Insurance, Doctors, and Life in General

Wow.

I can’t believe January has already flown by! 

It seems like every day I’ve been either at medical appt’s with various specialist’s, on the phone all day with my insurance company (and the broker, and the local jeweler concerning my ring), coordinating my phone replacement (because I drop everything I touch… which apparently is bad for phone screens), teaching my step son how to drive, undertaking a huge project for Zed, and trying desperately to cross off any of my ‘around the house’ list….. This was being attempted, and even somewhat working, until it was beginning to be apparent that something in the delicate eco-system of my body was very, very wrong….

To most people, having a positive pregnancy test would be wonderful, celebratory news!

…..Unfortunately, when you have an IUD and are on low doses of chemo + immune suppressants + a myriad of other medications that are very, very not safe for pregnancy, and have previously had an ectopic cyst / event – this is not good news.. 

After a positive home pregnancy test, an ultrasound confirming the ectopic placement, and more tests to confirm that my body had already started the miscarriage process, I was sent home with the list of ‘Come Back Immediately if’s, and instructions on things that may make it easier as ‘nature runs it’s course’…. 

My heart hurts. 

I figured it would be hell on me physically, but I didn’t realize the effect it would have on my soul…. At the hospital, they did mention as I was having a ‘later stage’ miscarriage that it would take a few weeks for my hormones and ‘big feelings ‘ to sort themselves out. Being that Zed and I were hoping to at least try to expand our family when I was able to get off the medications, this hit me like a freight train…

Ugh.

Zed has been having to travel like crazy for work, so he has been gone since this started…  if I am truly honest with myself, this is probably a good thing. Zed doesn’t need to see me go down in flames – he sees me enough crippled by the diseases, he doesn’t need to see me emotionally crippled as well.

Wow. When I began writing this, I had no intentional of even bringing this up, let alone centering around the miscarriage, however maybe it will be cathartic… hell, I’d settle for a placebo effect at this point.

I’m emotionally exhausted. 

I will recover. I will overcome. I will trudge on and keep on keepin’ as it were…. That day, however, is not today.

Tomorrow I will get up, dust myself off, and put my big girl panties on, but today I just need to curl up in a little ball and cry it all out…. Today I just need to crash

Before I got sick, I would tell my friends ‘that hopeless and misery are okay places to visit once in a while for short trips, but you can’t allow your mind to live there’…. Funny enough, I find myself repeating this to my own self far more often than I’d ever thought possible.

It doesn’t change the reality of it, though.

Real life is pain, tears, soul-wretching-heart-breaking hurt, anger, and disappointment.. But it is also joy, blessings, amazement, happiness, and elation… and there are places and purposes for all of them.

Tomorrow is a new day – and as determined as Clark Griswold on Christmas, come hell or high water it will damned well be a good day.

-Emm

Oh My – An Entire New Year!

Oh my doodlepants! Apparently I have been seriously neglecting my poor blog (and it’s like, 3 readers, lol).

That’s okay – 2016 was horrific. It was a fight, a struggle, a knocked-down-in-the-mud-and-then-get-shit-on-by-seagulls kind of year.

So far 2017 has been happily better to report!

I met my new rheumatologist last week, and she seems like she’s a great gal. She wasn’t daunted by the laundry-list of dermatomyositis, trigeminal neuralgia, fibromyalgia and myasthenia gravis.

Yeehaw!

My previous rheumatologist had the same relationship with me that scientists do with labrats… – actually, he had the same relationship with me that high investors and sleazy salesman have with the scientists labrats for some new and innovating product. He really liked me for the data that I provided for him to do various presentations and papers to his peers on dermatomyositis – seeya and thanks for all the fish!

