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[livingwithscheuermanns]

Walking Medical Mistake

It’s 5am, I woke up angry and couldn’t get back to sleep. I can’t shake this anger towards the medical community. Friday I had an appointment with a specialist who was supposed to be helping me deal with chronic pain. After being kept waiting over an hour for my appointment and being called in once prematurely (my first appointment they made mistakes too, this doesn’t bode well in the confidence department for them) I come to find a chart hanging on the wall, it’s a chart of spinal diseases.... copyright 1984-1986... hmmmmm coincidence? The one disease missing from the chart... SCHEUERMANNS! I take note of this and when the doctor finally arrives, I make a joke about this chart being outdated and that scheuermanns isn’t listed. The response i was met with was unbelievable. The specialist sees nothing wrong with the chart as “nothing has changed since then”.... REALLY??? nothing has changed? so my disease doesn’t exist then? I don’t have chronic pain all day ever day, I don’t have searing pain in my spine after short activities like walking to the bathroom and/or showering. I must sleep so soundly and comfortably, I don’t have constant nausea, and I certainly don’t lose sensation to my legs. Nope, none of that must happen because scheuermanns doesn’t exist. 

Perhaps you are wondering WHY this makes me so bloody angry.... well... the truth is that my mum ASKED the doctor why my spine was curving when I was 7... she was told that I was too fat. Plain and simple. Lose weight and the spine will straighten. To satisfy my mums questions, they screened me for scoliosis and called it a day. “Don’t worry, your daughter will be fine, she’s just too fat”... Now if that in itself doesn’t anger you, how about being told the SAME thing, that you are just too fat and have bad posture from a SPECIALIST! 23 years later, telling me the SAME answer when in fact, I have been tested prior and indeed have scheuermanns. 

Riddle me this: How many people fought to the death that the world was flat???

I am a walking medical mistake. The doctors didn’t know what to look for and by the time they did (and only because I kept pressing for answers at age 26) it was too late. I have a severe spinal deformity that causes me increasingly horrible pain each and every day. The doctors don’t want to admit they were wrong, they also don’t want to admit they know NOTHING of this disease!!! GET EDUCATED THEN! This IS a real disease! You have NO RIGHT to tell me that I am not in pain, that there’s nothing wrong with me. YOU fucked up! The medical community fucked up and now I am the one who pays the price. 

I research every day on this disease, there isn’t much information out there which is one of the most disheartening parts of all of this. Of course the medical community has no idea about this disease, I am one of the few who have it! To be classified as having scheuermanns, you have to have both the kyphosis of the upper spine and lordosis of the lower spine. I have both, with prominent disfiguration. I also have schmorls nodes on my vertebrae, meaning that I have little boney nubbins on my spine where there shouldn’t be.  So combine that with vertebrae that are shaped like a door wedge instead of a square. Now imagine that the door wedges are formed into a C shape (my upper spine) and try to straighten those out... you’re running into a problem right? all the ends of the wide side are touching and the thin ends are pulled right apart right??? Now imagine that happening INSIDE my body each time I try to have “good posture”... I can’t even begin to tell you the pain it causes. 

*sigh* I am frustrated. 

[livingwithscheuermanns]

This is what I don't show the world, this is the saddened and broken face of chronic pain. Nobody prepares you for the emotional roller coaster that is every day, the fighting of pain, the proving to others that your pain is real... That you aren't just a lazy 30 year old who wants to stay home and not work. The educating of the 6 figure a year "professionals" on your condition because they have no clue what it is or how to treat it. The frustration of knowing that your weight loss journey, the one that was doctor recommended and approved, was part of your downfall. Knowing that your weight gain due to injury is being noticed and again you are that overweight, hunched back, weird woman who must ignore the ignorant stares. The disappointment when your specialist recommends 12 needles to the spine as treatment but that does nothing but exacerbate the pains. Being told that trial and error is all we can do for treatment, being kicked out of The hospital Physio program because there's nothing more they can do to help.... Being in medical and financial limbo, all within the first year of marriage. This is what I choose not to share with the world, not because I'm ashamed, but because we have enough negative around us, we certainly don't need to add mine to the pile. This is my reality. I smile because I refuse to live miserably! I laugh and joke because without that, I would crumble and cry. That is not a quality of life I want. So please, don't mistake my smiles and laughter for pain free fun living.... I smile through the pain, or I would never smile again.

