[Update: I want to greet all the readers from the Arthritis Foundation. After @Arthritis_Org tweeted this post today, site visits have increased more than I could have expected. Thanks, you guys, for stopping by to read. We're all in this together, and I'm glad to share my story with you all. Thank you for being strong in your own lives. There is hope and life in spite of the pain of Rheumatoid Arthritis. Believe that.]
Last night, I shared something about my childhood on Twitter that I’ve never shared before. It’s an important part of my life story, but I had always wanted to keep it quiet in the past.
I was asking questions about Health Insurance for independent consultants / contractors like myself, and I decided that I probably wasn’t the only person in Austin with a life story that involved chronic illness. I might be the only one who had Juvenile Rheumatoid Arthritis at age 13, but I’m sure that the city is full of people who have survived challenges in the past. Kate Voth, who has survived cancer several times, comes to mind.
When I was 13, I was normal and healthy, played football, loved it, all that stuff. Then I started getting these really weird fevers and joint pain all over my body. Within a few months, the fevers were spiking at 103 Degrees every day, and the joint pain was keeping me from walking around much. I was about 5’10″ but I dropped down to about 120 lbs and nearly died in the hospital from complications that winter.
Juvenile Rheumatoid Arthritis meant that my body’s immune system had turned against my body and was attaching my joint and connective tissue. My case was very aggressive, and I don’t have a joint in my body that hasn’t suffered significant cartilage loss. Things don’t quite bend as well as they ought to, and certain movements, normal for other people, can be painful for me.
Things got better, and by the time I was 15 I was on the swim team, feeling healthy and living a pretty normal life. Then my hips stopped working over Christmas break 2001, and I spent the next 18 months not walking. I kept up with all my classes through this great program the school district had to send a teacher around to collect all my assignments and visit me twice a week to teach me the math I couldn’t figure out on my own.
In the summer of 2003 finally found a good orthopedic surgeon, Dr. Greenway, who replaced both of my hips with ceramic replacements in one six-hour operation that June.
The X-Rays of my hips immediately after surgery. You can see the screws attaching the socket to my pelvis.
I remember waking up thinking this is exactly like it looks in a movie with bright fluorescent lights gradually coming into focus, hearing a nurse say, “He’s coming to, go ahead and call the parents.”
They wheeled me into a room and the next day a physical therapist strapped a belt around my waist, pulled me up out of bed and made me stand up. I still had the epidural and catheter attached, and I couldn’t feel my legs, but they were going to get me walking again. The next day, I took my first steps with fake hips.
After 2 weeks of hospital Physical Therapy, they sent me home where I had a new lease on life. You see, before the surgery my hips had lost all cartilage and the bone-on-bone movement of walking was incredibly painful. The ceramic hips took all that pain away for the first time in more than a year. Learning how to walk again was easy compared to the bone-on-bone pain. Before the surgery, I couldn’t even get out of bed on my own.
I went back to high school for my Junior year and took almost a full course load. I would come home after school, put on a movie and take long naps. My body took about 2 years to fully recover from that surgery. I still have 7-inch scars along the outside of my legs.
Paying for college was a major concern for my family. We had good insurance, so my medical bills didn’t cause problems, but paying for college was going to be a big issue like it is for most middle-class families in America these days. Making matters more challenging, I wanted to go to the very private St. Edward’s in South Austin, since it was a smaller campus and had a Writing and Rhetoric program I wanted to join. Paying for college somehow worked out between my SAT scores (1380) and my various scholarships. Those scholarships made it possible for me to graduate debt-free, and I’ll always be grateful to folks like George Kozmetsky for their grants and scholarships that put me through school when I wouldn’t have been able to manage a job, classwork, and rheumatoid arthritis.
There were plenty of mornings that I couldn’t get out of bed because of the pain I was in, but I wouldn’t have traded it for anything. In order to make things easier on me, I rode around campus on a Segway. The State of Texas wanted to buy me a HoverRound, but I knew the Segway would make it easier for me to get dates. If you can’t fix it, feature it. The Segway did star in several first dates, and I became known for better or worse around campus as “The Segway Guy.”
I’ve never made a point of sharing Rheumatoid Arthritis publicly mostly because I didn’t want to burden people with it. Those of you who have had a chronic or debilitating illness can attest to how differently people can treat you when they know you’re in pain. I don’t want people to be on edge when they’re around me. There are other things to be worried about, and I think everyone has their own pain to focus on. I can handle my own as well as anyone else can.
