Archive for the Week 01: Patient Activist Category

The Power Of One Voice By Cookie

Posted in The Blogs By Cookie, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.

What is a patient activist you ask? Fortunately more people have no idea of the meaning of that phrase than those who actually do, and for that we can be thankful.

There are many causes (no pun intended) for people to become activists, the majority of the time it is because something has happened to them personally or to someone dear to them. People try to make sense of tragic things in their lives by making something positive come from it. Some times when people become affected by something they want to bring awareness and a make a difference. Some people it is the need to make people understand that drives them, some it is to educate and for some it is to validate their self or the suffering they go through. Then you have those who choose to gain from people’s suffering for their own recognition.

Which kind of activist are you?

You have many activists who have suffered tragedies over the years and set out on a mission to make a difference by bringing awareness. One person who comes to mind that is very recognizable to society would be John Walsh: America’s Most Wanted. He never sought out being a victim’s advocate or activist, but it is a role that has become his very soul and his life since July 27, 1981, the day his only child, Adam, was abducted from a mall near his home in Hollywood. Florida. Adam was found murdered two weeks later. The case remained unsolved for 27 years. But in December 2008, after a long investigation that was re-opened by the Hollywood Police Department and with the assistance from dedicated active and retired criminal justice professionals, Adam’s case was finally closed. Ottis Toole who’d always been the main suspect was undeniably named the killer of Adam Walsh. This one man, lost in the midst of his own personal tragedy accomplished so many triumphs over the years in saving lives, there for saving himself. The power of one voice. What kind of activist are you?

You have activists who have friends or family members that suffer from a serious illness causing them to have a strong need to bring awareness and make a difference. Often times when people loose a loved one due to an illness it creates the need to fill a void left by that person, to validate the suffering they went through and make a difference by doing things that bring awareness. Nancy Brinker founded Susan G. Komen for the Cure in honor of her sister Susan G. Komen, who died of breast cancer in 1980. Lovely and vibrant, Suzy wasn’t just her sister — she was her best friend and role model. She was only 36, with two young children and everything to live for when she received the worst news of her life. For three years she fought courageously, but ultimately lost her battle. Since then, Nancy Brinker has made it her life’s work to fulfill the promise she made to Suzy to find a cure for this disease. This one activist has turned her sister’s tragic death into a global Race For The Cure: The Power Of Pink. The power of one voice. What kind of activist are you?

You have activists who are making a tremendous effort to making a difference because they themselves suffer from a serious illness. Kelly Christal Johnston suffers from Ankylosing Spondylitis. At one time she was a schoolteacher on a mission to educate and make futures brighter. During one of our many conversations she confided in me that she missed being a teacher more than anything. She said she was born to be a teacher, and an educator. I told her that I couldn’t agree more. I told her that she is and will always be a teacher no matter what Ankylosing Spondylitis or life in general brings her way. I told Kelly you are still a teacher, only the subject and classroom have been changed. I said maybe you are the one that is supposed to educate the world about Ankylosing Spondylitis. She laughed softly at me and said, “Cookie, you are so silly.” Which is a phrase she often uses with me.

I was right though; this one young courageous human being with a sincere and genuine heart full of passion has created Hurting But Hopeful, and Masquerade Of Words. She is also the cofounder of A.S.A.P and Hope and Apples.  She has made it her life’s goal to be the best activist that Ankylosing Spondylitis has ever seen, and she will be. I have been a part of the A. S. World for two years. I have seen a dramatic change in the past year, which I contribute to her, and her ability to motivate and inspire others.  It is easy to see the sincerity in her and the hope she feels and the desperation to make a difference to bringing awareness to this silent disease in order to make a difference in her children’s future and yours also.  The power of one voice. What kind of activist are you?

Then you have activists such as myself, who have a need to fill the void that is deep within their soul because of this illness.  I want to bring awareness and help people to understand what Ankylosing Spondylitis means to all of us, yourself included.

My goal is to bring awareness to the community, accountability to the medical field, and hope to the Ankylosing Spondylitis sufferers, and validation to my own suffering. The power of one voice. What kind of activist are you?

