Challenges.

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

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

Physical

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

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

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

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

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

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

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

Mental/Emotional

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

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

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

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

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

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

God forbid I be boring.

*jazz hands*

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Wahls Adventure: Prologue

It’s been a tough weekend so far.

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

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

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

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

blanka

This motherfucker gets me.

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

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

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

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

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

wahls

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

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

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

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

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

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

Ah, honesty.  You’re almost optimism.

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

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

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

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

Hope you’re having a good weekend!

 

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

Well, duh.

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

smart-vs-dumb

Gorgeous, either way, though, right?

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

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

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

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

benny

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

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

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

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

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

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


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

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

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

2016dumpsterfire

Too many thoughts not to blog.

It’s been a couple of months since I last wrote. Being a mommy makes finding time to sit down at the computer tough. If FB and text wasn’t available on cell phones, I probably wouldn’t communicate with anyone other than Adam and my mom.

I just put Henry down for his nap, and even though I know I should go lie down too, I feel the need to write – so that’s what I’m doing.

There are sick people in this world. I’m one of them.

Truth be told, I’m feeling pretty rough today. My stomach is hurting really badly… like I swallowed something that’s eating me away from the inside. I’ve been having a hard time making myself eat or drink for the last 2-3 days, but I’ve been forcing myself.  Today, my stomach is hurting all the time, whether I’ve eaten or not. I’m debating making another appointment with my gastro team.

There’s definitely something amiss, and I’m becoming increasingly confident that it’s more than fatty liver. Last time I saw them, they ordered extra tests for immunology, and it turns out that I’m so deficient in immunoglobulin that they want me to see an immunologist.  That news was delivered to me a couple of weeks ago… and I’ve been waiting for their letter to arrive in the mail with their referral. That’s right, I haven’t made an appointment yet. I keep thinking this stupid thought: “Well, my MS is not progressing on MRI, so it’s probably a good thing that my immune system isn’t working right.”

Stupid. Ignoring health matters never makes them improve.

Today, my left foot is all tingles, the tops of my legs and my lower back feel like they’re on fire, most of my left chest is numb, and I am achy all over (on top of the tummy ache and headache).  Because it’s my special lady time, I’m inclined to just suck it up and bet that this is a pseudoexacerbation – but if it doesn’t go away in 2 days, I’ll call my neurologist and request steroids. I can’t not request steroids when I start having time travel (complex) seizures for more than 2 days.

Who needs The Doctor?

Yesterday, I “traveled” again… and the results were simultaneously eye-opening to me about myself and how badly I still need to work on self-compassion and how totally bizarre our world is at the moment.

See, yesterday, I woke up thinking it was 2009 and that I was supposed to take the bar exam in a couple of weeks.  The first thing I did, (Again, stupidly. There’s a theme here.) is check Facebook and try to get my bearings, since I was aware that I was dealing with post-ictal confusion.

This lead to me reading about the latest Supreme Court move that guts the 4th Amendment (Seriously, the damage to our civil rights that have happened in the last 30 years is staggering.), followed by a ton of people debating the 2nd amendment (Who honestly cares about the right to bear arms when our military is so big we could never hope to use force to overcome martial law at home? Or when cops can stop you for no reason at all just to check your status?  “Papers, please?” anyone?), followed by a ton of Donald Trump/Hitler comparison memes.

This was going on while my kid was alternating between eating crackers and throwing them at the dog. That was much less of a shitshow than the discourse I saw on Facebook.

And you wanna know what upset me? That I very clearly wasn’t an attorney. That I wasn’t doing more to fix things that are out of my control. (Our country is basically a fascist oligarchy at this point. I can’t undo that by myself, much as I wish I could.)

And then, I got angry that I’m not doing enough to fix things that are in my control. My house is too messy, and I was not ok with that… or the fact that I have no one that I can call to help me with the baby when this shit happens. Or that my husband works so far from home that even if he were able to leave work at the drop of a hat, it would be at least an hour before he’s here.

