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Roller Coaster

The Year of The Roller Coaster

By | Experience, Support | 2 Comments

As 2011 draws to a close, I can’t help but look back at the past year of my life which was full of so many ups and downs. Ankylosing Spondylitis can be a challenge. Throw in health scares, full schedules, and a pinch of drama and you might as well put on your seat belt and get ready for the bumpy ride. I know it may seem silly to say, but I don’t think I would change any of it. I would of loved to have things modified a bit to protect my loves ones, but each adventure made me a better person. I wish my loved ones never had to experience their hardships, but also know they too were strong enough to handle them. I would say the way I now view my surroundings and the people in it are as  if I am seeing it, experiencing it, for the first time. I now look at things with a different perspective. Those who know me well know I was never a person who loved surprises, good or bad. I liked to be the person in control, and any loss of it could send me into a tailspin of frustration. I always believed in a higher power, but I wasn’t a person who really, truly embraced my faith…that is until this past year.

My AS has tested my physical and emotional strength time and time again. It is as if it sits there poking at me asking how much more it can do until I break. Many of us with chronic illnesses can relate to that annoying pain that tries to conquer us. It is up to us to silence it. I am currently on my 4th medicine, Cimzia, to try and control some of the pain and progression of AS. Sadly the pain is still not controlled. I will admit I have days where I wonder if I can really keep going on. The times when even opening my eyes or lifting my head from the pillow is a chore due to pain. Days when my hands, legs and feet are an embarrassment because I can barely use them. Sitting up straight is definitely out of the question most of the time and if I need a lot of energy, well, it just isn’t going to happen. After all of these “downs” I look “up” and realize there is a reason I was chosen to have these hurdles. God must truly believe in me, so who am I to disregard his faith in me? I instantly remind myself that I can push forward. It may take longer than a healthy person, but I will get there and in a positive way.

From the outside looking in my past year would really seem to test a person’s mental well-being. People seem amazed at how I approach the situations so positive. They see it as remarkable. I see it as the only way. The pattern of the year for me seemed to be good news, bad news, and repeat. I began secretly dreading good news because it meant shortly following bad news would arrive. Between my AS adventures with pain and medicine working and not working, my mother’s deterioration of health, my daughter’s cancer, misdiagnosis of cancer, and then a final diagnosis of indeed a malignant cancer for her, even the strongest person would break. I cried only a few times through all of this. I will admit there were days I wanted to, but feared if I did, I wouldn’t stop so I pushed forward. I have learned I cannot control what God has planned for us and must accept, or at least respect, the outcome he chooses. I believe life and faith go hand in hand. It is okay not always knowing the answers. Please know you are never alone in your battle, no matter what you’re facing.

To all of the people that either helped me through this ride with their amazing support or to anyone who has had a roller coaster year themselves, you don’t realize how positive, strong, and hopeful you can be until the only choice you have is to approach life in this way. I cherish the support of family. I have found extreme comfort in old and new friends. I have had amazing past friendships renewed and am absolutely grateful to have these people back in my life. I look forward to not only the year ahead, but to making many, many more happy memories with the people I love.

Woman thinking

What Stage Are You On?

By | Support | 6 Comments

When a person is diagnosed with a disease they go through stages emotionally and physically. Ankylosing Spondylitis warriors are no exception. I cannot tell you the number of times I have questioned my sanity. I have hit the point of exhaustion from pure frustration more times than I can count. On the flip side, I have felt strength, achievement and relief I never thought possible. I must start by saying that these feelings can turn dark quicker than we realize. It is up to us to accept them, deal with them, and move on. We must keep in the back of our minds that these disruptive feelings are only temporary. It seems for me, when the pain slows I find myself looking back at those weeks of struggle and wonder why I let it get the best of me not only physically but mentally. I will admit that it never fails when a flare occurs I feel myself spiraling out of control again. For me, I feel it is due to the loss of control over my body and mind. I know deep down that I can do it, but when the pain is at its peak, I haven’t slept in 6 nights, and I have a full schedule, I feel desperate. Desperate to just feel better again…normal. Below is my list of 3 stages of AS. I have found that they are an ongoing cycle of experience. Each time around the experience may be different, but somehow it always seems to fall into one of the stages again. Can you relate?

Stage 1 – Why do I feel like this? Can anyone help me?

