Health Uncategorized

I Am the Problem

As most of you know, I have rheumatoid arthritis. You know this because I’m very open about my chronic pain struggles and history, both here and on my Twitter feed. I’m also open about the fact that I am actually disabled because of my RA. (Oh but keep in mind that not everyone who has RA considers themselves disabled – depends on the person and their medical history, including how much their RA gets in the way of their life on a regular basis.) 
There are a of couple things that demonstrate my disability: I have a permanent disabled parking pass, I have an Americans with Disabilities Act form on file with the school district that I work for, and occasionally I use a cane and/or knee brace. 
I’m very comfortable sharing these things. They are a part of my life and I’m not ashamed of them. 
I am in massive amounts of pain in this picture. The hint? I’m sitting in a chair making an awkward pose. I’m completely serious that is the hint proving that I’m in loads of pain.
Why, then, do I have such a hard time taking days off for not feeling well?
It’s not that I’m trying to hide that I am disabled from work. My boss is aware of it, and she knows that I might need to take more days off because of pain and sickness. I explained that my medications suppress my immune system, so I get sick very easily. Everyone is aware that these are my limitations, and no one is more aware than me. 
Plus, I have known since I started my current medication that I would have a tough time the first time that my medication ran out of my system while I was working. Well, that time has come. Until December 23rd, my very important arthritis medication is out of my system and I am feeling it 100%. I knew this would happen, so over the past 4 months, I purposefully went into work some days because I wanted to save my sick days for this time. 
So why is it so hard for me to take these days now?
On Monday, I woke up not feeling so great, but I figured that it was the medication being out and normal Monday-morning feelings. By 10:30, I knew that I needed to leave because I felt so completely rotten. I only had one more class to teach, but I couldn’t stay and do it. I was home and in bed by 11:30. I got out of bed twice the rest of the day. Once was to go buy food because I was completely out after being gone over the long weekend. The other time was to stick my head in the freezer. That’s because I randomly came down with a fever of a little over 100 degrees. Since my base temperature is 97, that is way too warm for me.
On Tuesday, I felt better. Not great, but better. I was able to be in school and things were okay other than my high pain, which is very common right now without that medication. 
On Wednesday, I slept through 3 alarms and woke up 2 hours late after my 3rd night of not getting much sleep due to high pain. High pain and general discomfort throughout the day, followed by VERY high pain at night. As of 4AM on Thursday, I had not slept Wednesday night.
Taking a day off is clearly what needs to happen after how these 3 days went. It is obvious to anyone else. If this happened to a friend of mine, I would tell them to do that. But to me? Unless I have a contagious sickness, it is so hard for me to remind myself that I can and should take days off.
I sat down to write this post at 2AM because I was unable to sleep from pain and I needed a distraction. Well, it seemed to work its magic, because over the course of writing I realized that I really really really needed to not go into work today. I’ve said all week that my immune system is freaking out, and it’s true. I don’t need to tempt fate and wind up in the hospital behind on work and out more than 1 day when I can miss 1 day and rest.
No one is telling me that I can’t take my sick days. It’s just me. Maybe on these moments where my disability and my illness are most evident I want to be stronger than them. But, as I know, that doesn’t change whether or not they are there. 

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  • Im inspired by you and thank you for sharing your story. I hope the best for you and hope you find some sort of relief at times !

    xo,
    Ellen
    http://www.askawayblog.com

  • I have said so many times in my life that those suffering from chronic pain and illness are my heros. After reading this I realized that it is absolutely true. I am so sorry you have to experience this, what a horrific condition. You're always in my prayers. Just remeber that everyone understands and when your body is telling you to rest, take advantage girl. I will be thinking of you and praying your pain is somewhat bearable until your next infusion.

    Xo

  • I'm going through a lot with my chronic pain right now (nerve pain continues to prove that it's difficult to treat and is getting worse over time!) so I understand this completely. Hang in there and take the time you need. Praying that this rest will help and you'll be back and kicking ass soon. You are so strong and I know you students and fellow teachers see how hard you're working!

  • I am sending so many prayers your way! I really admire you for trying to be strong and sharing your struggle.

  • aw! I'm sorry to hear what you're going through, And I especially admire your willingness to talk about it so candidly. I've dealt with chronic pain and fatigue since I was in my teens (diagnosed with fibromyalgia when I was 19), and I've wanted to blog about it, but haven't figured out how to do it without sounding like I'm just whining

  • I'm so sorry to hear that you've been having a rough time! You are such an inspiration for your continued strength and how you just keep on going! You are an amazing woman and I pray for healing for you!