Crafting Saved My Life

Honesty, if it weren't for all of my projects this winter, I would have gone insane. The OTs in my life (and there are quite a few) stressed the importance of finding things I enjoyed doing that I could still do with my disability. So I found activities that I liked, gave me a sense of purpose, and kept my hands busy. Busy hands stemmed my worrying by giving me something else to fixate on. When I start to worry that in nine days someone will have their hand in my pelvis and cut up my hip bones, I go sew. It's very therapeutic. It's similar to when our dogs get really antsy and my mom gives them a bone to calm them down. Crafts are stress smoking for the non-smoker. In my nerdiest of moments, I pretend that I am a Jane Austen heroine, doing what ladies do all day: lady-like crafts and pastimes. Lizzie Bennett probably didn't lounge in her pajamas until 1pm and follow celebrity gossip blogs, but I know that she could - like me, her spirit sister - embroider up some nice handkerchiefs.

My first project were these whimsical tablecloths:

They're always covered in hair (the cats, mine is too short to shed) and there isn't quite enough room on our table to lay out all four of them. I don't normally like cutesy but I saw the pattern and I knew I had to have lovebirds placemats to call my own.

Next up came the obsessive baking:

 

Everyone should know how to make bread, right? Making bread made me feel like I was reclaiming my inner pioneer woman by getting in touch with how basics are made. Never mind that I used my kitchen-aid to mix the dough. The baking phase was fun, and I was sad when I couldn't do all the standing required to bake and cook. I then turned my attention to finishing unfinished projects:

 

Haha morphine bottle to the right

I also started some new unfinished projects. I learned embroidery, very fun:

I also started this bizarre wool cat applique "penny rug" project. It's very confusing: why do the cats have carrot noses? Why are some cats wearing hats? I started it when I was visiting Toronto and my friend Jen was taken with it. Jen has claimed it.

I completed my first commissioned project:

 

Oh, and I made a recovery quilt for myself. I put that one up on an earlier post. Actually all the frenzied crafting started to make my right forearm really sore from lifting the iron up and down and repeated rotary cutting. I took a break from sewing to knit a sweater for my friend Laura. It's almost done- I just have to weave the loose ends in. I knit the shit out of it pretty quickly because I have watched at least 5 NHL games (!) this year, which is way above my annual quota. Knitting is great if you're feeling stressed or worried. Or if you are watching hockey.

 

I don't yet have the heart to tackle one knitting project that is haunting me: the reverse mullet cardigan. I made it for my sister-in-law, and somehow the front ended up being a good seven inches longer than the back. It looks absolutely ridiculous. I either have to knit more or rip out a lot of stitches. Ugh.

 

The last craft I've taken on is paper piecing, a really nifty quilting method. 

 

I nearly had a major meltdown on Friday because it's tricky and I cut 240 small pieces the wrong length... but crisis averted, I figured it out, and it's really fun.

 

Oh I also got most of a wedding planned this winter. That was fun, too. Next major craft I have planned is embroidering things for the wedding.

 

For the next phase of crafting, my mother, in all her OT wisdom, is instituting "craft Tuesdays" after my surgery. I can't tell if she's joking or not. I think she is serious. What I think will happen is that you can come over with a craft and bag of M+Ms for me and we can all craft together. Therapy for all!

 

Nurses Make the Worst Patients. Fact.

Guaranteed that whenever a nurse reads in a patient's profile that they are a Registered Nurse, that nurse will say F-ck. Here's why.

1) Could you wash your hands please?

2) Hmm, that's not the vein I would have chosen.

3) What's my hemoglobin today? What was it yesterday? How's my sodium? What's my creatinine trending? Did they do a thyroid draw? Can you make sure they get one today? Thanks. Oh, good morning.

4) So I don't mean to be annoying, but you just touched the computer. And that patient. Could you please wash your hands?

5) Actually, best policy states that only three bed rails should be up on that demented patient. See, all four side rails will increase risk of falls.

6) Are we sure that's still sterile?

7) Oh I don't take unpackaged meds, sorry. I need to know what I'm taking. You can open them at the bedside, thanks.

8) I'm pretty sure I smell c-diff.

9) I don't care what the resident says. He is an idiot. Page the attending.

10) You know I'm that patient. Just wash your hands when you see me.

Of course nurses are also the most patient and understanding patients when the floor is madness. They're on top of their health and motivated to get out of the hospital. Usually they're sweet and appreciative - albeit particular - and their partners bring in awesome treats for the staff. I'll be in hospital during nurses week (I think) so I'll be extra appreciative. But please wash your hands.

