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Category Archives: Dumb Sh*t People Say Series

Dumb Sh*t People Say – RA Edition: Series Six

08 Tuesday May 2018

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

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“Do more yoga”

 

Disclaimer: I don’t like yoga or meditation. I am too high strung for that shit.

 

Most people have never heard of an autoimmune condition because it is an invisible illness. This means that unless they have one themselves or have a passing familiarity with it (a close friend or family member has it) the average person does not know what Rheumatoid Arthritis is.

For this reason I try not to judge people and I only get annoyed when they start advising me on stress. “I started yoga and stopped getting sick! It will definitely help with your autoimmunity!”

There are two things wrong with this…

First, stress does not cause autoimmune conditions. It can effect the intensity of flares but does not cause the disorders. (If this were the case then my entire high school class would have one).

Second, just because the word autoimmune contains ‘immune’ does not mean that my condition suddenly gets better when I’m not sick. Yes, my immunity is involved but not in the way most people think. My immunity is confused and instead of attacking bacteria and viruses, it is going after my cartilage instead.

I’m not saying stress does not play a role in my RA because it does, to some extent. It does not, however, completely dictate whether I experience symptoms (or not) and no, yoga won’t cure me, but thanks for the suggestion.

 

Hi, my name is Monica and I have RA.


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Dumb Sh*t People Say….Part One

21 Saturday May 2016

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ 4 Comments

Tags

autoimmune, flare, rheumatoid arthritis

“I heard exercising cures RA. You should just do more of that!”

And I heard if you shove your head far enough up your ass you can see your stomach!…

Okay, so that is a little harsh. But…not really.

 

If you do not live with chronic pain or a physically disabling autoimmune you can’t imagine what it feels like. You can’t google Rheumatoid Arthritis and immediately understand what it means to have it. You don’t know, well, until you know!

 

Long ago I stopped giving people the benefit of the doubt. Many say I’m too severe and expect too little of them. But what I’ve learned is people just want to sound intelligent. They love to sound like they know what they’re talking about. It’s human nature to be superior. Lao Tzu, the founder of Taoism, once said “Those who know don’t talk. Those who talk don’t know”. The above statement is a prime example of this.

I realized that when people talk it is not because they care but so they feel better about themselves. They think that if they look up a few facts on the internet, regurgitate the information I give them, they sound caring. In reality, they just annoy me.

Yes, you’re partially right. Exercise does alleviate symptoms of RA, however, too much of it can have the opposite affect and do more damage than good. Why? Too much motion and repetitive motion exacerbates inflammation around the joints, causes the immune system to react and attack. I probably don’t have to mention that there is no cure for the keyword: chronic autoimmune condition. So, no, I can’t just exercise the RA away but, gee, thanks for trying.

 

Hi, my name is Monica and I have RA.

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Dumb Sh*t People Say: RA Edition – Series Five, Part Two

12 Wednesday Feb 2014

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

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depression, dumb shit people say ra edition

“How are the aches and pains?”

 

There are two sure-fire ways to see who your true friends are: death and disease.

Okay, maybe not death because everyone and their dog will offer condolences. However, disease never fails.

Everyone will say “That’s so awful, please do not hesitate to ask me for help.” I am not going to get into why this comment irritates me (another series!) because only a fraction will follow through.

Ever since I was in the hospital, I saw the difference between true friends and those who said they were. There were the people who showed up at my doorstep, unannounced, with dinner. They were the ones who sat with me while I snoozed and got antsy from laying down all day.

Then there were the people who “freaked out” but did not check in on me for two weeks. FYI: If I was not better after ten days of antibiotics, I was probably dead.

 

These are the people who do not necessarily believe I am ill. Sure, I make jokes and poke fun at my illness. That is how I cope. I have to find it funny or it will destroy me. But what upsets me most is that people belittle my situation because of that. Do you think it is easy watching my body attack itself? Destroy my mobility, my eyesight, my organs? Is it that hard to believe there is something serious under all the jokes?

