To Live and Die with Fibro

Adulting with fibromyalgia, lupus, and whatever other problems my body decides to throw at me. main blog - @the-undeadbeat ukulele archive - @lookihaveaukulele

[allsadnshit]

[spooniestrong]

Beautifully stated, @allsadnshit 💙🥄

[ifihavethespoons]

Normal test results are the fucking worst when you know there’s something wrong.

[ifihavethespoons]

What’s your experience with “leaky gut syndrome?”

Especially relating to Lupus and Autoimmune.

I had a new doctor tell me about it and how it may be the cause of all of my symptoms but I’m finding a lack of evidence to support his claim. Anything that promises to reverse my chronic illnesses without medicine is suspicious. Even when coming from a doctor.

[ifihavethespoons]

Is Chronic Pain a Consciousness Disorder? Treatment for Fibromyalgia Might Come From Physics, Not Medicine - Newsweek

[ifihavethespoons]

why the FUCK is it so hard to sleep at night and be awake during the day?

[currentsinbiology]

This organization is picking up the slack for HHS! Spread the word please so we have MORE sign up for affordable healthcare. 

GET AMERICA COVERED!

Get America Covered helps people get covered and stay covered. We’re here to help people looking to enroll in health coverage and those who are helping other people sign-up.

Open Enrollment will be half as long this year and there will be less public education about enrollment information and key deadlines than during previous open enrollments. This will make it that much harder for people to find the facts and information they need in order to sign up for health coverage.

We’re stepping in to help get the word out - and we hope you’ll join us. We ran outreach and public education for HealthCare.gov over the last three years. Now, we’re taking everything we learned about how to reach people with the information they need and getting to work, helping more people enroll.

[currentsinbiology]

Sign up begins NOVEMBER 1st!!! Get covered!

[ifihavethespoons]

Entry level jobs are not accessible.

[i-need-that-seat]

For structures that have no entry steps, ConvertaStep also makes ramps of three sizes that come in a manual as well as automatic version.

(via ConvertaStep | Wheelchair Accessibility | Ramps | Convertastep - Freedom In Mobility)

[i-need-that-seat]

This welcome mat converts into a fully accessible wheelchair ramp. Beautiful and functional design. I want it.

[pseudosoph-deactivated20160308]

Some more info, for people who are interested.

[i-need-that-seat]

First of all, I can’t believe this has almost 3,000 notes. I’m so glad that people are sharing this - both as a cool design, and also as an important accessibility feature.

Thanks to pseudosoph for linking to additional info (above) regarding weight limits, lift height, and product background – the creator is a wheelchair user himself! Very cool stuff. Keep sharing!

[donutish]

please end the suffering

[spooniestrong]

I’m a -1 on the Normie Sick Scale

[ifihavethespoons]

I LOVE THIS CHART. I'm going to print it out and show it to my doctors when I go.

[ifihavethespoons]

Hi! I have Crohn's & Lupus and I was wondering if you've found any tricks to help cope with the chronic exhaustion. I have moments where I'm fully aware and accepting of my chronic illnesses and moments where I sort of... forget (if you know what I mean) and I get so frustrated with myself when it seems everyone else manages life alright, but I have to nap every two hours and never feel okay. I like working out, but it happens so irregularly because of that. Any tips would be amazing. :) xx

I honestly have no idea. I'm constantly upset at either myself or my circumstances and I kind of think this fluctuation is permanent. The best I can say is learn to accept/enjoy resting. Exhaustion is our constant so resting is always going to be as or more important as anything else you want to be doing.

[cwote]

Let yourself feel.

Thanks for the inspiration @kindersuggestion :)

[friendlyfrankenstein]

So you know how a lot of medical response to chronic pain and fatigue is ‘oh just exercise more and you’ll be less tired!’

well my mom found an article where it turns out basically all of the data supposedly supporting that is complete bullshit whAT DO YOU KNOW. 

TURNS OUT YOU CAN’T EXERCISE OUT OF BEING IN AWFUL PAIN FROM YOUR *NERVES WORKING WRONG*. 