PAO Pals

As a pre-teen, I was obsessed with The Babysitter's Club book series. Those girls had everything: their own phone line, curfews, boyfriends, and super long hair. Their idyllic fourth of July beach parties, complete with fireworks, hot dogs and denim cut-offs, really set me up to be disappointed in my adolescence. As a teen I had the worst trifecta of features (short hair, braces and glasses) and the only clubs I belonged to in high school were book club and honor role club. Le sigh.

As an adult I really don't care about perusing the All-American teen-girl lifestyle. Girls worry over the dumbest things. Besides, I'm part of away better group now: PAO Pals. (Everyone I've spoken to with congenital hip dysplasia I hope you're okay with this name and being part of my club. If it's too lame you can drop out, I totally understand).

I've spoken with a couple PAO peeps on the phone, and today I met with two awesome individuals, Bill and CJ. I'm really glad that everyone's shared their experiences with me. There aren't many of us, and the pre-surgery package, as I've mentioned in a previous post, gives you no idea what to expect. No one uses pay phones, Alberta Health Services. No One.

So far, my PAO pals are all normal. Their legs seem the same approximate length and they don't walk with weird limps - all good things to someone nearing their surgery date. Everyone speaks really highly of Dr. Johnson and his work: pain and quality of life are way better after surgery. Plus I've gotten indispensable advice:

• Respect the surgery.
• DO PHYSIO. It hurts and it sucks but DO PHYSIO.
• PCA no way (the little button post-surgery that delivers pain medication). Long-acting oxy is where it's at.
• Quit boozin' two weeks pre-surgery. (I'm still going to beer fest).
• Swim as soon as you can.
• Listen to Dr. Johnston. If he says no walking, no walking: your pins can shift under the weight. Ew.
• Make an excel spreadsheet to keep track of your drug intake.
• Prepare to watch TV, sleep and eat ice cream.

Plus I've seen scars, pictures of X-rays and pins in the hip, and I feel like I know what to expect the day of my surgery. My PAO people were really positive and excited for my surgery and how I would feel soon after. Everyone I've talked to is physical proof that there is life beyond surgery!

It's the Final Countdown

I'm pretty good at waiting. I hang out with a lot of 90+ people, and when you're that age all you do is wait; an attitude of patience and acceptance is necessary for a body that moves pretty slowly. I've been excellent at waiting these five months. Now that the countdown to the big day is approaching a one digit number I'm starting to freak out. Fifteen days. I kinda feel like I did back when I was a kid and there were two weeks left of summer vacation: a little excited to go to school, learn new things, and stop watching Price is Right everyday, but mostly reluctant to go meet new people, wear real clothes and give up summer.

It's hard to describe what it's like to wait for major surgery, especially as the surgery draws closer. I'm in disbelief: because of my bad luck something will happen and the surgery will be delayed for another three months. I anticipate getting my life back and maybe getting to swim and do physio in two months. Mostly I'm terrified of possible pain, surgical complications, hospitalization, and immobilization. Surprisingly I feel sad, too.

My life isn't very exciting or action packed right now. It's limited by pain. It's monotonous and quiet and structured around waiting, but it's my life and it's known. Take away the wait and I don't know what comes next. Fear makes me wistful for what I have and focus on potential losses. It makes the change harder.

Now everything I do is an actual stroke off my pre-surgery list: Easter and family dinner, done. Wedding dress, done. (Hurray!) Next up engagement photos, my last weekend and then.... May 7. It's hard to relax and enjoy anything with this auspicious countdown to someone opening me up, breaking my bones and sticking their hand in my pelvis.

I felt the same sense of anticipation overshadowed by dread before I left on my sailing trip. It was the first time I'd ventured out on my own and I was such a homebody; I loved home and hated venturing from it. People were surprised I was doing this trip because I wasn't the adventurous type, but that's why I knew I had to go. As the date crept close I couldn't remember why I'd signed up in the first place. There were so many unknowns! I wouldn't know anyone, Papua New Guinea was so remote, and there was no possible way to know if I'd packed enough sunscreen. For the first two months I was away, I felt incredibly homesick; it physically hurt how much I missed home and family. Eventually that hurt lessened and I had an amazing time.

I guess what I need to do is to be sensible: try not to panic, try not to slash giant Xs through each day in the calendar as it passes, try not to live these upcoming two weeks like a giant to-do list. It would be wise to just live in the moment. However that is impossible.  I think my goal is to not worry so much, and when I'm struck by fear to squeeze onto something really tightly and wait for the moment to pass.

Fifteen more days!

