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.

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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

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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.

IMG_20150131_033613

 

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Can We Just Skip Christmas This Year?

Please?

Pretty please?

Not only am I working Christmas day, but every holiday, birthday, get together, organization and event is always left 100% up to me. Cooking, cleaning, buying, wrapping, planning, organizing, etc etc.

I don’t have it in me this year.

I can’t get into the ‘spirit’, I can’t drag my sorry ass out of bed, I can’t get the energy to go shopping or scour for the best deals on toys, or get ‘creative’ with pre-holiday crafts or plan for 9-10 hours in the kitchen of cooking or assemble 20+ christmas gifts for my staff.

I just want to go to sleep, and wake up in January.

I feel alone and defeated.

I hate ADD.

I am a big whiny sack of crap today 😦

The anxiety and panic of being back on 90mg/day prednisone is starting to rear it’s ugly head today. I can feel my heart rate starting to accelerate as I sit at my desk in my office, my body temperature creeping higher, pupils dilating and everything is starting to get very vivid, crisp, and acutely aware.

I’m almost entirely positive that someone is leeching all the oxygen out of the room and like some acid trip vision from Alice in Wonderland the walls are starting to move in and the roof is getting lower.

I’m starting to count my breaths and trying to focus on the ticking sound of the second hand on my watch. Anything to distract my mind from the fact that as much as I know prednisone is behind this – I can’t do anything to stop it, and my only chance is attempting to manage it until the sub-lingual wafer of Ativan dissolves enough to reach my blood stream.

Breathe.

God,

Grant me the strength to accept the things I cannot change,

The courage to change the things I may,

And the wisdom to know the difference.

-Emm

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Oh Prednisone…. We meet again

You always hear warnings about being on long term prednisone for a number of reasons, but in the fine print somewhere is also the following year or so AFTER you have gone off of it that it can still effect you.

I mentioned the past couple weeks to my dr… and the fact that unlike a hormonal cycle – these feelings and vague symptoms weren’t going away. Low and behold, apparently prednisone has made my adrenal glands very angry / lazy / useless little sacks of garbage, which also means that any time my body is under stress (whether that be dental work, an infection, fatigued, sick, emotional stress, etc etc) my wee adrenal glands can’t produce enough hormones to compensate for it, and the result is…. wait for it…..:

*Low blood pressure, extreme fatigue, lack of emotional and coping ability,  inadequate response to stress, impeded immune response, insomnia, abdominal pain, hormonal deficits, severe worsening PMS, suicidal thoughts, and lack of focus / ‘mental fog’ to name a few.

My. That sounds like fun – and sure explains a lot.

Prednisone, dear prednisone, where for art thou compassion? 😥

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And here a little lot of real…

Well.

The things they don’t tell you and you have to find out on your own.

The past week I have been a train wreck. My life is a train wreck.

I cry for no reason.. *NO* reason.. I have thoughts that terrify me… horrifically and dangerously – organically all the way down to the very inner core of my soul. It’s like someone stole my bubbly, flat lined, overly-optimistic and obnoxiously energetic mind and swapped it with a cataclysmic, gory nightmarish scene from what’s the guys name that does all of the creepy Christmas movies? you know…what’s his name… Sigh

Like.. if that guy and the writer of American Psycho were to bake a cake, and then Marilyn Manson’s therapist and aspiring psychological thriller writer made the icing, then baked at 375 for 30 minutes and out popped a mind – that would be it. Then, that mind, then they viciously stole my mismatched fuzzy slippers, green and pink plaid pajamas, girlishly ridiculous giggle, lopsided smile, and stuffed me into it.

That… that’s what it feels like.

There’s dark times, and then there is insanity…… and I can confidently say, *nothing* is more chillingly petrifying than the idea of truly and utterly losing YOUR own mind.

Then, in a desperate act of denial and inability to accept that ‘this‘ monstrosity was actually me, I found an obscure article that cites long term, moderately dosed, subcutaneous chemotherapy combined especially with long term prednisone use causing extreme and magnified PMS symptoms of hormones to the lovely Pandora’s box that is the female reproductive system.

Wait.

What?

This is because I HAVE A UTERUS?

…………………………………………………………………..

Shit.

Well, on the bright side I at least know it’s not actually me – and my good lord in heaven the relief that came with that was like the raw and real and amazing feeling of the abdication of a man who was wrongly convicted of the most heinous, cruel, and monstrous crimes you could ever have imagined while he was standing on the gallows front.

Now that the euphoria of that has set in I realize… so… 1 week out of every month, I am going to have to put on proverbial armor to fight the most intensive war of my existence to defend my life against myself?

