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Amanda

Coffee cup on counter

Emotional Breaking Points with Ankylosing Spondylitis

By | Experience, Featured | 8 Comments

When it comes to Ankylosing Spondylitis, and we hear the word “broken”, we usually assume it must mean a bone of some sort. But, in the case of this post, I’m focusing on emotions. This isn’t a disease we volunteered for and the challenges test our limits daily. I’m honorably a mother, wife, sister, aunt, and friend and to constantly battle to pretend is exhausting. I find myself wrestling with my words as they want to leave my lips as to catch them so my loved ones won’t continue to hear my broken record or complaining. Sadly, I’ve realized this has become their mindset or even worse that I’m exaggerating, but as you know there is no way to exaggerate this pain. It is real, if anything we underplay the pain for their sake. Although, I try to limit my health hurdles talk, I find myself venting to my loved ones. When something, unfortunately, consumes so many of your days between doctors, flares, insomnia, infusions, medicines, and so on, you pretty much live a life that makes this become one of your unintentional topics. So I continue on my path of pretending to be well.

A few weeks ago, I got to that point. The point so many of us hit many times in our journey. I broke. I shattered really. I was going about my normal routine of playing pretend and something triggered me to break. It was something that an onlooker would think was so silly, but for me it was that last and final thing that I just couldn’t pretend to smile through for one more second. I’m embarrassed to share it with you, but at the same time I know as fellow AS’ers it is vital that you know you’re not alone and hopefully you can empathize with me so I must tell you the simple silly final straw that sent my week into a tailspin. Ready?

A cup was left on our kitchen counter.

Can you believe it!? I mean how dare the culprit in my family drink something and not clean it straight away! Normally, I would’ve just put it in the dishwasher. This time, I broke into a million pieces. I went from there and just shut down to everything around me. I know it had nothing really to do with the cup, but I needed something to focus on, and I found it in the cup.

When I wear down like that I go through an array of emotions of what I like to compare to a visit to the zoo. I start at the lions. I roar in nice and loud, make my presence known. Really what that is in our AS world is I can’t pretend I’m not hurting for one more minute. I need to release all my hurt somehow. Next, onto the bears. I say this because they hibernate. My bed becomes my friend. I don’t want to be unkind with any frustrating words or be bothersome to my family since I’m not feeling well. Next, onto the aquarium. Here you can choose whichever aquatic animal your imagination desires. I relax in the bath to get the warmth on my hips and back for a bit. I have music on that relaxes me. Finally, as I begin to feel stronger I’ll move to the giraffes and go for a walk or to my Pure Barre class to start stretching out again. Trying to stay long and flexible is so important to our fusing bodies. It works for me, not sure why or how, but it does. If you haven’t found anything yet, feel free to try my zoo. If anything, it’s entertaining and keeps your mind busy.

I think as AS Warriors we can control so little of what is happening in our own bodies and it becomes extremely overwhelming. We look for any possible control we can have in our life. For me it was a cup, for you it may be grocery shopping or mowing the lawn, but we all have something that will make us break. Mine are different each time. I always think I’ll accept that I will not be able to control what is happening to my body, but to be honest I’m just too stubborn and hopeful. On one hand, I have never been good at taking “NO” for an answer, so the fight remains in me. The other end of this is my enormous feeling of hope. I truly believe if we continue to spread awareness, we will find a cure.

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!

Sunrise

Conquer What You Can

By | Experience | 6 Comments

I always considered myself a strong person. I faced every hurdle that came my way without hesitation, and with courage and hope. I live a life with Ankylosing Spondylitis so every day can present a new adventure. To be honest, I wasn’t sure when I started this post if I was ready to share something that has consumed so much of my life recently. I was wrestling with the question if I was exposing to much. I realized if I have learned anything from having a chronic illness, it is never good to keep emotions bottled up. This new issue wasn’t even AS related, and those with AS know, this is a rarity for us. I thought if at least 1 person could relate to the crazy roller coaster ride I’m on and can find some relief in knowing they are not alone, it would all be worth me sharing this story. I am so used to hiding behind my smile due to AS, but this new test was more than my face could shield.

