Chronic Illness · medical misadventures · Musing · Rants · Self care

Ire Me

Spoons?

Maybe.

Something is lacking. The older I get, the longer it seems to take for me to process my own life.

This past 30 days or so has been indescribably conflicted.

It’s so hard to untangle everything sometimes.

Finally got my MRI on my lower back. One of my discs is slipped and pushing on a nerve root.

But it’s just pain and won’t kill me…

That surgeon will be forever remembered. Asshat.

So many appointments this week. At least now there’s a constructive way to channel the hurts from the weeks leading up to these evaluations and follow-ups.

Watch, I’m going to get shuffled around again and offered chemical bandaids. A soma holiday I need never wake from. Just sign here.

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diy · family · Musing · parenting

Projects

They add up. New ideas all the time. I can never turn them off but sometimes they will hibernate, for a time.

Older mini me wants to be a terrifying werewolf. We are some craft fur, hot glue and scissors away from one bad ass pre teenwolf.

Younger mini me wants to be a velvetty black cat. I already have that one available thanks to older spawn having the same wish at the same age some years ago.

I’m making them clawed gloves. Super glue, knit gloves and fake nails. One set black with sparkly nails and the other brown with cracks and dirt and a bit of gore.

We are going to the pumpkin patch soon.

I acquired crocus, daffodil, iris bulbs and more plus some basic hand tools. It’s fall and time to plant the beds for spring. Grand project for the kids to help with.

Both birthdays are around the corner and they both want jellyfish.

I wish there was more time in a day. I have all these ambitions but often lack the energy.

I just want my girls to be just as capable as I am and far healthier.

Rants

Wanted

I am lonely.

I am lonely as a parent. I am to only person emotionally available to them. I’m the one doing all the extracurricular enrichments. I pack all the lunches. I kiss all the booboos.

I’m lonely as a homeowner. I want to do things with the house, paint and garden and new floors. But if I do these things on my own it steps on toes.

I’m lonely as an adult. My dearest friends are so far away.

I’m lonely as a wife. My spouse has zero time for any of it.

I’m jaded. I’m bitter. I’m burnt out. Maintaining this mask is exhausting and I don’t understand what I need well enough to ask for help even.

It feels like I’m drowning.

Then there’s this medical burden hanging over me like a dark cloud.

I want to be more for my children. I want to be a better friend.

I don’t know how to be a better spouse, he’s never here anyways. Even when the hours weren’t this extreme, he never chose us over work. The sad thing is, is he’s working for us. But us doesn’t feel like home anymore.

Chronic Illness · Musing · Self care

Spoon Beach

It’s gorgeous. Tempted to gather my portable craft junk and go do it on the beach. Also considering staying in bed where it already is because no sand and no sunblock are pleasant.

I’m pretty sure this is one of the most entitled/privileged problems I’ve ever had. The only reason I don’t loathe myself for it is how hard I live to please others and how much pain I’m in.

I’ve realized I’ve gaslit myself into thinking that everybody hurts most of the time and that mine is not special nor should I be allowed special accomodation for it. I also attribute some of my die hard “lets do all the things” attitude to society’s perception of the disabled.

I don’t want to be seen as diminished or a drain. Surely if there is time to crochet on the beach I can make more productive use of that time doing menial tasks at home.

You could go so far as to change “disabled” to “house wife” and it would still apply.

I’ve already talked myself out of going, but only because I’d need to get gas and pack a snack and… spoons…

Chronic Illness · medical misadventures · Rants

A tale of two rejections

On Monday I saw the new physical therapist I’d been assigned to. He hadn’t seen my file yet. On first greeting me you could see he doubted I needed his services. His face, though not unkind clearly read, another spouse with a trivial ouchie.

While hearing my specifics and patiently listening to it all I could see his opinion visually change. By the end of my history the abject horror was plain to see. The man pitied me in a way I’m not used to seeing.

He carefully explained the nature of injury most of his patients saw him for. The types of injuries that require a few sessions of PT, the kind that are recoverable. He told me his practice was not suited to the ongoing twice a week soft tissue maintenance care I needed.

