My name is Sally Stanfill, I’m 29 and currently live in Vancouver, Washington. I’ve had back problems since I was about 8 years old, and complained about it constantly, but my parents thought I was just imagining things. I think over the years I just learned to live with the pain. But in 2008 I started having unbearable nerve pain. I wasn’t sleeping and I had a hard time caring for my son, who was only one at the time, so I decided to see a specialist and was told that I would need back surgery to stabilize my spine (I never thought I’d ever experience that kind of pain in my lifetime). A month after back surgery I also had an appendectomy, which seemed like nothing considering I was still recovering from the back surgery. It took me over a year to fully recover, but I was still feeling really tired, achy and it felt like my joints were made of ice, which according to my doctor was to be expected, considering I was getting off of the pain medication.
In November of 2011 I noticed I was getting more and more exhausted, and no amount of rest, exercise or caffeine helped. Along with fatigue I also experienced frequent headaches and blurred vision, which in my mind screamed diabetes. Both of my parents are diabetics, so I knew there was a decent chance of me having it as well. I made an appointment with my primary, who then ordered a comprehensive metabolic panel, just to make sure he wouldn’t miss anything. My test results showed my blood sugar count was normal, but I had a positive ANA, a high sed rate and high levels of protein, so he ordered more tests and sent me to see a rheumatologist. By this time I was finding it so hard just to get out of bed in the morning. My joints in my elbows, knees and hands were so stiff, my back was really tight and my muscles were so sore. It was like I had a never ending flu.
My rheumatologist’s first guess was lupus, but since I only had 3 out of 4 markers, he wasn’t able to give that diagnosis. Instead I was diagnosed with Undifferentiated Connective Tissue Disease and temporarily treated for Lupus-Like symptoms. Unfortunately I was still having a lot of back pain, which I didn’t think anything of, because of the back surgery. Over the course of a year I saw a urologist, nephrologist, gastroenterologist, pulmonologist and had countless blood tests, MRI’s and x-rays. Then in March of 2013 my rheumatologist ordered an MRI for my lower back, which is where he found the inflammation in my sacroiliac joint, which as most of you know is the hallmark of AS. That same day my doctor told me about Humira, and how it has been proven to reduce the symptoms and possibly stop the progression of AS (not without some potentially serious side effects, of course). After going over the pros and cons of the drug, we decided to try it, along with other medications to help combat the pain.
It’s been about 2 1/2 months since my diagnosis, and sadly I haven’t seen much improvement, but my rheumatologist assures me that it’s still too early too tell. So far, I’ve had one day without pain. I actually cried because I forgot what it was like to feel normal, it was like a dream. Unfortunately reality set in the following day. I can’t explain how frustrating it is to have zero control of your body (I know a lot of you understand where I’m coming from).
One thing I’ve learned is, AS is unpredictable. It doesn’t care if you got 8 hours of sleep, or if your little one kept you up all night, in the end it’s gonna do what it wants. The good news is, there are ways to fight back, whether it’s medications, a change in diet or physical therapy. I’m choosing to be optimistic (as extremely hard as that is), take it one day at a time and fight. I have the best family in the World and I can’t let this disease take me away from them.
Thanks for reading, and I wish you all love, health and happiness ❤
Hugs, Sally Stanfill
Washington, United States of America