JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

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Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Tuesday, March 1, 2011

A day in the life of a Rheumatoid Arthritis sufferer...

So I'm not a big complainer, and most of my blogs are informational, but I'd like to start sharing more of my experiences as well.  Part of the reason I created this blog, was to spread awareness about this disease, especially with those who do not understand it.  It's very hard to explain how this disease makes me feel to my loved ones, especially if they do not experience it first-hand.  I try all I can, and some try to understand, but no one will know unless they are going through it themselves.  I hope that by explaining what I go through, and how I feel, will help shed some light on those ignorant of this disease.  I've had a few family members thank me for writing this, because they said they can understand it better.  Which is great, and I only hope it helps others.  I also hope to share my experience with those who have RA, and are new to it.  I've had many "newbies" ask me a lot of questions, since I've had it for so long.  I'm no expert, but I've dealt with this disease long enough to know a lot about it.  I love answering any questions that I can, and sharing with everyone, what I have gone through.  It makes me feel good to help others.  Today, I'm complaining a bit, and sharing with you a bit what it's like to live a day in the shoes of someone with Rheumatoid Arthritis. 

To have Rheumatoid Arthritis, it not only comes with pain, but fatigue as well.  Before making plans to go out, I have to plan everything around how I feel.  For example, how much walking I will be doing, if there will be a lot of people there (because of my immune deficiency, I have to be very careful with germs), and how fatigued I feel, rates how long I'd be able to stay out for.  It really sucks most of the time, because I'd really love to just go out and enjoy myself.  Every time I do, I end up paying for it when I get home, or the next few days.  For example, yesterday Adam and I went out for a couple of hours to do a little shopping and had some dinner.  I came home and felt like my body was run over by a freight train! I slept 10 hours last night, and woke up feeling so fatigued and run-down today.  That's normal for me though, or for anyone who suffers from RA. I know that I will feel like this for at least a few days. In a way, it's worth it to enjoy life for a little while and have some fun.  I really don't want to spend my life couped up in fear of being in pain, and feeling fatigued.  It's just not the type of life I'd want to live. I'd love to live a normal life, although, I don't even know what normal is!

Living normal would be great, but I know and have come to accept it's just not in the cards for me.  Like I said, I will enjoy my life the best that I can, when I can.  I'm not going to be stupid and go out every day, or every week, because the rest is good for me.  I don't want to over-due it and end up in a flare.  A flare is when my joints become inflamed, stiff and in pain.  My joints look and feel like they have jelly in them, I can't move them much at all, and it hurts to do everyday things.  Right now both my knees are killing me, and it hurts to move. My jaw has been hurting me for a while now, and I am having difficulty eating certain foods because the chewing hurts a lot.  My neck is stiff and I've been having trouble washing my hair, because it hurts to move my neck to rinse the shampoo out.  Do I force myself to shower and in-turn cause myself pain?  Do I try taking a bath and just do what I can? Or skip it altogether and get rest?  It's a tough choice, because with my knees the way they are right now, even taking a bath will cause me pain trying to get in and out of the tub.  Since heat usually helps with the pain, I most likely will end up taking a bath, with assistance getting into the tub from Adam.  The heat from the bath helps me, for a little while.  Usually after I get out of the tub, and my knee cools down again, the pain comes back. 

This is a normal day for someone like me.  I feel like this most days, very rarely do I have a day where I feel good and without pain.  There are some lucky ones who have their RA under control, with little pain.  There is no cure for this, so I don't think one could live entirely without pain, but if it's well controlled then you can live a little while without pain.  Ever since I was first diagnosed when I was 3, my doctors have had very much difficulty controlling my disease.  I was looking through my medical files last week and I kept seeing the same thing written over and over again by my doctors: "her disease has been very hard to control".  I've been on just about everything out there, and of course I'd love for a cure to be found, but in the meantime I'd really just like to find a medicine regime that helps me live without pain, even if for just a few days.  Maybe it would help me live a somewhat "normal" life.... whatever that may be.


Blogger mary said...

My daughter is 3 and it has poly JRA it definitely has it challenges. i was so happy to see this blog and will definitely be reading more of it :) any advice you could give me and what i am in store for?

March 6, 2011 at 4:31 PM  
Blogger maybeitsmallory said...

Hi mary! I've had Poly JRA since I was 3 also. There is definitely more medications out there, than there were when I was little. She will experience joint swelling, pain and fatigue. Hopefully they can find a medicine that will help prevent those from occuring. Since there is no cure, she will always experience some degree of pain. Sometimes it is difficult to control JRA, after 23 years I'm still trying to find a medicine that works, but that's rare. I've developed allergies to a lot of medicines, and am considered a rare case. Some people are able to find a medicine that does work, and are able to lead some-what normal lives. I hope she will be one of them. Feel free to ask me any questions you want. :)

March 7, 2011 at 11:55 AM  
Anonymous Anonymous said...

Thank you Mallory for your blog. I write from a parent point of view. I will share this BLOG with my daughter who has had JRA since age 2. She is 25.
I really wish Blogging had been around when she was young and someone like you could have told me/us the road we would be walking. Regards Lora

August 18, 2011 at 3:27 PM  
Anonymous Anonymous said...

I feel like I am reading my life. For instance I need to go down to store to get my folic acid. I just don't feel like it. :-) I totally understand the "have to wait to see how I feel". :-) Crystal

October 29, 2011 at 8:03 PM  

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