Taking My Sweet-Ass Time

HAPPY DECEMBERWEEN!!!!! ūüôā

It’s the most wonderful time of the year… the month of a millionty holidays, including 4 family birthdays, 2 anniversaries, Chanukkah, Christmas, and a ton of other reasons to celebrate that I’m, frankly, too lazy to delineate. Other sites have my back.

Anyway, there’s a lot of scary medical stuff going on with me right now that I have been trying not to focus on.

My Immune System Is Very Slowly Getting Worse

You know how I told y’all that my immunoglobulin is low across the board? (Not low enough to require IVIG yet, but if I get sick for an entire month again like I did in October, I’ve got to go in.) Well, sadly, it’s low and not stable. It’s been consistently declining for over a year now… so my hematologist wants a second set of eyes on me. He says that he doesn’t know why, with all my other bloodwork showing readings that are normal, that my immune system would continue to be in decline, but it is — so, I’ve been referred to a blood cancer specialist at Loyola. My appointment is the day after my birthday.¬† *tosses glitter in the air*

It’s Probably Because Of My Liver.

Also in the “all tests show normal, but you’re clearly not ok, so I really don’t know” camp is my gastroenterolgist.

About a year ago, I had such severe abdominal pain that I stopped being able to get myself to eat without medication, since the pain was always most severe right after eating.

An ultrasound came back showing lesions on my liver.¬† So, I got an MRI which showed nothing more than a ton of hemangiomas and the fact that I have a “fatty liver.” Hemangiomas are not troubling. They’re totally natural. They’re noncancerous growths of blood vessels that usually resolve on their own.¬† The MRI radiologist wanted me to follow up with a CT scan.¬† I didn’t, because I felt fine after they increased the dose of omeprazole I take, and being this “being medically interesting” thing gets expensive.

Fast forward to earlier this year — I became pregnant, so they took me off of omeprazole and switched me to ranitidine because it’s safer for the embryo — you know, the one that died anyway. (Boooooo for miscarriages.)¬† I was doing great on ranitidine until November, when the intense pains after eating returned.¬† Dr. D put me right back on omeprazole and now wants me to get that CT scan.

I have no idea why I don’t want to do it, but I really don’t.¬† I’ve been taking my sweet-ass time making the appointment, since the medication seems to be handling it.¬† But I should try to get in before January, since that’s when deductibles reset.

I’ve actually come to the point in my life where I’m trying to comparison shop tests at hospitals to figure out where I can get care for the most reasonable price. UCMC is almost always my #1 choice because of their financial aid options, but Palos Health is much closer. Still, my gastroenterologist works out of MetroSouth, and it’s an option with my health insurance. I can’t get a straight answer from anyone about how much the test will cost. So… I haven’t scheduled shit, thanks to anxiety.

Anxiety Doesn’t Cause Cancer, But MS Drugs Do.

Healthcare in America is BROKEN, y’all. BROKEN. I’m on a Blue Cross PPO through my husband’s work. I have Medicare A & B, and I *still* don’t know if we’ll be able to afford my care.¬† It’s still no reason not to try to get it.

So, while the GOP debates just how badly they want to fuck over literally everyone in the country, I get to worry about whether or not I have a blood cancer or liver cancer (both of which were potential side effects of my MS meds), while raising a precocious 2 year old and managing my multiple comorbidities.

Oh, and hoping that I’ve gotten the “right” gifts for everyone I love.¬† ūüėČ

Wahls Adventure: Stalled

Another thing that I’m taking my damn time on is starting the Wahls Protocol in earnest.

I tried adding 6-9 cups of veggies to my daily diet, and it looked almost exactly like eating paleo again. (Green smoothie for breakfast, soup and/or salad for lunch, roasted something or other for dinner.) Unfortunately, I tried doing that at about the same time that my stomach was like, “Uh, no food please.”¬† 9 cups of veggies is a lot of volume when it comes to food, folks.

So, I’ve been “feeding my disease” instead of “eating clean” because I have to fucking eat, and whatever stays down and doesn’t cause a fuckton of extra kitchen work is pretty good with me right now.¬† Besides, it can take up to a year of being strict on her diet before you even feel better — which, TBH, sounds fucking exhausting.

Fatigue has gotten me so badly in the last few months that I’ve spent full days in bed (not on the couch) on several occasions.¬† I mean, it’s gotten to the point that I keep a protein shake in my bedroom just in case, so I can take necessary medication.