Essentially, yesterday, I realized that the world is on fire, and I am walking a tight-rope without a safety net. And I got very angry with myself for that… but anger doesn’t help anything.

I deserve to be able to call someone to be with me and Henry when I am having complex seizures.  And if that means that I need to interview strangers and hire a damn babysitter, even if Adam doesn’t think anyone can handle my seizures but him, that’s what I’m going to have to do. Henry and I deserve at least some measure of security.

Grateful.

Of course, all this emotional upset is pointless. Yesterday, we were safe. Henry spent a little more time in the pack and play than he would have liked, but he had toys and TV, and he enjoyed a lot of roughhousing with Daddy when he got home. I listened to my postictal playlist and “came back” pretty quickly — in less than a half hour, which is pretty great. I didn’t have any more complex seizures the rest of the day. Calling someone to come over would have been completely pointless.

So, who the fuck knows what the right thing is to do? I’m just grateful this doesn’t happen all the time.  Heck, last week, I was doing so well that I was able to take Henry to Gymboree every day. This week… not so much. But that’s life. You just gotta roll with it.

If you’re feeling well today, I strongly urge you to find something you can do, using your body and your good health, that will make you feel proud of yourself. Be active, and enjoy it. Exercise. Clean. Volunteer. Have awesome sex. Eat spicy foods. Go to a dance club filled with strobe lights. Watch a visually-intense movie at a theater. Drive wherever the wind takes you. Swim in the deep end. Nobody knows how long their good health will hold out, and those of us who deal with the crazy ups and downs of having multiple chronic illnesses hate to see anybody not enjoying that gift.

Carpe the shit out of this diem, people. It only happens once.

yolopug

News of the Rae

Today, I was thinking about how much I miss actively participating on LiveJournal. What I really have been missing is reading about what’s actually going on in my friends’ lives (as opposed to looking at memes about politics, sarcasm, and incorrect grammar), and writing about what’s going on in mine.  Twitter and FB are absolute shit for emotionally meaningful communication, and the only way for me to remedy things is to do some writing myself and to reach out to friends on the phone or Skype.

Medical Insurance Is A Lot Of Work

This week has been fucking crazy. I’ve gotten calls from almost every medical care provider I’ve worked with in the last 3 years because Humana was given incorrect information by BCBS of MN with regard to my coverage, and they sent out letters to those providers requesting a refund of the money they paid for my medical care.  You can just imagine how many providers I’ve seen in 3 years with my health being the way it is. Needless to say, a tiny mistake turned into a ridiculous clusterfuck (and one hellacious panic attack) for me.

See, BCBS does identification numbers weird.  Our family has 1 identification number and 3 member numbers, one for each of us. When CMS (Centers for Medicare & Medicaid Services) and Humana asked BCBS how long I’d had coverage, they only provided the identification number (because, apparently, all the other insurance companies have unique identification numbers for each person), without knowing that there were 3 members under that number. This lead to a simple, but unfortunately large, misunderstanding, since Adam’s had BCBS since 2011. It also lead to about 30 minutes of actual talking and 4 hours of sitting on hold to clear this shit up.

insurance

So accurate that it hurts.

In the end, it all boiled down to BCBS needing to fax a letter to both Humana and CMS letting them know that my coverage only started in January of this year. I just had to call back and forth between the different organizations and talk to different CSRs, explaining the situation over and over again. (For the record – customer service at BCBS is much faster to get a hold of and to work with than that at Humana.)

But I learned important things!  Like that every insurance company has a department devoted to the coordination of benefits, and that if you are on Medicare or Medicaid and you purchase private insurance or change providers, you absolutely must call CMS (at 1-855-798-2627) and also let their coordination of benefits department know, so your billing doesn’t get all jacked up.

I also learned that if you have Medicare (or Medicaid), and you choose to purchase another policy from a private insurance company, then the private insurance will always be your primary insurance, and Medicare (or Medicaid, or whatever other state-based insurance) will be your secondary.

