My story
Hi there,
Although I am nervous about this, I want to share my story. What I have, how I got diagnosed, etcetera. It has been difficult for me to figure it out myself, and I find it even harder to put it into words. But, here goes nothing...
I am a 20 year old woman who has something called Undifferentiated Spondyloarthropathy (Yeah try saying that one five times fast). It is an autoimmune disease that, in my case, means my immune system is looking at my good tissues in my body, thinking they are bad foreign substances, and attacking them. It usually starts with severe back pain, specifically in the Sacroiliac joint (the part of the back where the spine and hips meet) and then moves on to other parts of the back as well as other organs. Often times, if the immune system attacks joints, bones will calcify, or grow, and sometimes fuse together. Spondylitis is three times more likely in men than it is in woman, but is first discovered in young adults. Like all autoimmune diseases, it is different per person, and there is no cure, just treatment to manage it.
So, how did I get diagnosed? Well, it wasn't easy. My first major flare (I say major because I had back/hip pain since I was in high school, but not as bad as this) was on my dad's birthday in August of 2013. I work as a hostess in a restaurant, which happens to be a place my dad likes to eat. We were having brunch and my manager came and asked me to return in the evening to cover a shift. It was a Sunday evening, a very slow and easy shift. I had made it most of the way through the three hour shift and started to have pain in what felt like my hip. Within minutes, I could barely walk. I told a co-worker that I was in a lot of pain, and I really needed to go home. Now, I am one to tolerate pain, and I was nearly in tears. This was the worst pain I had ever felt. My boyfriend picked me up and took me to my parent's house where I spent the night, just to be safe. For the next couple of weeks, I would try to make it though my shifts. Some days I was unable to walk, so I would call out. Other times, I would leave early. I was going to the doctor, and they were telling me it was nothing. That I was exaggerating. I had X-rays to check for fractures. Nothing would show up.
One day, I came to work and was fine for a bit, and then suddenly I was in tons of pain. All within minutes. And we were SLAMMED. It was so busy. So, I was limping around trying to keep up. My manager finally pulled me aside and asked why I was limping. She took one look at me and said that she was calling someone in. I told her that I could no longer walk. I somehow had gotten myself to the break room and was in tears. I felt like I was going to pass out or throw up from the pain. I called my boyfriend and my mom. I told my mom I needed to go the doctor. She came and picked me up and took me to urgent care and my boyfriend met me there. Sitting was unbearable, but walking was worse. The urgent care told me there was nothing wrong, gave me pills and sent me on my way.
I was unable to walk for over two weeks (let alone sleep because of the pain). In that time, I pushed for answers. I was sent from one doctor to the next. I was living on 20 minute intervals, using ice packs in rotation and taking the maximum dose of ibuprofen I could take trying to ease the pain every 4 hours. Every doctor said the same thing, there was nothing they could do, but they would send me to a different doctor to be sure. It was frustrating enough not knowing if I could get up in the morning and walk myself to the bathroom, let alone sit up on my own. But then doctors were telling me that there was nothing wrong, that I'm faking it. I was beginning to feel crazy. Maybe I just was a wimp when it came to pain. Maybe there really isn't anything going on. Finally, I was sent to a specialist who said I had a Sacroiliac joint disfunction (basically the joint isn't working the way it should, and they don't know why) and all I needed was some physical therapy. He mentioned something called "Ankylosing Spondylitis," only to quickly dismiss the idea. I followed his instructions and went to physical therapy appointments which lasted a whole fifteen minutes, and did absolutely nothing. Moving hurt and made it worse. I ended up going to the chiropractor as a last resort. Three appointments later and he eased the pain enough for me to make it through the day. In three days, my chiropractor did more for me than hundreds of dollars of specialist appointments did for over two months.
