Calling all Chicago folks affected by Rheumatoid Arthritis!
Innovations Consulting Group is holding a FREE series of workshops for patients with Rheumatoid Arthritis this Thursday, 6/14 at the InterContinental Chicago Hotel located on Michigan Avenue from 6PM-8PM.
Hey all – The summer always seems to get away from me. I cannot believe it’s already August 1st. Where does the time go? It’s been a while since I’ve written, so I wanted to post a quick note to give you some updates on a few things.
KStew Vents about RA finally has a home on facebook!
I have to admit, I’m technologically challenged so it took me a while to figure out how to integrate my blog with facebook, but I’m finally starting to get a hang of this internet thingy. Visit my facebook site for more frequent postings with links to articles and other important stuff going on in the Arthritis community.
I’m becoming a super sampler!
I’ve been in touch with some product developers who are creating really awesome tools to make the lives of us rhuemies easier. As I test these products and post reviews, I am looking for help from my readers to give feedback on similar products they’ve found. Afterall sharing is caring.
The details for the 6th Annual Chicagoland Arthritis Foundation event at Rockit Bar & Grill are almost finalized.
Once the ticket sales link is active, I will be sure to send it out to everyone. In the meantime, be sure to save the date for Friday, September 9th to attend this hot happy hour event.
What used to be called the Arthritis Foundation Associate Board is now officially going to be called the Arthritis Foundation Associate Leadership Council.
Just wanting to clear up any potential confusion for those who might already be connected to the group.
If you’re not already connected and you’re a young professional from Chicago looking to get involved in the community, please drop me a line for more information about us! We’re always looking for new recruits.
Chicago’s annual Jingle Bell Run 5K will take place at Peggy Notebaert Nature Museum on Saturday, December 17th. The festivities kick off at 9AM.
The Chicagoland Associate Board of the Arthritis Foundation is hosting our annual event at Rockit Bar & Grill Chicago on September 9, 2011. We are hoping you will join us that evening to create awareness for the #1 form of disability in America. If you attend our party, I promise you will have the night of your life! Free drinks on the house from your’s truly 🙂
Dear Friends & Readers,
Please save the date for the Chicagoland Arthritis Foundation’s annual shin-dig at Rockit Bar & Grill in Chicago on September 9, 2011. It’s unlike any other party we host all year. One thing is for sure, GREAT times will be had. Also, please “like” our request to recruit Brian to our event on facebook. If he shows up, we’ll have the opportunity to raise more money and awareness then we ever have before at the annual bash.
According to the Mayo clinic definition, Rheumatoid Arthritis is an autoimmune disorder which “occurs when your immune system mistakenly attacks your own body’s tissues. In addition to causing joint problems, rheumatoid arthritis can also affect your whole body with fevers and fatigue”.
Let’s think about this for a moment… That means my immune system really attacks my own body’s tissues? Yes, once you are diagnosed with this debilitating disease, you learn that your body will constantly fight YOU for the rest of your life. Imagine that… Your body has no control of your body. Scary stuff.
In my case, pain moves throughout different joints in my body, but it does so symmetrically. So if my left wrist is in agonizing pain, my right wrist is sympathetic and the pain in my right wrist becomes excruciating too. The same is true in my toes, my fingers and most often.. my hips. My hips burn constantly. When my disease flares up in my hips, knees or ankles, I can barely walk let alone make my way up the stairs to my second floor bedroom. When my fingers are affected, it’s impossible for me to wash my hair, brush my teeth or button my own fly. Thank God leggings are back in style!
While it’s true that research and medicine have come a LONG LONG way over the past 5-10 years, they haven’t yet come far enough. I started trying various drug cocktails about five years ago now. From Methotrexate to Prednisone to Humira to Enbrel to Sulfasalazine to Naproxen to Vicodin to Celebrex and still no 100% relief?! Unbelievable. My current flavor of the week is a combination of Humira, Methotrexate and Sulfasalazine. Who knows what’s next? My doctor recently mentioned Orencia which is given through transfusions once a month. Sure, I’ll find the time to spend an entire day at the doctor’s office once a month between working all day and going to school in the evenings…
All of that being said, I’m starting to get the feeling that I’ve painted myself as an absolute pessimist between my last two blog entries. I promise you dear readers, that is not the case. In fact, it’s amazing what happens to people when God throws some obstacles in their way. Nothing is impossible! More on that later.
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.