Then you have the activists who would gain from your pain. The ones I call the wolf in sheep’s clothing. The ones who are committed to using your cause to bring awareness to them selves for personal gain, be it their egos that need feeding, or their talents being discovered, or their careers being furthered, or their pockets being lined. This type of activist is easy to see through, just because they suffer from an invisible illness doesn’t mean the reasons behind their actions are invisible to others. They miss opportunities to bring awareness to “their cause “ because they are using that opportunity to promote awareness to themselves. This type of activist reminds me of the quote: Talk is cheap; it is your actions that speak. A sincere activist never misses a chance to bring awareness to their cause. A sincere activist will take advantage of every opportunity they are given and not waste a single one, because each and every one of them are precious to a person who is suffering. The power of one voice. What kind of activist are you?

An activist is a person who has the ability to be empathetic, compassionate and understanding of other people’s needs above themselves. It is a person who is committed with a pure heart that their only goal is to bring awareness and change to a cause that has touched them. It is a person who reaches out to a person by letter, email, blogs, Facebook, twitter, phone, television, webcaming, or to each other to bring awareness and understanding. It is a person who is passionate and sincere in their mission. The power of one voice. What kind of activist are you?

I tell people all the time it only takes one person to make a difference in this world.Everything you have in this world is the result of one man’s thought.
Today, when you see something that needs change, comment about it to one person, eventually the right person will hear and the difference will be made.

Dedicated to all of us, who are committed for whatever reason to making a difference.

The power of one voice. What kind of activist are you?


Me? A Patient Activist? You Better Believe It! By Kate

Posted in The Blogs By Kate, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.

So an Internet friend of mine named Shelly decided after two women committed suicide that she wanted to try to help more people with depression and chronic illness. She wanted to somehow come up with a way to help them, a group of some sort on a famous social networking site we all know about Facebook. I saw the post and jumped in right away knowing there are several depression and bipolar groups out there in existence already for those suffering but there was yet a real good solid group out there for those of us suffering with chronic pain and depression. We needed help too. We needed an outlet socially. Somewhere we could reach our peers where we would also be understood because let’s face it, not just anyone can understand what it’s like to suffer chronic pain and depression together. I pushed hard in the discussion, and pushed harder. I immediately sent a message to one of the ladies who is a dear Internet friend, named Chris, looking to create the group, and insisted we could do this. We could set this thing up!

I wanted more than anything to help other people because helping other people makes me feel so good. It lifts my spirits and lifts my depression and makes me feel useful and gives me purpose. So derived from the original RA Chicks with the basic the group on Facebook was born Depression Support for those with chronic Pain or Illnesses. We have all different people who are members with different diagnoses across the board and it is growing every day. I feel so good knowing I am helping others. All this because of one social networking site and RA Chicks was I able to reach other patients who suffer from debilitating diseases the same or similar to mine. I want to continue to reach out to people and educate others on what it’s like to live with depression and chronic pain because it is no joke. This is serious. People are dying. People are not able to live with this pain. There are days I cannot live with the pain and I have a hard time getting up off the bed times I don’t want to breathe or feel like I can’t suck in another breath. We must reach out to people before it is too late and allow people to reach out to us. We as patients have each other. We need one another. It is a battle we face and will face forever until there is a cure for each of us.

The Kaleidoscope Of Life By Jeannette

Posted in The Blogs By Jeannette, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.

Jeannette's Story (Ankylosing Spondylitis)

The Kaleidoscope of Life

As many others with ankylosing spondylitis, I’ve become passionate about helping raise awareness. It’s my hope (our hope) that future generations will receive early diagnosis and treatment before permanent damage is done to the body, less pain, and better yet … a cure.

Four years ago my stress levels greatly increased. It was like an avalanche hit me and my family. In the span of a year I was diagnosed with ankylosing spondylitis, psoriatic arthritis, mixed connective tissue disease, neuropathy, ”awake” seizures, osteoporosis (lost 1 1/2” of height), carpal and cubital tunnel, fibromyalgia and vasculitis. Inflammation affected my entire body, including my vascular system. My blood vessels were bursting which greatly frightened me. My immune system attacked everything including my heart, lungs and kidneys. I lost hearing in one of my ears for about a year, but am very happy to say that I’ve regained most of my hearing.