He let me down easy. He promised to send my referral out to someone who could help and get me in for a session if the new doc had a long wait time. I couldn’t have asked for a kinder practitioner.

———————————————————–

The surgeon I saw today was unprofessional. He took a quick glance at my mri, didn’t listen to much of my medical stuff, told me I was too young to have these issues and that I didn’t need surgery.

Then he suggested treatments I’ve already tried without success. And he suggested treatments I’m allergic to. Then he said even if he did operate, the success odds were so poor he wouldn’t bother anyways. He told me it’s just pain. It won’t kill me.

He asked me what meds I took. I told him. He told me muscle relaxers were the same as having a drink. That I may as well just drink instead. I explained that the celebrex I was on earlier this year left me with so many ulcers I could no longer process gluten and alcohol just exacerbates the gut issues. He told me that sucks and how much he likes beer. He mentioned beer quite a bit after that. Told me I couldn’t take anti inflammatory meds.

No NSAIDS, jee I just fucking told you all of this but you were too busy dismissing my pain.

More anecdotes and bullshit later he tells me to go to a pain management doc (I’m already scheduled to go see in Jan) and tells me to go to physical therapy (again the referral is already in but somebody couldn’t be bothered to listen). He told me I didn’t need surgery because it wouldn’t help and nobody would tell me better because things are too degenerated to fix but I don’t need surgery because I’m not even that bad yet and then strolled off like he was god’s gift to the injured and weary.

———————————————————–

I went immediately to my primary care office and asked for a different surgeon.

So now I wait.

Again.

Chronic Illness · sjw woes

Rage!

Or something.

Rage at what? The state of the world has me so dissatisfied. I want to rally. I want to fight. I want to level the playing field. I want an argument so profound that even the staunchest conservatives realize where we are at socially.

But I can barely load my dishwasher right now. And it takes me an hour of psyching myself up to use the phone to advocate for my own health and wellbeing. I made tea and then forgot about it.

Healthcare. Disaster relief. The dumpster fire that is politics right now. Where do I even start? I’ve voiced my opinions about it all. I keep reading more. Every day a new horror and I’m no longer even shocked.

My medical stuff is the same bag. I’m equal parts horrified and jaded. I’m just so tired of it all. I want the whole world to know my struggles are valid. I’ve been gaslit for so long. My biggest fear for a long time was maybe I’m fine and this is all in my head. Some story I made up to make people pity my tragic beauty. Now my fear is my issues might be inheritable and I’ve fucked over my children or my injuries will prove fatal prematurely and I’ll leave them when they need me most.

I guess that’s one way to define growing up… How do I keep hope kindled in their little souls when everything seems so bleak? How do I show them not to be callous when I have so much to be bitter about? How do I teach them enough resilience to prevent them from being victims of the global climate of humanity?

The fires that burn in me were the ones that fueled me to protest and march. To regularly go out and collect errant trash at the parks we frequented. To always have granola bars for the steeet kids and assorted others. Now the fires that burn are those of inflamation in my quickly dissolving joints. Sometimes I write letters to senators and congress.

Here I am wondering how many spoons I can allot to caring about the state of the world we live in and wondering what the fuck happened.

Chronic Illness

Mom Cold

We’ve all heard of the man-cold. It brings with it a sense of mild hilarity and sympathy.

Mom colds are working colds. Lunches still need to be packed, uniforms washed, dinner made.

But what happens when someone with chronic illness like fibromyalgia or (in my case ‘and’) ehlers-danlos syndrome gets a cold?

I was already mid flare and feeling pretty wiped out. What was 2 days of sneezing for my kids and a sore throat for my spouse feels like a full blown plague to me.

I’ve been in bed 2 days. My head is so stuffed up and my body aches are 4x worse than what’s normal. My lungs are raw. There’s an elephant on my chest. My IBS is flaring too (why not?) and my throat aches.

Thanks to my spouse’s career, I’m basically alone on the daily responsibilities and needs of the household. The cleaning, cooking and parenting all fall to me.

Luckily, I’m too flabbergastingly laid out to even concern myself with all that isn’t getting done.

Except I still have to go get the kids from school, wash their clothes and make dinner somehow…