On top of my health issues, Zed’s thyroid randomly crashed at 44 and that took most of the year to sort out…. and as an added bonus of torture, he had to go off his ADD medication until it was balanced (which ended up being the first week of January this year). So that was….. yeah… I have no clever pun to describe the hardship, pain, and…. I don’t even have words… It was like Jekyll and Hyde. I have cried a LOT of happy tears since it has been sorted out and I have gotten my husband back… and not a moment too soon – I’m not sure how much longer I could have held out…

And to top off a shit sandwich lovely year, it ended with the 2.5 carat center stone of my engagement ring falling out on December 23 in the midst of the heaviest shopping day of the year in a Costco parking lot. Thank god for insurance – come spring time if my stone is found it will make someone a very happy and wealthy surprise! This was just after a less-than-stellar driver almost side-swiped me and left me beached on a meridian – thanks, random-crappy-driver-lady! I hope you choke on it! 😀

*cough*

I mean…. I hope she had nothing but the merriest of holidays! 😀

On the bright side, 2016 did bring us another rescue kitty. I am officially a crazy cat lady.

This is Mittens (full name of Juliet Mittens – my Moms quarky naming) and a couple of a much grown Spencer ❤

Seriously – how could anyone possibly not be happy with these 2 goofballs around?!?!

Anywhoo. Unfortunately I am pretty plum out of wit today, I apologize.

2017 has already been pretty busy, and I am absolutely going to be making sure I don’t wait another year to update my blog!

 

Happy New Year!

Merry Ho-ho and a happy new year 🙂

I’m encouraged so far this year.

This year has come with 2 new diagnosis’, and hopefully will be my last.

Good news, bad news, good news, bad news.

After a bunch of tests and feeling like garbage left out in the sun too long, my internist has discovered I had adrenal insufficiency (Thanks, Prednisone! *insert eyeroll) and POTS syndrome.

Hopefully, after treatment starts for the AI, the POTS will be easier to control.

The good news in all this, is that for once treatment (for AI) is fairly straight forward and easily managed. Don’t get me wrong, it’ll be a process and involve a lot of learning through trial and error, but in comparison to the last year this is very exciting…. the treatment for POTS is far more complicated. I am really, really, REALLY hoping once the AI is under control, my body can more easily compensate for lateral changes, thus handling the POTS better. I should probably elaborate on what each are.

Adrenal Insufficiency / Addison’s Disease 

Thanks to the long amount of time spent on large amounts of prednisone, my adrenal glands have shrunk and stopped producing cortisol and other such essential hormones. AI causes fun things like (but not limited too); extreme fatigue, constant nausea, vomiting, no internal temperature control, severe insomnia, weight loss, anemia, hypoglycemia, low libido, and inability to regulate sodium levels and emotions. So it feels like I am back on 100mg of prednisone, without actually being on prednisone…. irony being that treatment is going to be a maintenance dose of prednisone, plus 2 other potential steroids.

…………………….

So that’s not overly positive. However, the positive side is that my internist did catch it, and once the endocrine center 1.5 hours away has time to fit me into their busy schedules for more testing, I will be able to find out how much and of what specific steroids I’ll be on for the rest of my life.

POTS

As much as something with the acronym of POTS may *sound* like a lot of fun, in actuality it stands for Postural Orthostatic Tachycardia Syndrome, which is a form of dysautonomia. In regular speak, my head isn’t telling my vascular and cardiac system to keep up with any kind of level or lateral changes. You know that feeling when you get up too fast, and you get the ‘head rush’ / everything goes black / and you may or may not fall back down? It’s like that, but to the extreme… and lately it’s been all the time. This is also the reason that each time I wake up, I feel like I am having a moderate to severe heart attack. Unfortunately there isn’t much known about POTS (as it’s a relatively ‘young’ disease), and management can be very challenging. Massive ‘salt loading’ is a huge benefit in both POTS and AI, so oodles of salt and oodles of fluids are a daily event.

Writing is coming difficult to me today… I haven’t slept in 48 hours, my brain is fragmented, I am exhausted, and just feel…… ‘blah’. I apologize. It’s not very entertaining to even mildly interesting to read this, and I definitely feel like this sounds very ‘forced’.

