"She is delightfully chaotic; A beautiful mess. Loving her is a splendid adventure."
"She is delightfully chaotic; A beautiful mess. Loving her is a splendid adventure."
Yesterday, we took my mom with us out to lunch and to see a Christmas musical called “Home for the Holidays”. It was really great to be out with her. As I struggle to find the Christmas spirit, she’s one of those people who just sort of carries it with her all of the time. I was hoping a little of her cheeriness would rub off on me.
When we got home, I went upstairs to lie down with a heating pad. The day took an enormous amount of energy and I was paying for it.
Often times, I have my laptop to read or watch something to distract me from the pain and fatigue. My body is exhausted but I can’t sleep.
Finn came in and wanted something, a video game on his iPod or something. I said no.
He became furious and said “Sometimes I don’t think you’re tired. I think you’re just lazy.”
I was stunned.
He left the room and I started to cry.
My one fear.
The main one, actually. The fear I carry around with me all day everyday, that people think I am faking or lazy, just came out of the mouth of my child.
I collected myself and called him back in the room.
I told him he hurt my feelings. He said he didn’t mean it. That he was angry.
I tried to explain more but 9 year old boys are impatient and he was so upset that he made me cry that I could tell he just wanted to flee the situation.
So I let him.
But what he said stayed with me. And probably always will.
I sort of cringe even reading the words “self love”. I feel like it’s every where. (a sign perhaps?) It just sounds so cheesy and often I think to myself, I don’t need to read about that. I practice self love.
And I do love myself. I really do! I love being me.
But lately, (is it turning 40?) a rude renter is taking up space in my brain preventing me from being good to myself. I’m not used to this voice and frankly, have been too tired to fight her. I purposely choose a female pronoun. This bitch is a Heather. She tells me I’m weak and lazy because I’m sick, that I’m not smart, attractive, talented, strong or worthy.
I’m cringing even reading that.
It’s not me.
I’m all those things. And a hell of a lot more.
But when the tape in your head plays negative nelly on a never ending loop, you just start to nod and say yeah, you’re right. I’ve been brainwashed.
I knew shit had to change when I would say something and Peter would look at me like we’d never met before.
“This isn’t you” he finally said.
Onward and upward, MFs.
Peter’s on my laptop a lot doing various things, or I should probably say UNdoing various things that I have unknowingly done, to make my computer run better.
One day recently he said “What is this file on your desktop?”
“What file?” I say.
He points to it and says “I always forget to ask you about it.”
It’s a JPG with the name “masterbat…”
I immediately start laughing and have been laughing every time I think of it.
This is the file, which is a picture.
MASTER BATH. (I enjoy the tiling, floor, rug, and glass door)
But the “H” was cut off.
MASTERBAT(the invisible “e” is from your dirty imagination)
I think he was expecting something a little more titillating.
Feeling awful around these parts. Like, crying awful. It’s the fibromyalgia flaring, perhaps mad after surgery. (Oh yeah, recently diagnosed with Fibromyalgia. And the surgery was for a hernia. Jealous? Woo fucking hoo.)
Here’s a good place to start if you don’t know much about Fibromyalgia.
My skin radiates pain. I ache as if I walked up 54 flights of stairs while carrying a dresser on my back, looking up the entire time. It’s akin to the ache of a really hard work out on top of having the flu. I try so hard to explain it…I hope that helps. It’s different than lupus, but shares a lot of the same symptoms.
Tears streamed down my face this morning as I put Hadley’s lunch in her backpack and said “HAVE A GREAT DAY!” in my best fun voice, with my back turned to her. Finn thought the tears were because of him, because he was being a little shit this morning, so he apologized again, genuinely. (side note: He lost his screen privileges for the day – WHY does that happen on days when I REALLY need him to be occupied by a screen?)
I exhaled deeply after they left, ate cereal and took all of my meds like a good little patient.
The housekeepers were on their way over so I took pain meds, grabbed my sweetest Ollie dog, and shuffled into the guest room so they could clean the rest of the house and here I remain. Housekeepers are the biggest luxury I have in my life and I am grateful every single time they come. It is a medicine of sorts. It calms me to have a clean house plus I don’t have the energy to do it. If you know someone with a chronic illness or someone who is sick or has had surgery, a baby, what have you, send someone to clean their house. It’s the ultimate.
In happier news, it’s almost summer y’all. I am not as anxious as I have been years past. Maybe that is because it’s still 2 weeks away but perhaps it’s because I feel prepared. Finn’s doing a parkour camp, lacrosse, skateboarding, and rock band camp. Hadley is doing rock band camp as well, but has deemed all other camps “stupid.” Hm. I think I’m more relaxed because they are older, so I don’t have to be as involved. Finn will be 9 in July and HJ is 11. Good independent ages. (Although, talk to me 2 weeks into summer when I start drinking at 3 because they’re making me crazy.)
I took the kids to Old Navy a few days ago to get a few summer necessities and I told them that they may each pick out two things. I knew Hadley would have no problem (two maxi dresses) but I was interested to see what Finny would pick out since he doesn’t usually shop with me. Both Peter and Finn don’t care what they wear as long as its comfy so I usually just buy stuff for them.
He chose a straw fedora (? – so cute) and a pair of slip on addidas like flip flops. He wanted them, but he was torn because all of the other kids wear between the toe flip flops and he didn’t want to be different. I leaned down and said “Who Cares? Uncle Vince doesn’t wear between the toe flip flops either because he doesn’t like them and he’s the coolest.”
