Apples & Oranges

Week 15!

week15-2I’m currently very amused by the fact that some websites say our¬†baby is the size of an apple and others say s/he is the size of an orange. There’s something poetic and hilarious about it because it means that you really can compare apples an oranges, at least as far as size is concerned. ūüôā

week15 For all interested parties, I am now showing! ¬†Most of my clothes, though, are loose, so unless you felt my belly, you still wouldn’t know. ¬†One of the perks of losing ~20 pounds before conception has been that most of my clothes still fit very comfortably, jeans aside. ¬†I basically am living in my pajama pants and t-shirts. That hasn’t stopped me from falling in love with maternity clothing, however. ¬†I honestly believe that belly panels and shirred sides on shirts are some things that plus-sized women’s fashion has been desperately needing for a long time.

And can I just say how totally bizarre it feels to have all of your organs shifted around and up, and for your lower abdomen to start feeling kind of like an inflated ball? ¬†Because it’s straight-up weird. And it’s occasionally acutely painful. ¬†The best way I can describe it for guys or ladies who haven’t experienced it yet is that sometimes you get cramps that feel sort of like the cramps you get when you are super constipated and really have to make a bowel movement, but slightly higher in your abdomen… and no amount of pooping is going to make anything better, so eating a big handful of prunes, while great¬†for its fiber and nutrients, is ultimately folly.

This week has been much better in the realm of tummy issues, though. Only 1 day where I got sick Рotherwise, things are alright!

One thing that has been¬†a bit disturbing to me is that I’ve had a few seizures. ¬†Not like, a ton or anything – heck, it’s nowhere close to what I dealt with prior to pregnancy, but it still freaks me out when it happens. ¬†I got so used to not seizing! I got some tinglies in my feet and back yesterday too, so I’m willing to bet money that I’m fighting off some kind of ickyness. It’s nothing to be worried about, just so you know. My epileptologist told me that as long as I continue breathing through the seizures and am not falling, it’s not likely to harm the baby. Her biggest concern is making sure that me and Hush Puppy have sufficient oxygen at all times.

Pre-Birth (or “Soul”) Contracts

contract-ariel

So, one thing that Facebook is really great for is introducing me to concepts that are second-nature to friends of friends but are totally unusual and bizarre to me.  One of these things is the concept of the Pre-Birth Contract.

A quick summary: Before you were born, you and a bunch of spirit guides got together, reviewed your last lives for what was good and bad, and decided a path or “destiny” for yourself to move towards enlightenment — to better understand what life is all about — to better understand how you are a part of God. ¬†This solidifies the idea that there are no coincidences or accidents — this was all part of God’s (and your) plan. The curve ball? ¬†You forget all about the contract you made upon incarnation and have to experience it without the knowledge that you’ve chosen your path for your higher self’s greater good. That’s the only way for you to experience¬†free will and the ability to creatively problem solve.

At first blush, this notion made me angry (It seemed like the cruelest form of victim blaming I’d ever seen.) and then it amused me greatly. My response to my friend’s friend was, “If I planned the life I’ve gone through for my greatest good, I am a serious pain in my own ass.”

I mentioned it to Adam, who is an even bigger fan of table-top roleplaying games than I am, and his immediate response was, “What a neat idea! It’s like cosmic character creation.” He made a joke about how there’s got to be real estate in Heaven, and that we’re all just trying to get to the de-luxe apartment in the sky — that folks with harder lives get better quarters. ¬†Imagining that I’d get better digs because of MS and seizure disorder gave me the giggles. ¬†When I said, “I’m doin’ it all for us,” he was quick to remind me that we’re only married until death, so he’d have his own place. ¬†I asked him a moment later if my eyes were actually shooting laser beams into his face or if I was just imagining it. ūüôā

I wondered if Hush Puppy was currently in negotiations, or if that happened before conception. ¬†Then I wondered, with all the things I’ve endured (and continue to endure), what enlightenment my soul was after.

Why NOT me?

whynotmeYesterday, my friend Erika wrote a great blog entry about how she deals with self-pity in regard to having MS. Her tactic is not to say, “Why me?” but rather “Why not me?” ¬†She reminded us all that everybody’s got their burdens to bear, and that it’s better to do so without unnecessary sadness over the hand you’ve been dealt — but then she said something that I’ve seen many, many folks with MS say. ¬†She said, “I want my ‘old’ life back.”

