Blog Carnival Accepting Submissions Extended Thru Aug. 10!!

Do you still want to be a part of the Blog Carnival? Have no Fear!!!!!!!! The due date for accepting submissions for the Blog Carnival has been extended through Friday August 10th. This is so exciting because July is JA Awareness Month, and we are continuing the Movement with IAAM into August!!!

The Topic for submission is Why Is JA Different From OA?

This is extrememly important on so many levels. There are people out there who still don't know that arthritis can affect kids. The type of arthritis that affects kids is Juvenile Arthritis which is Autoimmune Arthritis which is different from our Grandma's Arthritis. It is not the same as a little arthritis in your knee!

Please send in your submissions and let us know why they differ! People need to know that when kids are sick from arthritis, it is often more severe and can be more life-threatening, but if they can catch it early, that is the key!!!

You can not be born with Arthritis but you can be born with Autoimmune Arthritis...Tell us about it!!!

Enter your submission in the Blog Carnival due Aug. 10th.  Let's continue JA Awareness. Email submissions to danalm_iaam@yahoo.com.

Let's Keep up the JA Awareness Movement!

Watch my recent video post total hip replacement...I hope it will inspire you. When someone has had a second hip replacement and a shoulder replacement and is in her 30's from AVN due to complications of Autoimmune Arthritis, people will realize that Autoimmune Arthritis is not the same as Osteoarthritis...Differentiate your diagnosis...Tell us why JA differs from OA...

I will give a prize to the blog post that has put the most time, thought and creativity into it...So...start writing!!

If I Could Do It; You Can Do It Too!

IAAM/WAAD is teaming up with the Arthritis Foundation (US) and EULAR to make WAD!

I am Dana. I have Psoriatic Arthritis, Sjogren's & possible Lupus & Ankylosing Spndylitis. IAAM Waving for WAD!

IAAM/WAAD is teaming up with the Arthritis Foundation (US) and EULAR (European League Against Rheumatism) to make World Arthritis Day (WAD), October 12th, a ginormous awareness event for all the groups of arthritis. In doing this, we are asking you to participate in the WAVE for WAD campaign!

It's simple:
1. Take a photo or video of you waving OR doing the wave OR riding a wave, etc. It is your changce to get really creative!
2. Submit it to: http://www.worldarthritisday.org/waving-photo-upload
3. Each wave counts for a wave from your country! Periodic mentions of which countries are in the lead will be mentioned. Let's each work hard to get our countries in the lead! Let's lift up those rankings, people!

IAAM is making it even more fun by posting CALL TO ACTION Challenges. Should you choose to accept, you are in for loads of FUN!!!!!!!!

WAVE for WAD: Challenge #1- Take a photo of yourself or others waving while holding a sign that states the type of arthritis you have. This challenge is aimed to show that the arthritis diseases affect diffferent ranges of age,--a whole spectrum of ages from babies to the elderly--and there are different types of arthritis as well which can help to differentiate different branches. Feel free to use the specific name of the arthritis type(s) (ie: Psoriatic Arthritis, Osteoarthritis) OR a descriptive name (ie: Autoimmune Arthritis, Degenerative Arthritis, etc).

Submit it to: http://www.worldarthritisday.org/waving-photo-upload and see it posted live soon! Follow them on the WAD facebook page (https://www.facebook.com/worldarthritisday) as well as the WAAD facebook page (https://www.facebook.com/WorldAutoimmuneArthritisDay) and IAAM facebook (pagehttps://www.facebook.com/InternationalAutoimmuneArthritisMovement). Use it to challenge your friends and see if they will also take the Wave for Arthritis Challenge #1!...and when it comes to IAAM, it there is a Challent #1, you better believe there will be a #2, #3, #4, etc. etc., etc.,...

ATTENTION AUTOIMMUNE ARTHRITIS'ERS:
THIS IS YOUR CHANCE TO START CHANGING THE WAY THE WORLD VIEWS "ARTHRITIS"!

IAAM was brought in to the 2012 World Arthritis Day (WAD) campaign to help bring more awareness to Autoimmune Arthritis so LET'S DO IT! While you may always simply upload a photo of you waving, IAAM has put an awareness spin on the Wave for WAD campaign by posting Call to Action Challenges!

