My Journey with JRA

 My name is Shelley-Rose Cook, and I’m going to be a senior in High School in the fall. I’m 17, and very soon going on 18! 

I’m told I started exhibiting JRA symptoms when I was about 1-2 years old, and was finally given the JRA diagnosis when I was about 4-5 years old. I’m from south Florida, but due to my parents’ jobs, I have been residing in Europe basically my whole life, and going to one of the American schools overseas. However, I’m moving back home to the US in one year, because I will be starting college! I have JRA, which recently developed into Rheumatoid Arthritis, as well as Endometriosis.

In terms of the effect of the illness, I wish I had been told how my life would be affected. Although I was very young when I was diagnosed and placed on a string of meds, due to an unfortunate series of events about three years ago, I don’t really remember anything from before that. As such, I do not really remember what it was like to have RA. Ironically, during and after the series of unfortunate events, I was lucky enough to experience a two-three year “hiatus” of the RA symptoms. However, over the last seven months, my RA has come roaring back. Currently I have it in both feet, knees, hips, and both wrists. In addition, the RA has been causing a long & serious bout of tendonitis too – located in both my feet, both hands, and both knees. It’s been pretty painful! Another thing I wish I was told – all the side effects of the meds! Frequent nausea/vomiting, headaches, infections (and not just limited to the sinuses…), etc. Sometimes I get sad and/or somewhat depressed because I’m “young, supposed to be out having fun and being stupid”, and all that fun stuff. However, although the RA has affected my life significantly over the last six months (i.e. I’m not able to go out and have fun with my friends, and I have to miss a lot of school due to infections, severe flares, and hospitalizations), I have tried not to let it affect my life too much. I have a lot to look forward to in my life right now! One of the things I’ve learned about having RA is that you can't outsmart or beat your illness, but you can & will manage it well. It has taught me how to set my own limits, and how to communicate them to others. I’ve also learned to enjoy the little things in life! One of the things I’d like to share with others or newly diagnosed people with RA is that you’re not alone. There are many other people out there with the same or similar illness. It can and will be difficult to find a decent health care professional, and at the beginning it’ll be hard to navigate your way through this illness – all the medical terms, the effects of the illness on your body and your life, all the medication(s), etc. But fear not! There are plenty of resources available for you and your loved ones/those helping you.   

Side effects of the illness and medications will also be a big blow, as well as the downs of having to suddenly deal with this new & prominent issue. However, you'll eventually come to a solution, find medication(s), and a system that works for you. Your life will certainly be different than it was, but you can still manage to live your life.

Having to learn & deal with RA has come at an unfortunate and difficult time in my life - I'm 17. At this age, everyone your age is out; living their life - being young, foolish, and living their life as they want. The RA, among other personal issues, has been known to lead me down a dark path during and at various times, which is and can be really scary. Somehow I’ve managed to come out the other side a better person, which I count as a blessing! If I had to sum up one silver lining about having RA, I'd have to say it's made me mature beyond my years, for which I am grateful. Henry Ford once said, “Whether you think that you can, or that you can’t, you are usually right.” This quote has and continues to help me significantly! 

 IAAM's JA Awareness MOVEMENT....

 I was honored to have Shelley-Rose Cook as the first JA Guest Blogger on both of my blogs. Thank you for sharing your personal story. If you have any questions for Shelley-Rose, please ask the questions through me and I will send them to her. If you have a JA Personal Story you would like to share, please email your story to Dana at danalm_iaam@yahoo.com with your title, blog name and URL, your name as you would like it published on my two blogs and on IAAM's Facebook Public Pages. If you do not have a blog, that is OK, you can still share your story, simply send me your story in a Word Document with your picture attached and I will put it into my blog for you. It is that simple. ;-)


Whether you have JA, are a parent of someone with JA, or care for someone with JA, I am looking for Guest Bloggers!!!! It is JA Awareness Month, and IAAM is launching its Juvenile Arthritis Awareness Movement! We'll launch this initiative on Monday July 9th so check back! Until then, a sneak preview: JA isn't the same as having Degenerative Arthritis and YOU will have the opportunity to tell the world why! Stay tuned, it's about to get goooood ;).  Watch out because IAAM's new JA Campaign is gonna blow JA Awareness out of the water! In true IAAM style it will be a little out-of-the-box and will allow YOU to shine! 