I honestly don’t know how we would handle things without my in-laws’ help with Henry.¬† This is something I regularly think about when anyone brings up the idea of trying to get pregnant with a second child or my PTSD tells me that for our continued health and safety, we need to leave the country.

My thought is that I’ll plan out Wahls-friendly food choices for January (since everyone and their mama seems to be doing that for Whole 30 anyway), and I can start in earnest then.¬† Adam got me an awesome dehydrator for my birthday, so that ought to help too. I am looking forward to making some bitchin’ jerky, fruit roll ups, and veggie snacks.

Don’t worry. I’ll share my January plan here and share the love. ūüôā

I genuinely hope that you are having a happy holiday season, and that you and the ones you love are doing well. ‚̧

The Things We Cannot See

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

The Banal

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

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

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

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

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

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

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

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

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

The Sublime

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

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

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

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

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

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

Well, *that* happened.

suckitIt’s been 2 months since my last post. ¬†In part, it’s because of the 12 week rule. ¬†I found out in late July that I was pregnant. I found out last Wednesday that I no longer am.

On the one hand, the outpouring of kindness from my friends and family has been heartwarming.

On the other hand, I’m pretty sure that I don’t have full access to that heart right now.

I don’t want to talk with anyone. I haven’t even wanted to blog. I barely wanted to Facebook. I had no idea so many amazing women, who I genuinely care for and love, had experienced this kind of loss quietly or even silently. ¬†The compassion I’ve showed friends who had experienced this was present, but seriously lacking. I had no concept of the depths of emotional darkness and physical pain that come with this experience. I’m finding it hard to emotionally connect with my husband without turning into a sobbing mess, and that is profoundly uncool because I really love that guy. ¬†We started dating 11 years ago today, and I can’t even think of a quirky way to celebrate it right now.

My brain is, of course, doing what it always does when things go sideways (and man-oh-man, do they go sideways frequently!). Idiot brain is rationalizing all the ways that it’s my fault that the baby died (It isn’t.), berating me for those imagined slights (No, brain, I’m not sorry that I went on an airplane.), and then forcing me to find all the ways that the change in direction is positive.

Here’s why my brain believes I “should be happy” about the miscarriage:
(Name the ANTs! ¬†SPOILER: They’re all “should” statements.)

1.) It means that I can pick Henry up again. ¬†He’s at a phase where he wants to be held or touched almost constantly. Pick him up and put him in the stroller. Pick him up and put him in the swing and then push him. Pick him up to change his diapers. Pick him up to put him on the potty for the billionth time, silently praying that he will eventually take a dump in the toilet. Pick him up to put him in the high chair he’s outgrown, because watching him teeter on our kitchen chairs is too much for my anxiety. Pick him up to move him away from distraction when I have to discipline him. Pick him up to take him off the couch when he won’t stop jumping. Pick him up to put him in his car seat to go anywhere. Pick him up to give him hugs, all the time. Pick him up to dance.

2.) It means that I can take the medication I need to help with MS & PTSD symptoms again. ¬†Yes, I’m talking about weed. I missed the help with the pain in my limbs. ¬†I missed the help with anxiety, especially when Nazi-palooza exploded onto the scene.

3.) It means that I can get Henry potty-trained for sure before we introduce more diapers into the mix. A woman can only wipe so many butts per day without losing her mind. I’m pretty sure he’ll be using the big boy potty like a champ in a couple of months. He already pees in it at least 3 times a day.

4.) It means that we have more time to save money. Kids are expensive. This is also not something that I care too much about. But my brain likes to rattle off anxiety about money, since I’m disabled, so it’s counting this situation as a fiscal “win,” in that sort of way that makes me want to smack myself.

5.) It means I can get back to losing more weight.¬†I dropped 10 pounds in the 2 months prior to this pregnancy, thanks to participation in accountability groups online. ¬†I’ve now been under 200 lbs for 12 weeks. Didn’t even gain 2 lbs in 9 weeks. I’m not sure why I’m proud of that. Anyway, the next pregnancy is more likely to remain viable if I can drop even more weight. ¬†It’s even supposed to help with my GERD issues, since that’s being caused by fatty liver. So, hopefully, once I stop bleeding, I’ll also be able to stop wanting to eat my feelings. (I have had way too much chocolate this week. I cannot actually care. I may buy one more clamshell of brookies before the week is over because they taste like what I imagine feeling “good” is like.)