Challenge #1: We are starting out easy, but in true IAAM fashion they'll get more challenging and more FUN ;). Take a photo of yourself, your friends, anyone with Autoimmune Arthritis, wave to WAD BUT ADD SOMETHING TO SHOW WHAT TYPE OF ARTHRITIS YOU HAVE. If you have an Autoimmune Arthritis disease, show it! If you have OA, write down Degenerative Arthritis and show that- The purpose is to start DIFFERENTIATING THE TERMINOLOGY FOR CHALLENGE #1.

Once you've done this and downloaded it to www.worldarthritisday.org your country will get another "wave" added to their total, so in addition to awareness you are also helping to make YOUR country the leader in the awareness campaign.

Come on Autoimmune Arthritisers! NOW IS YOUR CHANCE TO START CHANGING THE WAY THE WORLD VIEWS ARTHRITIS!

World Arthritis Day 2012 Homepage

www.worldarthritisday.org

What Do YOU Think of When You Hear The Word " ARTHRITIS"?--Ask Parker

What do YOU think of when you hear the word “ARTHRITIS”?

When I was younger, if I didn’t know the meaning of a word, my mom would say “look it up”…well, I decided to look up “arthritis” for the fun of it…

Merriam-Webster dictionary defines arthritis as: “inflammation of joints due to infectious, metabolic, or constitutional causes; also: a specific arthritic condition (as gouty arthritis or psoriatic arthritis)”

Let’s dive in a little deeper… Most of us hear the word arthritis and think of the form called “osteoarthritis” and yet we use the word “arthritis” as if it is interchangeable with the word “osteoarthritis”.   We all know someone, usually an older person, who has arthritis…in fact, it is so “accepted” as the norm that many elders will say something like “oh, it’s just my arthritis acting up” if you ask why they are moving with caution in some way.  Our culture/society expects this because it’s only natural as one ages.  But why do we accept pain as acceptable…it’s not something anyone should have to experience.

Merriam-Webster dictionary defines Osteoarthrtits (OA) as:  “arthritis typically with onset during middle or old age that is characterized by degenerative and sometimes hypertrophic changes in the bone and cartilage of one or more joints and a progressive wearing down of apposing joint surfaces with consequent distortion of joint position and is marked symptomatically especially by pain, swelling, and stiffness—abbreviation OA; called also degenerative arthritis, degenerative joint disease, hypertrophic arthritis”

OA is NOT what children with juvenile arthritis have!  Juvenile arthritis is a form of rheumatoid arthritis and more specifically is differentiated from OA because it’s an autoimmune arthritis.  Juvenile arthritis is not NATURAL in any of its various forms.  Yet, many families experiencing JA have heard at one point or another, something to the effect of “Oh, I know about that (referring to JA), I get arthritis in my …” or “My grandma has arthritis…” or  “I had tennis elbow and that really hurts…”  All of these comments are very well-intended.  They are a way of showing compassion or an attempt to relate to a disease that many know very little about.  But as a parent or a child/teen dealing with the disease, these comments are incredibly frustrating to hear spoken aloud because we painfully know that osteoarthritis is not synonymous with Juvenile arthritis in any way shape or form; except that they share one commonality in that the diseases both affect joints.  Juvenile arthritis (also known as juvenile idiopathic arthritis and juvenile rheumatoid arthritis) is an autoimmune disease.

Merriam-Webster defines rheumatoid arthritis as:  “a usually chronic disease that is considered an autoimmune disease and is characterized especially by pain, stiffness, inflammation, swelling, and sometimes destruction of joints—abbreviation RA; called also atrophic arthritis”

and autoimmune is:  “of, relating to, or caused by antibodies or T cells that attack molecules, cells, or tissues of the organism producing them”

and atrophy (verb: atrophic) is:  “decrease in size or wasting away of a body part or tissue; also : arrested development or loss of a part or organ incidental to the normal development or life of an animal or plant”

Juvenile arthritis (JA) comes in many forms and severities range from one end of the spectrum to the other.  Just as the various 100 plus forms of JA differ, so does the treatment.  Researchers are still learning about JA; there is still so much that is unknown.  And even if one treatment plan works for one child with the very same form of JA as another, it doesn’t guarantee it will work for every child with that form.  Each child is an individual.  Thus the challenge for pediatric rheumatologists is great.

