My name is Jason Ladd. I am in my 40’s. I have A.S. I was diagnosed this year in April, although I’ve had symptoms since I was in my teens/20’s. It started with pain in my heels, and progressed to hip pain in my mid 20’s. Low back pain in my late 20’s. Mid back pain, neck and chest pain in my 30’s. And in my late 30’s-40 I started getting getting inflammation to such a degree I had difficulty moving around. Some days all I could manage was to get home from work, cook dinner and go to bed. I’ve had many days throughout my life that I’ve had trouble walking. My eyes, skin, arm-leg-hand joints are also affected, aside from my axial skeleton. I’ve been misdiagnosed with everything under the sun. From heart problems, bone spurs, pleurisy, carpel tunnel, degenerative disk disease, herniated disks, osteoarthritis, and allergies. First doctors tried to tell me it was a sports medicine related issue, and that I wasn’t stretching right. Then they told me it was ergonomic and I was lazy by not sitting right. Then they sent me to a chiropractor for years, yet it never helped. For years I thought I had heart problems due to chest pains, yet all the tests showed my heart was fine. I also have scoliosis, high blood pressure, psoriasis and obstructive sleep apnea as well as depression. Since I was in my mid 20’s there has never been one day that I’ve not been in constant if not pain, discomfort. Since my 20’s I’ve taken Advil and Tylenol 2-3x a day to even function. I’ve never had a therapy, or medication help or cure my pain. And I’ve done everything from exercise, to acupuncture, to diets. For years I felt broken or a freak. People would ask me how I was, and I always would lie and say fine, great, good, because who is going to understand what 24/7 pain is? How do you explain you’re broken and nothing will fix you yet you still have to live. I do everything you do but with intense pain, meanwhile behind glassy eyes silently pleading for anyone if not to understand, but to acknowledge it without sympathy, pity, or apology; dreading others attempts to deflect, or tell you how they have pain as well or even better offer advice trying and fix you if you only did such and such.
Just getting a simple diagnosis last April changed my world overnight for the better. I felt like this huge weight lifted off me. I’ve been amazed at having to educate the medical community about A.S. I was the 2nd person my PT had ever treated. She had to look up online what exercises to give me. I could have saved her the time and copay by telling her myself. I am still floored how many years went by with me being misdiagnosed and doctors never following up or making the connection, or me accepting what they said and not advocating for further help.
Despite all that I try my best to keep plugging along. While I have bad days where I am not able to do much, I have a lot of days, where I can keep going. I have a very high tolerance for pain and not much keeps me down. I am an avid walker; 30-60 min a day all my life, obsessive gardener, cook, artist, writer and a voracious reader. I have a family, a house and a full time job. I am on my 2nd month of weekly Enbrel injections. So far, while I have painful rashy injection site reactions it’s a miracle drug. My pain went from a 10 to a 2-to-4 seven days a week. And for at least 4-5 days of the week it completely removes all my inflammation and chronic fatigue and I have range of motion I’ve not experienced since I was in my 20’s. I rarely take pain meds now. Also, my blood pressure dropped by 10 points after the inflammation was lowered. I’ve only had 2 flair ups since I started taking it. So for me, I feel it’s worth the risk. Few people understand my willingness to take it, but after so many years of being in horrific pain I am willing to gamble for a few or more with freedom. Hopefully life will only get better. One of the things this condition has taught me is how important it is to be your own advocate and not give into what others think or believe about you. It’s almost impossible to get others to relate or understand the pain this disease causes. So you have to let it go and not worry. You can’t let pain define you. It’s part of you, but not who you are. You cant help what others think or believe or how they react. Most importantly you have to have compassion for yourself. Being human is hard, being yourself isn’t, we are more than pain.
Minnesota, United States of America