[ifihavethespoons]

Does anyone else find themselves in a loop of rejecting then accepting the fact that they have a chronic illness? I can be at peace with it one moment and fighting a war inside in the next. And somehow, whichever way I'm feeling, it still feels like I'm wrong.

[delightfullydelux]

If you are a white person who works in a medical field and

1. find yourselves angered, annoyed because a patient does not speak fluent english 2. Assume/think POC patients are lying or exaggerating their symptoms 3. Prioritizing white patients over POC patients

Then you don’t need to be in the medical field, please quit your job now.

[optimistic-ambitions]

Ive seen this happen. Shes right. Yall are in the wrong profession if you’re acting like that.

[susiethemoderator]

My regular doctor(Indian) was on pregnancy leave so I had to get a Pap smear from a different White Woman. You have to get them when you turn 21.

Both her and her annoying nurse were obviously in disbelief when I told them I am a virgin. They asked me several times. Then this horrid bitch gave me the Pap smear which was FUCKING painful to say the least because she was not being gentle and after she joked like “oh guess you are a virgin lol heehaw my bad” like I wanted to kick her in the throat I was so mad. Hell, I still do.

[othellhoe]

Every single time I go to my university’s health clinic the nurses ask me like 10x if I’m *sure* I’m a virgin. Like why would I lie?

[susiethemoderator]

Right!!

Like why the hell would I lie to you, my DOCTOR? Of all the people who come and go into my life. If I’m here obviously there is a problem with me and I’m going to cooperate to solve it quickly. Also, I’m going into the health field, I intern at a large hospital in Minneapolis, and im in pre med. I have NO reason to lie to you 🙄🙄

They also do this with the drugs and alcohol question. Like no bitch. It’s so annoying

[dynastylnoire]

I’m a patient actress that is used in training sessions where we role play situations where I’m a patient or patient family member with doctors/nursing students for this very reason. I’ve done scenario where my characters have had depression, were cutting, had a family member die (or is dying), emergency room arrivals (calming panic and giving bad information), domestic violence, and pregnancies where mistakes were made my medical staff etc. 

And what I’ve found is no matter what the training scenario I’m in, before I even open my mouth the doctors are terrified. They assume I’m going to angry before I say anything. Most of the time my characters are terrified so get directions to demonstrate varying degrees of anxiety,fear, and sadness. 

Basically I have to cry a lot.

And even then in feed back, (where the doctors are talking to a facilitator and maybe five other doctors in training in the room) some will comment that they felt I had an attitude, or that I was being irresponsible about my birth control  (in intimate partner violence scenarios) 

If you feel like your doctor or medical staff is treating you unfairly because of your race/ethnicity/sexual orientation etc you are well within your rights to ask for someone else. They are trained to behavior better than this. And yet..

[ifihavethespoons]

When my white female doctor was afraid to put me on methotrexate (a medicine she knew could lower my pain) because I might get pregnant accidentally, I had to repeat over and over that I was a virgin with zero plans to have sex in the future for several appointments before she would listen.

[voyagehour]

i’ve been feeling rly sluggish and a little down, so just to motivate myself and remind myself 

[ifihavethespoons]

MERRICK (aka the-undeadbeat) - THE LOT I DREW - ORIGINAL SONG! - 

a kind of blue ukulele song.  this one’s for the spoonies. . .

Keep Reading for lyrics.

I missed the first step, did we take it?

It happened way too fast to get to look back

I wonder if I may have faked it

because you cannot witness time after the fact

I share these moments with you too

Can it all be only memory?

Still I’m sure I’m here with you

If the world would only let me be

Is the pain and the tormentI endure meant to change me

meant to scar me and maim me until I don't know what I see

Can the beauty survive the stain I have inside

Because there’s too much in me to confine

from the lot I drew in life

I see that look on your face

when you’re remembering who I used to be

Though we’re no strangers to change

I can tell it still hurts to see

I shared those moments with you too

I know now have only memories

I’m sure that I’m still there with you

If the world would only let me be

If the pain and the torment I endure means to change me

means to scar me and maim me until I don’t know what I see

Can the beauty revive all that I’ve lost from inside

Because I did what I did to survive

The lot I drew in life