I know that families who read our blog, especially whose child is newly diagnosed, may worry even more after reading about Parker.  But I want to reassure families to remember that just because something doesn’t work (or does work) for our child, doesn’t mean the same will happen if the treatment is used for their child.  I have heard that some families get really scared after reading about Parker.  We never intended to scare anyone, but we do ALL desperately need a cure for our children no matter where we are at in this JA journey.  Parker does have a severe and progressive form of JA called systemic on-set juvenile arthritis (also known as still’s disease).  Recently, we have learned that even with systemic on-set there are some who have less than 5 joints involved (oligo) and some who have more than 5 joints involved (poly) and that it’s children who are poly in nature that seem to have a more progressive form of the disease and that children with systemic on-set seem to have more immunology issues. For readers who are not familiar with systemic on-set JA, these children not only have joint involvement but also can have issues with rashes, fevers, and inflammation in any organ in the entire body   (source:  http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html).  

Our family has chosen to be vocal about our experiences because we feel it is one way we can raise awareness and advocate for what is needed for ALL CHILDREN with autoimmune diseases.  They ALL deserve equal attention and we really feel that if researchers could figure out one autoimmune disease, it would help with making progress on all autoimmune diseases.



Michael, Logan, Parker, and Jesse (Logan's best bud) watch the sunset



 So tonight the rain clouds drifted away as we watch the sunset on another glorious day.  We send out love to all families dealing with Juvenile Arthritis in any size, shape, or form.  May we all see a CURE become reality for our future children!

IAAM's JA Awareness MOVEMENT....

 

Thank you for being the next Guest Blogger on both of my blogs. You are so wonderful for sharing your Personal JA Story. If you have any questions for mom, dad, big brother, or this little warrior Parker, please go to their blog, Parker's Purple Playa Power..Pounding JA. "A mom, dad, big brother, and warrior sharing our perspectives of Juvenile Arthritis, a painful autoimmune illness affecting joints and internal organs…JA affects over 300,000 children in the US and many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has system onset JA with overlap syndrome, along with severe allergies and asthma. Although there isn't a cure yet; we proudly pound at JA together with HOPE for a cure!" 

Whether you have JA, are a parent of someone with JA, or care for someone with JA, I am looking for Guest Bloggers all month long!!!! 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. ;-)

I also want to let all the JA parents out there (and JA supporters and advocates) that IAAM initially launched our Juvenile Arthritis Awareness Movement Monday, July 9th, dedicated to set a new standard in JA awareness :). We started the campaign by hosting a Video Contest unlike anything seen or done before--but until now awareness has not reached an acceptable level so we are going to change all of that! 

This initial campaign, a 60 secondish video commercial competition for YOU to help blast dozens of short messages to the world so others can understand. The subject? JA and OA: Differentiating Arthritis. These short segments should simply show WHY JA is different than OA.

Because people are not always comfortable with new things, our video idea is a totally new idea, we want to make sure everyone has a chance do a good job, and we want to make sure we have enough time to make it fun for everyone, IAAM CEO Tiffany Westrich is using her time to host her "training sessions." Tiffany is extremely talented at her training sessions, and they should run long enough so that everyone gets enough help to understand how to do the videos and turn brainstorming concept into imagery.  She will also tape the training sessions like a course on brainstorming concept to imagery, which she taught in college. We will launch a new call for videos from the 16th through the 30th of August.

Voting will take place in September. 3 Finalists will be selected,  resulting from IAAM voting and 20% PUBLIC voting so you can blast that sucker everywhere! One Grand Prize winner (selected in October) will receive a complimentary rental house7 night stay, 4 bedroom, 3 bath property in Orlando Florida just a few miles from Disney and Universal Studios. Prize donated by FloridaHolidayHomes4U. Restrictions apply.

We KNOW you can say what the differences are, but if you aren't sure how to put those words into an effective video HAVE NO FEAR! As part of this initiative, remember that Tiffany, IAAM CEO and Founder, happened to also teach advanced design at a college level, which included how to take concepts into imagery. She is the one who designs all of our posters and videos, and she is donating her time to personally teach you how to do it too!

Interested in learning more?! Awesome! Email JAContest@IAAMovement.org for more details!!!

 
IAAM's Juvenile Arthritis Awareness Movement has begun!





Time to put your thinking caps on and decide how YOU would like to see JA differentiated from OA in short, impactful video form...and IAAM will TEACH you how to make your visions a reality! Sign up today to participate at JAContest@IAAMovement.org!
 
