Sometimes, people just will NOT understand

My left knee, I also call my surgery knee, has been bothering me for well over a month now. It's the same pain that I felt before I had arthroscopic surgery. I went to see the knee surgeon on Thursday, we're trying cortisone injections before making any crazy decisions. So, I got my injection, was reminded to stay off my feet for 2 days. I figured with only one more day in the work week, I could manage at work with my leg up and letting them know I couldn't walk around. Work was understanding. I propped my leg up, even put on my snuggy and shut my office door. One of the girls came in later, I was telling her that I was dying for some coffee. We laughed, saying how great it would be if Starbucks delivered. A little while later, I had to leave my office, I walk out and Starbucks is being passed out. Did anyone think about the girl that cannot walk to get coffee? Sometimes, just little things mean so much.


After work, I realized my house key was left in my jacket-in the house. I had to wait for someone to get home. I figured I would get my nails done while waiting. I drove down the street, and luckily they had a opening. It turned out to be a awful experience. The lady was so rough with me. Even after I told her I had arthritis. She kept telling me to relax my hand. My hands are so stiff, I can't help which way they go. I was so close to tears. Then, she kept pulling my arm so hard that my shoulder would react. I would get this look almost like, what's wrong with you. It just breaks my heart when people don't have any compassion. I get my nails done on a regular basis, but normally at a place near work. They are so professional and understanding. They even ask if they're hurting me. I guess, lesson learned with this place.

Set backs

We always try to take steps forward with our disease. RA is a progressive disease, and any set back is a complete let down.

I recently had to hold my medication for my gallbladder surgery. This was to prevent infection. Some medication prevent healing. I waiting about 2 1/2 weeks AFTER surgery to restart my methotrexate.

Yesterday was 5 weeks post surgery. I now have a infection. Albeit, just in the belly button, doesn't look like it's deep in the belly. My body is completely worn down, I'm sure because it's recovering from fighting this little infection. AND, I have to skip my methotrexate injection because I have a active infection.

Sometimes the most difficult, besides the set backs, is the lack of support or understanding. I don't think people realize that it is harder for someone with a autoimmune disease to heal.

Pain after arthroscopic surgery

On February 28th of this year, I had arthroscopic surgery on my knee. Doc said he cleaned out the synovium. I noticed right away that awful lingering pain went away after surgery. Here it is, about 5 months later, the pain is slowly coming back. It's accompanied by a strange clicking sound when I walk. Sometimes when I hear the clicking sound, I almost don't feel completely stable on that knee. I called to make a appointment with the surgeon. They said it would be at least 2 months. I opted for the physicians assistant, her wait is only one month. I've never seen her though, she doesn't know my history AND she's not the one that did the surgery.

This pic is my before and after shot from when they cleaned up my synovium. I'm crossing my fingers it still looks like the after pic!


Yesterday was 4 weeks post gallbladder surgery. I had planned to start back at the gym this weekend. I'm not sure if that's a good idea now with the current pain in my knee. I know it's not a RA flare, but I just don't want to do anything I shouldn't.

There was a comment made to me this past week that bothered me. Someone said "something has to always be hurting you". This is why I try not to complain out loud. Having had RA for nearly my entire life, people are tired of hearing about my pains. I truly cannot help the pain. With RA, comes many other things that "break down" my body. Osteoporosis, OA, fatigue, belly aches, weight fluctuation, depression. It's all a part of this awful disease. I wish there was a way to help people understand that better.

FMLA

Years ago, someone mentioned FMLA to me and told me how it "protects your job". Technically, if your doctor fills it out correctly, you can use intermittent leave whenever you want. My doctor wrote it as such that I can take up to 3 whole days a week. But, I have never done that. I have used it to call in, go home early, or for doctor appointments. I rarely use it, that is, until I'm having a flare. I may use the 3 days, but what I'll do is make all 3 days minimum days. I try my hardest not to impact my entire office. I know how hard it is when one person is out. 

I had surgery in March, we scoped my knee and did a synovectomy. After surgery, I had a hard time restarting my meds. I had to hold my plaquenil for 3 weeks for surgery, once I restarted it, it made me sick. While trying to recover from surgery, I was started to flare because my meds weren't under control. My doc only had me off work for 3 weeks after my knee surgery. I returned, limping and flaring. Of course, I turned to fmla time. I left early here and there. 

Right now, I'm scheduled to see a surgeon on Tuesday for gallbladder surgery. I have been in constant pain for at least a month. I've only missed one day of work, but that was because I was in the Emergency Room. 

What I'm struggling with is that my work is pointing the finger at me for "not doing my job". When things do not get done because I'm out due to fmla. It almost makes me scared to use it sometimes because I know I'll get called into the office to be reminded of something that was missed. Everyone knows you can't talk to HR because they're friends with the boss, and then you get made fun of. It's just ridiculous. Sadly, I work for a large organization. I'm not sure how fmla protects my job anymore. Sometimes, I feel like they're building this case of "she doesn't get her work done" to get me fired. Its scary.

Internalizing Pain

I'm sure I'm not the only one that downplays RA pain at times. Meaning, I throw a smile(even a half smile) on my face when I'm not feeling good. Having lived with RA nearly my entire life, I know people get tired of hearing me complain of hurting. And, I don't always want to be labeled as "that person". You know? Maybe it's not right, But, it's just how I feel. I may feel like screaming that day. Or just crying. Sometimes, at work, I actually will close my office door and have a good cry when I'm in really bad pain. I just don't feel the need to  bring other people down.

Right now, I'm struggling with gallstones. If you've ever had to deal with this, then YOU KNOW. I am trying my best to internalize this pain. The best that I can do at work, is basically starve myself right now, which is not good.

Common Misconceptions

"It's Summer, you should be feeling SOOOO much better now". No, unfortunately, RA isn't controlled by seasons. I wish it could be controlled by something though! When I was younger, summertime was the WORST. Living in California, we get triple digit weather, I always wanted to just dip my legs into a pool. RA'rs know what happens when you go from extreme heat to extreme cold. PAIN! Needless to say, I never learned how to swim!

The same happens when you turn on the air conditioning. Yes, it cools me down. But, after a little while, it starts to make me ache. When I drive in my car, I have on the AC and the windows down. I'm sure to "normal" people it doesn't make sense. To me, it's my balance. I wear sweaters a lot in the summer because of the AC. I'm sure people look at me strangely, but I honestly don't care. I need to be comfortable.

"Why are you so tired?"

This is a question I seem to hear a few times a week. Despite my best efforts to describe chronic fatigue and RA, people think if you "look well", you shouldn't be tired. I work full time, so I look forward to napping on the weekends. Sometimes I'll wake up from a nap, have lunch, then nap again. To me, I'm recharging. That's what my weekend is for. I know if I have too many days where fight through the fatigue, I flare. I have lost friends over this because they simply did not understand, or just did not want to take the time to understand. RA fatigue is real and cannot be controlled. I sometimes wish people could take turns and be in my shoes for 24 hours. I wonder if they would look at me differently?