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.

Medication-DENIED

I have really been struggling with my RA the past few weeks. This disease really has a mind of it's own. It likes to "wake up" at the worst times. I continue to push myself at work, just to make it to 8 hours. I feel like I'm barely getting by some days. The fatigue has improved with some medication adjustments, but I'm still falling asleep driving home from work. There were some days last week that I wanted to use my cane, but I didn't want to bring attention to myself. The doctor told me a few weeks ago to change my diet. She wants me to cut out sugar and white bread. I live with my mom and sister. Most days, I rely on my mom to prepare meals. It's really hard to change my diet when I'm eating what other people make. My sister and cousin commented saying that I could prepare my meal the night before. I tried explaining what a typical RA day is like, and the fatigue. They didn't get it. They don't see any reason why I can't make my meals. It hurts my feelings when people don't understand how hard it can be. For so many years, I hid most of my pain. I've come to a point that I can no longer manage my pain. And, like most RA'ers, I can tolerate quite a bit of pain. The pain is really wearing on me and I hate it. I hate living like this. I made a appointment for a second opinion with another rheumatologist. I need more medication control, not just with pain meds. I need this disease controlled. I opened my mail today, the insurance company has denied my refill for xeljanz. I have no idea what I'm going to do. I'm out of medication, this is my only med that I'm on now. Doc stopped my methotrexate after I became anemic. All my hope is now in the hands of the second opinion doc that I see on Wednesday.

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.