A.S. Face 0823: Amanda Nickerson
I’m Amanda & I was diagnosed with AS at 25 August 2012. I can remember being in chronic pain since I was about 11-my joints aching after sitting in hard chairs all day & I can vividly remember never sleeping through the night. I thought it was normal after years of seeing my parents in constant pain. My dad has AS, ulcerative colitis, arthritis & psoriasis. My mom has chrons, multiple herniated discs, arthritis & fibromyalgia. So far I know of AS, arthritis & fibromyalgia along with trauma-induced seizures.
I tried not to let my pain hinder me & participated in activities from marching band to track & alpine skiing. I loved working out but still had this feeling I was in way too much pain. As far as my charts, shin splints & tendonitis were the reason my legs & hips hurt. Other than that the few times I voiced my pain I was told it was in my head or I just needed to try harder (from coaches & drs) so I pushed harder & tried ignoring it.
After getting married & having two children (and two excruciating & difficult pregnancies) the pain just continued to get worse. Then last spring I got strep which was treated with antibiotics. Then hand foot & mouth=another course of stronger antibiotics & then I got what I thought was the flu & after a few days became very ill. When I finally told my husband I was eliminating blood he rushed me to the er where they found out I had c-diff from my gut flora being killed off by antibiotics & was now damaging some part of my digestive tract. Ironically, I was treated with… even stronger antibiotics.
After a couple of weeks I started healing & just another day playing with my kids, running around in the backyard I noticed later my knees hurt. Of course from years of lessons, I ignored the pain. The next day I woke to knees the size of grapefruits. It was excruciating & I could barely stilt around for a bit at a time. Drs kept telling me they had no idea what was wrong. Then my younger sister suggested I see a rheumatologist. I went back to my Dr & asked for a referral. I was referred to one who immediately tested for hlab-27 as it runs in my family & in late June I received a positive result for the marker.
I wasn’t diagnosed with AS until 2 months later. Meanwhile, I ping ponged between two rheumatologists who were having a little… feud over what my disease was. The first Dr said AS & the second guessed reactive arthritis. They both told me the other was wrong until I finally demanded they do the sacroiliac & lumbar xray which proved the AS diagnosis. I was really hoping for the other diagnosis but don’t we all hope for the lesser of the evils?
Meanwhile, I was on prednisone & physical therapy as the swelling wouldn’t go down & I was losing mobility. I lost a lot of muscle & was losing weight & I was already only 120 lbs at 5’7″. It was at that point the nasty c-diff returned & I was hospitalized as my weakened body couldn’t fend it off. It was the worst hospital stay I’ve endured because not only was I unable to move & needed to use the bathroom every five minutes (no exaggeration) the nurses never came when I hit the call button, my iv machine was dying so I turned it off, they forgot to feed me, I overheard two nurses talking about me almost dying & then the grand finale of missing two doses of my meds because the Dr who was releasing me had to find a picture of his daughter in his phone (half an hour) that he swore I looked like & the pharmacy closed seconds before we got there. I left the hospital at 107 lbs, covered in failed iv attempts & blood draws, busted veins & still sick but fortunately, on the mend.
So, after going from being bedridden to a wheelchair then a walker over the course of 5 months & trying methotrexate & becoming seriously ill then stopping treatment… For about 7 months now I’ve been walking without assistance & am taking nothing except vitamins, the occasional nsaid, a small dose of prednisone for a week when a flare starts (on it now after I hurt my knee mowing & it got progressively worse over a few days) & very seldom, vicodin. I’m reasonably active but I avoid high impact activities & try to pace myself but it can be hard when I want to keep up with my active family.
I’m a stay at home mom of a 3.5 y.o. daughter & 5 y.o. son & I do my best every day. A lot of days I never make it out of my pjs & it’s all I can do to take care of my kids but I have an awesome family & the most loving & supportive husband a girl could dream of. I’m writing this now because tonight he said “I don’t care what anyone else says or does. You have AS. No one knows how bad it really is.” I forget that even if one’s in constant horrible pain after another sleepless night & putting on the best face they can this disease can look like nothing to the outsider. I think we’d all agree it gets old talking about the pain & for the most part, people just don’t understand.
(I read a wonderful article about a women with lupus explaining how she lives to her healthy friend in terms of spoons. I remind myself every day of how many spoons I have or don’t as I frequently borrow against tomorrow’s for today.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ *I don’t own or have any affiliation with this article)
What the people in my life do understand is that I’m trying my best. I’m young with little wisdom & in some ways, still trying to accept this myself but this site alone has been an immense help. Thanks for hanging in there with me through the novel & for the support & courage this community has given me.
Wisconsin United States of America