One Out Of Six Isn’t Bad

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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.

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

Winter weather

Weather vs. Ankylosing Spondylitis

By | Featured, General | 13 Comments

Now that Fall has arrived I sit and wonder what the cooler weather will bring to my adventure with Ankylosing Spondylitis. I’m not sure how I exactly blocked out last year’s colder season, but realize it is here to stay, at least for a few months. When it comes to a person with AS I have learned that it all depends on the individual patient on weather preference. Some love the warmth of the Summer, some the brisk chill of the Winter months and some of us just want a split of the two. You know, the “perfect” weather.

Summer Sighs

As I bundle up and head to the bus stop for school with my kids I’m already hoping for the warmer days. I then think I must have forgotten those days where the heat left me almost immobile. Those days just recently slowed down since September just left us. With AS I look for every opportunity for pain relief and would often head to the pool to cool off in hopes that maybe the pain would be a little less. I would then get out of the pool and that Georgia sun is once again scorching down on me and instantly swells my body all over again.  Air conditioning is definitely a best friend of mine in the Summer time. I was always a sun bunny in the past but, unfortunately, I have had to learn my limits now.

Winter Woes

The cold nights keep me snuggled up looking for any form of relief from the stiffening of my joints. When Winter comes, for me, it is pretty impossible. The winds can be brutal here in the Winter which makes our cold weather slap me around a bit.  I never know if it will effect my hands, feet or back that particular day but unfortunately I wake up knowing something is going to be sore daily in those few months. I have accepted Mother Nature’s cruel weather tricks, but really wish there was something more than a heating pad and meds I could use to find some relief during the frigid weather.

70 and Sunny

For me, there is NOTHING like a Fall day. Not to hot, not to cold, just perfect.  The sun shining yet not with radiating an uncomfortable heat or cold.  A stroll around my neighborhood with the cool wind blowing gently through my hair.  The air massaging my skin as to say, Mother Nature is not a complete witch, she does want you to enjoy some type of weather. I seem to feel more energized and just happier all around. I guess it comes back to when you feel well physically, the emotional drain picks itself back up to help you push on.

Share With Me

AS’ers – Which do you prefer hot or cold? What helps you through those uncomfortable weather days?

Support System – Can you notice a change in your AS loved one when the weather changes, either physically or emotionally?

Friends at beach

The Disease That Keeps on Giving

By | Experience, General | No Comments

It is said that people come into your life for a reason, and for me, that is so true.  I have realized that having Ankylosing Spondylitis has brought me across some of the most amazing people.  The many AS patients I have met in the infusion room and online are a huge comfort.  They help me to know I am never alone in my fight.  Although with the multiple frustrations and lonely days feeling I have to constantly battle this disease I am still comforted with each new person I meet that can and/or will attempt to understand my pain.  Since my original diagnosis with AS, I have been sent to several other types of doctors to rule out different illnesses that have sprung up throughout the process of my treatments of AS.  One that sticks out to me is my visits to the Oncology/Hematology office.

My New Friends

I think the first visit was the hardest.  I felt almost ashamed of my pain and exhaustion or even being at a point of hopelessness.  Vividly remembering my days before my first visit being so silently scared and angry that I may have to fight for something else and wondering why me?  Then I walked in, with a full head of hair and not fully dependent on another.  I didn’t need someone to sit next to me in a chair holding my hand to convince me I could be strong enough.  I already knew this, I knew I could fight without wondering if tomorrow would come for me.  As I looked at these worried faces, bruised and weak I wished I could make it better for them, I wished I could give them some of my strength that I thought I didn’t have before I opened that door.  I wanted to shed tears for them but knew this was a place of hope for them.  Maybe today they would be in remission or find a cure.  I hoped for them too.

As I sat filling out paperwork I met a man who openly began to share his story with me.  He was in his 70’s, fragile, sitting in a wheelchair but with the spunk of someone younger than myself.  He told me of his diagnosis and his experiences.  Instead of talking about the negative he only spoke positive.  He talked of his family and his hobbies.  How he found more time to appreciate his surroundings.  As he talked of his life, a young mother, with thinning hair chimed in as she attempted to chase her toddler through the waiting area.  She shared how she she was diagnosed when her child was a few months old and how she just prays daily for a few more minutes with her child.  Not a few days, but minutes.  Not once did either of them look for some sort of pity.  As I listened to their stories I was left speechless.  Those who know me, know I am hardly ever without a word to say.  I could not say I understood because I didn’t know what it was like to wonder if today was my last.

I walked back to the area where patients were getting chemo.  I watched as they were getting frustrated from the nausea or just plain old exhausted from the energy it had stolen.  As I got my blood drawn and the nurse cheerfully asked how I was feeling I gave my answer with guilt.  I was feeling well.  I met the doctor and immediately he told me I was in the clear for right now.  It was a huge weight lifted off my shoulders.  Round one went to me.  I again was feeling ashamed of my self-pity that I had earlier in the day.  As I walked out I passed both the older man and the young mother.  We said our goodbyes and wished each other well.  Little did they realize the impact that they had on me that day.

