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Friday, May 26, 2017

My journey through psoriatic arthritis and depression

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.

Three weeks after the bone scanLater that summer



The one diagnosis that came later was major depressive disorder (as you may have guessed from some of my earlier descriptions). I had been in a fog really since Elizabeth turned two, at the beginning of all of this, and it was gradually worsening. I was tired all the time, lethargic, and experiencing increasing anxiety. It all came to a head in January of 2016 when I was standing in my classroom surrounded by students as they entered class and was overwhelmed with panic. All I could see was a haze of people, and could feel myself about to lose control. I went into the copy room and fell apart. One student actually came in and saw me and got the whole room settled down – he thought I was upset with their behavior. That week, I went to the doctor where, without any prompting, they offered me a depression screening. I took it, erring on the side of minimizing my symptoms, and when the doctor came in he said I had scored well in the range to be diagnosed with depression. He started me on Cymbalta, which changed my life mentally just like Humira had physically. Within a few days, I stopped crying all the time. I started doing the dishes and playing with Elizabeth. I engaged with my students. I talked to Ryan again.  


Life isn’t perfect, by a long shot. I’m still working to repair the damage that years of undiagnosed depression did to my marriage. I’m still fighting the desire to stare into space and do nothing for hours at a time. 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.

Monday, February 17, 2014

Elizabeth's Firsts this month

1st time making chores go by faster: she emptied the dishwasher of everything plastic and got it all on the right shelves in the pantry, then passed me silverware to put away. She also climbed head first into the laundry basket and tossed out clothes faster than I could sort them into piles - and didn't scatter the existing piles once. Then she turned on the washing machine for me. She didn't get the temperature settings right though - maybe next time. 

1st total meltdown in the grocery store: The day before Valentine's Day, I had to run in to get snacks for her class party and thought it would be nice to let her help me pick things out. Upon being told that we didn't need a grocery cart, she fling herself down on her face in front of the florist stand and started screaming. She didn't stop until a nice clerk gave her a free chocolate covered strawberry. Then she did it AGAIN in the goldfish aisle. I'm pretty sure she ate half a bag of goldfish before we got out of the store. But her valentines were cute :)


Saturday, January 25, 2014

Conflict on the playground

I thought my biggest worry with Elizabeth, for the moment, was going to be teaching her not to hit, pinch, and pull hair. She does all three of these - a lot. She actually came home from school on Thursday  this week with a nasty bruise from a bite - her teacher obviously didn't tell me who did it, but did let me know that Elizabeth had been pulling hair and pinching faces all day, so it may have been provoked. So I thought we just needed to teach her to stop hurting her friends (and us) and that would be that. If only ...

Today, while Elizabeth was playing on the playground equipment at Central Market, I discovered a new problem. A little 2-year-old girl took a liking to Elizabeth and followed her around trying to hug her and pet her arm and play with her hair. All perfectly innocent, except that Elizabeth doesn't like being touched (or talked to, really) by strangers, of any age. She'll say hi from the safety of my arms (if she's approached carefully and without too much fanfare), but otherwise she usually just stares people down who want to talk to her or touch her. 

That's what she did today. This girl kept following her, and Elizabeth kept edging away until, not wanting to look like a jerk of a mom since the other girl's mom was right there, I said, "Elizabeth can you give her a hug?" She very nicely complied, then tried to get back to playing - but the other little girl wouldn't leave her alone. Finally, when the other girl tried to play with her hair, Elizabeth had enough and slapped her in the arm. I had to say "no, we don't hit," and apologize to the other mom, but really, I was cheering that Elizabeth had stood up for herself and knocked the other girl away. 

So here's the worry. I don't want to raise Elizabeth to be anti-social, anti-touch - but at the same time, I want to teach her about personal space and respecting her own and others' boundaries - which is obviously hard when parents encourage their kids to keep chasing mine down for that hug. So what's the solution? How do you raise a toddler with limited reasoning ability to be able to reject interaction with others when they want, without just being rude? 

Wednesday, June 12, 2013

Being a working mom ...

I've recently been thinking about my choice to continue pursuing my career. Several people have asked me if I wouldn't rather stay home, or whether I feel selfish working when I don't have to, or imply that I must live for the summer when I get to keep Elizabeth with me at home. One, when I told her I'd be traveling for work this summer, looked knowingly at another woman and said, "I guess that's the new mother," as if I couldn't be expected to know any better.

In answer to those questions, no. No, I wouldn't rather stay home. No, I don't feel selfish for pursuing a career that I love, while my daughter is having a great time playing under the care of her amazing teachers. No, I don't live for the summer - in fact, I hate to admit it, but as much as I do look forward to taking Elizabeth to the zoo and playing in the pool with her this summer, I also am quite anxious about having to entertain her for twelve hours a day (ten if you don't count her nap time). I may take advantage of her daycare's summer drop-in program that allows me to buy 5 days that I can spread out over the summer and leave her with them every now and then and do something by myself.

