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?

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.

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.

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.

"Normal" People Are Lucky.

I am still waiting for the results of my sleep study. I know my symptoms and have been dealing with them for months.  Things are only getting worse. Most days I'm really tired, but the days that I fall asleep driving are the worst. I am pretty convinced that I have narcolepsy. If it's not that, it definitely has to be some form of neuro disorder. It is NOT normal to fall asleep driving to work after 9 hours of sleep. There is so much anxiety while waiting for these results. I don't want to lose my license. I have no idea how they treat this. AND, I'm set to start my Remicade infusion on Tuesday. I feel like there are so many things piling up against me. I'm barely holding on. I'm pushing myself at work, yet they have no idea what I'm going through. I just want to cry, and feel sorry for myself. I've been to my doctor 3 times to tell him how depressed I felt. This last time, he finally prescribed something for me. How do people live like this? And function? My only goal is to make it through the day not falling asleep, and to have controlled pain.

My Everything Hurts

I am totally and completely at the end of my rope. I was on my feet all day yesterday for work. Each week, I know that I'll feel bad on Thursday. But, add that to my already ongoing pain. I'm done for.  My everything hurts. My knees are the worst. The ache that I feel can't be compared to anything else. I seriously don't think I can take much more. It's affecting me so much mentally.

Today, we had a meeting scheduled from 12-5 at work. I only lasted at work until 11. The director made me feel really bad for leaving. She said everyone was trying to get out of the meeting. I tried to explain that wasn't the case. People can clearly see me limping around. I had to defend myself and explain how and why I felt so bad. Near tears, I stood there and told her how I was struggling physically. I felt like I was begging her to go home. Nobody should have to do that.

Tomorrow I already have a appointment scheduled to see my primary doctor to talk about my depression. He seems to ignore it every time I bring it up. This disease and pain are bringing me so down. I plan to talk to the doctor about taking me off work for a medical leave for a few weeks. At least until I get stable on Remicade-that I start next week.

I've taken 3 Norco's in the past 8 hours. That's a lot for me. It hasn't changed the pain much. I don't know what else to do to help myself beside laying in bed cuddled in blankets.

Oops, I Did It Again

I honestly don't mean to piss people off. Maybe I should come with a disclaimer. The other day, my friend had asked me to go to a street fair. I said I hadn't been feeling well, but I'd like to go as long as I felt up to walking. Yesterday was a pretty fantastic day, but I did take advantage of all my free time by resting. This morning, I went to the cemetery to  take a flag to my dad for Memorial Day. I sat on his grave for almost 10 minutes. Mostly day dreaming, taking in the sun, and drinking coffee. When I was leaving, I felt really sick to my stomach. Maybe the coffee? So, I stopped drinking it. I came home and I've been on the couch ever since. I texted my friend this morning to say that I thought it was best that I just rest. It took a long time to get a response back. And, at that, it was a one word "ok". I didn't want to apologize, because I really didn't feel like it was my fault. I said that I would go as long as I was up for it. I'm such a bad friend.