Giving Integrated Medicine A Shot

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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A Decemberween Miracle!

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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! ❤

Fitness & MS… My Complicated Relationship

In the 3 years prior to my MS diagnosis, I lost 70 pounds. I didn’t count calories. I wasn’t on any particular diet. I was single, and had decided that when I had nothing else to do (work, school, chores, or hanging with friends) that I would spend my time at the gym, doing whatever class was available or swimming. It kept me from feeling sorry for myself — especially when I was living with my grandfather right after the divorce.

When I was diagnosed in 2007, I was at my absolute healthiest. I even was in a great relationship with the guy who became my husband. I worked out at least every other day, and I was at my lowest weight since freshman year of high school, when I marched for about 3 hours a day, 4 days a week with a 30 pound bass drum. I was a mere 5 pounds away from a “healthy” BMI.

The diagnosis didn’t stop me from working out… but about a year later, seizures most certainly did. I was afraid of falling off the cardio machines. I was afraid of embarrassing myself in yoga class. I was afraid of falling down on a walk. And none of this was baseless fear. I was having hundreds of seizures a day at that point.

This lead to the only logical thing it could lead to: weight gain… and not a little bit either. I managed to gain it *all* back.

The Paleo Diet & Dances with Orthorexia

When one of my good friends found out that I was diagnosed with MS, she suggested that I start following the Paleo Diet. I laughed her off for a couple of years. It seemed like way more work than it was worth, and there was no reputable, repeatable scientific research that suggested that it would actually help me in any way.

Fast-forward to a couple of years after my seizure disorder diagnosis, and I was desperate for a way to lose weight that didn’t involve exercise. I started compiling a cookbook for myself that later became The Paleo Compendium.

My repeated attempts to adhere to the strict diet are well documented on this blog. For a short period of time in 2011, I was successful. But for the most part, it was a challenge that caused me to think about food almost all day, every day. When my therapist mentioned the word, “orthorexia,” I had never heard of it before… but I had many of the symptoms.

I worried constantly about what I was putting in my mouth. I wanted so badly to get better, and all of the propaganda that I was reading said that food was the only answer. Not medication. Not exercise. Just food. I mean, major news networks were reporting that Dr. Wahls “cured” herself with her protocol & the paleo diet. (Nevermind the fact that, in reality, she did not cure herself, but rather significantly decreased the severity of her symptoms.) If I wasn’t following that diet, I must have wanted to deal with the deterioration I was experiencing from MS, right?

I constantly worried that I was causing my MS to be worse by not being strict enough. If I “caved” and ate food at a restaurant or my in-laws’ house, I felt like a horrible person – a failure with no self-control who was causing misery to myself and anyone who cared about me. (My loving, wonderful in-laws are Polish. If there’s not bread, pierogi, or some preparation of potatoes, it’s just not a meal. Saying “no” to their hospitality always made me sad and embarrassed.)

I spent days (not just hours, but actual days at a time) adding recipes to the Compendium. I spent hours every week planning menus and making grocery lists. I started asking Adam if we could go longer between visits to his parents’ house, just so I could avoid looking my mother-in-law in the eye and telling her that I couldn’t eat whatever she’d made. I became increasingly depressed by the fact that even though I was doing everything I could do to control my eating, I was still experiencing MS symptoms. I felt guilty for craving bread, even after I acknowledged that wheat is addictive.

I was so embarrassed about having a “new” eating disorder that I didn’t even tell my husband about it… or anyone else, for that matter. It wasn’t until a friend posted about orthorexia on FB today that I felt that it was important to share my experience with others. It was only today, after several months off of the diet and 3 weeks of working with a FitBit that’s making me crazy in a whole other way, that I felt like I should come out.

The Paleo Diet is especially hard to follow for those of us with MS because of fatigue. So tired you can barely move? Tough. You can’t pick up any convenience foods. Everything you eat has to be made from scratch. Raw fruits and veggies and nitrate-free lunch meats are convenience foods to folks who are on the paleo diet.

