#scheuermanns

[e8ngorg]

I really wish doctors would stop saying shit like"if your spine isn't broke, don't fix it" when you ask for surgery

[e8ngorg]

I lost my job due to my fucked up spine and now I’m miserable, moneyless and in agony. I keep being told not to let my conditions define me. Not to let them stop me and to just try. Every time I try I fail. I can’t do things like normal people. I can’t bend down, I can’t stand for hours on end serving people, or stock shelves with heavy items. How the fuck do people manage? How am I supposed to find a purpose in life when I can’t do anything worth hiring for?

[e8ngorg]

I went to the doctor and it didn't exactly go as well as I hoped. The second I mentioned wanting surgery he started trying to deter me again. He said if I want a referral down to RNOH I need to go back to see the surgeon I saw originally and ask him to refer me which I know he won't do as he was absolutely awful to me. He kept saying stuff like "if your spine isn't broke, don't fix it." We've decided to go private for a referral but he wasn't clear if that was back to the original surgeon or straight to RNOH. Ugh. Update: the hospital rang and asked why we wanted to go private so we explained. The way the secretary talked made it seem like I was wasting my time even wanting to see another surgeon. She said that private would be about £650 for our first consultation and that they aren't taking private patients at the moment anyway so we decided to go back to the NHS, so fuck knows how long it will be until I actually see someone.

[livingwithscheuermanns]

Doctor visit day

It’s high anxiety day today… I’m at the doctors office waiting to chat about what activities I am allowed to do. I know, I know… Sounds silly right? Well it stemmed from me taking some pics with a photographer (my Christmas present) coupled with me making soup on weekends to help pay the bills…. I had to walk two blocks to a bus stop, take a 20 mins ride to downtown, walk another block, wait 5 mins, transfer to the 2nd bus for a 8 min ride and then walk 2 more blocks to my clinic. In total, walked 5 blocks (on pavement!! No ice and its march in Canada… Almost unheard of!) and spent 28 mins on the bus, with a seat. This shouldn’t cause pain to anyone right? Not me, I am in so much pain, muscle pain across my shoulders, then dense bone pain and electrical pain from my neck to my ass. This is fucken stupid. I shouldn’t be this hurt! The Pain is at a 7, I feel nauseous and if I move too fast, I get vertigo.

I am waiting for my doc… I shall continue this post after we chat. Stay tuned!

And we're done! So that was much less scary that I thought. My doctor agrees with me and supports my current inability to work. He also showed me the letter he received... Unreal! Something along the lines of I do business on social media, therefore I should be facilitating a return to work. I audibly laughed, modelling you say? Because I take pretty pics and hashtag them with altmodel and plusmodel etc.... for 1) it’s not paid... for 2) it was my christmas gift (or it’s an iphone pic i take myself) and for 3) it’s not very hard on my back to stand for 5 mins and look pretty... in fact, because it’s slow, deliberate movements, it wasn’t that bad for my back! The bus ride there wasn’t so fun... but that was 10 mins on the bus and 1 block walk... my trip today was longer. Can I also just mention how beneficial it was for my sanity? Having 1 hour to do something nice for myself, something I LOVE?! Is that so wrong? My soup business was the other concern, I closed up shop so they couldn’t use that against me which makes me sad... this was my 2nd season, I started it to help pay for our wedding and I was continuing it for the same reason. Lately, things have been tight so it was buying us groceries. *le sigh* Why someone felt the need to interject themselves into my life this much is beyond me... why hurt someone just to hurt them? Are you jealous? Please don’t be, I’d give anything to be able to go to work again, have a relatively “normal” (whatever that means haha) life again! I want to go for a walk with my husband and our dog... right now I walk a block with our dog and my pain level goes from 4 to 8 and I have to turn around and come home. Silly! 2 years ago I was walking marathons. come onnnnnnnnnnnnnn! *throws rocks at life* 

We talked pain management today... my doctor’s fear was the same as mine, if we starts on pills now to mask the pain, I will become dependant on them. My family history is riddled with addiction, I can’t take that chance. I also feel like I don’t want to mask the pain, I want to MANAGE the pain. I have realistic expectations, it’s not like I’m ignorant to the fact that I’ll never be pain free. Hell, I’ve never BEEN pain free! My entire life, I’ve been in pain. I just pushed through it and didn’t think much of it. I thought all kids had back pain. I thought everyone couldn’t stand still and had to sway side to side because their back felt better that way... or what about sleeping on your back? Laying down on your back? Unless I’m in something almost as fluffy as a cloud, that has never been possible. It’s weird, the more I think about my condition and the pain I am in, the more my entire life makes sense. 

So here I sit, in my chair icing. I’ve added to this entry four separate times... each time I had to sit and rest, I added more. My husband and I spent some time singing this evening, it helps me take my mind off being in limbo. :-) To keep sane, I think about what’s ahead, the positives. We are moving... a little unsure as to when... and the reasons why aren’t the best... BUT looking at the positives, it’s into a beautiful new suite, brand new, with main floor laundry, a fenced in yard for our furbaby and it’s in one of my favourite parts of the city. It’s also with one of my favourite people. I so can’t wait to move, the act of moving is terrifying to me, normally I’m a work horse, lift everything I can, work until the job is done... I carried a 2lb block of yeast at costco the other day for 10 mins and had to switch arms after each couple mins because the pain was almost unbearable... 2 fucking lbs?! *le sigh* I’m so thankful to have amazing family and friends, I don’t know what we would do without them. <3 Love you guys so much! 

[livingwithscheuermanns]

Hello!

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! 

[girlfromthe-subway]

I love being woken up by my back / hip / knee pain!! Its great (not really tho, everything hurts and nothing helps)

[girlfromthe-subway]

I sit in the handicap section at the movies bc otherwise my legs burn and my back burns and I can barely move w/o sharp pains. It affects my whole back for the next few days. I hate when people walk in, see that I’m a teenager in the handicap section and glare at me. Like there are things called invisible disabilities. Stop making me feel weird

[girlfromthe-subway]

Every person practically ever when I tell them my illnesses: have you tried dieting and exercise? (-:

Me: no that's never occurred to me ever, you just healed me