no spoons here

44F full of pain, bitterness, and several balls of yarn. I'm old and achy and I will complain at length about it.

[silentwinged]

Had an experience this week with an ableist psychologist claiming to want to help chronic pain patients sleep better through CBT-I.

She refused to accept that sometimes, when you're in a lot of pain, bed is the only tolerable place to be. She wouldn't accept that I couldn't leap out of bed as soon as I was awake, and needed time to sort out what hurt, how much, and what I needed to do about it. She also wouldn't accept that sometimes I went to bed a few hours before I was sleepy simply because I was in so much pain that I just needed somewhere comfortable to exist for a while.

Then again, she also insisted I needed sleep restriction that would have me in bed from 3-8 AM... otherwise known as my usual everyday schedule... even though my sleep efficiency was hovering around 90%, and sleep restriction is for people whose SE is 55% or lower. She had no explanation for why this was a suitable treatment.

I'm really starting to doubt this pain clinic I'm with.

[silentwinged]

It happened. I was stereotyped by a doctor.

Finally got into an ortho clinic to talk to a surgeon about the knee I wrecked 4 months ago. They decided I didn't need to see the surgeon, a sports medicine doctor would do (even though I've seen 4 doctors already). He wouldn't listen to anything I had to say, he just decided it was osteoarthritis, even though NONE of the symptoms fit.

Everything about this knee screams meniscus tear. Every doctor so far has told me "you need to see ortho about that knee, I think you tore something." This guy saw "middle age overweight woman with a sore knee" and made his decision.

I told him the pain started after trauma; no it's not achy, it's sharp; it gets worse if I put too much weight on it. He kept making up reasons it was still OA. Then he told me he could do injections to help (expensive and probably not covered by my drug plan).

I have an MRI in 2 weeks and I look forward to calling my doctor and telling her all about what this place said and asking for a second opinion.

[silentwinged]

My B12 was 182 in March. My doctor didn't like that. She put me on monthly injections. Got more bloodwork done on Monday... My B12 is 195.

HOW

[silentwinged]

About a month ago I hurt my knee. I stood up from the couch, heard a sickening pop, and haven't been able to put weight on it since.

Walk-in doc: "Hmm I dunno, maybe it's a Baker's cyst? Go get imaging."

Second walk-in doc with results in hand: "well you have some effusion... Maybe you sprained your meniscus. Go to physio."

Physio: "Hmm.. I don't know, maybe it's bursitis. Here's some exercises."

(the exercises make things worse)

My massage therapist, that I've known for over 10 years and who knows me and my dumb body: "your hip locked up and your stupid hypermobile knee buckled and you rotated your tibia. Stop doing the physio's exercises, and tell her what I said."

[chronicillnesshumor-deactivated]

[silentwinged]

I've realized over the last several months that I have no identity. I don't know who I am or who I'm supposed to be.

I don't have a job. My kids are old enough that they don't need to rely on me anymore. I'm adopted and I don't feel connected to my family or my heritage. Other than being chronically ill, what am I?

I tried reconnecting with my heritage these last few months. I reached out to three indigenous friendship centres. One didn't reply. One offered to help and never followed up after I said yes, please, help me. One invited me for a tour and a chat, made a lot of promises about helping me figure things out, and then ghosted me after I attended an arts & crafts evening that was super awkward (it was me, the host, and two white women, crafting in total silence). At this point, I give up. I just don't have the energy to try any more. I'm walking away from all of it. I need to make it not matter anymore.

I'm just drifting at this point, spending my days waiting for...nothing in particular. I'm just here, taking up space, and it's lonely.

[silentwinged]

Remember, fellow spoonies: nobody said you can't put Skittles or M&Ms in your pill organizer. Treat yourself for remembering your meds!

[silentwinged]

What is it about needing to get up and shower and get to an out of town appointment on time that makes the body go "actually you know what? we should have a nap."

I NEVER nap. What are you doing, body??

[silentwinged]

I'm up to 1mg of LDN and the worst side effect so far is that having 2 beers in one night is now out of the question. I've had miserable hangover symptoms since midnight.

I have an appointment an hour out of town this morning. Should be a great time.

[silentwinged]

Looking for input in an effort to settle a dispute with a hospital. I think that discussing a patient's care in the waiting room in front of everyone is a privacy violation and therefore seems kind of illegal? The hospital disagrees. They say it's totally normal, happens everywhere.

