A.S. Face 0010 : LeeAnn Fine

I can tell you when and where I was born – May 12, 1980 in Florida. I can tell you how I grew up – with a single mom that struggled. I can even tell you about how my life is now – married, 3 children, at-home-mom, online college student. But, what I cannot tell you is what my future holds. You see, after a nasty respiratory infection, about 2 years ago, I started having chronic pain, muscle spasms, fatigue, and a myriad of other syptoms. After months of trying to wait it out, I went to the doctor and she told me that I had fibromyalgia. Fibromyalgia? Hmmmm…this is not just a “feeling” of pain; this is real pain that debilitates me. “Oh well”, I said, “no big deal”. “I’ll be fine”.

Gradually, it got worse. I started feeling weak and wasn’t able to do much anymore. I got pericarditis (inflammation of the lining around the heart) and it became chronic. I had to have my gallbladder removed and developed kidney stones. My husband began questioning why I acted like an old woman and didn’t want to do anything. I finally told him that I was in pain, had been for several years, and that it was getting dramatically worse. He got upset with me and asked why I hadn’t gone to the doctor. My only answer was “I don’t know”. Really, it’s because I don’t take the time to worry about my health unless it’s an emergency. I’m more focused on taking care of my family and at-home-mom/wife duties.

One morning, I woke up and couldn’t get out of bed. My body was so stiff. Brian, my husband, came in to help me up and he had to pull me to a sitting position, while my arms shook. He got a little emotional and demanded that I go see a doctor. Off I went. I explained my last two years worth of history to the doctor and my current symptoms. I broke down crying because I was ashamed of admitting my weaknesses. I had always been so strong and now my image was blown. I pleaded with him to find out what was wrong with me because I knew this wasn’t just fibromyalgia. He sent me to a rheumatologist.

Once again, I went over my history and current symptoms. Right away, he told me that this wasn’t fibro and started taking x-rays and blood tests. Two weeks later, I went back in. On August 11th, 2011, I was diagnosed with Ankylosing Spondylitis. What?!?! What is that? He sat down and started to tell me exactly what it was – an inflammatory, autoimmune disease triggered by a gene called HLA B27. Immediately, he prescribed an NSAID that would help and gave me a list of stretches and dos/don’ts to help manage. In a fog, I left his office and went home.

I started researching AS and found out what it was and what can happen. Apparently, a lot of the things that had already happened / started to happen were considered “complications”. Complications? Already? Why had I let myself be in pain for so long? I broke down and realized that my life is going to be completely different than I had imagined.

Even now, when I know what’s wrong, I still can’t bring myself to admit my weaknesses. It’s easy for me to say that my back is hurting or I’m sick, but I still don’t want to admit that I have a disease that will never go away and will get worse in time. I guess you could say that I’m still in denial.

I don’t like to be seen as weak, even when I can’t feed myself because my arms are locking up, feel like noodles, or they’re shaking so bad that food falls off the utensil. I force myself to stand straight but there’s still a small hump in my back. I can’t do much of anything for long periods of time. I cry from pain when I make myself do things with my family. I can’t let them down. I get sick at the drop of a dime becasue I love on my kids so much. I can barely clean the house but I do it anyway. I’m supposed to rest but there’s too much to be done. We are a single-imcome family with very little to spare and I don’t know if I’ll be able to go to work. I’m only 31….

I haven’t found a treatment that works so I’m living through my pain. Hopefully one day, they’ll find a cure. Until then, I must keep pushing on. I will continue to hide my pain because I don’t want to upset my children. They are so loving that when they know I’m hurting, they are sad. I can’t let them be sad.

This is my story. Don’t feel bad or sad for me. Feel happy for yourself and enjoy what you have. Please remember, just because I don’t “look sick”, doesn’t mean I’m not and even when I’m smiling, I’m still in pain.

Rowlett, Texas United States Of America

“Life is too short to wake up with regrets.
So love the people who treat you right.
 Love the ones who don’t just because you can.
Believe everything happens for a reason.
If you get a second chance, grab it with both hands. 
If it changes your life, let it.  Kiss slowly.  Forgive quickly. 
God never said life would be easy. 
He just promised it would be worth it.”
-Unknown

10 Responses to “A.S. Face 0010 : LeeAnn Fine”

  1. Thank you for sharing! I can fully relate. I was diagnosed at 26 on Aug. 30, 2011. I have three children age 7, 5, and 3. I know exactly what you are going through. I am scared and still awaiting blood test results and MRI is tomorrow! My RA doesn’t seem to be the God send I was hoping for, but we shall see. I will keep you and your family in my prayers.

