Monthly Archives: June 2016

And today I’m fine. (So far.)

Posted in Just Life., Uncategorized by

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. 🙂

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. ❤

 

Too many thoughts not to blog.

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

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