Back To Work

Today was my 3rd day back at work. I was glad to go back. But, by today, I was tired. My office was moving locations today. Getting back to a normal routine AND moving may have been a little much for me. My ankle keeps swelling. I'm due for my Remicade infusion tomorrow. I'm really glad too, this time around I feel like it wore off last week. I'm thinking about talking to the doctor about having them more frequently. My mood is so much better with work now that I'm on happy pills. I really think I let my mind get to a bad place when I wasn't feeling good. I did struggle a little with fatigue today, but not until I was driving home. It wasn't like it used to be, but noticeable.

Feels Like A New Person

It's been 5 weeks since I started Remicade infusion's. I have to say that I feel like a different person. I really hope this keeps up. I noticed about 2 weeks ago that my energy had significantly changed. I was able to get through the day without napping, and stay up later than 7! My next infusion is next week. And towards the end of the month, I'll have labs done again. I haven't really had any major side effects. My stomach bothered me at first. I have noticed that I am bruising a lot.

I go back to work Monday, that'll be the real test! I'm only going to be working 4 days a week. I thought that would be a better compromise. I know that I really need to take care of myself so that I don't end up in that horrible position again. To even try to explain the physical and mental effects that RA has is just so difficult.

I recently participated in a RA gift exchange. I received some Biofreeze! I'm kind of excited, I've never tried it before and really look forward to trying it. I also was given a book on photography. Pretty cool since I have a camera I don't know how to use well.

Here's my cankle! 

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.