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Amanda

Sunset girl

Why Not Ankylosing Spondylitis

By | Experience | 4 Comments

If I counted the number of times I said the words “why not” per week it would be astonishing. Ankylosing Spondylitis is not necessarily the original reason I began to use these two magical words, but I have found it has increased its place in my vocabulary. When you are a child these words are a daily occurrence used toward your parents, teachers and whomever challenges your wants and needs.  As an adult, you find you also use these, but in a way that you are almost reasoning with not only the person on the other end of the conversation, but also with yourself. There are many ways these two sparkling words can be spoken. In many different tones and situations. Here are a few examples I like in every day usage.

  1. Why not! Meaning – I don’t understand why you are telling me this. I don’t like your answer.
  2. Why not? Meaning – I already messed up my diet. Sure I’ll have a piece of cake. I’ll hit the gym tomorrow.
  3. Why not? Meaning – Bad luck runs in cycles, so of course this is happening.
  4. Why not? Meaning – I have an open schedule, I would love to travel with you.
  5. Why not? Meaning – Although it sounds risky, I’m willing to give it a try.

Now, let’s look at the list when it comes to AS. The meanings are a little different. These words reiterate the extra thought AS sufferers and many others with chronic illnesses have to put into their daily lives. We find ourselves answering the question before we even ask it. Reminding ourselves how these two small words will have such an impact after they are said. Our simple words will turn our day, and/or days ahead, good or bad almost instantly.

  1. Why not! Meaning – I don’t like what you are saying Stop trying to take everything away from me! I want control of my life!
  2. Why not? Meaning – I’m in horrible pain. I could go ahead and eat that piece of cake since the damage is done for probably the next few days. What’s another day?
  3. Why not? Meaning – I have a million things to do, I’m in extreme pain, and have no more energy left. Let’s add to it. I might as well try since tomorrow I may be bed ridden.
  4. Why not? Meaning – I’m having a good day, and I don’t have any treatments scheduled for a few days. I would love to travel with you.
  5. Why not? Meaning – Although it sounds risky, I am at the end of my rope. I’ll try anything to ease the pain. I want to be able to enjoy daily life to the fullest again.

It really is amazing to me the impact these two, plain every day, words can display. We must remember to never stop questioning. Whether it be good or bad. I often stress the importance of us being our biggest advocates. I don’t mean only to the doctors. I do also mean to ourselves. We know what is best for us. Our answers to the glorious words “why not” is in the end, our decision. We must make the best one for us. Why not?

Group of friends

A Phone Call Away

By | Support | No Comments

I just attended my first Ankylosing Spondylitis support group meeting. For the first time in my health battles, I walked into a room and immediately felt comfortable. I wasn’t sure if it was the strong feeling of hope from the people in the room or if it was because I knew every person attending really knew how I felt. I didn’t have to hide behind my smile. I listened to the experiences of each person and found myself constantly nodding throughout with a…”that happens to me too” thought. I sat in astonishment that these remarkable warriors were so brave and positive about their hopes for the future. I have met so many amazing fellow AS’ers through the web but to actually “see” others and know they are just a short drive away is a new and exciting experience.

When it was my turn to speak I was going a mile-a-minute. Just jabbering on about my diagnosis, meds, doctor, and husband. I could of talked all day. Those that know me well know that I am a “talker”, but this was different. There was a new found enthusiasm in my voice. These people “knew” me. That what I was describing was  also their unfortunate reality. I had so much I wanted to share. I walked away that day feeling ten pounds lighter after letting out my thoughts that have been building for almost three years.

We talked about our support systems and most attendees were just as blessed as me to have an amazing loved one to help them along the way. My heart broke for one person though. Their spouse was far from supportive. As they shared the degrading remarks and actions the spouse made daily to them tears began to fill my eyes. I hope that after our meeting that this person realizes that they are not alone in their fight and there is positive support out there. I selfishly get aggravated when I think of my own family and friends that have pulled away through my health struggles. Now more than ever, I realize that just one person, whether blood or a brand new friend who offers support, means so much. We don’t have the energy to try to “prove” our disease and we should never have to. If they are really, truly part of your support system they won’t need you to explain. Face-to-face, the phone or via the web support is there. Please know you have the courage to pursue it.