I think this weekend I realized that I knew who I was apart from the illness, and I didn’t have to worry about anyone else getting confused about my identity. I’m Austin the Writer, Austin the Entrepreneur, Austin the Connector, Austin the Extravert, and now people will know that I’m also Austin who has Rheumatoid Arthritis.
The question of health insurance still remains. I have a good situation set up right now, thankfully, and there isn’t an imminent risk to my coverage. It is a temporary fix, though, and if there are ever coverage gaps, it would be an interesting challenge to fight a health insurance company to get back on their rolls. I represent a drain on their profits even thought I work very hard to focus my diet and to keep my body in good condition with Tai Chi. It’s an expensive proposition to pay for the biologic injection I give myself every night before bed. I’ve had great success in treating my own condition with diet and exercise, but I still need really awesome (pricey) medicine to function at a high level day in and day out. Without the medication, the inflammation usually comes back after about 48 hours and I end up back in bed like I was at 13. That may change someday, and I have high hopes about healing. For now it’s a daily process, and I’m in better health than I was last year and the year before that. Lot to be thankful for.
For my own sake, I’m making public acknowledgement of this in my blog. It’s healing for me to write about it and then put it out there to be read publicly. I think that the upside of sharing it outweighs any potential downside. Austin, the city, is a forgiving place that allows individuals to be themselves. And the nature of social media allows us to be genuine and flawed human beings one moment, and perfect the next because we always have an opportunity to change our status a few minutes later and be a different expression of ourselves. In that way, Facebook and Twitter do allow us to be more human more publicly than we ever have in the past. They allow us to be genuinely flawed like never before. I’m grateful for that.
I’m not sure where things go from here. I love being able to share my story with people, and there is more to it than this. It would be cool to hear from other people who have a similar struggle in their own lives. I’m open to answering questions or having coffee or lunch to talk about it, especially if you are just getting started with your own battle for health. I think someday it would be amazing to start a non-profit for kids like me who have Juvenile Rheumatoid Arthritis. We’d provide resources for their whole family to cope with the challenges and pain their children face on a daily basis, just like I did. The emotional and identity issues are as painful as the purely medical ones, but there is a great deal of hope and support to be found in the community.
If you continue to read, I’ll continue to put all this out on my blog.
Thanks for reading this far and sharing this part of my story with me.
I hope it’s been helpful.
Austin W. Gunter
PS: You can read all of the tweets here.
Tagged: arthritis, austin, Blogging, childhood, Facebook, hip replacements, identity, kineret, Rheumatoid Arthritis, stryker hip implants, Twitter
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34 Comments
So proud of you, Austin. I will read.
Hey Austin, check out Kare360.com if you haven’t heard of it. Thank you for sharing.
glad you put it out there..
Hi Austin-
Just wanted to thank you for sharing your story. My daughter has also suffered from SJIA since the age of 3 – She is 13 now and has already had both hips replaced. So… I can relate just a bit to your story
If you’ve never been to a national juvenile arthritis conference, I want to share with you what one of the most popular sessions is for parents. It’s hearing from young adults just like you. Because hearing your story, hearing about your struggles and how you have adapated and overcome gives people great rays of hope while they are traveling through dark days. You touched on many issues why people might hesitate to “come clean” with their RA truth – and that makes it even more wonderful that you have.
I just wanted to say Thanks! Thanks for sharing…. and I look forward to following your adventures….
Colleen – JIA mom
Colleen, thank you so much for sharing a bit of your story. I know exactly what your daughter is going through. It’s not an easy battle at all. I had the benefit of living a very normal life until 13, so I have strong memories of being well. I can only imagine what life would be like for someone who may not have many memories of life without RA. God bless you guys. Let me know if I can do anything to help.
Proud to know you, Austin. You write; I’ll read.
Thank you for sharing this Austin. I just love you! Can I share it on my facebook/ twitter?
Please do, Sarah. It’s put there for better or worse now
. I hope people keep reading it if it makes a difference!
Love you.! Your words are inspiring, as are YOU, the person. I remember some of those days when you were physically hurting. Michael and I are so proud of you.
As an RA person I can relate to this story. Thank you for sharing your story. It helps us to know that we are not alone in this struggle.
I agree. The pain can be so isolating, and it’s a challenge to get contact with the people we love sometimes. I’ve had to struggle with the idea that I was a “burden” from time to time. I remind myself that people love me and want to help out. I’m sure the same is true for anyone in a similar situation. You’re not alone!
Hey Austin,
I saw the link to your blog from the Arthritis Foundation and I wanted to
thank you for sharing your story.
