’re taking a break from kitten fostering. Better safe than sorry.

Eating Sushi or having Alcohol in Moderation
There are actually scientific studies that suggest that light drinking while pregnant can be a good thing. At the very least, drinking as little as I do and as infrequently as normal will not harm the kid.

If you’re Japanese, sushi is considered good neonatal nutrition.

If you’re American, you’re not supposed to have any sushi or alcohol. And it sucks.

What am I doing? So far, not drinking or having sushi. And it’s making me cranky.

The best things in life are not safe for pregnancy.

I just want to take a moment to recognize the things that I deeply appreciate that I am foregoing while in this quantum state… the things that if I’m actually not pregnant, I’m missing out on for no other reason than caution.

  • Medical cannabis to help with muscle spasms and neuropathic pain… I miss you, bud.
  • Aleve… because Tylenol doesn’t actually do shit.
  • 5 Hour Energy/Caffeine… Naps are just not as effective as you are.
  • Afrin… Nasal washes just aren’t the same, but at least they do something short-term.
  • Soft cheeses… feta, I miss you the most.

I hope this is all worth it.

Thoughts about Food.

Posted in Paleo Diet, Science by

The Paleo Diet’s doing good things for me.

For a while there, I was not sure whether or not the paleo diet was making any real difference in my life. As of Valentine’s Day, I am sure that it’s doing good things. What significance does Valentine’s Day have? I broke diet for half the weekend. Chocolate. Sushi. Cheeseburger. Pad Thai. I was loving the break… until Saturday night (1 full day into the sugar and wheat binge), when I had so many time-travel seizures that even Adam lost count.

I am now trying to figure out if I have a problem with wheat (since gliadin antibodies are higher in folks with MS, suggesting a sensitivity to wheat), dairy (which would make sense since MS has been linked to consumption of cow’s milk), a combination of the two, or something completely different. I’m not too worried about legumes, since the only legumes I had were crushed peanuts in the pad thai, and that was during Saturday night’s seizure funfest.

I got back to sticking to the diet on Sunday, and had a total of 1 seizure that day, which was a simple partial. (No time travel!)

Splenda – not so sweet.

In the last several days, I’ve also been doing some research on Splenda. There have been a lot of hoaxes and half-true infographics circulating around FB recently, and I’m genuinely worried for my folks, who drink it in beverages regularly. I found a bunch of studies that claim that sucralose is totally safe for you as long as you don’t have too much. I was more concerned with finding peer-reviewed studies that were not funded by the makers of Splenda or a sugar corporation.

Here’s what I found:

Splenda is not an inert compound.
“Sucralose and one of its hydrolysis products were found to be mutagenic at elevated concentrations in several testing methods. Cooking with sucralose at high temperatures was reported to generate chloropropanols, a potentially toxic class of compounds. Both human and rodent studies demonstrated that sucralose may alter glucose, insulin, and glucagon-like peptide 1 (GLP-1) levels. Taken together, these findings indicate that sucralose is not a biologically inert compound.” http://www.tandfonline.com/doi/abs/10.1080/10937404.2013.842523#.UwFpL_ldUkZ

Splenda is immunosupressive.
“The cumulative suppression of Interleukin-6 and Interleukin-10 levels induced by sucralose may contribute to the inability in mounting an effective humoral response when posed with an exogenous threat.” http://www.ncbi.nlm.nih.gov/pubmed/24063614

“[E]xposure to sucralose induces a reduced humoral response that may be associated with adverse effects on the immune system.” http://etd.uwc.ac.za/usrfiles/modules/etd/docs/etd_gen8Srv25Nme4_5780_1319022717.pdf

Splenda can reduce glucose absorption and can increase the presence of cholesterol in your blood.
“It could be concluded that consumption of sucralose didn’t induce oxidative stress, has no effect on insulin, reduce glucose absorption and intensify hypercholesterolemia in STZ-induced diabetic rats. Accordingly it is advised that diabetic people consuming high amount of sucralose must check their lipid profile to avoid diabetic complications.” http://www.scirp.org/journal/PaperInformation.aspx?paperID=34006#.UwFqI_ldUkY

The more Splenda you consume, the higher your likelihood of developing leukemia.
“Dr. Morando Soffritti, director of the Ramazzini Institute in Bologna, Italy, and team fed 843 laboratory mice varying doses of sucralose from when they were fetuses until they died. Post-mortems showed an association between leukemia risk and lifetime sucralose consumption – the more sucralose they consumed, the higher their risk of leukemia.” http://www.medicalnewstoday.com/articles/262475.php

Splenda is a known migraine trigger.
“This observation of a potential causal relationship between sucralose and migraines may be important for physicians to remember this can be a possible trigger during dietary history taking.” http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2006.00543_1.x/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false

Splenda can negatively affect your insulin response, if you’re obese and haven’t been regularly using it.
“[S]ucralose affects the glycemic and insulin responses to an oral glucose load in obese people who do not normally consume NNS.” http://care.diabetesjournals.org/content/36/9/2530.short

I don’t think there’s such a thing as a safe artificial sweetener right now. Thankfully, liquid stevia, raw honey, and maple syrup are ok.

