Just A Little Lupie

25. PhD student. Diagnosed with Lupus & RA (and more) Feb 2016. I try not to sugarcoat things.

[justalittlelupie]

Lupus life

Means waking up with just enough spoons to take a shower and go back to sleep for several hours. 

[justalittlelupie]

My reaction to the Senate “Health”care bill

I have had bad anxiety my whole life. Let me preface this post with that. I have been on an anti-anxiety medicine since my early teens, went on another one (for a different reason) a few years ago, and yet one more earlier this year. It’s mostly under control.... until the Senate produced their joke of a health care bill. 

This past weekend, I was so nervous about this senate bill that I couldn’t sleep. Instead, I looked into to immigrating to Canada, England, or Germany. 

Canada: living in the Detroit area, I have been to Canada more times in my life than I can count. I used to work for a Canadian hockey league that had a team on this side of the border. I think I’d do quite well there. 

The problem: Canada rejects people with disabilities from permanent residency and citizenship. Clearly, this would almost certainly include me. Canada is still on the table but their rejection of people with disabilities is depressing. 

UK: Doable. My mom’s family is from there and I still have plenty of family that lives there. I think it would be a pretty easy transition. 

Germany: Also doable... ish. I don’t speak German (but most there speak English) but I do have a little family over there (dad’s maternal side is German). 

Problems: UK & Germany have a blanket ban on pit bulls and my fur baby is probably a pit bull (she looks like a mix- we adopted her from a shelter). 

But let me review here: I was looking to IMMIGRATE because of freaking healthcare. Emigrate from the richest country in the world because they want to take away the healthcare that I need to live. 

This is where we’re at in 2017. And I am beyond privileged to know that I have the option to move if I needed to. The vast majority of people with similar health issues don’t have that flexibility. 

Pathetic. 

[justalittlelupie]

Senate Healthcare Bill (& The Disabled)

It’s absolutely, bitterly hilarious that Republicans think that they can jam through a piece of legislation that affects most of us (the disabled & non-disabled alike) in one way or another- and affects almost all of us negatively. 

We, the disabled, are not going away. We are used to fighting or dying.

If we don’t fight, we die. 

So we will fight this legislation. We know that death is our alternative. 

And this time, we’re fighting for everyone who isn’t used to fighting the daily battle. And that’s OK. We’ve been training for this for a long time.

Hook on to the back of my wheelchair. I’ll gladly carry you through this fight. 

[justalittlelupie]

Yes, I see you trying not to stare

I am obese. I’m in a wheelchair. I see you trying not to stare at me. 

I know what you’re probably thinking. I’ve seen the memes, the pictures of other “fat” people, the open mocking as though we are a spectacle. 

You know what you don’t see? 

From the time I was 3 through my years in college, I had been a year-round athlete. There was actually a point in my life where I needed help putting on weight because I was exercising a lot, eating like crap, and thus stayed underweight. 

I had the energy to go to university full time and work full time. 

I loved being active. I loved playing sports. I walked whenever possible and was never good at sitting still. 

Then, my body began to attack me. 

The first semester of my PhD program, my body basically shut down. I was sleeping almost 20 hours a day and I was in so much pain that I couldn’t walk to the bathroom. I couldn’t even hold a book. 

Many bad guesses later, I was diagnosed with lupus and rheumatoid arthritis. Lupus is a disease that attacks its own cells thinking that they are diseased when they are really healthy. It is a disease that can kill you within a few years if not treated. 

Unfortunately, one of the treatments is prednisone- a steroid. I happened to have a particularly hard time with it and put on nearly 100 lb in just a few months. Working with a nutritionist, I controlled my eating but given how much pain I was in, I was bedridden. So my weight ballooned. 

Now, I use a wheelchair because my joints are in so much pain that every step feels like someone is stabbing my hips. The chair hurts, too, but at least I can get around in it. 

So yes, I see you trying not to stare at me. I know what you’re probably thinking. But what you don’t see is that I’m fighting for my life. You don’t see that I’m swimming almost every day and probably eating way better than you. All you see is a “fat” person who is too “lazy” to walk. 

Honestly, I don’t owe anyone an explanation. And frankly, I don’t care what anyone thinks of me personally. But I saw a meme earlier mocking a large woman in a wheelchair and something exploded inside of me. “How dare someone judge that person, that they’ve never met, based on nothing more than a snapshot?” 

We do see you staring. 

[justalittlelupie]

Perfect example: 

Zuma Juice uses a woman in a wheelchair to demonstrate the “weak,” “lazy,” and “unhealthy” non-juice user. 

https://psmag.com/social-justice/heres-the-worst-juice-commercial-ever

Yes, we see you staring. 