“Eating clean” meant putting more effort into making food every day than I used to put into food prep for an entire week, not to mention the avalanche of dishes that it created every day. I would calm myself by telling myself that I was doing what I could do to keep myself as healthy as I could, despite MS. I would tell myself I was doing this for my husband, for my family, for my friends. I was hopeful that I was keeping the really bad stuff at bay.

But then, even though I was eating clean, I had an MS exacerbation where I lost feeling in my hands. It forced me to acknowledge that I cannot control my MS. Not by diet. Not by medication. MS is simply uncontrollable… but orthorexia is not. When I realized that eating paleo wasn’t stopping the MS from doing its worst, I gave it up for good. I’m pretty sure Adam and I wouldn’t have made it through that last exacerbation without Grubhub & Delivery.com.

That’s not to say that nothing good came from the experience, nor is it to say that you shouldn’t follow the paleo diet if you feel it’s right for you. There are many people who have experienced a decrease in symptoms due to its focus on anti-inflammatory foods. I know, at the very least, eating more nutrient dense food helped abate some of my fatigue.

I am happy to say that because of my time trying to follow the diet, I’ve substantially increased my intake of vegetables and still keep my grain consumption much lower than I used to. Fewer sandwiches, more salads. Fewer bagels, more smoothies. Honestly, just yesterday, I picked up a loaf of 100% whole wheat bread and felt deeply guilty…but I enjoyed the sandwich I had for lunch. Baby steps.

Working Out & Pseudoexacerbations

Regardless of diet, exercise is important for people with MS. It helps fight fatigue and depression, keeps your heart healthier, and helps regulate bowel and bladder function. Honestly, there’s no downside to exercising besides being sore the next day. The only problem is that it’s scary.

Why’s it scary? Because it can easily make you feel like crap. Uhthoff’s phenomenon causes MS symptoms to show up temporarily when your body temperature rises by even half a degree for some people… and exercise, well, it raises your body temperature. The good part of Uhthoff’s phenomenon, however, is that once your body temperature gets back to normal, the MS wonkiness stops. Because of this, I’ve decided that it’s well past time that I invest in a cooling vest.

When I looked at the scale in 2012 and saw a number that was higher than I’ve ever seen, I decided that I could no longer afford the “luxury” of being afraid of working out. Since my seizures are entirely caused by MS, this means that I have a disproportionate amount of seizures at the gym.

Fortunately, I’ve stopped worrying about what will happen if I seize while on a machine. I can tell you exactly what will happen because it’s happened so many times I can’t even keep count anymore. Adam will pull me off the machine and I will sit down until I feel better enough to walk to the car, and then I’ll try again the next day.

I’d hoped that I would be able to lose weight as quickly as I did in 2004-2007, especially since I was dieting and exercising, but that just hasn’t been the case. I started back at the gym in 2012, and here in 2014, I’ve only lost about 20 pounds — and 10 of those were in the last month alone.

Curious what changed in the last month or so? I stopped taking all medications other than my blood pressure medication and got a FitBit One.

FitBit Makes Me Crazy, But It’s Effective.

As I mentioned in a previous entry, I received a FitBit One as a part of a study on the effectiveness of activity trackers on improving MS symptoms. So, for the last 3 weeks, I’ve been logging all my foods in MyFitnessPal and all of my activities on Fitbit’s website.

Yesterday, I stepped on the scale, expecting to see no change. FitBit had told me that I was only at a deficit of 637 calories for the week. I was shocked to find that instead, I’d dropped another 4 pounds. FitBit’s calculations had to be wrong. I realized that all of the information it provides is an estimation at best. I have come to the conclusion that the simple act of food and activity journaling is enough to make me mindful to the point that I change my habits to conform as well as I possibly can with my goals. This little device has shown itself to be as helpful for my weight loss journey as meditation has been to my overall well-being.

Because I really want to get back down to the weight I was when I was diagnosed, I’m going to keep using the device even now that the study is over. Even if counting calories makes me feel crazy some days, looking in the mirror and hating what I see consistently makes me sad. At the end of the day, I’d rather be crazy and hopeful than sad and hopeless.

