sasha_feather: neat looking overcoat (coat)
A few of my tips and tricks for managing chronic pain.

Specific to facial nerve pain:
--I wear the lightest possible glasses
--I do sinus care things, like nasal sprays, eating spicy foods, taking mucinex, using my inhaler.
--Frozen grapes and other frozen fruits act like an ice pack inside the mouth.
--Chewing gum and snacking and drinking cold drinks can help distract me from the pain.
--Lying down and meditating.
--Sometimes I sleep with an ice pack
--Botox was of some usefulness, but what was better:
--A nerve block every three months or so. My doc targets the infraorbital nerve.

Migraines / Light sensitivity:
--I keep the overhead lights off in the apartment, and rely on lamps.
--I wear a hat with a brim when I go out. The hat needs to be big enough on my extra-large head, so it can be a challenge to find a good one.
--Lying in bed and listening to music or podfic with an ice pack on my head or face.

General pain:
--Compression socks. A recent addition to my life and I like them.
--Good quality shoes with lots of arch support.
--I keep an electric heating pad by my bed, and another one by the recliner, so I don't have to unplug and move it around.
--Fingerless gloves, for typing.
--In general, staying warm is helpful, so I will for example wear leggings under my jeans in the winter.
--Various pain creams like Icy Hot, Ted's pain cream, etc.
--The freezer has 2-3 ice packs in it, always. I wrap them up in a pillowcase.
--Loose, comfortable clothes. This can involve cutting tags off of clothes, and cutting notches in the necks of shirts. My favorite kind of shirt is the henley.
--If you can afford it, getting a massage or other alternative medicine can be helpful during really bad pain episodes.
--I play video games to distract myself.
--I rest a lot. For example, do the dishes, then sit down for a few minutes. Take naps.
--I keep a stock of various medications and supplements, though most of these are of limited usefulness for my main problem which is nerve pain. Some of them do help with other kinds of pain. I do keep anti-nausea pills and anti-dirraheal pills handy, because they work.
--Audiobooks and comics are a lot easier to read than traditional books when you have impaired concentration from chronic pain.
--Lower your expectations for yourself. Try not to compare yourself to healthy / non-disabled people.
--Find disability community.
--Ask for help.
sasha_feather: the back of furiosa's head (furiosa: back of head)
So, I have phone phobia. I used to consider it mild, but these days it's a real problem. Here is an example.

This afternoon, I finally got myself to make a phone call to refill my Enbrel. This is my main medicine for RA, which I take once a week. I'm out and due to take my next dose on Saturday, so, I know I am running late on this.

I had to leave my apartment and stand outside to make the call, due to cell phone reception. Then I had to wait on hold for about 5 minutes.

When I finally spoke to someone she said that Thursday is the last day they can mail out refrigerated products and it's too late to send it now. So it will get sent on Monday. Can I come pick it up tomorrow?" I ask, as the specialty pharmacy is in town and I have a car.

"Your insurance locks you into the mail order system, and we don't have an option for pick up," she said. Even though this would save them money by not having to pay FedEx. There is also no online re-order system. You have to call. So, fuck me I guess.

I feel bad about myself when stuff like this happens: I feel irresponsible for not calling sooner. I feel like there is something wrong with me that I can't seem to make a simple phone call. But-- if there were an online form, I could do it in 2 seconds. And driving to pick up the med (before they changed the system) was not usually a problem for me unless I was very ill.

The medicine comes in a fairly large, styrofoam shipping box with ice packs and bubble wrap inside. My last one, I returned to a random pharmacy after taking my med out. But I imagine that most people throw all this material away. It's hard for me to imagine how the insurance company is possibly saving money with this system. My own health care is suffering because of it. I *also* don't get the interaction with a pharmacist that I would get if I picked up the med myself.

What a fucked up system.
sasha_feather: neat looking overcoat (coat)
I need to remember that on many days, probably most days, I feel better in the evening. It's ok to zone out and rest and nap during the day if I need to.

The acronym HALT stands for hungry, angry, lonely, tired, and is a way to check in with yoursef. My roommate and I decided "cold" was a good one to add, and you can say this as "LATCH". Lately I'm cold quite frequently, and layering clothes or blankets on helps me a lot. I also wear fingerless gloves (indoors) for much of the winter.

Today I am grateful for:
Volunteering, because it gets me out of the house and interacting with people.
Fresh fruit.
My roommate.
Warm, wool clothes.
sasha_feather: the back of furiosa's head (furiosa: back of head)
(Re-posted from twitter- thanks to alice wong and heather ure for starting the discussion)

Some of the health work I do around my chronic pain:

1) making and keeping doctor appointments. Not trivial, as I have a lot of them.
2) Calling to refill prescriptions. I have about 8 that need monthly refills.
3) getting scripts from 2 different pharamacies
4) dealing with insurance
5) Dealing with dentists/hygienists who don't understand that i have chronic pain in my mouth nor how to deal with it
6) buying OTC meds like Icy Hot cream, vitamins; devices like a heating pad and wrist brace.
7) Scheduling time for rest and naps
8) balancing exercise, stretching, and rest; my energy varies from day to day
9) checking accessibility of events. For me an accessible event has: a place to park; comfortable seating; low lights; low noise; a bathroom; a place to refill my water bottle.
10) Keeping certain foods and beverages on hand.
11) Keeping my ice packs stocked up in the freezer.
12) Buying expensive shoes, rotating them, and keeping track of if they are worn out
13) remembering to take all my meds and packing extras when i travel
14) teaching myself to mouse left-handed. Adjusting computer games to left handed mode (due to pain in R shoulder and hand)
15) Buying the lightest weight glasses available and getting them adjusted many, many times, due to facial pain. This is what keeps me away from buying inexpensive glasses online.
16) keeping track of my fingerless gloves (which help my hand pain), my hats (for light sensitivity), and buying loose clothes
17) going to many therapy sessions and a chronic pain group
18) trying every fucking alternative therapy and having each one fail
19) reading articles, blogs, and books about disability
20) doing emotional work around grieving and acceptance of pain
21) dealing with insomnia from pain
22) dealing with depression/anxiety exacerbated by pain
23) managing other people's emotions and expectations; educating others

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