[justalittlelupie]

Being a patient is a full time job

Of course, not one that’s recognized by our pseudo-capitalist-feudal system.

Many of us (patients) put in well over 40 hours a week into doctors appointments, tests, pharmacies, sorting pills, etc, etc. We’re also the least equipped to do it as most of us are also battling chronic fatigue. 

But we live in a system where this labor is worthless because “they” say we’re not making money. We’re not being productive. 

I disagree. 

My medical bills totaled over $200,000 last year. My “job” as a patient is making doctors, hospitals, and pharmaceutical companies money. Heck,  if we’re going to judge how much money we make other people, we patients are extremely “productive.” 

I do “work” a “traditional” job, but only because I am beyond lucky to work from home most of the time and I have flexible hours with an understanding boss. I am in an extreme minority in this country and I count my lucky stars every day. 

Perhaps next time you think or hear that a person who is disabled, chronically ill, or on disability is a drain on the system (a common undertone in political discussions right now), just think about all the industries that would collapse without patients. 

Just a thought. 

[justalittlelupie]

Yes, I see you trying not to stare

I am obese. I’m in a wheelchair. I see you trying not to stare at me. 

I know what you’re probably thinking. I’ve seen the memes, the pictures of other “fat” people, the open mocking as though we are a spectacle. 

You know what you don’t see? 

From the time I was 3 through my years in college, I had been a year-round athlete. There was actually a point in my life where I needed help putting on weight because I was exercising a lot, eating like crap, and thus stayed underweight. 

I had the energy to go to university full time and work full time. 

I loved being active. I loved playing sports. I walked whenever possible and was never good at sitting still. 

Then, my body began to attack me. 

The first semester of my PhD program, my body basically shut down. I was sleeping almost 20 hours a day and I was in so much pain that I couldn’t walk to the bathroom. I couldn’t even hold a book. 

Many bad guesses later, I was diagnosed with lupus and rheumatoid arthritis. Lupus is a disease that attacks its own cells thinking that they are diseased when they are really healthy. It is a disease that can kill you within a few years if not treated. 

Unfortunately, one of the treatments is prednisone- a steroid. I happened to have a particularly hard time with it and put on nearly 100 lb in just a few months. Working with a nutritionist, I controlled my eating but given how much pain I was in, I was bedridden. So my weight ballooned. 

Now, I use a wheelchair because my joints are in so much pain that every step feels like someone is stabbing my hips. The chair hurts, too, but at least I can get around in it. 

So yes, I see you trying not to stare at me. I know what you’re probably thinking. But what you don’t see is that I’m fighting for my life. You don’t see that I’m swimming almost every day and probably eating way better than you. All you see is a “fat” person who is too “lazy” to walk. 

Honestly, I don’t owe anyone an explanation. And frankly, I don’t care what anyone thinks of me personally. But I saw a meme earlier mocking a large woman in a wheelchair and something exploded inside of me. “How dare someone judge that person, that they’ve never met, based on nothing more than a snapshot?” 

We do see you staring. 

[justalittlelupie]

Women in history

Reading for prelims has reminded me that the academy and beyond needed to be convinced that studying women, gender, sex, and sexuality in history were important. And not just because they were somebody’s mother, sister, wife, or daughter. 

Oh, and a reminder that this was debated in the open well into the 90s (sex and sexuality even later). 

I owe a great debt to my Feminist Historian foremothers. 

[justalittlelupie]

This is the cost of a year of chronic disease in the US and it doesn’t even include prescriptions. I am beyond lucky to have incredible insurance but who knows what happens to that after the GOP takes power and attempts to gut the ACA. My insurance is through my employer and not an exchange plan. That doesn’t mean that it is safe. The ACA gives ALL of us many, many, MANY protections that didn’t exist before the ACA. It is not *just* insurance for the un/underinsured. It is protection against lifetime limits, from being dropped for being sick, from being denied for pre-existing conditions, from being charged more because I am a woman, the list goes on and on and on.  

Obamacare is not just an abstract idea. It is a lifeline for us. It may literally be the difference between life and death for me. Between being able to work and pay taxes and going on disability (not that there’s shame in that, I just love working and will do anything possible to continue to work). 

The health care system and insurance system need work. I do not deny that. But the solution is NOT to take away all of the protections that protect us and that is where the GOP is heading.

It is my plea to congress that the work on what is broken rather than throwing us all into chaos. 