WATCH THE VIDEO: http://www.youtube.com/watch?v=DmfsJ4IP9_E&feature=g-upl

In the meantime, I am hosting a Blog Carnival on my 2 Blogs and facebook Public Pages. Please send your blog posts to Dana at danalm_iaam@yahoo.com. The Blog Carnival should help with your brainstorming of ideas for the making of your video for the JA Video Contest. The Topic for the Blog Carnival is also JA and OA: Differentiating Arthritis. WHY  is JA different than OA? All Blog Carnival submissions are due July 27th and will go live on August 4th.

Alexa: My Story

When people ask for my story I’m never really sure where to start. Do I start with when I first noticed the pain, when I was diagnosed or where I am at now? For now I will start with when it all began. I had just turned 14 years old, and I was soon to be a freshman in high school.  

I was so excited, it was the next step in my life, and I could finally do a sport that I was good at, golf. Another new thing to me was marching band. Practices for both started in early August. The more active I was the more I was noticing pain. It all started in my wrists and my knees. My wrists would pop, snap, and crack every time I would pull the club back, it got so bad to the point that I couldn’t even hold the club up very well. My coach sent me to our HS athletic trainer to have her look at them. When I talked to her she said that yes they were swollen, but it was probably just tendonitis. She wrapped them up for me and I was on my way. As for my knee marching band was starting to get the best of me, both knees hurt, only one popped. After awhile my parents gave in and sent me to an orthopedic surgeon in town. Worst decision ever made. 

When we went he diagnosed me with an extra band of tissue in my right knee, after so long though with no results we transferred to DeVos Children’s Hospital. There they took care of my knee and diagnosed me with a torn meniscus which 3 surgeries later would be fixed. Even though there was nothing visibly wrong with my left knee he was convinced the pain was coming from somewhere. He did some lab tests and got my inflammatory count back, mine was 7x’s what the normal persons is. I didn’t let that stop me though, I continued to do marching band, golf and even added dance team. So at age 15 I was sent to some doctor called a Rheumatologist, at the time I had no idea who it was nor why I was going there. My first visit the doctor looked at me and said I’m not too worried about your knee right now I’m worried about your wrists and ankles. Then it all made sense the pain I was putting up with as a freshman, and it just continued. From there I was sent in for several tests and started on some medications, along with scheduling several MRI’s. I had an amazing doctor who was determined to find out what I had and what he could do to help me. At age 16 I decided to do swimming instead of golf, along with continuing marching band, and dance team. Swimming was not such a smart decision, the repetitive motion was killer, so I switched to diving. Diving I found a true passion for I loved it so much. The only issue is due to everything I could never get as high as the other divers or stand as much as they could. I still pressed on though. When it came to marching band everyone gave me so much crap about my invisible disease, I was  a faker in their eyes because you couldn’t physically see the hurt, after that I was done. I couldn’t handle going home crying every night because of the pain mixed with the things that people would say to me. The rest of the year pretty much went the same way the whole time I’m being put on a mix of medications, none of them that ever did anything for me. Going into my senior year at age 17 things took a huge turn for the worse. Everything hurt, my rib cage which made it hard to breathe, my back which made it hard to sit in a chair, my ankles which made it hard to jump for diving, my knees, everything and anything that could hurt did. Then I received my diagnosis. Ankylosing spondylitis. It was hard to hear for so long I feared the unknown, but now I was scared of the known and what the future had in store for me. After that things continued to decline, I was put on meds that made me sick. The pain grew to the point I had to stop the activities that I love. It was all over terrible. It finally hit a plateau going into my freshmen year of college. I stayed home and went to a community college. And then here I am now. 

I’m going to be a sophomore in college, I’m going to Grand Canyon University in Phoenix, AZ. The reason I decided on there was because the constant dry heat. My AS has not been doing too great, recently the doctor told me, that I may not ever reach remission. I’m on sulfasalazine, relafen, remicade, and temporarily on prednisione. It’s been a rough journey, I’m right now a camp counselor at a YMCA camp, and I love it, but I would be lying if I said that it was easy. The fact that I have AS will always make life a little more complicated, sometimes I have to say no to things due to my limits. Going through it at such a young age I think made it harder. High school is hard enough already, but dealing with an invisible disease that people don’t understand makes it even harder. One time I recall my legs got so painful, I just couldn’t even walk on my own anymore and so I used crutches. I became known as the class faker. 

