Ankylosing Spondylitis

Winding Up AS

Apr
19
2012
question-box

Have you ever watched a child play with a jack-in-the-box? You see them slowly wind the handle. As the music plays they begin to giggle in anticipation of the clown that is about to appear, and then suddenly...POP! The child has a look of surprise as if they didn't know it was coming. They wind again, and the same result happens, shock and surprise. I believe living with a chronic disease is a similar constant surprise. I have learned once you have one autoimmune disorder, it is not uncommon to get a second, third or even tenth! Each time I step into the Rheumatologist office I am confident that all is going to work out and be okay, then...POP! I have a look of shock and surprise. There is a new medical hurdle to be jumped. It seems to be a never ending cycle. The chaos becomes almost comforting. What about when the box doesn't open? You get to that moment of silence, which in my world becomes a very uneasy feeling. I have gotten so used to that "pop" feeling that as odd as it … [Read more...]

I’m Dangerous

Jan
05
2012
tree-on-rock

Those of us fighting Ankylosing Spondylitis or other illnesses know that every day is a test of our courage and strength. We question if today will be the day when we find a cure, our energy will be restored, or even if we will find a bit of relief for a few moments. Being that it is the start of the new year, I couldn't help and look back for a moment to realize what an adventure my loved ones and I endured in 2011. Between the daily struggle of my chronic illness, my mother's continued health battles, my daughter's cancer fight, and unfortunate loss of her eye, I quickly realized as hard as it was at the time, in the end, we survived. I saw a quote by Josephine Hart that says, "Damaged people are dangerous. They know they can survive". I found so much truth in her words. I clenched my fists each time my doctor found that my medicine wasn't working to help my AS. I would fall into that ever popular deep despair moment. I switched meds 3 times in a year. Those of us with AS know … [Read more...]

The Season For Health

Nov
28
2011
GrinchFLAGC

I love this time of year. I love it for the festivities and the traditions, for the carols, lights, and gift giving. Some years I do more than other years – my decorating and baking frenzy ebbs and flows depending on my health (both physical and emotional.) This year I am more excited than I’ve been in quite a few years. I’m not sure exactly why but I think that it may be that sometimes we go through experiences and times where our lives reveal new appreciations and like The Grinch - the change causes our hearts to grow a few sizes bigger. Our understanding of what is important becomes that much clearer and we can then move out of the trudge of life and into loving it in a new way. I have learned - truly learned - this year to Choose Joy to Choose Positivity and to Choose Happiness. I’ve learned it from some amazing women, some amazing warriors and fighters who are also constant lovers. I thank you Holly and Teresa and Jennifer. I thank you Janelle and Betsy and Heather. … [Read more...]

Surviving The Difficult Days

Sep
12
2011
Ankylosing Spondylitis

Some days it feels like there isn’t much fight left in me. Some days I want to crawl in bed and pull the covers up over my head and stop and hope the world forgets about me and just allows me to slink into my safe place and hide. I think there would be a lot of people who know me who’d be extremely surprised to hear me admit this. Jenna? The eternal optimist who smiles and laughs at life and always seems so together and happy – she wants to do what? Now, don’t worry about me I'm just allowing that little doubting voice to think about this for a minute. If I went back to a time I when wasn't following my dreams what would happen? Fighting chronic disease is hard; following your dreams at times can be even harder. I wasn’t working at much then because I was in so much pain and distress, I was merely subsisting and surviving day by day due to the ravages of my AS. Why does this seem like a good option some days to go back to that time? That horrible time. Why do we let … [Read more...]

Head, Shoulders, Knees…and Toes?

Aug
31
2011
girls-dancing

One Summer evening I was entertaining the kids with different games to tire them out. I came across an oldie but a goodie. We have all heard, danced & chanted along with this wonderful song as a child. Head, shoulders, knees and toes. As a child we do the movements with so much enthusiasm. The giggles that came from the kids throughout each new movement was such a beautiful sound. Each time they moved on to the next phrase the silliness would increase. I look at these words now as a person with Ankylosing Spondylitis and realize the song takes on a new meaning. It's strange how easily I can relate it to my AS. So many unrelated ailments and yet, in the end, they come back to this chronic illness I fight daily. So let's put on our dancing shoes and see how AS moves to this children's song. Head, shoulders, knees and toes, knees and toes. And eyes and ears and mouth and nose. Head, shoulders knees and toes, knees and toes. Head - Can I even move my head today? My neck is so … [Read more...]