Pharmaceutical-Grade Supplements Are Totally Worth It (For Me).

Also filed under “crazy” this week (but in the crazy GOOD category), I weighed myself after 2 weeks on the diet and supplement regimen prescribed to me by the endocrinologist I saw at BodyLogicMD.  I lost 7 pounds!  That’s a tenth of how much I want to lose, and it happened without any frustration.

This may not seem like the biggest deal in the world to anybody but me, but I seriously have been trying to lose weight for years with no success. I went paleo for months at a time. I weightlifted. I tried South Beach. I tried doubling my cardio. I tried calorie restriction, eating 1000 calories a day or less for a couple of weeks.  I  GOT PREGNANT AND HAD A BABY, and still had no change. (I seriously gained a total of 18 pounds with the pregnancy and lost 10 of it when Henry came out, and went right back to the same weight I had started at within a week.)

But now, I have movement on the scale, and all I’ve been doing is taking the supplements (prescribed based on deficiencies that showed up in my bloodwork), eating small meals every 3 hours (just like during pregnancy), drinking at least 64 oz of water a day, and not eating bread or pasta. I’ve been eating rice. I’ve been eating potatoes. I haven’t been working out. And the weight just  disappeared.

Another bonus: I have a ton of energy that I haven’t had in years. It’s amazing to me. I didn’t even expect that it would affect my fatigue… but it has.  There have been days where I didn’t even feel like I have MS. I mean, I went 2 whole weeks without an energy drink, or even 2 cups of coffee.  I don’t think that’s happened in the last 10 years.

But What About BioIdentical Hormones?

The doc at BodyLogicMD also prescribed me some bioidentical hormones to help with MS and seizures.

Based on the studies on estriol that have come out of UCLA, she put me on an estriol cream. It looks like it should be as effective at staving off relapses as Copaxone, at least for the first year.  I start it tomorrow.  I’m hopeful that it will be just as good as a DMD.

I’ve been very lucky not to have any progression since coming off Gilenya in February of 2014 to conceive Henry.  Dr. Javed wants me back on something if we’re not actively trying to conceive, but I have yet to try a disease-modifying drug for MS that isn’t somehow worse than the disease itself — so I’m keen to give Estriol a try, since the second and third trimesters of pregnancy were very much like a vacation from MS.

I’ll be starting a daily progesterone pill on Day 12 of this cycle to help combat catamenial  (read: caused by hormonal fluctuations around menstruation) seizures. When I was pregnant, I went for months at a time without a seizure. It is my most profound hope that I can return to a life where seizures are a “sometimes” thing and not an everyday occurrence.

I’ll be sure to let everyone know how these therapies affect me.

But for now, my honey just got home, and I wanna go give him kisses. ❤

love

*waves*

Hey there.

Life’s been crazy. I have been writing – just not on this blog. I’ve been writing here.

modern-day-ms

Here’s a link to my most recent stuff.

I was actually just featured in an interview on that site yesterday.

Love That Hugabug!

hugabug

Henry is growing like crazy. 10 months old, wearing size “18 month” clothes. He’s babbling all the time, blowing raspberries, and pulling himself up on furniture. He’s so close to walking that I’m trying my best to appreciate how easy it is to keep up with him these days.

I’ve started working on planning his 1st birthday party, which will be a joint party with his Grandpa (my dad), since they share a birthday weekend.  I think I’m actually more excited about my parents, my brother and his awesome wife coming in town to celebrate than I am about the fact that we managed to make it a full year without accidentally killing our beautiful, amazing baby. Being a parent is hard, yo.

I’m a mess, but I’m doing my best.

My health has been frustrating and upsetting, so I’ve been doing my best to minimize the struggle while responsibly handling it.