To be fair, it is forced – but no way to get ‘back in the habit’ without starting up again to build a habit.

The emotional instability is really hard… I feel very deflated, despite my mind logically knowing I should at least be elated.

I’m crossing my fingers that the endocrine center will get me in soon – my internist was thinking 1.5-3 months was a reasonable time frame as I’m a high priority.

Thank you, AHS *angry face*

Anyhow. If you’ve gotten this far – thanks for reading. I’m just beginning to learn about POTS, so if anyone stumbles on this and has some great resources, please feel free to shoot me a message.

Same Bat time, same Bat channel……

 

 

 

Million Dollar Smile!

Okay, not quite $1,000,000, but so far we are up to $31,000.

Holy crab cakes. Thank you prednisone and methotrexate!

*insert eyeroll here*

After almost an entire year of budgeting, saving, stressing,   selling our souls, children, kidneys and fearing – we had enough to get my teeth dealt with.

August 26, 2015 (the day after my wedding anniversary) I spent 6.5 hours in surgery having all my teeth removed, my entire jaw filled with bone grafts, gums with skin grafts, and 4 titanium implants placed in my lower jaw. After which I am now the not-so-proud new owner of $4,000 dentures.

I am 30 and have dentures.

That sentence will never feel natural.

It probably sounds strange, but it’s a very emotional ordeal…After the surgery I literally looked like Richard Nixon- if Richard Nixon got into a bar fight and was covered in bruises with 2 black eyes.

I developed a close relationship with my denturist – yes, I have a denturist… and I’m 30. I saw my denturist every business day after my surgery for 2 weeks, then every 2 days, and so on and so forth, until present when I see him every 3 weeks.

Thankfully Zed really likes my denturist, and they get on like bandits. Whenever we go in and he is with me, they spend half the time gabbing and chatting like school boys – it’s kind of adorable.

The ride home……

Oh, the ride home. I debated sharing this part of the 5th ring of hell experience…. They drugged me up fairly well, even to the point my throat was froze, which meant I could not swallow anything. Unfortunately there was a misunderstanding between the nurses and Zed, and Zed thought I was to have no pain medication until we got home after the 2.5 hour drive…. in actuality, because I could not swallow they gave me pain medication to take ON the way home to keep the pain under control. Zed refused to give it to me, under the impression that I was not to have it because I already had pain relief. Sigh.

I am going to try to paint a horrifying picture for you…

A small, normally unassuming, 30 year old girl.. swollen so bad I am almost unrecognizable with my entire face and throat froze, bleeding profusely from my mouth with no means of controlling it, and without the ability to talk in any comprehensible manner. If you picture something akin to a victim in a Saw movie – it was very much like that. I was still groggy from the anesthetic so not only could I not be understood, I did not have the mental capacity to know that I couldn’t be understood. I’m not sure why, but I don’t come out of anesthetic well… Did I mention that I get hulk-sized, irrationally furious each time I wake up from being put out? And there is absolutely no consoling me until the anesthetic works it’s way out of my system. Poor Zed…. I can only hope and pray that image of me is not burned into his memory. The first, last, and only time I have ever told my husband that I hated him, was during that ride. It was the only words that  were actually understandable from my frenzied shrieking.

What this all translated into was a horrific and terrifying scene…. me lividly screeching gibberish- causing blood to spray all over myself and the vehicle, all the while drooling my face off, decrepitly attempting to drink apple juice which just dribbled feebly out of my mouth and onto my chest and lap.

Not my best moment…… Not my proudest moment…

So that was my surgery experience with my teeth. It still makes my heart hurt to think about it, and I can honestly say I have never been so ashamed… God knows why, but Zed still loves me. Hopefully we will never have to go through that again.

 

 

 

 

 

Updates and Kittens

Kittens!