I wish people could understand that arthritis is a tough thing and  adults aren’t the only ones suffering, kids get arthritis too. 




 IAAM's JA Awareness MOVEMENT....


What a great pleasure to have Alexa as the second JA Guest Blogger on both of my blogs. Thank you for sharing your personal story. If you have any questions for Alexa, 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!
 
Share this poster with your friends...see if they know the answer.

 

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!

In The Mirror...About to Break...Worthy...Not This Disease...I Am Dance!

This satisfies the MOWer's blog topic: self-esteem!

When I first began belly dance class, it was at night in the neighboring apartment complex. I had never attempted it before. I had my shoulder replaced in March 2010 and began belly dancing in August of that year. It was difficult for me at the time. I can't lie. I had already finished my physical therapy but still did not have full range of motion in my right shoulder. I didn't have a lot of flexibility everywhere else~back, neck, hips, and legs. I also didn't have a lot of self-esteem. If I was going to go back to dancing, I was going to have to be that same person that held nothing back and just let loose. If I couldn't be that person, then I was going to have a hard time dancing. I also knew if I couldn't allow myself to dance again, that would be like a death sentence.

I only went to the apartment complex belly dance class 4 times. Then I thought it just wasn't for me. I felt self-conscious and as if I just couldn't keep up. I thought for sure everyone was watching me and wondering what was wrong with me. I just knew that I stuck out as someone that couldn't dance because there was "something wrong" with me. I felt every one's eyes looking me over, up and down, and through me. I couldn't go back...I failed!

A couple months later, a bunch of people went out for my birthday. One person that works with my hubby, who happens to be a long-time belly dancer, gave me a gift certificate for class with the same dance instructor that was at the apartment complex but at a dance studio. I thought I should give it another try...

Meanwhile, we adopted our son Michael. We brought him home, and we got settled. Then I returned to belly dancing once more to give it another try. I felt better about it this time for some reason. I was stronger. My right shoulder's range of motion was back to normal, and I was feeling pretty good physically. I began in February of 2011 when Mick was only 2 months old. I started in the Saturday Beginner Class. At first, it was a little hard, but not as hard as it once was when I was going at night to the apartment complex classes. I felt like maybe I could catch on faster now that I was physically feeling better. By the end of that first class, I had a confidence that I had not had in soooooooo long! I really needed that class! I had my friend Ang come visit from out of town, and she joined us for one class to learn the very end to our dance. She caught on extremely quickly, and she did an awesome job especially considering that she had never taken a belly dance class ever. At the end of that class, I took one more Saturday Beginner Class, and then was moved up to the Intermediate-Advanced Class! 

I couldn't believe it! By the time I left for my brother's wedding in April, 2011, I had already completed my first Intermediate-Advanced Class! I had no problems keeping up either, which made it so much more enjoyable and worthwhile. I began taking both the Beginner and Intermediate-Advanced Classes together so that I could take more than one class at the same time. I fell in love with belly dance!!!!

Just last weekend (January 15th), our belly dance studio had a performance. We were asked to get together with other people in our class in November to perform a dance or by our self to perform a solo dance in the show. I was asked by 5 different people to do a dance with them. Talk about a boost in your self-esteem! You know that when others ask you to dance with them, they appreciate your talent or else they would not ask you to dance with them. I was honored and excited to begin practicing. Of course, I was going to be out of town for a lot of the holiday season which meant that I would miss a lot of practice time, so I opted out of the January performance. I told everyone that I would love to dance with them in the spring performance in March or May.

The holiday season has come and gone so quickly. We returned from visiting family in St. Louis, and were ready to get back into our normal routine again. I had made an appointment with my hip orthopaedic surgeon way back in November to see him on January 4th. I had been having some problems with the right hip~clicking, sticking, popping, pain, grinding, and I feared that it was near total collapse.  My fears were actually made true when I was told that the right hip could collapse totally any moment now. I am continuing to belly dance though until I can no longer do it physically. I went to the performance eleven days after my news from my orthopaedic surgeon. I cheered on my fellow classmates. 

