Now You Know

 " Now You Know"

April and May are now the Ankylosing Spondylitis Awareness Months.

We are supposed to share different information about Ankylosing Spondylitis every day but this year I decided to share 61 things about Ankylosing Spondylitis and ME.

1: It took almost 32 years for me to finally have a doctor “believe” me and diagnose me. By then I could not move my head or bend it. My spine was almost completely fused and that is BEFORE diagnosis.

2: I have only gone barefooted once or twice since 1981 due to the unbearable pain in my feet. Get out of the tub into shoes, out of bed into shoes. I mean NEVER except to stand in the shower.

3: It was almost a year before I ever told ANYONE about my diagnosis.

4: I can’t cross my legs when sitting down.

5: I have so much bone growth in my neck that it’s slowing choking me to death and my cervical fusion plate is encased in bone.

6: Most of the people didn’t start asking questions about my disease until after I created the Faces of Ankylosing Spondylitis.

7: The pain and depression became so overwhelming that I tried to commit suicide. Twice.

8: 80% of the time when I post positive messages in the community it is because I needed someone to say that to me. I need to hear it.

9: I don’t remember the last time friends or family asked me about me anything about Ankylosing Spondylitis.

10: I personally don’t believe Ankylosing Spondylitis is an invisible disease, I believe it is a “refuse to see” disease and because it is hard to say and spell.

11: I got stuck in a car once in a parking garage for about 20 minutes because I accidently hit the forward button on the seat and could not bend enough to reach the button to move the seat back.

12: I have used some sort of sleep aid every night since 2003, not because I have trouble sleeping but because it is too painful to lay down.

13: Most of the time I will fall over like a bowling pin if you bump into me.

14: I keep a walker and grabber in my trunk for emergencies.

15: I try to not to be negative about my disease, but it is hard not to.

16: I struggled with the spelling of Ankylosing Spondylitis when I first created Faces of AS.

17: I have typed Ankylosing Spondylitis SO MUCH on my computer it recognizes the words and does not do auto correct.

18: I fell in 2019 and hit the ground so hard that I had crack lines in my skull and a traumatic brain injury. I looked like I had been in a bar fight.

19: If I raise my arms up well when I could, my face will turn red, and I begin to pass out. It chokes me.

 

20: I was once labeled publicly a fear monger by the AS community because I posted about a woman who had Ankylosing Spondylitis and was under hospice care.

 

21: I was once labeled publicly a sexual predator by the AS community because I was observed discussing the difficulties of AS and sex honestly.

 

22: I got to meet Dan and Mac Reynolds from the Imagine Dragons.

 

23: I used to send out Ankylosing Spondylitis awareness T shirts to people in the AS community.

 

24: I used to set up AS luncheons for the people in my area.

 

25: I have sent the police to do wellness checks on some of the people in the AS community.

 

26: I must chew my food till it is like mush in order to swallow it.

 

27: I almost drowned in my tub once, I was trying to reach for the plug. I had myself braced and my hand slipped, I cannot bend and could not lift myself enough to get my head out of the water. My husband heard the racket and got to be a hero. 

 

28: I am losing what little hearing I have due to the bones fusing in my inner ear.

 

29: I started a blog called My Garden of Gratitude; it helped me to cope by finding something to be grateful for every day.

 

30: I have been to the Spondylitis Association of America in California.

 

31: When I created Faces of AS I did not even think to add my own story until someone asked me when I was going to.

 

32: My jaw is fusing and making it impossible for me to open wide for the dentist.

 

33: I have lost almost all my teeth because Ankylosing Spondylitis is making the bone so brittle that they crumble.

 

34: I cannot take a deep breath because my ribs are fused.

 

35: I am totally fused from the base of my skull to my tailbone.

 

36: I cannot move my head up or down, or side to side.

 

37: I cannot bend, I am as stiff as a board.

 

38: I lean to the right due to Scoliosis and I am bent forward due to Kyphosis.

 

39: I must use a grabber to get clothes out of the washing machine.

 

40: I once thought of getting a tattoo of bolts on the side of my neck like Frankenstein.

 

41: I was once labeled publicly a scam artist by the AS community because I was asking the "faces" for their addresses so I could mail them Faces of AS bands.

 

42: I cannot finish a glass of anything unless I use a straw. I cannot tilt my head back or move it.

 

42: I did not put on my Faces of AS band until someone had theirs so I would be "physically" connected to them.

 

43: I have worn my band every single day since March 3, 2012, currently that is 11 years plus.

 

44: I think of Stuart every single time I type Ankylosing Spondylitis.

 

45: I spoke with Stuart's mother.

 

46: The idea for Faces of AS came about from a world war over a post I had made thanking our advocates and Sara.

 

47: I had no idea how to blog until Kelly showed me how. She helped me figure out how to do the Faces of AS website.

 

48: I wanted to do something as beautiful as the Scar project for the AS community.

 

49: I am waiting for the day Faces of AS is completed so I can do "my" awareness project. I feel like I am only a copy and paste master.

 

50: It was Jenna's Apple Art A Day Project in 2010 that gave me the courage and determination to be able to do the Faces of AS.

 

51: I was the first person in the AS community to get to visit with Stiffanie of the Spondy Trio created by Michael Smith.

 

52: I took Remicade treatments every 5 week for 13 years.

 

53: I have the Spondylitis Association of America Faces of AS banner.

 

54: My head and shoulders do not touch the floor when I lay down. I am about 8 inches off the floor.

 

55: I have a rescue dog named Peter who has the canine version of Ankylosing Spondylitis.

 

56: I miss the little things I used to be able to do like painting my toenails.

 

57: I remind myself to remember my best is my best and all our best looks differently. 

 

58: I remind myself to remember to forgive myself for being human. That one quote changed my life for the better.

 

59: I am honestly grateful for Ankylosing Spondylitis because of all the wonderful people I get to call family.

 

60: I have been on television before.

 

61: I often wonder if I would be the same person if I did not have Ankylosing Spondylitis.