Well hello there. I’ve been crazy busy the last few weeks. My family has had quite a few big life changes as far as jobs and moving for the first time in 9.5 years so my body is super pissed about that. Pair that with medical insurance changes and having to stop and or change some meds, it’s been pretty awful. Today I am laid up with my useless legs and using talk to text to help write this blog since my hands are currently swollen and locked. I will have my husband help correct any wonkyness that may occur from using talk to text after I’m done 😉

Everyone’s Rheumatoid Arthritis is different.

I’m using this post to focus on the varying degrees of Rheumatic disease. Rheumatoid Arthritis is assessed by your doctor and usually falls into mild, moderate or severe.   There is a great article here at Health Central about how most doctors assess the severity of your disease.  Of course, every doctor is a little different. My rheumatologist is pretty conservative as far as treatment goes.  That being said, I have a positive rheumatoid factor, and my sed rate and CRP are consistently very high. My Vectra DA score has varied between 51-59 which is considered high.  My symptoms are fatigue, pain and swelling and difficulty walking.  I have multi joint Rheumatoid Arthritis so it effects my hands, elbows, hips, knees and feet. I had a brief period of remission while pregnant with my 2 year old, but still struggled with most of my symptoms while pregnant.

Katie's HandSo what is a flare?

Everyone is different and there are so many factors that can play into your disease activity. I have several forums I frequent on Facebook, and I like hearing everyone’s stories about their RA.  I see some people post about flares. Unfortunately, I don’t have flares. People look at me funny when I say that but it’s true. The reason I say I don’t have flares, is because I live in a constant state of pain.

There are days that are somewhat better than others, but there has yet to be one day in the last 5 years without daily stiffness, fatigue, and extreme pain in my hips, knees and feet. My rheumy always asks me how long it takes me to get up and going the stiffness worked out in the morning. We always laugh because he knows I’ll say “Oh it’s supposed to go away?”

I don’t complain daily, and I try to just be quiet about it because in all honesty, most people don’t want to hear it. I also feel like people can’t seem to believe it if you tell them you’re in pain all the time. Like it’s not possible for a “normal looking” 35 year old women to hurt that bad all the time.  My husband is awesome and super supportive and we were joking around the other evening. He was stretching because he had a sore back and was doing all kinds of exaggerated movements. I was watching him and he looked at me and said “So when you see me doing this, do you wonder how I can do it?” and it clicked that he gets it. I responded honestly and said yes. I told him that I don’t remember what it’s like to feel normal anymore. My problems started when my oldest son was 1 so it’s been almost 5 years. I find myself watching people doing normal activities like walking or getting their kids out of the car and I can’t seem to grasp that they can do without extreme pain.  I don’t remember what it’s like be normal. I spend all day bargaining with my pain. I’ve learned to stop making the sounds when it hurts to get up out of a chair or lift my child. I’ve learned to hide the pained look on my face when just going into the store to get milk or diapers feels like a marathon of fatigue and excruciating pain.

Rheumatoid Arthritis can be a pretty invisible disease until your joints really start deforming and lock up completely.  For a very long time I saw my disease as embarrassing. I hid it from almost everyone because they won’t understand, don’t care to understand, or they won’t believe it’s really that bad. Unfortunately, hiding it is quickly becoming impossible. I can’t hide my limp anymore. I can’t “pretend” to look normal when trying to get out of a chair or car.  After 5 years of dealing with my RA, I’m am being forced to come to terms with my disability.  I am disabled and at this time there isn’t anything I can do to change that.

Hopefully someday soon my rheumatologist and I will find a mix of meds that give my life a little bit of normalcy back.  The odds aren’t stacked in my favor since I have such severe RA at such a young age and I have yet to find medication to control it, but I remain hopeful.  How severe is your RA? Do you live in a constant flare or have periods of rest?

-Katie

*Disclaimer* I haven’t spell checked this and I’m in a terrible mood. Just throwing that out there*

 

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