Our planet

The Science of AS Miracles

By | Treatments | 2 Comments

Are the few moments of good results with Ankylosing Spondylitis scientific or miracles? I recently watched a show called Miracle Detectives on The Oprah Winfrey Network. It is about 2 people who search out what some call miracles, one a believer and the other looking for a scientific explanation. Me, being a firm believer in miracles had my interest sparked instantly. You quickly realize that there are so many people in our world that have extreme faith. It is refreshing to say the least. On the other hand, you also learn how many people want to prove them wrong. It’s such a shame that some have nothing better to do than dampen a person’s spirit. I know for me, when pain is at its peak, my faith helps to push me through. It is not for me to say what a person should believe but it is just that, what an individual person believes. Who are we to take that away?

Every time I step up to the pharmacy counter to purchase more medicine or go for another medical test I hope for a miracle that today will be the day the pain will go away. I sometimes feel like a hypocrite to be honest. I consider myself a person strong in my faith but at the same time am the first to turn to the science of medicine to find relief from the pain. I think it takes both science and faith to create a miracle. I can’t tell you the amount of times I have heard it is all about mind over matter. The people that say that usually don’t experience the pain from Ankylosing Spondylitis. AS’ers you know the people I’m talking about. The ones that “know” what we should feel, but in reality could never fathom our best day battling AS. I’m definitely all about keeping a positive frame of mind but some days that can only take you so far.

The amount of scientific treatments that are available on the market today for AS are a miracle in themselves. I feel that we have to embrace aspects of science combined with our beliefs. Whether you believe in miracles or not, you should always grab a hold of the hope that things will get better. Maybe not today, maybe not tomorrow, but eventually.

I believe we all have a purpose in this world. Whether it be to teach, learn or experience, we are truly here for a reason. Trust me, I question “why” all the time I was given this disease, but I continue to learn from it and consider the fact that I am here a miracle. I’m constantly reminding myself that God only gives challenges to people who can handle them. If I had a dime for every time a doctor has called me a miracle patient due to my long history of multiple health issues I would be a millionaire. I wish for all of you to be your own miracle. Believing in yourself and doing everything you can to continue giving 110% to your battle with AS, whether it be scientific or faith-based, is your first step in being your own. Each of you helping to spread AS awareness is what helps to make you one of mine. Thank you for being the miracle AS needs.

A child's hand

The Children of AS Warriors

By | Support | 16 Comments

Many of us with Ankylosing Spondylitis either have children, or dream of one day starting a family. I’ve met several women with AS that ask if I had any issues during my pregnancies. They share their many concerns on moving forward with planning their own family. Although, I was not diagnosed until after I had my children it makes me wonder if I would of had my two kids since I’d be possibly risking their future health? It may sound selfish but, I can say that I wouldn’t change a thing after realizing how strong they both are and how much better the world is because they are in it. Without Alexandra and Mark, I would of never realized how much love my heart could hold and give.

When I was diagnosed I asked if my children will have AS in their future agenda. My doctor told me they could very well have the gene but in no way does that mean they will ever have Ankylosing Spondylitis. There is a higher chance of course, but not a definite. This continues to weigh heavily in my mind. The last thing I would ever want to do is make them experience the pain of AS. To know that I may one day have passed on this “gift” to them is heart breaking. I openly admit I’m a bit of a Mama Bear when it comes to my kids and can be a little overprotective. When I was blessed with two healthy, energetic children I vowed I would do all I can to protect them from any pain emotionally and physically.

When I see them smile, here their giggles and see so much of myself in each of them I know battling AS is a fight I will always face head on. The days when I barely have enough energy to get out of bed and my sweet boy climbs up next to me and asks if he could gently snuggle melts my heart and helps to keep pushing me forward. His vibrant, caring personality shows me that although I don’t feel I’m giving 100% to them, I sure am doing something right. I’ve noticed my daughter helping out more without me asking which if you have a pre-teen (lovingly labeled tween), you would realize this is an amazing feat. She is taking charge on the bad days and loving it! Her no-nonsense, curious and strong-willed personality is something that amazes me daily. I’ve known for quite some time how strong we as AS’ers are, but now realize we are not battling alone. Our children and loved ones are silently battling along with us. They may not have the debilitating pain, but they can see us and they are just as strong and should be commended for this fact. I don’t think I give my kids enough credit. I end up feeling upset because I’m at a loss for energy or in too much pain to play with them but in the end they know Mommy loves them. They may not get the full depth of AS but they understand what to do and how to be compassionate on my bad days. My children are the beautiful smile I need on a rainy day.

