What? You're hurting? Still?

Why is it so hard for my family to understand that RA hurts. It's not like I JUST got the disease. I've had it since I was 5. My entire body hurts. It hurts to walk, it hurts to go upstairs, and lately with the costochondritis it hurts to breathe. When I go anywhere with my family, they just don't seem very understanding. They're literally walk a mile ahead of me, while I'm limping to try to catch up. That's after we've parked as far away from our destination as possible, it seems anyway. Even though I have a handicap placard. And, then when I mention my pain, it's a complete shocker to them. Or they see my difficulty breathing and ask what's wrong with me.

I'm laying in bed, AGAIN, while my family is out enjoying the day. When I said that I was going to lay down, my mom said, "well at least you have tomorrow off of work". Yes, but that day off isn't going to miraculously make it all better. All I want is for people to try to understand. Usually when I try to talk about my pain, or my doctors appointments, she changes the subject. I am completely alone in this battle.

On my day off tomorrow, I'm going to see my primary care doctor. I can't get into see my rheumatologist for a couple of weeks. I need to talk about possible pain management specialist and my depression over all of this. This disease is consuming my life. I have things I want to do. But, not while I'm hurting. I can't and won't live like this for the rest of my life.

Pity Party, Table For One

I've been on Xeljanz for the past week. According to everything I've read online, it takes 2-8 weeks to notice any improvement. I have been in constant pain. I feel like things are getting worse, I'm getting stiffer. My costochondritis is flaring right now. And, it's just making me super depressed. My pain pills are not controlling the pain, but they make me sleepy which helps me to not feel it. But, I also don't sleep well because I wake up from pain. I'm at such a loss as to what I should do. I find myself crying almost everyday. Mostly from the pain, but also because I'm so frustrated.

My family went to my Aunt's house for dinner yesterday. I wasn't up for it. But, then I realized that meant I needed to get dinner for myself. I left the house, and went to the store. At the store, I parked in the handicap parking spot. I got the dirtiest look from someone. It just made me want to yell at them, if only I had the strength. People have no idea how hard it is to get out of the car, let alone walk around the store.

I emailed my rheumatologist and asked her if I should be seeing a pain management specialist. She suggested I see her sooner, since my current regimen isn't helping me. I called the office to schedule, my appointment is in 3 weeks. Three weeks is a eternity when you're in pain.

The costochondritis just started yesterday. I haven't had this bother me in such a long time. I'm laying down with a heat pack on my chest now. It hurts to breathe, I'm trying my best to relax and take small short breathes.

I honestly don't know how much more and how much longer I can take this. I'm so frustrated. All I've been wanting for over 30 years is to be "normal". Life is such a struggle.

Buh Bye MTX, Hello Again Termites

I will never understand why people question me when I say that my body aches or that I hurt really bad. It's almost like, its not gone yet? Some common responses I get are "really?" or "still?" and it just drives me crazy. It makes me feel like I need to somehow justify my pain, it is real. I wish someone could step into my shoes and feel it, PLEASE. 

Doc stopped my methotrexate last week. It's amazing sometimes when you stop a medication and side effects are slowly stopping, you didn't even realize you had. I feel so much more clear headed, and not as tired. But, I am in pain. I was in pain while on it as well. My insurance has finally approved Xeljanz. I have taken this before and did not experience any side effects. It should be delivered UPS tomorrow. 

My left knee hurts really bad right now. It's still tolerable, I say about a 7-7.5 on the pain scale. I always say that it feels like I have termites in my knee. When I was standing during church this morning, it felt like I weighed 500 pounds. After a few minutes of standing, I just feel all my weight on that knee. I hate taking pain pills because they make me go to sleep. I feel like all I do is sleep. I'm actually awake past my bedtime right now. I'm trying to change my sleeping patterns a bit, just so I feel that I'm not sleeping all the time.

MTX stomach is the new morning sickness

I saw the new rheumy on Christmas Eve. It's like starting from scratch ALL OVER AGAIN. By the day of my appointment, I had been off of all RA meds since insurance denied the Xelanz. New Doc re-started the methotrexate, injectable. I had been on it before, but it was stopped to see if that was causing my extreme fatigue. I did my first injection that evening after seeing her. A couple days later, the nausea hit me. My stomach didn't even want water. I had the same reaction before with methotrexate, but with the pills. I've since started taking omeprazole in the morning, and the nausea is a little better.

I was able to go with my family to the snow on Friday. This was only my 3rd time ever seeing snow. I've always had trouble going to places with cold temperatures. I even pushed myself a little and went on a tube down a hill. I mostly took in the view and got some great pics. I wasn't able to feel my hands though after about an hour, almost completely numb. The experience was worth it though.

One of my friends invited me over for her husbands Birthday yesterday. I told her I would try. After taking my sister to get her hair done, I was wiped out. I really hope that deep down people do understand. I want to do more, and see friends. Most days, I am so tired that I really do need to rest. It's frustrating though, it's like waiting to get better. But, you never know if you're going to.

I don't want to live with my family forever. I'm 37 years old and scared to live on my own because some days, I need help with the simple things. I never thought I would have to depend on someone else to always cook for me, or bring food to me in bed because I can't get out of bed. I want more than anything to be a "normal" person my age.

Right now, my knees are screaming at me. Not full force, but I can hear them none the less. It's a tolerable pain if I'm in bed. If I bear all my weight on my knees for more than a few minutes, it gets bad. I had a difficult time in church today, I felt like I weight 500 pounds. You really feel the weight that you carry-on your knee joints.