I realize that sounds overly dramatic, but all i can say is that it is a gross understatement… It’s something you truly can’t convey in words, let alone elaborate and explain enough to someone that has not gone to that battle.

It is haunting.

The realization that in an extremely calm, and terrifyingly clear manor I worked out my life insurance and property dividends to make sure my loved ones were cared for… that I have absolutely no emotion when I sickly and vividly fantasized about my car going over a high bridge over deep water in the beginning of a very chilling Canadian winter, and all in slow motion feeling release, and comfort, and peace in the moment before the car hits the water and I open the windows a crack to ensure it sinks, seeking solace in the cold and the predictability.

I can’t believe I just wrote that. I can’t believe *THAT* was a product of *MY* mind.

I have tears running down my face like newly formed and sporadic river streams.

Half the battle is knowing that it’s not YOU. It’s not YOU going crazy. It’s an artificial crazy. It’s a Trojan horse filled with crazy. A Trojan horse filled with barbaric, unearthly strong, foaming at the mouth and rabies filled, sinister crazy.

The other half, is using that knowledge to make you survive and cope through the week of crazy that inevitably will come and as I put on my armor I will whisper the serenity prayer… over and over.. and put my foot forward with my eyes closed and hope to god and anyone else that I make it to the other side, pushing forward with the knowledge and using that knowledge to know that at some point, it will end.

It will END.

I didn’t scrutinize the medical references used in the article that I read, I didn’t do any background checks concerning the scientific basis, and I purposely didn’t look at the credentials of the writer.

If someone gives me a sword and a shield before I walk into a battle field – I will not question where they came from or what they are made from. All I am going to do is use them to the best of my abilities and hold my head high because that sword and that shield is going to be my salvation.

Granted, I am also on 90mg’s of prednisone as well, so that could very easily also entirely be responsible.

Oh Prednisone. Damn you for rearing your ever ugly head yet again. Saving my life, by stealing my sanity.

I believe the greatest battles aren’t the ones we have against other people, or illness, or with worldly substance – it’s the battle we have with ourselves.

All. The. Time.

I heard the most incredibly raw and soul-striking lyrics that blew my mind.

“If you’re feeling small,

I will love your shadow.

And when the lights goes dark,

I will stand right beside you.”

“I know it’s getting harder… I know the lights have all gone dark on you,

So when you’re feeling small, I will still love your shadow.”

I guess I will leave it at that for tonight.

For anyone that is fighting a battle against themselves… please put your hand over your heart and listen to the harmonic thump of it beating, and please listen to it and realize that, that is purpose… and don’t give up.

Your heart and purpose haven’t given up on you.

Anyhow. I guess it’s writing like this that is the reason I didn’t give anyone this blog address.

If anyone stumbles upon it – I hope and wish you gain strength and know that you are not alone. It happens to the best of us, and even the most indestructible of us, and even the most infallible of us…..

Take care and hug your loved ones extra tightly.

-Emm

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An Introduction to Prednisone and My No Good, Terrible, Very Bad Day.

Take it, they said.

It’ll make you feel better, they said.

It’s a wonder drug that saves lives!, they said.

What they didn’t say is how in ‘massive’ doses prednisone will also make you gain weight, lose your hair, develop ‘moon face’, discover new and intriguing pain each day that wasn’t there before, not sleep for days at a time, be a total basket case and have skin akin to a pubescent 13 year old…. -oh, did I forget to mention the constant fevers? Nausea? Head and jaw aches? Oh yes, boys and girls, all this and so much more…..

To be fair – it did alleviate some pain and it does save countless lives. It also can cause pain as a side effect, hospitalize you with adrenal failure if your taper isn’t aligned with every solar planet on the 3rd new moon with your left toes crossed and tongue twisted just right, cause memory problems, blood sugar instability, and the longer you are on it the more severe and detrimental it can be in the long term. It’s like exchanging one demon for another.. Gain your physical strength, but lose your sanity.

Prednisone is a corticosteroid – which in english means (in my case) it was used to shut down my immune system and adrenal glands in an effort to stop my body from attacking itself.

Now comes a little biology lesson on your handy, dandy, little adrenal glands! Don’t let their small size fool you; these powerful little hormone producing bean shaped glands above your kidneys manufacture and secrete almost 50 different hormones – including steroid hormones such as adrenalin, cortisol, aldosterone, estrogen and testosterone that are absolutely essential to your health and vitality. They not only significantly affect the functioning of every single tissue, organ and gland in your body; they also have important roles on the fluid balance control and blood sugar regulation. They even regulate how you think and feel and determine how your immune system functions.

