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?

Sleep Study

Waking up to someone next to you watching you sleep is one thing. A monitored sleep study, and one that is 2 days is a whole other story.

I think my doc was tired of hearing me complain about my fatigue. I've always attributed my fatigue to RA. I still do. But, doc wanted to make sure nothing else was going on since I was falling asleep driving home.

I've been on prednisone for 2 weeks now and the fatigue isn't like it was. Prednisone has always made me hyper or just helped increase my energy.

I checked in for the sleep study yesterday before 7pm. They had wires all over my head and face, even one on each leg. Surprisingly, it didn't really bother me when it came time to sleep. I slept through the night fine. But, I had to stay all day today for the second portion. When I woke up, I was to have breakfast and could either read or watch tv for 1.5-2hrs, then take a 20 minute nap. We did this process until a little after 4pm. I felt so dirty and cranky from being in one room all day. My legs were stiff from laying there. I tried stretching, but it didn't help much.

I'm so glad it's over and I get to sleep in my own bed tonight, without anyone watching me. Now, I sit and wait for results.

But, good news, I did get a email from my rheumy saying Remicade was finally approved by insurance. I can start my infusion therapy soon. Hopefully, that means I can start weaning off the roids.

Thing NOT To Say To Someone With RA

There are a lot of things that people say that often hurt my feelings. Especially lately, with my RA symptoms being like a roller coaster. The unpredictable symptoms sometimes makes me feel like people actually question my actual pain.

"Oh you're just in pain, it'll go away"

I wish I could hand off the RA stick to people, just so they could feel what a flare feels like. Sometimes, trying to explain it doesn't do any justice at all.

"I can't do anything for you"

Yes, people can actually help. With a full on flare, I need help with the daily things. Making my bed, maybe even unhooking my bra. These may seem like little things, but the energy it takes when your hands hurt is just crazy.

"You were fine earlier"

Sure, that may be true. But, I honestly cannot control the symptoms. They come on when they feel like it. These statements only make me feel like people think I am lying.

"Why are you walking like that?"

Believe me, I do not think limps are cool. If I'm limping, it's because I am in pain. I'll probably try to downplay it,  but mostly so I don't hear one of the other above responses.

"You're not better yet?"

It may be surprising to some people, but RA is not like the flu. It's not going to go away. Unless you know of a cure that I don't. And believe me, I WANT to be better.

"Why are you hurting, what did you do?"

What did I do? I didn't GIVE myself RA. I did not injure myself. Granted, there are times that a flare could be brought on by doing too much. I still don't think the blame should be pointed at me for wanting to try to be "normal".

"You're tired, oh I am too"

Ha! Do "normal" people have any idea what autoimmune fatigue is like? Really though? Some days I could sleep close to 12 hours and feel like I'm crashing at work the next day.

"My body hurts, I feel like you"

You feel like me? Step in my shoes for a day to understand the struggles I go through. Have you ever struggled trying to open the toothpaste? Does it hurt you to drive because gripping the steering wheel kills your stiff hands? Yes, you may have pain, but you are not like me....unless you have RA.

I think the main reason so many of these comments bother me is that I've always been open about my RA. I've had RA since I was 5 years old, nearly my entire life. The disease is not new, neither are the symptoms. THAT is why people should not act surprised if I'm flaring. I never want pity, NEVER. Just understanding. I talk about my RA often because I want people to understand it. I sometimes try to tell "normal" people that it feels like after a intense work out, with having the flu. But, only it lasts just about every day. I'd much rather welcome questions than feeling people question my symptoms like they're not real.

I'm Not A Doctor, I Just Play One While On WEBMD.

Working in healthcare, I always tell my patients to stay away from the internet. Diagnosing oneself can lead to much anxiety.

I have followed a RA blogger for quite some time. Arthritis Ashley is well known in the RA and online world for her positive notes and resourceful links about health. She has recently written a new book, a memoir. Currently, I am more than half way done with it. It's a easy read, but with my fatigue it is taking longer than normal to finish a book. She shares about her diagnosis, symptoms, and getting through life with a autoimmune disease. While reading it today, I had a AH-HA moment. She was talking about her diagnosis of Chiari. I've heard her speak of this before online, but have never really known what it was. So, doing the patient thing, I googled it. The next thing I know, I'm emailing my doc asking for a MRI. My neurologist has never evaluated me for this and I have had many of the symptoms for years. Just last week, I was at a PT appointment and they asked me to stand on my tip toes. I nearly fell over. I have zero balance. My headaches are almost a daily occurrence, and the neck pain at the back of my head feels like I can't move my head left to right. And, lets not talk about the fatigue. I fall asleep driving home at 4 in the afternoon. What the heck?! Although, we never want a serious diagnosis, we always strive for answers. Something that makes sense. If I have this disease, then the symptoms would feel like they fit.

Pain Ranting

These headaches lately are so draining. Everytime I get a migraine, it takes at least 2-3 days for it to slowly go away.

On top of my nearly constant headaches, it rained this week and we had some temperature changes. That makes me achy. My entire body is achy. You would think I would be a pro at this RA thing. I've had RA nearly my entire life, yet I never know what to do. I stopped contacting my rheumy when I'm in pain. I don't want to keep adding more pills.

It's just frustrating. Everyone wants to be their best, to feel well. I really want to start a pilates class. How do I do that when I'm falling asleep driving home from work. And, my hands hurt so bad to hold the steering wheel.

I wish there was a local support group for people with RA. The online groups are starting to get really depressing.

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.

RA Drains Me

I was waiting until this morning to decide if I would stay home from work or not. My body decided for me. I have zero energy, my head is killing me and I just feel achy all over. I've slept all day, yet I still can't get out of bed. I did manage to get up to brush my teeth and get some caffeine.

It's funny, we have a little chihuahua. She's a quiet little dog, but I feel like she always senses when I don't feel good because she'll come and lay with me. I guess animals are just smart.

Tomorrow is my busy day at work. Every Wednesday, we see patients all day long. I'm on my feet all day. I look forward to it because I love my patients. Right now, I have no idea how that's going to happen. I don't even have the energy to drive to work.

Rest vs Sleep

Chronic fatigue has not been easy lately. And, it hasn't been easy to explain. Depending on my mood, sometimes I feel like I need a disclaimer rubberbanded around my wrist. Other times, I wish people would just stop asking what's wrong. The feeling of being so tired and not getting enough sleep is sometimes unbearable. Waking up yawning and knowing you are JUST starting your day could bring tears to your eyes. I truly know this. I swallow these tears often.

Its difficult working full time(while having to commute) and dealing with fatigue. I try to nap on the weekends to catch up on sleep. Most often, I find I'm still sleepy. Recently, I experimented with myself. I reduced my work hours to allow to take care of myself properly. When I napped, I still felt very tired. If I would just lay in bed and rest or meditate I would actually feel more rested. It seemed a little strange to me. I really thought sleep would be the answer.

"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?