My name is Katie Lynch. I am 58 years old. I am a wife, a mom of 3 adult kids, grandma of 7, a former LPN and an AS warrior. I was diagnosed with AS three years ago although looking back AS has always been a part of my life.
In 9th grade, I developed very painful, stiff knees. The doctors did not know what was causing it. If I banged a knee, it caused me to roll on the floor in incredible pain. My mom suffered from very bad arthritis in her knees. The knee pain continued on and off into my 20’s and then just stopped. In 11th grade, I developed very painful hips. My mom took me to a chiropractor who said that I had curvature of the spine and one leg was shorter than the other. He put a lift in my shoe and the pain eased up. As a senior in High School, I developed a butterfly pattern rash on my face. My mom took me to Albany Med where I was tested for Lupus. The rash looked exactly like a Lupus rash and the doctor had interns coming in to look at my rash so they could see what Lupus looked like.. but I was Negative for Lupus. Told it was a sun allergy and to keep out of the sun. In college I developed a very bad case of Psoriasis on my face. This came and went for about 10 years. The Dr. said the cause was stress. When I was 23 and pregnant with my first baby, I had my first debilitating back pain. I was told it was from the baby lying on the sciatic nerve. It was so bad that I had to drag my left leg and I could not sit on a hard chair, until about 8 months after he was born. That pain did not come back with my other two pregnancies. But in my 30’s, I would get random bouts of debilitating back pain with stiffness. I could not move or straighten up. Always it was chalked up to “back strain” I was a nurse, I did a lot of heavy lifting, made sense.
So I learned to live with these flare up’s of back pain, sometimes having to quit my jobs or take a leave of absence. I would take jobs that I thought did not involve heavy lifting, like a school nurse, but I still had flare up’s and it baffled me. In 1999, I was lifting a heavy patient into a wheel chair when her pants got stuck and I was left holding her in midair until someone came to help me. I felt my back give out. The pain was horrendous. I had two herniated disks. I could NO longer work because the pain from this just became intolerable. The Neurologist declared me 80% disabled and told me my nursing days were Over!!!
In the mean time, my older brother had had 4 unsuccessful back surgeries. They thought he suffered from “mechanical back problems” as well. He was put on large doses of Prednisone, he developed diabetes from that. His heart enlarged. They did not know why. He told me “Please do NOT get back surgery”. He died in 2000 at age 52. I did not get back surgery. I know now he most likely had AS.
I continued to get worse. I could not work a regular 9-5 job because I could not get out of bed half of the time. I started to do home day care with my mom and daughter for back up. I would wake up stiff as a board, not even being able to turn over in bed. Until I took a hot shower and that would help. I started to sleep in a recliner so I could grab the side of the chair to move position. There were times when I could not even walk, or get out of bed or get myself to the bathroom unassisted. And through the next 15 years, the doctors kept telling me it was bulging disks, spinal stenosis, spondylitis and DDD. They sent me to PT which made it worse, they sent me to a chiropractor which made my condition much worse. They gave me a back brace. They sent me to an Ortho guy who said “I have NO idea what is causing your pain” and dismissed me like I was a hypochondriac. I was afraid to go to the doctor because I didn’t like being treated like a drug seeker! I was a single mom and somehow I managed to raise my three kids through this. Looking back, I don’t know how I did it.
In 2010, I thought I had pink eye. (floaters and extreme light sensitivity) I went to the Opthomologist. She told me that I had Iritis and that it was only caused by arthritis or an auto-immune disease. I was sent back to my doctor, she did blood work, Nothing showed up!
My Dad died and my mom was dx’d with Alzheimer disease. So, she came to live with us. For 8 years I was her caretaker. There were periods where I did seem to have a string of good months. Even almost an entire year. When I was 50, I met a great man and we got married. He knew I had a bad back and there were times when I was in bed for a week but the flare up’s were not as frequent as they were to become..
. In 2014, my younger brother decided my mom should go in a nursing home. She had lived with me for 6 years by this point and he didn’t want to go through me to visit her… very long story.. but I had to get a lawyer, had to be investigated and have people into my home, had to go to court. The stress was unbelievable. I could not believe he could do such a thing to my mom who was very happy and well adjusted in our home. I couldn’t stand the thought of her in a nursing home and I knew it would kill her. To say I was freaking out is an understatement. I couldn’t sleep or eat and I cried constantly. I won the court case and my mom got to stay home. And I went into a 4 month long flare. Agony, everything was affected, my eye, my back and this time my hips. Finally my Dr. thought to X ray my hips (nobody had ever done that before) and there is was, tons of inflammation. Sent straight away to a Rhuemy who dx’d me with AS on the spot.
And then came the decision making, of going on Biologics or not. I did my homework as to the pro’s and con’s, I also asked my neurologist. He said that since I had a skin cancer removed, he thought I was too high of a risk to go on Humira or Enbrel. At first, the Rhuemy had me on high doses of Prednisone, for 3 months. I ended up passing out, developed High BP and got a horrible case of shingles. I stopped taking Prednisone. I looked like a pregnant chip monk, all bloated up. He gave pretty much told me if I did not want to take a biologic, that there was not much he could do for me. For the next two years, I tried a plethora of drugs, none of them worked. Celebrex, gabatine, mobic, Diclofenac, , topical ointments, lidocaine patches, …. My night stand looked like a small pharmacy. The only OTC thing that has ever worked for my pain is regular aspirin or a a prescription for a narcotic. (but those were hard to get and few and far between)
Present day.. My mom and my Mother in law passed away this passed December and afterward, I had another 3 month long flare. Maybe a good week in between only to go back to another flare..I can’t wipe myself very good or turn a certain way because I now have rib involvement. I don’t sleep well because I am either in pain or I have to pee like every hour.
Some days I get up and feel like I twisted my knee or sprained my ankle.. I’m not as stiff as I use to be but I have new symptoms, like not being able to lift my right leg. Pain in my thigh and leg. Mid back muscle spasms and a feeling like my ribs are sticking togetehr. These are all new developments.
I can’t take aspirin now, my stomach lining is ruined from all the years I took 3 aspirin just to get out of bed. , I’ve been referred to a gastro guy. I have an ulcer and am H Pylori positive. I have interstitial cystitis that took two years to finally diagnose as they kept treating me for a UTI. I have to go for PT for my pelvic floor. The only drugs I take are Omerazapole (for my tummy) and Tylenol 3 if needed. Once and awhile I take a Flexiril. I am on a low starch/low sugar diet… trying to knock out the dreaded Klebsiella bacteria. I am also positive for H pylori. I’m not going to lie and say that I don’t get depressed. I do, and often, because I miss the energy that I use to have because I can’t do what I want to do, because my husband thought he married a healthy active women and I feel guilty that I can’t do what I use to do. But… I garden, fish, camp, play with my grandchildren, play the guitar, do charcoal sketches, depending on my physical limitations. Yesterday, I sat in the sand box with my 4 year old grandson and played with him, he loved it. I nearly passed out from the pain of trying to get up out of there.. but to me these things are worth the effort and the pain. I try and push past it. I keep a gratitude list. There is Always something to be grateful for. I am my own best advocate, I belong to groups for AS, I talk to other people who have it, I take any good advice that I can get, I research natural ways of healing. I take turmeric paste with black pepper, Oregano and fish oil, I drink Kefir, and eat yogurt, fermented foods and take probiotics. If I can’t be physically active, I try and do a sketch, or read a good book. I refuse to let AS define my life. I do what I can, when I can and I keep on keeping on. Sincerely, Another strong AS warrior!
New York, United States of America