Let me tell you about this fun little chronic disease I have and will have for the rest of my life. I have an autoimmune disease called Ankylosing Spondylitis (AS) and it’s been a long journey getting to the point of being able to say, “this is what I have” and “I’m not crazy after all”. It sure feels good when you finally hear those words from a doctor. That may sound nuts but for anyone trying to figure out what is wrong, why they are in pain, why they don’t feel good EVER and are always tired, it’s music to your ears. It’s like hearing your favorite song on the radio! Once the song is over the next step is figuring out what exactly is this disease and what do I need to do.
My journey started over 8 years ago but as a child I had all sorts of stomach issues. I was on my first elimination diet at around 10 years old and was diagnosed with IBS. The more I learn IBS tends to be a secondary issue for those with autoimmune disease. Besides having stomach problems I was a pretty healthy kid. Starting in my mid 20’s is when things changed. I went through my first round of physical therapy in 2004 when a mysterious stiff neck would not go away after more than 3 months. I was told it was probably just a pulled muscle. I worked out like a crazy person back then so it made complete sense to me. Sure enough after 8 weeks or so of treatment I was feeling better. From what I remember I felt pretty good and kept up my active lifestyle with no problems.
At the end of the summer in 2005 the company I worked for merged with another and I was informed my job would be eliminated in March. Talk about the stressful start of 9 months looking for a job in my home city. At the time I worked in product development for an apparel company. Unfortunately, there were not many positions floating around my city in a similar field. I started interviewing out of state, which stressed me out even more. I did not want to leave my family and friends and I had just moved into a new home a year before. After working my hardest to find a job in my city I realized it just was not going to happen so I gave in and relocated. I was blessed and found an amazing job at a great company and was able to start 2 weeks after my last day at my old company. Talk about perfect timing!
Relocating turned out to be just fine after all and a great move from a career standpoint. I miss my family and friends but I believe things happen for a reason and you have to just go with the flow. It’s important for me to share this history because it was just a month after my move that everything really started. Mysterious neck popping, constant neck pain, wrist pain, elbow pain, shoulder pain and a few years later hip pain were just a few of my new symptoms. It is believed that an autoimmune disease is triggered by an environmental factor. I believe today that stress was mine. Even though I may have had early onset symptoms when I had that stiff neck I really think stress played a huge role because once things started in March of 2006 it was nonstop doctor visits and worrying which only stressed me out more. The list of doctor visits just kept piling up and not knowing why I was always in pain just made everything worse. I did not understand why no one knew what was wrong with me. I saw some of the best doctors available but still no answers.
The first doctor I saw was a spine specialist. One morning probably a week after I made my move as I tilted my head back in the shower and brought it forward it sort of locked up on me. I pushed it forward and felt this intense pop at the base of my head and beginning of my spine. Every time I tilted my head it would catch and then pop. It was constant! After an MRI the spine specialist diagnosed me with a degenerative / bulging disc. After a few months of PT the popping went away and I’m happy to say has not returned. Even though the popping went away every day I would get out of bed and feel like I slept funny on my neck. I had a stiff neck feeling for more than 3 years. Literally everyday my neck hurt! Then I started having some additional pain and symptoms. My sort of breakthrough came when my middle finger swelled up like crazy and turned purple after a Pilates reformer class one Saturday morning. After 2 weeks of swelling I saw my primary care physician and she explained it could be a connective tissue disorder. To be honest she freaked me out! I had never really heard of Rheumatoid Arthritis (RA), Lupus or any of those diseases. After a week waiting for results the nurse called and said you more than likely have RA and need to make an appointment with a rheumatologist. As soon as I got off the phone I looked it up and was scared to death! I waited a long 3 months to see the rheumatologist and after my exam and additional tests he said, “Ok, let’s talk about Lupus”. Lupus! I thought I had RA. Long story short he was not sure. He knew something was not right but I did not have enough physical symptoms to go one way or the other. He said just to watch things and follow up if additional issues arise. So I was back to the drawing board. Not that I wanted RA or Lupus I just wanted to finally know what was wrong.
