Tag Archives: rheumatoid arthritis

Believe or Not Believe

16 Monday Sep 2013

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I am so resentful of my condition that it has become self-loathing.

I would not say that I hate myself because I do not.

The arthritis is just a quality that I dislike about myself.

If there is a quality about myself I do not like, I can actively change it.

This is not the case with the RA.

 

And that is where that resentment comes from.

 

People who know about my condition sometimes treat it like a personality trait. One that I can turn on and off like a switch.

If I am able, nobody minds.

If I am disabled, it is my fault because I am not trying hard enough to fight it.

 

Auto-immunes do not work like that.

 

There are a handful of things (heck, I can probably count them on one hand) I know for certain flare me up. Bouldering (shorter climbs without ropes), for example, is one of them.

I make that perfectly clear.

However, people still assume I can do it. Or I can do it in the future if I work on it.

Overcoming RA is not like practicing a skill and getting better.

 

It is a barrier that I have to live with; with the understanding that I am incapable of certain activities.

 

But somehow, that is my fault.

I do not understand that rationalization.

How is this my fault?

This disease is not all in my mind.

 

What I begin to realize is people do not understand this. They assume I “cry wolf” because they cannot see the symptoms.

How I feel is based on my opinions alone.

Maybe when my joints start to deform people will finally realize that there is a lead-up. Joints do not just disfigure overnight.

 

That seems like a very, very dire price for me to pay so people believe me.

 

It would be easier to find new people to surround myself with. People who do not make me feel worse about myself. Unfortunately, I hit this block everywhere I go.

Even from my own family.

What I begin to realize is I am alone in this.

 

Nobody sees me during a bad flare. I hide away and cancel all plans.

Just because people see me during a controlled phase does not mean that I am always like that.

And what really gets me, if I do venture out when I am feeling unwell, people respond “You could have stayed home, we would have understood”.

Don’t lie.

What they understand is that I am making excuses and hiding behind my disease.

 

Anyone who knows me, please, list three times I used my disease as an excuse.

I dare you.

 

Just because there are people out there who have control over their auto-immunes does not mean I do. I am still new to this diagnosis. I know it will take time to stabilize.

 

I just wish other people knew that too.

 

Hi, my name is Monica and I have RA.

Pressures

12 Thursday Sep 2013

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Resentment is an interesting emotion.

It reeks of self-hatred but does not register in the mind as such.

It builds a pressure within the mind that cannot be released by positive influences alone.

It burrows like a termite that once inside it builds its nest with strength and silence.

Resentment goes undetected until the structure gives way.

It grows quickly.

All it takes is one instant, one second, one thought for it to take root.

 

Where does it start?

Is it regret stemmed from actions?

Is it self-loathing?

Or

Is it a rationalization when events do not go our way?

It purely a selfish emotion but I cannot help but feel it. The RA has changed my perception:

 

I resent able-bodied people.

I resent myself for having this disability.

I resent the people who know about my condition and still blame me when I am unable to complete a task.

I resent the people who say “But you seem ok!”

Are you kidding?!

“Seeming ok” is a struggle.  Just because I appear healthy does not mean that I am.

I resent myself for not making a bigger deal of my situation.

 

Do resentment and regret go hand in hand?

I feel resentment because of my own formed opinions. I feel regret over actions that I find embarrassing or did not end up the way I wished them.

 

I have control over regret. This is not the case with resentment.

I feel resentful of my condition because sometimes I cannot control it.

 

Hi, my name is Monica and I have RA.

Why So Important?

08 Sunday Sep 2013

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Lately, I have not been able to rock-climb as much as I would like. Each time I scale the wall, I fight a flare that same evening.

Not too long ago, I climbed and experienced no consequences. It has been weeks since this last happened.

When I was first diagnosed, I not only fought for ability, I also fought for my future. I had a pre-veterinary medicine concentration in college. I planned to go to veterinary school. I never wanted to be or do anything else.

When I could not keep my symptoms under control, I realized I may have to give up on my dream, even though I could not imagine doing anything else.

I still struggle with this every day. I still work towards that same goal. Every day I fight to go to vet school.

Regardless, I know in the back of my head (that little demon in my mind) I may have to give up on it.

 

I refuse to let that happen with rock-climbing. I already gave up my passion, I WILL NOT let it happen with my love.

Given the state I end up in after I rock-climb, it may be doing more harm than good. Still, I cannot let it go.

Why?

It is one of the few things in life that makes me feel good, mentally. I get up on the wall and the entire world melts away. It is just me and the wall.

I love that. I love solving puzzles. I love that I do not need a lot of muscle or strength. I love that that I rely only on myself and my body.

I climb with a belayer but when I am up on that wall that person is only there to make sure I do not fall. Every climber completes moves differently. There is no one way to grab a hold, stand up on a toe, hook a heel, or balance the core.

The most important part of climbing to me is not the actual route but the mental state it puts me in. I am solely focused on one thing. If my mind wanders, I will fall.

This is truly the only time I forget I have rheumatoid arthritis. I cannot remember that I have this physical disease. It paralyzes me on the wall. I have to think I am healthy and capable of this activity.

This is the only time I think this way. RA follows me everywhere else I go.

I cannot let go of rock-climbing. Not just yet. I cannot lose the last thing that makes me, me. My after-climbing flares are disabling but, to me, that is a small price to pay.

 

Hi, my name is Monica and I have RA

What a Difference an IV Makes!

06 Friday Sep 2013

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I should not be as excited as I am.

Two weeks ago, I switched medicines…again.

Well, not really.

I took weekly Orencia injections. They worked well. I woke up feeling absolutely healthy.

Most days, I totally forgot I had RA.

