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5. Acceptance

If this isn’t crippled, then I don’t know what is…
The scariest part is realizing I’ve already accepted it. I’m not angry. I’m not sad. I’m not even embarrassed anymore.
           This is me. This is my ‘normal.’

My family and friends have accepted it as well. I don’t get the, “So today’s a bad day, huh?” comments anymore when they see me with my boat (aka: walker). They know. Everyday is a bad day. The pain is at a constant ‘9’ and the swelling means my favorite skinny jeans aren’t even an option anymore. People rarely make fun of me anymore. I guess this “invisible illness” is beginning to be visible. The only thing I had left was the ability to drive and now that’s basically gone too. 


I’m done trying to hide my boat or use it only when the pain gets unbearable. Why? Because its constantly unbearable and I’m exhausted
Exhausted of pushing myself beyond the point of no return just to keep this secret. This secret that I can do more than I really can. That I don’t need you to help me. I can’t carry my dirty clothes to the laundry room. I can’t change my own sheets or cut my own meat or style my own hair. I can barely stand up in the shower for more than 5 minutes! I can’t keep all this a secret any longer and I need be honest

So here I am, being honest:

There’s a lot of things I can’t do on my own. 
Your 65 year old grandmother can probably do more things than me, but that’s OK. 
I love being me and even though I am practically crippled, there is one thing I can still depend on being able to do…
I can still laugh and I can still have fun, no matter what happens to me. Even if I never find a treatment that works and I never gain my independence, I know I will always be able to smile and enjoy my life. 

Doctor Radio

This morning I got to talk to Dr. Jonathan Whiteson on Doctor Radio about what it’s like to be a young person with Rheumatoid Arthritis. It was so exciting and I feel so grateful to be given the opportunity to bring awareness to this disease. If it helps just one person feel better about what they’re going through, it was well worth it. 

We all go through difficult things in life, whether its disease, like me, financial troubles, or family stuff. Life is a journey with many ups and downs, and this my story.

Being a young person with Arthritis [or any invisible illness, really] can be hard. There’s a lot of judgement. People don’t expect to see a teenager walking with a cane or parking in a handicapped spot. There are a lot of stares. A lot of questions like, “What’s wrong with you?” or “What happened to you?” 

I have never encountered a person who I’ve told, “I have Rheumatoid Arthritis,” to that knew what I was talking about. The response is always, “how is that possible?” or “What’s that?” because they assume that only old people get Arthritis. 

I also look pretty healthy on the outside, so they assume that I can do things that I really can’t. 
It’s like this, if you see a grandma having trouble lifting a 5 lb bag of flour at the supermarket, you would automatically help her because you’re already aware that old people can’t do things young folks can. You’re not surprised when you she asks you to help her take out the trash because it’s too heavy. 
However, what people don’t realize is that there are hundreds of young people with Arthritis that have those same exact limitations! 
Another hard part about being young with Arthritis is the amount of time that goes by while we’re waiting for these treatments to work. That’s a big thing for a lot of us. 
For me, I’ve been through 5 failed treatments over the last 5 years. In the last 5 years, I’ve also had to drop-out of college, quit my job, and move in with my husband’s parents because I need help doing so many little things. 

At the same time that others my age are enjoying independence, I’m loosing mine and my 20s are slipping away. 

I’d love to just hit “pause” on my life till I find a treatment that works and I get better, but I can’t. 
A lot of people say, “Life is short” or “YOLO”, but I don’t. I believe Life is a long journey, and I have plenty of time to achieve my goals. The university isn’t going anywhere! It’ll still be there when I’m better and I can actually keep up with the other students. 
In the meantime, I’m not just laying around doing nothing! I’m doing something I’m extremely passionate about, and that’s helping others and raising awareness that Kids get Arthritis too!

*To hear more of my conversation with Dr. Jonathan Whiteson, listen online at Doctor Radio‘s the Rehab Show.
**Get more infomation on the Vectra DA diagnostic blood test I talked about on the show!
***Do you have RA? Connect with all of us at RAconnection.com

2. Anger

I’m trying really hard to believe these words right now. I feel like I have so many dreams, so many hopes for the future and I’m just waiting to get better so my life can restart. 
Don’t get me wrong, I’m not sitting around doing nothing. I’m doing my best and I do believe my best is good enough.
 I just want to be able to do more. 

