Going Where Everyone Else Has Gone Before

I'm a forty-something, fat positive, disabled housewife and I'm fed up with being the first left behind and the last to see. This is my life, lived my way.

[edskittyfl-blog]

I have drug induced parkinsonism..  The Requip apparently causes this condition and the receptionist should have reported this to  the doctor right then so I could be treated.  Now we've talked to a different receptionist.  Who took the information down and put it in my physician's box labeled "urgent".

The tremors are worrying and I keep dropping things but the fluid accumulation is horrid!  At least the hallucinations have stopped.

[edskittyfl-blog]

Receptionist Gods

The Mirapex wasn't working any more and so my physician replaced it with Requip.  I took it for a week but couldn't withstand the side effects.  My wife called the doctor's office to let the doctor know.

The site for the medication advises that the side effects I am having warrant a visit to the doctor IMMEDIATELY,.

His receptionist told us to stop taking it and that was the end of the matter.  That was a week ago.  One more week has gone by and my condition has deteriorated.  I fell getting into bed because my muscles wouldn't support me.  I twitch constantly and my face, hands, and legs are swelled.  I can't really hold a device for long or even read because of the spasms.  I am anxious and nervous.  I see and hear things which aren't there.There are weird "movie clip moments" in which I am doing something and the perspective snaps forward five or ten seconds.

I can't believe this happened because a receptionist thought she was god (well, a physician but that's close enough!).

[edskittyfl-blog]

Let's Stick Together

I removed several Tumblrs from mine, since the statements made therein were upsetting to me.  If they had not been so full of judgment and hatred and if they had not appeared on a daily basis, multiple times a day, I might have just ignored them.  However, I have always maintained both my Tumblrs as safe spaces.  They cannot be such with someone else's inconsiderate hatred in the background.

Speaking of hatred, it would do well for those spreading it to remember that they may permanently drive off otherwise supportive people.  I am tired of being hammered about privileges I apparently have just for existing.  There's certainly no privilege in how I live now or I would be able to get good medical care.  I could call an ambulance or rescue out to the house without worrying about the laughter. I could get vital medications prescribed and filled on time with no gaps in coverage.

No one in our particular boat holds all the spoons.  Be nice to one another or at least civil.

A sick, disabled, or person outside the norm somehow (gender, neuro, etc.) is still that particular qualifier which puts them outside the understanding of a normative society.  It just doesn't make sense to me to pick those qualities into smaller ways to discriminate.

The wheelchair users complain about those who are still mobile or who have invisible disabilities.  The bed and couch ridden complain about the privileges given wheelchairusers while wheelchair users and other active disabled shoot back with the cripple equivalent of "Just do it!". Some of us wish it were that simple.

We have debates about who is "really" disabled, chronically ill, autistic, trans-, gay, lesbian (and leave out all those in between as a joke).  We make posts telling other people what to do so that we can have a world conforming to us (not like equal access or nongender restrooms but with who can write for or roleplay who for gods' sake!) at the expense of others' needs and wishes.

How about letting qualified professionals and the individuals decide these things?  We don't live in any body but our own.  It strikes me as profoundly destructive to try limiting others' actions.  After all, we are ALL still part of that original group mentioned and as such we face a lot of similar challenges.

In the experiential realm, like tends to attract like.  My primary disease is Ehlers-Danlos but I also have mitral valve prolapse, lumbar stenosis, metabolic failure (originally PCOS - it destroyed my metabolic and reproductive organs), psoriatic arthritis, fibromyalgia, chronic bronchitis (that's a form of COPD, as is the asthma), clinical depression, and generalized anxiety disorder.  I married someone with clinical depression who is genderfluid and therianthropic.  My wife has generalized anxiety disorder and PTSD.  My boyfriend was shot in the line of duty and now has a jujunostomy with a feeding tube.  He can still swallow and therefore eat some items on his own but doesn't get enough nutrition that way.  Tube feeding is the best the docs can do.  He's a flamboyant gay boy who somehow ended up with an emotional attachment to me.  Our foster daughter (my boy's youngest sister) is autistic.  My blood sister is mentally disabled and autistic.

Need I go on? When interacting with people, an entire class of experiences comes into play and you, based on behaviors in a medium such as Tumble, are simply not equipped to judge their validity or place in the disabled and chronic illness communities.

[edskittyfl-blog]

I don't wear the black stetson much but I decided to put it on today while revising entries in my reading journal and trying a new reader. I don't remember what was playing on the radio but my husband was doing a little dance in the background and making me laugh. I am starting to feel better. We still don't know what exactly happened. A dear friend made the blanket; it's the lap robe for my wheelchair.

[spooniestrong]

http://weatherkittyapp.com/chronicle/the-healing-power-of-cat-purrs/

spooniepets

[spooniestrong]

New meme: Spoonie-friendly partners

[edskittyfl-blog]

"You know you have a Spoonie-friendly partner when…you wake up and find out he's warmed your " sickie corner" with his own electric blanket."

