Overdue Update on Surgery #5

I had surgery on September 2nd, and ended up spending almost a week in the hospital. There was a complication with the spinal and I developed a post-dural-puncture headache. I had to have a blood patch procedure done to fix that.

On my last day in the hospital, I woke up early. I finally felt relief from the headache, and for the first time since the surgery I had some energy. I started thinking about school and how all my friends were just starting their semesters and how much I wanted to go to school too. I thought about it for maybe an hour, and then I emailed my program co-ordinator asking if it was too late to register for some online classes. I ended up registering for three classes the day I got out of the hospital, two online, one in class that met twice a week. I couldn't walk and wouldn't be able to for 12 weeks, but I found a friend willing to drive me to my classes and I started the next day.

After leaving the hospital, I found I didnt need any of the prescription pain killers. I didnt even need tylenol most days. The pain that had been plaguing me for almost three years was suddenly gone. I was able to keep up with my classes no problem.

Now it's almost the end of the semester. I'm walking. I'm pain free. I'm passing my classes. I'm planning to go to school full time in January.

I started this blog because when I first broke my leg and ankle, I wanted to know what my recovery was going to look like. I looked for other people's blogs about their recoveries and found some. Everyone's experience was different. Some people were fine after a year, or even six months. I really hope no one ends up in a situation like mine with my years of recovery and multiple surgeries, but if you do have a long recovery ahead of you try not to worry. Lean on the people around you, they love you and want to help. Its not easy to be happy in a rough situation, but try and find the things that bring you joy and keep them in your life. Medicine is complicated and sometimes things don't work, but that doesn't mean nothing will.

Be hopeful. Be brave. Don't give up.

Here's the result of surgery #5

A photo posted by Julie Albers (@julie_albers) on Sep 23, 2016 at 7:48am PDT

Talk About It

This surgery coming up will put me in the hospital for four days. 

Six years ago, I was in inpatient in the psychiatric ward for almost three months as I recovered from a psychotic break so severe I didn't even know my own name. Part of me died from being locked up in there. I was mistreated, stripped, drugged, abused, and nobody did anything because who is going to believe the crazy girl? The french nurses yelled at me in a language I couldn't understand. My crying was treated with needles full of haloperidol injected into my leg while I fought the security guard to get away. Code White blaring on the intercom. My clothes: taken and replaced with a loose hospital gown, showing off my fresh bruises. I would find myself locked up in a cold concrete room with nothing but a bare mattress and a toilet. 

I begged my parents every day to get me out of there. And they tried. They wanted me transferred to a different hospital. They wanted me under a different doctor, but I was 18 so they had no legal right to dictate my medical treatment and the hospital knew it. The nurses hid thier mistakes by keeping me sedated and afraid. 

Think of it like this: there is a patient who is in severe mental health crisis. You can help her by comforting her, talking her down, and teaching healthy coping methods OR you can help yourself and shut her up with some haloperidol so you can get back to your mountain of paperwork because you are an overworked under-paid nurse. I got haloperidol. Every time. 

I was never a danger to anyone. I was never a danger to myself. I was a nuisance. I was noisy. 

Now every time I walk the halls of that hospital to and from my ortho appointments I am treated to vivid flashbacks, and even though I am floors away from the psych ward, I am afraid. I'm paranoid that someone will sense my anxiety and demand I return there to treat it. Every interaction with hospital staff has me on edge. Even though today was my fourth round of pre-op tests (for my fifth surgery) I stammered through answering thier questions, not trusting myself to know what would happen next and ready to flee at a moment's notice.

In the years since all this happened I have been in counselling. I've been told I have Complex PTSD. It takes constant effort to keep myself from feeling like everything I have will be taken away at any moment.

I'd rather be in school...

A photo posted by Julie Albers (@julie_albers) on Aug 24, 2016 at 1:06pm PDT

The Marathon

Surgery is coming up fast. A little too fast for my liking. I'm trying to squeeze as much as I can into the last little bit of summer. I've been to Montreal a few times, I did Bluesfest, I went camping, and I've even started cycling daily, anywhere from 5 to 7 kilometers. Next weekend I'm going to Peterborough and Toronto.

To prepare for surgery I decided I would make and freeze two months worth of food ahead of time. What an undertaking that was! It took a lot of planning and budgeting, but this past week I was able to get all the supplies and then I spent three days cooking it all. I spent under $300 and made 96 healthy meals. A lot of people have asked how I did this, so Ive typed up my recipes and master grocery list to share here.

300 dollars, 75 ingredients, 14 recipes, 3 days The meal prep marathon is over. Final count: 96 meals!!!!

A photo posted by Julie Albers (@julie_albers) on Aug 11, 2016 at 3:28pm PDT

CT Results

It could have gone one of three ways:
1- You're fine, no surgery needed
2- It's not so good, you might need surgery by next year, we'll keep an eye on it
3- It's bad, we should operate as soon as we can

It shouldn't be a surprise by now, but I got the third one.