Bridal Moment

Last summer my sister banned me from watching TLC's illustrious television program Say Yes To The Dress because, simply put, it turned me into a crazy-person. I'm normally fairly level-headed but  the show amplified my impulsive streak. My thoughts ran like this: Dan is the man I want to marry, so why not just get married now? Why not just speed up the dating process and get married sooner rather than later so I can get that done and move on with life? So many girls on the show get engaged after a few months of dating, so we could too, right? Sure some of the brides who want 'butt cleavage' seem a bit shallow but I'm not like that.  If Dan isn't ready now, he will be soon enough, so I just start thinking about important things like lace or beading... ball gown or fit-and flare... number of bridesmaids... I've never seen a girl with short hear wear a veil... Maybe there are pictures on the internet...

Poor Dan. My sister was right, and I had to stop watching Say Yes. My ban was lifted at the end of January when Dan proposed. I was allowed to think about full skirts, cascading layers of tulle, and hints of blush. And today it was my time to have the 'bridal moment' Randy, from Say Yes, talks about so much.

Of course, I never imagined that buying a dress would happen exactly how it is now happening. I didn't think my story would resemble the 'brides overcoming the odds' or 'gimpy brides' themed episodes. We needed to space out our appointments because I get pretty fatigued. There's a lot of standing, stepping up and down platforms, twisting, and preening in heavy dresses. I definitely needed more help than your average bride stepping in and out of the gowns, and I needed a few rest breaks in the hour-long appointment. However, my disability didn't dampen the process at all. With each dress I transformed into a bride wearing white. No one saw my bad hip, not even me: they saw me smiling and feeling radiant in billowing fabrics. I know it sounds a little corny, but my experience is so much richer because of what I've gone through.

Dan and I have grown a lot as partners during this process. We've tackled issues that not many couples our age have to face. Our love, patience and trust have been tested and will be tested again after my surgery. I am excited for our fun wedding next year but the marriage that will follow is much more important. Yes, I'm dreaming of my dress, but I'm dreaming of the life I will share with Dan, too.

I was a little worried, a few weeks ago, that my disability would overshadow my bridal moment. I now know that was a thought conceived out of self-pity. I had a wonderful morning: I spent the day with two of the most important people in my life; I wore beautiful gowns; I felt beautiful. I have a few more bridal appointments this week and I can agonize over style, fabric, shape and detail for hours on end. No gimpy hip can hijack my bridal moment.

Wrong Sara

This shouldn't be me. I shouldn't be here. Maybe they have the wrong Sara Ross? The Sara Ross sitting in the Pre-Admission Clinic waiting room should be old and decrepit. I fit neither of those descriptors: I shouldn't be here, in this hospital, waiting for an anesthesiology consult.

A heavy-set lady lumbers into the waiting room shortly after I arrive. She limps painfully and wheezes short, rattling breaths. She can't attract the unit clerk's attention - the unit clerk is sitting in the back room, prattling on about her new roller blades - and the limping woman collapses into a chair in defeat, her girth threatening to tip the small chair. "I can't stand for any longer," she whines in pitiful tones: "it's not even the knees, it's the sciatica today." I avoid eye contact. I cannot muster any sympathy; I don't want to bond with her, one sick patient conspiring with another.

Soon the nurse leads me into a small exam room, takes my blood pressure and asks all the routine screening questions. My vitals are perfect and I have no surgical risks. I am a healthy young woman - but there she is, typing in a medical chart that has my name written on it. She is the nurse. I am the patient.

She leaves the door ajar while I wait for the doctor. Other patients plod slowly past my room and I hear snippets of conversation: yes, I'm wearing the sleep mask at night; yeah, the new pace-maker is working all right; my blood pressure has been pretty good lately. Smokers, diabetics, seniors, the obese: every high risk patient is here. And me. We are all waiting to see the doctors who have started their rounds an hour late.

When the anesthesiologist breezes into see me, he looks mildly puzzled. After going through my history he concedes, very kindly, that bad luck has brought me here. He tells me that I am a young, healthy whipper-snapper; the odds are in my favor; they'll manage my pain and in a few years we can look back on this whole thing and laugh. Don't worry.

I can't stop worrying, though. It's one of those days where it's hard to gather enough damned energy to be optimistic and brave. At the end of the day I am a patient, and that's really, really tough for me to deal with. But my mom and sister-in-law let me cry in public, give me a hug and buy me a latte. Dan makes me a great dinner. And in a gesture of sublime animal intuition, Marvin gave me his most selective demonstration of love: my first kiss on the eyelid.

