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

12 Wednesday Feb 2014

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“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.

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

22 Wednesday Jan 2014

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

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“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.

Where’s Monica?

07 Tuesday Jan 2014

Posted by in Nail Art

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Ohhh boy. My blogging hiatus: 

After I got out of the hospital, I felt awful. 

Then New Year’s came around. I hate New Year’s. This is the depressive part of me because why celebrate the start of a new year when the last two years have really sucked? Thankfully, that mood has passed since the 1st!

 

And the best part! I started working at the animal clinic again and I got an awful cold/dry burn on my hands and three nails broke! I could not even file them down they just broke all the way down in the corners so I had to wait for them to grow back. I would love to say I can finally start painting my nails again!

Unfortunately, while my nails are finally healthy again, my skin is not. I have tried everything to get rid of the patches and to no avail! So I apologize, in advance, for any discoloration on my hands!

 

Hi, my name is Monica and I have RA.

Now It’s a Slide

25 Friday Oct 2013

Posted by in Rheumatoid Arthritis

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Like my favorite childhood game, Chutes and Ladders, I find myself on a spiraling chute. Unlike the game, I do not have any clear idea of how many spaces I am falling behind.

And I am falling behind. Far.

 

Ever since I stopped rock-climbing, I feel like I am on a never-ending slide. It’s too slippery for me to grab the sides and stop myself from falling.

The upsetting part is that I did not stop rock-climbing because the RA made me physically unable. I stopped because of insensitive people’s perceptions of the RA.

In a previous post I talked about what a co-worker told me. That I burdened everyone with my RA and nobody wanted to hang out or rock-climb with me.

I feel alienated at work, I have no desire to hang out with anyone and I am just sad.

 

Rock-climbing was the last thing that made me trully happy. It freed and strengthened my mind, it made me feel good about myself, and it made me feel in control. It was one of those things that was a part of me.

 

I am used to giving things up, I have been ever since I was diagnosed: possibly my career, full-time jobs, biking, bouldering and now I have to pick and choose what I do during the day because I can no longer do it all.

 

This feels different than before. Maybe it’s because it was the last thing that made me happy, and now it’s gone. Maybe it’s the reason why I had to give it up. Maybe I am finally coming to terms with what having this disease really means.

 

Hi, my name is Monica and I have RA.

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

25 Friday Oct 2013

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

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“Is RA contagious???”

 

The silver lining is I can easily separate myself from the people who make me feel worse.

 

I was always one of those people who went into every relationship preparing myself for disappointment.

I know it makes me sound like a holier-than-thou brat but honestly, I realized very early on that people are selfish.

I can count on my closest friends to not treat me differently. They support me and never make me feel bad about this illness. They are my closest friends for a reason. They are the people who I think are selfless, caring, and happy. They are willing to make small sacrifices for me (like instead of going out, staying in and watching TV, etc.) They never ever come back and throw those situations in my face. They are the people I want and need to surround myself with.

Most of the people I have been friends with for more than ten years, some less.

Recently, I deluded myself into thinking that my co-workers and others actually cared about me. Was I wrong. I carried around a false sense of security. They talked the talk, but if the RA affected them they turned and said it burdened them.

Over the last couple of months, I realized that I need to re-adopt the wariness I always had. If someone cannot support me with this illness I don’t need to spend time on them. Sorry, but this is with me for life and I cannot waste energy convincing people this disease will not affect them.

It could take weeks or months to fully gauge how supportive someone can be, so I guess I should thank these people. In just a couple of minutes, with questions like these, they are telling me everything I need to know.

 

Part One

Part Two

 

Hi, my name is Monica and I have  RA.

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

25 Friday Oct 2013

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

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“Is RA contagious???”

 

I am more sensitive than usual, especially given all the mean comments aimed at me recently but this one really upsets me.

I do think it is a legitimate question and it is definitely not meant to make me feel bad. Honestly, it’s not the question but the meaning behind it.

 

Part of the reason I did not tell anyone about the RA for almost a year was because I did not want people to treat me like I was sick. People act a certain way when they know someone is sick, it is human nature. There is the part that feels sorry and there is the part that is wary and concerned about how this affects them.

This question unmasks the selfishness that everyone feels. Some people are just better at hiding it, but everyone feels it.

It is easy to talk the talk, but when it comes to actually supporting someone very few people follow-through.

 

If I tell someone about the disease, they automatically see me differently. It’s like a light switch. The tone of the conversation changes, they treat me like I will break.

 

I have been more lax about who I tell about the RA, but I am still cautious. Do you think I would tell you if I wanted pity?

I don’t want pity! I want support! I need to know that even though I have this sometimes crippling disease, you will not treat me any differently than before. I want to know that I can do and achieve the same things. Can I treat this disease like another interesting fact about myself?

No. Apparently not. This isn’t like a poorly executed tattoo…this is an illness, a sickness. People are innately too selfish to see it any other way.

 

Unfortunately, most people just think about themselves. They don’t see someone who needs support, they just worry about how I, as the person with this disease, will affect them.

 

Part One

Part Three

Hi, my name is Monica and I have RA.

Closed Off

22 Sunday Sep 2013

Posted by in Rheumatoid Arthritis

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The last few days were rough for me. I am not dealing with a flare but somebody told me something that hit me hard.

I spiraled pretty badly and I am trying to regain my composure. It took all of my energy to continue with the 31 day nail challenge because I no longer feel motivated to do anything.

 

Someone from work told me that nobody wants to rock-climb or hang out with me anymore because they all think that they have to make special allowances for the arthritis. I thought I had made it clear that I do not need any help and if I do, I will ask for it. I have become a lot more creative to overcome any disabilities. I very rarely ask for help and never use the RA as an excuse to not complete a work task.

Initially, I did not think too much of it. I am sure it came out in a different way than was meant, but recently I notice it is true.

People no longer invite me on climbing trips, yet still talk about them in front of me. Everyone makes excuses to not climb with me indoors. People always tell me the classic “I am busy for the next few weeks” whenever I reach out to hang out.

I feel like a fool. There are so many times that I can reach out before I look like an idiot.

The only times I manage to socialize with my co-workers is when I just push my presence on them and invite myself. That is not good any way around. If they wanted me to join, they would ask. I mean, I am standing right there.

I have not climbed in almost three weeks and I have no plans to climb in the future.

I am still very wary of who I tell about my disease. No more than 20 people know.  I would not have told them at work but each employee has to pass a drug test.  I had to tell them about my condition.

What I realized is I became sloppy about what I say.

I was always a closed book. I rarely let people into my life and I rarely talked about my problems.

People act like they cared about my well-being so I divulge more information on my condition.

That is interpreted as: I whine too much and am not trying hard enough to change my situation.

 

Oh, okay.

Let me just exercise a little more and maybe my joints will get stronger.

Please tell me again how I should just lower my methotrexate dose so that I feel less lethargic and nauseous.

Why can’t I just increase my prednisone dose to 15mg so that I can function?

Why don’t I just take more pain-killers?

Why don’t I try harder to make my condition less controlling?

 

What symptoms? You seem ok to me…

 

I am tired of explaining my condition to people who do not care enough to understand. Every time I try, people form even lower opinions of me.

When I closed myself off from people: I worked hard, I spoke when spoken to, my opinions were held in high regard.

I need to go back to that.

 

Hi, my name is Monica and I have RA.