Okay, so that’s kind of an aside, but let’s touch on the fun stuff first.

About a month ago Zed got a call from one of his contractors saying that a very small kitten had wandered into a bank downtown and was orphaned. After repeated attempts on facebook to locate the owner we took him to the vet – who confirmed that he had clearly been on his own for WEEKS.  After numerous antibiotics, ear and eye drops, and a lot of wet food to chunk him up, Spencer is now a very happy member of the Zee family.

Meet Spencer – yes, he is as adorable as he seems 😛

Tee hee. What a cutie pie.

Onto other not so fun things.. an MRI revealed that my neck has decided to stage a mutiny, and as such is crap. In Canada, the current wait time to see an orthopedic surgeon is 12-24 months – yeehaw.

In the mean time, my amazing saint family doctor sent me for  steroid epidural shots to try to tame the wild beast that is my cervical spine. Unfortunately things went sideways.

Like, very sideways.

Whenever you hear someone that has an 8 inch needle dug into your spine say “oops”, and then receive blinding and excruciating pain – it’s never a good sign… in my case, he punctured my cervical dural (the layer of stuff surrounding your spinal cord) and spinal fluid was leaking into my skull and wreaking all kinds of havoc.

So then this happened.

Unfortunately because of where the puncture was in my spinal cord, both a neuro-anesthetist  and neurologist could not do the traditional ‘blood patch’ treatment due to the high risk of complications :(. After a weekend in the hospital surrounded by various specialists, I’m left with the world’s worst hangover headache (called a post dermal puncture headache specifically) which lasts anywhere from 1-6 months, depending on how fast and how efficiently my spinal cord repairs the leak. The headache is a result of an increase in intracranial pressure from the spinal fluid traipsing around my noggin’ to broadway tunes, and having the time of it’s life. I’m pretty sure it’s because my brain is so largely awesome – the neurologist disagreed, but I think deep down she knows I am right.

So that’s not super fun.

Amidst all this, poor Zed never left my side – sleeping in hospital chairs, listening to the think tank’s brainstorm possible treatments, and hearing all of the very terrifying risks….

Throughout all of these reindeer games, is my mom going in for a spinal fusion. I signed myself out of the hospital 6 hours before we had to take her to the hospital for her surgery. Sigh. It was a very long week.

Next post will be an update on my teeth.

Hope everyone is having a good week – and don’t forget to look around you and see the good and the amazing things in everyday life. Sometimes those can be everything that matter.

-Emm

 

 

 

 

Cupcakes and a blogpost I read…..

Welp, I recently (like, 10 minutes ago) read a fellow blogger’s post that said – Cooking Is Therapy. First some credit, and then onto some cupcakes.

If you get a chance, I strongly urge anyone reading this to check out Clan and Pad’s blog. There is all kinds of fantastic recipes, cute crafts, and great reading.

https://clanandpad.wordpress.com/

I don’t know why this never occurred to me. I do 99.98% of the cooking in my house, and I absolutely adore baking in my spare time. Cooking does a few different things for me… I am like an old Ukrainian woman; if you come to my house – you will be fed. If I don’t feed you, I don’t love you. That really doesn’t apply to anyone that comes to my house, with possibly the exception of the neighbour’s cat, and even then Sass would get fed until he started feeling territorial over me and tried to spray my leg. We had to have the ‘I-am-not-your-property-and-if-my-husband-isn’t-allowed-to-do-that-to-my-leg-you-sure-as-heck-aren’t-mister’ talk…. Also, cooking is a focus for me. There are so many things that have  limited me due to my health that cooking is one of the few things I can still do when I am feeling well. It gives me a purpose.

Baking is definitely where my heart is. I absolutely love it! With summer in full swing (much to my Mom’s delight) I have had access to delicious strawberries and consequently been near constantly keeping the house in good supply of angel food cake with juicy strawberries and fresh whipped cream.