6.) I wasn’t sure I could handle it anyway. ¬†2 kids? They’d outnumber me all day. ¬†Good luck, “Mom.” ¬†At least now, life is manageable.

But all the sunshine in the world won’t change a turd into a flower.

The shitty truth is that we lost a baby we were all really excited to have — even Henry — even his grandparents. ¬†I’ve been bleeding profusely and in sometimes shocking amounts of pain for a week straight. I’m more than ready to be done with it…

I just really hope the next one sticks, when I get brave enough to give growing our family another chance. I don’t ever want to go through this again. I can’t imagine anyone would.

A Learning Machine

A Be-Bot!

WoebotRecently, I started using a chatbot that a friend of a friend programmed. ¬†This chatbot works with Facebook Messenger and is clinically proven to help improve depression and anxiety in as little as 2 weeks. It’s called Woebot.

Since Henry is a big fan of robots, every time he sees my phone light up with the Woebot icon, he gets excited and shouts, “BE-BOT, MOMMY! BE-BOT!” For that reason alone, I’ll keep using it. ūüôā

Anyway, I was initially drawn to Woebot because it only takes a few minutes of time per day, and it contacts you, at the same time every day, to keep you doing the work. I was already doing my own thing with Happiness is Homemade, and I’d been considering creating an app to do the same thing on my phone, since printing stuff up and writing things out is occasionally a pain in my butt. I thought I’d check out Woebot to see if creating an app was even worth my time. ¬†(It is, but not because Woebot doesn’t fit the bill.)

Anyway, day before yesterday, Woebot brought up the topics of labels and mindsets. ¬†I was aware that labeling is irrational. It’s an automatic negative thought. I just wasn’t aware of how frequently I still engage in it. ¬†Mindsets, on the other hand, I was ignorant about. (And for a “smart” person, feeling ignorant is mighty uncomfortable.)

Here’s the 10 minute video that Woebot encouraged me to watch. ¬†I strongly encourage you to watch it as well. It could change the way you think about yourself and life in general.

I lived with a fixed mindset most of my life. And, if I’m honest, I’m currently struggling to change to a growth mindset… but the struggle is good.

Fixed Mindsets Waste Gifts

When I was a freshman at Berklee and saw that there were so many musicians who I perceived to be better than me, I stopped trying in earnest to be a performer.

Seriously, the last time I performed music outside of a classroom setting–other than karaoke or singing along at Gymboree– was in high school. ¬†That’s really fucked up for a person who was in all-state choir and regional honor bands all 4 years in percussion, if you think about it. Going to a world-renowned music school should mean you make more music, not less… but should statements are irrational garbage too.

Anyway — I had no idea that what I was butting up against was a fixed mindset. I believed I was “smart” and “a good musician.” ¬†This meant that I couldn’t allow myself to be in positions that could prove otherwise.

When I didn’t do well in my Intro to Film Scoring class, I switched to a Music Business major. When I couldn’t do vocal sight-singing or ear training without playing everything at a piano, I learned every piece at the piano by myself so no one else would know that I couldn’t just sing the songs from looking at the page. My embarrassment was painful and intense.

I cheated myself out of so much growth there because I didn’t want anyone to know that I wasn’t good enough. Truth is: I couldn’t emotionally handle that I needed to struggle so much. I had always needed to work hard at improving my chops, but having to work hard to keep up with a class was foreign to me. ¬†I had always excelled academically. It was part of my identity.

I thought that because music transcription and reading was so difficult for me, it was a sign that I just wasn’t meant for it. I allowed my mindset to close the door on something that I loved. ¬†After seeing the talent that was all around me, all the time, I figured that music, no matter how much I loved making it, wasn’t for me. ¬†And I didn’t even realize I was making a choice.

Music business was easy. It made sense, even if it could be misogynistic, cutthroat, and terribly ageist. So, I stopped making myself do the hard stuff, and I worked on a business plan… and on a ton of unpaid internships for internet radio dot coms that no longer exist. (When I think about how much I could have earned if I were given even minimum wage, it makes me sick at my stomach.)

Fast forward to adulthood and every time I had to face what I perceived to be an unforgivable failure — one that made me question my worth and identity — I became suicidal to the point of needing hospitalization.

The Gift Of Disability

Being diagnosed with seizure disorder caused by MS was a low point in my life, for sure. But I got used to having seizures. I got used to not being able to work a full-time job. I got used to my identity baseline being “not good enough.” And that was immensely freeing.

