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!

Wednesday, December 8, 2010

What NOT to say to an RA sufferer!

It was suggested from a few RA Chicks that we should make a blog of what NOT to say to an RA sufferer.  I agree with this 100%.  How many times were things said to you, that you hurt or upset you?  Don't you wish people were more educated and can ask you the right questions?  So I'm compiling a list to hopefully spread the word to others so they learn a little bit about what we go through.

1.  Well, you LOOK great!! --- Thanks for the compliment, but what I'm dealing with is going on INSIDE my body.  Just because I look great, doesn't mean I feel great.  There's a war going on in my joints, I just put on a smile to get through the day.

2.  Well, just don't take your medicine tonight and we can drink! -- This was said to me in regards to my MTX.  I tried explaining that the MTX takes months to even work, not taking it one week is not only dangerous, but will do nothing to stopping my liver from acting up if it wants to.  I can have fun without a drink.

3. I hate when you tell someone you have RA and they say "It is hell getting old"!  -- Thanks Cindy Arnold for this one!  RA is not something you get because you're old, it's an auto-immune disease!! Rheumatism, or Arthritic fingers, is different from Rheumatoid Arthritis.  There are 100s of different types of Arthritis.  Hell, I've had JRA since I was 3!! Please refer to the RA Dictionary for some more definitions.

4. I don't understand why you can't hang out with me.  You just have achy joints.  You're being selfish.  It's hard to hang out with you. -- Courtesy of Hannah Cerasoli.  It's tough when you have friends who don't believe you, or don't understand why you have to cancel plans all the time.  It's not that we don't want to spend time with you, we either are in too much pain, or don't have the energy.  Like I said before, there is a war going on in our joints, our cells are fighting each other.  This bogs us down and makes our energy fly out the window.  Please try to understand it's not you! Please check out The Spoon Theory, this should help clear things up a bit.

5. You have RA, nothing to it...not like you were dying or something, I have it -- Courtesy of Tammy Rabon Hardwick.   Nothing to it?  You can live with a weakened immune system, having days where you're in so much pain and your joints are so stiff you can't even get out of bed?  Some days you force yourself and you loose all energy?  You get sick all of the time? You're put on toxic drugs?  Yea, just a walk in the park.  Sorry, this is one that angers me too.  While you can't die directly from RA, our lives are cut short by 10 years because of it and can possibly die from the resulting weakened immune system and dangerous drugs used for controlling the disease. Organs are affected by Rheumatoid Arthritis including the skin, nervous system, eyes, lungs, heart, and blood among others can be adversely affected by RA.  It carries the possibility of developing Rheumatoid Vasculitis, or inflammation of the blood vessels. this disease is life-threatening and can cause skin ulcerations, infections, nerve disorders that cause pain, numbness or tingling and bleeding stomach ulcers. Vasculitis can also affect the brain and nerves, as well as the heart, which can lead to stroke, heart attack, or heart failure.


6.  You're too young for that! or You're young, you wouldn't understand. -- Thanks Jasmine Knox for the first one! -- I was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was 3.  The condition affects more than 50,000 children each year in the United States alone.  Not only that, men and women of all ages are affected by RA. 

7. If you get off your meds, because methotrexate is killing you, and only follow a certian diet lifestyle of using herbs, essential oils & only eating certain foods... you will be cured.  -- Um, right.  Herbs will cure me of my wacked out immune system, kill them and make them go away?  If that was the case doctors would have told us about these.  I've tried many different herbs, some may help ease the pain, but so minimally you can't tell much. 
8. But you were fine yesterday!! --- Sure, it's called a flare-up, depending on stress, foods we eat or just how Mr. Arthur is feeling that day, some days are worse than others.  Flare-ups can come on fast, and can take some heavy duty meds to make them go away.

9.  When will you feel better? -- There is no cure for RA, I have this for life.  While some days are better than others, we really can't tell what the day will bring. 
10. Exercise would really help you feel better. -- Exercise is really hard for an RA patient.  There are lots of exercises we are told not to do, because they harm our joints by putting weight on them.   Going for a walk is great, but there are days where we don't have the energy, or our knees are so stiff we can't move them, nevermind try and walk or exercise!
11. Why do you walk so funny? -- When our joints have inflammation, like our knees, it makes it difficult for them to move.  Walking can be very difficult sometimes, there are some who can't walk at all.
12. Is that your handicapped parking tag? -- Oh man, I get this one a lot, because I'm so young.  This also can relate back to #1.   Just because we "look" okay, does not mean we aren't suffering. 
13. I used Tylenol arthritis and mine went away. -- Tylenol is used as a pain reliever.  RA is an auto-immune disease, tylenol does not suppress the immune system to help us. 

14. 'You need to get out more'. -- Um hello, if I was well enough to even get down the stairs maybe I would, but hey if I could do that then I would be back at work! I was misdiagnosed for having depression for over a year before my blood was tested and my ESr was 235! No wonder I wanted to sleep all the time and cried. -- Another one from Jasmine Knox
Coming in the next few blogs...
An exclusive interview with Elizabeth Wald, Stones in Harmony owner &creator
Holiday Cooking -- ways to make it easier!

1 Comments:

Blogger KO said...

Have you considered Chinese Traditional Medicine? It sounds like a far stretch but it is actually making some headway with food allergies. As a person who suffers from a severe food allergy, I was intrigued in the top-down approach of CTM because it works to maintain a balance within the body and the autoimmune system. Research is under way now to study exactly what compounds are responsible for what actions, but murine models (mouse tests) using a specific formulation of these herbs on lab mice with severe anaphylactic response to peanuts over the course of several weeks actually protected them from a reaction during and for some time after treatment! While a definitive cure might still be well off, this approach to medicine that targets cell production of certain compounds and proteins might hold the clue for many autoimmune diseases that Western medicine has yet to try. If anything, there still is hope!

December 9, 2010 at 2:53 PM  

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