For whatever reason, when I read that, it made me think about those Pre-Birth Contracts. It made me wonder, “What am I trying to learn?”¬†I can’t count the number of times over the last 7 years that I’ve wished that I never developed¬†MS… the number of times I thought about how much better life would be if I were still able to drive… to be a full-time attorney and to still perform musically without fear of experiencing seizures on stage… the number of times I have shamed myself for not being an equal financial contributor to our household… the number of times that I worried about being a burden to the people I love, or worried about frightening children with my seizures… the number of times I’ve had to fight suicidal ideation.

It got me thinking: what good has come out of dealing with MS and seizures? ¬†And the answer was, “Quite a lot.”

The Upside of Down

findthegoodHaving MS and seizures has caused me to learn many lessons that I would not have otherwise have learned.

  • It’s absolutely forced me to learn the importance of regular meditation and/or prayer for physical and mental health.
  • It has highlighted the need for¬†self-compassion and made me learn how to practice it.
  • It’s made me question the way that I think about everything – and to constantly examine those thoughts for truth and rationality.
  • It’s made me wildly change my expectations of myself and others.
  • It’s made me face some of my biggest fears (like spending huge amounts of time alone or being locked up in a mental hospital against my will) and to learn how, not only to cope, but to thrive in situations that prior to seizures, I would have avoided at any cost.
  • It’s required me to face demons of past abuse and to do the hard work to move as far past those memories as possible by both growing as a person and learning to forgive the people who caused me harm to begin with.
  • It’s made me take a long, hard look at what I thought was important and to reassess my priorities.
  • It’s made me redefine what love means, and to see how vital it is to not only feel gratitude, but to express it loudly and regularly.
  • It’s made me a more kind, empathetic, compassionate person to others.
  • It’s made me much, much more patient. (Which isn’t saying much, since, emotionally, I’m still wildly impatient – especially with myself. Still, 2014 Rae is way more patient than 2006 Rae.)
  • It’s made me redefine what it means to be a good friend, and to more fully appreciate the people who¬†are willing to be on this ride with me.
  • It’s made me painfully aware of mortality, of the importance of never taking any aspect of your body or health for granted, and of the fact that doctors are just people who are doing their best to help people with the knowledge that they currently possess.
  • It’s helped me to recognize what’s really important versus what society and advertisers suggest are the things we should be focused on.

If it weren’t for my disability, I wouldn’t have the privilege of staying at home with my future children. I wouldn’t know, deep down, that the most important work I will do in my life will be to raise kind, emotionally intelligent, community-minded, curious kids. I would be trapped in the Quest for More Stuff and More Power.

I wouldn’t know the joy of the double-nap day or the freedom that comes with being able to say, “The dishes and laundry will be there tomorrow.” ¬†I wouldn’t be able to laugh about people who are genuinely fretting over fashion or other “first world problems.”

Does that mean that I’m grateful for my challenges? ¬†OF COURSE NOT. That would be silly. Challenges suck! Nobody’s genuinely grateful for disability. ¬†But I am genuinely grateful that there’s gold to mine from the rubble. I am genuinely grateful for growth that wouldn’t have otherwise occurred.

When I think about my “old” life and my current existence, it really feels like looking at two very different people… sort of like comparing apples and oranges. ūüôā

But either way, the fruit is sweet. Life is good.

Everyday Earbug

And just because life is amusing in its serendipity, while I was writing this, I found out that one of my favorite bands (Marina and the Diamonds) has released a new single. ¬†The name? “Froot.” ¬†I couldn’t make this up if I wanted to. ūüôā Hope you enjoy.

Happy Friday!

A Very Cold Love Story

My Review of the Cool58‚ĄĘ Secrets Vest

A while ago, I picked up the Cool58‚ĄĘ Secrets Vest from Polar Products after spending a lot of time researching cooling vests.

It wasn’t bad! A¬†few weeks later, I received a request from the company to write a review on their site. ¬†I know several of you were interested in learning about whether or not it was a good investment as well, so I’m sharing the review here as well. This was what I wrote.