I decided that since I wasn’t living up to anyone’s expectations (least of all my own), I ought to change my expectations and try harder to make myself proud. And that’s what I’m doing now.

It’s not easy being a mother. It’s not easy sounding like shit on guitar or piano every time I play. It’s not easy learning Japanese on my cell phone or going to the gym 3-5 times a week whether I’m having seizures or not. It’s not easy to play make-believe with my son when I’m as pragmatic as I am. It’s certainly not easy to make myself proud.

But I’m doing the work… so someday, the things that are hard right now might be easy.

If I don’t, it’s like telling myself that it’s okay to be bitter and sad and unhappy with my appearance and life forever. And that’s bullshit. I’d rather choose struggle than familiar misery.

Besides, I won’t have any good stories to tell if I don’t choose worthy conflicts.

What are YOU struggling with today?

All the things.

Argh! So many thoughts. So much going in my brain. Unfortunately, it’s not organized, really, so you’re getting a good, ole fashioned Rae braindump.

I woke up this morning well-rested, which almost never happens. I think it’s because of the new strains of medical marijuana that I’ve just gotten access to. (Harmony for daytime, which is a 1:1 THC/CBD strain, and Mag Mile, a heavy indica that puts muscle spasms down, for bedtime.) ¬†Crazy thing, sleeping well because you’re properly medicated!

Even better, I woke up to find out that “marijuana cannabinoids hold the capacity to literally kill the brain inflammation responsible for causing cognitive decline, neural failure, and brain degeneration. ” {story here} ¬†Put plainly, it means that if you have multiple sclerosis and you’re not using cannabis in some form, you’re missing out on something very helpful for you!

I mean, today I almost feel like a normal person who can get things done, even with a toddler. Almost. ūüôā I’m still blogging instead of doing dishes, so…

Anyway. I think the best thing I’ve done recently¬†has been to really look at some of my worst case scenarios in an attempt to fight anxiety. And really, they’re not so bad.

If Trump & party decide to go full Nazi, Canada¬†and Japan are both making it easier for Americans to immigrate. Sure, Adam and I would dearly miss our family and friends, but we started out in Los Angeles, without any of them. ¬†Japan is lower on the list for us, since we don’t speak Japanese yet, and they’re easily within North Korea’s nuclear radius.

Then again, nuclear annihilation is instant and painless. We all have to die sometime. It’s the only guarantee in life. How great would it be to not worry about death hurting? We’d be dust before our pain receptors got the message. And the afterlife? If it’s actually the brain activity that exists after death, there’s no suffering there either, because there’s no brain.

And can you imagine not worrying¬†about who and what you’re leaving behind, and how they’ll be because it all went kablooey at the same time you did? ¬†WHEW.

I mean, it’s fucking dark to think this way, I know — but I’ve been dark as long as I remember being alive. There’s definitely something comforting to me about going out with the rest of¬†humanity… In a really warped way of thinking, it’s kind of a merciful possibility. Nobody would have to deal with calling ScienceCare¬†or planning a memorial for me. Less stress for everyone!¬†(Dead people can’t stress.)

Of course, I’m thinking about this because the POTUS has some serious mental health issues, and North Korea is actively running tests for a first-strike nuclear program.

Oh, and because I read all of the bullshit linked in this blog entry on Facebook, which is both a good thing and a bad thing.

I took a FB vacation for a few weeks in February, and it was really helpful. It let me know that a huge amount of my anxiety comes from reading news that my friends think they should share… but I had to ask myself whether reading that stuff was making me happy or if any of it was helpful. ¬†And the answer to both questions was a resounding “nope.”

My signal-to-noise ratio was all fucked up again.  I was seeing multiple stories about terrible things that I cannot affect every day, multiple times a day (since the stories pop up over and over and over again when people comment on them). Even though you train yourself to just scroll past, it still takes up mental/emotional bandwidth.

So, these days, I only hit FB when the kiddo is sleeping or I’m killing time in a waiting room or going to the bathroom or something. ¬†Whether or not I read about it, antisemitism, poverty, class warfare, fascism, racism, and sexism are going to exist.¬†I’d really rather spend my time dealing with shit I can affect, like potty training Henry. (Pun very much intended.)