Then again, I fully admit this might be about controlling what I can in a life filled with things I cannot control. *shrug* As long as it gets me to a healthy BMI, and it doesn’t negatively affect my relationships with the people I love, I don’t really care.

600th Post!

I’ve wanted to make a post for the past several days, but for whatever reason, writing just hasn’t happened. There’s been a lot going on.

First visit with the high-risk pregnancy specialist

Last week, Adam and I saw the high-risk pregnancy doctor, in the hopes that we’d be cleared to start trying for a family. Unfortunately, my blood pressure was insane at the visit. 174/95. Crazy, right? The doc wants me to lose 20 pounds and get my blood pressure under control before I see him again.

Challenge Accepted.

Doubled the hypertension medication. Got back to the gym. Fortunately, the relapse is over, and because of that, seizures aren’t stopping me from exercising. Yesterday, I was finally able to do 45 minutes of cardio again. We also keep saying that we’re going to go paleo again. We did well yesterday, but tonight, we’re going to a Blackhawks playoff game… so I guess we’re aiming for 80/20 this week.

Awesome Find: Once A Month Cooking

One of my friends introduced me to Once A Month Cooking, which has more than 2 years worth of paleo menus and recipes already made. Talk about a time-saver.

And if that weren’t enough, there are other sites for once a month cooking too, such as this Whole 30 Freezer Menu, and this article about how to freezer-cook in the first place.

Big 600!

And apparently, this is my 600th post here. That blows my mind.

Hope you’re all doing well!

My Future’s In My Hands

Can you feel me?

This has been one heck of a week. It started on Monday morning when I woke up with absolutely *no* feeling in my hands. That was scary as hell. I could still move them… I just couldn’t feel them. Surprisingly, I could mostly type. Maybe it’s because I have it so hardwired into my muscle memory. I type most of the day 5 days a week.

I repeatedly asked Adam to take me to the emergency room, but he thought we should call the neurologist again (I had called prior to 9 am and again at 10:30 am) and wait to see what he wanted me to do. The answer came around 4 in the afternoon –come in on Tuesday to see him. So, that’s what we did.

Fortunately, when I woke up on Tuesday, I could feel my hands again. They were burning and stinging terribly, but at least they felt like they were *there.* Dr. J took out a safety pin and told me to close my eyes and let him know when I felt something. I didn’t really feel the pin until he was at the upper part of my arm. I felt a little pressure, but certainly no sharpness. I thought he was playing a trick on me or something. I really didn’t feel the pin at all on my hands. Adam, however, has assured me that I got poked repeatedly. This did not sit well with me.

Dr. J asked what I wanted to do. I told him that I’ve always had solu-medrol when I had an acute MS exacerbation, and was immediately told that there’s a national shortage of solu-medrol right now and that he couldn’t give me any without MRI proof that I have new, active lesions. (Maybe I’m being simple, but isn’t suddenly and completely losing feeling in your hands prima facie evidence that you do have new, active lesions in your spine?)

So, instead of putting me on an IV of corticosteroids, he prescribed a second medrol dose pack (I took 1 two weeks ago and it only got rid of the numbness on my left side.) and scheduled MRIs of my brain and spine for 3/21. I then see him on 3/25 to discuss what the MRI showed.

For anyone playing the, “How long has this shit been going on?” game, that means that it will have been 15 days between losing all feeling in my hands and a discussion about what my MRIs show. To me, that seems like a really long time for something as important as use of your hands. Moreover, I will have finished the medrol dose pack on 3/16, which, if it works, would make the new lesions inactive, right? I wish I understood his methods, but I have to trust that an MS Specialist knows more about this disease than I do.

He also was not pleased that this happened only 4 weeks after quitting Gilenya so that we can try to start a family. He said that depending on what we see on the MRI, we’d have to have “a very serious discussion.”

I said, “We haven’t even had the chance to start trying.” I’m not going to choose to not have a family because I had one ill-timed exacerbation. That’s just crazy. I’m guessing he might try to get me to go back on Copaxone, since you can be on it even during pregnancy. I only stopped using Copaxone because he said it wasn’t doing anything for me, but I felt so much better when I was on it, regardless of how much I loathed giving myself a nightly injection.

