Kelly Niesen

You know you are a face of AS when:

1.You cannot touch your toes, even with your knees bent.

2. You have morning, lunch and evening sickness, but you are definately not pregnant.

3. You rarely take things for granted, because it hurts too much to waste a moment, no matter how small.

4. You know all the medications you take by heart, and are even able to correct the pharmacist from time to time, who happens to know you by face and name.

5. You hate to wake up in the morning because it feels like 6 semis ran u over that were hauling elephants.

6. Your children see you wincing while you fold laundry and automatically comes over to rub your back to make it stop hurting.

7. No one around you really “gets it” and you often give up trying to get them to listen.

8. You get very, very angry when someone tells you they have arthritis too.

9 You get even angrier when someone tells you that you dont look sick. Or when they say you can’t blame your disease!!!!

10. You get down right upset when those you love dont ever ask how you are.

11. No one can say your illnesses name, spell it, or even pronounce it.

12. You find yourself walking into a room and then completely forgetting why you came in there in the first place.

13. Your idea of a great night is taking a long hot (almost boiling) bath taking a few pain killers, and still not being able to sleep for fear or waking in pain

14. You walk like a penguin (or like you are nine months pregnant).

15. You eat pills for breakfast, lunch, and dinner, and on some days you are a human pin cushion.

16. Your close friends know that when they make plans with you that there is at least a 50/50 chance that those plans will be canceled, and they understand too.

17. You find yourself bouncing off the walls with restless energy while eating everything in sight because of the prednisone your dr prescribed, then crashing because of the muscle relaxers

18. You see more than 5 different drs and specialists, every single month.

19. You question why all the time but continue to come up with an adequate answer.

20. You could sleep for three days straight, and still wake up feeling exhausted, so you take a nap after only being up for an hour.

21. Your boss says that you cannot blame your shitty attendance, having to leave early, crying at odd hours, etc on your disease….

22. Your little boy asks every morning if mommys owies are gone?

23. You cry at least 4 times a week just because you are tired of everything.

24. You want to crawl in a hole…one lined with feathers and cloud puffs because that soil would definitley kill your back.

25. (in my case) You are lucky enough to have a mom with the same disease so she truely understands what you are going through, and try and convince her that just because its hereditary not to blame herself.

26. You are lucky enough to have a few chosen friends  that have seen you at your worst and do everything they can to help you get rid of the pain!

27. You dream of the day that you go to work, and bust your ass, and not get asked when you are getting to the next thing, just because you took a break cuz of the pain.

28. When you hope someone will realize that having this disease and doing what you do, means you have EXCELLENT time management.

29. You pray each day that your child doesnt inherit the AS disease..and you watch their movements to make sure it hasnt already been aquired.

30. You are hopeful that soon people will understand….and not act like its no big deal.

31. Taking 12 10 mg vicodin a day is not for a buzz, its so I can move.

My Name is Kelly, I am a 24 year old female, from Sioux Falls, South Dakota, and I don’t have, I live with, AS. My mom who is in her 50’s also has the disease. I was diagnosed 2 years ago….luckily enough my mother did the waiting in diagnosis long enough that once the disease struck me, her doctor didnt hesitate to diagnose me. In the last 2 years I have tried more than 20 different pills and injections, and have ingested over 3,000 pills to make my life a functional one with this pain. My AS was triggered by 3 different epidurals that I received while I was in labor with my one and only son, at least that’s what I have been told. I am lucky enough to have a doctor now who does not question the amount of pain killers I take and who is willing to try anything I suggest to help me alleviate the pain, the fatigue, and the discomfort (mental and physical) associate with AS. I have been told over 20 times that I do not look sick, and that I cannot blame my disease for different aspects of my life. To that I either laugh in the persons face, or just walk away. Sometimes facing a person that thinks they understand more about your life than you do, is just not worth the time or the effort.
I am extremely lucky to, as I stated, have a mom that has the same disease. I am lucky because she is one person in my life that knows EXACTLY what I am going through, althought she on the other hand is not so lucky, because she blames herself for me inheriting it. I don’t blame her, I blame the scientists that are busy trying to find “better” cures for different diseases instead of one “sufficent” one for AS. I know this may be selfish, but I feel I am entitled to a little bit of selfishness here and there for as much as I (and the other AS’ers) have to deal with on a day-to-day basis.
I have only had this disease for a few years, well as we all know, I have had it my whole life, but actively for a few years. And another part of the luck I have is a guy who has stood by me, fought doctors and pharmacists for me, and has never questioned the pain, fatigue, and depression. I am lucky to have found my love at the age of 15 but even luckier that he did not run for the hills when he and I discovered this reality after 6 years into our relationship. For this I am extremely greatful. Other than supporting and believing in me, he has taken over the dishes, cooking, vacumming, and laundry (just a few of the things he has taken over) for me…who else has a man like that in their life? Im sure some do, but many others, do not.
This is the beginning of my life with AS, and is only a portion of what I plan to face over the next years of my existence. I just want everyone out there to know, that this is a disease that tries to bring you down, that attempts to hault your every success, and will at every turn, throw another negative curve at you….I also find that many people suffering from AS only look at the negative aspects, for me I have found that looking at the positive parts of life has been hightened by my AS. I do not look at everyday as just another day anymore, I find that each day is a blessing! I used to find that mediocre chores were something that I did not find joy in, but the days I can get them done, are the most joyous of all! I also find that the days I can play with my son, throw a ball for him, chase him around, wrestle, are days that I cherish, where as if I did not have this disease, I would have overlooked that.
I want to thank my support system, who are filled with the people I see daily, weekly, and will never see (over the ASAP site) for believing, honoring, and cherishing me and all I do.
But I also want to thank my disease, AS; without you, I would not cherish daily existences, and I would not love my family or myself as much as I do. I also want to thank you for instilling in me the strength I never knew I had, to bring myself out of bed every single day and go on, I would never have known how strong I am without you intruding in on my life. So with that, Thank you to my family and friends…but also to AS.
Kelly Niesen
South Dakota United States of America
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One Response to “Kelly Niesen”

  1. Dear Kelly,
    Thank you so much for sharing your story with us. I love your You know you are a face of AS when…. I am sure in many ways it is comforting that your mother and you share the same illness, but as a mother I can see her heartache and guilt, that is what mom’s do. I love your attitude about trying to only see the blessings in life, that is the way I try to live and has helped me deal with a lot. Best of luck.
    Sincerely Cookie

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