I didn’t snap any pictures of the angel food cake, but here are some cutesy cupcakes I made before for no real apparent reason other than it looked too cute not to try.

Unfortunately, part of the MS testing is because despite previously being a “the hotter the better” kind of gal, I have developed a very sudden intolerance for heat. In the summer, this has turned into quite the issue – especially in relation to cooking in 30oC weather. I haven’t figured out a way around that one, yet…. but I’m working on it.

Dental Adventures in DermatomyositisLand

2 years ago I walked into my dentist’s office,  and had no idea the shitstorm   what awaited me.

After the dental assistant took the x-rays, she strut back into the patient room with an entirely different demeanor. The friendly and helpful assistant was gone – replaced suddenly with a leery, judgmental, harsh, and suspicious glare. I was faced with an interrogation barrage of questioning as to what street drugs I did, how much I drank, when I had turned to drugs, and am I in counseling or have I ever gone to rehab…..

…………………..

Wait – What?

Keep in mind – I have never in my life done drugs, I never had been a drinker, and definitely not in the slightest since I got sick, and all in all – I really have quite a boring and settled life.

After giving me a once-over yet again, Brunhilde the assistant went to have a hushed chat with my dentist.

It took me almost an hour to defend myself, and plead my case to my dentist and assistant. Going through again and again the events of my appendix bursting, going septic, being on long term prednisone, and chemotherapy – any of those alone would ruin someone’s teeth, and all of them combined was a deadly combination.

After my begging coercing, they reviewed my dental records from the previous year where I had perfect teeth just needing a yearly cleaning.

I was then asked if I had consulted anyone concerning dentures.

What?!

I’m not even thirty. Who needs dentures at my age? How does someone even get dentures? Why do I have to get dentures?

Between the septicemia and medications, my teeth had been robbed of all calcium and lost all integrity. As my dentist began tapping my teeth with the metal mirror, they crumbled and broke just from the examination. My dentist kept repeating that she had never seen such disintegration so quickly, and was absolutely horrified and shocked at how barely a year ago my dental x-rays showed a perfectly clean bill of health.

That was the first time I had ever cried in a dentist’s office – unfortunately it would not be the last.

Afterwards, my dentist recommended a good denturist, and found an oral surgeon that had a sub-specialty in oncology – therefore familiar dealing with chemotherapy and “my specific situation”.

I quietly tried to politely listen and hold back my sobs.

My dentist then handed me the first prescription (of what turned into many) of harsh antibiotics aimed towards bone infections. Due to the immune suppressants I had no way to fight infection, and because my mouth was such a mess my jaw bone has been fighting a losing battle ever since.

A week later I was in the waiting room at the oral surgeon’s office.

I was ushered into an office with 4 large screens, an intimidating white and stark desk, a large examination chair, and numerous models of teeth and metal surrounding me.

The nurse that came in told me they were going to do a ct-scan before the surgeon would see me to make sure they knew exactly what they were dealing with, and I was lead into a torture device machine that encompassed my entire head, with my chin confined and strapped down while things whirled and buzzed around me. After being lead back through the maze of rooms and hallways to the surgeons room, my surgeon knocked politely and entered.

He smiled before somberly reviewing my dentist’s notes, x-rays, ct-scan results and medical history on the closest of large monitors. The surgeon then sighed and told me that unfortunately he has seen many patients who have been in my position, and seeing how badly the prednisone had deteriorated my jaw integrity, this was going to be an involved and expensive shit sandwich with no bread undertaking.

My surgeon was fantastic at going over all of my options, explaining to me why I needed bone grafting, metal posts for denture stabilizing, and how little was covered under my insurance.

Sigh.

I tried to blink away tears as he informed me the procedure and posts would come in just over $15,000.

That was back in November. It’s now July and I am now just getting the money to be able to schedule surgery.