10 Cardinal Rules for Surviving Disability

1) Become really invested in your cats. I recommend at least two. Get to know their sleeping patterns, prime cuddle times, and favorite hangout locations. Harness their purrs because they have healing powers. (Science actually says so). Other pets, like dogs, are ok too. My brother has a little Chihuahua that loves snuggling all the time and is extremely portable.

 My little Gizmo; my other man; my fatty.

Marvin didn't initially like me that much. I was persistent and forced my love onto him. Now we snuggle. Marvin enjoys sewing.

 

2) Leave the house daily. This is a lofty goal and often proves unattainable. But it is nice to leave the house. I go to the same Starbucks a couple of times a week, and I've created imaginary relationships with the Baristas who work there. It's kind of like visiting friends, but not really.

 

3) TREAT YOURSELF!



Once a week I treat myself to something special: new nailpolish, a book, a massage (RNs, you can get a prescription and get 30 bucks back!) It makes you feel, in the words of L'Oreal, worth it.

 

4) Create a reading goal. I've always wanted to read more Charles Dickens, so I tackled The Old Curiosity Shop, A Tale of Two Cities and The Mayor of Casterbridge (actually a Thomas Hardy novel). You feel erudite, you learn new words, and you get more naps. Next up: Nicolas Nickleby.

 

5) No day-time television, including anything PVR'd or Netflix. This rule is hard but it's a cruel world and cultivating discipline is important.

 

6) Shower every day. Put on clothes every day. This can happen as late in the day as you want, but hygiene is important.

 

7) Hobby Hobby Hobby! I make quilts. For example:



This is my recovery quilt for after surgery. Helpful for building my cat relationships and staying warm while reading or performing hobbies. See how many rules are interconnected?

Be creative with your hobbies! When my brother lived in Brampton, he started a cat photography blog. There's knitting, making jewelry, calligraphy, scrapbooking, meditation, language learning... All sorts of things to do that don't require standing. (More masculine activities are out there, I just don't do any).

 

8) Cultivate friendships. I talk more frequently with close friends and really value my friends who find the time to write me an email, send me a text, go for a coffee.

 

9) Use the internet with discretion. This blog has been a great way to re-connect with old friends and meet other people who have my condition, but I find myself getting a little caught up on it. Spending hours planning your dream wedding, reading about every hip dysplasia surgery ever performed, or too much pinning/Facebook/Instagram/Reddit/website of choice leaves you disconnected from the real world and a little bit lonelier.

 

10) Put lipstick on that pig. Once a week, wear pants that don't have an elastic waistband. Put on a colorful shirt. Remind the world that you still got it.

 

 

Disability Days

Choosing to go on disability was one of the hardest decisions I've ever had to make. Despite having a preceptor student and helpful, considerate co-workers, I just could not keep up with the walking needed for my job. Every day the walk from the parking lot to the unit felt ten steps longer, and hauling myself out of a chair to answer a call bell took increasing amount of effort. Moreover, I did not have the concentration I needed to make it through the 7.75 hours in my shift. I focused on: when can I take more Tylenol, where can I position myself for minimal walking, how can I get my patients to stop asking why I am using a crutch, what should I do with my crutch when I enter an isolation room...

I was forced to call in sick more frequently, and I hate calling in sick. I hate abandoning my co-workers and leaving them short-shifted. One day I had to leave work early because of pain. On the drive home the decision hit me: it was time to go on disability. The decision came both as a relief and a heart-break. I used up my sick days, filled in the necessary paperwork, and officially began my life as a person with a disability at the end of January, two months before I found out my surgery date.

The suddenness of my transition from full-time work to full-time waiting for surgery was, and continues to be, incredibly tough. I really love my job. I am really good at my job. No one can wrangle a demented person into bed like I can! There is a reason I have the nickname 'dementia whisperer!' I take a lot of pride in the way I pour myself into my work, and I (usually) genuinely enjoy patient contact.  I miss feeling like I get to make someone's day better - to lose that sense of purpose and validation is devastating. In short, I miss my job and the human interactions I'm privileged to.

Actually, being disabled is much more difficult than I thought it would be. Initially I thought- so what if I can't walk, I can still do things. But think about something like a trip to the mall and the number of steps it requires: first, walk from the car to mall entrance. Next, go to two of your favourite stores which happen to be on opposite sides of the mall. Walk the length of the mall twice. Take a bathroom break and walk up to the bathroom holding your heavy parcel in your non-crutch hand. Finally, make the long walk back to your car. Simple outings require planning and lots of energy.

