Tag Archives: rheumatoid arthritis

Ahhh-Choo! (the musings of a flu shot)

30 Wednesday Oct 2013

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I am conflicted. My rheumatologist wants me to get a flu shot.

I never had a flu shot. I did not see the need. I rarely got the flu.

The shot only protects against one strain of the virus. By the time “flu season” is in full swing there are so many it does not even matter, right?

 

What are the pros?

It may protect me from getting severely ill. Now that I am immuno-suppressed a routine flu can be five times worse, and dare I say it, dangerous.

Last year, the winter holidays were pretty bad. My doctor put me on two weeks medical leave. I ended up with a mix of pneumonia and a sinus infection. My medications (all of them!) stopped working. My father had to feed me my Christmas dinner because I could not even grasp the fork, let alone bring it to my mouth.

I spent at least three days in bed. My father took full responsibility for the pets and brought me my meals.

If the flu-shot prevents all that, I am all for it!

If I had gotten the shot last year, would it have prevented it all? There is no way of knowing.

 

The vaccine will not negatively affect me so there are no consequences.

 

Is it necessary?

Before I was diagnosed I rarely took medications. I did not even take a multi-vitamin because I did not want to get lazy about my diet. Go figure, I now take too many supplements to keep track of.

I know I have very rock-solid health concerns. I should get the vaccine. Still, part of me feels if it is unnecessary I should not get it.

It will not hurt to get the flu shot and it might (no promises) keep me healthy through this winter season…

 

I know the responsible course is to get the vaccines.

I am still on the fence. Too big a part of me says it is totally unnecessary.

 

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

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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.

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

23 Wednesday Oct 2013

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Disclaimer: I don’t really classify this as “dumb”.

 

“Is RA contagious???”

 

This is not a dumb question but it is a very silly one.

It is a disease. Some diseases are contagious. However, RA is rheumatoid arthritis.

 

Is osteo-arthritis contagious? 

During a flare, just by standing near someone can I pass on my confused immunity? Just by sneezing can I contaminate the air with my RA inflammatory anti-bodies?

Okay, so even if they did not know this was an auto-immune, I can’t even imagine a way that arthritis could be contagious. Suggestions?

 

Just taking one second to think about what the name of the disease is should be an indicator, on its own, that this illness is probably not contagious.

This question leans towards not having any knowledge of RA but it is a rather strange question nonetheless.

 

Part Two

Hi, my name is Monica and I have RA.

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

17 Thursday Oct 2013

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“Why don’t you find another way to get out of bed?”

 

Well that is a novel idea, is it not? Why don’t I just find another way to do something.

Thank you for the great insight into my life. I did not even think about trying something different.

I am perfectly content wallowing in my self-pity of losing my abilities.

I am perfectly content to just let my auto-immune defeat me.

 

Am I happy just laying in bed until my body allows me to get up? Have I not considered other solutions to this dilemma?

 

Furthermore, I do not like the reminder that my body fails me.

I work very hard to keep my illness under wraps. I try very hard to remain able-bodied.

Sometimes, I cannot help it. Sometimes, I cannot get out of bed.

This is what I have to work with.

 

Part One shows why this is not ok to say.

There will be no third part. I find this comment extremely rude and cannot find any silver lining.

 

Hi, my name is Monica and I have RA.

Too Sensitive (…To the Side-Effects of Prednisone)

12 Saturday Oct 2013

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The most annoying part about living with rheumatoid arthritis is dealing with medication side-effects. This is the reason I am writing a post at 2am when I have to be awake for work at 7.

Prednisone is a life-saver. It takes down inflammation in my joints quickly and is the “quick-fix” of all my medications. What I mean by that is I can easily increase the dosage to aid me through a flare.

The problem with that is it has the worst side-effects.

I rarely go over 12mg of prednisone. I get awful insomnia, bad anxiety and sometimes I just want to drive my car into oncoming traffic.

I would rather take more Tramadol than prednisone.

Recently, any change in pred causes insomnia. Whether it is 9mg or 10, whether I increase or decrease, it does not matter. I get insomnia.

 

For months I had difficulty falling asleep. My mind raced with thoughts about RA, nerves about my future, etc.

I finally overcame that. I channel thoughts away from my body. I meditate and allow my mind to blank. My limbs grow heavy and I roll my spine up and down to release any tension. I then lay flat on my back and count down from five as I breathe in and out. I push stray thoughts out of my mind.

I drift to sleep.

 

I do not stay asleep.

 

I used to take sleep aids: Ambien, Benadryl, Remeron…but I had more bad side-effects than the good ones.

Each day is different when it comes to how much prednisone I take. I increase a little when I have work or exercise. I lower on the days I stay in and rest.

My doctor wants me on 8mg but on work days there is no way that is enough.

Before the insomnia whenever I changed prednisone doses I would either shed weight or gain it, and I would always get “moon face” or noticeable puffiness in my face.

 

 

Hopefully, this is just a phase.

 

Hi, my name is Monica and I have RA.