I was finally diagnosed with JRA after a long battle when I turned 16, I’m
23 now. You obviously know what a struggle it is to deal with, it’s nice
to find people who can relate. You write, I’ll read. Hope you
Are doing well!
-Stephanie
Hey Stephanie, your story sounds similar to mine. The Juvenile Rheumatologist literally put me through about 12 months worth of medical testing to eliminate all other potential diagnoses before finally saying “well, I guess I’m going to have to treat this boy.” It’s a long battle for health, and it’s even harder since there aren’t clear-cut answers. You and I can’t just take a 7-day course of penicillin to get better.
Keep up the good fight. I AM doing well, and I hope the same for you. Don’t hesitate to say hey.
I understand so well, I have psoriatic arthritis and over the course of my life it has affected most of my joints and makes getting out of bed in the morning most difficult, both physically and emotionally. People around me truly do not understand the toll. Thanks for sharing your story Austin.
Elizabeth, that’s true. It’s hard to relate to people sometimes. I’m lucky to have a good group of friends around me who relate and want to listen when I need to talk, but also don’t worry about me the rest of the time. The second part is the more important one, in my opinion.
I just finished reading your story and I think you are very brave for telling it. I have also struggled with RA for 23 years. I would like to start my own blog about my struggles and my blessings..but I want to help others, not bore them to death..any ideas how to begin..other than, hi I have RA. Thanks and good luck to you. Oh and I will definetly read!
Hey Cyndie, thanks for the comment. As with any sort of writing, the way to begin is to begin. When I started writing this blog again in October of last year, I made up my mind to go ahead and publish content that I wasn’t satisfied with. I knew that if I kept it up, I’d find my voice and the “Bad” content would have just been steps along the way that my readers would eventually forget about. I think that is holding true. Look at the progression of my posts from October to now. I think the most important thing is to just start and be willing to make as many mistakes as it takes to get it right!
Finally ! Someone just like me. (tears).
I found out at the age of 35 that my hips were so degenerated that bilateral hip replacements were the only fix. I had to digest that and figure out how to tell my family, and soon after, lost a long career that I loved. I am now 39, and regular steroid injections into the Femur sockets keep me walking, and my Rheumatologist says to wait as long as I can to replace them. I await the day when my hips will give out…I can hear them crack and feel them pop out during the day and I just take another step and hope they are still gonna work at that time. Your story makes me feel better, I know replacements can really change lives. My Rheumatoid Arthritis has finally reacted to Enbrel injections, and I can walk most days without my cane. Praises to you, and courage to both of us.
RK, hip replacements were the best thing to ever happen to me. I would not have lived the last 10 years with such abandon without them. If there is a joint to be replaced, the hips are the best ones because they are such big and simple joints compared even with the knees or shoulders. Your doctor is a wise counselor, but you’re the only one who can make the decision for yourself – only you know your body. I tell people that knee and hip replacements are totally worth it as soon as those joints prevent you from living the life you love. The ceramic technology available now means they will last for 20-30 years. Imagine that many years pain free.
God bless you. Let me know if I can ever help you out.
That was very brave of you. It helps give people an awareness and understanding on where you are coming from.
Austin,
Hi fellow JRA I have had it from the age of 6 and am now 48. Had both hips replaced as well they were such a miracle and allowed me to be more of a mom to my 2 sons. They are 19 years old this year and will soon wear out and need to be revised but they have served me well! I make my ortho doc laugh when I tell him I am now a classic and I hope we can find stock parts when the time comes. JRA once defined me but it no longer does. I have finally come to see that I was blessed to have this struggle because it has shaped who I am and she is an amazing strong, loving, passionate and compassionate woman! I am working on my BS in Social work and hope to work with kids and adults that deal with chronic pain and illness and help others learn not to let their illness or disability disabled them!! Fight on little brother the journey is as important as the destination!
Michelle, your comment is inspiring. I’d love to meet you. You seem so full of hope and joy about living, qualities that I admire in anyone. Please keep me posted about your re-replacement of the hips. I would love to hear of how that goes and I’ll pray for the best outcome. It sounds like you’ve lived life on your terms, not the disease’s, and I admire you for that.