Now, doesn’t that sound lovely?

So what does that mean then, when prednisone shuts down our little friends?

In my case, it meant having my face replaced with an acne ridden basketball, absolutely zero ability to cope with every day life and stresses, constant ‘mystery’ pains throughout my body, severe and extreme insomnia, catching every and any ‘thing’ that was going around, continuous fevers, and as the proverbial icing because of the high dose I was on it also destroyed and leeched all the calcium from my teeth – so I am now looking at my future of having to get dentures before my 30th birthday.

Have you ever had a vivid, terrifying dream but much like in a bad horror movie, you can see and hear the monster, watching as the disastrous end is coming, however when you try to scream out a warning, no words come out?

It’s a LOT like that. Eerily like that.  They say that crazy people don’t know that they are crazy… However, with prednisone you are fully well aware just how completely and utterly crazy you are – and yet can’t do a single damned thing about it.

I was one high-strung, fun filled little ball of psycho! I would refer to myself as Seniorita Psychopants, or Captain Crazypants – depending on the day and my ever-changing roller coaster ride of a mood. 🙂

Against my better / more intelligent judgement, but in the hopes that others stuck taking high doses of prednisone and experiencing the same no longer feel so alone, I’m going to share one of the (many) low points midst the 6.5 months I was on 90mg’s of prednisone a day. It looked a little like this…….

Early summer and the sun was shining with a cool, gentle breeze. The air smelled of crisp, fresh rain and you could hear the distant sounds of children giggling and laughing at a nearby playground.

I went to shower – Zed put in a load of laundry and there was no hot water.

I went to make coffee (nectar of the god’s and as vital as air!), and of course when I ask Zed where the coffee was hiding he looks dejected and mutters……
“Oh… I knew I meant to pick something up and couldn’t remember what” as he shuffles his feet awkwardly and gives me a look that can only be described as similar to a garden mole that has just looked up to realize he was nose to nose with a giant, starving, and slightly rabid Siberian tiger.

I decide to try to find something to eat, as my DM is acting up and the foods I can actually eat, and low and behold, out of everything in the fridge the ONE thing Zed has chosen to eat earlier that day was the one food I could actually eat in the house.

I give up on eating.

So, I figure I will make a chai tea latte. I burn the milk, spill the chai concentrate and break a glass, all in a 5 minute time period. I give up on drinking.

Deep breathes.. Count to 10… just breathe.

Walk away. Just walk away.

Crisis averted.

For now.

In the mean time, I am running an hour late leaving my place to go grab my mom for her errands I promised her. So. Off we go to hit the ground running.

I had just picked my Mom up to take her to grab some groceries, and on the drive was telling her all about my no-good, terrible, very bad day. About how I had been fighting with Zed all day because in his absent minded, selfishness he had consumed all of the only food in the house at the time I could actually eat without getting violently sick, about how everything I touched, did, or even came in the general vicinity of went horribly sideways the entire day.

We traipse through the grocery store, getting my Mom’s various items, and my eyes light up and gleam as they meet the Starbucks sign in the corner of the store. I sigh loudly and smile at the thought that if nothing else, I could end the no-good, terrible, very bad day with a nice, piping hot, cinnamon dolce latte. I hum softly to myself as I wait for my delicious latte to be made, afterwards having a wee bit of a pep in my step that had been absent all day.

After settling in the vehicle and bracing myself for my first positive of the day / reason for existence, I take a sip of my wonder-latte; and promptly burst into tears. I don’t mean gentle sobbing, I mean full throttle, uncontrollable bawling. My Mom starts to panic – she is frantically pleading with me, trying to coerce me into forming a comprehensible sentence (or even word at the least) to communicate what earth shattering catastrophe just turned my world upside down.

Finally I manage to blubber: “Mom… the…. they… they forgot the cinnamon dolce syrup”, in the most pathetic voice you could ever possibly imagine, stuttered and stammered through quivering lips and wet, red, swollen eyes.

My Mom instantly gets the ‘Mom’ look set on her face (EVERYONE knows THAT look) and huffs, “I may not be able to do anything else, but this…. THIS I can fix!” as she marches my latte back into the store,  jovially returns it and sweetly asks for it to be remade.

By the time my Mom returned with the latte not even the salt from my copious amounts of tears could ruin it.

Until…

We pull up to her house, I slide my e-brake into the active position….. and I realize for the first time that entire day – I forgot to put on underwear.

And that, my friends, is just a smidge of a glimpse into the fun filled, terrifying clown house that is prednisone. 🙂

-Emm

 

 

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