For years I went from doctor to doctor only to be told nothing was wrong with me. They would say it was all in my head. I knew my body and I knew something wasn’t right so I kept looking for my answer. This is extremely important for all of us. We MUST be our biggest advocates. It took countless no’s to get a yes. I never gave up questioning each doctor along the path and in the end, it paid off. I was diagnosed with Ankylosing Spondylitis. It explained years of pain, physically and emotionally. I was re-assured that my feelings were real. Each time I go to my doctor, I know that if something is bothering me it’s important to talk with him and explain what I am feeling. Even if I think it doesn’t make sense, every bit of information is helpful when it comes to AS. When you have an illness it is important to never stop questioning.

Stage 2 – This is not fair! Will the pain ever stop? I want to give up!

So, I was diagnosed, but now what? It takes how long for a treatment plan to start working? It may never work!? This isn’t fair! I can barely sit or stand for longer than 5 minutes. I want to play with my kids as any normal parent would, but I’m too exhausted to pick myself up! I just want to be normal. I hate that I can’t plan ahead because I don’t know what tomorrow brings. My family and friends shouldn’t have to suffer along with me. They didn’t sign-up for this. Neither did I! Isn’t there an easy fix? I just want some relief from the pain. I cannot stomach another pain pill. I want to be out of this fog. It’s as if the pain will never end.

Stage 3 – I CAN do this! I am stronger than I realize. I am not alone in my battle. I am a warrior!

My treatment is working! I forgot I had this type of energy!! I feel like my old self again. I can’t believe I was at such a low point before. I need to realize I can get over any obstacle in my path. I CAN still love and deserve to be loved in return. I CAN spread AS awareness in hope to help others who are battling along side me. There is an amazing AS community who is always there for me whenever I need them. I am not alone. I have the support I need to move forward on the good days and the bad. My hope, determination and positive attitude can carry me over any hurdle. Each day may present a new struggle, but I can give 100% to approaching it with a positive attitude. I believe this is the most important stage. It is extremely important that no matter how far we stray from this stage we find our way back.

If you are a fellow AS’er you are probably finding yourself all too familiar with one or all of these stages. It is okay and normal to have our down days, or even weeks. Unfortunately, it will be something many of us will always have to fight against. The important part is that we find our way out of the dark place and know that we are not alone in these feeling or AS fight. The pain of AS can even knock the strongest person for a loop. Feeling helpless for a period doesn’t necessarily mean we have given up. It just means we have to regroup and remember why we are fighting. It may be for our family, friends and even ourselves. After all, we are the ones with AS. If we can’t get better for ourselves first, how are we to ever be better for the people around us? We are worth the fight!

Dandelions

Dreams Can Come True

By | Support | One Comment

When most young girls are playing Barbies, house and dreaming of their wedding day there was me. Don’t get me wrong, I did play these things, but I always had a twist. I was a CEO, a writer, a renowned surgeon and a famous movie star. I could never settle for just one thing. I wanted it ALL! It wasn’t a monetary reason, it was power. I knew from an early age I wanted to conquer the world and make an impact. I have always had big dreams, but unfortunately have had some physical and emotional hurdles to overcome. As a person with health issues through the years it felt that control and power was constantly being stolen from me. I had to escape to my imaginary world to find relief and the sense of power that I lacked. I was a queen on her thrown in my made up world. I wasn’t sure if I would ever find the “right” guy due to my picky, demanding nature.

Let’s fast forward a few years and introduce Mark. We grew up in the same city, but didn’t date until college. I was in my freshman year of college and received a date invite over winter break that little did I realize, would forever change my life for the better. Mark was nothing like the guys I dated in the past. He opened doors, genuinely cared what I wanted and valued my opinions. Somewhat of a romantic, I instantly fell for him! I often questioned his motives to be honest. Why would this great guy stay with a gal that is constantly wanting more? Why would he sit by my side through frustrating doctor after doctor appointment? He wasn’t brought up like I was with part of his life spent in a hospital. For me, it was just another day, for him, well I couldn’t imagine what he was thinking. Why would he take on such a project? I realized it was his heart. I never knew someone could have so much love in their heart for me. Until him, I honestly didn’t know I deserved it. He stood strong and silent and dealt with my emotional and physical ups and downs. He was the open arms I needed. He supported and encouraged every crazy idea I dreamed up.

