A.S. Face 0791: Kristin Kinsley
My name is Kristin Kinsley and I have Ankylosing Spondylitis.
My story starts 8 years ago, when I was 18 I started getting severe lower back pain. It would come and go so I didn’t think anything of it and continued to live a normal life. At 19 I joined the U.S. Navy and that’s when the pain started to take on a life of its own. At first I thought that the pain was related to the new exercise routine that I was on because prior to the Navy I wasn’t very active. I thought maybe I ran too hard or was lifting too heavy so I just brushed it off as normal.
But after a year of ups and downs with the pain I started to get worried that this wasn’t something that I was doing to myself. I went to see my primary care doctor and he told me that I just wasn’t hydrating enough. (those of you that have been in the Navy know this is their answer for everything)
So life went on. Then I started to notice that the pain was more prevalent when I was standing for long periods of time, or when I was sitting in the same position for extended periods. I remember specifically telling my mother at one point that it was like my spine was being glued together while I was standing and that I had to actually pull it apart in order to move to a different position or end over. (Unaware at the time that this in fact was really happening to me) Several doctors and ER visits came and went, I was either dehydrated, I pulled a muscle or there was nothing wrong. Occasionally one of the docs would send me home with a temporary batch of Vicodin to ease the pain for a few days. At some point in this time frame one of the docs sent me to get an x-ray just to “make sure” that he was right and nothing was wrong, and sure enough he couldn’t find anything on my x-ray indicating that there was a problem.
In 2009 I got stationed in Guam. I was 22 and in paradise! A year later I got pregnant with my only child. September 21st 2010 the most gorgeous baby girl was born. I named her Haven. I remember not feeling any pain in my back during my pregnancy (but I was in pain every where else ha) After having Haven my back pain started to bother me again. I went to go see the new primary care doctor and explained to him my history. He took a brief look at me and sent me home with 5 Percocet. Several times over the next year or so I kept going back to him, explaining to him the excruciating pain. Every time it was the same answer, here’s some Tylenol or ibuprofen. He never once even looked at my back, not once!
Finally one day after he sent me home again I was so livid I went straight from the appointment with him to the Emergency Room. The doctor that saw me there did the same thing, didn’t even look at my back and sent me home with “prescription strength ibuprofen” I was infuriated at this point. I went up to the TriCare admin office and demanded that I would be able to see a doctor that was actually going to look at me. She said that she could switch my primary care to one that worked there at the hospital and that I could see him in an hour.
Finally I saw a man that would listen to me. I must have spent 45 mins explaining to him all the symptoms and the pain. He thoroughly examined me and decided that he wanted to get an MRI. A few weeks later the results were back and what was explained to me was that there was a narrowing of my spinal canal, and that there was a bone bulge in the same area of the narrowing and that was what was causing all of my pain. (I had to go see my First primary care doc at some point after all this and he straight looked me in the eyes and told me “i would have never given you and MRI because you are just a waste of the Navy’s money!”…. Real nice huh?) However, I was ecstatic to finally have some solid proof that I wasn’t just crazy, I went about my life. I was told to take ibuprofen as needed with pain. (By the way, this was like ALL the time, so I basically was self medicating with ibuprofen for the next couple of years.) Shortly after this diagnosis, I got iritis. This was by far the worst eye pain I have ever felt! I thought my eye was going to melt out of my head! It was excruciating, but a few weeks later after high dose steroids it was treated.
In May of 2012 I finished my enlistment in the Navy and moved with my husband to Virginia. The pain was continuous, worse on somedays and bearable on others. But I thought I had my answer. I would talk to my mother a lot about it, telling her it felt like I was being propped up on a scarecrow stick, and that I had to force my way to be able to bend over. She became very ill and the doctors were frantic to find out was what causing her to loose weight for no reason and be in a constant state of feeling like she was going to throw up. One of her doctors did an autoimmune disease panel (ANA panel) on her. He found the HLA-B27 antigen in her blood and proceeded to ask her if she had any trouble with her joints and her spine in particular. She fortunately does not have any joint pain, but it did make her think of me. She asked her doctor a few questions and then went home to call me.
The first time that I would hear the words Ankylosing Spondylitis would be from my mother. She told me that the HLA-B27 was hereditary and that I should go get tested, she thought I might have AS. I went online and did some research and all the symptoms I was like yep got that, yes I have that, OMG this is what I have!
I called to make an appointment with yet another primary care doctor. She thought I was out of my mind, she told me it was just too rare. She did go ahead and order the blood tests though. Few weeks later, I was HLA-B27 positive and sent on my way to a rheumatologist.
January 25th 2013 I would finally be diagnosed with AS by a doctor. After almost 9 years of terrible pain and no answers. I wasn’t crazy, none of this was in my head, this was real and this was happening to me. (By the way, with out the MRI that my first doc felt was a waste of money, I wouldn’t have gotten my diagnosis so quickly) I was broken hearted to hear that there is no cure, only ways to make it more “comfortable” (I hope someday there will be a cure!!!) I was put on ibuprofen at first 800mg 4x a day, but much like I thought, this didn’t help (remember I had been taking ibuprofen on my own for years and I never really helped, otherwise I wouldn’t have pushed the issue I don’t think) then I was put on Celebrex, but that was even worse than the ibuprofen. Now I’m taking Voltaren, which doesn’t help at all either. My doc wants to put me on Humira, but I have yet to come to the conclusion of whether or not I want to take it due to the cancer risk.
All I can say about all of this, is you must be your own advocate! If you don’t keep trying to find the answer, no one will! If you know something’s wrong, keep fighting till you get the answer you want to hear!
The most frustrating part of all this is that it’s invisible to everyone else. People look at me like I’m lazy when I say I can’t do something, or when I feel like I need to sleep NOW! I promise you I am not lazy, I am stubborn and I want to do everything on my own, I HATE asking for help! The battle with fatigue will be never ending and I just on a daily basis fight that and the pain. I am currently going to school for nursing, and I promise myself and everyone else that I will be a nurse that LISTENS to her patients, looks at what is hurting, and NEVER tell any one of them that they are a waste of money, time, or that they are making it up!
I have AS but AS does not have me!
Thank you, faces of AS to constantly remind me that we are not alone and that we are strong!!!!!!!
Virginia, United States of America