I wasn’t planning on saying any of this, but I just can’t get it off my mind. I’ve had an internal monologue going, telling this story over and over, for about a week now. Maybe writing it down and sharing will finally silence it.
Elizabeth’s birthday will always be inextricably linked with my diagnosis. It started around her second birthday, three years ago. We had a party at our house, with about 20 people over. I was finishing out the school year and was posting regular Facebook updates about the cute train that I was building out of boxes to decorate the living room. What I didn’t mention was that I had severe pain in the left side of my pelvis that was giving me difficulty with walking. At her party, I tried hard not to limp and draw attention to myself as I played with all the kids, went up and down the stairs, to and from the kitchen. After everyone left, I gamely cleaned up, but I didn’t try to hide the limp any more.
Over the next couple weeks, my walking deteriorated to the point that I was dragging my left leg behind me. I couldn’t hide it anymore, so I stayed home as much as possible.
Finally, my OB and chiropractor diagnosed me with a subloxated pubic bone. The left side had slipped up over the right and gotten stuck. After a few chiropractor visits, my walking improved. I remember posting that on Facebook, actually – I was so relieved to have a diagnosis. By September, I felt relatively normal, though I would still get a twinge from time to time. In November though, it started again. I was out jogging when pain in my left sacroiliac joint pulled me up short. I slowed to a walk for a minute, stretched, then tried to jog again – I literally couldn’t make my legs move in that motion.
This continued – Yoga would make it better, then it would get worse again; walking made it better, jogging made it worse; sitting in the driver’s seat of the car felt great, but getting my legs in was a nightmare. I literally had to sit down, put my right leg in, then lift my left leg in with my hands.
Through all this, I tried very hard to keep the fear and the pain out of sight. I spent days at school sitting at my desk. I sat on the couch in the evenings until Ryan would leave the room – then I would drag my leg into the kitchen to do the dishes. When Elizabeth woke up in the middle of the night, I would pull myself up the stairwell to her room and hobble back down without waking Ryan. He had no idea how bad things had gotten. He knew that I limped sometimes, and that my back and leg hurt, but not the extent of it. In fact, we had several arguments about my not pulling my weight in the family, and I just resolved to do a better job getting things done.
In February, I visited a family doctor for the first time, hoping for answers. He diagnosed me with mono, Vitamin D deficiency, and hypothyroidism, any of which could cause joint issues. Through bloodwork, he ruled out rheumatoid arthritis, and did an MRI to look for inflammation. He also diagnosed me with sacroiliitis and gave me a belt to wear around my hips to hold my sacroiliac joint in place when I walked. It helped for a while. In fact, I was able to go to Mexico later that month for a friend’s wedding, and we walked all over San Luis Potosi – which was where I discovered that cobblestones make my back hurt very badly. I had to stop several times to sit down because I was hurting so badly, but I tried to play it off as if no big deal and started walking again as soon as I could. In fact, I danced all Saturday night – in heels – at the wedding reception. I felt like the belt might be working.
And then March came. I had been visiting a new chiropractor regularly, and when he would adjust my pelvis I would be unable to walk for a few minutes (literally couldn’t stand up) but then the pain would subside and I would feel better than when I had come in. Even with those visits though, I couldn’t run at all. I was terrified every time that I took Elizabeth out with me, because if she decided to bolt in a parking lot, there was nothing I could do about it. She did actually run one day, down the walkway at a strip mall, despite my yelling after her to stop. Fortunately, another mom out shopping stopped her and held her hand until I could get to her.
I decided this wasn’t working for me anymore and I went to see an orthopedic surgeon who put me on twelve days of steroids and sent me to a physical therapist. My first concern that we worked on was my inability to bend over and lift a leg – to put my pants on, specifically. If I bent slightly at the waist, I couldn’t lift my right leg even a centimeter off the ground. (Aside – my students found this fascinating, and I demonstrated it for them from time to time). He gave me some exercises and got my leg moving again. He even got me walking, and after three visits, running on the treadmill.
I was hopeful at that point. Ryan knew that I hadn’t been doing well (doctors’ visits and physical therapy are hard to hide) but thought we were through the worst of it. So a few days later when I relapsed, I tried again to hide it. I started having to get creative with my mobility – calling Elizabeth’s daycare from the parking lot to come get her in and out of the car so I wouldn’t have to walk inside, having students push me down the hall in my rolling chair, having students pull me up after I would crouch down to consult with them about their work, leaning on walls for support as I walked through the hallways.
I went back to the ortho, and he scheduled me for SI joint pain injections. The $800 procedure worked for about 24 hours and I was back to square one. So I found a new orthopedic surgeon who sent me for my second MRI and had me follow up in two weeks.