Doctor visit

The Doctor Trail

By | Experience | 3 Comments

As I was going over my calendar for the month, I realized the number of doctors’ appointments scheduled. All are specialists that either I need to see as a result of, or a preventative due to, my Ankylosing Spondylitis. After catching my breathe from adding up the various dollars in co-pays and lab bills ahead, I began to think about how many doctors it took before my official diagnosis of AS. I painfully wonder if they could of  just found that missing piece one day earlier could things have been different? Maybe not, but unfortunately I will always have that “what if” in the back of my mind.

I decided to make a list. Either my slight obsessive compulsive trait or just the fact that I’m more of a visual person, made me feel compelled to finally put it down on paper. I was taken back, if not amazed, that the list was so long. I had a moment of frustration. Why had nobody on this list ever thought of sending me to a Rheumy? Why were so few educated on Ankylosing Spondylitis? A lot of the healthcare professionals on the list were doctors I had seen, been sent away, and then sent back to again for another consultation. I was passed around like a deck of cards for years to only end up with a losing hand until now.

  1. Primary Care Physician
  2. Neurologist
  3. Urologist
  4. Gastroenterologist
  5. Cardiologist
  6. Dermatologist
  7. Psychologist
  8. Psychiatrist
  9. Nutritionist
  10. Physical Therapist
  11. Osteopath
  12. Oncologist/Hematologist
  13. Rheumatologist

After I finished, I realized that My Rheumy was “lucky 13”. I admit, I did laugh at the coincidence. Sometimes I feel the only way to keep from screaming is just to laugh. I look back at how many of these doctors sent me away with either the “you’re losing it” theory or just an honest, “we don’t know, we can’t help you” result. After reviewing my list some more and wondering why nobody caught it earlier, I began to feel a sense of gratitude for my diagnosis. My Rheumy saved me in more ways than he may ever realize. He gave me the confidence to become my biggest advocate. I had known something was wrong and refused to give up until I got an answer. A person can only mentally handle so many “wrong” answers and I was beginning to question myself until I met with him. It really does take a lot of wrong answers to find the right one.

I’m  even more aware now how important it is to spread awareness for Ankylosing Spondylitis. If more people were educated on the signs and symptoms of AS I may have saved myself and others years of frustration. With all of us getting the word out, we may be able to help others receive a diagnosis earlier. Together we can help set things straight!

Hope letters

Hope Is Not Just A Four Letter Word

By | Support | 3 Comments

We hear the word “hope” and hold on so tightly that sometimes we almost lose our grasp. Having Ankylosing Spondylitis has left us with an unavoidable daily choice. Choosing hope or choosing to let AS control our lives. AS’ers, we start our morning with one of the most difficult. Do we attempt to get out of bed knowing that pain may be in our agenda for the day? We have had a rough night, possibly with tears or some anger, but in the end a night of pain we could not control. The next treatment is days away and we can’t afford to be in the fog of pain medicines today. There is a long list on the schedule and we know today is going to be an adventure. We accept the fact we may not be able to complete our full list, but are wondering if we will even make it past the first few items.

This is where hope steps in. AS’ers we know how strong we can be through experience. We may not have the physical strength, but our mental strength is more than most will ever have the opportunity to appreciate. Our hearts and minds keep us strong. We slowly move toward the end of the bed, plant our feet on the ground and stand proud as if we know today will be the day we hear that they found a cure, or at the least, a day where pain will give us a little break. This IS hope. It may be a day-to-day deal for some. There is no shame in having days where we doubt ourselves. Will we be able to keep fighting while staying positive? I’m sure many AS’ers have had this experience and it is okay to feel this way, you are not alone. The important thing is to get back on track after the discouraging days. Please know that there is support out there. Hope is powerful. Hold on to it as if tomorrow when we wake, the pain will be relieved forever.