[positivedoodles]

[organize-ability]

[Batteries in various stages of power against yellow background. Title text: “Effects of Social Events on Spoonies.” Battery 1 is 3/4 full with caption: “Getting ready.” Battery 2 is 1/2 full with caption: “1-3 hours at event.” Battery 3 is 1/4 full with caption: “1-3 hours at event.” Battery 4 is empty with caption: “Travel home.”]

[brownhairedmaiden]

Found on Instagram. Not my content.

[localgaycryptid-deactivated2015]

Ableist Assumptions

There was a bad post on my dash being like “we need to be careful about encouraging bad habits, staying in bed all day is okay as a coping mechanism / self care but shouldn’t be a continuous thing” and like Fuck You, not everyone gets better, not everyone can get out of bed every day, where is the fuckin threshold, how many weeks am I allowed to be disabled for before it stops being self care and starts being a personal fault, Fuck You

[edskittyfl-blog]

I wanted to address this because I have seen the same sentiments voiced by other Spoonies.

If you are lucky enough to have a mild form of your illness and the complications are minimal, you can get away with living in that manner.  However, staying in bed all day is a necessity for some of us and not a coping skill. 

 When I have to go somewhere it involves a lot of schedule juggling so we can do what needs done on a good day.  That involves calculating when my Fentanyl patch needs replaced (the second day is usually most pain free) and taking the prescribed pills for breakthrough pain so that I won't collapse half way through our errands.  We're less likely to go out if the barometric pressure will be changing or there's a storm coming.

Most of the time, half of what we plan doesn't get done.  By the time we get home, my legs are swollen and my lower back is snapping like a set of crazed Lego's.

I spend the next day or so recovering.I sleep a lot because when I am asleep I don't feel as much pain.  At this point, if consulted the doctor would have ordered bed rest anyhow.  If I try to push my limits and keep doing things, I become even more I'll as the pain increases.  We can't go to the ER because we're afraid they'll deny treatment and label me drug seeking.

I have a dog's chew toy I bite to keep from screaming.

It's bad enough to suffer like this and have non-disabled people tell me I need to get out of bed, exercise, and go places.  It really sucks to hear that in a community which ought to know better.

[theproudzebra]

I worry about how often I talk about being sick. It has become a personality now, this whole “being sick” thing. It isn’t just a side note anymore. It’s now the government my body is ruled by

(via theproudzebra)

[qjusttheletter]

1. At least it’s not cancer. [What would you say if it was? Also - fuck you.] 2. I wish I could stay in bed all day long. I’m so busy all the time, haha. [Haha, fuck you.] 3. Wow, it sounds so relaxing. Lucky you! [Fuck you.] 4. How much money are you making off the government with disability pay? [Fuck. You.] 5. Can’t you just ignore the pain/fatigue/nausea/dizziness/etc.? [Can you ignore having your foot chopped off? Should we check? Fuck you.] 6. You shouldn’t talk about it so much. It makes people uncomfortable. [I’m uncomfortable too. Fuck you.] 7. You shouldn’t exaggerate it so much. No one will believe you. [Fuck you.] 8. You shouldn’t - [Fuck you.] 9. Can’t a doctor give you something to help with the pain/fatigue/nausea/dizziness/etc.? You should ask. [Fuck you.] 10. You should try rubbing the root of a mandrake plant picked under a full moon in the third month of the seventh - [Fuck you.] 11. You should try these supplements. My aunt’s friend’s daughter’s father-in-law did, and it did wonders for him. He lived to 103. [Fuck you.] 12. You should - [Shut up and fuck you.] 13. But - [No.] 14. [And our personal favourite:] I think I’d kill myself if I was in the same situation. [Why do you think that’s okay? Did you actually think that through before saying it and honestly go ahead anyway? Oh, and I almost forgot - fuck you.]

What I think when you say… a.k.a. Fuck You

//q.e.l.//

(via spoonsandnerds)

There's also the time honored "Lose some weight and you'll feel better.  This diet/scam group/supplement is amazing."

Fuck you.  I was quite active before I developed my medical issues (not one of which can be traced to or caused by anything but bad luck and rotten genes).  I miss going for walks, taking the dog out, and going on day trips.  Also, fuck you again.  Insurances don't pay money for expensive DME if you don't actually need them.  Asking me to walk a few steps so you can justify judging me lazy is just rude.

[positivedoodles]

[mamas-still-doing-it-all]

My uncomfortable level of pain is most other people’s I’m dying pain.

(via mamas-still-doing-it-all)

[twloha]

Self-care is not selfish. You cannot serve from an empty vessel.

Eleanor Brownn (via twloha)

[nativeamericannews]

[edskittyfl-blog]

Conversation With Overexcited Husband

Me: (on discovering he finally decided to build my chicken coop)I found some plans which are wheelchair accessible!

Husband: (unfortunately struggling with his ADHD and therefore over focused on the project)I don't know...how about this one? Or this one? Or THIS one?

Me: (points at man in wheelchair in photo) But he's able to help care for the chickens.

Husband: Just because he's sitting there in a wheelchair doesn't mean anything.

Me: ....

Husband: (returning an hour later) We'll do this one (which is not the one I picked and not hand in accessible).

Me: *struggles not to cry as everyone else talks excitedly about getting the chickens*