Ankylosing Spondylitis, two words I had never heard, and only recently learned how to pronounce, but seem to be making life quite different.
What is AS? Ankylosing Spondylitis (AS) is an auto immune disease. The short version is it causes inflammation in your body. It mainly affects the spine and sacro-iliac (SI) joints, but can affect other parts of your body. Depending on where you read, it is more common in males. People usually get diagnosed somewhere between ages 17 and 45. Sleeping and being still make it worse, and usually with movement, the symptoms ease. Ultimately your spine can fuse together as your body destroys the cushion and bone grows in its place. Yes, ouch. It can make breathing difficult. Symptoms often present themselves atypically in women usually starting in the neck. Feel free to research more if you're interested in it. https://www.uptodate.com/contents/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics?topicRef=2018&source=see_link https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808 My AS Story A little over two years ago, I started experiencing a lot of stiffness in my neck, shoulders, and upper back. This had been something I had dealt with before. I would sit at my desk and grade papers or lesson plan, and the pain would begin, but it usually went away. At this point it wasn't going away. I specifically remember my husband coming home one day, and I looked at him and said, "I can't move." During this time period, I had a gift certificate for massage, so I figured this was the perfect time to use it. The therapist was astounded at the knots in my body. The massage provided some relief, so I went back a second time. This therapist expressed concern with inflammation in my body and recommended going to a doctor. Not knowing then what I know now, I went to a chiropractor. This helped temporarily, but I quickly took a turn for the worse. My chief complaint throughout this time was that sleep was impossible. It hurt so much to sleep. My husband and I had a Spring Break trip planned. I was quite miserable throughout and knew it was time to seek medical attention. At this point, I was experiencing numbness in my arms, total stiffness in my neck and shoulders, it hurt be stationary for long periods of time, and sleep was impossible. The orthopedic doctor expressed great concern with all of this happening at my age and sent for an MRI and blood work. The MRI was totally normal. The blood work was fine, other than I had a slightly elevated ANA. This was the first time I was told I was fine, but thankfully, he still had concerns and recommended going to my primary care physician to go over the blood work. I went to my PCP. When I walked in, he more or less asked why I was there. He said he had no concern with my ANA that I might come back in twenty years and have something rheumatological, but in the meantime I should try to get a new mattress. I went back to the orthopedic doctor. I said surely we missed something. There just has to be something broken, torn, out of place, or just something. He did another X-ray and MRI on a different part of my back. When we met for results, he apologized and said he couldn't find anything. And very thankfully, at that point, he said if your PCP won't send you to a rheumatologist, I am. The rheumatologist office called me six months later to set up an appointment, and I couldn't get an appointment for almost six more months. In that time of waiting, the pain became exponentially worse. I went back to my PCP and met with a different doctor in their practice. He said he didn't want to call it Fybromyalgia, but he wanted to treat it like it was. They prescribed a medicine I wasn't comfortable with, and I wasn't comfortable with the diagnosis to be honest. I knew my body was in a great deal of pain, but I just didn't think it was Fybromyalgia. At this point, I started to feel a little batty. Maybe I was making it up. Maybe I truly was fine, and this is just what getting older felt like. I didn't want something to be wrong, but I so desperately wanted answers and relief. I finally made it to the rheumatologist. I walked in and explained my symptoms. She said it might be Ankylosing Spondylitis, but she didn't think so. My husband and I left, and I had no idea what disease she had mentioned. She redrew my blood, and again everything was within normal ranges. A week or so later she messaged me on the message portal and explained I have the HLA-B27 gene which is linked with AS. I was ELATED. Finally, finally, I had an answer! I wasn't nuts. My back really did hurt, and soon I would be able to sleep. Unfortunately, she didn't give me any information than that, she prescribed a medication and told me to take it two months and if things didn't improve, we would move to Biologics. I began researching (if you can truly call the Internet research). The joy of the answer soon faded. These words that I didn't know how to pronounce and the medicines used to treat them were scary. When I found out how scary, I requested an appointment. That appointment ended quickly, and I left discouraged. I teach third grade. These medicines to her are like a reading test to me. She gives them all the time. It's what she does. To me though, this was my body. Having my liver tested and blood drawn because of the medicine I was on was scary. Finding out the potential dangers of pregnancy (no one mentioned) while on these medications. Terrifying. Learning that there really isn't a lot of research and even doctors aren't entirely sure how they work. Bewildering. They lower your immunity and people contract all kinds of diseases. Horrifying. I immediately started looking into natural options. Everyone has an opinion. Basically I could switch to a plant based diet to maintain symptoms, but from what I read, eventually your spine fuses together, and the pain you feel from the inflammation is nothing compared to that pain. I've talked with people who have lived through it. Some of them were diagnosed before there were many treatment options, and they all gave the resounding answer of if there is a treatment, do it. I've listened to podcasts of people who changed their whole life style through exercise and diet. I've read story after story where people had to give up their careers and more or less lives. I started taking the medicine the rheumo prescribed. It gave me incredible headaches, and honestly I was feeling worse. Along with end of the school year stress (I teach third grade) and all of the findings of this disease and the medicines, I sent my body into what they call a flare. I have experienced pain for years, but never have I ever experienced pain like this. I haven't slept well in years, but during this time I literally didn't sleep. There was no comfortable position. If your still, the pain is worse, but it hurts too much to move. Stress and not sleeping (all because of cortisol) amplify the