Christmas Cookies

My Christmas Cookies

By | General, Support | No Comments

I just finished decorating cookies with my kids. It’s a Christmas tradition in our house. We love to see how much frosting we can possibly fit on a single cookie. The table and floor is cleaned of all evidence that the kitchen was once covered with sprinkles and icing. For some, what would be a simple task of cookie decorating and clean-up comes to me, a person with Ankylosing Spondylitis, as a big adventure. I know if I tackle a full day of cookies that I will be hurting later. Is it worth it? YES! Every time I started to feel uncomfortable today I would look over to my son’s face covered in red icing and my daughter’s artistic sprinkles covering the table and there was no doubt that the choice I made today was the right one. Their laughter and smiles through the crumbs of sugar cookies gives me an extra boost to keep moving forward. I watch as they critique each other and am so envious of their energy. I must admit I love my sweets. Unfortunately, having AS has made me limit my intake of the yummy foods I once enjoyed. Do I sneak a few? Of course, but maybe not today since I will already be paying for the fact that I stirred several batches of cookie dough and my hands are cramped and swollen. These types of choices are the ones that so many people don’t even have to second guess. I have learned a lot about choices since my diagnosis with AS.

This holiday season I have so much to be grateful for in my life. Just because I have AS does not mean I dwell in the bad times. Positive thinking is the only way this AS’er approaches the AS fight. Thank you to my strong support system who has helped me face an incredible adventure head on and has never made me feel less than whole. I want to thank the Spondylitis Association of America for the multiple ways they have helped me to realize I am never alone in my experience. The information and research they provide to help so many understand the disease has been tremendous. I want to thank the multiple other AS support groups, blog websites and facebook pages that have shared their stories and experiences to help spread awareness. Last, but not least, thank you to all of my personal website and facebook followers. Your support means the world to me. Keep helping to spread AS awareness. Together, we can help set things straight!

Merry Christmas and Happy New Year!

– Amanda, United Voices for Ankylosing Spondylitis

Smile

The Many Expressions of Ankylosing Spondylitis

By | Experience, Support | 6 Comments

I have been told for as long as I can remember that I give my thoughts and feelings away with the expressions on my face. I think I’m fooling someone with a forced smile, giggle or silence portrayed. After meeting many others with Ankylosing Spondylitis I have learned I am not alone in my “smiles”. We often hope that if we put on a front of sorts, people will treat us normal or judge us less. I’m here to say this is so untrue. I recently was at the store and was having hip and neck trouble that day. I was moving a little slower than normal. I was hearing the “hurry up” comments and sighs but even with my never ending strength I just had to accept faster movements were not in the plans that day.

AS’ers, I question if our smiles of strength are the right thing to do? An emotional breakdown can happen for me once in a while. I try to wait until I’m alone, without family or friends around so they will not see the extreme pain I have inside and out. I’m worried enough, so why put the extra pressure on them. I know how wonderful it is to have other AS’ers to talk to, but sometimes I just wish the rest of the world understood how real our pain can be some days.

You and I both know our pain is real, but if the average person looks at me I look “normal”. I’m young, still mobile and living your average suburban lifestyle. I go shopping, care for my house, carpool and give the love needed for my children no matter how much I may pay for it later. You would never know that I have something that constantly stops me in my tracks. The extra fog and nausea of pain medicine, muscle relaxers and the fun injection days that really can knock us down just add to the point of having no other choice but to never give up hope. We also have the scary list of side-effects and possible future additional health issues that come up throughout our AS adventure such as, kidney, heart, lung, fusion and cancer issues. You want to scream out as to how much more we can be tested with our strength, optimism and faith.

So what are my expressions really saying? To me, they express a hope for a better tomorrow. Not only for me, but for all that suffer, whether it be from Ankylosing Spondylitis or another disease that can control or “hide” our real pain. Below is my list of what I feel is the “mastered” expressions I use on the bad days. Don’t get me wrong I do have genuine smiles, but I can use the same ones just to shield, not only loved ones, but myself from the pain I cannot control.

  1. A Smile – If you can’t see me cringing in pain, you won’t know the pain is there
  2. Biting the inside of my cheek – I do this instead of yelling out the frustrations
  3. Pressing my bottom lip – If my mouth is forced shut no sounds of desperation are heard
  4. Attempts to sit straight – Hey, I can look like everyone else if I can stand the stabbing pains for a bit
  5. Sarcasm – It can help hide anything, right?
  6. A look of thought – If you think I am pondering something you won’t think I am really wondering how long this specific flare will last or what I can do to relieve it
  7. Laughs – Shielding pain with laughter is the best medicine
  8. Silence – This says it all

I am lucky to have a strong support system through my husband and some of my friends and family. I know that as long as I continue to “smile” and stay optimistic the future will be bright. I may never find complete relief from pain and may have many more obstacles ahead with Ankylosing Spondylitis, but hope should never be put off until tomorrow. We must keep it alive daily.