I have no idea what the right thing is to do, to be quite honest. The only thing I do know is that if he suggests that I should not get pregnant, after all the work I’ve done to prepare my body, I’ll be getting a second opinion.

Clean Bill Of Mental Health

During the time that I lost feeling in my hands, I also had a huge up-tick in seizure activity. I was so scared about how many seizures I was having that I actually contacted my therapist so that if any of them were pseudoseizures (like many were back when I was working with EMDR), I could do the work to stop them.

Well, it was good seeing Karolina for the first time in over 6 months if for no other reason than I enjoy talking with her. I was very pleased when she let me know that I am not experiencing pseudoseizures and that I am in such good mental health that she doesn’t want to hear from me again unless I am going through some difficulties and really need her or have some happy news to share with her.

I talked to her about all my worries (none of which were irrational automatic negative thoughts!) – about what could happen if I lose all feeling in my hands and I’m holding my baby, and she said that it’s a legitimate fear, so my best course of action is to be extra careful to pay attention to my body and be safe with the baby. You know. The baby I don’t actually have yet.

My current challenge is to only worry about handling things when there is actually something to deal with! No fighting ghosts. My real job in all of this is to be fully present in the now and to continue to practice good self-care. So far, so good.

Cheesy, gooey goodness…

On a completely different note: I’ve been thinking more and more about how I really miss cheese when we’re being strict with the paleo diet.

Don’t get me wrong — I know the plan was to be strict during lent, but when you’re dealing with an MS exacerbation, you don’t always have the time or energy to cook and clean the way you need to in order to be eating clean. I have to confess, I’ve had pizza this week… more than once. And I don’t regret it even a little.

I did, however, decide, on a whim to google “paleo cheese” and was surprised to see information pop up! Apparently, there are a kajillion different kinds of vegan cheese that also fall under our paleo guidelines. (Ok, so apparently a kajillion is a term in my mind that means “more than 20.”)

To celebrate this, I created another board on the Paleo Compendium just for paleo cheeses.

The one I’m looking the most forward to trying is this Velveeta-wannabe.
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I’m hoping it’ll actually be melty and good to use when making enchiladas or jalapeno poppers.

I’ve also been thinking that I should create a graphic for the Paleo Compendium that folks can use to link to it.

MS Walk 2014 – Chicago Lakefront

It’s been a few years since I participated in the yearly fundraising efforts of the National MS Society because of seizures. For almost 5 years, seizures stopped me from feeling comfortable with exercising. Heck, I didn’t feel comfortable even walking anywhere alone. I didn’t feel safe. Fortunately, this year, I’ve overcome that fear.

Nowadays, I regularly hit the gym 4 days a week at least. Some days, I’m even so awesome that I can bike 12 miles in 45 minutes! 🙂 But I’ve also had a few days here and there where I’ve ended up seizing while on an elliptical strider or during weightlifting, and have had to go home. 😦 At least I tried! No matter what I’m doing when I’m at the gym, the goal is to honor my body, so I work out with Adam and am very careful not to over-do it.

Yesterday, I created a team for MS Walk 2014! It’s Team MS EL Redux, named after the support group that I participate in on Facebook. You don’t have to be in the group to join us or even in Chicago! You can be a virtual participant and help us raise funds if you’d like to.

I also personally registered both Adam and me for the walk. Here’s a link to my personal fundraising page. I’d really appreciate it if you would donate! And if you don’t have the funds to donate, don’t sweat it. I’ve been there. Please share the link! Every little bit of promotion helps!

Here’s a shorter link: http://main.nationalmssociety.org/goto/rachaelshapiromajka

Hope you’re having a great day! Thanks for stopping by. ❤

What’s shakin’? (Not me!)

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I can’t believe it’s already Friday of MS Awareness Week (though the whole month is MS Awareness Month), and I haven’t done a blog post. That seems kinda wrong.

To be fair, however, life has been challenging this week — lots of seizures. It was like I was back in Glendale when I was first diagnosed. I was just having them over and over again in what felt like a loop.