pain. There were morning when I woke up and I wasn't sure if I was going to be able to move. My legs wouldn't work. I would wake up in the early hours of the day and walk laps in our house. We brought in our front porch rocking chair to see if I could sleep in it. I couldn't wash my hair because it hurt. After many nights of no sleep I became so exhausted, I felt like I wasn't functioning. Crying, I crawled in bed with my husband and asked him to just hold me, I felt like I was floating, and I told God if He wanted to go ahead and take me home, that was fine. I've never in my life, ever, experienced pain to that degree nonstop with no relief. It was life changing. Gratitude Life is very different after those weeks. Each morning when I wake up, no matter the time, I take a second and thank God for sleep. Any moment I go without pain, I thank God for that moment. I'm learning to slow down. I'm very task oriented and very relationship minded (which is how this post came to be). I'm a chronic worrier. It's a flaw, and Jesus and I talk about it a lot. Worry is not good for anyone, but for someone with AS, it's horrible. The release of cortisol is detrimental. People would ask if I was ok, or say I didn't seem like myself. I wanted to explain that they were right, I wasn't myself. It was very hard to be cheery, or well even upright (or lying down for that matter- everything hurt), during that time. It was hard to make decisions. The brain fog was real. I once went to the refrigerator and ended up at the garbage can. Pain can be debilitating. On the inside I felt horribly that I wasn't myself. I felt bad that I wasn't on top of my game. The guilt of not being present in a thoughtful way was killing me on the inside, but I was just surviving. I couldn't push myself to do any more fun activities as we ended the school year, and I wanted so much to make the best memories as we finished, but I couldn't. I wanted to get ahead and start looking at plans for next year, but my mind wasn't there. I wanted to clean my house floor to ceiling, but I was doing good to brush my hair. I am so thankful for any moment that I can be fully emotionally, mentally, and physically present. I am so thankful for my husband who literally carried me through that time. I am so thankful for the people who surrounded me, checked in, lifted me in prayer, and did everything in their power to help. I'm thankful for the days washing my hair isn't hard. I'm thankful for the days I can clean. I'm thankful that the flare didn't happen until near the end of the school year. I'm also thankful for those who gave me reminders about listening to my body. I'm just grateful. Last Week to Today Today has been a good day, praise God. I've started yoga. I'm changing my diet (no gluten, dairy, and minimal processed sugar). I slept for eight hours last night. I've implemented a bed time routine. My so precious husband has been so patient, encouraging, and helpful through it all. Last week, I was ready to throw in the towel, and he let me soak in that pity party all the while praying for and encouraging me along the way. Last week I grieved the loss of my life, and God reminded me that He gave His for mine, and He has a grander plan. His ways are higher than mine, and when I became His child, I surrendered my life to Him, although I often try to take it into my hands- which never ends well. Last week I grieved the thought of not having children. Meds are scary, and so is the pain. I grieved giving up the foods I love. I grieved not being able to sit in a car for long periods of time/travel. Then I became fearful. I was so fearful of the pain. I was scared to eat because what if I ate something that set it off. I was scared to sleep because it hurts to sleep. I was scared to exist because what if something stressful happens, and I hurt again. I was scared to take or to not take the medicine. What if the side effects hurt me? What if my spine fuses together? God reigned me in again and reminded me that fear and confusion are not from Him, but they are straight from the enemy. Why Did I Write This? I really do worry (I'm working on it) about not being myself, being present, being thoughtful, etc. I don't ever want to come off rude or uncaring. So if you're someone who is a part of my life, search for the Spoon Theory. I'll try to be honest about how many spoons I have left. And in moments where I'm "not myself", know that I still love you deeply. God has given me some nuggets through His Word lately, and one came to me today. One of my very favorite verses is Psalm 16:11 "Thou wilt shew me the path of life: in Thy presence is fullness of joy; at Thy right hand there are pleasures evermore. I was scrolling through Instagram, and Lisa Robertson with Proverbs 31 Ministries made a post about this verse. Her three points were 1) "God has a path for my life," 2) "When I'm in His presence, fullness of joy is His gift- not necessarily happiness, but joy knowing God is always there." 3) "His pleasures are forever; He welcomes us to be close to Him within reach not just for a day but forever." This life isn't always easy. Pain whether it be emotional or physical happen because of the existence of sin on earth. God created a perfect world, but sin entered in, and when it did, His perfect world changed. And although it changed, He still made a way for each of us to have a relationship with Him. As far as I know, I've only had that one flare, and it was just torturous, and I don't say that dramatically. I mean it. It was horrendous. God gave me so many wonderful people to rely on during that time, but there is no possible way I could have withstood it, had it not been for Him. There's no way. If you're reading this, and you don't have a personal relationship with Jesus, I would love to share about His love and His big, strong arms that carried me through many trying times in my life. Even if you're not living with AS, it might be a broken marriage, the loss of a loved one, cancer, a migraine, you name it, I would love to pray for you. If you suffer from AS, I would love to hear your story. Most people I've been in contact with or stories I've heard and listened to, are similar to mine. Many people get told they're fine for years before finding an answer. I'm not promoting getting diagnoses for people who aren't ill, please don't hear that, but for years I hurt and was so desperate for relief. And I do praise God that I found out before my spine fused. Some people don't know until then, and it's too late. From what I've read, AS is actually pretty common, but so few people know about it. If that's God's will for me is to bring awareness to it, and through that bring people to Him, I am so willing. Feel free to share this to bring awareness to Ankylosing Spondylitis, and if you know someone who is living with it, I encourage you to encourage them.
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