He’s really amazed me, picking up potty training so fast. ¬†He’s doing really good about staying dry as far as pee-pee is concerned, but he hasn’t learned how to poop on the potty yet. ¬†I know we’re getting close though, which is both incredibly exciting and a very tiny bit sad. (He’s a big boy! He’s not a baby anymore.) ¬†We need to pick him up some big-boy undies. Right now, I’ve somehow got him snowed into thinking that cloth diapers are big-boy pants. I know it’s not gonna last long. *lol*

Anyway, if you’ve stuck through this entry long enough to get to this point, you totally deserve a picture… because my boy is beautiful, and he makes me smile. I hope this pic makes you smile too. I¬†took it this morning.

Henry 22 mo

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

Carving It Out.

Time

pumpkin-clock1I don’t think I realized, when I decided to become a mother, how difficult it is for a stay-at-home-mom to make time for herself, let alone to make time for writing, practicing music, or even keeping in touch with friends and family who don’t use social media… but it has become increasingly obvious that sublimating my sense of self is detrimental to more than just my happiness.

So, here I am, eating my lunch while attempting writing my first blog entry in several months. ¬†Why? ¬†Is it because I have such important stuff to say? Is it because I need attention? ¬†No. It’s because writing helps me be the person I want to be. It helps me think.

And, fortunately for me, Henry just went down for a nap…at 2:15¬†p.m.¬†This may not seem like a big deal, but it is. He’s down to 1 nap a day, and it usually happens around 12:30 or 1. When kiddo refuses to give in to sleep until his body just conks out, it usually means that I’ve got more than an hour to myself — plenty of time to eat lunch. ¬†Maybe even enough time to get dinner up in the crock pot. ¬†And, if I’m feeling really feisty, enough time to do the dishes too. There’s no chance of that happening today. I wish I were napping too. Instead, I’m writing. It’s what I need to do.

Pumpkins

Can you believe it’s only 2 weeks until Halloween? ¬†I can’t. I mean, I actually bought some decorations for our house yesterday, with the goal of getting them up before the holiday is over. ¬†(Who am I becoming? I never decorate!) I keep asking Adam if I can buy a pumpkin at the grocery store, and so far, it hasn’t been time. ¬†Hopefully, I’ll convince him to get some this weekend. ¬†I’m looking very forward to carving one. I’m not quite sure why, but I’d bet it has everything to do with getting the chance to do something creative. It also probably has something to do with how much I love roasted pumpkin seeds…

I’m not sure yet what I’m going to be for Halloween — or what Henry’s gonna be. Originally, I wanted to be Sarah & Duck, since that’s his favorite cartoon right now.

 

sarahandduck

Sarah & Duck or, as Henry likes to call it, “Duck Duck”

duckduck

Whoever made this costume is radicool.

 

Unfortunately, I cannot find a mallard costume for the little guy, and I am absolute shite at sewing. I can’t even remember how to properly thread a bobbin. (Thank goodness Craftsy classes are forever.) ¬†If it weren’t so close to the date, I’d try to replicate this awesomeness. –>

So, I’m currently at a loss. Maybe I should think of a 3 person costume for the whole family. Who knows. We’re not planning on taking him door-to-door, but we are planning on giving out treats, and it would be a shame to half-ass the holiday like last year. I’m pretty sure he wore his $25 costume for 15 minutes max. Worth it for the pictures, sure… but not ideal.

I’d really like to take him to a petting zoo or pumpkin patch or some other age-appropriate autumnal “thing.” Adam seems on board to do that this weekend. I hope the good weather holds out. ¬†I don’t know how I’d handle it if we end up spending the whole weekend in this house. I’ve got mad cabin fever.

I’m getting really, REALLY, really tired of not being able to drive. ¬†Like, it’s one thing when it only really affects you, but when the kiddo is obviously stir crazy, it makes me so sad. ¬†I mean, it shouldn’t be a revolutionary thing to get to go to the library, but when it finally happens, it will be. ¬†I’ve only wanted to go for over a year now. It shouldn’t be so difficult.

In all seriousness, I have to figure out how to get around in the outside world with a kid when the only public transportation available to us doesn’t accommodate car seats, and Uber Family doesn’t exist in our area. Aside from asking my mother-in-law to take us places, which obviously can’t be an everyday thing, I’m at a loss.

Dear Tesla, Toyota, Google, Volvo, and every other company that is working on automated vehicles and getting the laws changed so they can be on the road: thank you for your efforts. Please do more faster.