“Great for large-chested women with MS!” ¬†
Details: I got the Cool58 Secrets Vest because most of the other cooling vests were more like traditional vests – they went over your shoulders and chest. Personally, I am a large-chested lady, so finding a vest that would have a snug fit was challenging. The Cool58 Secrets Vest is great in that regard. It fits comfortably on my abdomen, above my belly button and below my bra. It’s easy to sit while wearing it, which makes it ideal for bike riding and use at the gym.So, why a 4 and not a 5? A few minor things. First, I’m not sure that the upper abdomen is the most effective spot for cooling the body. Depending on the kind of bra I’m wearing with it, I sometimes still end up with sweaty boobs and 1 inch lower have a cold tummy. It’s a weird feeling. Secondly, for me, it doesn’t cool enough on its own to be a stand-alone. I almost always end up grabbing something to put on my neck to help in addition. (So one of their kits might be good to try.) Lastly, it takes a while for the packs to “freeze” if you use the refrigerator instead of the freezer. Since I’ve ended up using the freezer anyway, I kinda wish I’d gone with the Kool Max Secrets Vest.At the end of the day, it’s great to be able to walk around in the heat without MS kicking my butt. My complaints are honestly minor.

You Can’t Ask For Better Customer Service Than This.

You can imagine my surprise when I received this email the very next day:

Thank you so much for writing a review about your Cool58‚ĄĘ Secrets Vest! We really appreciate you taking the time to share your thoughts with other customers.

It sounds like you might be interested in the Kool Max¬ģ Packs, since you are freezing the Cool58 packs. I would be happy to send you four to try in your Secrets vest. Let us know how you like them in comparison to the Cool58 packs!

Thank you very much for your business, and if there is anything you need in the future please let us know.

Warm regards,

Erin
Polar Products, Inc.

I was over the moon! ¬†A few days later I received not only 4 Kool Max¬ģ Packs that fit into my Secrets Vest, but also a Kool Max¬ģ Deluxe Cooling Neck Tie! I was shocked and excited.

How do I love thee, neck tie? Let me count the ways…

cervicalcollarPrior to receiving this gift, I had used an Elasto-gel Cervical Collar to cool my neck. I loved it! But it didn’t last more than a half hour, which is fine if you’re just using it after going the chiropractor, but not the best if you’re battling heat sensitivity.

In contrast, the Kool Max¬ģ Deluxe Cooling Neck Tie is freakin awesome in terms of how long the cooling power lasts. Truth be told, I haven’t tried wearing it longer than an hour or so, but I didn’t take it off¬†because it had lost it’s cooling ability – I took it off¬†because I was cold! And even better, it didn’t¬†look nearly as weird to wear out in public as the Elasto-gel Collar did.kooltie2

I wouldn’t use the neck tie as my only cooling device¬†if I was going to the gym or hanging out in weather that’s hotter than 80 degrees, but when it’s in the 70s or below (or if I’m inside and in air conditioning), I don’t even think about putting on the Secrets Vest anymore, it’s so intensely cold. It gets the job done on its own, and makes doing the dishes so much easier for me.

Another thing I really like about the neck tie is that you can easily take the Kool Max packs out of the tie to wash it — or to use the Kool Max packs with another tie/scarf! ¬†You don’t *have* to use the tie, though it is convenient. If you’re trying to look your best, you can even wrap those packs up in a fashion scarf that you have that won’t be damaged by water condensation. (No silk!)

Kool Max¬ģ vs Cool58‚ĄĘ

The Kool Max¬ģ packs are *so* much colder than the Cool58‚ĄĘ packs. The difference is actually kind of stark. Come to think of it, there’s probably a difference of 58 degrees.

You can activate¬†the Cool58‚ĄĘ packs, put em in the vest, and put the vest directly on your skin and it’s still comfortable. They’re designed to stay at 58 degrees. It’s a calming kind of cool — like drinking a nice iced tea on a hot summer day. It’ll cool you down, but it won’t make you cold. The stuff inside the Cool58‚ĄĘ packs will even squish and break apart if you press on it. The stuff inside the packs acts kind of like a wax.

Not so with the Kool Max¬ģ¬†packs! They’re essentially blocks of ice, and are just that cold. You actually need a t-shirt or something under your vest or it can be too cold to handle. And that’s not a bad thing – especially when you’re trying to have an effective workout! ūüôā Wearing a shirt under your vest¬†also keeps it¬†cleaner longer.