  2. Dear LeeAnn,
    I feel as if I wrote your story. I understand all to well about denial and having to be strong for my loved ones, but it comes wth a high price. I learned I needed to be upfront and honest with my family and admit I was sick and there were things I wouldn’t be able to do but I would do my best. It turned out to be the best thing, because now there are no hard feelings when I am unable to do things with them. I once was my worst enemy. I never gave in, I refused to be “sick” and weak. I berated myself. I hated myself. Then one day on a AS Support forum I seen the words typed by Sean, “Happiness is forgiving your self for being human.” I said it over and over, and realized that the only way I was going to have a life that made me happy was that I had to become my own best friend. Never in my life would I treat someone the way I had treated myself. I would never make them ashamed for being sick but yet I was. So from that day forward I decided to treat myself as I treat my loved ones, with kindness, compassion, understanding and acceptance. When I did, my life changed. Remember from this day forward you are never alone.

  3. It makes me sad that you think that having AS is a weakness.Its not your fault.And your not weak.You need to be good to you first.Your children love you,and they will help you,and more importantly they will love you even more.

  4. Thanks LeeAnn for sharing this! I agree that one of the hardest things is, not to know the future… I wish I knew what it will be like, the past has been so hard. I have been 31 yrs old and just “staying” alive to do chores etc. even if that was all I did in a day,I thought it would help the one family income for me to keep up with the house and boys activities. Hang in there and like me hopefully you can have simple pleasures on the way – for yourself! Take care of you too, thanks again

    Valerie Noel Wulf said this on October 31, 2011 at 12:03 pm

  5. Dear LeeAnn, and Valerie,

    One of the things I find helpful for me, is to remember to be my own best friend. I would be understanding to a loved one who is sick and sympathetic to their problems. So I have learned to be as kind to myself as I would someone else. Best to you both.
    Sincerely Cookie

    Cookie Has AS said this on November 5, 2011 at 10:03 pm

  6. Hi LeeAnn. Thank you for being brave enough to step up and share your story. I do not have AS, but other chronic illnesses. I too was misdiagnosed, but even after a proper diagnosis, I did not accept that my condition was chronic. I even went through a total colectomy and never said the words, “I’m sick.” I am now learning to live and even thrive as a “Spoonie,” but it is definitely a process. I hope since you wrote this post that you too are better learning how to live this crazy chronic life. I really like what Cookie said about being your own best friend.

    Happy World AS Day! I hope you feel supported today and that research continues to advance for AS.

  7. I too am in TX. Only been here a little under three years so I am unfamiliar with Rowlett. Grew up in NY. Not the city, but upstate in Rochester. Thank you for your story….. I do pray somehow there are better answers for us one day, but am thankful to know what is going on. I appreciate your courage and outlook. Newly diagnosed, so it hasn’t sunk in yet how to feel …..

  8. LeeAnn, you are not “weak”, you have a debilitating disease! Give yourself a break! It’s NOT your fault! When I push myself too much I pay for it later by total exhaustion, excruciating pain, and depression! You CAN still do a lot of things just differently! I too live in TX near you in Tarrant County. We went to Six Flags but rented me a wheelchair so I didn’t have to walk. I’d be too exhausted walking the whole day! We live on one income too, so I know all about money being tight! Relax and stop pushing yourself. I make my disease worse by fighting it. Accept it. Decide what you are going to do now that you have this disease. There are ways of doing things, just not like before. Working thru the pain is not good for you! Being in pain effects your heart and blood pressure, which in turn effects your kidneys and other vital organs. I STRONGLY suggest you ask your Rheumatologist for “maintenance” medication and pain medication! Are you taking Remicade or Embrel or Sulfasalazine? NSAIDS are not enough for me to relieve pain, especially if i am having a flare (which I was when I was firstg diagnosed!).
    Peace to you and blessings! Susan

  9. Thank you for sharing your story. I can’t tell you how much I relate to it. I feel like you reached inside my head and pulled out my story. I’ve just recently been diagnosised with AS and am still trying to come to terms with it. After reading so many of these stories I don’t feel so alone. Thankyou and God Bless you.

  10. OMG! I just noticed all of these replies! I’m so sorry that I didn’t see them before. Thank you for all of the kind words.

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