My story starts about 3 1/2 weeks ago. I really was in a happy place. It finally seemed as if everything was on the up and up for my little family. My AS medicine seemed to be doing the trick, we were settling into our new home and enjoying summer. Then all of the sudden, our world was turned upside down. We found out my daughter would have to face a huge challenge and she was only 12 years old. The doctor found a mass on a MRI and they told me she had cancer. They believed at the time it was of the muscle (Rhabdomyosarcoma), near the orbit of her left eye. When I heard that word from the doctor I literally felt like I was spinning downward. I had to sit down, catch my breathe, and walk back to the room where my daughter sat with no idea of what news was about to be delivered. I knew now more than ever no matter what emotions I was feeling I had to be strong for her. We walked in and she sat there with the innocence I had always wanted to keep for her, within seconds we would give news that would change her forever. I took a deep breathe as the doctor shared the finding with her. As tears poured from her confused eyes, all I could do was hug her and tell her she could win this fight. It wouldn’t be easy, but I would be by her side. My heart was breaking for her and this was something I couldn’t make all better. I was her mother, I was supposed to protect her from bad things and this demon that popped up had no idea who it was about to challenge. We would conquer. The wonderful doctors that cared for Alexandra were as aggressive as my mind set was so we instantly hit it off. Within days she was scheduled for her biopsy. We went to the hospital and she was so brave. A young girl who had never had surgery hid her fear with the smile I displayed for so many years. I saw so much of myself in her. You hear these horrible stories of other people’s kids and your heart aches for them, but you never expect it to happen to your own child. It was a nightmare I couldn’t wake up from. The biopsy was supposed to take 45 minutes and as I watched the clock and the 2 hour mark hit, I started to wonder what was going on. Were they able to take out the mass? This could be good that it’s taking longer. Then the doctor walked out, his head down and my fear set in. He told us that the good news was, most likely, it’s a vascular tumor and not muscular. He said in most cases this is a benign tumor, but we would not know for sure until we got the pathology report back. As we began to be happy, he began telling us about how she was bleeding horribly during the surgery (which is why it was taking so long) and they were not able to get all the biopsies they had hoped. They would have to depend on the 1 they did get to find out if it was malignant or benign. He then began rattling the list of things that could happen if we do not act soon. She could face blindness, life threatening surgery, internal bleeding and as he kept talking I went numb. I couldn’t hear anything he was saying. All I could think was…is this the good news?? This is MY daughter, not someone else. She has to be okay. He promised us he would get her through this fight. The doctors were very thorough by doing 3 pathology reports. It was benign! They diagnosed her with Lymphangioma, which is a vascular tumor of the blood vessels. They said she was definitely not textbook as how it presented itself, but we were all relieved she would not have to battle a malignant cancer. She has quite the long, challenging road in front of her, but we will get through this together with hope and a positive attitude. She will face many tests, treatments and surgeries, but I have seen her bravery and I know she can conquer anything that is thrown her way. She is her mother’s daughter. We do not take NO for an answer!

Through this nightmare I have been reminded to appreciate the little things in life. I learned how precious each moment can be with my children. The important role that the power of prayer, hope and faith play when it feels as if your world is crashing down. I learned what it means to have the right support system in place for my family. I know I should conquer what I can, but at the same time, know that some things are beyond my control. I was used to medical issues for myself, but when it comes to your child, it’s a whole other ball game. I have learned that my daughter, at the young age of 12, is one of the strongest people I know. She is facing so much unknown ahead, and is doing it with the courage of someone 3 times her age. She has already decided this new challenge will not stop her from doing all the things she plans in the year ahead. Her strength and hope to conquer what she can is simply inspiring. I will protect her with every ounce of strength I have in my body and soul. I may not be able to make this bad experience go away, but I can help her stay positive. I tease her about being an AmeriCAN, but in this instance, it is extremely important for me to continually remind her that she is stronger than any health hurdle that will present itself. She may have to live with a tumor, but she never has to live for it!

