K

Face 789

I’m not sure where to begin so this will likely be a rambling, train of thought type story. I am a 27 year old female with ankylosing spondylitis. Wow, I am in Microsoft Word, and as I typed “ankylosing” it underlined it red as not recognizing the word. It wanted to change it to “enclosing.” That is funny. And perfect. Because that’s what I feel like all the time about this disease. No one is familiar with it. People want to change its name… to “bad back” or “undifferentiated inflammatory disease” or something obscure. Anyway- In February or March 2009, a few months before my wedding, I had severe chest pain, right in the middle and a little off to the right side. I couldn’t lean my head back without yelling in pain. I just had to lie there and take vicodin. The doctors said it was inflamed from coughing. I had endoscopy which revealed nothing but my usual eosinophilic esophagitis, which I already knew about and would not cause this type of stabbing pain. The pain went away after about 2 weeks gradually. I was scared it’d come back for my wedding… and my honeymoon… and was still bewildered about it… until November 2009 when I had excruciating lower back pain on the right side. It was so deep and so low, I kept saying it was “deep in my ass” pain. I used to be a high flying cheerleader and gymnast and I know what injuries feel like and this was not an injury. Everyone said it must be. I knew it wasn’t. I was at home for a week. I couldn’t hardly get up except to walk to the bathroom, and by walk I mean shuffle, cry, and lean on my husband. I remember specifically hugging my husband as he helped me into bed and at the same time my teeth were chattering the pain was so bad. I cried and it hurt to cry, so I stopped crying and just tried to go numb. Finally my mother in law took me to an appointment to get a cortisone shot. Finally I started to get better gradually. I had to stop my newfound favorite activity, pole dance fitness, and was upset about that. It was an extension of gymnastics for me, just using a vertical bar instead of a horizontal one. I thought I was being punished somehow for doing it, although I knew in my heart I wasn’t doing it to be a stripper or be anything trashy, I loved doing tricks and flying around the pole for fun and fitness. I started researching on the internet and came across ankylosing spondylitis. Finally! I knew this was what I had! It explained the chest/ribcage pain and my back pain. I took it to the back doc and brought it up myself. He said “took the words right outta my mouth”… yeah right… you weren’t going to mention it until I brought it up. He then stupidly measured my ribcage exhaling and inhaling. He said I probably don’t have it “because people with AS have limited ribcage movement of only an inch and yours goes a full 2 inches.” This struck me as idiotic because I clearly told him I was only now coming down with symptoms and anything that fused my ribcage would take years of damage to occur. You don’t just automatically fuse. So I knew he was a crockpot and went to a rheumatologist. He did my HLA-B27 blood test and called me while I was driving home one day to say it was positive. I knew it. So, he said this is probably what’s going on. I felt like I’d just received the worst news of my life. I thought, bitterly, “So, I have a condition which will cause severe pain, deformity, cause me to be stooped over and immobile like a hunchback and there’s no cure for it…. So pretty much the worst diagnosis you can get, because unlike terminal cancer, you are LIVING IN A PRISON OF YOUR OWN BODY. It doesn’t kill you and end the pain.” That sounds insensitive, but that’s how I felt. I know cancer is awful, but I just felt like someone with a terminal diagnosis would be in pain a short time and the pain would end. This was like a sentence of “life in pain.” Then I found the SAA website and found there actually are complications with AS of the heart valves and lungs so it actually could be associated with increased morbidity. Awesome. I was feeling low down and hopeless. All the drugs they can give you cause bad side effects too. I took Celebrex for awhile but stopped because of stomach/bowel issues. I don’t want to take TNF blockers like Humira because they are so new they aren’t studied enough, in my opinion, and can cause cancer. I know lots of people swear by them, but unless I am in severe pain on a daily basis for a long time, I’m not going to take them. Which brings me to my next point- since 2009 I have had days of sacroiliac joint pain, sciatic like pain, and ribcage stiffness like I just slept on rocks. But some days, I’m ok. I still pole dance. I may be the only pole dancer with ankylosing spondylitis. Hopefully someone can refute that as I’d like to meet someone else like me. I am lucky (for now) that I can still do it and I’m not in severe pain every day. But, I also know I don’t know what each day will bring. I recently had an MRI showing sacroiliac joint inflammation and was limping around for awhile. I started wearing flats every day. I’ve been somewhat anxiety-ridden, not knowing what the future holds. No one knows their future, but it IS MUCH HARDER when you have a condition like this knowing it could flare up at a most inopportune moment. What have I learned from it? I guess to live in the moment. After my 2nd flare up, I remember saying to my husband how excited I was to be up and doing the dishes. I LOVED that I could actually DO HOUSEWORK!! Unfortunately I have other medical issues that have mysteriously popped up and I think they could be related to A.S. Can’t prove it but I believe so. Like colon inflammation and unexplained liver problems. I had a biopsy showing “focal congestion and mild fibrosis” no one knows what it means. It’s usually from heart failure. I’ve had echocardiograms and even a right heart catheterization procedure. The heart seems in the realm of normal. Now all my ultrasounds say fatty liver/mild fibrosis. No one can tell me why. What does this mean? Is it from inflammation from A.S.? It is a chronic inflammatory condition so I don’t see why not. Did I drink too much in college? They say no. Will my liver fail tomorrow? They don’t know, could be tomorrow, years, or, never. So as a female in my late 20’s thoughts swirl in my head like should I get pregnant? Will everything spiral out of control if I get pregnant? Do I go back to my teaching career I started out on? Probably can’t hold down that job because I need to be off all the time for doctor visits and procedures. All I know now is this: I am taking adult classes to become educated in the Catholic faith and will be baptized at Easter. I do have anxiety about m health but it is understandable. So I do NOT feel guilty about taking a Xanax every now and then so I can relax. I am hoping and praying to never have a bad flare again. And when I do have mild or moderate pain I am trying to still go out and not be Debbie Downer laying in bed. The last mall trip a friend and I took was painful. I limped. But I took a Percocet and fought through it. Afterwards I didn’t remember buying half the crap I bought, but we laughed about it. And I’m glad I went out. I probably should have been out doing charity or doing some good for society, but sometimes fun and silly shopping with your friend IS OK. So all you AS’ers my advice is to be strong, don’t let doctors push you around, stay on their ass and demand results, calls, and the help you need. Keep all records. Get 3rd, 4th, 5th opinions. And even though there are horrible google images of ankylosing spondylitis or “bamboo” spine… try not to look at them. It does no good for your spirit.

Virginia, United States of America


One Response to “K”

  1. Dear K,
    Thank you for sharing your story with us. I also feel the most important part of living with this disease and not letting it get the best of you is by taking care of your spirit. I try to always look for the positive things in any situation. I love your attitude, stay strong girl!
    Sincerely Cookie

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