Hi, my name is Suzann Geisler and I have AS. I am 49 years old now (July 2013). I was diagnosed in September 2012.
First, it is important to me to say thank you to Cookie and recognize the great work she has done putting this site together. I have read the first 543 stories and plan to read every single one of them! I thought I should write my story before the site was full.
Next, I want to point out that I have been active, healthy, and fairly athletic all my life. I was on the track team in middle school and rowed crew in high school. I have always enjoyed skiing, hiking, biking, and camping. I love being outdoors! Also, I am not a whiner. I gave birth to 2 children with no painkillers and no whining. All of the physical issues I will mention here are the things that, when I look back, could all be attributed to or associated with Ankylosing Spondylitis and/or other auto-immune issues.
When I was a teenager, I had some jaw problems that were not bad enough to complain about – some popping, stiffness, locking up, but they went away after a while. In college I had some heart problems, went to a cardiologist and was diagnosed with AV Node Re-entry, a conduction issue. My first daughter (pictured above with me) was born when I was 26 with no problems or complications. Soon after that I was getting my Masters degree and working full time in a daycare setting. I began experiencing back pain and neck stiffness. Going to a chiropractor, getting massages, and doing yoga usually helped and the pain was not too bad. The doctor said my pain was probably due to bending over and picking up babies and toddlers all day long. He noticed that I had kyphosis (shoulder slump) and an unlevel pelvis. But I was young and healthy and active so I thought nothing of it.
A few years later, I was teaching kindergarten and did a forward roll with the kids. I experienced such horrible back pain during and after the roll that I had trouble walking. I had to take pain killers and stay home from work the next day! When I was 31 years old, after a spring ski trip, I experienced severe pain in my tailbone/sacrum area. I had terrible pain when sitting. For many years after that I was a regular visitor to the chiropractor, and tried (painfully) to have my tailbone adjusted with no success. I sat on a “doughnut” pillow for probably 15 years.
When I was 37, I married my second husband and a few months later my hair started falling out in clumps. The doctor said it was Alopecia Areata, an auto-immune condition. Soon after that, while pregnant with my second daughter, I was bending over to feed the dogs and suddenly experienced a SEVERE burning pain in my lumbar spine. The doctor thought I had bulged or ruptured a disc, but she couldn’t take any x-rays or give me any prescription pain meds because I was pregnant. Any time I tried to sit up, the pain was so bad I would throw up. So I spent the next 4 weeks laying on the couch. I had morning sickness and had to empty my bladder often, but when I tried to get up and walk to the bathroom, it would take too long and be too painful. I literally could not put one foot in front of the other. My feet shuffled about 2-3 inches at a time. I would start to sweat and shake from the effort and the pain. Soon, I just put a 5 gallon bucket next to the couch to receive my waste. My poor husband and daughter had to deal with that! After a month I could get up and walk by myself. After two more months I went back to work, but I wore a back brace for the rest of the pregnancy. During the final trimester, I had pretty bad pain in my right hip, which was diagnosed as bursitis.
Another auto-immune condition reared its ugly head (and I mean ugly) in the summer of 2007, when I was 42. I had a SEVERE case of eczema on my back, shoulders, and thighs. After trying creams and lotions, I started eating Paleo (no grains, dairy or processed foods; only meat, vegetables, fruits, nuts, and seeds) and the eczema cleared up. That winter, I “pulled a muscle” while shoveling the driveway. The doctor put me on Vicodin and Flexeril and it calmed down.
Between the ages of 44 and 47 I was in the best health of my life! I was eating the Paleo diet and I had joined a Crossfit gym. I could deadlift 197#, bench press 132#, back squat 155# and shoulder press 90#. I could do 17 pull-ups in a row and a “Murph” in under 50 minutes (that’s a one mile run, then 100 pull-ups, 200 push-ups, 300 squats, then run another mile). I was so happy and healthy and proud of myself! All of that came crashing down when I went through a divorce and a year later my ex-husband died suddenly. Under such stressful circumstances the eczema came back, and I ruptured my meniscus and had to have surgery. I was on crutches for 6 weeks because the doctor found bone damage in my knee during the surgery.
In December 2011, a few weeks after getting off crutches I was anxious to get back to full strength and so I went back to the gym. The day after a workout that involved a lot of squats, I experienced really bad pain in my upper hamstrings, where they attach to the sit bones. My tailbone hadn’t bothered me in years, but once again sitting for more than 10 minutes was excruciating! Back to the doctor I went. He thought it was a hamstring injury and sent me to physical therapy. After a few months of PT, the pain wasn’t showing much improvement, plus I started waking up very achy in my neck, shoulders, low back, hips, and knees. This pain was worse in the mornings and got a little better during the day, but it was always there. Friends started to notice me limping and walking around like I had done a Murph every day. And that’s what it felt like! I had never experienced this much pain before in my life! I couldn’t reach down to put on socks and shoes. I couldn’t reach over head to put on a shirt. It took me a full 3 minutes to get down on the floor to stretch at night, and then a full 3 minutes to get back up because the pain slowed me down so much. Sadly, I had to quit Crossfit.
