A.S. Face 0251: 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.
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
Hi Kelly!!
I love your “You know you are a face of AS when….” and your attitude. Thank you for sharing your story. You write beautifully, by the way. 🙂
((hugs))
Marti
(face 199)
To my daughter, friend, mother of my grandchild and confidante. Beautifully written hun :)….I have to say u have many talents and writing is definitely one of them. Very proud of u and ur accomplishmentso while deaaling with AS. Keep ur head up and always look ahead, and with the lord on our side
Lord on our side we will make it thru this life with AS just fine.
Kelly-Thanks for sharing your story. You desc ribed an AS patients life pretty acurrately. You are blessed to have a mom who shares your story. Keep counting your blessingss.
Well said! You are a brave girl! Most times I feel as you do, prepared for my future, but once in a while it kicks my ass, and there is nothing to blame or do about it. I really appreciate you story. My mom passes away who had this disease almost 2 years ago, I miss her so and am great full to have had the chance to know her and to make her understand that she is not to feel guilty. She was my best friend. Bravo!!! Stand tal!!
GREAT story and one shared by all of us!!Gentle hugs,brave lady…glad to meet you<3 ❤
thanks for sharing your story. Your mom is a blessing to you as I know you are to her. Love your attitude. I say ‘I have AS, but it doesn’t have me.”
Elizabeth face 40
I love your list and your attitude. I can relate to not wanting your mom to feel guilty. I was diagnosed in 2010 and my dad has it too.
Kelly,
I write to you as I wipe my tear filled eyes….with both sorrow and joy, because knowing there is finally some awareness which has launched for this disease, I feel “safe”.
I am 45, diagnosed with AS in 2006 – symptoms since very early childhood. I will dedicate the rest of my life to helping others so that they will NOT have to go through what I have lived through. My story is long and sad, yet joyous as well – as I sit here this very day today writing. Truly I believe I need to connect with “the warriors”, because I am a fighter and survivor through too much to mention, that most would not believe.
I live in chronic pain every day as well, but I am here, and want to help in any way in which I can.
Blessing to you….
Candyce Sindelir
Dear Candyce,
I am sitting here at my kitchen table stuffing wristbands in envelopes getting ready to mail the next bunch, adn I hear you got mail. I see that is a comment that I need to approve on the Faces Site and it is yours.. My eyes filled with tears and my heart with joy as I read your response.. It reminds me why, as I sit at this table quietly wondering is it really worth it all… yes it is… my emails and my heart tells me so.. I look forward to the day that I will include your story
Blessings Cookie
Thank you everyone! I wish I could have responded sooner but my family and I have been moving…to a new home right across from my mom. Thank you for the heartfelt wishes and concerns! Xoxo Kelly.
#23! It gets to be so much sometimes…Ahhh to have someone to relate to …I love this site and all the people in it…Finally someone understands …425 to be exact 🙂 Hugs from face 424