My story begins at a very early age. I was diagnosed with chronic inflammation of the lungs and allergic asthma when I was only 2 years old. I grew up sick, hospitalized a couple times a year, so I knew nothing different. The joint pain started when I was around 16, but I remained silent about it as I had learned to hide my illness as much as possible for the sake of being able to participate in the activities I loved. Over the years the pain steadily increased. I made excuses and put it out of my mind as much as possible. I worked and went to college full time, got my degree in graphic design, and continued to push myself for the future I had planned for my life. I’ve now come to realize that for the most part I lived in the future. Most tasks revolved around a long term goal. That wasn’t much fun and I was riddled with anxiety about whether or not I was on ”schedule” with that plan. People aren’t trains. We each have a different path to take on this journey. Finding that ever-so-difficult balance between past, present and future is a great feat and a task that never ends.

Life forced me to confront many issues, head-on and quickly. What does one do when they’ve spent their life working hard, focused on the future, and then that near future becomes questionable? Live in the present, and draw strength from the past, with a beautiful glimmer of the future. Once I stopped trying to figure out who I was, or was meant to be, I became who I am. By truly releasing the past and the future, a total surrender, I was able to free myself to live in the moment and love fully.

Why can’t life remain like a calm stream instead of a rapidly flowing river? Consider the way a river beautifully sculpts the earth. Smooth is easy but also monotonous and uniform. Curves and grooves are provocative and thrilling, but can also be dangerous. Challenge brings about strength through humility and truth, and by recognizing faults and refining good qualities. Obstacles and pressures break down false pride and reveal who we truly are.

My favorite color is a unique cobalt blue – a beautiful, distinctive, deep, metallic blue that comes from Raku fired pottery. Raku pottery is fired twice and reaches temperatures around 1800°F. It’s able to endure this type of heat because it’s made from a special type of clay found in Japan that’s capable of withstanding ”thermal shock.” I mention Raku firing because I can’t help but compare that special clay to people put through the fire of life. It’s such an incredibly difficult process, but the result can be something truly extraordinary and beautiful.

At times I have a passionate dislike for character building events in life, but I know in the end they turn out to be worthwhile. How tormenting and paradoxical life can be while one matures. I sometimes find myself possessing a negative outlook on life just to prepare myself for the worst outcome possible … but never without a mustard seed of faith that a mountain might actually move beneath my feet. Pessimism is a way to spare one’s self, but not entirely. Faith is the key to survival. It’s the acceptance of what is, but also the knowledge, hope, and appreciation of something better, no matter how small the improvement. Life’s calamity builds strength for future trials, and with each new tragedy comes a renewed peace and spirit equipped for the next turn of the kaleidoscope of life.


What Does It Mean To Be A Patient Activist? By Robert

Posted in The Blogs By Robert, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.

To me this is a topic very close to my heart. The hardest part of being diagnosed with a chronic condition affecting the rest of your life is the initial feeling of bewilderment and of feeling helpless and alone.

When I was diagnosed with Ankylosing Spondylitis, I like probably everyone else that was diagnosed before me and since, had never heard of this condition. I hope soon that with all the great efforts of a great many people, that will not always be the case. I hope that awareness can be raised to an extent that doctors themselves are much more familiar with the disease and diagnoses time can be significantly decreased from the current approx 10 years from the onset of early symptoms.

If it wasn’t for the advent of Social Networks from the likes of Facebook & Twitter and personal blogging, it could be a very lonely and isolated place not being able to enjoy life to the full and sometimes feeling on the periphery of life.

Friends and Family, although sympathetic don’t really know what you are going through as they can’t always see physical evidence of the effects of the Civil war being fought inside your body. It would be nice if we could wear a little traffic light on our heads that picked up the pain signals sent from the frontline of battle and switched from green to red depending on the pain scale on that particular day to alert those around us of what kind of shape we are in that day and please treat us accordingly.

Through searching out fellow sufferers via social networks a vast weight of burden is lifted (especially in my case) as we all become in our own way, however big or small a patient activist to someone. From being worried about a new medication and associated side effects, a new or extremely painful pain flare or just having a general bad day. All it takes is a quick tweet or post on Facebook and the support comes back at lightning speed from fellow sufferers with an encouraging word here, or advice from previous experience that can lift the spirits and help us get through the latest problem.

Through the use of Social Media in linking us to so many like-minded individuals all over the world, the world in turn feels a much smaller and comfortable place. Feelings of loneliness and isolation previously felt can be diminished from a feeling of, as Mulder would say “We Are Not Alone”.