Since then, I have had to have multiple teeth extracted due to breaking and crumbling. Each time I have had to have a round of very harsh antibiotics before and afterwards, accompanied by a letter from my family doctor assuring my dentist that I was fit for dental extractions. I also grew to know the contract absolving the dentist’s office of any liabilities off by heart – requiring to sign it each and every time I came in due to the prednisone and methotrexate.

The first time I came in after a tooth had broken clear in half while eating a banana, the dentist informed me I would have to be on antibiotics for at least 10 days before they could extract the broken tooth, as well as another 10 days afterward. I sat in the dental chair with tears welling up in my eyes, nodding as they explained all the risks of performing any kind of work on me, and through sympathetic eyes told me the entire nerve is exposed and if I am lucky it will die in the next few days, easing the excruciating pain.

Afterwards in my car I rested my head on my steering wheel and let it all out.

The tears, the sobbing, the hopelessness, the anger, the resentment, and the injustice of it all.

The emotional tidal wave over threw the throbbing pain from my mouth, and I couldn’t stop. I couldn’t stop the tears, I couldn’t stop the sobbing, and I couldn’t stop the sinking feeling in my stomach.

An hour and bucket of tears later, my eyes stung from the crying and my face was covered in blotches of red and pink, but I was somewhat stable enough to safely drive.

Over and over, this was the routine when my teeth would break spontaneously over the next 9 months – most times unprovoked and unpredictable.

Fast forward, and here I am now.

I am currently waiting for a follow up with my surgeon and hopefully to hear when my surgery date will be.

I have learned that denturist’s are somewhat like used car salesmen.

The denturist I have is working directly with my surgeon to ensure that everything is hopefully in place for my surgery, and things will go smooth. My “immediate dentures” are so far up to $4000 and fingers crossed, will not increase even more after they are initially placed.

It’s still a very emotional topic for me. I am terrified of anesthetic, so surgery is going to be a blast.

*insert dramatic eyeroll*

I get very teary eyed talking about surgery and recovery – the surgeon warned me with a suppressed immune system my recovery will take far longer than the average joe.

I can’t believe I will be 30 at the end of July, and had to save up for dentures.

I can’t come to terms with the fact my lower jaw is so affected by osteoporosis it needs bone grafting and metal posts just to hold up dentures.

I thank god Zed loves me and has stood by me through …. everything.

Zed’s biggest concern is how I am dealing with everything and how I feel. I honestly believe the only concern I will have concerning Zed is reinforcing to him that no, it’s not okay to hide my teeth – and yes, it may be funny the first time he chases me around with them, but after that it’s just annoying.

Well. That was much longer than I intended.

Hopefully in the time before surgery I will have cooled my jets and got my proverbial poop in a group emotionally.

Here’s hoping 🙂

-Emm

 

Thankful…

There are times I look around, and I am absolutely amazed at the wonderment that surrounds me.

It sounds so horrific and cheesy, but it never ceases to amaze me that people search their entire lives for what I see when I look into my husband’s eyes…

Looking around and hearing my step-son laugh, or watching my mom content and reading the latest tabloid gossip..

My house – although built with brick and mortar, has been made into a home by my family..

There is food in the cupboards, and warmth each night in our beds.

Mornings filled with soft words and softer kisses.

Evenings sometimes rushed with cooking and eager voices, but always ending with love and kind words.

Love that knows no distance – albeit an hour or 8 between my siblings. My sister is not only my sister, but also my best of friends.

This is my life, and even in the darkest of times there is always a glimmer of light.

Hopes and dreams are never in shortage, and for that I am grateful.

Even in the midst of anger and hurt, there is never doubt or suspicion. I am thankful for loyalty and determination.

I am grateful for the random patch of lilies that I gaze on outside my kitchen window.

I am grateful… for it all.

Well, it certainly has been a while.

On the bright side, it’s been almost a month now that I have been off prednisone – YAY!

And I mean that in the most absolute and utterly incredulously, most amazing way humanly possible. The crisis of insanity is OVER! My mind is my own again! The evil, nasty, unbalanced, psychotic and ridiculously insane kettle of satanic fish has finally left the building!