Two days later, I went to my belly cardio class, which is fast paced and super-charged fun! I danced my body and my heart out as if nothing was wrong with me physically. I told no one in my class about my hip. I just wanted to be "normal," to feel "normal," and to only have people look at me for how I danced because they liked my dancing! OH, I danced as though my life depended on it! I held my head up high and my shoulders back! I was so proud of myself! No one can make you have self-esteem, it is

The music began...I watched myself dancing in the mirror next to all the other women and young ladies in my class...I couldn't even tell...I don't think anyone could tell...I truly couldn't tell...I moved my hips, then my shoulders, and I could keep up with everyone in the class~old and young alike...No one even knew I was about to break...No one knew I was less than perfect...it looked as if I was afraid of no one or nothing...I gave the impression that I had so much spirit, brevity, courage, spunk...I obviously feel comfortable in my own skin...I know what I'm doing...This is so right!...I am worthy!...I am a dancer!...I am dance!...I am not this disease...it doesn't define me!...I am worth so much more!...

You don't wake up one morning and say, 'I will become a dancer.' 

You wake up one morning and realize you've been a dancer all your life,

And you say to yourself, 'I am a dancer.'

'I am dance.'

I Have The Best Friends Anyone Could Ask For...I Don't NEED Anything More!

This blog post will fulfill the the MOWer's blog carnival topic "NEED."  When I think about the word "need", I automatically think about the word "want" as well. Many people tend to interchange these two words as if they have the same meaning, and in fact, these two words are very different in meaning. The word "want" is defined as:

1. desire something: to feel a need or desire for something

"We want a new car."

2. wish something done: to desire to do something or that something be done

"He wants his steak well done."

3. miss something: to feel the lack of something

"After a week on the road, I want my own bed."

4. wish somebody to be present: to wish to see or speak to somebody

"Someone wants you at the door."

5. seek somebody as crime suspect: to seek somebody in connection with a crime ( usually passive )

"wanted for two felonies"

6. desire somebody sexually: to feel sexual desire for somebody ( informal )

So when you "want" something, you could replace the word "want" with any number of these words/phrases: desire, wish for, would like, feel like, crave, covet, yearn for, hanker after, be after, be looking for, hope for, aspire or fancy.

When you "need" someone or something, the definition changes:

1. transitive and intransitive verb require something: require something in order to have success or achieve a goal

"Do you need any money?"

2. be necessary: used to indicate that a course of action is desirable or necessary ( used in negative statements )

"You don't need to thank me; I'm happy to help whenever I can."

3. transitive and intransitive verb deserve something: to deserve something, especially as punishment ( informal )

"Those troops need to be shown who's boss."

4. intransitive verb to be essential: to be essential or necessary to something ( archaic )

Therefore when you "need" someone or something you can replace the word "need" with:  demand, require, call for, necessitate, take, have to, must, should or ought.

When I think of wants and needs, I think of a desire (want) to fill what's lacking or absent vs. something essential or necessary either to survival or something more basic, such as a requirement (need) to complete a recipe. 

So why am I going to such extremes to show you the difference between wants and NEEDS? Well I think it's important for everyone to know that food, air, water, love and shelter are needs and that candy, ice cream, shoes to match every outfit, and a designer purse are all WANTS.

In my life, just like in every one's life, I have a WANT list. Many people make the list around the holiday season for loved ones to know what to buy for them. I make my WANT list more so to realize that material things are nice to hope and wish for, but they are definitely not the most important things in this world. I put things on my WANT list like outfits for belly dance, velour jogging suits, I-PAD, smart phone, new shoes, hair accessories, new furniture, new TV, etc.

Now to take this in a little different direction...I went to my hip orthopaedic surgeon on Jan. 4th because I was having increased hip and groin pain. My right hip was sticking more when I went from the seated position to the standing position. I was extremely concerned because 8 1/2 years ago, this is what it felt like right before my left hip completely collapsed. It collapsed in August 2003 and was replaced December 22, 2003. I began to prepare myself for what the doctor was going to say, all the while hoping that he would end up telling me that it was still the same as it was in May of 2011.  Well, my fears were correct. It is just about to collapse. The hip is a ball-in-socket joint so the hip is able to move in a full circle inside the socket. For me, the socket is resting on the ball, which is already flattened (not round), and the ball has a crack all the way through it. Imagine what the pressure is like on that ball! With all that pressure and a crack all the way through, it does not take a genius to figure out that it could collapse at any moment!

