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Colleen’s Story (Ankylosing Spondylitis)

Colleen's Story (Ankylosing Spondylitis)  I grew up in Vermont. In May 1985 I was 10 yrs old. It was the end of the school year. We had what was called field day. All the kids had to be outside and they had sports, activities, a bbq, and even a walk/run thru the woods. In the early 1980’s the high-schoolers thought it was fun to prank the elementry school with bomb threats. It happend so much it was crazy. Well, on this particular day, they brought our buses to us because we were outside. I sat down to wait for my bus and I noticed my right ankle was hurting me. I tried to get the teachers attention but she was busy trying to get the kids to their buses. Well, when I got home I told my mom. I’m the youngest of 4 kids. There are 9 years difference between me and my sister, 7 years between me and my brother, and 2 years between me and my sister. The oldest had faked a sprained ankle for attention. My mom thought I was faking too. She had my brother who was 16, almost 17, check my ankle and he did. He told her it was hurt. I grew up on a dairy farm. When my dad came in from chores, my parents went out and got me an Ace bandage. I wrapped and iced it all by myself. My parents watched me, waiting to catch me. If some of you remember, this is when high tops came out and they were for boys only and if a girl wanted a pair she had to get a boys pair. I had a pair. You could set your foot in it and it would look like nothing was wrong. My parents looked at me and said “we knew you were faking”. That has always hurt.

As I grew up I noticed the pain in my right ankle was growing with me. Now my knee started to bother me. In my 20’s I started having problems with my back. I had learned to take care of myself up to this point. I had an ice pack for my ankle and knee. I would switch back and forth. My back was different. I would get spasms that felt like someone had punched the air out of me. I would stop breathing briefly. I was scared and I decided to go to the doctor. At this time I was living in Florida. The Dr had injected me with penicillin. Oh, it felt so good. Some time passed and the pain was back. I went to the Dr and this time I didn’t get the shot. I got a paper with exercises and was told “here, do these and you will be ok”. I tried but I was getting worse. I stopped going to the Dr and took care of myself.

Thru the years I was tired all the time, oddly tired, but I brushed it aside as nothing. I also had problems with canker sores. In 2004 I was still in FL but planning on moving to TN. I was heading to work when I realized my eye was hurting real bad. The sun was killing me. I made an appointment with a new Dr – my Dr was on vacation – and I had to deal with a substitute. This Dr said I had pink eye and I knew there was no way but he wouldn’t listen. So I took the medicine. My eye turned bloody. I went back to that Dr. He freaked out and sent me to an eye surgeon as an emergency. I found out I had iritis. This is when your body thinks there is something wrong and it attacks itself. This is what the eye specialist told me. I had to go thru 6 months of eye drop therapy. He told me to keep an eye on this because I could get it again.

In 2005 we moved to TN. During the move, we had a medium size dog and he would lay in my lap. I noticed pain in my thigh that was strange but I brushed it off. In 2008 I had some problems with my eyes but it turned out to be nothing. At the end of the year I was bleeding from my behind. I had a colonoscopy. They found I had a hemorrhoid. I thought only women who had kids could get this. I have never had a child.

In March 2009 I started to not feel good. It was a Thursday at the end of the month. I started having diarrhea. I never had it before so I didn’t know that 5 and a half days was too long. I wasn’t eating too much because I just couldn’t eat. After 5 and a half days, I started having problems with my right leg again. As the days went buy I tried to take care of myself. I wasn’t eating. Slowly I was losing my ability to walk. The following Monday I told my husband to make a Dr’s appointment. We had just changed Drs and he had the # and I didn’t plus we had to work around his schedule and his job. The last time I weighed myself before being sick I weighed 112 pounds. Now, the last time I got on the scale I weighed 109. When I made the choice to go to the Dr I was unable to take a shower. It took me half an hour to get from the couch to the bathroom. It took an hour to get from one end to the other. The appointment was made for that Thursday, April 16th at 9 am. On Tuesday I thought I noticed something strange about my right foot but brushed it off. But Wednesday when my husband came home I asked him if my right foot was swollen. He looked and wanted to call 911 but I said no, we have an appointment in the morning. He got my ice pack and [I’m not kidding] within seconds of touching my foot the other one blew up. Well we went to the Dr and she said I waited too long and now she could not help me. She sent me to the ER. I had trouble getting in and out of the truck so she called the hospital and had someone waiting for me with a wheelchair. The hospital I went to is UT, a teaching hospital. It was around 9:30 am. I pleaded with the Dr not to make me get on the gurney but he said he couldn’t treat me unless I did. Two women who were training to be paramedics heard the conversation and told me they would help. One took my feet, the other my upper part. The one who took my upper part did the talking and told me I could claw her if I needed to. I did. First thing they did to me was take my rings off and gave them to my husband, then my clothes, and put a hospital gown on me, then they put a catheter in me. I went thru so many tests, x-rays, blood tests. During one test I was told because of my screaming and the pain I was in they had me in the trauma center. I spent hours in the hallway. My heartbeat was crazy. I had arrived around 9:30 am and they admitted me at 11 pm. This was my first time ever being admitted to a hospital. I was scared. I stayed for almost 6 days. The 6th day around 8:30-9pm I got to go home. While in the hospital they ran all sorts of tests. They hinted that they knew what I had but didn’t want to confirm yet. One problem I had was that my brain and right leg were not connecting. I had to have a nurse come in to teach my brain and leg to connect again. I had gotten on disability around this time. Because I had been the hospital they accepted but it wasn’t until December that I received any money. I had learned how to walk with a cane and I tried to walk without it. My rheumatologist had yelled/lectured me. I had to walk with a cane permanently so I wouldn’t do more damage. I think it was around August when they finally said “yes, you have AS”. I was told at one point that some of my pain is because the cartilage in my hip had deteriorated because of the 24 years that I didn’t have Dr care.

It has been 2 years since my diagnosis. I go to the rheumy every 3 months to take my blood and see how I’m doing. Now I’m having trouble giving blood. My veins are weaker and I bruise as they are taking my blood. In the last few weeks my back has been hurting me real bad. My next appointment is June 23. I plan to ask for x-rays and mri on my back, hip, and ankle. Because of one of the meds I was on, I now have acid reflex and sleep apnea. I’m still tired all the time.My husband is very supportive. I am unable to clean. I can only clean a counter then I get very sick. The Dr has told me I pushed myself too much. So my husband has to do more than his share. We both do the cooking. I had also gained more then 50 pounds from the meds. I have just recently started losing the weight. I have lost about 12 pounds in the last 2 months. I’m currently on: methrodrexdate, Humeria, Cymbalta, Sulfazine, folic acid, vitamin D3 and calcium citrate. I take the methrodrexdate on Friday before going to bed. I take Humeria every other Tuesday around 3. I have to inject this myself. I never thought I would ever do this but when faced without much of a choice I found you do what you have to. I will update after my next appointment May 28, 2011.

Submitted 5-26-11

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Elin

    Thank you for sharing your story with the community, Colleen! You’ve certainly been through a lot to get your diagnosis of spondylitis!! Wishing you continued improvement and please let us at SAA know if we can help in any way!

    All the best,

  2. Good Days

    Hi Colleen, thank you for sharing your story, I know it will help a lot of people in the same situation. I’m part of a great organization, Good Days from Chronic Disease Fund, that helps patients with problems just like these. Help support our cause, and together we can make a huge difference in yours and in so many lives.

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