Although my chiropractor didn't get rid of pain, I was able to manage it enough to work again. For the next year, I lived on ibuprofen. Literally. I was taking it every day just to manage pain. My boyfriend then went through eye surgeries, so I did my best to ignore the pain and focus on him. I was administering his medicine and mine. Trying to keep track of who's turn it was for the pain meds. By November 2014, I was starting to give up on my ibuprofen. It worked some days, but for the most part didn't make a difference.
For my boyfriend and I, November through December was absolutely insane as it was, with his last eye surgery being the beginning of November and then birthdays and holidays and more birthdays. Then, my body decided to act up. Just before Christmas, my eye was starting to have pain any time I saw light, and it was getting red. I thought I got something in it from wrapping, so I put some liquid tears in and just left it. It wouldn't go away, and I finally decided to go to the doctor. She tells me its pink eye and wants to send me home. I have had pink eye. Many, many times have I had pink eye. This was different. My boyfriend is reassuring me its fine. I'm telling him that if this is, he can't be anywhere near me due to recovering from eye surgery. He needs to clean everything. After the freak out, the doctor comes back in and I ask her about Iritis. My mom has had it and I remember her telling me about it a little. To me it seemed more Iritis then just pink eye. She immediately refers me to specialist for that. I felt like I was on a roll, so I also ask her about this Ankylosing Spondylitis. She tells me that there is a blood test if I want. I told that I absolutely want that blood test because I need answers.
As it turned out I had Iritis. I was right. Not exactly something I wanted to be right about, but it was the key. A couple of weeks later, I had a check up for my eye and the doctor sat for a second and said, "You are really young, why do you have arthritis in your eye? Do you have any other pain?" I told him I did in my back. He immediately connected the dots. "Spondylitis?" he said. He looked at my blood work to find that I tested positive for HLA-B27 and told me to ask to see a Rheumatologist if they didn't refer me to one in the next couple of days. He also told me that I really needed to push for the right answers and not give up. Stuff is going weird in my body and I should know about it. I am so thankful for that doctor.
I got a call the next day and was referred to my Rheumatologist. On January 13, 2015 I had my appointment. He took one look at my charts and said "I know what it is." But he asked me what symptoms I had anyway and went through the routine of checking my body. He told me I had "textbook symptoms" for Undifferentiated Spondyloarthropathy. I was oddly happy. I know, I just got diagnosed with an autoimmune disease that I have to deal with for my whole life, and I was happy, I am crazy. But, honestly, it was so great to hear that what I was experiencing wasn't all in my head, and it had a name. He explained everything and answered all my questions and gave me papers as well as websites for research. I love researching stuff like this, and knowing all I can know, so I was so grateful that not only did he give me answers to my questions, but gave me places to go for more research about my questions. He gave me my options and told me that we are going at my pace. It was my turn to take control of what was going on, and he was letting me decide what to do. It was the first time I felt like I was making the choice. I told him about ibuprofen not working and I wanted to try something more. Which being as my disease was already attacking other parts of my body, including my eyes, he fully supported. He also ordered blood tests for me to have every six weeks to monitor how my body was doing.
My first option was a pill called sulfasalazine, which I discussed the possibility of being allergic to, given my previous allergy to sulfa medicines. We chose to try it anyway because my reaction before was not life threatening and because this would be the best option long term if it worked. I did end up allergic to it and chose to stop use of the medicine. Because my newest x-rays showed some calcification in my joints, where my bones are beginning to grow in compensation of my immune system eating at the tissue, I chose to look into the next step. And after researching and talking with loved ones, decided to begin the Anti-TNF infusion called Remicade on February 17, 2015.
So that's where I am at. I hate needles and am having to get used to them with all the blood work and infusions. But if needles mean that I can have control of my body, so be it. I am beginning to feel hopeful about having my life back. I have hope that I won't be in pain every second of every day, and I look forward to that. I have a name for what I have. I have doctors now who are helping, or trying to. I have Spondylitis. But most of all, I am strong, and that is not going to change.
