Rheumatoid Arthritis is one of those infamous invisible diseases…if you’re lucky. If you’re lucky, the doctors diagnose you in a timely manor so physical aspects of the disease don’t begin to mutilate your body. If you’re not lucky, your fingers and toes begin to curl up and take on a new form which you cannot control. It repulses you to look at your own joints and limbs. You want to crawl into bed and cover your head without ever making a public appearance again. Unfortunately you can’t do this as you’re a single 23 year old girl with bills to pay.
You just graduated college so you are thousands of dollars in debt and living in an urban apartment that costs more than a half of your monthly salary. Just weeks ago you were jet skiing at a friend’s weekend cabin without a care in the world. The sun was shining down upon you, your hair was blowing wild in the wind and all you could think about was the promise of your bright future. You just landed your dream job at an advertising agency making a less than satisfactory salary, but hey you’re really MAKING it, right? That’s how it seems until you wake up one day, unable to move your shoulder. When you try to squeeze your hand or fingers together, you cry. You’re such a strong women, but you cry when squeezing your fingers together? What’s wrong with you? Why are you acting so weak?
The orthopedic specialist says it’s just tendonitis, wraps you in a shoulder splint and tells you to take it easy for a few weeks. The pain becomes so unbearable but you push back those tears, go to work and sit at your desk like a good worker bee for 55 hours a week. You try aimlessly to type with one hand for days and then weeks but the pain doesn’t end, it starts spreading. Next your feet start going numb, both of them. You can barely get out of bed in the morning because your feet start burning to the point that you have to peep out of the sheets to make sure there hasn’t been a house fire in the night. The podiatrist says it’s just plantar fasciitis (an inflammatory foot disease which comes and goes, causing minor pain and swelling) due to all the jogging in the months and years prior. It’ll go away, the doctors says, just give it some time. At this point, you have your shoulder in a splint and you’re limping at the same time. How did you go from jogging and jet skiing to this invalid of a person at 23 years old in just a few weeks?
Six months pass and you are juggled from physician to specialist to orthopedic to podiatrist when someone finally decides to take your blood and test your Rheumatoid factor. They finally say you’ve been diagnosed with Rheumatoid arthritis. They say that this explains all of the pain and curling of your joints. Arthritis? Isn’t that an old person’s disease? I think my grandmother has arthritis in her ankle… Why does my whole body hurt? What does Rheumatoid mean? How did this happen? What did I do wrong? I am too young for a chronic disease. There is no cure? Will I feel like this for the rest of my life? No one in my family has Rheumatoid arthritis. Those are just a few of the thousand thoughts that cross your mind the first time you hear your diagnoses. This is when you realize that your life is about to change… forever.
This blog is the first of a series on what it’s like to be diagnosed with Rheumatoid Arthritis.
Hi Katie-
I didn’t realize this was you last night when we were sitting next to each other at the Board meeting. I would have told you how much I like your blog! I really don’t want to have to say that I’m happy to have found other people who can relate to what it is like to live with arthritis, because I wish there weren’t others that had to endure the pain. But, “normal” people can not even fathom what we go through, and I know just what you mean about not wanting to even look at your own joints.
I have had most of the same thoughts and worries since being diagnosed. Thanks for writing and sharing your experiences!
-Melissa
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Thank you so much Melissa! I’m glad you’ve had the opportunity to read some of my blogs. Isn’t it such a small world? We were just breaking bread together the other night. Too funny. I hope today’s a good day for you! And I’m looking forward to seeing you at the walk on 5/22! Take care.
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No problem Katie! Sorry it took so long for a response, for some reason I didn’t get an email notification that you had written. Not sure why, but something told me to check back here.
Things are going well. I consider every day good when I can get out of bed! 🙂 I’ve recently started taking ballroom dancing lessons, which I never thought I would be able to do, and it has been great!
Sorry I missed everyone at the walk. Silly me planned a family vacation over that weekend. I was a bit bummed that I missed out on the fun.