Austin, as a Parkinson’s patient I certainly understand your reticence. You want to be known for yourself not your disability. However, having worked with you in Tai Chi I can attest to the fact that you certainly do not allow your condition to define your life anymore than Parkinson’s disease defines mine. You are an inspiration. Shout it from the rooftops! You help so many others by telling your story. I realized that my tenacious determination in the face of a daunting diagnosis has been an inspiration to many of the incoming students who face challenges of their own. I stand as a “can do” example for them. And I have taken it upon myself to be a cheerleader for those who struggle with physical disabilities. They may slow progress some, but they shouldn’t stop anyone. Life is precious. It is to be lived while we can. You have chosen wisely, Grasshopper.
Jessi, thanks for your kind words. You’re an emotional inspiration to more people around you than you may realize. Thank you.
Excellent!
I was born with congenital hips. I had several surgeries as a small child on both hips. Forty years later, arthritis has set in. I have had my right hip and shoulder replaced. My left hip and my knees cause of a lot of pain. I went see a rheumatologist, but all he did was prescribe pain pills. I wish someone could tell me why my arthritis is everywhere.
Julie, God bless you. Sometimes there are no answers when we wish there were. It would make pain easier to handle.
Austin, thank you for taking the bold step in sharing your story and being completely honest with your feelings. For those of us facing a serious illness, the illness does not define us, but it does play a huge role in making us who we are, giving us a unique perspective on life. Sharing this integral part of yourself is the type of authenticity that’s refreshing, important in deepening relationships and absolutely inspiring. All of us fight personal battles every day–both big and small–and when we’re reminded that we do not fight alone, our burdens become a little bit lighter. It makes me happy to read that you’re feeling better now than in years before, and I wish you only the best moving forward. Stay strong, stay healthy and stay positive! You have a whole community here to support you. Cheers, my friend!
Kate, you’re an inspiration. After kicking cancer’s ass like 9 million times, you deserve to wear a tiara all day long and have all your colleagues call you Queen Kate as they genuflect in your presence.
No seriously, thank you for inspiring me to fight to survive and live my life. I admire your courage and unflappable optimism and I’m grateful to you for reading my blog.
Thank you for sharing your story. I can not imagine what it would be like to have arthritis pain as a teenager. Your attitude and courage are an inspiration. I do understand the pain, within the last year I have also had both my hips replaced and will soon have both knees replaced. I started a blog to write about my journey through my joint replacements. The good news is that for the last several months I have not hardly written about my OA because the pain relief provided by the hip replacements has made me so mobile and active, I have had many other things to write about. Good luck to you and I will continue to follow your blog.
Hey Theresa, thanks for sharing. It’s wonderful when we can forget about pain and just live our lives. I’m glad you’ve got other things to write about these days. Thanks for reading. I hope to hear from you again soon!
Austin,
Thank you so much for doing this , you write well. When I heard your story I had mixed emotions as a mother of two children with JIA of course fear. But then I focused on the hope, you are showing children with this disease, parents of these children, you can have a life. It does not have to define you. Also that it is OK to admit you have pain, my children feel embarrassed and shamed by this. I plan on sharing your Blog posts with them.
Keep it up-I am spreading the word and sharing your link!
Mostly keeping you in my thoughts…
Hugs,
Kim (mom to twin 8 y/o’s with JIA/diagnosed age 3)
Kim, keep the faith. The hope really is what gets us through anything. The happier I am, the more optimistic I can be, the freer I feel to take creative risks and live my life, the better it is. Give your children permission to do the same. They may get bruised along the way, but they’ll have a better quality of life. My rheumatologist always told me, “If your body will let you do it, you can do it.” I learned to set my own limits, and nobody else really knows what I’m feeling. I had to learn to tell people, “Hey, I’m fine, I actually don’t need a lot of help right now. Just treat me like a normal human being and forget about the ‘disease.’”
And I’ll offer, even though you haven’t asked. Diet is huge. Look for food allergies and then remove them. You’ll notice a difference in 6 weeks. Then make sure they are moving around. Tai Chi is what I do. Other people swim. Again, use my doctor’s quote above.
Let your kids feel as normal as possible. That means you can treat them like normal kids. Don’t cater to the disease unless they ask for help. Let them learn the difference and how to ask for help. That will be huge when they start to grow up and become self-sufficient. Asking for help, and knowing how to, is a big part of being human.
Final thought. I have found places to express my deeper emotions through writing. If they need to paint, or run around, or yell, or whatever, make it possible for them to do this. Even push them to find an outlet. Emotions are connected to inflammation, and to channel them is literally anti-inflammatory. No substitute for good medical treatment, but a fantastic addition, in my experience over the last decade.
Take the advice and apply what works, discarding the rest. And if you ever want to get in touch with me, I’m happy to talk. austin@austingunter.com