I have an amazing husband who not only supports my desire to work, but actively encourages it and makes it easier. He either makes dinner or does the dishes every night, entertains Elizabeth after dinner and before bed in the evenings, doesn't complain when the house isn't perfectly clean all the day (or anywhere close), takes days off when she's sick and I really can't miss work, and NEVER makes me feel guilty for the decision that we made together to put Elizabeth in daycare and allow me work. This week and next, he's actually playing the single dad so that I can pursue my passion, training teachers for NMSI, and helping them to develop strategies to teach students to think, read and write critically and independently. I'm in Tennessee this week, and headed to Colorado next week.

Do I miss Elizabeth? Absolutely. Do I wish that I could have a career and spend at least a little more time with her? Sure. I check in on her several times a day via online closed circuit camera, FaceTime with her at night while I'm out of town (she's really good at responding on FaceTime - she waves and says hi, then smiles and tries to reach me through the phone), and really miss her when I get up in the morning and don't see her. But that's my problem. She won't remember ten years from now that I was out of town a few days when she was one. She gets excited about going to school in the mornings, and is actually less grouchy mid-morning when she's there, surrounded by friends and things to do, than she is at home playing with me.

I have an amazing, well-adjusted daughter who loves to play both with me and her dad and by herself, who learned to sing "Row, Row, Row" months ago, and who can currently insert the "E-I-E-I-O" in the appropriate spots in Old MacDonald (mostly). She walks, and eats well, and sleeps all night, and finger-paints, and colors, and plays well with others (except her cousin, who she likes to push over after stealing his toys) ... the list could go on and on. She's awesome, and I'm a working mom. I think the arrangement is just fine.

Tuesday, May 21, 2013

Praying for Parents in Oklahoma

As I was putting Elizabeth to bed tonight, I began to say her prayers with her just like we do every night. We started by thanking God for the rain, and that Elizabeth had had a good day today. Then we thanked God for Mom and Dad's good days, and asked God to help Elizabeth sleep well tonight - to keep her teeth from bothering her, and to help her ears be healthy.

And then we added an extra line that doesn't usually go in our bedtime prayer (yes, the ears make it in every night) - we asked God to be with the parents in Moore who had lost their children yesterday - and that's as far as I got. As hard as I tried, I couldn't think of how specifically to pray for them. I don't know what they need right now, other than God's presence. I can't imagine going through what they are going through today. I don't know what I'd do if it were Elizabeth who had been killed in the tornado yesterday, or what I would expect God to do.

So we left it at that - "God, be with the parents in Moore tonight, and ... I don't know what else to say, but just be with them." And I felt tears come into my eyes as I said that, and gave Elizabeth an extra kiss on the forehead before I laid her down in her crib.


Monday, April 22, 2013

How hard can it be to feed a baby?

I never realized how difficult it can be to figure out what to feed a baby every day, especially one who is lactose intolerant and allergic to cinnamon. It was easier when she did purees - her favorite was Moroccan-spiced lentils with roasted eggplant - and I could just food process a big batch, freeze it, and pull out a couple cubes for dinner, along with some yogurt, cereal and fruit. We noticed a couple weeks ago though, that she was refusing to eat most of her meals, and then having a HUGE bottle of formula before bed (she did 14 ounces one night), so we decided to switch her over to finger foods. She immediately got excited about eating again, but her tastes are more discriminating now.

Yesterday she would only eat her lactose-free cheese and soy yogurt. Nothing else. We even bought a box of Cheerios to give her, since she loves eating them at school. She threw them at us, one at a time, cackling maniacally.

The meal planning gets a little crazy sometimes. I have to get the menus from school, then figure out what she can and can't eat (the lactose intolerance makes it tricky) and then decide what to send her to make sure she has at least 2 fruits and 2 vegetables during the day, along with her cheese snack. And that's not even considering dinner. Since I don't get her home until about 5:00 most days, I don't make dinner before it's time for her to eat at 5:30 (hah, I don't really make dinner at all - Ryan's a much better cook than I am). So I have to find something healthy that she's willing to eat, and then remember when we eat dinner to save a few bites of anything baby-friendly that we have.

So, I've decided to start menu planning for her, just like we do for ourselves. Here's the menu for tomorrow:

Breakfast - fresh orange slices, cheerios
Lunch - chicken nuggets, green beans, pineapple, peas & carrots
Snack - oatmeal cookie, cheese
Dinner - soy yogurt, roasted zucchini, pancake

Now if only I could figure out how to get her to actually get the food into her mouth instead of dropping it into the high chair, onto the floor, or into her hair. Oh well - one step at a time.

Tuesday, April 9, 2013

Sweet smile

Tonight Ryan came to get Elizabeth after her bath, all wrapped up in her towel and sweet-smelling, just like every night. As I handed her to him, my squirming, kicking daughter became very still and just laid back in his arms, looked up at her dad, and smiled.

The stillness only lasted about fifteen seconds, but the love that I was able to see the two of them share will last much, much longer.