Finn’s face relaxed and he smiled. That was all it took. “Oh! Ok, good. Then I’ll get these.”
While they were perusing, I collapsed on a bench near the dressing rooms. I somehow got involved in a debate between a woman and her girlfriend about which bikini looked better on the girlfriend. It was one of those moments that I love where you develop a familiarity with strangers really quickly that makes them feel like dear friends and that we’re all in this life together, which we are.
I’m terribly bored of myself and all of my ridiculous ailments. Being chronically ill makes one insanely self-involved. Let’s just say that there’s more wrong with me and I’m dealing.
Peter Provost is the best man. Pure and simple. And I have the best mom and sister in the world.
I brought my mom to an appointment yesterday and she might as well have been carrying me like a baby. That’s how safe and secure I felt as a 39 year old lady bringing my mama with me. It was lovely.
I talked to Meg recently and was blathering on about my woes and she had really helpful, loving, practical advice. So practical, in fact, that I told her to hold on while I got a pen. Actually started taking notes. She was so on point and knowledgeable. It was the equivalent of someone taking you by the shoulders, looking you in the eye, and saying “LISTEN, simmer down you’re hysterical. Now, do x, y and z.”
She’s a smart girl, that Dr. Meg. Glad I don’t have to make an appointment and wait 3 weeks to see her.
(Bree took this picture at a parking structure downtown that had a zillion levels. This was towards the top. It makes me laugh.)
Sometimes I feel so overwhelmed with all of the health bullshit that I feel as if I’m drowning. Like it’s all too much.
That happens a lot actually. And then I’ll calm myself down or Peter will help me. And I’ll just keep swimming.
It’s a whole hell of a lot, though.
I don’t want pity or to be felt sorry for or attention. I just want it documented. For myself. For someone else who needs validation or encouragement.
I sit on the couch this morning, with the dog in my lap, snuggling in a blanket next to a huge window with the blinds pulled up so I can soak up as much natural light as I can. It is snowing wildly and all is quiet. Well, not totally quiet. Hadley is learning a Mumford and Sons song on the ukulele up in her room and I can hear her sweetly singing along.
I am nursing a tear duct infection in my right eye. It weeps constantly, and the area around it is sore and tender. I have to explain to people that I’m not crying as I constantly dab my eye. At first I thought it was just allergies, so I ignored it. It got really bad, though. I am on antibiotics (oral) and eye drops (every 2 hours). It is a huge pain in the ass and it isn’t showing any signs of going away. It’s been 3 days.
I was supposed to have an ultrasound on Wednesday for abdominal pain but had to cancel it because I was at urgent care for the freaking eye!
In addition, my back pain is so frustrating and debilitating that I have a love/hair affair with pain meds. Love because they help with the distracting, needling pain. Hate because they are terrible for you and they cause depression, which I already have because of my fucking chronic illness.
Are you sick of me yet?
Depression and I go way back. I’m taking anti-depressants. Probably always will. But opiates (percocet or vicodin) break through the anti-depressants and cause irritability, sadness and dark thoughts. Total pain in the ass. Not scary dark thoughts just not helpful thoughts that make me feel worthless and not enough.
I know I’m enough, dammit.
Damn jedi mind tricks.
So I do the dance in my head.
I am in pain. Do I take something or can I just deal? Hm. And for those curious, Tylenol and Ibuprofen do nothing for the pain so I don’t even bother.
A lot of the pain comes from lupus too. Oh yeah, remember that bitch?
And I’ve been having MORE pain lately because I started a drug called Benlysta about 2 weeks ago. This drug works by calming down the hyperactive immune system of lupus by stopping a protein called “B lymphocyte stimulator”, which is believed to increase inflammatory reactions that attack and damage my body’s own healthy tissues.
Basically, Benlysta is suppressing my immune system. Specifically, those jerkface B cells. This is the second drug I am taking that suppresses my immune system. (The eye infection is suddenly making more sense, right?) I am that much more susceptible to infection. (fun!)
Benlysta is an infusion, which means I have to go to the office, get an IV and sit there for an hour. In the beginning phase, which I am currently in, I go once every 2 weeks for 3 times, and then it’s just every 4 weeks. Forever. (if it works) A separate blog post in order to regale you with infusion room tales. Oy.
The issue is that the drug causes a huge ruckus in my body. My first infusion was March 12 and it knocked me the hell out. HUGE flare. I still don’t feel right. My next infusion is Tuesday, March 26, which is perfectly scheduled during the kid’s spring break. Awesome. I’m worthless for about 5 days following the infusion.
I am telling myself to give this drug time to work. At least 6 months.
As I said, I’m not looking for sympathy or playing poor me. I’m just documenting. Because I tend to not to focus on the negative. It’s not productive. I focus on the goodness in my life because that makes all of the shit seem more bearable. And there is so much goodness.
But I want it documented so I can look back and think “I did this." Or H&F can look back and read this and know that I was trying. As hard as I could most days.
It’s helpful even just writing it all out. Cathartic and validating. I spend so much time pretending I’m fine and blowing it off that I forget to say to myself “Emily, you are a total bad ass. You’re doing great, kid. Chin up. Don’t let the motherfuckers get you down.”
Just reading that made me smile.