At the end of the day, for folks like me who immediately get MS symptoms as soon as they’re a degree over their normal body temperature, I would recommend the Kool Max¬ģ¬†line over the Cool58‚ĄĘ line every day of the week, just for sheer intense power of cooling. And I definitely would go for a neck tie, because I honestly didn’t even realize how incredibly helpful they could be.

For folks who don’t have MS and are looking for something to keep them cool at the gym, I think¬†Cool58‚ĄĘ is a great solution. For folks with MS,¬†Cool58‚ĄĘ is great if you’re trying to stay cool for short periods of time, are indoors,¬†or¬†aren’t being very physically active. Otherwise,¬† Kool Max¬ģ works like gangbusters.

Thank you, Polar Products!

I want to take a moment to thank Polar Products for giving me the opportunity to try their other line of products and review them. This experience has been very valuable, hopefully not only for myself, but for other folks who are debating on whether or not to get a cooling vest because they can’t decide what kind! (And to those folks, I say, “Quit debating! Get a vest! They help!”)

iceheart2

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

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‚Äôs 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.

‚ÄúThe anti-LINGO-1 trial is likely the first of many that will test drugs that have been shown to enhance remyelination in [mouse] models,‚ÄĚ wrote Pedro Brugarolas, Ph.D., and Brian Popko, Ph.D., of the University of Chicago, Illinois, in the editorial. ‚ÄúSoon 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.‚ÄĚ

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 ‚Äúartificial neural connection‚ÄĚ (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.

yayscience

A Letter to Myself

Hey, Rae.

You’re having a tough day today. You’ve already had so many seizures that you’ve lost count. You barely have enough energy to get up and do things, but you’re still trying your hardest. You’ve put up some laundry, made the bed, and most importantly, you called your neurologist to request medicine.

Having seizures is no fun. They mess with your memory and perception of time. They mess with your motivation. They mess with your ability to be the kind of person that you want to be. Please, don’t ever let them stop you from trying to be that person anyway.

I’m not sure, when you start having multiple seizures per day and are getting tingles on your back and feet and left side, why you don’t immediately call the doctor to ask for medication, but you don’t. Ok, that’s not entirely true. I know you cling to the hope that it’ll pass. You reason to yourself that you’re either overheated somehow or are fighting off an infection that you don’t know about. The most treacherous part of regularly having pseudoexacerbations is not that they occur, but that you can never trust your body to let you know when what you’re feeling is not a pseudoexacerbation, but a real relapse. Pseudoexacerbations rob you of your ability to trust yourself. Keep listening to your body anyway.

Today, it’s a beautiful day. It’s mostly sunny and a perfect 68 degrees outside. I know you desperately want to get up and walk the dog and then walk to and from the grocery store to make some kind of delicious dinner in the slow cooker, but your body is telling you that you really shouldn’t try to do that, for your own safety, and you’re angry about it. It sucks! Nobody wants to be trapped indoors by their body.

But remember, it’s not always like this. There will be days when you can do 45 minutes of cardio as well as weightlifting at the gym. Just not today. Today is about exercising self-compassion and resting.

I hear you, raging in the same brain that is writing this letter. I hear you crying and screaming about how this is all terribly unfair, and you’re absolutely right. It is! There is nothing fair about multiple sclerosis. And that’s okay. Life’s not fair. We all do the best we can with the life we’ve got.

Even though I know you want to get up and do a million different things – putting up the dishes, folding the laundry, cooking something for lunch, washing out the bathtub, or any of the other things you keep fixating on, like practicing yoga, playing guitar, or learning to sew… I’m telling you to take a nap. I don’t care that you only woke up 3 hours ago. You’re tired. You’re so tired you can barely keep your eyes open as you type this. Please stop pushing yourself so hard and being so mean to yourself about what you’re unable to accomplish. It’s not helpful. It doesn’t make you feel good, and it doesn’t accomplish anything productive.

Thank you for letting me write this letter. I know it’s weird and embarrassing to be publishing something like this to the public, but maybe someone else needs to hear the same things you do… so I’m saying them.

You don’t have to compare yourself to anyone else. They’re walking their path. You’re walking yours. Just do the best job of taking care of yourself that you can. That’s all anyone who loves you actually wants from you.