I Can Do Something

I realized that there are definitely people out there with worse health problems but that also it was okay to feel a little shafted with the AS diagnosis.  My AS was blessed upon me to help me appreciate what I do have in life, to hold it, and to cherish every “good” moment.  I need to remember when I want to give up why I am holding on so hard in the first place.  I look in my kid’s and husband’s eyes and know there is a reason to keep on staying strong.  I’m allowed to feel upset but have to also know that there is hope.  I may not have a cure for my disease but that if I could not win this one battle I could still do something to help.  If my words could help just one person, like the words of my 2 new friends I met that day, and show that having courage and hope can mean so much, I will have succeeded.  People with AS do not “complain”, we struggle with the question “why” this disease is so uncontrollable.  We want others to not “pity” us but to “understand” us.  It is frustrating when we cannot explain our pain because it is not a visual illness.  Because of this, we can hurt as much emotionally as we do physically.  I will hold tight to my stubborn ways and never allow myself to give up this fight.

Share With Me

AS’ers:  Has AS “helped” you in any way?  Has meeting other AS’ers helped you to find comfort in knowing you are not alone in this disease? How do you help spread awareness?

Support System:  How have you tried to help comfort your AS loved one?  What works?  What doesn’t?  How have you helped spread awareness?

Hope box

The Birth of United Voices for Ankylosing Spondylitis

By | Experience, General | 7 Comments

WHAT? That is what I have? Really? Those were the first thoughts that went through my head when my Rheumatologist gave me the diagnosis.  What does this mean for my future?  I am young. I can’t possibly have an arthritic condition, but I do, I have Ankylosing Spondylitis.  I had never even heard of this crazy unpronounceable word and now I was diagnosed with it.

Like many AS patients, I have the genetic marker HLA-B27.  My doctor said he could tell by my “personality” almost instantly that I most likely had the gene.  I am strong-willed, short-fused at times, a bit of OCD-like tendencies and quite the perfectionist.  I try to take on the world and really hate being told no or I “can’t” do something.  Those words only make me push harder to prove others wrong.  I now feel I can admit this since AS patients often have some of these traits and I feel “normal” because of it. As I sat in the office, my doctor was explaining the disease but I could hear no words.  I was kind of in shock.  I had never been relieved and scared all in one moment.  Yes, I said relieved.  It answered years of frustrating visits to different doctors being told these symptoms must be in my head.  They don’t relate to each other, they don’t make sense, I don’t “look” sick.  I almost started believing them.  Maybe they were right, maybe I was a little off my rocker.  Within a 5 minute visit to a Rheumy I was given a sense of peace, reassurance that these symptoms were real.  I had never been so thankful for something in my life.  A diagnosis that could try to control me definitely scared the crap out of me but gave me a reason to never doubt myself again.

Now what do I do?  How can I live “with” AS not “for”it?  I wanted to stop it in its tracks.  I was going to be a new case where it just goes away or so I hoped, unrealistic, but as I mentioned I really don’t like being told, I can’t.  I knew I was going to have to learn to slow down a bit and allow the laundry to wait a day, the groceries to last a little longer, teach the kids to help around the house a bit more and limit my all day excursions to only a few hours.  Rest was going to have to become a daily habit.  This was not me.  I was constantly on the go and I liked it that way no matter how exhausted it made me.

My hope for United Voices for Ankylosing Spondylitis

My hope is exactly that, hope.  Hope that patients find comfort and reassurance that they are not alone.  Hope that together, spreading awareness of the disease will educate others to help them understand what AS patients go through.  One of the hardest things at the beginning for me (and sometimes still to this day), was a feeling of loneliness.  I felt nobody got me.  As if I were always complaining or Debbie-downer and that was not normally me but I just didn’t have the energy to fight it. On the “bad” days waking up was even a chore. Trying to get out of bed after a night of restless sleep due to the horrible pain that even the pain medicines couldn’t fix.  I try to stay positive and live by the saying “God only gives problems to people that can handle them”, but as most AS patients know, on those “bad” days, it is really, really hard to keep that smile. The more people I met through online AS groups, in the infusion room and with each visit to the Rheumatologist I found that my complaints were not uncommon.  There were tons out there just as uncomfortable as me. Before meeting fellow AS’ers I was afraid to vent, as if I was doing something wrong. I decided that I may only be one person but by creating UVAS I can bring patients, their family and friends together to find the courage to share their experiences to help others.  I don’t think that the people I have met with AS realize how much they have helped me.  I have learned so much from them just by talking with them.  I am no professional but I do believe it is important to share experience with others.  Every little bit helps.  I constantly tell my children that it is important to learn something new daily, even if it is something small.  A day without new information is a wasted day in my eyes.  If I can help spread awareness to others than I feel I have accomplished my personal goal of UVAS.  Please find the courage to share your experience with us and help spread awareness.

The Disease – Ankylosing Spondylitis

For those new to this disease here is a bit of basic information. Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort. The inflammation can cause the spine to fuse in a fixed, immobile position, lovingly nicknamed bamboo spine.

AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved and rarely, the lungs and heart can be affected.  In the end, for me at least, AS is pain that brings you to the point of trying anything to have some relief and feel better for longer than a day.