Choose to End Our Abuse

Jun
21
2011
broken-mirror

There are many different types of abuse in our world. Sadly, the list is long. Each with their own trace of horrible scars that must be hurdled over. When it comes to having a disease like Ankylosing Spondylitis I have noticed, not only for me, but for many others with a chronic illness we find ourselves doubting our equal value in this world. The self-abuse attacks us at our weaker moments. Meaning, we "torture ourselves" for not being perfect. Are we any less? In reality we already know this answer. ABSOLUTELY NOT! We're just as valuable to this world as the "healthy". On the days we can barely move, when we have to cancel plans, or we cannot be the super hero we want to be, the doubt rises. The exhaustion and pain has set in and it looks like their is no light at the end of tunnel. Rolling up into a depressive ball seems like the only answer at that moment. It's controlling you, and you don't know how to make it stop. I want to first say, that these days can happen, and it is … [Read more...]

Uproot those thoughts and plant anew!

Jun
15
2011
AS Awareness - Art Apple A Day - Jenna Visscher

I’m sitting on my front porch, enjoying the quiet sounds of summer and clicking away on my laptop. In the last few months I lost sight of who and what are important to me and it took a recent very difficult situation to cause me to step back, evaluate, and adjust my life. I think that may be the way of learning and the human spirit – realization, self-analysis, adjustment, action. I am now taking action to make some corrections in my life. I’m making changes for me – not always a popular move but I’m moving forward none the less. I have a spiritual teacher – I call her that because she is truly wise and lovely. She is a life gift to my soul. Teresa tells me over and over – “you are enough.” This mantra of sorts was a completely elusive concept to me when she shared it. What did that mean? How could I become comfortable with such a foreign concept especially when I had held so protectively and deeply in my gut that I wasn’t enough – that my disease and my physical … [Read more...]

Where Does It Hurt?

May
18
2011
high-heels-path

Many people who suffer from not only Ankylosing Spondylitis, but also other autoimmune disorders are familiar with these four words. The problem with the question is that there is no simple answer. For me, my symptoms can change daily. For example, yesterday I couldn't turn my neck, but today my feet hurt so bad I can barely stand on them for longer than 5 minutes at a time without cringing in tears, and tomorrow I may be just fine. So when I get asked from the doctor what is hurting I have to ask a question right back...are you asking for today only? Here is the topper, the list doesn't end with physical ailments. When you are experiencing a flare, haven't slept in days, smile through pain, and had to adjust your day due to something you cannot control, your emotions can hurt. The frustration you feel is at an erupting peak and helplessness sets in. Anger jumps on board and then you are begging for a few hours of shut eye. You hope your body can re-coop so that whatever physical … [Read more...]

It Worked For Mona Lisa

Apr
19
2011
girl-world-in-hands

I had a doctor growing up who nicknamed me Mona Lisa. He said I hid behind my smile. I was a mystery to some doctors partly because if they asked how I felt, I would grin and respond with, "I'm fine". He would say that he could see the wheels turning in my head, and the burdens I would carry behind my eyes. I'm not sure if it was my age at the time or just my strong will that kept me from giving up. Through my younger years I felt if I smiled through pain it would keep my family and friends from hurting along with me. I truly thought I was protecting them. I faced multiple health challenges as a young child. I did it with innocence, humor and a positive attitude. Don't get me wrong, there were tears when the pain hit it's various peaks, but I would always try to keep that upright arch on my face. I was never a very good liar, and to be honest despise people who do, but I sure learned to mask the pain. Now as an adult only 3 years into my diagnosis with Ankylosing Spondylitis, I have … [Read more...]

What was I thinking?

Apr
08
2011
Hope and Apples

What was I thinking? I was supposed to post to The Fight Like A Girl Club over a week ago. As a power team writer, I write on topics related to the disease I fight, Ankylosing Spondylitis, and post once a month. Unfortunately I’m fighting AS which means that I don’t know when I’ll get sapped of energy or deal with a flare of pain. When it hits I may not be sidelined as often as I was before I started Remicade, but I will slow way down and if I am not aware that I need to slow down, I can get very sick. So forgive me y’all – I’m pooped! What I’d like to tell you all about in this post is that I’m also fighting to keep my year-long awareness campaign alive by creating a piece of art everyday in the form of an apple. If you haven’t seen my project, please stop by my blog, The Feeding Edge and take a look. Six months ago I came up with an idea that I thought would get some attention – if I could pull it off. A piece of art in the form of an apple, one a day for an … [Read more...]