‚̧

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

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.

awesome3

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!

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

awesome1
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. ūüôā (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

Cool. Cool cool cool.

Well, that lasted a day…

ohwellI decided it was not worth it to stay off Facebook because I couldn’t listen to my Spotify playlists or publish this blog to all my friends on there. Also, I missed everybody, and it is my primary way to socialize, thanks to MS.

It wasn’t a total loss, though. I did get some graphic design work done yesterday for a good friend and have realized that I want to include things on this blog that I do every day on FB. From now on, 3 Great Things is gonna be a staple here. I’m thinking that the Daily Cute belongs here as well. One last “daily” item that I will be adding is a music video, because I watch at least 1 decent music video a day.

Awesomeness for Thursday, July 31st.

awesome
3 Great Things About Yesterday

  1. Made it back to the gym and put in a half hour on the treadmill without seizing from overheating.
     
  2. After Adam sent back the Skin Balancing Kit I’d purchased from Paula’s Choice (which¬†irritated the everlovin’ hell out of¬†my skin and made it bright red, tight, and embarrassingly¬†flaky), I was able to find good skincare at Walgreens for about half the cost. I will never order skincare from a mail order company ever again. If I can’t swap it out immediately and for free if it doesn’t work for me, I’m not interested. While Paula’s Choice says they refund all your money if you’re not satisfied, you still have to pay to ship it back and then wait up to 2 full months for your refund. ūüėõ ¬†I’m calling it a learning expense.
     
    For any interested parties, I’m now using CeraVe hydrating cleanser, Olay Regenerist micro-sculpting fragrance-free serum, CeraVe SA renewing lotion, and CeraVe PM moisturizer. The only things I’m missing are toner and sunscreen, and since I’m in the apartment¬†99% of the time, I’m really not that concerned about either.
     
  3. Really enjoyed dinner: baked salmon, asparagus, and rice w/ some moscato wine.

Daily Cute
Today’s Daily Cute comes by way of my friend Fox Circe… so it is, of course, foxy. ūüôā



Today’s Earbug
Today’s Earbug is a catchy little ditty (written by a Big Machine’s Aaron Scherz) that, on its surface, empowers women by complaining in the lyrics about how the country music industry has made them into sex objects, but subversively maintains the status quo in the video.

Feminism aside, it’s been stuck in my head all damn day.

Staying cool…

staycool
I still have not settled on a cooling vest. There are too many options out there, and I have no idea which one is right for me. I have, at least, decided against an evaporative cooling vest.

I’ve had a tab open to this one for a full week now. I haven’t gotten it because it’s pricey and goes over your boobs. In my case, that means that it’s going to sit on top of my chest and not under my breasts and against my abdomen (which is where a lot of heat accumulates.) Because of that, I don’t think it’s probably my best bet.

This one looks like it’s adjustable for the female form, but I can’t reasonably go for it because for it to work, you also have to wear a $400 water reservoir and power supply.

The Kool Max Secrets Vest is the least expensive of all of them at $54 and looks to me like it might be the best design for me because I would not need to worry about my chest at all. It’s basically a 5″ long waist-cincher made of cold packs.

The only complication to making my decision is that there are 2 other waist-cincher model vests by the same company that are very similar — the Kool Max Slim Torso Vest that is longer by 1.75″ and contains 2 extra cooling packs for only $10 more, and the Cool58‚ĄĘ Secrets Vest which is the same size as the Kool Max Secrets Vest, but costs about $25 more because the cooling packs do not need to be frozen in order to be effective. Why am I not immediately sold on that one? Because the Cool58 packs do not remain effective as long as the Kool Max packs do. I’m torn.

Do you have a cooling vest? Do you like it? Any thoughts or suggestions are appreciated!

The Quantum Mechanics Of Babymaking

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 Schr√∂dinger’s cat in a nutshell.

Schr√∂dinger’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.

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.

Upping my game.

Only In Dreams

The other night, I had a crazy dream. Because of MS, I peed my pants in public, so I just took off my jeans, socks, and shoes and kept walking — rocking teal sequin-covered pee-stained panties with bare feet and an internet-meme t-shirt… which somehow lead to meeting Lady Gaga, who said she loved my style.