Many of us don’t actually know anybody near where we live that are going through the same daily problems as we are. We may have to drive many hours to talk with another fellow spondy in person, over a drink and a natter. Something that is very difficult to do. Through a few clicks of the mouse however, we can meet up online any time of day or night with new friends. Here we can share our problems and worries and we no longer feel quite as isolated or alone. This can be medicine in itself, lifting us from the depression caused by feelings of frustration and pain and not being able to vent these emotions on friends and family all the time for fear of damaging our relationships.

My favourite Activist and Awareness Schemes so far have been the fantastic Hope and Apples Campaign and World AS Day that took place during April 2011. These events were a great way to concentrate people’s efforts and reached out to so many people across every part of the Globe. Through this I met many fantastic friends online that I now consider part of my extended Spondy Family. Through the Hope and Apples campaign, People were encouraged to share their stories with each other and spread the word about our invisible diseases. To show to “non Sufferers”, be they friends or family and help raise awareness and help them understand what Ankylosing Spondylitis is and how it affects every person differently. We are not all affected the same and one day could be functioning and feeling relatively normal and the next a completely different story. I like to think of it as a bit of a Jekyll and Hyde condition. Always keeping us on ours toes as to what kind of day we will enjoy.

In summary all it can take to be a  Patient Activist is helping just one other person through a kind word or a bit of encouragement online. That person will then be invigorated to help another, thus adding another person to the Spondy Family. In time the family will continue to grow and go from strength, one person at a time to become a movement that can really make a difference in spreading hope and awareness far and wide to the larger community as a whole. Hopefully one day when people experience prolonged early onset back pain, Ankylosing Spondylitis will be more in the forefront of Gp’s minds. It is my hope that years can be cut of the diagnosis time and medical routines can be implemented early in the disease before large amounts of damage are already done.

After reading this please reach out and help just one fellow sufferer today, to help many more in the future.

Being An Advocate For Ankylosing Spondylitis By Jackie

Posted in The Blogs By Jackie, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.
Masquerade of Words (Spondylitis Blog Carnival) is a new group which I have joined, and as it says, it is for blogs related to AS. Subjects for discussion were Guilt and Being an Advocate for AS. I have dealt with the Guilt blog, so now onto Being an advocate for AS.On consideration I do consider myself to be one, I have always told people what was wrong by name, rather than just saying a type of arthritis, though often did have to end up using that description as few people had heard of AS. During the years, when I had major surgery on my spine, I told people what had been done and why. When I kept breaking my back, I would explain why. When I had what felt like almost continuous iritis, I would explain the what and the why.In the early years I looked quite “normal” so there was always the feeling that people didn’t take AS that seriously, after all I lookedfine. In fact I used to get so bloody sick of people saying “but you look so well” as though I was making it up, however if they came upon me during a flare…… Even doctors would come out with the looking good condescending type remarks, which led me to believe that unless you were obviously unwell or screaming in pain, no one really took you too seriously.Well despite my efforts, and partly because too much damage had been done in the years it took to diagnose my AS, no one can now be in any doubt that I am not fine. I am very stooped, very little movement in my neck and so on, so now when people ask what is wrong, they have a much better idea of what is involved, and they no longer say how well I look – actually they do as I am not pale and feeble looking – but I explain that is to do with a good attitude, good makeup- and red hair dye!!!I have always been up front with people regarding what is wrong, and, unfortunately, I am now a walking and talking example of the wreckage of a body it can leave you with. I actively take part in various groups and blogs to widen the knowledge and understanding, of those with AS or other chronic conditions. I hope in my way I help family and friends understand what we go through, and that the information and experiences imparted by myself and others like me, might help newly diagnosed people deal with their situation, and encourage them to strive for all the help and medication etc that is out there. This may, in some small way help them to have a better outlook than people of my generation.

I do worry sometime that people consider that I am simply feeling sorry for myself, or like to talk about myself all the time, I  have had this awful disease for 2/3rds of my life, it rules my life, but maybe if the treatments and drugs that are around now had been available then my life could have been much different, so I am passionate about making sure that all newly diagnosed people have as much knowledge as possible made available to them so they have the best chances possible.