The CT scan showed what the X-ray was hiding. While the fused bones connected around the edges, there is a gap between the bones on the inside, with no indication that they were fusing.

Imagine you have a bone, and its broken. You walk on it every day. There are three screws and some sliveres of bone growth holding it all together, but it's broken inside. That's what I've been walking on for the last four months.

I'm mad. Mad at my body for being so stubborn and not healing. Mad at God for thinking I should handle this. Mad at my health insurance, or lack thereof. I don't wanna hear any more platitudes. No more people saying "Stay positive" Stay positive about what?!? This sucks!! It's ruined my whole life! I'm not always a monster of negativity, but I need people to just let me feel my feelings, good or bad.

I'm not mad at my doctor. He's just as bummed about this as I am. He's not arrogant about it either. He truly wants to give me the best outcome possible.

It was a bad break. There's no blame, no faults. Everyone needs to stop suggesting that I sue the city or sue the hospital.

Bad news

A photo posted by Julie Albers (@julie_albers) on Jul 11, 2016 at 3:09pm PDT

"Breaking" News

I was riding my bike to physio and when I went to stop at the bike rack I kinda crashed and fell. I’ve been doing this thing since middle school where I dismount my bike while it's still going and ride the pedal like a scooter until I hop off and walk the last couple steps to the bike rack. Looks cool if I don't fall.
I fell.
I landed on my hands and knees pretty hard with my bike underneath me, my left hand getting twisted in the spokes of my wheel and my knees scraping the pavement. I was already late for my appointment and really embarrassed by my graceless fall, so I hurried in. Once I got settled in the clinic, I realized my left hand was throbbing really bad and swelling up. My physiotherapist took a look at it, icing it for a bit and then poking it while I cried. He said I needed x-rays.
 So after physio I went to the Emergency Room. As much as I hate hospitals, none of the clinics nearby had x-ray machines. Interestingly, this was not the same hospital where I went for my broken leg. The wait was forever and the anxiety made me wanna run home. The triage nurse called my wrist "gross". The x-ray tech apologised for making me cry. The doctor I saw said that I had fractured a teeny tiny bone in my wrist called the scaphoid, but she didn't know how bad. These kinds of fractures are really hard to see on x-ray until after they start healing. Based on my swelling, bruising, where my pain is, and how I fell, she was sure it was a scaphoid fracture.
I got sent to Ortho to have a splint put on my arm. I have to go back in two weeks for a check-up. Until then I'll have to make do with a useless left hand, but at least it's a perpetual thumbs up.

Fell off my bike. Fractured my wrist. 👍

A photo posted by Julie Albers (@julie_albers) on Jun 13, 2016 at 1:41pm PDT

Six Months Post-Fusion

Dr Steeves says he doesn't usually follow a patient this long (over two years now). I've met almost all of his med students because I'm here so often.
Anyways, I didn't hear what I wanted to hear at my appointment today. The pain I feel in the joint has not calmed down at all. Physio is helping with the tendonitis but my surgeon was skeptical about my x-rays. So he's sending me for a CT scan for a more detailed look at the bone growth, and if he's not happy with it then I'll need another surgery to revise the fusion. Fifth time's the charm. No?
Usually ortho surgeons like to wait a year before touching a fusion, but I'm not as healed as I should be for six months, and the doc said if there's a problem he would rather deal with it sooner.
Surgery would push back returning to school. I would need more physio. I've maxed out my physio for the year, and next year I'm off my parents insurance.
I'm frustrated. I'm not a whiner. I've pushed myself so hard to get through this. I work hard in physio. I wear proper shoes and take it easy when I've pushed too hard. I've tolerated pain for so long.
I just wanted to hear that it would all be over soon.

Everything is Awful

Being in a wheelchair makes me feel really isolated. School has started and I'm in new classes with new students. I'm finding it really hard to get to know the new people. I feel like they see the wheelchair first. Also being on a different level than them physically makes talking to people hard, and sometimes intimidating. Everyone towers over me. I feel small. I also feel like everyone watches me. I don't like that feeling. I'm in one of the larger sections of my program, there are 30 of us.
I got through the first week but it was so hard. I'm finding it really hard to concentrate in class. I'm constantly in pain. I'm always tired. By the time I get home from class, I'm so exhausted I fall asleep. I haven't gotten any homework done all week.
The Lyrica is messing with my mood. Known side effects include anxiety and depression: things I already struggle with but had under control. Had. Not anymore. I get anxious at school, and I feel so alone that I start to cry. I feel hopeless and overwhelmed.
I've thought about dropping out. My parents said they will support me no matter what I do. They know my health is more important than school.
I haven't decided what I'm going to do. I want to give it a bit more time, see if anything gets easier. I have until January 22nd to get a full tuition refund.
Basically, everything is terrible right now.

Screws and Back to School

Well this is what a fused ankle looks like. Its pretty screwed up! Haha! Dr. Steeves said he would do an isolated fuse so he didn't go through my fibula. Thats good because I'll have slightly more flexibility. All those little bits of metal are left over from previous surgeries, and are never coming out.