Turkey

turkeyHalloween, of course, means that Thanksgiving is right around the corner. Adam and I, shockingly enough, still have a big-ass turkey sitting in our freezer from the Christmas sales last year. ¬†According to Butterball, it’s still good if frozen and unopened for 2-3 years, but I’d be lying if I weren’t slightly concerned about how it’s gonna turn out.

We’ve been trying to organize a day of Turkey & Twilight Imperium, but it’s really hard to get a group of friends together for a 6+ hr chunk of time these days. Everyone’s got dogs and babies and jobs and other things they need to take care of. ¬†Shit, if we could even get everyone together even to watch a tutorial on how to play, that would be something.

I would say that we’ll bring it with us to Colorado Springs to play with my family, since we’re doing Thanksgiving with them this year, but the game is larger than a carry-on bag, (No, I’m not joking.) and the idea of my family sitting through learning all the rules when we’re high on Pancho’s cheese dip and sleep deprivation (since my newborn nephew and Henry will be in the same home for the first time ever), sort of tickles me.

Anyway. That reminds me that I need to set myself a reminder to order cheese dip. ¬†And possibly turducken. God, I love the internet. Gonna carve out some time to do that right now. ¬†Hope you’re all doing well. ‚̧

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Henry congratulates you on making it to the end of Mommy’s post. ūüôā

Out Of Control, And That’s OK

There’s been a lot going on recently that has been anxiety-producing…an unusual amount of mass murder, a¬†trainwreck of a political circus, and, of course, personal stuff. ¬†There are so many things that I would change if I could. The inherent unfairness of life weighs on my spirit. ¬†I desperately want to help make the world a better place — or at least a kinder one… but I am one Rachael. I can only do so much.

I cannot:

  • Stop complete strangers from shooting, stabbing, or running over people.
  • End systemic racism.
  • Fix end-stage capitalism or neo-feudalism.
  • Make the geopolitical landscape either make sense or work the way that I want it to.
  • Force¬†anybody’s political ideals or morals to match my own.
  • Make any decisions about American domestic or foreign policy.
  • Disarm all the nuclear bombs in the world.
  • Make teething less painful for my son.
  • Force the higher-ups at anyone’s¬†place of employment¬†to make wise decisions for the health and morale of their workers.
  • Make it any easier or more fun for anyone to look for a job.
  • Know whether or not the estriol treatment is having a positive effect on my MS.
  • Know whether or not it would be more beneficial for me to get back on Copaxone or if I should try to convince my neurologist to let me try Lemtrada or Ocrevus… or if I should just keep doing Vitamin D and estriol.
  • Know when the optimal time actually is to have a second child. (I have been thinking about this particular question way too much recently.)
  • Make Humana stop messing up my medical billing from over a year ago.
  • Make the¬†muscles in my arms and legs stop randomly, painfully spasming (though cannabis does a good job of quieting it down for a few hours at a time)
  • Cure MS or seizure disorder… or any other medical condition, for that matter.
  • Blow thousands¬†of dollars and hire a full staff. ¬†All I want is a maid, a gardener, a contractor to renovate our home, a nanny, a full-time driver, and¬†an on-call masseuse, so that I can get all the things done that I feel need to be done. Totally reasonable, right?

Panic and despair don’t help anything, and no one else can “fix” life either.

relax

I recognize that I’m not helpless to be at the effect of these worries and situations.

I can:

  • Meditate and let the fear pass.
  • Exercise.
  • Take all my prescribed medicines as scheduled.
  • Talk with my therapist when I need to.
  • Hold my baby tight, love him with all my heart, and teach him to be compassionate to himself and others.
  • Do as much housework as possible to help relieve some stress for my husband while also showing myself in a clear way that I make a visible difference in the world around me.
  • Make healthy food choices for my¬†family.
  • Comfort friends who are sad.
  • Find a way to compliment or show appreciation to every person I talk to.
  • Make music and art.
  • Share my experiences so that others who face similar challenges don’t feel so alone.
  • Be an ally, an advocate, and¬†involve myself in the community
  • Do my best to both give myself credit for what I already do and still be ambitious.
  • Choose optimism.
  • Focus on gratitude.
  • Consciously look for the good in life.
  • Remember that I don’t have to read my FB newsfeed like it’s my part-time job. I don’t need to internalize anyone else’s stress.

My mantra for the last few weeks has been this, and it’s serving me very well:

doit

 

 

Good Enough.