One thing I really like doing is going out for coffee. It's a nice, simple way to get a change of scenery, but it's somewhat of an ordeal. First of all I have to secure a seat, and then I have to find a good place to position my crutch. It always falls over and makes a loud bang. Always. And it catches on other peoples' backpacks and jackets easily, too. One time a man accidentally knocked it over and he was so horrified at himself that he literally sprinted away from me. Leaving the coffee shop is probably the most mortifying part of all my outings: in one hand I have my crutch and in the other hand I hold my purse, a hot beverage, and my bag of activities. I have to pull the door open with my crutch hand while dangling my crutch from my forearm, and then wedge my body into the door to prop it open - then I squeeze my limping bad side through the door and try to escape the door before it closes on my crutch. Very awkward.

About a month ago Dan and I rented a wheelchair from Blue Cross so I could do some longer excursions and "walks" outside. It's so nice to go outside after a long winter, but being pushed by someone else almost feels like defeat; it is the ultimate surrender of all my physical independence. Every look I receive is mingled with surprise (at my age) and pity. Wow: I am pitiable. What a very weird way to view myself.

My disability days have taught me a lot about the challenges so many people with visible and invisible disabilities face. If I didn't have Dan or nearby family, how would I shovel the sidewalk? What would I eat and who would cook it? How would my summer tires get out of the garage and into my car? How would I vacuum, load laundry into the dryer, or even get out of the bathtub on a really sore day? I'm lucky because my disability has an end date in sight, and for that I am grateful.

Surgery Prep Package!

I received my pre-admission Patient Instructions and blood work requisitions in the mail; it's definitely the worst package I've ever opened.

 

Firstly, no glitter hidden in the envelop. No smiley faces or encouraging idioms or pictures of people climbing mountains. In short: no inspiration and no aesthetic value. It's like the pre-admission people know that you're terrified and upset and they feel really awkward about it, so they try to maintain their distance by offering really helpful advice:

• Bring change for the payphone. Really? People regularly use those?
• Coughing instructions and leg exercises to prevent post-operative pneumonia. Pneumonia wasn't what I was worried about but maybe now I should be? Am I supposed to start practicing my ankle roles?
• How to treat constipation. Hello lax-a-day.
• Don't drive a boat for 24 hours after your surgery.  And no alcohol 24 hours after your surgery. DAMN.

I also got a yellow bracelet. I'll wear it after I get my blood work until my surgery so I will be ready to get a blood transfusion. Oh, and my pamphlet on analgesia only mentioned that death was a rare complication twice.

 

All set for surgery!

This Is Your Brain On Drugs

I've never been into drug culture. You are shocked. Well, I've never been cool enough to be initiated into drug culture - hard drugs don't circulate in the Calgary choral scene. The one time I did successfully imbibe pot was a total disaster: I was paranoid, sick, and probably would have chosen death over ever using pot again. Blackout drunk has never appealed to me either: I don't want to get out of control or do something stupid because I'll never live down my siblings' teasing. I wasn't, therefore, really looking forward to trying out one of the major drug categories: narcotics.

Until January, Tylenol and Advil had been the only analgesics I'd ever used. Every time I took Advil I was convinced I'd immediately go into kidney failure, be roped into a lifetime of dialysis, force my family members to take me off dialysis and then endure a slow painful death. (That, by the way, is the kind of impression Renal patients will make on you as a nurse). However, I was in more and more pain every day. I couldn't get in to see my GP for about a month, so Dan and I decided to go to the Canmore ER on our romantic weekend away. That actually ended up being the day that Dan proposed, but that's another story. I've previously mentioned that I'm a crier - I cry especially when talking about anything emotional or upsetting like pain and what it does to your thoughts, your feelings and your body. I cried to the triage nurse, stating that I felt bad for using valuable ER time for an issue I knew could be treated in a subacute facility. I'm grateful that she cut off my apologies by saying: this is an emergency for you and you deserve to be here. Her words validated my pain and dispelled the feeling I'd harbored that other people saw me as attention-seeking, fake, or not needing of serious medical care.

Anyways, by the time the ER doctor came to see me, I'd calmed down; his presence immediately triggered another bout of crying. Crying is, by the way, a great tactic for getting male doctors to listen to you. This particular physician had never heard of hip dysplasia in adults or PAO surgeries. He conceded that my condition sounded painful and wrote me a script for codeine and a note that said: This lady has a medical condition that precludes her from being on her feet all day.