Nikki De
Although I am nervous about this, I want to share my story. What I have, how I got diagnosed, etcetera. It has been difficult for me to figure it out myself, and I find it even harder to put it into words. But, here goes nothing...
I am a 20 year old woman who has something called Undifferentiated Spondyloarthropathy (Yeah try saying that one five times fast). It is an autoimmune disease that, in my case, means my immune system is looking at my good tissues in my body, thinking they are bad foreign substances, and attacking them. It usually starts with severe back pain, specifically in the Sacroiliac joint (the part of the back where the spine and hips meet) and then moves on to other parts of the back as well as other organs. Often times, if the immune system attacks joints, bones will calcify, or grow, and sometimes fuse together. Spondylitis is three times more likely in men than it is in woman, but is first discovered in young adults. Like all autoimmune diseases, it is different per person, and there is no cure, just treatment to manage it.
So, how did I get diagnosed? Well, it wasn't easy. My first major flare (I say major because I had back/hip pain since I was in high school, but not as bad as this) was on my dad's birthday in August of 2013. I work as a hostess in a restaurant, which happens to be a place my dad likes to eat. We were having brunch and my manager came and asked me to return in the evening to cover a shift. It was a Sunday evening, a very slow and easy shift. I had made it most of the way through the three hour shift and started to have pain in what felt like my hip. Within minutes, I could barely walk. I told a co-worker that I was in a lot of pain, and I really needed to go home. Now, I am one to tolerate pain, and I was nearly in tears. This was the worst pain I had ever felt. My boyfriend picked me up and took me to my parent's house where I spent the night, just to be safe. For the next couple of weeks, I would try to make it though my shifts. Some days I was unable to walk, so I would call out. Other times, I would leave early. I was going to the doctor, and they were telling me it was nothing. That I was exaggerating. I had X-rays to check for fractures. Nothing would show up.
One day, I came to work and was fine for a bit, and then suddenly I was in tons of pain. All within minutes. And we were SLAMMED. It was so busy. So, I was limping around trying to keep up. My manager finally pulled me aside and asked why I was limping. She took one look at me and said that she was calling someone in. I told her that I could no longer walk. I somehow had gotten myself to the break room and was in tears. I felt like I was going to pass out or throw up from the pain. I called my boyfriend and my mom. I told my mom I needed to go the doctor. She came and picked me up and took me to urgent care and my boyfriend met me there. Sitting was unbearable, but walking was worse. The urgent care told me there was nothing wrong, gave me pills and sent me on my way.
I was unable to walk for over two weeks (let alone sleep because of the pain). In that time, I pushed for answers. I was sent from one doctor to the next. I was living on 20 minute intervals, using ice packs in rotation and taking the maximum dose of ibuprofen I could take trying to ease the pain every 4 hours. Every doctor said the same thing, there was nothing they could do, but they would send me to a different doctor to be sure. It was frustrating enough not knowing if I could get up in the morning and walk myself to the bathroom, let alone sit up on my own. But then doctors were telling me that there was nothing wrong, that I'm faking it. I was beginning to feel crazy. Maybe I just was a wimp when it came to pain. Maybe there really isn't anything going on. Finally, I was sent to a specialist who said I had a Sacroiliac joint disfunction (basically the joint isn't working the way it should, and they don't know why) and all I needed was some physical therapy. He mentioned something called "Ankylosing Spondylitis," only to quickly dismiss the idea. I followed his instructions and went to physical therapy appointments which lasted a whole fifteen minutes, and did absolutely nothing. Moving hurt and made it worse. I ended up going to the chiropractor as a last resort. Three appointments later and he eased the pain enough for me to make it through the day. In three days, my chiropractor did more for me than hundreds of dollars of specialist appointments did for over two months.
Although my chiropractor didn't get rid of pain, I was able to manage it enough to work again. For the next year, I lived on ibuprofen. Literally. I was taking it every day just to manage pain. My boyfriend then went through eye surgeries, so I did my best to ignore the pain and focus on him. I was administering his medicine and mine. Trying to keep track of who's turn it was for the pain meds. By November 2014, I was starting to give up on my ibuprofen. It worked some days, but for the most part didn't make a difference.