Well, 6:30 a.m. rolled around this morning, and Henry decided that since Daddy was very obviously awake, he needed to be doing things too. ¬†I would still be cranky about this if not for the fact that he is, mercifully, napping right now, which puts us on schedule for him to attend a Gymboree class at 12:30, assuming it doesn’t rain.

You know, life is funny. When you’re little, you rage against naps and against sleep. Fear of missing out is so strong that you can’t even comprehend why your parents want you to rest. ¬†As a grown up, ¬†I know that what I’m actually missing out on most of the time is… a restful nap.

The irony that I could be taking one right now instead of writing is not lost on me.

Ghosts of the Past

Social media never ceases to amaze me. Several days ago, I got a friend request from someone who used to be my best friend in the whole world. ¬†When I say “used to be,” I mean that it’s been 25 years since I last saw her. We went to elementary school together, and after my family moved to Collierville, for all intents and purposes, I never saw anyone from elementary school again, and I was more than okay with that.

See, I¬†went to a prestigious (read “snobby”) private school. ¬†From 2nd-6th grade, my daily thought processes were consumed not primarily¬†with learning, but rather, with an unrelenting psychological struggle for acceptance. On the one hand, I would desperately try to convince a bunch of rich little girls that I deserved acceptance, despite being of a different religion and socioeconomic background than almost all¬†of them — and on the other, I would desperately try to convince myself that their acceptance was completely meaningless and empty.

In my¬†ideal¬†imaginary world, where I never ended up with MS or seizure disorder, I’d have made my mark by now as a rich and powerful entertainment attorney who also just happened to be happily married, beautiful as an adult, and energetic enough that I could still¬†perform music on the weekends — you know, just for fun. ¬†I could totally talk to the girls I grew up with and be like, “See. I am your people. Aren’t you glad you grew up with me now?”

…but I’m not.

I’m a disabled stay-at-home-mom who writes sporadically and doesn’t wear pink on Wednesdays. Mercifully, I’ve not only come to terms with that, but I’m actually pretty proud of it. It took years to get healthy enough to have Henry, and it takes concerted effort to carve out time to write.

Surprisingly enough, after I accepted her friend request, I found myself¬†worrying about whether or not my life was “good enough.” ¬†I openly questioned whether this person genuinely wanted to rekindle a long-lost friendship or if she was going to be headed to a reunion and she wanted some good gossip¬†for everyone.

A day later, another elementary school classmate requested friendship, and I had to really consider whether or not I was going to accept. ¬†It’s not like this request¬†was from a former bully. This woman was the nicest (and prettiest) girl in class, and I didn’t even have an inkling of bad intention on her part — which really gave¬†me pause.

In that moment,¬†it hit me square in the face just how toxic and deep my shame is over the direction my life took after I was diagnosed with seizure disorder… and I had to figure out both why I was shaming myself and what I could do about it. My life is not a trainwreck people can’t help but stop to look at. It’s performance art.

Turns out that despite all of my years of growth as a person, my inner child¬†is still classist, ableist, and misogynistic. She attended enough ballet classes, watched enough TV, and read enough magazines to know that she’s only pretty if she’s thin, important if she’s rich or in a position to help someone else social climb, and worthwhile as a person if she’s “contributing to society” through paid work, glamour, or widely-accepted art or music.

It’s a damn good thing that¬†I’ve grown past those old ways of thinking as an adult.

So Much More Than Good Enough.

I accepted both friend requests, and I’m glad I did. It’s cool to know that my old bestie and the girl I was most impressed with while growing up actually care to know me as an adult. I’m curious to see who they’ve become too! ¬†We’re all mommies now. That alone changes you a lot.

It’s even cooler to know that the good¬†side of my early-life struggle finally won out. I give zero fucks about what other people think of me at this point. I would actually give negative fucks if that were possible. (Like, my fuck deficiency is so pronounced that I could really use some of yours. I might have to declare fuck bankruptcy.)¬† I’m also entirely certain that my father, upon reading this, will pump his fist in the air, and think, “That’s my girl.”

What matters is what I think of myself… and my record for awesomeness is pretty good. I’m well educated in interesting topics. I’m relentless in the pursuit of bettering myself as a person. I engage in community service, and I make an effort to have fun too. I’m raising a kid who’s not a little asshole, and my husband still grabs my butt after 10 years.