[brainsforbabyjesus]

I have seen a number of harry potter posts that go something like, “If there was magic and wizards in (country) they’d _____.”  Usually there are also long discussions that go along with these about how each country deals with the statute of secrecy.

And all I can think is, Canada wouldn’t even bother trying to enforce the statute of secrecy. Because what is the point? How would you even know if it was a magic thing or just a Canada thing?

Is that guy just taking a regular old moose through a drive thru to get coffee or is it animagus?

Was that prime minister crazy or did he actually talk to ghosts?

How do you steal 20 000 litres of maple syrup? Trucks or portkeys?

The minister of immigration formally gave Santa Claus citizenship and a passport.

House hippos.

All magic would do to Canada is make the internet about 90% more sure that Canada isn’t a real place.

[nyxelestia]

That would explain a few things.

[cylonqueen]

I’m a Canadian. This is all true.

[milanima]

Canada seems cool.

[justalittlelupie]

I’ve returned

TL;DR I’m back and my body hates me worse than ever. 

Semester is over and I just remembered I have a tumblr. 

Let’s see. I finished this semester on time so that’s a first since grad school started. 

I went to the ER three times this semester and hospitalized twice. Two trips were for bad chest pains and once was because I was in so much pain that I couldn’t even lay down to sleep. 

Still no idea what’s going on with my heart but the pain was diagnosed as central pain sensitization. My body amplifies and hallucinates pain. Go me. 

I’ve also developed non-iron deficient anemia and it looks like my body is destroying red blood cells. I go to the blood doctor in a few weeks. Hopefully we can get something in my body fixed up lol. (Though I’m not really optimistic.) 

On the academic side, I’ve shifted slightly from positioning myself as a historian of medicine to a historian of disability. I’m still studying eugenics in America (my research will specifically be on Michigan) but through a slightly different lens. 

Less than a week left of break. I intend to enjoy it with some good books and bad tv :)

[justalittlelupie]

Using a voice to text device in public... when you study sensitive subjects

I study the history of eugenics. I deal with the history of violence, incarceration/institutionalization, race, sex, gender, and every possible form of dehumanization you can think of. 

I also have RA/lupus/otherfuckerythings so typing is hard. I use speech to text when the typing gets really painful. Unfortunately, this means I really can’t do my work in public spaces. No one wants to be sitting in a coffee shop listening to some chick talk to her computer about euthanasia of “undesirables.” 

But let’s be honest anyway. Those coffee shop chairs are way too uncomfortable for someone like me whose body often can’t tolerate the weight of a blanket... so it’s really just a thought experiment. 

[justalittlelupie]

When parents don’t vaccinate

This is my plea for everyone who physically can to get vaccinated. You are not only protecting yourself and your child, but you are protecting everyone else who doesn’t have the immune system to fight off infection. 

My partner came home tonight and ran into the shower and threw his clothes downstairs. He works at an educational daycare center and one of the kids has whooping cough. Great. 

Of course, we’re both vaccinated but me being immunosuppressed means that I’m vulnerable. 

So now I get to wait and hope that he didn’t bring anything home. 

This shouldn’t be an issue today. It just shouldn’t. 

[justalittlelupie]

First day of school

Was a success. Happy first day of 21st grade to me. 

(I am defining success as: I didn’t fall asleep in my class or grad lounge and I didn’t end up in urgent care.)

[justalittlelupie]

Friends with chronic illness

Finding friends with similar chronic illnesses is like finding a unicorn. You finally find someone who can truly understand and relate, and it’s a huge sigh of relief. It’s a reminder that no, you’re not weak and you’re not a whiner. That this is actually a big deal and that pain and fatigue you feel isn’t in your head. 

Today I had a conversation with one of these friends and we were comparing the side effects of our medicines. Talking about everything from brittle nails to sleeping on your bathroom floor so you’re never too far away from the toilet has become as routine as talking about what we had for lunch (IF we had lunch!) 

I’m still getting used to how my “normal” has changed, but it’s times like this that I’m reminded of just how drastically life has changed for me in less than a year. 

[justalittlelupie]

Someone is being real helpful with my reading...

[justalittlelupie]

Spent most of the day trying to find enough spoons to go to the urgent care. Sigh. 

[justalittlelupie]

It’s a spoonie life for me...

Woke up, went to the dentist for a crown. 2.5 hours later, that was done and I went to the Secretary of State to get my new handicap parking placard. By the time I got home, I felt remarkably energetic. 

I sat down around 3 PM to work on a paper and the next thing I know I’m waking up and it’s 8 PM. 

Every once in a while, I just wish I could peak into my spoonie bag and have an idea of when I was going to hit my wall and crash.