I believe I had an early miscarriage a couple of months ago. I’m usually very regular, but had a couple of very faint positive pregnancy tests and then didn’t bleed for 50+ days.  When I did get my period, it was the heaviest, most awful period I’ve ever had.  Dr. Dad thinks I might have just missed a period. He said it happens all the time, and not to worry about it. Adam has decided Dad’s right, so I’ve jumped on the “don’t mourn something that never was” bandwagon with my conscious mind and have been dealing with terrible depression and nightmares because of the choice to repress my feelings of guilt and sadness. I see my therapist on Saturday, thankfully.

Of course, just afterwards, I had a MS relapse, complete with tons of seizures, neuropathic pain in my legs, muscle spasms, and tingling/burning on various parts of my back. A medrol dose pack seems to have done the trick to quiet most of it. Come to think of it, it’s been almost 6 years without a drip — so that’s pretty good, I guess.

My stomach is still up to its shenanigans, reminding me after almost every meal that eating is not a good idea… and that’s despite my gastroenterologist doubling the amount of Prilosec I take. I am scheduled for an upper and lower GI scope on St. Patrick’s Day.  (Fun, right?)

After 2 years of not seeing a dentist for a myriad of reasons, I finally went in for a cleaning and exam. I have 2 cavities to get filled this month as well, in 2 separate visits.

I honestly don’t remember the last time that I went to the gym to work out (though I did see a nutritionist), and today, I’m fantasizing about finding a chiropractor because my neck is super-sore from my head dropping thanks to seizures. Unintentional headbanging FTW. Honestly, I’m tired of hurting. Apparently, not tired enough to use my foam roller, but just enough to think about it and then whine to myself you.

cantwin

The bright spot in the health area is that I finally got glasses.  They’re cute and helpful. I had no idea how badly I needed them!  I now look forward to the day when Henry stops wanting to rip them off my face and throw them. I’m sure that will eventually happen someday.

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Anyway, that’s all for now. The little one is stirring, and I need to change and feed him.  Hope you’re having a good day! Be well!

Stardust

So, David Bowie died yesterday… and today we all found out about it. It sucks.  He sparkled — sometimes literally.  Hell, the work he left us to enjoy for the rest of time still sparkles.

It was 4 p.m. before I checked Facebook today, and the first thing that I learned was that David Bowie not only had passed away at the age of 69 (which, let’s be fair, is the age that I think he would have wanted by his name for all time – based entirely on how cheeky it is), but he had managed to release an album saying goodbye to his fans that he put together while battling terminal cancer. He even made one specific music video as a “finale.” Check it out.

If that doesn’t say, “Keep creating art, no matter what,” nothing does.

That’s why I’m writing right now, even though I know I’m not at my best.  These words, and whatever I manage to scratch down on paper or record to video or sound, will one day be all that is left of me for everyone else. All that will be left for Henry.

You don’t have to be terribly creative to leave important parts of yourself behind for others. My Poppy put together several scrapbooks, for example. They’re filled with comics and poetry and articles that meant something to him. I’m lucky enough to have 3. And when I miss him, the contents of those scrapbooks feel like a conversation that I get to have with him through space and time. They, in many ways, remind me of Facebook, and that similarity makes me hope that when I’m gone, Henry will be able to look through the thousands of posts on my timeline when he is missing me and feel like I’m still here for him.

They also make me wish that my other grandparents had kept journals or scrapbooks. And they make me hope that my parents might have the foresight and the time to do so as well.

Today, I had so many time-travel seizures that I honestly don’t remember the day, aside from Adam letting me know that I’d found out about Bowie’s death at least 9 times. Personally, that’s 9 times too many. But, hey, if I’ve got to be shocked and saddened at someone’s demise, at least it’s an artist whose work I have enjoyed since I was a small child.

He didn’t let cancer stop him from being the artist that he was — from giving all of us fans more music and poetry to enjoy for the rest of our lives… so, I’m not going to let MS and seizure disorder stop me from creating either — even if what I’m creating seems completely mundane to me at the time. I have to remember: it’s not mental masturbation; it’s not just for me; and no one else has my point of view. It’s exactly as true for you.

sparkle2

because

stardust