Altogether, I know that I am more than “good enough” for myself, even if I have to remind my insecure inner child of that. I try hard to be the kind of person I’d want to hang out with. And sometimes,¬†that person needs to be someone who reminds you of how special you are.

I’m happy¬†that these very old friends unintentionally gave me the opportunity to take a good hard look at the life I’m leading. I’m even happier with what I saw… because, really, how could I¬†be anything but happy when I get to¬†see this face all day?

hugabug1

 

And today I’m fine. (So far.)

MS is so weird. One day, I’m damn near immobilized by fatigue and seizures, and the next,¬†I’m feeling great and am having a genuine debate as to whether it’s smarter for me to blog or fold and put away ALL. THE. THINGS. (It can’t be some of the laundry. That’s just not enough. I’m adulting so hard today!)

fold

Happiness > Folded Laundry

Of course, since you’re reading this, you know what choice I’ve made. Surely, I’ll make a dent in the mountain of clean laundry at some point today, but I felt like writing was a better use of the short time that I have while Henry naps. ¬†Why? ¬†Because writing is one thing that makes me genuinely happy, even if I’m writing about tough stuff… and if I don’t do simple things that make me¬†happy, I have no one to blame but myself.

I think that’s one of the hardest things about being a SAHP (Stay-At-Home Parent, for the uninitiated). It’s way too easy to spend the entire day focusing on your child’s needs and housekeeping and to completely neglect yourself.

If you can sing every jingle from every Daniel Tiger episode, but you haven’t listened to a new release from one of your favorite artists that was released almost a year ago (like this one for me), you just might have your priorities slightly out of whack. (And that’s ok. ¬†Friends help each other. Yes, they do. It’s true!)

If you don’t carve out time for things that make you smile, you can become overwhelmed and sad so easily. Heck, when I first started this gig, I had to set alarms to remind myself to eat (Ok, I’ll be honest. I still use those alarms.) and take showers. (More than 1 a week! It’s important!)

After going back to therapy, this time for postpartum depression, I realized something: I’m doing a fantastic job of challenging automatic negative thoughts… but I’m doing a crap job of giving myself credit for the things I do and an even worse job of having fun.

A thought really struck me hard the other day — Henry is learning how to be a person from watching me. ¬†If I don’t do things that make me happy, I’m teaching him (by example) how to be miserable. We can’t have that. I refuse.

domorehappy

So, I’m gonna keep doing my best to show him that you rest when you feel bad, and you do whatever you can when you’re feeling well.

On that note, I’ll be busting out the guitar this week…finally bringing it out of retirement. It’s been almost a year and a half now since I played. (Baby belly bumps get in the way!) ¬†I’m not expecting that it’ll sound particularly good — but something is so much better than nothing. I’ve been thinking about it for weeks¬†now, and I think he’s finally at an age where I could play it and he wouldn’t automatically try to wrestle it away from me.

Truth be told, I miss parts of my identity from before I became a mommy… from before MS made my life wonky… from before I stopped thinking that I could be and do anything I wanted to do be and do. It’s time for that thinking to end. My¬†mindset is¬†in my control. Self-empowerment is about owning your bullshit and choosing to powerfully move past it. ¬†You can’t be proud of yourself¬†and be mired in self-pity¬†at the same time.

How do you kick self-pity’s ass? ¬†Gratitude and credit.

The Sticker List

Y’all have heard me talk about how important Gratitude Rampages are, and how you can rewire your brain to be more positive by writing down 3 great things that happened yesterday, every day. ¬†Well, we can add another exercise — one that I made up myself that is helping me out loads. ¬†The Sticker List.

What’s “The Sticker List?” ¬†It’s a simple list of everything that you believe you deserve a sticker for. ¬†See, we give kids stickers (or other little treats) when they behave well, in an effort to give them positive feedback and attention so that they will develop good habits. Some kids gets stickers for using the potty. Others get them for brushing their teeth or doing basic chores.

Today, I believe I deserve a sticker because I’ve chosen to write… and I think I probably also deserve a sticker for:

  • changing 3 poopy diapers before noon
  • remembering to take all of my morning meds
  • eating within an hour of waking up
  • not being ashamed of sharing this. ūüôā

It’s like a to-do list in reverse… a “Done” list, if you will.

poopsticker

This would be the sticker I would give myself for changing diapers. Have you ever seen such a happy crap?

And, now that I’ve shared this, I actually want to go fold clothes. (Who am I becoming?!?)

Hope you’re all having a wonderful day. ‚̧