In this dream, she, apparently, was good friends with my friend Mike, who had vouched for my awesomeness via quick video cell phone chat. We got into a deep, philosophical discussion over dinner, and she said to me, “If you don’t do something fun, just to please yourself, everyday, you’re doing life wrong. I don’t stay friends with people who can’t have a good time.”

I woke up the next morning feeling very inspired, and I decided that it’s time to change my current way of being and live the sort of life that I would hope for my future children to live. My goal is to become a good example of how to be a happy adult to kids who don’t even exist yet, in the hopes that when they do manifest, I’ll already be a good role model for them.

This means less time spent on FB, more time spent reading quality books, writing both in this blog and for my novel, and creating art – whether it’s making jewelry, cooking, or creating clothes. It means the return of the daily “to-do” list and yoga. It means exploring Chicago in my free time instead of staying in my apartment all the time. It means conquering my fear of using the sewing machine when I’m alone, and cutting the excuses for not practicing guitar.

It means getting back to coding and learning the newest language updates to what I already know. HTML is now HTML5, CSS is now an all-the-time thing. I don’t even know if javascript is used anymore. I need to finish learning PHP, MYSQL, and I want to find out what it takes to create apps for Andriod and iPhones.

Basically, I want to be the independent, web-slinging, hard rocking, well-read woman I used to be… and I want to have fun doing it.

Easier Said Than Done

Of course, as soon as I had this revelation, my body decided that it was time to fuck with me. Maybe it was to see if the revelation wasn’t just passing fancy. Who knows. I had one good day, and then the next one was so bad that I couldn’t even get out of bed. I literally slept all day long (20 hours total!) and only ate dinner that night because Adam ordered pho for me. I was even having a hard time drinking.

I’ve had 3 weird episodes where my body gets super hot, and I start sweating profusely – like through clothes and bed sheets, it’s that much. I’m going through one right now. It’s 70 degrees in my apartment (that’s 21 for all you fans of celcius), and I want to rip off my skin, I’m so hot.

It feels, physically, just like having a panic attack, but I’ve got absolutely nothing to be stressing about. I’m not pregnant yet. We still haven’t found the house that’s right for us – so we’re not in the moving process. I’m just struggling to be a version of myself that I am happy with and get out of this rut of being a Facebook addict with no ambition, career, or hobbies.

I don’t know whether the sweating and heat is hormonal or caused by MS, so I made an appointment with my gynecologist next Tuesday to figure things out.

In the meantime, I’m just trying to wrap my head around the whole situation and be reasonable. I can’t expect myself to go out and explore Chicago when I’ve been having seizures for 2 days straight. I can’t learn code when I’m falling asleep. The only things I think I can do is to put time limits on FB, focus on being an effective housewife, and instead of yoga, do pilates, because it’s almost all floor-based work. Obviously, I’m also doing more writing.

All I Need Is Just A Little Patience

I know that change doesn’t happen all at once. I know that I need to be patient with myself while I transition into a better way of being. But anyone who knows me well knows that patience is, without a doubt, my worst quality.

Even though I’ve become far more patient over the last 7 years thanks to MS, I still want everything, all at once, changed to fit my ideal when I make up my mind about something. But that’s magical thinking and not how human behavior or thought patterns work. It takes steps and tons of conscious decisions to get out of a rut this deep.

It also takes a commitment to treating yourself compassionately. And, as usual, I’m down on the job there. I’m already salty with myself for not having eaten breakfast this morning or having attempted morning yoga. I keep bullying myself, as though hearing “GET WITH THE PROGRAM” is going to actually motivate me, make anything better, or make the change happen any more quickly.

What’s worse is that now that I’ve decided how I want to live my life, looking at how I have been living my life for the last 4 years or so causes me sadness and shame. To put it bluntly, in many ways, I gave up on life. I let the seizures win and became a shut-in. I didn’t even allow myself to imagine that I could do more. I mean, I still went to the gym 3-4 times a week in the hopes of improving my physical condition, but I haven’t had any lasting positive change to show for it other than now having a positive emotional response to the idea of going to the gym. At least that’s something.

The truth of the matter is that growth is difficult and painful even when it’s positive and totally desired. So, I’ll struggle in the muck today. Hopefully I’ll have an easier time struggling in the muck tomorrow, and eventually I won’t be in the muck at all.