This poster was designed by IAAM for World Autoimmune Arthritis Day 2012 (held on May 20th). This JA Awareness Movement will be the 1st of many subjects we will revisit from WAAD. And you thought World Autoimmune Arthritis Day was over...pshhh, you're not getting rid of us that easily ;)

ATTENTION Juvenile Arthritis Bloggers: Looking for Guest Bloggers!

Attention Juvenile Arthritis Bloggers, Writers and Authors. Whether you have JA, are a parent of someone with JA, or care for someone with JA, I am looking for Guest Bloggers!!!! It is JA Awareness Month, and IAAM is launching its Juvenile Arthritis Awareness Movement! We'll launch this initiative on Monday July 9th so check back! Until then, a sneak preview: JA isn't the same as having Degenerative Arthritis and YOU will have the opportunity to tell the world why! Stay tuned, it's about to get goooood ;).  Watch out because IAAM's new JA Campaign is gonna blow JA Awareness out of the water! In true IAAM style it will be a little out-of-the-box and will allow YOU to shine! 

I am looking for Guest Bloggers to appear on both of my blogs and on IAAM's public Facebook pages. If you are interested in being a Guest Blogger, please send me a Personal Story of JA. It can be about you personally, your child, someone you know or someone you take care of. We need to spread AWARENESS so make sure your story is a true representation of a person with JA to help others understand what it is like to live with JA, to love someone with JA and to be a child with a disease that is all too often confused with what old people get. 

Email your Personal Story of JA to Dana at danalm_iaam@yahoo.com and include the post title, the blog title and url. If you do not have a blog and have it in Word, then send me the Word Document. Make sure you give me your name as you would like it to be published on my blogs and the IAAM public Facebook pages. Also, please give me a couple sentences that summarize your story. I will try to publish all the stories that I receive. Thank you!

This poster was designed by IAAM for World Autoimmune Arthritis Day 2012 (held on May 20th). This JA Awareness Movement will be the 1st of many subjects we will revisit from WAAD. And you thought World Autoimmune Arthritis Day was over...pshhh, you're not getting rid of us that easily ;)

JA Isn't The Same as Having Degenerative Arthritis...

IAAM is gearing up to launch a MAJOR JA Awareness Campaign in honor of JA Awareness Month and in true IAAM style it will be a little out-of-the-box and will allow YOU to shine!
 
We'll launch this initiative on Monday July 8th so check back! Until then, a sneak preview: JA isn't the same as having Degenerative Arthritis and YOU will have the opportunity to tell the world why! Stay tuned, it's about to get goooood ;). 

This poster was designed by IAAM for World Autoimmune Arthritis Day 2012 (held on May 20th). This JA Awareness initiative will be the 1st of many subjects we will revisit from WAAD. And you thought World Autoimmune Arthritis Day was over...pshhh, you're not getting rid of us that easily ;)

Chronically Guilty Video Blog

Please read my new blog post in my new blog Chronically Mommy, Chronically Guilty Video Blog.
http://youtu.be/KqVIqYm0qx8

People like myself CAN raise a child; there's no reason you should be denied this beautiful experience!

Please read my new post in my new blog Chronically Mommy

People like myself CAN raise a child; there's no reason you should be denied this beautiful experience!

First Video Blog--Just Checkin' In!

I have tried and tried and tried but cannot get my video from my mobile phone to post on my blog. I think I saved it in the wrong format. So I will have to just post it as a link. I will be having some of my blog posts as videos to make them a bit more personal and intimate so you can get to know me better. So this is the link to my first video blog to check in with you all. My parents are visiting to help me with my son Michael while my hubby is out of town at a conference, so I will follow up with you all very soon about my doctor appointment and how I am doing. Blessings and healing to everyone!!!!!!!!!!!

Also, I will have my new blog about being a mommy with chronic illness, pain and disability completely up and running in the next couple weeks. I am so excited about it too. I began the blog a year ago, but I have just recently got around to decorating the site just how I had it pictured in my head. I will begin blogging more often again on both sites as well as having my radio show regularly. It has been so crazy. I guess that is just life...shoulder replacement, adoption, adoption finalization, raising a child with chronic pain and disability, right hip collapsing, hip replacement...so many things can happen in life. 

So here is my first video blog...more to come!

https://skydrive.live.com/?cid=8f63b8b15cf0f825&id=8F63B8B15CF0F825%21262

I Never Knew What I Feared The Most Until I Became A Mommy...

This blog post is for the MOWer's topic "Fear."

