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22 Sunday Sep 2013

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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.

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.

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.

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.

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The Power of a Good Book

25 Sunday Aug 2013

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“I wish it need not have happened in my time,” said Frodo.
“So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

In my first blog post I mentioned that I hoped writing online would prove therapeutic to me. I can honestly write down my feelings and have a conversation. I can express my thoughts to an audience who does not have to respond or judge.

After I posted my last entry I felt a great relief wash over me. I wish I had known this two weeks ago. I keep a personal hand-written journal but it is different. The only audience is me.

After the relief wore off I thought clearly about the things that make me happy. One of them: Lord of the Rings. Reading the trilogy brings me a sense of calm. I love to read but that is the only book capable of transporting me into another world. A world I can imagine myself in, a world I want to live in. No matter what is happening in my life, I know Lord of the Rings will carry me through.

The book not only paints a vivid picture but is full of quotes that give me peace and hope. One of my favorites is from The Fellowship of the Ring. I think it fits my situation perfectly. It lifts me up and makes me want to work through my issues.

I know I have to find a stable coping mechanism for my disease. It used to be climbing but I am not always able to do that. It will take some time and I am sure I will hit blocks along the way. I just need to remember that there are soft pieces of wall I can break through without harming myself. (A reference from my last post).

Hi, my name is Monica and I have RA.

Stuck in the Tunnel (August Blues, Part Two)

25 Sunday Aug 2013

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I feel like I have been stuck in a tunnel for two weeks: I am unmotivated, flared up, and depressed. I think of something to do to lift my spirits and I hit the wall. I turn to the other side in hopes that I find something else and that wall is just as close and concrete. I am on the same path forward but the end of the tunnel is so far.  I am unhappy on this path. It is not what I want for my life. I can turn 180 degrees and get out that way, but I am going backwards. That is never an option.

The tunnel analogy falls apart at the end, but I hope that other people with autoimmunes understand. Sometimes, it feels like rheumatoid arthritis shuts me in and I only have one path available to me. I want to break out. I want to use my shoulders and elbows to break through the walls. Unfortunately, I do not have the energy.

Before this diagnosis, whenever I felt trapped I would barrel myself through the wall. I would break myself out of my rut. I could do anything I wanted, be whatever I wanted. Now, I do not have the energy, mentally or physically.

This probably goes hand in hand with my August Blues. I know my mood always dips, but it never dips this far. Every time I find an option, I feel dwarfed by the RA. Maybe I am not trying hard enough to break out. That is the problem with depression, though. It zaps my motivation to get out. I am ok with wallowing in my own self-pity, as awful as it makes me feel.

For now I will walk this one path. Hopefully, I will find a soft piece of wall.

Hi, my name is Monica and I have RA.

A Little Too Circular

21 Wednesday Aug 2013

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Last night, my dad ended up in hospital. His blood pressure sky-rocketed to 212/85. He has a tendency to hypertension but his pressure has never been that high before.

Yesterday, I had a doctor’s appointment. We decided that since I will be in the area for a few more months we should try sitting for the monthly Orencia infusion in lieu of the weekly subcutaneous injections. Well, first off: Yay. I am not starting from scratch which means I should not feel worse for the time being. Still sucks though. I would hope by now my medications would stabilize.

Even though this is not the worst news it still worries my father. I think that worry translated into his famous “cluster” headaches which in turn caused his pressure to hit the roof.

I work in the medical profession as a veterinary technician. I keep my head during an emergency and I stay calm until I need to worry. Honestly, the first thing that RA has taught me: there is no such thing as a personal emergency anymore.

How long am I going to stay out? Do I have food and water? Do I have enough to take my medications at the right time? Do I have the most important medications in case I need to take them away from home? Do I have my insurance cards? Do I have my list of medications?

I never know what course my autoimmune will take or how quickly so I need to be prepared at all times.

I kept a cool head. My dad knew to take his blood pressure medication immediately so thankfully his pressure began to fall. I stayed with him while he was in emergency which was thankfully only a few hours while they ran blood tests.

When I got home, I fell asleep immediately. When I woke up this morning, my knees and hips were more stiff than usual and I had more difficulty completing my normal tasks.

I have to cook the dog veggies today so in order to do that, I need to rest up. Also, if I want to be functional tomorrow, I need to take it easy today and not exacerbate my current condition.

Round and round it goes, my health takes a dip so my dad’s takes a dip which means mine will inevitably take a dip as well.

Just for Fun: Marmalade exhibits a circle!

Hi, my name is Monica and I have RA.