Being An Advocate For AS By Meloni

Posted in The Blogs By Meloni, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.

I’ve been asked to join a group of bloggers who all have our “mystery” disease called ankylosing spondylitis (AS). Why the mystery?? Well, YOU can’t see it–but can you??? If you look close enough, I think you can. So, I’m writing on being a patient advocate today. I started my blog because of AS. I do want people to know how it not only affects me, but my entire family.

I had NEVER heard of such a disease, but yet there are over 2.4 million with spondylitis. How have we never heard of it? Why have I always thought when I see that stooped over older person they didn’t do what their mom told them and stand up straight. Mmmm, maybe they have spondylitis?!

What does it mean for me to be an advocate for AS? I feel it’s important for me talk about AS (blog about it). To tell those how it’s my entire families disease. To educate myself and others. To inform folks that if you truly look–I mean look–it’s not invisible.

–yes, it’s a “form” of arthritis. But, it’s not something I got because I’m getting older. I can’t take a Tylenol and the pain goes away. It can effect my organs. I know I “look” good. Thank you 🙂 but my body is SCREAMING 24/7! My future–not sure, but I do wonder! I wonder if I’ll be in a wheelchair. I wonder if I’ll be blind in this right eye that’s always hurting. I wonder if my back will be fused together and stooped over and that I won’t be able to turn my head. I wonder if folks will stare at me and wonder what’s wrong. But, if we all lived wondering it’d not be worth “living”! I’m thankful that I have a Savior that I can call out to and I’m thankful to know that when I get to heaven, I’ll have a healed body! One free of sickness and disease.

For now–I wish that everyone knew about AS so that I wouldn’t be asked everyday how I feel. My response will always be the same–I’m okay! If everyone knew about AS, they wouldn’t ask the question because it’s not ok. It sux. There isn’t a day that I wake pain-free. There isn’t a day that I don’t have to take a “time out” to rest some part of my body that is killing me. There isn’t a day that goes by that I pray I don’t pass this to my children. There isn’t a day that I wish that AS didn’t come into my marriage. There isn’t a day that goes by that I wish AS didn’t come into my body and there isn’t a day that goes by that I wish AS didn’t come into my life.

So, open your eyes, it’s not a silent mystery disease. You can see it. You just have to care enough to see it.

Tell Me The Truth By Kelly

Posted in The Blogs By Kelly, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.

My entire life I have been real; blunt, honest, to the point.  I never sugar coated anything because I always wanted the truth from my friends, so I made sure to give them the same treatment I wished for.  Maybe it was a little naïve on my part, but I have just always assumed that if you were my friend then you accepted and loved me the way I was.  In other words my friends were used to me telling them they had pepper in their teeth, and in general I was always thanked for letting them know.  If you got your feelings hurt because I pointed out something I thought you should know it automatically put you in the foe category.

Yet, as I have aged this dynamic has shifted a bit.  Three months ago had you and I met, and begun talking, I would have just known fate had thrown you in my life for some reason, and that you would be here until that purpose was fulfilled, or until we grew apart, since life tends to do that to friends.  Several times over this past six months I have grown into my own a bit, learning for myself what it is that I want to accomplish on this earth, learning to be the mom and wife I want to be.  Mainly it has been this amazing ride where I found out that all those years of me being bluntly honest were not spent in vain.  All those “friends” I lost because I was too straight forward was not for nothing.  All those years of me putting my foot in my mouth turned out to be great practice for being a Patient Activist.

The friends I have collected and treasured over the years have played a large role in my life as a PA.  The real friends stick by you and encourage you through honesty and integrity.  They stand tall for you and they never ever give up on you.  Real friends, TRUE friends never get mad at you for being boldly blunt.  It turns out that when your goals involve wanting to teach the world about the disease that afflicts you and your friends, modesty flies out the window, and honesty becomes a key player.   If I was shy, how could I tell you all those symptoms that make even me blush, or how could I ask those questions that embarrassed me to even think about asking, and most importantly how could I be honest, how could I be ME, an AS Activist, if I could not be real?  So yeah, the answer is, I couldn’t be me without the amazing ability I have to be able to share with the world every aspect of my personal life……..AS is just a disease that makes me who I am, a Person. Blunt, loud, awkward, silly, dark, passionate, caring, REAL. I wont apologize for being me. Nope….