I called my MS specialist on Tuesday, but I haven’t heard back from him. His nurse called and scheduled me for the soonest opening, which is March 21st… two weeks from today. (He’s actually booked up through June!) I think I’m going to call and cancel it. I was having really intense pain in my lower back and unrelenting seizures when I called in the first place, and now, I’m pretty much fine. I only had 5 simple partials yesterday, which is nothing. I can handle some facial twitching.

Today, so far, I’m seizure-free, and my back feels fine. I was really worried when I called that I was still having a relapse, even though I took a medrol dose pack about 2 weeks ago. My body’s been acting so weird. I’m glad that it was just a pseudoexacerbation. I must have been fighting off a cold or something.

Increase Your MS Knowledge: What is a pseudoexacerbation?

From Health Central – “A pseudoexacerbation is a flare up of existing symptoms caused by another medical event, such as a urinary tract infection, flu, or elevated body temperature. Pseudo or not, it can stop you in your tracks as sure as any true exacerbation. However, new lesions are not being formed and your MS in not really progressing.

True MS exacerbations are caused by inflammation in the central nervous system which damages the myelin and disrupts the transmission of nerve signals, causing a wide variety of symptoms. This type of event can cause new symptoms and permanent damage, lasting from 24 hours to several months. Severe exacerbations may be treated with steroids in order to reduce inflammation and shorten the length of the exacerbation.”

So, for those of us with MS, we get to feel awful while also questioning ourselves to figure out if we might be sick or too hot or whatever before we even call our doctors to treat the problem. Basically, if I feel awful for 3-4 days, I’ll call a doctor. Otherwise, I assume everything weird that happens in my body is a pseudoexacerbation.

Pseudoexacerbations annoy me less than pseudoseizures.

Since I only tend to have seizures nowadays when I’m also experiencing other MS symptoms, I always think of my seizures as being part of MS… but when I initially began dealing with seizure disorder, doctors suggested that I also see a psychologist. While they could identify the epileptic activity that caused the simple partial seizures that I experience, they were stumped by the time travel (complex) seizures and thought it was likely that they were caused by subconscious psychological issues.

For over a year, I saw a psychologist and worked with EMDR (Eye Movement Desensitization & Reprocessing) Therapy. I’ve written a lot about it. It was immensely helpful to me. In fact, the majority of my seizures stopped, thanks to the work we did.

To give you an idea of how intense and repetitive the seizures were on Monday, I actually went so far as to contact my most recent therapist to see if we could do some work (potentially with EMDR), just in case any of these recent seizures are being caused by my subconscious. She said it was good self-care, so even though the vast majority of the seizures have abated, I’m still going to see her.

(Fun fact: I found out, after already starting the therapy, that the doctor responsible for the creation of EMDR therapy is actually the mother of one of my good friends. That was pretty cool to me. I’m a big fan of her work both in the realm of therapy and as a mother, because her son is a truly awesome person.)

46 Days of “Strict” Paleo

It’s Lent! You know, the time between Mardis Gras and Easter.

This Lent, instead of giving up caffeine, Adam suggested that, just like in 2012, we be strict with keeping paleo. We’re not doing another Whole 30 or attempting a Whole 46. We’re just doing regular Paleo, so we can still have a little honey and maple syrup here and there. In truth, I am pretty sure my Whole 46 was just regular paleo too, looking back on it.

The big challenge for us will be not cheating on the weekends, when we’re out with friends and family, or when we’re feeling sick. (The craving for wanton soup when I’ve got a head cold is damn near undeniable.)

To make things easier for us (and anyone else who happens to be interested), I created a meal plan for Lent. I even made sure that on Fridays we’re scheduled to eat seafood and not meat, for all the Catholics out there who still follow that rule. (Fortunately, Adam’s as devoutly Catholic as I am devoutly Jewish. He doesn’t really care much about following a tradition that was created to help the fishing economy just for tradition’s sake. I can’t say I blame him. It’s not like I keep kosher.)

Tonight’s dinner is Garlic Roasted Shrimp with Zucchini Pasta.
garlic shrimp

Hope you’re all doing well!

Thoughts about Food.

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.