Regardless, over the last month any strain on my joints resulted in a flare. Each flare lasted days.

Up until this point, I tried most of the biological immuno-suppresants except for the monthly Orencia IV infusion.

Supposedly, the intravenous formulation worked differently than its subcutaneous counterpart. The IV was 500mg versus the 125mg self-injections.

When I started the weekly shots, I had to sit for the 500mg infusion. On the same day I took one of the sub-q injections. It totaled to 625mg to kick-start the results. I still remember when I sat for that IV I felt good within days. I went for three hour hikes and I rock-climbed without breaks.

When I sat for my first monthly IV after the switch, I worried.

I did not feel good. I still flared and tired easily.

Suddenly, two weeks after the first IV dose, I felt great. I lowered my dose of prednisone and still managed to go about my daily life without hassle. I did not feel as lethargic or painful.

I do not know what happened. It was not a gradual change. I just woke up one morning feeling awesome.

I still have two weeks before my next dose. I hope that the effects do not taper off towards the end. Hopefully, the medication caries me through the entire month.

We will see.

I am trying to deflate my excitement, after all, these medications work for a time before they quit on me.

I can not help but feel optimistic. If I manage the symptoms now the disease will be totally manageable in the future.

Hi, my name is Monica and I have RA.

Image Displacement

04 Wednesday Sep 2013

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For a few months I have had image displacement problems. I hold a conversation with someone and all of a sudden they shift backwards a foot or two. They do not physically move back, they just seem farther than they appear. I also have problems with poor eye focus. My eyes lose focus and I have difficult re-focusing them even with constant blinking.

I visited my eye doctor today and he told me that prednisone can affect my eyesight. I do not have glaucoma or cataracts, thankfully. I have moderate dry eye. There are “dry spots” on my eyes. My eyes are no longer producing enough tears to keep the tear film moist and stable. This contributes to image displacement and poor eye focus.

I need new contact lenses but because I could not focus my eyes, we were unable to find the right prescription.

I now take artificial tear drops two to three times a day. Hopefully this will put off any further dry spots and alleviate the symptoms I already have. I also have to go back to see a contact lens specialist. I had no idea those existed! Though, I think most of it is just a ploy to make more money from extra visits.

I always think I am tired and I am just seeing things but it is nice to know there is an actual reason for my symptoms!

Hi, my name is Monica and I have RA.

Smile Like you Mean it

30 Friday Aug 2013

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To see the accompanying nail art click here.

Today I rock-climbed. No, let me re-phrase that. Today I rock-climbed well.

I climbed three 5.10s. Specifically, a 5.10a, a 5.10b, and a 5.10c. I climbed all three climbs from top to bottom without falling. I “sent” the climbs.

I knew sending the climbs was not important. I was just happy to be on the wall. I was not going to lie: I felt pleased. I was proud of myself. I had the strength, agility, and mobility to climb quickly and efficiently.

I climbed on and off for the last couple of weeks. There was a length of time when I could not climb at all because of the flare.

Before, every time I had a flare I lost my strength. I had to work my way back up the difficulty level of climbs. I was ecstatic when I realized I had not lost all my strength. Okay, so my fingers cramped up more than usual and I forced myself to stretch farther with my legs and shove my arms above my head but I was able to do it.

And sure, I am paying for it now. I am unable to climb the stairs properly, my elbows and shoulders lock, and my fingers cramp as I type. It is so worth it though.

When I was a junior in high school, I suffered through a bad bout of depression. I barely scraped by that year academically and emotionally.

Looking back, that year was a blur but there was one thing I will never forget.

My climbing coach pulled me aside one day and said to me, “Monica, I don’t think I have seen you smile at all this year. I miss your smile, it brightens my day. I think it brightens most people’s day.”

Today, for the first time in weeks, I genuinely smiled and laughed.

I know the difference between a forced and real smile. When I smile, for real, I feel it in my entire face. My cheeks get red, my eyes crinkle and light up. I show my teeth. My laugh lines go deep. I feel happy.

When I force that same smile it feels fake. People see right through me. They know it is a show.

I hope that because of this one smile everything will look up. This one smile is the crack I needed to find in the tunnel wall. The wall is weak around the crack.

I think I can push out now.

Hi, my name is Monica and I have RA.

Nail Art: Strawberries and Cream

26 Monday Aug 2013

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I was painting my nails when I was reminded of the snacks my mother used to make me after school. She suffered from Lupus and kept a healthy diet which I followed. I rarely ate ice cream or cake. I never had soda or any other carbonated beverage. I even drank fresh vegetable juice. 

I never had a big sweet tooth but my favorite after-school snack was strawberries and cream. My mother sliced strawberries in a bowl of milk and sprinkled a little sugar on top. 

Zoya "Kissy" and SerumNo5 "Happy Special Day" over China Glaze "Fuchsia"

Strawberries and Cream

I started with two layers of China Glaze “Fuchsia”. It is a great bright pink. It is a little too bright for my skin tone but I think it is pretty anyways. The formula is thin but not runny. It did not streak on the nail even on one coat.

I added a coat of Zoya “Kissy”. It is a dense pink shimmer suspended in a clear base. There are a few shiny silver rectangular glitters as well. The formula is smooth and the pink glitter is dense. It is very difficult to find any of the rectangular pieces, even after shaking the bottle. Within seconds they collect at the bottom.

I can not help layering Serum No5 “Happy Special Day” over everything! Especially if I am not doing any nail art. I have ranted about this polish here.

 

My diet has definitely changed since my diagnosis: I stay away from starch, cut out most junk foods and lower my lactose intake. Even so, I will always enjoy my strawberries and cream.

 

Hi, my name is Monica and I have RA.