Monday, June 15, 2015

Who Ever Said Pain Was Temporary....Did Not Have RA.

I've been resting as much as I possibly can. I'm taking anti depressants. I meditate almost daily. And, I have been seeing a therapist.Yet none of these things are helping me to deal with my daily pain. I don't understand how my RA can be present every single day. My energy level goes from ok to nearly falling asleep in just a couple hours. I'm trying so hard to be patient with this new drug. It's not like I have the energy to fight it or do anything else. It really is frustrating. I briefly looked into filing for permanent disability. One, the payments are less than half of what I make now. Secondly, I cannot live without insurance benefits. I just need to get better. I feel like I didn't do that much today, yet I am so exhausted. My body hurts and my feet just burn when I stand. Sometimes, I just want to cry out of pure frustration. I'm so tired of being tired. And hurting. How can someone hurt literally every day?

Tuesday, June 9, 2015

But I Don't Look Sick...

The worst is when you're fighting a flare and you feel alone. Feeling like you have to justify the pain because you don't "look sick".  My family sometimes makes comments that make me think I'm faking it. Lately, I have tried to explain that I am faking it. For years, I have faked feeling well. People with a chronic illness want to feel "normal", and often downplay pain. I know that I have done that up to the past year, when I realized that I could no longer mask the pain.

Today, my sister put all this stuff on facebook about me being a freeloader. Yes, I live with my family. But, I do everything I can to help out. Mostly, monetarily. It just angers me because she has no clue what I'm going through. My doctor took me off work for 6 weeks while I receive my Remicade infusions. I still have daily pain. I can't walk much without having to rest or even take a nap. I feel like I'm at the end of my road. Other people were responding to the post she made, not one person having any compassion for what I'm going through.

I have my little sister, that's 15, helping me since she's out for summer break. Together, we cleaned the house and made dinner. The laundry is nearly done. But, my other sister doesn't see that.

People don't need to feel sorry for me, but don't make me feel like I need to defend myself. Or, that I need to show you my pain. It is real. I wish I didn't have RA. Do you know how much I wish I could run? I'm jealous of people that can run.

Saturday, June 6, 2015

Remi Update

It's been 4 days since my Remicade infusion. The day after was so bad. I was so weak and tired, but I did read that many people experienced this. I'm still having pain and stiffness, mostly in my knee. I was pretty tired yesterday. I don't expect this to be a miracle drug, I'm trying to have patience.

I'm hoping to start doing pilates or even light stretching soon. My back hurts from laying in bed so much. I feel like I get tired so fast though. I haven't left the house much because I haven't really felt up to doing anything.




Wednesday, June 3, 2015

Post Remicade Day

Yesterday was my first Remicade infusion. Today, I feel like I was hit by a truck. I feel so weak and my body is so heavy. Last night, I slept 15 hours! I need to take a break now.