I went to my local clinic where I saw my favorite FNP Dale Yokum. I will be forever grateful to him because he listened to me. I had known him for a few years and he realized that this amount of pain was not normal for me. He ran a few blood tests for inflammation and rheumatoid factor and referred me to a rheumatologist. My first appointment was in July of 2012. She thought it was reactive arthritis, did blood tests and x-rays, and put me on Prednisone for immediate pain relief. Later, she sent my lab results to me in the mail where I found the positive HLA-b27 result in black and white. At my next visit in September we discussed AS symptoms and prognosis, and she put me on Sulfasalazine, which seemed to work as long as I was still taking the Prednisone, too.
Over the next 6 months my pain was relatively controlled, but I started to experience extreme brain fog and fatigue. I did a lot of research on the Internet and joined the SAA. After I weaned off the Prednisone the pain in my hips and low back got worse so at my next rheumy visit I started Indomethacin. It helped with the inflammation, but I knew that something else was going on. In March of 2013, just after I turned 49 I went to a local MD who, thankfully, has some rather alternative ideas. He ran some different tests and found out that I had insufficient adrenal function, nocturnal hypoxia and was hypothyroid. My body was not getting enough oxygen at night and was not producing enough hormones to function properly. He also gave me an MMJ prescription, which I hardly use, but it’s nice to have.
By the spring of this year, I was on 6 different prescription meds and 7 different supplements, plus sleeping with an oxygen machine at night. And I was still having pain and fatigue issues. I was seriously thinking about Enbrel and talked to my doctor about it at my visit in June. But then I ordered Carol Sinclair’s book, The IBS Low-Starch Diet from Amazon after reading about it during my hours of internet research. I thought I’d try the diet before going on biologics. I had read over 500 of the stories on Cookie’s Faces of AS and I knew that many fellow ASers had tried biologics. It seemed like in most of the stories, the biologics worked great at first, but after a few months or sometimes years something changed and it didn’t work so well. Or sometimes the person with AS started having complications or infections because of the biologic. Even people who were happy with the meds would say things like, “Enbrel (or another) works well, but I still have some flare-ups and get tired easily”. So, in an effort to stay on medication with the lowest side-effects for as long as possible, I started the LSD (low starch diet).
Now I’ve only been on the LSD for a few months, but so far – I LOVE IT! I can say the same things that biologic users do – I still have a little pain and fatigue, but overall the LSD has made a huge difference! My brain fog has all but disappeared; my range of motion is better in all joints; I can do yoga again; sometimes I still have to take an afternoon nap, but my energy levels are higher than before; I can sit for hours (if I need to, like on long car trips) without pain. I am still taking my prescriptions, but I am not going to start Enbrel until/unless the diet stops working. I am so happy to have a more natural/healthy choice available.
Last spring I had to cancel a trip to my 30 high school reunion. I was so excited about going and was very sad that I had to cancel because of the pain I was in. Before starting the diet, my younger daughter and I went to Florida with family and I had to get a wheelchair when we went to the Universal theme park. This summer, after starting the diet, I took my younger daughter on a 2 week trip to visit family in the Midwest with no problems. In July, we went to my older daughter’s wedding in San Antonio. We walked up and down the Riverwalk and even went to Sea World one day. I walked for hours with NO wheelchair!
Anyone who is reading this and is at the end of their rope with pain: the book costs a lot less than your prescriptions do! It can’t hurt to try! Here’s what I eat: all kinds of meat (except sausage), all kinds of fruit (except bananas), any raw vegetables (like in salads), dairy (some LSD people can’t tolerate dairy), a few nuts like almonds and macadamias, and natural sweeteners like honey, stevia, and maple syrup. Oh, and chocolate! And I’m OK with that.
When people ask, “How can you give up bread, pasta, pastries, potatoes, etc?” I tell them, “I’m not giving up food, I’m giving up PAIN!” When I went to Costa Rica last year with my best friend, I had to sit on the beach and watch while she took surfing lessons because I was in too much pain (even with Vicodin) to try surfing. If you ask me what I would rather do: eat a donut or go surfing in Costa Rica, my answer is SURFING! With no pain!
That’s all for now. Keep on moving, searching, and trying new things. Never give up!
Written July 16, 2013.
Ridgway, Colorado, United States of America