When I get knocked down…

GoodThingsComeAs many of you know, dealing with A.S. can be quite a battle. A few nights ago, I was walking in my bedroom when I slipped and fell to the ground. Thankfully, I landed on the carpet, but it still was not a good feeling especially because I was in the midst of a bad flare. As I lay on the ground, frustrated, in tears, feeling defeated, and unable to pick myself up, I realized something.
Throughout a lifetime of dealing with A.S., there are many times where we can feel beat up and knocked down. However, if we allow ourselves to stay down, what kind of life are we living? I promised myself soon after my diagnosis that no matter the progression of my disease, I will always fight back. I will not let A.S. win. I will fight for a life filled with joy, new experiences, and adventure. No matter how many bad flare days I have, I will not allow myself to be held back by this disease. NicoleMaherBioPic_Walk Your AS Off
Laying there on the floor, I realized that if I did not pick myself up, I was letting A.S. win. I refuse to do that. Slowly and painfully, with the help of my boyfriend, I got up off the floor.
When I was finally standing again, rather than feeling defeated, I felt victorious. This may have been one small challenge that I overcame, but the next time I fall or A.S. brings me down, I can think back to that moment.
Don’t give up the fight. Don’t ever let A.S. win.
 

 

 

6 thoughts on “When I get knocked down…”

  1. Good for you Nicole. Although I don’t have AS my daughter Emma does and like you she fights back all the time. I have great admiration for you all and I will walk your AS off for all of you!!!!

  2. Nicole,
    I understand completely about being active then having it all come crashing like a house of toilet paper. My family lived to compete. My sports filled life started as mascot for a girls softball team my Mom coached I was 3 & just strong enough to collect 1 bat at a time or shag stray balls. I started playing sports at age 5(6 was the age u had to be to play don’t tell the league). Community sports through Junior High then I was a 5 sport kid, 4 of them i got my Varsity letter. After H.S. I got bored quick & joined 2 volleyball leagues and started playing street Hockey. I also was playing football in college. The football saw that i slowed a bit when I injured 2 discs in lumbar spine. Ending my extremely short (3 weeks) triumph of becoming the back up center. I believe I forgot to mention that I am only 5’7″ & was officially the 2nd shortest player on the 62 player roster. So now I have back issues & only 17 years old. No doctor would operate. 5 years of any & every type of therapy (Western – Alternative/ experimental homeopathic & Eastern. No relief until I got the surgery. 4 months later I was on the ice playing hockey (as a goalie) i worked up to playing as high as possible even against the big boys during off season. I was in pain but always though it was the football injury. Until 1 day I couldn’t move, felt like been in a train wreck, bed ridden almost 2 weeks & pain beyond any of my sports injuries. Doc was at a loss then tested me for HLA-B27. Sure enough Positive & my xrays revealed that the A.S. Was aggressive as it showed us the 3 vertebrae that were already fused & signs of several spurs forming. I was diagnosed very late at the age of 40, actually was 3 days before I turned 40. I had played 20 years of competitive hockey & just thought its a bad back tough it out whimp, playing hurt is part of the lifestyle. My A.S. Flared up so fast & aggressive that I quit playing had to stop working because of the pain & extreme fatigue. It felt similar to getting anesthesia for surgery. Since 2008 I have had pneumonia 8 times 3 of them I was quarantined because twice diagnosed with Swine flu & 1 for T.B. . I am unable to take any of the inhibitors because doc said next time I may not make it out( but was told that all 3 times…still here.) in summary since November 2008 my back has fused from tailbone to T-12 L-1 space & neck has spurs. Also found that both knees are looking good, for a 65-70 year old doc said. I have 3 kids 8,13 &21 plus 2 year old Grandkid. I am an archery

  3. I was diagnosed with AS in 2014 at age 58. I had symptoms my whole life. But, in my 20’s is when I clearly remember what I would call a flare. I was always very athletic and still very active. I find it interesting reading these comments that many with AS have been athletic and have had a very active lifestyle. I blamed most of my pain from my active lifestyle. Because I did not sit still for very long.. it was easy to use my moving furniture around the house, or scrubbing a floor, or running etc.,, when I was young I was a competitive swimmer, did gymnastics, diving, basketball, track, a cheerleader. So, it was easy to explain why I was sore or had an injury. Now all my eye infections, recent diagnosed with scoliosis, neck fusing, plantar fasciitis, stomach problems, muscle pain all over… finally has a name. I went to many doctors but, none thought of AS because I was a female. I had a heart scare and a brilliant cardiologist thought of AS and sent me to a Rheumatologist. It was confirmed from X-Rays, symptoms and DNA .. I had AS. Now I will do whatever is needed to get more attention to this disease especially for women that are suffering and doctors don’t understand to check for AS. I have been on Methotrexate for 6 months. It has given my life back to me. I wake in the morning and can get up with very little pain. After 2 years the plantar fasciitis has cleared up. I can drive longer then 30 minutes without being in pain. I knew I was in constant pain but, had no idea how bad off I was until the pain lessened. I am not 100% but, a 80% and thanking God for this. I still fall down a lot. I think because of the scoliosis I must be off balanced. It doesn’t take much for me to get off balanced and I can’t catch myself. I was told last week I will be on the Methotrexate the rest of my life.

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