Typewriter, book and journal

Best Ankylosing Spondylitis Resources

By | Resources | 2 Comments

Recently, I attended The Spondylitis Association of America’s seminar in Atlanta, GA. I was amazed at the amount of information I absorbed that day. I know for me one of the best parts were meeting other people that have Ankylosing Spondylitis. I felt so comfortable and welcomed in a group of my peers. Patients and their support people were welcoming me with open arms and minds. Not once did I feel like I was out of place or looked down on for fidgeting during the guest speakers portions due to aches and pains. I was truly “at home” there. Thank you SAA.

When I began my website I quickly learned how much it was helping me therapeutically and then soon after realized it was effecting others who could relate to how I was feeling. I decided I would share some of my favorite websites and pages that have not only been informative, but ones that inspire me to keep moving forward. They remind me I’m never alone in my AS experience. Through my website and the many other sites, articles and pages out there it proves that together we can spread awareness and make a difference in our journey ahead.

My List of Shout-Outs

  1. http://www.spondylitis.org/ – The Spondylitis Association of America focuses on research, supportive programs and is an advocate for all people with AS. This was the first recommended website for me to check out after my diagnosis and it continues to help me daily.
  2. http://answers.ankylosing.org/ – Ankylosing.org is a website we can go and ask our AS questions. It is a support group that confirms to me I’m never alone in my pain through a community of my peers.
  3. www.Spondyville.com – Spondyville is a sea of smiles. We all have our bad days and the website seems to help spread a little sunshine.
  4. ASAP: Ankylosing Spondylitis Awareness Project Facebook page – ASAP is an inspiring page that is helping to spread awareness. I love their focus and mission for AS.
  5. http://thefeedingedge.com – The feeding Edge is going a very creative route that I love. An Art Apple a day is an inspiring way to help spread awareness about Ankylosing Spondylitis.
  6. http://www.asmom-meloni.blogspot.com – AS Mom is a blog of a woman with AS. Her courage and strength is amazing.

Share With Me

What are some of your favorite websites, pages or articles pertaining to Ankylosing Spondylitis?

Jump for joy

The I CANS Of Ankylosing Spondylitis

By | Featured, Support | 20 Comments

Having AS has presented many opportunities for me to throw up my hands and give in to my disease. I know that if I do this it WILL get the best of me and staying positive is the only way to move forward. I know I must live “with” AS but refuse to ever live “for” it. I may not be able to completely control what will happen. Will I ever live pain-free? Will I completely fuse? Why me? So many questions run through my head as they do for many AS patients. We MUST all realize how strong we are! We may no longer have the physical strength but our mind and hearts must stay strong and never give up.

I put together a list of “I CANS” about a year after my diagnosis and I thought I would share it with everyone. I will admit that the first year of my diagnosis was one of shock and lack of acceptance. I quickly learned that I wanted more than just to be a person with this disease and that is when I chose to battle Ankylosing Spondylitis head on. My hope for you is that some items will help inspire you to stay strong and continue moving forward.

  1. I CAN live life with AS
  2. I CAN be thankful for my husband’s support
  3. I CAN hug and kiss my children daily even if it means not being a hard squeeze every day
  4. I CAN be strong even if my physical body is not
  5. I CAN be beautiful even with thinning hair and bruises
  6. I CAN smile at others
  7. I CAN love God and know he is there for me
  8. I CAN envy the “healthy” without being critical
  9. I CAN do something even if I cannot do everything
  10. I CAN love with all my heart
  11. I CAN help others even when I feel helpless
  12. I CAN and will be my biggest advocate
  13. I CAN accept I have Ankylosing Spondylitis
  14. I CAN be afraid of what will happen
  15. I CAN be okay with not having all the answers
  16. I CAN have less painful days
  17. I CAN cry
  18. I CAN wonder why me
  19. I CAN stay positive
  20. I CAN inspire and be inspired
  21. I CAN be a fighter
  22. I CAN learn as much as possible about AS
  23. I CAN have a successful future
  24. I CAN share my AS story and experience
  25. I CAN help spread AS awareness