When this lady took her first codeine dose, she got a little giggly. In my mind's eye I floated through our house like a butterfly. That wore off shortly after, which is a real shame because I do make a beautiful butterfly. Besides, the codeine didn't help with my pain. Next, my GP gave me a short-acting morphine to try, which did provide a lot of pain relief at first. I soon had to start taking it more and more often; I'd wear a watch so I'd know when I could take my next dose, and time all my activities around when I would be most pain-free. Then I tried taking a long-acting morphine at morning and night, with breakthrough short-acting morphine as needed, which provided consistency so I didn't have as many peaks and valleys. I'm not waking up from aching at three in the morning.

It's funny: when people hear I'm taking narcotics, their inner bro lingo comes out. Sweet Sara, you must get high. Or people will say in clipped tones: Oh, so you're an addict now. (Actually, my grandmother's the only person who has said that to my face; again, another story for another time). Misconceptions around pain medications and addictions drive me crazy: when you have pain, narcotics work to treat that pain. Taking pain medications for pain doesn't make you weak or an addict. Most people do not become medication dependent for the rest of their lives: that's a misconception stemming from the minority of cases. I learned this as a nurse, but after having quite a few patients who call on the hour every hour for their fentanyl/dilaudid/Percocet/magic combo, I became a little biased; maybe they like their painkillers just  a little too much. However I've learned about pain. No one has the right to judge someone else's pain or how they manage that pain.

Sometimes if I take a pill on an empty stomach I feel a little spacey, planet beautiful butterfly looms closer, and I feel a little dizzy. The first time I immediately followed morphine with a glass of wine was a bit of a trip - the most delightful birthday party for my grandmother that I've ever attended. Otherwise I've never had a "high" side effect. I'm naturally absent-minded and with morphine-brain I lose more things all of the time: keys, knitting needles, scissors, pens. What's really irritating is that Dan never loses anything and he gets to be smug about finding my misplaced items. The morphine on my nervous system plus not having to discipline my brain through regular work or critical thinking leaves my mind feeling a little porous, a little more vacuous than it used to be.

I haven't even begun trying any of the really big gun analgesics. I've never been "drugged up" from a major surgery. I can imagine it'll be more nauseating and way more fun than pot.

There Are Dozens Of Us!

 

 

When I was first diagnosed with Congenital Hip Dysplasia, I did not understand any of the medical jargon coming out of the surgeon-fellow's mouth. He did have a thick accent, but still: I'm a nurse and I had no idea that hip issues beyond: it's arthritic, you should probably get a new one, even existed. Like any health professional, I turned to Wikipedia and Google for answers. It seemed that most people with hip dysplasia were babies in severe looking straps and contraptions, dogs, or patients taking part of a British study conducted in the 1970s. As I am neither an elderly Brit, a dog nor a baby, I'll give a fairly untechnical run-down on what this condition is. Join me! Let's get hip to dysplasia!

 

My symptoms started manifesting with continuous pain in my left hip joint that radiated into the groin that didn't get better with ice, heat, or physio. It's a dull, always-there pain that occasionally gives me intense jolts of sharp pain if I'm doing too much, or just for fun. My hip also makes a sound particular to my condition: a "clunk." And yes, "clunk" is what the Ortho surgeons say. It's louder than a cracking or popping joint; it sounds like bones are shifting around in there. When I clunk, elderly deaf patients look up in disgust, physios say "That isn't a good sound," and Dan will shout out "Ooh, good one!" from the next room. The last symptom I developed was a limp that's especially pronounced when I'm fatigued.

 

To review, our symptoms are: non-specific pain, clunk, limp. I'm not a doctor, but that doesn't scream "Diagnose Me!"

 

So I had X-rays, about four ultrasounds, and an MRI, and all that had been diagnosed was a cyst possibly from a labral tear. When Dr. Johnston saw me he did X-rays where I pointed my feet in funny angles. One of the angles they measure in your hip is supposed to be at 25 degrees. My bad hip was below 20 degrees and the right hip was hanging in there at 21 degrees. Basically, the head of the femur (the ball) doesn't fit into the acetabulum (the socket) very nicely.

A a normal hip is pictured on the left, and a gimpy hip on the right. See how that isn't a very good joint connection? There's some roominess around the head of the femur, and the socket is fairly shallow and open? When the joint is aligned like that it kinda runs like a bike or a car with a flat tire: it doesn't glide smoothly but "kA-chunks" and the labrum and cartilage get chewed up. That's why I have a cyst. Eventually the cartilage gets worn right out and bone rubs on bone with every step. That's why my hip hurts and why I have some Osteoarthritis. Eventually the joint gets so arthritic that a hip replacement is needed, or you stay lame. Some websites state that lameness is a viable treatment alternative. I disagree.