So now it was May. I had started sleeping upstairs in the guest bedroom so that I wouldn’t have to climb stairs at night to get Elizabeth (Ryan said he would do it, but I insisted I was fine as long as I didn’t have to climb stairs repeatedly). She had moved into a big girl bed, so she would come and climb in with me in the night if she woke up, saving me the pain of getting up. One evening, I was meeting a group of students and parents at Panera for Writing Club, and on the way out to the car had to get help walking the parking lot. The father who assisted me, his daughter told me later, said that he doubted I’d make it to school the next day – but I made it, and relished being stronger than he’d given me credit for.
That day, Ryan signed a job offer from a company in Delaware, and I let my principal know that I wouldn’t be back the next year. The next day, I got stuck in the hallway outside my room. I was on steroids again from the new orthopedic surgeon, and every day I would feel fine until the effects would wear off (usually around four o’clock). I’d stayed too late, and as I was walking down the hallway, I had to fall against the wall because my right leg wouldn’t move. I eventually managed to pull myself to the parking lot, then over about 20 minutes dragged myself to the car before collapsing into the seat in tears. That was a Friday – I never went back into that school building.
Sunday morning, I got out of bed to let the cat out, and on my way back to bed, fell onto the stairs. Over 45 minutes, I worked my way back to bed and lay there. I still don’t know why I didn’t call Ryan, who was asleep right on the other side of the bed. When he woke up, I told him that I couldn’t get up. In fact, when I tried to move, it caused such intense pain that I would gasp for breath and fall back. I called in sick for the next day, and called my brother and his fiancée to come up from Waco to help out. The next day, they took Elizabeth to school while Ryan took me to the orthopedic surgeon – who diagnosed me with a fracture of the sacral ala. He put me on immediate six week bedrest to heal and gave me more steroids and my first NSAID, Meloxicam. He also scheduled a bone scan to verify the diagnosis.
That day, I had to tell James and Jessica that I wouldn’t be at their wedding that was a few weeks away, and that Elizabeth couldn’t be there to be their flower girl. Of course they were understanding, but I felt terrible. On Tuesday, Ryan went to work and James would come and help me out of bed and into a rolling office chair any time I needed to use the bathroom. Fortunately, if he pushed me right up to the door, I could work my way inside and then back out onto the chair on my own. Then he would pick me up, usually crying or wincing from pain, and put me back into bed. I was able to get a walker by Wednesday, which helped with moving around when I needed to. If I kept most of my weight on my arms I could walk a little.
That was the low point. We’d been planning for Elizabeth’s third birthday party, and I realized there was no way I’d be able to host it. We had decided that Elizabeth and I would move down to Houston to stay with Ryan’s parents for a few weeks while he staged the house to sell and then moved to Delaware to start his new job, and that once my bed rest was over we would join him. I was going to cancel the party when some friends instead came over with decorations, food, and presents that Elizabeth could play with beside me in bed and had a whole birthday party while I lay on the couch in the middle of it. Three days later, we had moved to Houston.
Based on my consultation with Dr. Google, I wasn’t sure of the doctor’s diagnosis, so I had scheduled a follow-up with yet another orthopedic surgeon in Houston. He took one look at my MRIs and said that I definitely did NOT have a fracture or any other orthopedic issue. He ordered a CT scan to decide whether to send me to oncology or to rheumatology.
Once that scan came back with no sign of bone lesions, everything went very quickly. I got into a rheumatologist within a week, where I was diagnosed on my first visit with psoriatic arthritis – a seronegative autoimmune arthritis that usually accompanies skin psoriasis (which, as it turns out, I have, though I’d never been diagnosed before last month). He put me on a biologic drug, Humira, along with one more round of steroids and an increased dose of Meloxicam to tide me over until it started working, and the world changed. At my follow-up appointment a couple days later, I was able to put a little weight on my legs as I used the walker. Literally three weeks to the day since my bone scan, I was able to fly on my own the next week to Virginia to be at my brother’s wedding – without the walker (though I was pretty slow getting through the airport and nearly missed a connection
because of it). And a few weeks later, Elizabeth and I were able to move to Delaware to join Ryan.
Life isn’t perfect, by a long shot. There are days that the fatigue is so overwhelming that I’ve either taken a nap in the parking lot at work or at Elizabeth’s school, or gone straight to bed once I get home. I’ve had two major flare-ups that have laid me on my back again for a few days. The arthritis has moved from just my SI joint to my all my pelvic joints and lower back, ankles, knees, feet, and thumb. I’m terrified some days that my medication will stop working and I’ll live the rest of my life in that pain or be confined to a wheelchair or lose the ability to use my hands. But I’m also out taking sailing lessons on the Delaware River, singing with an amazing organization, volunteering at church, playing tag and Sly Fox in the back yard. And I’m currently putting the finishing touches on Elizabeth’s fifth birthday party, which is going to be the kick-off to an epic fifth birthday weekend – party, two-day trip to New York, then a piñata at school and the trampoline park on her actual birthday. So my life isn’t perfect – no one’s is – but I’m hopeful, and I’m happy.