yurplek

[yurplek]

A spoonie experience:

The grand hoax of bed-bound euphoria

Lying in bed resting, feeling pretty good, I think the flare must be over and I can actually get some things done. 

Get up.  5 minutes later can barely stand let alone function.

Stupid hoax.

[yurplek]

I recently saw a pain scale with the caption “if you can still talk, your not at a nine” and it really really bothered me. One of my doctors (who works extensively with teenagers with CRPS) said that one common theme he sees in his patients is a complete lack of reaction to pain. He told me that when he performs procedures and tests that are objectively extremely painful, often the teenagers will be smiling and cracking jokes, even though he knows that they are in excruciating pain. At nine I can carry on a conversation (not very well, because at this point things start to get really cloudy for me, but still a conversation). During my nerve conduction study (If you’ve ever had one you know how awful it is, and if you haven’t, it involves a six inch long eighteen gage needle stabbed deep into your muscles over and over while you clench and relax them as instructed.) i chatted with the nurse and played games on my phone. It wasn’t that I wasn’t in pain, it was just I was also outside of it. For teenagers with chronic pain a disassociation from themselves and their bodies is common, even expected. If I “grounded myself”, saw myself as In my body and of my body and nothing else I don’t know how I would survive. In order to live, to get out of bed or wash my hair or put on pants I have to separate ME from my body. It’s how I can pop my shoulder out of socket and put it back in during a conversation. It’s a matter of survival. And I’m tired of people saying that my pain isn’t real or valid because of it.

[yurplek]

When the nurses see opioid use in my medical history…

[yurplek]

My Dr. Visit - A Summary

Doctor: So why do you think you’re getting worse?

Me: Because my body doesn’t work?

Doctor: Ok see you in 6 months.

[yurplek]

New comic about going to the doctor with chronic pain

[yurplek]

[yurplek]

We need to raise money to take our dog and cat to the vet and register them with the city so we don’t lose them. We rescued both of them and Socket, our dog, is my almost 2 year old’s best friend. We can’t lose them, they are our family. Please share this.

[yurplek]

My doctor: Take this birth control, you shouldn't have any periods. Me: Takes birth control, on time, everyday. Also me: Has 2, full-blown, heavy AF periods a month. With spotting in between. Can't say the bc is really helping much...

[yurplek]

i can’t hang out tomorrow i’m too busy doing nothing alone sorry

[yurplek]

Spoonie:

When you wake up tired and your brain fog is 100%

[yurplek]

push me down and whisper naughty things in my ear like “i wont ever make your illness about me” or “i know youre sick, i know youre not faking”

[yurplek]

I wrote a poem for my endometriosis, and any invisible illness in general. Idk if it's done or not. I hope you like it! Did you forget? Sometimes I feel like you forget me, The parts you don't always see. For you, not distain, But there's constantly pain, Stabbing and grinding, I'm faltering, Sometimes I feel like altering, My body's composition, To be in a better position, To withstand this tortue, It's hard to keep going further. Outside I may look fine, Inside I feel like I'm dying. Did you forget I was struggling, I mean, some days I feel like dialing, 911, But no one will come. This disease eats away at me, Sometimes I feel like you forget to see.

[yurplek]

You’re allowed to show symptoms.

[yurplek]

A PSA About Chronic Pain

Pain is draining. Even though it is physically *painful*, that’s just the tip of the iceberg. Pain takes energy. It steals joy and tries to put a hold on happiness. There is truly no relaxing when pain is present; one is constantly fighting to be stronger than the pain. 

Pain turns small tasks into marathons. Showering becomes difficult and draining. Eating is exhausting. Getting dressed and brushing teeth can seem nearly impossible.

If there was one thing about my life I wish people could truly understand, it’s that pain is a dominating force in my world. I may fight it, I may ignore it, I may even have good days…but pain - or the plethora of symptoms it brings along - is always present. 

Does that mean I am unhappy? No. Does that mean I am strong? Yes.

[yurplek]

Me on my period lol

[yurplek]

Painsomnia

[yurplek]

I've kind of been in denial about how much pain I've been in. But this past week, my body has made sure I know 100% that my endometriosis has started growing again. I'm at a personal crossroads as to what to do. It sucks having a condition that has no cure. Especially when you've tried all treatment options offered short of radiation and a hysterectomy (no, that will not make it go away). At least my mom skills aren't really being hindered by this, but I am grateful that my husband is actually supportive and a good dad/husband. Also, I have been slacking with keeping up with my blog, but I am going to work on it. Things have been weird lately.