When I found this out, I didn't freak out at all. I had prepared myself for this, and we knew this was going to happen sooner or later. I was prepared to an extent, but you just can't prepare yourself for that specific day to be told that you NEED to have your hip replaced as soon as possible. I WANTED it to be when my son Michael was old enough to feed, dress, and bathe himself, but perhaps that is asking too much. Ideally, we would be in a city with lots of family and all my friends to be able to jump in to help us out, but again, that just isn't in our cards. It would be super if after this hip replacement, I would not NEED anymore joint replacements. Sadly, I am still playing the waiting game with my left shoulder and both of my knees, not to mention that joint replacements do not last forever. They are also replaceable. My left hip is now 8 YEARS OLD! I was told it would only last about 10 years. OMG! I do not WANT to have a hip replacement done two years apart, even if they are on two different legs.

I WANT the surgery to go smoothly without complications~no problems with infection, placement, blood pressure, etc. I WANT to heal quickly. I WANT to be able to have physical therapy that restores my physical activity and range of motion to normal level. I WANT to heal in three months so that we won't have to hire someone to come into our home after my hubby goes back to work for the fall semester. I WANT this new hip to make both legs equal in size. I WANT to get rid of the pain. I WANT to be able to return to belly dancing relatively quickly after the hip replacement~told you I was a type A personality! I don't WANT to have to start all over again with walking, going up steps, driving, swimming, lifting my leg, bending my knee, sitting, standing, riding a stationary bike, then slowly lifting things, then going back to a normal day of cooking, cleaning, taking care of a baby (diapers, bathing, feeding, playing on the floor, chasing, carrying, etc.).

I NEED help with my son who is now 13 months old. This is what is giving me the most anxiety, however, we have it all planned and everything is in the works. I go in for surgery on May 10th, and my mother-in-law arrives here in town on May 8th. She is off work all the time on Tuesdays, Wednesdays and Thursdays so to come in town she will take her vacation days in chunks. She will start her days off May 11th through the 14th, then the 18th through the 21st, then the 25th through the 28th, and so on...She will be here for the majority of May and most importantly on my surgery day and while I'm in the hospital so my hubby can be with me in the hospital while she's with Michael. I will still NEED help in June, July and August. In June, my parents will figure out their schedules to come here. I have lined up others to come in the other months. In August, we will fly to St. Louis so my hubby can go to Memphis for a bachelor party. This way, I will have lots of family and friends to still help toward the end of my recovery. I have put Mick on a wait list for full time daycare for the summer months. If we struggle at all, we will hire a nanny to help with Mick's care. After May, I should be doing most of my own care myself except driving and bathing. I will still be unable to lift 10 pounds, so no lifting up Mick! That will be the challenge.

Anytime you have an illness or surgery that prevents you from taking care of yourself and others like you normally do, you are forced to rely on others. Although I have been through a hip replacement surgery before and a shoulder replacement as well (as a matter of fact, I have had 9 surgeries in all plus this one now). We have been away from family and old friends for 7 of these surgeries and have done OK by ourselves so far. The thing is that we have never had a child until now. So now we especially NEED the help of others for the sake of our son! Well, we have not had to even ask a single person for help.

I find it interesting, and mentioned this in my blogtalkradio show, that when you have really wonderful, true friends who know that you are in NEED of help, they tend to pass the word on to everyone they know that you are in NEED whether they know you or of you or not. They tell their friends, their friends' friends, their brothers, sisters, moms, dads, uncles, cousins, church members, members of their book club, people that serve them coffee, etc. Then all of a sudden, you are getting dinners from people that you think are coming out from under the rugs.  Well, they actually aren't coming out from under the rugs. These people are coming to help you, because of people that love you very much. They know you are in NEED because of these beautiful, loving people.

I must have the best friends anyone could ask for! I have had so many friends and people I hardly know or have never met until now offer to help us out during the surgery and after the surgery and even now since I am having difficulty with my range of motion and getting around. Thank you, Angela and Rob, Kelbi and Sam, Susan, Samantha, Samantha and Troy, Debbie, Sarah, Rachana, Grace...and family~Mary Lynn, Mom, Dad, Ricky, Beth, Debbie...and my online friends as well who cannot help in person but in spirit and with support~Cookie, Brenna, Wendy...oh gosh there are so many of you, I could go on and on...if your name isn't on here it is written on my heart! You must know that with friends like you all I don't NEED anything more!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I truly love you all! Isn't it wonderful to know you are NEEDED? Guess what? You are also WANTED! I chose you all as my friends, so you all are NEEDED and WANTED, both such great honors!