Lately I’ve been feeling impatient. Like God made a waste of me by giving me this. On the days I’m feeling really blue, I think to myself, “God, why!? Why did you do this to me?? I could’ve been so great! I could’ve been successful. I could’ve had my master’s degree by now. I was such a hard worker, smart even! Why did you make me this way to just waste all that ambition on a cripple?”
I didn’t realize how angry I was. I know the real answer in my head. He probably gave me this because he knew that otherwise, I would’ve never slowed down long enough to appreciate the little things. Or maybe he wanted to get my attention and knew that my path would never come here if he didn’t give me a nice big obstacle.

Honestly, I can deal with the fact that God gave me Rheumatoid Arthritis. What I’m having trouble with is why can’t I have one successful treatment? Please, God!! I’ve had 5 failed treatments and I’m not sure I can deal with one more. I want to move on with my life! I want to get over this chapter of looking for a treatment that works on me. I want to be able to say, “XYZ works for me and look at all the things I can do in spite of Arthritis.” 

I think sometimes you feel happy and you’re dealing with all these things and then it’s like a pin drops on top of you and you break down because it finally gets to be too much. You think to yourself, “I can handle this [enduring the constant pain], I can handle that [the nausea and other side effects].” But then you start loosing the ability to do something you love and it’s overwhelming. 

Having this for 18 years has been a roller coaster. I always say, it’s like going through the 5 stages of grief over and over again, but I have to keep hoping.
Believing that everything will be alright. 
Maybe not today but eventually.

2.2.14 is RA Awareness Day!

Since today is Rheumatoid Arthritis Disease awareness day I think we should find out what RA actually is! Alongside me, there are 1.5 million Americans and 300,000 children who fight this life-long battle on a daily basis.
There are many misconceptions about Arthritis
so let’s educate the world and share this with everyone we can to support 
Rheumatoid Arthritis Disease Awareness Day!

Rheumatoid Arthritis

Find more resources on living with arthritis by visiting arthritistoday.org
Arthritis Today

MORE ABOUT

Rheumatoid Arthritis

Rheumatoid arthritis (RA) is an autoimmune disease in which your body’s immune system – which protects your health by attacking foreign substances like bacteria and viruses – mistakenly attacks your joints. The abnormal immune response causes inflammation that can damage joints and organs, such as the heart. Early diagnosis and prompt treatment is the key to preventing joint destruction and organ damage.
People
About 1.5 million people in the United States have rheumatoid arthritis (RA). Nearly three times as many women have the disease as men. In women, RA most commonly begins between ages 30 and 60. In men, it often occurs later in life.
Symptoms
The severity of the disease can vary from person to person. Symptoms can change from day to day. Sudden increases in symptoms and illness are called flares. A flare can last for days or months. Key rheumatoid arthritis symptoms are pain, fatigue and warm, swollen, reddish joints. Long periods of joint stiffness in the morning are common. Inflammation in the small joints of the wrist and hand is typical. If a joint on one side of the body is affected, the same one on the other side is usually affected, too. 
Treatment
There is no cure for RA, but there are a number of medications available to help ease symptomsreduce inflammation, and slow the progression of the disease. No one drug works for everyone but many people find treatments that are very effective. The goal of treatment is remission, a state when inflammation is gone or is very low.  A doctor, likely a rheumatologist — a specialty doctor who treats people with arthritis — should monitor your levels of disease activity, or inflammation, on a regular basis through exams and blood tests that reveal how well treatment is working. The doctor may add or change your medications or adjust the dosage after a few months, if the disease is still active. 
Self-care
Self-management is an important part of rheumatoid arthritis care. Staying physically active is the key to keeping joints flexible. Too little movement can lead to joint stiffness. Strong muscles protect joints. Overall fitness improves health in many ways. Managing your weight, eating a nutritious diet and getting a good balance of rest and activity each day are important, too.  
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