Being in the hospital was scary…no, let me take that back, waking up that morning, not being able to move from weakness, my head pounding so badly I could not even lift my head, my body sweating but shivering, not feeling pain but knowing something was terribly wrong….that was scary.  When I finally managed to fish my thermometer out of my bedside cabinet and put it under my tongue, I read the final verdict and freaked out.

102.5 degrees?! I never had a fever so high, even as a child. This was serious. My body was no longer capable of fighting infections, lowering body temperature, or keeping itself healthy. A fever this high, just like in cancer patients and all immunosuppressed patients, was life-threatening.

What was I going to do? All I wanted to do was lay there and sleep, close my eyes and hope it went away. I went through the motions, I called my doctor, I called work. I was all set to fall asleep again when my rheumatologist called me and said I had to go to the doctor. I was too weak. He told me I could not stay like this. I had to call 911 and get to a hospital.

I was lucky. It was only a sinus infection: one I already knew I had and was on antibiotics for. Annoying, but it eased my mind. Now all I had to do was recover.

I am not saying every person who knows about my condition needs to google it and understand what I am going through. I am saying these people should not bother to ask about my health if they roll their eyes when they see visible symptoms. Initially they seem caring but when it comes down to the wire their true colors show. They get annoyed, they act like my condition is a burden on them.  I am “crying wolf” or “asking for attention”. This is absurd! When my condition is visible I am suffering. When my condition is invisible, I am suffering. But when they finally notice, these people turn away.

I do not tell people because I want them to feel sorry for me or give me special treatment. I just do not care. I kept this disease a secret for almost three years! Now, it seems pointless to keep it under wraps.

It is lonely knowing I cannot count on anyone else. This comes with the autoimmune territory. It is lonely knowing nobody wants to understand what I am going through. I am alone, I only have myself. I am okay with that. My mother taught me how to take care of myself, be self-sufficient.

I may not need anyone, but it does not mean I do not want to feel connected to people.

After my hospital stay, I felt completely disconnected. I just saw blurs of happy people who just saw the one day stay (nbd, right? I’ve been in the hospital longer) and having to take  time off from work (lucky duck, I wish I could take time off work for being sick!)

I am glad this was a joke to those people. I am glad it was no big deal. I am glad they think it is an excuse for me to pull out when I feel like it. Here’s the truth: It was a big deal. It was my health. It was one more step towards my body falling apart: my body cannot take care of itself without assistance.

 

But, as my best friend says, I do not have to be around those people. I can find new people to hang out with. People who do not know about my condition. She says it sucks to know there are few people in my life who will stick by me but I cannot control what people think of me, I have to live my life to the best of my ability, believe in myself and distance myself from those who do not. My best friend will laugh and call me a “hater” and maybe it is true. I sometimes find myself having very little faith in the human race. People disappoint me because they are superficial, flaky and ingenuous.

After all, words without actions are meaningless, right?

 

Hi, my name is Monica and I have RA.

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Dumb Sh*t People Say: RA Edition – Series Five, Part One

22 Wednesday Jan 2014

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ 3 Comments

Tags

depression, dumb shit people say ra edition, rheumatoid arthritis

“How are the aches and pains?”

 

This is not “how are you feeling?” this is “how are you feeling, in your own head?”

I have touched on people’s “suspended belief” before in the first series, and it still holds true. More often than not, people do not want to delve any deeper than words. The cannot help but think most of this disease is me. On the surface, they care but without the action. They look like good people without working to back it up.

 

Then there is my “inner demons” theory. How much of this is in my head? If people cannot see me struggling maybe I am giving this disease more influence and in turn it is making me worse. Instead of thinking I wonder what I can achieve today I think I will achieve everything; I can beat the RA.

Unfortuantely, as anyone with an autoimmune knows, this is not how it works, as much as we wished it is true. Thoughts have a power over us but not so much so as to change an entire disease.

