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.
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.