Why hello there! My name is Amber and I have Scheuermann’s disease. I’m guessing if you’d found this blog, you probably already know what this is... Buuuuuuut in the off chance that you’ve magically stumbled upon this, I’ll tell you about it!
Scheuermann’s disease is a spinal deformity, a form of childhood osteoperosis. It causes the spine to be curved, creating a hunched appearance. The vertebrae are anteriorly wedged... meaning instead of being square, they are skinny in the front and fat in the back.... like a super sexy door wedge! ;-)
I was diagnosed with this in 2013 after 2 years of complaints of back pain... I had an MRI to confirm the diagnosis... Scheuermann’s disease... a severe case. Lovely!
The diagnosis made me think back, back to when I was a child. I remember being 8 years old, in grade 3, wanting to be in the gymnastics club like all the other girls. Do a summersault they said, it’s easy they said... You know, it was never easy for me and I didn’t know why until now. The first part of the roll went perfect, until my mid-lower back would slap the ground.. SLAP! roll, SLAP!, roll SLAP! Every damn time! Now it all makes sense.
Mum tells me I was tested for scoliosis (it runs in the family) at age 6 but they found nothing... I’m not sure why my doctor didn’t do more testing, it was obvious to us all that my spine was curved. Mum was told that if I lost some weight, my spine would straighten up. Now ok, I know that may sound mean to some but here’s a little background. I was a super happy, blond hair, blue eyed, rolly pollie cutie patootie! My whole life I’ve been plus sized, by age 12 when my appendix exploded (we’ll talk about that in another post) I was 111Kg or about 250lbs. My whole life, I don’t remember the scale ever saying anything other than 260-280. So ok... I can understand why they would say lose weight and it should straighten up.... logically that should work right?? WRONG! Fast forward to age 26, I’ve quit smoking and gained another 30 lbs. I”m now 310, my heaviest weight. I go to the doctor after a very embarrassing attempt to walk to a bus stop 1 block away but failing due to knee pain (turned out to be bursitis). This sparked my health journey, my self discovery journey and what turned out to be a whole new life adventure. 2 years of eating right, working out daily, walking part marathons, mud hero and colour me rad... 100 lbs lost but woah what is this spinal pain? Why am I so hurt that I can’t breathe? Why is the pain so bad it’s making me nauseous?
Turns out I was doing everything wrong... my 350lbs leg press I was very proud of... it put so much pressure on my spine that I felt a crack. The 80lb deadlifts, the 50lb chest press, the 30lb flies... it all put too much pressure on my spine and 5 months before my wedding (also the reason I was going so hard... as any bride does right???) the pain became too unbearable and all gym activity had to stop. I couldn’t walk more than 30 mins without pain, making it through my work day, even at a sit/stand work station was becoming too painful. This electrical pain started running from my neck down to the top of my hips, straight down my spine. The muscle pain was unreal, not to mention the muscle spasms. Have you ever had a muscle twitch so hard it made you throw up from the pain? Le fun? C’est pas sa. ... So in my quest to be healthy, to be a beautiful bride, to better myself... I ruined myself. I did all of the things wrong for scheueremann’s disease. *cries* Never in my life have I felt so disappointed... disappointed in myself and about my situation. How could I have been so dumb? I knew I was in pain but I pushed through.... It’s just muscle pain I thought... Well I was wrong and holy moly am I paying the price now.
Again fast forward to 6 months post wedding, we have been living in a pet friendly building for 8 months, we have a beautiful 7 month old furbaby, and we get bedbugs. AHHHHHHH!!!!! Fucken bedbugs! Have you ever had them? Neither my husband or I had ever had them before... 2 months prior, a new tenant moved into the suit above ours and brought in infected furniture from their storage unit... the building didn’t treat properly and well guess who’s suit was affected?!?! We had to throw out our bed and until it could be replaced, had to sleep on and air mattress. All our possessions had to be thrown out, washed or cleaned...mattress/boxspring/bedframe, GONE... pillows, GONE.... part of the modular couch, GONE! You never know how much stuff you have until something like this happens, and it’s so much work to do it all. Even with help, it was a lot of work. All out clothes have to be kept in rubbermaid tubs because our dresser was also affected... that tub.. that darn clothing tub.. that was my downfall. I lifted the tub to move it and “AHHHCHOOO!” I sneezed before I realized and it was too late, my half bent over body, holding a tub full of my clothing, jerked so hard it sent my back into a muscle spasm and the electrical pain was so intense I’m surprised I didn’t pass out.
Since that “acute injury” my scheuermann’s is in such a bad flare up I can’t work. Hell, I can barely function some days. My daily pain level is never under a 4, I wake up and have to assess how hurt I am that day, I do my stretching and hospital physiotherapy appointed exercises (round 1 of 4) before I even leave the bedroom to start my morning routine... a trip to the loo, then time to either take our furbaby outside or start the kettle for coffee... my hubby and I both have spinal conditions (his is spinal stenosis with a pinched nerve, still waiting on testing.... yay medical limbo! at least I’m not alone in this) so whomever is less hurt that day, takes the dog outside while the other starts the kettle and starts unloading the dishwasher.
Everything in our lives is different. Most young newlyweds are thinking of starting a family or adventuring together! Our adventures currently consist of walking carefully with the dog outside and attempting not to slip and fall on the icy parking lot and backlane, loving on our furbaby and singing... we always have our music... well most days anyway! I’ve learned on high pain days, I can’t sing because I can’t breathe deep enough, it puts too much pressure on my spine.
Don’t get me wrong... I’m not sitting here, complaining about everything... I mean it surely isn’t an ideal situation, in fact, it’s actually what I feared the most. Our family will struggle because of injury/illness and that’s something out of our control. However, I never want an to waste a learning opportunity so I feel like this is teaching us about patience. Patience with ourselves, learning our new boundaries and how to strengthen but not injure any further. Patience with others, most people don’t understand chronic pain and can be very ignorant and mean spirited. Patience with those attempting to heal us, each body is different, reacts differently to treatment, and in my case, most people aren’t even aware of my condition so to expect them to know how to fix it is absurd. As it was when I started my health journey, this will be trial and error. All I can do is try my best to heal myself, to stay positive and not let the depression that comes along with chronic pain to take over. It’s a very hard place to be emotionally when you are trying your best, but the world doesn’t believe you.
So my new friends, this is my world, welcome!