So why don't they just replace the joint? It's a way faster, easier surgery. The thing is, I'm young, so I'd probably burn through at least three fake hips in my lifetime. The theory is that by preserving your joint, you're possibly preventing the need for a joint replacement. I do have a genetic predisposition to arthritis (thanks Mom!) but after my surgery, a hip replacement will be a breeze. I mean, I'll have a walker and a raised toilet seat already. That's also why I need to get my other hip done in a year's time. It isn't painful now, but eventually the joint will wear down and I'll be lame all over again.

Naturally, your next question is: what is my surgery all about? It's called a triple periacetabular osteotomy (or PAO). It's a long surgery - a whole day of OR time, which is why Dr. Johnston can do only one a month. He will open me up from above the hip bone down into the groin and break my acetabulum in three places. The joint is basically remodeled under X-ray so every thing is correctly aligned. Then the acetabulum is pinned together with three monster screws. Next, they will reattach all those nerves and muscles they had to cut out of the way and staple me back up. (Side note: that's why pre-physio is discouraged: more muscle to cut through. Ew). (Second side note: since it's a rare and crazy surgery, people like to watch for fun and learning. Extra ew).

Dr. Johnston likes to remove the screws after a year. If the cyst I have doesn't naturally heal after the joint is working properly, Dr. Johnston will just scope it out. Day surgery, no problem!

My mom really wants everyone to know that she wasn't a negligent mother: I was screened for dysplasia as a babe. However our current screening method isn't 100% effective. According to a Swiss study the only super effective way to screen for this condition is via ultrasound. When babies are diagnosed they are either put in boards, swaddled tight or have a PAO. But since baby cartilage is pretty flexible, the hip will often splay again, so some people end up having multiple PAO surgeries as babies and adults.

There are only dozens of us. Hopefully with that rundown you can understand the condition and procedure a little more clearly. I feel very un-academic for not citing my sources, but I found this to be a great website:
http://hipdysplasia.org/



The Onus of Being a Burden; Or, the Art of Self-Pity

I am, according to the actual definition, lame. As such it's pretty easy to occasionally just dissolve into a pool of self-pity. I must confess that the process of feeling utterly wretched can actually be a little bit fun. Follow this thought pattern: I hurt all the time. I can't sleep because I hurt too much. I'm cranky because I can't sleep and I hurt too much. No one wants to hang out with a cranky pants. I have no friends and they wouldn't want to hang out with me anyways because I can't do anything fun. I can't do anything. Strangers look at me funny- all they see is my cane that I keep dropping. God I'm so clumsy. I can't do anything around the house. I'm such a burden to Dan: he has to do everything and he didn't ask for that. I create so much work for other people. I'm a nuisance, a bother and just a giant fun-sucking waste of space. I am... (melodramatic pause and large blow into Kleenex for maximum pathetic effect) A BURDEN.


(The obligatory Pilgrim's Progress "I have a heavy burden" reference for all you Menno Simons grads out there. Just to clarify I'm not poor Christian- I'm the angry grey blob).

See? Isn't that downwards melodramatic spiral just a tad gratifying? Who doesn't like unleashing their inner drama student? It's kind of like when you get to that sloppy, teary drunk phase at the end of a long night, except no one is able to call you out on your bad behavior because you're lame!

However, it's surprising how quickly feeling like a burden morphs into feeling like an asshole. One weekend when I was feeling particularly miserable, Dan and I saw The Dallas Buyers Club. Instead of being inspired, I felt like a jerk: there's Matthew, dying of AIDS while accomplishing something really good; and then there's me, waiting for a surgery because I have a very treatable, non-life threatening condition.  Plus I'm whining way more than Matthew. I am an asshole. Later I saw 12 Years a Slave. God, I'm the worst person ever. Then I started thinking of the horrible lives of all my dialysis-bound Renal patients and, if you're trading congenital illnesses, mine is a pretty good one to have.

See? Feeling like a burden = feeling like a selfish asshole = feeling like a selfish jerk of a self-loathing burden.

I think all of my self-pity really stemmed from the fact that I didn't want to burden people around me with my grief. (I was saving all my burden issues for Dan, which I knew wasn't fair, and which I knew just made me the absolute worst). I needed to be "fine" for most people because I didn't want to be seen as weak or pathetic. I may cry a lot, but I'm Sara Ross! I get stuff done! I keep my shit in order! (at least in public). Letting people know how I felt wasn't an option. Conversely the more I protected myself with being Fine, the more depleted I because.