Over the last few months, I realized being ill is the best way to see who my true friends are. Never once did a good friend ask me “how are the aches and pains?” They see when I struggle and they help. They express concern, they check in. They are aware.

People who ask “how are the aches and pains?” rely on words. They appear considerate while fueling their own suspended belief in me.

 

Hi, my name is Monica and I have RA.

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Dumb Sh*t People Say: RA Edition – Series Four, Part Three

27 Friday Dec 2013

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

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dumb shit people say ra edition, flare

I thought I had posted this and turns out I never did!! Yikes!!

 

“Don’t you feel lazy when you have to sleep most of the day or rest?”

 

Well, the silver is right in there. You may feel lazy for taking a rest day and will not take one, while I can take one and not feel bad about it!

Sure, this is different from playing hooky from work to watch the game at a bar, or sky-diving, or taking time off work to do something fun. I cannot do anything too physical. But, so what? I get to lay in bed, read, Netflix, watch movies, and sleep!

And that sounds like a pretty good day to me!

 

Hi, my name is Monica and I have RA.

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Dumb Sh*t People Say: RA Edition – Series Four, Part Two

19 Tuesday Nov 2013

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ 6 Comments

Tags

dumb shit people say ra edition, flare, rheumatoid arthritis

“Don’t you feel lazy when you have to sleep most of the day or rest?”

 

It is so not okay to say this to anyone. Ever.

I do not need the reminder of how crippling RA is.

This is not for fun and games or to play hooky from work (Though, I have been lucky in I have not missed work because of it).

Sometimes it is the only way to take down a flare!

 

If I cannot get out of bed, brush my hair, climb the stairs, and I am already on the highest, safest dose of medication, how else do you expect me to take down a flare?

Why is this different from when you are sick with the flu?

It’s not.

 

I think people are incredulous because sleeping all day it is for “sh*ts and giggles” and laziness. To them, it is a choice.

Not for me.

For me, it is a necessity.

I cannot think of anything less fun than feeling more dwarfed by my auto-immune on the days I am chained to my bed.

 

When I bow out of plans I only say I am not feeling well. I no longer mention anything about rest.

People cannot imagine that it takes this much sleep to recover from a flare, so the first thing most people think is I am faking or trying to get out of something.

 

No. 

 

I need to do this to be functional.

And no.

 

I am not lazy.

 

Hi, my name is Monica and I have RA. (And in order to manage it, I take “sleep” days.)

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Dumb Sh*t People Say: RA Edition – Series Four, Part One

09 Saturday Nov 2013

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ 4 Comments

Tags

dumb shit people say ra edition, rheumatoid arthritis

“Don’t you feel lazy when you have to sleep most of the day or rest?”

 

To see the accompanying nail art, click here.

 

I did not. Until you said that. And now I am angry at you.

Seriously? Obviously, you are able-bodied. The problem with rheumatoid arthritis is I do not know if I am going to flare up or when.

What I do know is if I over do it, I will flare up and I have no choice but to rest.

Sometimes, medications just do not cut it. I have to sleep. I have to stop, let me body rest, and re-coop.

Sometimes, a nap is enough to keep my energy levels up and pain levels down. Sometimes, I have to take more than one nap a day. Sometimes, I have to sleep all day.

Medications are great, they make me feel great….or greater than I could feel. However, sleep is the best medication.

 

So, what is the difference between you sleeping all day when you have the flu and when I have a flare? Nothing.

So, why should I feel bad when I rest?

 

I will not lie. I wish I did not have to nap as often as I have to. I have things I want to do on my days off from work, I have errands to run, a life to live…

It is just one of those unfortunate “side-effects” of having an auto-immune.

And you know what? If taking a “rest day” ensures I can function for two or three days at a time, I am going to take it. And not feel lazy.

 

Hi, my name is Monica and I have RA.

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