In 2008 we were hit with the news. In a matter of one moment we were scared, relieved and blessed. I was diagnosed with Ankylosing Spondylitis. To hear you have a disease that has no cure and will only get worse was a lot to take in, not just for me, but for Mark. I sat and wondered how much more this great guy would stay and face with me. Although I knew I didn’t sign-up for AS, neither did he. Did he really need to be in his 30’s taking care of someone who will never be able to know what the next hurdle will bring? I had an extreme amount of guilt inside for making him experience this. It wasn’t fair. If he would have chosen another woman, it could of all been different. Easier. I realized as a woman how lucky I am. I was blessed with a partner that loved me unconditionally. He didn’t expect a medal for his support, he loved me for me, flaws and all. He would do anything to ease some of my pain even if it was a simple smile sent my way.

Now as a woman in my 30’s I realize how many of my dreams have come true. I still want it ALL, but now I cherish daily what I do have in my life. I have been blessed with so much. Although  I have AS, I do see it as a blessing. Mainly, because of all the amazing people I have met and the realization of what family and friends have stuck by my side and showed their support. I’ve learned a lot about me. I have allowed my heart and mind to open to possibilities. I owe a lot of this to Mark. He taught me about unconditional love. How to be there for each other and never expecting something in return. Unconditional love means you do it out of choice, not because it is expected or what you will get in return. My dreams have changed a bit. I may not be a surgeon or a movie star, but I do feel like I am where I am meant to be at this point in my life. Who knows, I still may become the next Audrey Hepburn one day. There is such a big future ahead and I can’t wait to see where this road will take me. I can confidently say that Mark will be with me every step of the way and I am excited about growing old together. I do believe that certain people are supposed to come into your life for a reason. Mark came into mine to help me make all of my dreams come true. Thank you Babe for being amazing you! You are my rock, my best friend, my real life Prince Charming. Love You!

Apple drawing

Where We Live

By | Support | 12 Comments

People affected with Ankylosing Spondylitis live all over the world. It may be a subdivision, or an apartment, and possibly even in the home a block away from you. As a person battling AS, I have found that I do not limit the place I call home to only the one that provides a roof over my head, but to the community in which I find the love and support I need to help in my daily fight with AS. The Ankylosing Spondylitis Community. The courageous people in this community consist of AS Warriors, their family and friends. People who do not judge, but want to sincerely be there for each other. They are an open ear, a caring heart, and people who truly want to know more about each others experiences with AS. With AS Awareness Month coming up in April, I know it’s our month to shine. We must do all we can to continue spreading awareness.

I have met amazing AS’ers who are also doing their part in helping to spread awareness. Each of us with a creative way to reach out to others. I consider them some of my closest friends. Although I have not met the majority of them in person, I feel like we have known each other for years. I know I could email or call any one of them on a “bad” day for a sympathetic ear, suggestions, or to compare stories, and know that judgment will not be had throughout the conversation. Am I thankful for having Ankylosing Spondylitis? YES! Without my diagnosis I would never have met a long list of some of the strongest people I’ll ever know. Thank you to AS for blessing me into a community of hope and comfort.

I have several sites that I visit frequently. An obsession of mine is The Feeding Edge. Jenna V. is amazing in her creativity. She uses art to help spread AS awareness. Her positive approach touches so many of us. I wake up each morning looking forward to what Art Apple A Day will come through my email, Facebook & Twitter feed. Her work is so remarkable I have requested my own “Jenna Apple” painting. Her work has inspired me to create a room in my home dedicated to apples. My husband wasn’t sure about an “apple” room  at first until I explained my reasoning behind it. Ankylosing Spondylitis has made such an impact in my life, good and bad, that the meaning behind the room is crucial in my battle. It will be a reminder to never give up the hope that tomorrow there may be a cure. Jenna and I are always joking with each other that it’s kind of scary that we have so much in common. We both are always looking ahead for the next possibility to help spread AS awareness. Jenna and I physically live several states away, but we know we can come to our AS community and feel right at home together. My hope for all of you is that you also find the strength and comfort in our community. Move on in, the neighbors are great!

Below is a list of some of my favorite AS Communities. Check them out! Together We Can Help Set Things Straight!

  1. The Feeding Edge & Art Apple A Day
  2. Spondylitis Association of America
  3. Ankylosing Spondylitis Awarenes Project (ASAP)
  4. Ankylosing Spondylitis Mom
  5. Loving With Chronic Illness
  6. Ankylosing Spondylitis Answers
  7. Spondyville
  8. Live Art.fully
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.

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.

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.

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