Needless to say this "I'm a burden/asshole/but I'm Fine" mentality wasn't very healthy. I've battled depression for a few years and I began to slide deeper and deeper into a bad place. However, I'm very proud of the fact that I respected my intuition, and I asked for help. And I got help. I got help from Dan, my brother, my friends, the doctor, a counsellor, my cats and kindly strangers holding the door open for me. I developed new strategies to process all these feelings surrounding my hip, and I've worked really hard to erase that "burden" mentality; it may be true that I can't do a lot of physical things but I'm not totally useless. Dan and my mother tell me so. When I'm not dwelling on how sorry I feel for myself, I have a lot of energy to appreciate all that makes life amazing and to concentrate on what I can do. Like make kick-ass baby quilts and wicked embroidery projects. And, when people ask about my hip and how I'm doing, I'm more honest: I say I don't want to talk about it or I say it sucks.

Most days I remain emotionally afloat and I'm okay with being lame, and I stay far away from that pool of self-pity. But when I need to, I have a good cathartic cry, feel the slightest bit pathetic, and then I carry on with my day.

from getting a Diagnosis to getting a Date

I've always prided myself on achieving extreme goals. By age 20, I had finished an Honors degree (with distinction) in English and an A.R.C.T. in Speech Arts and Drama. By age 23, I had sailed around the South Pacific in a wooden sailboat (without showers) for eight months, ran three full marathons and finished the fabled Ironman Canada race: 3.8 km swim, 180 km bike ride, and 44 km run in the blistering Okanogan heat. A couple years later I was working fulltime as a Registered Nurse, skiing a lot and trying out Olympic Weight Lifting as my next extreme hobby.

My body started rebelling against me March of 2013. My left hip had always been a little weak and would get a little a sore with lots of activity, but it started getting worse. 12 hours shifts at work would leave me in tears; running was agony; on a family trip to New York in April walking through museums caused tears and my hip began to ache at night.  I went to physio and saw a sports doctor and they couldn't figure out exactly what was wrong with me. An MRI showed that I had a cyst on my hip. Weird, but treatable: a radiologist just stuck a needle down into my joint and tried to drain it but the fluid in there was too "goopy."

The stupid hip deteriorated quickly.  I was referred to an Orthopedic Surgeon: getting groceries was the farthest distance I could walk. I relied heavily on my nursing student to get through the day at work. My physician wrote a letter of urgency to the Surgeon's Office. Finally, on November 19th, I had my appointment. The surgeon's student told me, through a thick accent and with many hand gestures, that what I had was "very, very bad." I would have a "big operation" and I "would not walk" for several months. I cried and flustered the poor man. He scurried off to find Dr. Johnston and my sister-in-law hugged me and helped me get all of the snot off of my face.

My curly haired surgeon came into the room and told me that I had CONGENITAL HIP DYSPLASIA, a fairly uncommon condition. He would have to cut me open from above the hip bone down to my groin, cut through all my muscles and break my hip bone in three places. Then, he would rotate the hip socket and put the head of my femur back to where it should be, pin my hip bone back in three places, and stitch me back up. Oh, I wouldn't be able to walk for about six months afterwards, and my GP could deal with  my current pain and stuff, but he was really good at his job. Oh, a year afterwards he would do the same thing to my right hip. And yeah, I probably wouldn't be able to do any of those things that I loved like running, skiing, etcetera for a long time.

I cried some more. And told my boyfriend and cried. And told my mom and dad and cried. And told my friends and cried. And told my bosses and cried. And journalled about it and cried. I think my worst moment came when I looked up books on my hip condition on Amazon and Amazon kindly suggested I buy a raised toilet seat. I cried.

I stopped crying halfway through December. Life went on. My boyfriend and I bought a house and he became my fiancé. But my pain continued to worsen: I had to go off of work on disability at the beginning of February; my Occupational Therapist got me a nifty forearm crutch/cane to help offload weight from my bad hip; and I had to go on stronger and stronger drugs to be able to sleep at night. The extreme luxury of buying my own groceries was a thing of the past as my ability to walk decreased further and further.

Now I have a surgery date: May 7. I am terrified, relieved, sad, anxious, scared, and every kind of emotion you could imagine. I started this blog to let everyone know about my recovery. Maybe it can help other people adjust to life with their own disabilities, pain, and obscure medical conditions that are usually found in purebred dogs. I have spent three solid months reading, knitting, quilting, embroidery, wedding planning, chatting on the phone and anything else that doesn't involve standing or walking. I will spend the next six months in a hospital, using a walker, and learning how to walk all over again. Just another extreme hobby for me to add to my list.