Some days

It’s no secret I’ve been struggling lately.

My body is warring with me and some days, like yesterday, I just feel defeated.

I woke up exhausted but I had a conference call with one of our consultants so I
pulled myself out of bed, eventually and made it to work on time but just barely.
I knew it was going to be a tough day but I couldn’t have foreseen what actually
happened.

Before the conference call I popped some Tylenol to help with my headache/pain
(this is on top of all the other medication I take daily and weekly). Once the call
was over I returned to my desk and then made a trip to the bathroom. I could
feel my face getting hotter and hotter. Looking in the mirror, I could see I was
flushed. Now my complexion means being pink isn’t uncommon but I was red in
the face like a tomato. Every second felt like an eternity as the pain in my TMJ
intensified. I composed myself, walked to the first aid room in search of a
cold pack. I took it to my boss’ office – I just wanted to let her know I needed a
moment to go take care of myself.

She was on the phone when I walked in an sat down. She ended her phone call,
looked at me and I started to bawl. I was so overwhelmed. I was in so much
pain. I was so exhausted. I couldn’t stop. She quickly got up and closed her door
and offered me a tissue. I eventually blubbered my face was hurting. She spoke
softly to me, got me a cup of tea and let me calm down while I iced my face in
her office.

I appreciate her compassion and her understanding. Currently, I’m taking my
8th sick day since January. I’ve never done this before in my life but then again,
I’ve never struggled with my health the way I am now.

I can’t explain it but my jaw hurting due to the arthritis is emotionally one of the
most difficult parts of this experience for me. I’ve been icing my hands, wrists
and ankles for months now. Yes, there was a certain amount of being upset but
having to ice my face, I just find it devastating and often it has me in tears. Yes,
part of it is the pain but mostly it’s a type of grief I’ve never experienced before.
My *face* hurts.

I’m not new to a chronic illness, I’ve suffered from depression for the last 12
years. Off and on my mood has always been changeable. But this is different in
so many ways.

So far we haven’t found the right combination of drugs to help me. The best
drugs available to RA suffers are biologics. Unfortunately, they are expensive,
averaging about $20,000/ year. Even with my health insurance at work,
$4,000/year is a little too steep for me to handle on a single salary. So we try
other combinations instead.

Beyond the expense and believe me, my pharmacist now knows my face now that I’m
there so often, it’s the limitations I am struggling with.

I’m left-handed in that I write with my left but it’s my right I use for almost
everything else. These days, however, the inflammation is starting to cause that
to change. My right hand, wrist and shoulder are becoming weak due to the
inflammation. Yesterday, lifting a regular drinking glass became too much, I had
to use my left hand instead. I’m thankful I have enough dexterity to switch as
needed but I worry about how long before too much damage is done due to the
inflammation. How long until I can’t do other things.

My rheumatologist, is concerned that my condition keeps spreading. Each visit
with her has seen me add more and more joints to those that are inflamed and
tender. It’s not slowing down. And to think it’s only been 8 months since the
onset. The only major joints that aren’t involved at this point are my hips and
my knees though I have started to notice some stiffness when I climb the stairs
to my apartment.

Part of the reason I don’t blog much anymore is because it’s too painful to type
by the time I get home from work.

Some days I pick and choose what I have energy for. If I cook, there’s a good
chance I don’t have the strength to do the dishes.

Some days holding my phone is too painful.

Some days brushing my teeth is a chore, even with my electric toothbrush.

Some days styling my hair is an impossible task.

Some days I crawl into bed as soon as I get home.

Some days I think it’s never going to get better.

Some days I feel like I can’t keep fighting.

Some days I have no other choice.

Some days I am scared.

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2 thoughts on “Some days

  1. Ugh, I just want to squirrel you away and look after you for a few weeks. This sounds absolutely terrible and I am so sorry that there isn’t anything else I can do except tell you I love you and that I’m here whenever you need me. I am hoping against hope that the medical staff you see can find you something that works more for you.

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