Archive for the Week 01: Patient Activist Category

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….

Are You An Advocate For Your Own Health By Dana

Posted in The Blogs By Dana, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.
For our new Masquerade of Words (Spondylitis Blog Carnival)’s (MOWer’s) our first blog topic has been chosen…the first is “The Definition of a Health Activist.”  This is an extrememly interesting topic for me because I am not only a patient with multiple illnesses, many medications, who has had numerous surgeries, but I am also an RN. I have been on both sides of the hospital bed, if you will. I have been the one providing the care and also the one receiving the care. I have been advocating for myself and advocating for all my patients. It is extremely important that you advocate for yourself because you cannot always count on the fact that others will advocate for you. If you have a close friend or family member who will also be a patient advocate for you, then that is even better. And of course, if you are lucky enough to have your physicians and healthcare providers also as your advocates, then you are one of the exceptions!!!!


The most important thing to remember when faced with a health crisis is to be an active part of your healthcare team.  All decisions must be made WITH you not FOR you! You must educate yourself about your illness and all your treatment options. By being an active member of your healthcare team, you are sure to see results and improve.  Begin by researching your illness so that you begin to understand what is wrong with you. One excellent site to begin is (National Institute of Health). That site will also link to other equally helpful sites.  Remember that there is no one treatment that is right or that works for everyone. Every person is different and unique with equally different and unique needs, beliefs, cultures and spiritual values. 
There are several important factors to be considered when being a healthcare or patient advocate for yourself.  Curiosity may have killed the cat, but it can save your life!  Just as you may shop around to buy a house or a car, use that same spirit of inquiry to find your own medical care.  Ask questions and investigate!  Always, always, always seek out a second or even a third opinion.  A good doctor or healthcare provider will welcome your research.  Do your research carefully and choose your doctors ad healthcare providers wisely. There are many people who love and care about you.  You are very important to many, many people. Keep that in mind, when you think you do not want to do all the work involved.
Also, keep in mind that doctors and healthcare providers are human, and humans make mistakes. Do a background search on the hospital as well as the physicians you choose. You can contact your state’s Board of Medicine/Medical Examiners for information on the physician at  You can compare the quality ratings of the hospitals at as well at, which are both independent sites.  I recommend, if possible, to choose a hospital that specializes in the care of whatever your particular condition is.
A federal regulatory body that governs all healthcare institutions which accepts federal funds–The Joint Commission on Accreditation of Healthcare Organization (JCAHO)–along with the Centers for Medicare and Medicaid Services started a national campaign to help
patients advocate for themselves and prevent medical errors: The Speak Up Initiative.
The Speak Up program encourages people to: 1. Speak up if your have questions or concerns. If you still don’t understand, ask again.  It’s your body, and you have a right to know.  2. Pay attention to the care you get.  Always make sure you’re getting the right treatments and medicines by the correct healthcare professionals. Don’t assume anything.  3. Educate yourself about your illness.  Learn about the medical tests you get.  Learn your treatment options and ask about your treatment plan.  4. Ask a trusted family member or friend to be your Advocate (advisor or supporter).  5. Know what medicines you take and why you take them.  Medication errors are the most common healthcare mistakes. (A wonderful resource to learn about your meds is Learn this site and tell others). 6. Use a hospital, clinic, surgery center or other healthcare institution that has met federal guidelines. Ask about their Joint Commission rating on their quality standards.  7. Participate in all decisions about your treatment. You are the center of your healthcare team!
Remember, it is your right to refuse treatment until you understand what is happening.
Watch for the simple things like hand washing.  All healthcare workers must wash their hands before working with you. Stethoscopes should be washed as well. Ask your nurse to identify all medications before you take them. Have your doctor clearly mark the site of your upcoming surgery.  This is really important as mistakes are made every day. When you have a healthcare issue, your illness is too complex or the system is too confusing make sure you have someone who can help you through all the confusion. 
Remember to protect your rights and safety, educate yourself and advocate for yourself with all your medical providers. I wish you the best of health and will assist you in any way I can in your healthcare journey.
Be safe….ask questions!