For my boyfriend and I, November through December was absolutely insane as it was, with his last eye surgery being the beginning of November and then birthdays and holidays and more birthdays. Then, my body decided to act up. Just before Christmas, my eye was starting to have pain any time I saw light, and it was getting red. I thought I got something in it from wrapping, so I put some liquid tears in and just left it. It wouldn't go away, and I finally decided to go to the doctor. She tells me its pink eye and wants to send me home. I have had pink eye. Many, many times have I had pink eye. This was different. My boyfriend is reassuring me its fine. I'm telling him that if this is, he can't be anywhere near me due to recovering from eye surgery. He needs to clean everything. After the freak out, the doctor comes back in and I ask her about Iritis. My mom has had it and I remember her telling me about it a little. To me it seemed more Iritis then just pink eye. She immediately refers me to specialist for that. I felt like I was on a roll, so I also ask her about this Ankylosing Spondylitis. She tells me that there is a blood test if I want. I told that I absolutely want that blood test because I need answers.
As it turned out I had Iritis. I was right. Not exactly something I wanted to be right about, but it was the key. A couple of weeks later, I had a check up for my eye and the doctor sat for a second and said, "You are really young, why do you have arthritis in your eye? Do you have any other pain?" I told him I did in my back. He immediately connected the dots. "Spondylitis?" he said. He looked at my blood work to find that I tested positive for HLA-B27 and told me to ask to see a Rheumatologist if they didn't refer me to one in the next couple of days. He also told me that I really needed to push for the right answers and not give up. Stuff is going weird in my body and I should know about it. I am so thankful for that doctor.
I got a call the next day and was referred to my Rheumatologist. On January 13, 2015 I had my appointment. He took one look at my charts and said "I know what it is." But he asked me what symptoms I had anyway and went through the routine of checking my body. He told me I had "textbook symptoms" for Undifferentiated Spondyloarthropathy. I was oddly happy. I know, I just got diagnosed with an autoimmune disease that I have to deal with for my whole life, and I was happy, I am crazy. But, honestly, it was so great to hear that what I was experiencing wasn't all in my head, and it had a name. He explained everything and answered all my questions and gave me papers as well as websites for research. I love researching stuff like this, and knowing all I can know, so I was so grateful that not only did he give me answers to my questions, but gave me places to go for more research about my questions. He gave me my options and told me that we are going at my pace. It was my turn to take control of what was going on, and he was letting me decide what to do. It was the first time I felt like I was making the choice. I told him about ibuprofen not working and I wanted to try something more. Which being as my disease was already attacking other parts of my body, including my eyes, he fully supported. He also ordered blood tests for me to have every six weeks to monitor how my body was doing.
My first option was a pill called sulfasalazine, which I discussed the possibility of being allergic to, given my previous allergy to sulfa medicines. We chose to try it anyway because my reaction before was not life threatening and because this would be the best option long term if it worked. I did end up allergic to it and chose to stop use of the medicine. Because my newest x-rays showed some calcification in my joints, where my bones are beginning to grow in compensation of my immune system eating at the tissue, I chose to look into the next step. And after researching and talking with loved ones, decided to begin the Anti-TNF infusion called Remicade on February 17, 2015.
So that's where I am at. I hate needles and am having to get used to them with all the blood work and infusions. But if needles mean that I can have control of my body, so be it. I am beginning to feel hopeful about having my life back. I have hope that I won't be in pain every second of every day, and I look forward to that. I have a name for what I have. I have doctors now who are helping, or trying to. I have Spondylitis. But most of all, I am strong, and that is not going to change.
Nikki De
Interested in more reading material? Check out my book!
Wings by Nicole Harman is available now in both ebook and paperback format on both Amazon and Barnes&Noble.
Comments
Post a Comment