Has a doctor ever discussed your condition, test results, or treatment with you in front of a crowded waiting room?

[silentwinged]

When you tell the nurse your veins are difficult and they say "I like a challenge", that's your sign to refuse.

Challenge failed x2. Now I look like a junkie.

[silentwinged]

Apparently the hospital I've had to deal with for the last week specializes in misery.

I had a Bravo capsule placed on Thursday and I've been in pain, sometimes very intense pain, ever since. I can't eat solid food, and I'm constantly aware of it in my chest. It's making my esophagus spasm. I had to go to the hospital where I had it put in, since my local hospital didn't know anything about how to deal with it.

First of all, the emergency dept is horrible. They discuss your problem with you in the waiting room, in front of everyone else you're waiting with. There's no privacy. I watched someone get handed a gown and told to change. We were in a waiting room/hallway. They didn't even give her a space to change. I have two massive bruises on my arms because my evening nurse thought my IV was "a trash needle" and wanted to put in a bigger one, even though I warned her about my veins. She failed twice and gave up. When I finally got to talk to the surgeon (who was supposed to see me hours earlier and just didn't bother), her answer was "well we can't take it out, it would do even more damage." When I asked her how it was any different from a biopsy or polyp removal she started making excuses, and then offered to keep me overnight so I could get IV fluids. I'm able to drink so why would I take up a bed?? This was an hour after another doctor telling me "well we can't just send you home with nothing!" Well guess where I am now?

Anyway I have to go back up there tomorrow to drop off the monitor that goes with it (stupid thing failed 12 hours into the 48 hour test on top of everything else) so I'm sure there will be more arguing, and more of them telling me to go home and suffer until it eventually falls off. Who cares if I can't eat, I guess.

[silentwinged]

Today's ER visit has most of the tropes:

unmasked persistent cough guy

nauseous child with inadequate vomit bag

junkie coming down, who occasionally screams

old lady with full volume "old fashioned phone" ringtone

guy wearing so much body spray that he has crossed the line and just smells like bug spray (did you just reapply in the waiting room???)

Karen who keeps asking how much longer they have to wait

frequent loud phone calls woman

entire Indian family who packed a whole picnic for their wait

20-something who's only here because work told him to come ("I feel fine")

I'm missing loud YouTube watcher, feral toddler, and gruesome work injury guy, but we'll see what happens.

Anyway the whole waiting room smells like Deep Woods Off and kathi rolls and I've only been here an hour and a half. Gonna be a long day.

[silentwinged]

7th dose of LDN 0.5 and I feel awful. Everything hurts like hell, even breathing and eating hurt. The heartburn is relentless.

Everything I read says this can happen and it can take a few weeks, but living it is so much harder than I thought.

I have a phone call with the NP tomorrow to see how it's going, so that should be terrible.

[silentwinged]

I should probably keep a record of this somewhere..

I started LDN on Thursday. It took ages to get it - after my doctor insisted it wasn't a thing I got into a pain clinic, where the nurse said I was a great candidate for it, and that we'd talk about it at my second appointment... in 4 months. I had to remind her on that appointment and she sent the script off to my pharmacy, insisting that yes, they do compounding. They do not, and I had to get her to send it to one that I know for sure does. That took a whole week. Anyway it's in a gross goo that is too sweet, so not very pleasant.

So day 1, I didn't really notice anything. Day 2 I had heartburn that would not let up. Day 3 I started getting little electric pains in random spots, and bouts of dizziness. Day 4 it felt like my whole digestive system was trying to curl into a ball and roll over.

And here I am on day 5. My ribs hurt, my stomach hurts, I'm dizzy, I have a weird headache above my right eye, and it feels like someone keeps poking me with a cattle prod. I know a lot of people have said sometimes you flare in the beginning but then it settles down, and I hope that's what this is. I've been having stretches in the afternoon where I feel great, so I'm getting things done while I can, because we need to get this house sold!

[zebulontheplanet]

Sometimes I’m mean and grouchy. If you were in pain every waking moment then you’d be mean and grouchy sometimes too.

[silentwinged]

Husband: "let's get this place ready to sell! Let's declutter and clean and repair and paint! We can get it done by the weekend!"

My fibro: "no the fuck we can't."