[livingwithscheuermanns]

Post fall day 4

Woah does a fall ever take a lot out of you! I’ve fallen lots of times, I’m clumsy! lol Never have I felt like this though. I don’t think I’ve slept more than a few hours a night, I just can’t find a position that doesn’t hurt or strain something. I’ve been waking up to pain level 6 instead of my usual 4... that makes for a slow and sore start to the day. I’ve noticed my left leg going numb a few times a day, I haven’t noticed a pattern of use though. It happens randomly, after sitting or standing. The pain pathway is from the left side of my lower back along my butt cheek, through my hamstring, down through the left side of my knee, down my calve into the arch of my foot and out my first three toes starting at the baby toe. Has anyone else with SD had this happen before? This same pain pathway started 3-4 weeks prior to my fall, but was infrequent. I mentioned this to my family physician, we’ll see what he thinks on my next visit. As like all appointments of mine, most people have to take the time to digest all the information I give them... it’s a lot to take in all at once, I understand it. It makes for a long and arduous process for me... but I suppose that’s just my life lesson in patience right? Learning to have patience with others and myself. 

Something else I’ve noticed since my fall is how tired I am all day. It doesn’t seem to matter how much “sleep” I get, how much resting I try to do, how active I try to be, how much caffeine I ingest... nothing seems to make me feel awake or alert. From what I read, my body is healing so this is natural. 

Positivity time! I am currently blogging while enjoying the beautiful outside day, sunny with an light ocean blue sky and big fluffy white clouds. The dogs are running in the cool grass and I can hear kids playing happily in the distance... and my Five Finger Death Punch album keeping my company. ;-) It’s a fabulous day, so I’ll focus on that. 

What do other SD suffers do to fill their time while in a flare up? I do a fair amount of cooking, I find it’s a good activity for me because A) I need to eat, we all do! and who doesn’t love food? B) I can do it standing or sitting C) I can prep in stages so when I need to sit and ice, I can. D) I can work inside or outside so on nice days, I can still take advantage of the beautiful day, while doing something fun and productive. Finally, I just love to do it. I’ve loved to cook or bake since I was a child helping my Mum in the kitchen. 

Let me know what you like to do in your spare time. :) 

Cheers! 

[livingwithscheuermanns]

I fell... But got up.

So this is new, my left leg shuts off. Luckily I was only standing a few stairs up from the landing so the fall wasn't far... Painful but not far. It could have been worse. I am so sore and stiff since the fall.... Ugh. Nobody prepares you for that! I am angry that it happened, scared it'll happen again, and sore from it. Bah! Pain! More pain, what else is new. At least it's a new pain?! I am wondering if a nerve is being touched? I'll be monitoring this new development for sure. Cheers for now!

[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]

*Throws rock at stress*

It’s a high pain day today... high stress too. Funds are low and debts are high, spirits are low, pain is high... it’s life right? ahhhhhhhhh stress!!! *throws rock at stress*

It’s also a scary day today... being in both financial and medical limbo is a scary place to be... not somewhere I thought I would ever be... not at my age! I mean, who at 30 thinks their lives are going to be put on hold because of injury/illness? You know, I thought I was prepared for this... even though I didn’t think it would happen... I have long term disability insurance... it does nothing for 4 months of unemployment...  I didn’t have that much sick time so now I’m in limbo for that. Also, who’s to say that my injury won’t get better? I am trying to be optimistic but each day I hope to feel better and I wake up the same or worse. Today, I woke up so exhausted and sore... it was a very restless night of attempted sleep. You know when you are so tired that you feel like you are in a cloud? That was me this morning, I had to fight to get out of bed... why didn’t I sleep in you say? I didn’t have to be awake at any particular time you say? I’m aware... but anyone with chronic pain knows that when the body is awake, it’s awake and needs to start moving. Sometimes that’s 5am, sometimes that’s 9 am... Very rarely does one get a restful sleep... I’m getting very good at functioning on less and less sleep. Yay for not being a bitch! 

Anyone with chronic pain, what do you do to fill your time? My husband and I love to play music, he plays guitar and we both sing... this is fun but on high pain days, we can’t jam for long. Breathing deep really puts pressure on my spine and makes that electrical pain even worse, not to mention my husbands spinal stenosis makes holding the weight of the guitar for extended periods of time a little difficult. We usually start jamming standing (also a good way to get some standing time in while not walking too far) but then resort to sitting with back support and then finally have to give up when the pain gets too bad. It’s stupid... something we love to do that shouldn’t hurt, hurts like hell. Fuck right off. 

In happy news, I baked some fresh bread today! I let the stand mixer do the work for me, I just had to lift the dough onto the pan, make a few slashes in the top and put it in the oven. The bread turned out great! Anyone want to buy some bread?? lol... half kidding. 

My husband decided to shave his head today... part way through the razor exploded... yup... that’s about right for our luck! lol So of course we did what anyone would do... use the trim attachment to the face shaver and hope for the best! Well... 2 hours and several hilarious hairline progress pics later, his head was shaved and our negative energy was gone. Sometimes the best medicine really is laughter... even if it’s at yourself! 

This is our furbaby... he makes us smile every day! He wakes us up with kisses and cuddles with us while we fall asleep. He’s the best thing to ever happen to us both (aside from marrying each other of course lol) and we love him to pieces! xoxooxoxoxoxox *snuggles*

[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!