*insert embarrassing football victory dance*

Unfortunately I am still off work. It’s been 6 of the most challenging months of my life…. when one hurdle gets dealt with, 2 twice as high seem to sprout up in its place… much like Alice in Wonderland, it’s an uphill struggle.

My rheumatologist and internist are constantly telling me that autoimmune diseases come in ‘packs’ – like once one crops up, it starts a domino effect in your body that triggers other diseases because the first decides to have a VIP access party, and only time tells who the surprise guests are…

In my case, the second was fibromyalgia, and the third has yet to be formally diagnosed, however strong suspicions of all 3 of my medical team leave me with waiting for tests and referrals to specialists that evaluate for multiple sclerosis.

It shouldn’t be a huge surprise to me -my mom was just a few years older than me when her MS reared it’s ugly head. It’s been a different presentation of symptoms than with her, however it’s been anything but a joy ride.

2 months ago I was sitting at home, sipping hot chai tea and snuggling down into an overly fluffed pillow, sporting my pink polka fleece pajamas and bright green slippers, when the most intense and mind-searing pain I have ever felt in my life assaulted one side of my face. I am not talking about the ‘okay ma’am, on a scale of 1-10 please describe your pain level’ pain, I am talking about the ‘oh my good lord, if this doesn’t stop I am going to put my head under toilet water until I stop breathing just to make the pain stop’ kind of pain. I literally went from fine (albeit tacky and eccentric) to laying down, one side of my head cradled by my hands, sobbing silently with tears streaming uncontrollably down my face in about 1.5 minutes.

Apparently this is called Trigeminal Neuralgia. My poor mother shoveled any and all kinds of pain medication in my arsenal at me just to stop the pain. I couldn’t speak because it hurt. I couldn’t stop sobbing. I couldn’t even cry properly because the pain was so overwhelming even that small gesture was too much to hope for…. it was hands down, the most excruciating, mind-numbing, surreally intensive pain I have ever experienced in my life. Apparently Trigeminal Neuralgia is also known as ‘The Suicide Disease’ because it has the highest rated of suicide of any other illness. People end their lives just to stop the pain…

Yeah. I get that.

Fortunately my doctor is an amazing human being who caught it fast and immediately put me on medication that stops the episodes… unfortunately he also informed me through furrowed brows that it commonly is part of the early presentation of MS, and he wants to request the testing be moved up in priority and urgency…

..so that’s not fun…

On the bright side, in terms of neurological and/or autoimmune diseases, MS isn’t so bad. Don’t get me wrong, it is absolutely no birds-chirping, Mary Poppin’s, love-life-and-snow-cones kind of cake walk, however in the terms of ‘best of the worst’, MS is not always the end-all-be-all, and you can possibly live and love a functional, pseudo-normal life.

To top everything off- literally as I was leaving an ophthalmologist appointment in the city, a young gentlemen was enthusiastically texting his girlfriend while going 30km’s over the speed limit when he rear ended my vehicle that was almost at a complete stop. My doctor tells me something called Post Concussion Syndrome can last up to a year, and is the culprit behind my constant headache, nausea, and dizzy spells that are naggingly now part of my every day life.

*head smack*

So yeah… there’s that.

Again – in terms of the best of the worst, I am extraordinarily fortunate that my car can be fixed, parts can be replaced, and other than Post Concussion Syndrome and a lot of bruising, I can happily walk away – and so many are not as fortunate.  Not quite skip through the flower filled meadows yet, but in due time…

So, onward to another day.

Lyrics I think are beautiful, and a prayer I have mentioned before…

“Come on skinny love,

Just last the year…

Who will love you?

Who will fight?

And who will fall… far behind”

God grant me the serenity to accept what I cannot change, the courage to change the things I can, and the wisdom to know the difference….

-Emm

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.