I have known for years about my autoimmune arthritis (Psoriatic Arthritis, Sjogren's, possible A.S. and Lupus). I have known even longer about my Avascular Necrosis (of the hips, shoulders and knees). When you have diseases that are chronic like this and that have serious effects on the body as a whole, you have a lot of fears about what could happen to you in the near future, in the distant future. Other people don't always realize how frightening it is to live your life with all these diseases, syndromes and conditions. Yes, you get used to the chronic lifestyle to a certain extent, but you never truly erase from your mind that other people are living normal, healthy lives every single day. For those that were always sick, you would not necessarily remember feeling normal unless you were not diagnosed until you were older, and you felt well even though you were sick. But for those that actually were normal for period of time, you may actually remember feeling well, and now are able to compare normal to chronic. For me, I give the age 19 when I began going to doctors by myself. I was in college and on my own. I knew something was wrong with me and sought out help to find out exactly what was wrecking havoc on my body. In hindsight, though, I was one of those people who was possibly always sick but did not necessarily remember feeling sick because I wasn't diagnosed with anything until I was older. I might have felt well even though I was sick.

Fear. I fear being diagnosed with yet another autoimmune arthritis. I fear the side effects of my meds, especially the side effects that I don't see, the silent ones that could be harming me and I don't even know it. I fear that my meds will stop working. I fear the pain will get worse. I fear I will need more pain meds. I have been on the same amount of pain meds since 2002, and have not changed nor do I intend on changing it. I fear getting sicker. I fear that my hubby will decide I am too much to deal with and leave me. I fear that I will end up all alone.

My biggest fear, now that I have a son who is 15 months old, is that I will not be able to be the best Mommy I can be. I know that I love my son with all my heart, and he loves me as well. I know that I would do anything for him, for his safety, for his happiness, to see him laugh and smile. What happens if a day comes when I can't do something for him? That is my biggest fear.

When I was told that the autoimmune arthritis had gone to my spine, neck and S.I. joints, I got so scared, not for me that I would have pain, lack of mobility or anything about my self. It was purely selfless. It was all about my son. What if this limited me with my son? I was so afraid. I had to do something. I am making sure to keep on exercising to keep my spine gently moving all the time. Aqua aerobics and belly dancing is working best for me. I feel really great doing that, and it is helping with the pain and mobility. When I stop moving, the stiffness, decreased range of motion and pain come back full force!

Then, an even bigger fear occurred! I had already had my left hip replaced in 2003, and then my right shoulder collapsed in October, 2009. I had my shoulder replaced in March 2010. Nine months later, we adopted our gorgeous little boy! I felt like it all happened in that order so that it would be easier to take care of him. I had a brand new shoulder and one good leg! I thought I would be able to keep up with him easier than say 10 years ago even. Well, that was true, three months ago. Then, the right hip started, clicking, sticking, popping and giving me more pain. I knew what it meant, but didn't want to believe it. I feared the worst.

My orthopaedic surgeon told me it was in the final stage of Avascular Necrosis, and it needs to be replaced as soon as possible. I am doing my best to keep up with a 15 month old as he races through our home. He throws a ball and runs after it now! He wants to play all the time. He dances to my belly dance music with me too. I am doing OK with the pain. I am still keeping up with my son and housework and even still belly dancing. I just fear that I am going to lose out on some important time now with my son. I am going to get it replaced May 10, 2012. That means I will have all summer to rehab. I won't be able to hold my son for a few months, get on the floor and play with him, bathe him, clothe him, run after him and play like he does.

So I am watching my biggest fear unfold before my eyes. I am losing control of my body again. The hip is collapsing. I am losing mobility fast. Soon I will have my surgery, which is a pretty extensive surgery by the way! Then rehab is a bitch! At least 3 months of intense rehab without holding and being the main caregiver/caretaker of my only son~perhaps the only son I will ever have.

So to get through a fear that is unfolding before my eyes, I must show courage. My son must see that his mommy is brave, strong and courageous. I want him to learn that although his mommy has all these health problems, she will never stop loving him. I will always be his mommy. As soon as I recover, I will be better than before, a new model! We will run and jump and play more than before. I don't think I will put him down. He will forget how to walk himself!

Children of mommies with chronic illnesses are the strongest, bravest, smartest, and also they are able to show more empathy and sympathy because they lived with their mommy and helped their mommy. I think it teaches them how to love, care and nurture. I shouldn't really fear because I am raising the perfect child!