 

Necklaces

Untangling A Knot…and More

By | Experience | 5 Comments

Recently I had a four day adventure with Ankylosing Spondylitis. I didn’t know at the time that it was part of my AS adventure, but by the 4th and final day I realized the huge role it played. Let me warn you ahead of time that for some, this story may seem a little strange or funny. You may think that it’s something not worth getting upset about. If you have AS, you know any extra loss of control can set you on an emotional roller coaster, so please bare with me. It started with me unpacking things in the bedroom of my new home. I am so excited about our first home that I’m almost too eager to get everything unpacked and organized.

I was unpacking my jewelery box and found that all of my necklaces were tangled so of course, me being me, I had to fix this instantly. I wanted all of them separate so they would lay nicely in my new jewelery drawer. I had a history of getting them tangled and almost enjoyed the challenge of getting them separated (strange, I know). On this day, for the first time, it wasn’t easy. In fact, it was almost impossible. On day 1 I struggled for almost 4 hours while getting 2 of the 6 loose and put them away neatly in the drawer. Day 2 came and my hands were so sore from picking away at the necklaces that it was quite the challenge. Were the necklaces winning the battle? This was not acceptable. On day 3 it now became everybody’s fault in my home except for mine. In my exhausted mind, I was having trouble because the kids kept interrupting me and my husband wasn’t offering to help. Now in reality my kids were being kids, they wanted a snack, or asked normal questions like permission to go outside and play. My husband, knowing my stubborn personality knew not to ask me if I needed help because I would most likely get mad and ask him why he thinks I am helpless and can’t do simple tasks. My mind was tangled at this point. The three of them were in a no-win situation…and it seemed so was I. This day brought tears of the frightful feeling of losing control. I had tears from the loss of my temper, tears because I knew why I was, and shouldn’t, be acting so insane, and tears of pain, but I just couldn’t control my frustration. I NEEDED CONTROL even if it was just over untangling a few necklaces. At about 2am I decided to step away and try again in the morning. After a normal sleepless night, this time obsessing over how to get the necklaces loose, I woke the next morning in extreme pain. My neck could barely move, my hands were raw and my back felt as if I got in a full out brawl. I kind of did, but I believe it was more of a mental fight. Day 4 was going to be the day. I was ready to win. I felt like I was in the last lap of a race, tripped, but got right back up and kept moving. I needed a fresh perspective, strength and confidence that I could overcome this challenge. Instantly I was able to get more loose and I was down to the last 2 necklaces. I was in the home stretch. I told my husband I would give it a few more tries and if I was still unsuccessful I would allow him to step in. I was ready to ask for help. The pain once again convinced me that it would be okay to ask. The time came and went and those 2 stubborn necklaces were still combined. My husband, as usual, was my knight in shining armor. He helped me win.

I’ve always been a woman who likes to control every situation, AS is teaching me otherwise. I’m willing to admit that sometimes help is necessary. I may not like it, but it’s also something that is a part of my life now. It doesn’t mean I am any less than another person, it just means that I have to learn limitations. It might sound crazy that I got this much out of a simple 4 day adventure to untangle necklaces, but it is a fact. I have a chronic disease, with no cure, that will give me good and bad days of health due to something I cannot control. Having AS is a constant learning and teaching process. It is also an acceptance process. I may be tangled some days, but give me a few hours or days, and I will once again be gently organized and somewhat free from the knots of pain.

 

Pondering

That Really Is The Question

By | Treatments | 2 Comments

I’m not sure if Shakespeare knew the impact his words would have when they first poured on to paper. “To be, or not to be: that is the question: Whether ’tis nobler in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles”. It’s a great question. If I am looking at these words and try to relate them to my Ankylosing Spondylitis, I wonder how far will I go to keep from a flare, be able to get some sleep or just have a day with a little less pain? Can I just “be” me, through even the worst of pain?

