What? Fibromyalgia is real?

Well.

After / during an extremely strange acting case of pneumonia (probably brought on by all the long days, double shifts, and ridiculous hours I worked over Christmas) I was in my internist’s office after maxing out the prednisone yet again, and doubling my current chemotherapy injection. He was preparing me for the next reasonable step of trying to get the DM under control – adding a secondary chemotherapy treatment that was a 6-10 hour infusion I would recieve one week, then again 6 days later, then 4 weeks after that, and cycle so on….. This would also require me to go and get tested for every autoimmune dificiency disease under the sun (HIV, HPV, TB, etc etc etc).

I ended in my rheumatologist’s office as he told me that he was pleased with how my DM was on it’s way into remission, and after pulling, pushing, prodding, poking and examining me for half an hour, re-reading my lab work, chest and spinal x-rays, and all my results, he told me that he was officially diagnosing me with fibromyalgia as well.

………

After I picked my jaw up from the floor, I told him the only thing I had ever heard of fibromyalgia was it was what Doctor’s told middle aged women and seniors when they had no other name for the aches and pains that were in their mind…….

He told me that unfortunately due to general doctor’s using FM as a ‘catch all’, it got that reputation, but in reality it is a very real, very scientific disease that unfortunately is nerve disfunction and has to do with nerve compression and misfiring. After all of these things came to light, it was decided by the provincial government that only neurologists and rheumatologists were qualified to properly and officially diagnose patients with fibromyalgia.

Well. That’s super fun.

Unfortunately it explains every mystery as to why I could be on inhuman amounts of prednisone, narcotics, etc etc, and still have certain pains that would not even dull…. It explains the sudden and extreme (and trust me, there truly is no words appropriate to describe the sheer exhaustion and fatigue accurately) lack of evergy… Like, walking up a flight of stairs would just about kill me, or I would try to get out of bed and I would start to cry because my legs just…. wouldn’t work. Like, I send out the office mail but they just blissfully unaware missed the memo.

Sigh.

Unfortunately there is no ‘cure’, and this is a life long disease. It is most commonly brought on by major trauma to the body (oh, like a pulmonary embolism or extremely aggressive autoimmune disease) and is aggrivated by stress – like running your body down and then developing deep rooted infections, like pneumonia……

Fortunately, with drugs like Lyrica that work strictly on ‘nerve’ pain, sleeping medication, and ‘life style changes’ the FM can be “manageable” at times, waxing and waning to varying degrees……… or in my rheumatologist’s words, “Ideally you will find and adjust to ‘your new normal’.”

I have yet to turn 30. My plan for my 30th birthday is to go sky diving.

And yet when I went back to the general doctor to ask his opinion (as I trust him more than any medical professional I have ever in my life met) he shockingly completely and totally agreed with the rheumatologist. He felt guilty because he should have seen the signs and accused himself and my internist of being so focused on the DM that they forgot to see the forest through the trees – or in this case all of the signs pointing in an additional disease direction. Apparently the first order of business was getting my body in a place where it stood any a slim chance at trying to get the FM under control and in a manageable place. This meant starting the Lyrica right away, tapering off of the prednisone as soon and as fast as humanly  safetly possible, and getting rid of the deep rooted spawn that had settled into my right lung, set up a beach side surfboard kiosk, and now is infamous in the neighbourhood for making the best mohito’s around.

This involves me taking time off of work to do a whole lot of nothing. Literally. Sleep. Try to eat. Sleep some more. Be isolated. Did I mention, sleep? Oh, hey – there prednisone.

And then the taper….. The first attempt did land me in the hospital with adrenal crisis, the second landed me in a slightly less intense, but longer and less controllable hell of adrenal suppression, and the third only made possible by a ‘pulse’ increase dose of my chemotherapy. So I beg him for the least possible amount of time – beg him to change his mind – plead with him that work was my sanity, my happy place, my ‘normal’…… That got me a letter saying I was to be off and he will review my condition in 2 weeks. I did convince him to put in that I could remotely work from home up to 3 hours once a week to do my staff’s payroll – and boy is that backfiring on me, now.

My boss currently came recently from another industry. An industry known for ‘hiring and firing’ and being brought in as a hedge cutter – people are discpencible services and not humans.  She is a ‘yes man’ for the corporate world and just one of…. ‘those’.

I have anamazing staff retention rate. I have great engagement. My staff work far more and harder than they get paid to do, and they do it with laughs and smiles on their faces. My views on managing are far different than hers – and unfortunately for her I am outspoken and opinionative and in general not intimidated or shy about defending my team.

So anywhoo – the disability. After the emotional whirlwind of trying to deal with a disease with such a severe stigma attached, never EVER even being faced with taking sick time, let alone disability, we begin the disability fun.

So far I have been told:

My remote access is to be taken away (which, as my manager puts, isn’t a big deal because she saw no reason for me to have it in the first place), my company liason tell me that because my doctor put in I ‘may’ be able to work slightly from home that it’s a red flag, and then shortly after the third party disability insurance company calls me to tell me that they are challenging my claim, and if it is denied they will immediately notify my company and they are to cease my pay immediately.

Wait.

What?

All within 24 hours of my doctor telling me that I am physically incapable of functioning right now, let alone working full time (which, for me being salary management means work weeks ranging from 50-60 hours a week, depending on the week)……

So I am forced to take time off, and yet get nothing but absolute hell doing what I am told.

Awesome. Needless to say – it’s been a wonderful week. I have spent more time running around to specialists, getting paperwork filled out, justifying and pleading for my own health and being blindsided by apparent ‘protective’ agencies than I have in my life.

So much for being off of work to rest, or attempt to get better.

My current manager, who we can refer too from here on out as evilnastyunfeelingcretinouspassiveaggressivelylazywench E, is using this to her full advantage. She has made many alluding comments as to how my department really needs a new prospective in it – focusing on cost cutting and ‘more outward and forward thinking’, etc etc, and ‘you know, maybe my health just doesn’t allow me to be a part of the current industry I am in’, etc etc. Needless to say, she is having a hay day.

Anyhow. That is about my update on the current situation.

Maybe it is true – maybe fate truly does push put you in the place right where you need to be.

Maybe the universe has a way of nudging you towards change and the right direction when you don’t have the ability or confidence or knowledge or courage to do it yourself.

I guess only time will tell. Either way, I believe 2015 will definitely be filled with new challenges, some for good, some for bad, and all of them for learning and growing.

It’s just about 5am and I suppose I should probably either shower or attempt to be a semi-functional member of society. Oh, dear sleep, come see me  again soon – I do so miss you.

Happy Friday / Saturday.

-Emm

Ps. I bought this necklace off of Etsy a few weeks ago. It came the day I saw my Doctor and since I started the process with work I have developed a habit of rubbing it subconsciously periodically. Somehow it seems to help. Funny.

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About emmbeezee

Who I am and what I am about. I'm a technologically challenged, small town girl of 29 with a rare autoimmune disease called Dermatomyositis. I am married to my best friend and soul mate, second and last marriage for the both of us. With that comes one full time teenage step-son, one half-time younger step-son, a mildly unbalanced cat, and my slightly neurotic, lovable Mom. I have weird hair, tattoos, and passions for roller derby, crocheting, and reading. This a glimpse through a keyhole into my world.
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One Response to What? Fibromyalgia is real?

  1. Sounds EXACTLY like what I’ve been dealing with over the past year! Your attitude is great and your outlook on being in the right place is amazing!
    I too recently went and am still going through the disability process. If I didn’t have to go through this myself I would never know how the process works… or doesn’t work!

    Liked by 1 person

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