Not Letting MS Win.

Posted in Multiple Sclerosis, Science by

Adam and I have been very committed to fitness over the last year. We’ve changed many of our eating habits for the better, learning how to live without wheat and adding many more veggies to our diet. We also managed, most weeks, to get to the gym 3 times. This year, we’re going for 4 times a week. While I haven’t seen much in the way of weight loss, my body has reshaped, so that’s a step in the right direction. I know I’m building muscle. I tell you all this not to brag, but because it’s relevant.

So Ridiculously Counterintuitive…

Monday and Tuesday of this week, I was dealing with some pretty intense MS fatigue. The idea of going to the gym was ludicrous to me. (Hey, I’m having a hard time walking to the bathroom fast enough. I know! Let’s lift weights!)

Now, you have to understand, MS fatigue is utterly and completely different from being tired. You can be in a great mood, be motivated to do things, and quite literally not be able to make your body move without extreme effort.  You can be extremely sleepy and not able to actually sleep. Sometimes, it’s like wearing a lead apron over your whole body. At other times, it feels an awful lot like turning into a weak puddle of goo.

This graphic perfectly represents what MS fatigue does to you.

This is what MS fatigue does to you.

“The exact mechanism of MS fatigue is not known, but studies suggest that changes in the brain caused by MS may require MS patients to use five times more effort to complete a simple task than a person without MS,” says Julie Stachowiak, PhD, author of The Multiple Sclerosis Manifesto: Action To Take, Principles To Live By.

Never being one to take things lying down (literally!), I had to research ways to combat fatigue.

The most consistent suggestions on the internet were pharmaceuticals (like ProVigil) that I can’t take thanks to hypertension, simplifying your life (which doesn’t help when you’re already in the throes of the beast), treating depression if you have it (check!), and exercise.

That’s right — exercise.  When it’s hard to move… move more. It sounded bassackwards to me. I was actually angry thinking about it.

But it works!

According to the National Center on Physical Activity and Disability (NCPAD), “A study conducted by researchers at the University of Utah demonstrated the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, better bladder and bowel function, less fatigue and depression, a more positive attitude and increased participation in social activities.”

More recently, a 2013 study conducted by scientists at the Division of Physiotherapy and Rehabilitation at Istanbul University demonstrated that supervised group exercise training is effective in improving balance, functional status, spasticity, fatigue and quality of life in moderately affected people with multiple sclerosis, with no worsening of their clinical status.

So, despite my goo-like status late Tuesday, I cowgirled up and went to the gym. Mind over grey matter. I was honestly shocked by the immediate results.

Sure, I went slower on the stationary bike than I usually do (It was so tough!), but after about 20 minutes of entirely willpower-driven strenuous activity, I was no longer desperately wishing for sleep or even wanting to quit. I felt the heavy, pressing feeling lift. I suddenly had energy like it was a normal day. I was even able to finish up my 30 minutes on the bike and do a 15 minute cool-down on the treadmill. Like a boss.

Exercising = Having Energy

I have a theory about MS fatigue and when it hits me hard.

Last week, we went to the gym 4 times (M,T,Th, &F), and then we took the weekend off. After 2 full days without any exercise, I had some of the heaviest fatigue I’ve experienced… so I took Monday off too, thinking that my body needed the rest. (Wrong.)  Tuesday morning, I was certain I’d been run over by a steam roller in my sleep… but Tuesday night, I hit the gym. Today, after working out regardless of fatigue, I feel significantly better than I did the last 2 days.  If not for the tingling paresthesia in my back, I’d actually feel normal. Then again, I’m so used to the tinglies on my back that maybe this is “normal” for me.

Anyway, my theory is that my body now requires that I work out almost every day for it to function properly. When I take more than 1 day off from exercise, I experience fatigue. And fatigue sucks so much. It’s like gravity is trying to crush both your body and your spirit. Last night, I actually had the thought that cycling was like mining for energy… that cardio, for me, is like plugging myself into a charger. I honestly think that daily cardio exercise is going to be the only way to keep fatigue at bay.

If it really is this simple, maybe this crazy broad wasn’t as insane as I thought she was.

Neither of us is going to let MS win.