I never had a swollen finger again but mystery pain just kept popping up. I can’t tell you how many times I went through months of PT. It helped but then something else would just pop up and I would have to go back. The PT office became my second home. For me Ankylosing Spondylitis showed itself in stages. It can present itself differently depending on the individual, so even though the medical books say it starts in the lower back and SI joints this may not always be the case. For me it started in my neck and made its way through all my smaller joints only getting to my hips and SI area much later. Right before being diagnosed in April of 2013 at the Mayo Clinic it had affected my SI joint long enough to show on an MRI. I also had one bout of iritis which occurred right after I saw a hip orthopedist and he asked if I had ever been tested for an autoimmune disease. I explained my history and he said I needed to revisit it again. His referral back to see my primary Dr. and the iritis finally caused my doctor to do a genetic marker test to see if I carried the HLA-27 gene. Sure enough the test came back positive and it was back to the rheumatologist. He was 99% sure I had AS but with no true arthritis showing on my x-rays could not give a 100% diagnosis so I went on not knowing for sure once again. He suggested Humira but there was no way I would touch it with a ten-foot pole especially without a solid diagnosis.
More than two years of ongoing pain and frustration went on. In that time I decided I would take matters into my own hands. I did have a 99% diagnosis after all. I started researching AS every second I had. I learned so much about the disease. It was scary I won’t lie but in my research I did find people who felt diet could really manage it. I have always been a pretty clean eater but was following more of a plant-based diet with more grains and beans. Upon finding the Kick AS website I found a study about removing starch from your diet. You can read all about it on their website. This was my start to taking matters into my own hands. By removing beans and grains out of my diet I saw huge improvements but this all changed when I found out I was pregnant. For the first 3 months I kept up my modified diet but my Dr. said I really needed to ensure I was getting a full balance of everything including grains and beans and other starches. So for the last 2 months of pregnancy I ate a healthy balanced diet. Some women go into remission during pregnancy but for me my symptoms were worse. I am not one of those women who enjoyed being pregnant. I was miserable and would cry in the middle of the night sitting on the couch in our living room because I was in so much pain. I also was restricted from working out my entire pregnancy due to some early concerns, which did not help me in any way. It was a blessing in disguise that I needed a C-section due to my baby being on the bigger side. I feel lucky because I did not have to put all the stresses of a natural childbirth on my hips and lower spine. I’m not saying a C-section was easy ladies because it was not! No matter how you bring a baby in this world it is hard, scary and painful! After my son was born I continued to feel awful and I knew I had to do something to get a confirmation on what I had once and for all.
My wonderful husband made a second attempt to contact Mayo Clinic. I had tried to get in when my doctor originally thought I had RA but the rheumatology department had no openings. Whatever my husband said to the Mayo this time around got me in! My appointment was great and sure enough within one day I had a full diagnosis! It sounds crazy to say this with happiness and excitement but it took 7 years for this confirmation and I went home feeling a bit scared but happy none the less. Once the excitement went away I realized the reality of having a chronic illness and that I would need to fight this thing for the rest of my life. Learning more about AS was a scary thing. I cried a lot and was terrified for what this meant for my future. Reading stories about people who have to rely on a wheel chair or cane, that it can affect your heart and that the spine can fuse and I may lose mobility scared me to death. I think it’s important to fully understand what a disease diagnosis means but I do think at some point you need to say, “Ok so what am I going to do about it”! My Mayo doctor of course prescribed Humira, which after a 2-month debate I finally took. I was the biggest baby let me tell you. Shots and needles don’t scare me but there is something so wrong about having to give yourself a shot in the leg in your own home. Your home is supposed to be your oasis right? My hubby was nice enough to do the injection and I will admit I cried like a big old baby. It hurt! Anyone on Humira or a similar drug knows what I am talking about. About 2 weeks later I came down with something. It was probably from a bug that my son brought home from daycare. I was the sickest I have ever been in my entire life for more than 3 weeks. I decided that I couldn’t live like this. Being sick was not better than being in pain. Not to mention the worry of the medications side effects could not leave my mind and I have always been against taking medicine if not absolutely necessary.
I went back to my modified diet and went 100% gluten free. I saw improvements but not to the point of feeling like I could forget once in a while that I even have this disease. Giving up all grains got me feeling even better and then when one of my best friends started a Paleo diet I thought it deserved another look. I always disregarded it because of the meat thing. I have never been a meat person for two reasons; one I didn’t like it as well as the moral standpoint. I realized I don’t have to eat meat hardcore to follow Paleo and I have learned that there is an array of benefits to consuming conscientiously raised meat. Once I started researching Paleo I found out about the Autoimmune Protocol (AIP), which is predominantly a Paleo diet with the elimination of certain other foods. After following AIP I could quickly feel a difference and have even found myself saying that I am practically pain free. What! Did I just say that! Yes I think I did!
I wish I would have found more personal stories out there that I could have related to and that would have helped me with a place to start or an earlier diagnosis. My hope is that this blog will do that for you but also be a fun place to find inspiration for living a whole lovely life!