My pain is... interesting. Most of my discomfort is actualy in my foot as a result of nerve pain. I have one long incision and eight small ones, but I can't feel them, most of my foot and ankle are still numb. I do however, feel some very painful pins and needles once in a while.

I go back to school in a few days. I'm a little worried about it, I've only gone out three times since the surgery, and each time has been really hard and draining. Luckily I have a friend to drive me to school all semester, and in return, I got her a sweet reserved accessible parking spot on campus. But my schedule is heavy, and most days I'll be at the school for over 8 hours. It sounds a little overwhelming, but I just have to go for 15 weeks and then I get four months off!

Detox

I'm trying to get off the pain meds, but every time I get to about 12 hours off, I start feeling pretty bad: too warm, too cold, nauseous, sore, and really really irritable. I feel so crummy I end up re-starting the med. I've run out of my prescription and have begun to dig into the pills left over from my last surgery.
They are 325mg Tramadol pills, I was talking up to 12 pills a day. Got down to 6, one very 4 hours. I haven't taken any since 7am yesterday. It's 2:30 am now. I've been relying on Advil and the Lyrica for pain control. Now I just need something for withdrawal control.
I see my doctor in 3 days.

Late Night Ramblings

I sleep on a weird schedule. It's been over two weeks of being in bed, and taking narcotic pain meds that make me fuzzy and sleepy. I sleep for four hours, and then I'm up for four hours, sleep four, awake four...
I miss my life. I'm anxious to get back to it. Right now my family is out of town visiting my Grandma, and attending my cousins wedding. I wish I could have gone.
I'm also anxious to go back to school, but I feel like I need to get off the meds first. I tried a couple days ago but the pain got really bad.
I also wanna go back to physio. I wanna walk, I wanna run, I wanna play volleyball and dance with more than just my arms.
But for now I binge watch Netflix, play app games like Plague Inc and Neko Atsume, and have various people over to clean my house and feed me.
Had I know when I woke up on March 29th 2014 that I would break my leg and ankle in such a way that it would affect the next two years of my life... would I do anything different? Would it even have made a difference? Can fate be changed?

Christmas, Bed Rest, and Cats

The mug speaks the truth

My parents bought me a new mattress a couple months ago as an early Christmas present. I was really desperate for one; I wasn’t sleeping very well and was having back problems. I remember that after previous surgeries, my hips and back would hurt after only a few days in bed. I’ve been in this bed for over two weeks now and I’m still comfortable.

However staying in bed for this long is not as fun as it sounds. I was put on bed rest after my last hospital visit. I need to keep my leg above my heart to keep the swelling down. No one ever told me that bed rest would have side effects. I get heartburn, because I’m always lying down. I have heat rash all over my back. When I get up to go to the washroom, my leg swells up and hurts for about an hour.

I’m home alone now. My roommate is still out of town, but my sister comes over in the mornings to check on me and bring me food. Sometimes I have visitors. They always bring food.

December 24th vs December 29th

Christmas was good, I don’t remember much since I was heavily medicated, but my family took lots of pictures for me so I could remember. On Christmas Eve there was no snow still and it was 16 degrees Celsius out, it felt like a nice spring day. The grass was green and the sky was blue. I’ve had a green Christmas before, but it was still really cold like winter. This was strange. It didn’t last. On the December 29th there was a huge snowstorm. And it hasn’t really stopped snowing. So now it looks like a typical January out there.

Tramadol, Lyrica, and Advil

I have a week left until I see my surgeon again. A week and a half until the school semester starts. I keep trying to get off the narcotic pain meds, but every time I do within 12 hours I’m so uncomfortable I’m back on them. I really don’t want to be on them still when school starts, because they make my brain all fuzzy. I wouldn’t be able to get any work done. I’m looking forward to seeing my x-rays at my appointment. Dr. Steeves always makes sure I get to see them. He’s great like that, very informative and makes sure I know what’s going on. He’s the top rated orthopaedic surgeon in the city.

I don’t think I’d be able to get through bed rest if it wasn’t for Tesla. She’s my kitten. She’s a 10-month-old calico. I adopted her in May, and spent a lot of time with her, training her not to destroy things, not to chew on cables, or claw the couch. I got her accepted into a Pet Smart Charities grant for people on financial assistance, so she could be spayed and I only had a $20 co-pay. She is so well behaved, easily affectionate, hilariously vocal, and is ever so gentle. She has a lot of patience when my one-year-old niece is pulling her fur and squealing in her face. Tesla likes to cuddle with me all day. Both her and Jinx, my roommate’s cat, spend all their time on my bed or in my room. They only leave to go eat and use the litter box. Its like they know something is wrong with me.

I’m happy to have the cats, and I’m happy when friends come visit, but I cant wait to get out of this bed, get off these drugs, and get back to school and my life.

TTYL
Julie