I must admit I’m currently feeling a little less than my best since I’m due soon for my next injection and the previous dose has had its magic, feel good powers wear away. I get frustrated because I know it’s close, and I even try to convince myself the only reason I’m hurting is I know it is almost time. I start with the “what ifs”. If I didn’t know it was coming would I really still hurt? Is it just mind over matter? I have so much to be happy for right now in my life. I keep trying to ignore the horrible pain and the complete exhaustion I am experiencing at the moment and focus on all the good. I want so badly to take full advantage of all of these extra exciting events in my personal life, but as many people with AS know, you attempt to give 110% and when you end up with several sleepless nights of pain as a result of giving your all, unfortunately, it can catch up to you, physically and emotionally.

So now having to wait a week until I get that little help of relief from Simponi, I have to turn back to the pain medicine which is something that can interrupt a person’s day. I was able to put the pain meds away for so many weeks I think I got spoiled a bit. My schedule is full during the day running errands and playing taxi for my children so pain medicine isn’t on the agenda when driving is needed. I will be honest that I do enjoy having the busy days. I love that I get to “be there” for my kids and husband when needed, but I wonder if sometimes when I am feeling less than my best if I am really there. I’m also in the process of moving into our new home so I have no time for the daily brain fog that so many lovely pain medicines offer. Deep down I get a guilty feeling if I take one during the day. As if I am doing something wrong trying to help ease the pain. I know that this guilty feeling I have is a bit silly, but I just can’t seem to shake it. I want so badly to feel “good” that I get to the point that the results of brain fog outweighs the pain. The loss of being able to control my situation is all very overwhelming.

Living with Ankylosing Spondylitis does fill each new day with choices. You have no option but to make them. If you have AS you know that there are definite plus and minus points with each action you take. Do I choose to push forward at whatever cost? I can’t speak for others, but for me, YES! Life doesn’t stop for AS, so why would I ever stop for it! If it means I get a bit run down or attend a few events a little foggy it will be worth it knowing I never let AS get the best of me. I choose to “be”. That’s my honest, simple answer.

 

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!

Ducklings

One Out Of Six Isn’t Bad

By | General | One Comment

Being raised in a large family was quite the adventure. We joke we could of been one great sitcom. There was no such thing as quiet in our home. If you wanted to be heard you had to be the loudest. Unfortunately, I admit that I find myself still a creature of this habit. As a child with siblings you know you always have a friend to play, someone to back you up, or even someone to blame. As an adult you quickly learn that those 3 qualities do not change all that much. You have a friend who understands where you come from. They know your happy and painful past and present. I have 3 sisters and 2 brothers. I fall in line as second oldest. For those of you who do not have the gift of a large family, let me tell you that life in a big clan is always “public”. When something happens, good or bad, in our family the calls are made down the line. Within 5 minutes we all know what has occurred. It can be annoying sometimes, but at the same time you know you will always be in the loop whether you are in the next room or thousands of miles away. This is something I would never want any other way. Although we may argue we will be the first to defend one another if someone from the “outside” tries to hurt one of us. We are each different personalities, but with a dash of similar characteristics.

I did not get diagnosed with Ankylosing Spondylitis until I was older, but my siblings have watched me over the years struggle with multiple health issues. Although I had to be strong I do  realize the strength that each of them had to hold. When they were young they had to get shipped to family or babysitters so my mom could come to the hospital for a stay, surgery and tests with me. Now being older, I have a sense of guilt for taking our mother away from them for so much time. I know it was nothing I could control, but still find the need to say thank you to my sisters and brothers for allowing me to have extra mom time. You guys never once complained or showed hatred for something I could not handle alone as a young child. You stepped up and proved that family truly does mean always being there for each other.

As of today, I am the only one out of 6 that has been blessed with the Ankylosing Spondylitis diagnosis. I pray it remains that way. I will gladly bare the pain if it means that my siblings will never have to experience a day as an AS’er. When I was first diagnosed I did urge my family to get tested for the HLA-B27 marker. I assured them that it did not mean they will ever have AS, but at the same time it would be something to definitely keep watch for in the future. Early diagnosis and treatment is key when it comes to AS. I am living proof. As far as I am aware all of my siblings are yet to be tested. I cannot shield them from AS, but I will do all I can to protect them from the pain and arm them with the proper tools to support me through this journey.

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