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[About RA] My RA Fact Sheet

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quick guide to rheumatoid arthritisMy RA Fact Sheet

by Thesirenscream

 

I made this when I was first diagnosed and gave it to my family. It’s kind of long but they said it helped them to understand a lot more about RA. Hope it’s helpful for you all too!

First let’s discuss exactly what RA is. Rheumatoid Arthritis (RA) is an autoimmune disease. What that means is that my body’s immune system overacts and thinks that my joints are enemy cells, and attacks them. This causes a whole bunch of not-fun symptoms including, but not limited to, bilateral stiffness (if a specific joint on one side of the body is stiff, the same joint on the other side will also be stiff), joint pain, migratory pain (different joints can be in pain on different days), swelling, redness/hotness of the joints, chronic fatigue, fevers, soreness, rashes, bruising of the joints, muscle pain, loss of mobility (ex: grasping a fork, combing hair, holding a cup, etc.), loss of appetite, depression, anxiety, anemia, cold and/or sweaty hands and feet, sensitivity to cold, etc. On top of that add the side effects of many of the medications prescribed to treat RA: nausea, vomiting, heartburn, hair loss, weight gain, dramatic weight loss, moon face, mouth sores, migraines, increased vulnerability to illness, and too many more to list.

Rheumatoid Arthritis comes with “flares” and “remissions”. When I’m hurting, I’m “flaring”. When I feel okay I’m in “remission”. Flares can be brought on for no good reason at all. But sometimes they do have a cause, such as changes in the weather, over-doing it, cold weather, and stress. Remember this is a disease with no cure.

I know what you’re thinking, “man she’s so young to have this.” Wrong! Most people with RA are diagnosed in their 20’s. In fact, there are some kids with Juvenile Rheumatoid Arthritis that were diagnosed at just months old.

Needless to say all of this affects my life pretty dramatically. It’s hard for me to find a job because I can’t be on my feet for very long periods of time, and no one wants to hire someone that is calling in frequently. This means I rely on my mom for a place to live and money to spend. I try not to spend too much money because I know she already spends enough on me and at times that means I can’t do certain things because I can’t afford them.

There are some things that are different between me and a healthy 22 year old. For instance, I walk a bit slower than most. **hint hint for new friends: nothing drives me more insane than people that can’t slow down so they walk 15 feet in front of me…** I will choose a night at home with family or a quiet dinner and a show with friends over a night of drinking and dancing. In fact, I don’t drink at all anymore due to some of the medications I’m on. If you invite me out to a bar and I choose not to come just understand that it’s generally because I can’t drink and I don’t dance, not because I don’t want to be around you.

Does having RA make me less of a person? NO!! In fact, the pain & struggle does nothing but make me STRONGER. I am constantly surprised at the stuff life throws at me that I end up surviving!

Hope this helps those of you that aren’t familiar with the disease. Below are some more facts and some other websites that you can check if you’d like to read more about RA. I particularly suggest the “spoon theory” if you really want to have an impression of what it’s like to live with a chronic disease. And as always, if you have any questions, feel free to ask me! I’m very open & upfront about RA, and I have no trouble answering questions, no matter how trivial they may seem.

Seven Facts of Rheumatoid Arthritis That You May Not Know:

1.) RA affects 1% of the population and is three times more common in women than in men.

2.) One of most common reactions I get after telling someone that I have RA is, “You’re so young to get that.” This is really just a good testament to the average person’s ignorance to the disease. RA normally affects people aged 20-50, but in cases of Juvenile Rheumatoid Arthritis it can affect babies only months old.

3.) In addition to affecting the joints, rheumatoid arthritis may occasionally affect the skin, eyes, lungs, heart, blood, nerves or kidneys.

4.) Unlike “old people’s arthritis” (or osteoarthritis), rheumatoid arthritis is an autoimmune disease. Osteoarthritis normally stays content attacking only the joints that have worn away, where rheumatoid arthritis will cause not only bilateral stiffness*, joint pain*, migratory pain*, swelling*, redness/hotness of the joints*, fatigue*, fevers, soreness*, rashes, bruising of the joints, muscle pain*, loss of mobility (ex: grasping a fork, combing hair, etc.)*, loss of appetite*, depression*, anxiety*, anemia, cold and/or sweaty hands and feet*, & sensitivity to cold*. On top of that add the side effects of many of our medications: nausea*, vomiting, heartburn*, hair loss*, weight gain, moon face, mouth sores, migraines, vulnerability to illness*, and too many more to list.
[*’s indicate symptoms I’ve encountered]

5.) About one-fifth of people with RA develop nodules which are lumps of tissue under the skin (normally near the elbows). I’ve had a few and these things are a freakin’ pain! They’re really gross looking too! (Mine have been on my hands mainly.)

6.) A symptom that differentiates RA from other forms of arthritis in diagnosis is symmetrical pain. This means that if the left wrist hurts, the right wrist probably hurts too. This is a strong indicator of RA.

7.) Doctors look for many different things to diagnose a person with RA. One major clue is the “RA Factor”. This is a genetic marker called HLA-DR4, which is a marker that plays a significant role in helping the body distinguish between its own cells & foreign invaders. This isn’t a fool-proof way of diagnosing RA, considering that 20% of the 2.1 million people with RA do not have the “RA Factor” in their blood.

Famous People with RA:

Lucille Ball from “I Love Lucy” was diagnosed as a teenager.
Camryn Mannheim from “The Practice”.
Kathleen Turner, a famous movie actress.
Renoir, an impressionist painter from back in the day. It got so bad in his hands that they had to tie his paint brushes to them and eventually he gave up painting all together.

 

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