Thanks again for the blog and I hope all is well for you.
-Melissa
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We missed you at the walk Melissa! It ended up being such a perfect day in Chicago. I hope you’re having a GREAT summer. Let’s catch up soon!
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I love reading your blog! It is such a source of strength to read about others who are going through similar circumstances. I too have recently started a blog about my journeys with RA @ http://madrewithra.wordpress.com/
Hope you’ll stop by. Keep up the great writing!!
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I appreciate your kind words hot mom with RA. I love your blog too and have highlighted it on my page with the hopes that my readers can look to you for inspiration also.
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I have RA and I had it at age 33 and now I’m 36. My life is different now compared to the kind of lifestyle I was living many years ago. My advise is … do not nurse the pain, do not live a sedentary life, live each day as if you do not have the pain. Swimming and stretching make wonders and do not take medications that will kill your kidneys. Good luck.
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Hi Samantha – Great advice! Keep moving and stay active 🙂 I wish you the best of luck too. Thanks, Katie
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Hi katie, i love reading your blog! I wd nt say that i am happy to read that there is someone going through the similar pains and circumstances like me , i wd rather say that your blog is a source of strength for me
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Thank you Mank! That is a very sweet thing to say and it’s one of the things that keeps me inspired to continue writing 🙂 All the best, Katie
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I agree with your A Day in the Life… Rheumatoid Arthritis KStew Vents about RA, fantastic post.
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Hey! I understand this is kind of off-topic but I needed to ask. Does running a well-established website such as yours require a lot of work? I’m brand new to operating a blog but I do write in my diary everyday. I’d like to start a blog so I can share my own experience and thoughts online. Please let me know if you have any recommendations or tips for brand new aspiring blog owners. Appreciate it!
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I agree with your A Day in the Life… Rheumatoid Arthritis KStew Vents about RA, great post.
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Amazing blog! Is your theme custom made or did you download it from somewhere? A design like yours with a few simple tweeks would really make my blog stand out. Please let me know where you got your theme. Bless you
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My dtr was diagnosed 13 years ago. She experiences stiffness and aches but is very over weight and has not developed any contractures. In fact we thought maybe she was misdiagnosed. Now she has pericarditis and a module in her lung! Can this develops before contractures? Her des are being very vague and shuffling her around.
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Oh that’s just awful 😦 So sorry to hear about your daughter. I’m not familiar with contractors so I can’t speak to whether or not the lung is module is related. I hope you’ve found dr’s that can pinpoint her issues soon.
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Katie,
I got tears in my eyes as I read this – it felt so close to home. I was just diagnosed with RA at 29 and feel way too young to be dealing with this (among many of the other thoughts you so well portrayed). 23 is a tough break. Thank you for this blog. Hearing about your experience makes me feel less alone this.
*hugs*
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Hugs right back at ya. xx
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Katie,
My name is Katie and I was diagnosed at 23 as well. I have goosebumps right now because every RA story I have ever heard has been different from mine (as most RA stories go) but yours is almost exactly the same! One morning (well 3 a.m.) I woke up with excruciating pain in my right shoulder. I was told it was tendinitis, given a cortisone shot and a sling and went home. The next day or two it was in my knees and then my foot. I was still in a sling so I didn’t want to complain about the other things. Then I felt it in my hands and about a week later I woke up with it in the opposite shoulder. That’s when I knew it was all related and went to the doctor and they decided it was time to take a blood test.
You are so right, from that moment on my life was never the same. Here I am 4 years later (on orencia) and was flare free for 5 months until this morning I woke up completely unable to get out of bed. Forever is forever.
Thank you for your blog, I found it today and it’s just what I needed to get me through.
Katie
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Hi Katie – Thanks for reading my blog and reaching out… So sorry to hear about your RA being forever. I am currently having right shoulder pain too that is so excruciating I could scream. Sounds like we unfortunately have so much more in common than our names. I hope you get to feeling better soon and please keep in touch.
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