The painful truth.

For those of you who don't know me, let me start by introducing myself.  Hi, my name is Amie.  I am not a Doctor.  I am not a nurse.  I am not even a receptionist at a Doctor's office.  I have no medical background, and in fact I'm squimish around blood and I can't even say the word mucus out loud because it makes me gag.  

Oh, ew, oh gross.

ok, move on.

The reason I say this, is because I want to express that the views in this blog post are not backed up by a medical background.  In fact, not just this blog post, but also anything on facebook, twitter, anything you hear me say...in fact anything verbal or non-verbal that comes from me may not be based on fact, but rather by experience.  They are not necessarily the views shared by my own Doctor.  

See, the truth is, I'm not convinced that we humans have ourselves figured out, and nor have we figured out the viruses and infections and bacteria that plagues us.  What is true for one may not be true for all and my opinions are based on my own personal experience.  

Ok, and sometimes things I read on the internet.  

Now I know, I know, that you have to be careful what you read online, because a lot of these re-posted topics on facebook such as vaccination talk and h1n1 talk, causes of cancer, cures for cancer, weight loss solutions, and whatever else has gone viral at the moment are simply embellished posts to get you to believe the point that the writer is trying to make, and many times there is information omitted, speculated, and just plain made up.  

I'm not talking about viral articles, I am talking about pages and pages of people in forums discussing and desperatey comparing symptoms and stories and coming to the conclusion amongst themselves that Medical Science may not have taken something seriously enough. That just because something is supposed to be harmless doesn't mean that it is for everybody. That just because a series of symptoms seem to be unconnected, does not mean that they are. 

And most importantly, realizing that they are not alone.  That the things that they are experiencing and their Doctor's are dismissing are a part of something bigger, and that they are not alone.

I bet that was how people felt before depression was a known and widely recognized disorder. Your Doctor just telling you that you just need to snap out of it, go socialize, eat better, exercise. That you don't have it that bad, and focus on the good things that you have in life.  That it's nothing. 

Thank God that I don't suffer from depression.  Although I have, in the past; during and after my pregnancies.  And it wasn't recognized by my Doctor.  It was recognized by my public health nurse, who was absolutely amazing, and really helped me through some of those dark days.  

(shout out to Julie Sullivan! You are amazing.)

No, I don't suffer from much of anything, on the whole, thank God for that.  

I'm talking about Slap Cheek.  When you say it like that, it sounds so innocent.  aka the fifth disease, because it is the fifth recognized child hood disease.  aka B19.  aka Human Parvo virus.

When you get parvo as a child, it causes a fever, cold-like symptoms, followed by a lacy rash and red, hot, swollen cheeks.  By the time the cheeks get red like someone has slapped the child, they are no longer contagious.  

Brought to you by your local daycare, elementary school, McDonald's playroom.

Not a big deal.  Passes in about 2 weeks.  No lasting effects.

When adults get Parvo, you have exactly the same symptoms, plus some joint stiffness and soreness.

Not a big deal.  Passes in about 2 weeks.  No lasting effects.

Except when it doesn't pass in 2 weeks.  And except when there are lasting effects.

Now this is where my non-medical background comes in.

When you get Parvo, your body builds up an immunity to it, just like chicken pox.  You probably won't experience it again. Except that sometimes it doesn't work that way.  Sometimes it comes back.  Sometimes it never leaves you.

The first time I had Parvovirus was in March of 2012.   Cold like symptoms, followed by the skin on my back being so sore that even cotton t-shirts were painful and sitting still at work was like torture.  This was followed by the tell-tale red cheeks, which was a surprising relief because I knew what was going on.  Slowly, my joints became painful.  Squatting to pick up toys hurt, and climbing the stairs hurt, until eventually I couldn't even drive because I had lost all mobility of my fingers.  I was taken off work for 2 weeks while my Doctor kept telling me I'd be better in a day or two.  Blood tests confirmed it was Parvo.

Not a big deal.  Passes in about 2 weeks.  No lasting effects.

Since 2012 I can count 6 times when the virus has flared up in my body in one form or another. Red cheeks that have come a couple of times.  The same painful skin on the back, that once experienced can not be forgotten or mistaken.  There are symptoms that are more difficult to describe, such as vision issues that come and go.  Like looking through a rain covered window sometimes.  Brain deadness.  Overwhelming fatigue.  Depersonalization - the feeling of being outside your body, and not being in control of your speech or movements. And micropsia - when things look smaller than they really are, or further away (Chase also experiences this, I'll note).  I've had the joint pain come back in 2013 almost to the day that I was off the previous year, and I was off again for 2 weeks with unbearable pain in my joints.  This was followed by small flare ups of joint pain that I tracked back to my diet.  I discovered that I had developed an allergy to beef and pork.  I could not even contact either of these, even sometimes handling the meat would cause my hands to stiffen up.  I could eat moose, but bovine was completely off limits.  

I cut beef and pork out of the diet entirely, and for 9 months we lived on fish, chicken and moose meat.  The worst of it was trying to eat at fast food restaurants, (if I never see another chicken burger in my life, I'll be ok).  But I digress.

About a month ago, my cheeks flared up again, and for two days I was swollen, hot and red.  It feels like windburn.  

After that (and the timing could be a coincidence, I don't necessarily think it was related to that flare up), I noticed that I could tolerate pork again without any effects.  So I slowly introduced it back into my diet.  Now I'm in the process of slowly introducing beef back into my diet, and so far I have not experienced any pain and stiffness.

So how can a food allergy come on so intensely, and leave again as quick as it came, after only a few months?  I asked my Doctor for allergy testing in the middle of it all, once I knew the culprits, and was told that there was nothing they could do to test me for that.  Just keep a food diary and avoid it.

When I started reading the forums on the Parvovirus, it was some pretty scary stuff.  This is a disease that changes lives.  It takes the life you once knew, as a healthy, active, mobile person, and distorts it so that you barely recognize yourself.  It causes some people to have to walk with aides like a walker, wheelchair, cain, or even be bedridden.  It causes chronic pain that most Doctor's will not attribute to anything, but will perhaps prescribe meds like Prednisone.  

I've heard of other people who have intolerances with this disease, to things like alcohol, chocolate.  People who forget their address, forget how to drive, forget how to walk. 

It is often misdiagnosed and testing is done for Rheumatoid arthritis, Lupus, Fibromyalgia, Lyme disease, MS, ALS, Alzeimers, or even depression.  And because the markers in your blood for Parvo stay in your blood once you've had it, it is almost impossible to come to a firm diagnosis that this is the problem.  

There is no treatment.  There are very few Doctor's who take it seriously or understand it. Infectious disease specialists usually do, but I don't have one in my facebook friends, and I don't have a Doctor who takes it seriously.  Symptoms are described by the CDC as being mild and non-specific, lasting 1-3 weeks, but sometimes lasting months or longer.  I've been lucky.  Mine flares up, but it goes away again.

There are people suffering from this, consistently,  for years.

I guess my point in writing this is because it bothers me that something that can be so life-changing can be practically ignored by the medical community, as a whole.  Granted, I'm sure there are many doctors and nurses that understand the complications that can arise from this disease, and would not dismiss it as easily as others.  And I send my thanks to you, if you are one. (Even if you aren't one of them, I still say thank you, because you do amazing work and save and change lives every single day.  Not everyone can do what you do, and that makes you awesome).

My doctor started off as a wonderful doctor, I really liked him.  I'm sure that he is still that wonderful doctor to a lot of his patients.  Since this has all came about, and a brief spurt of anxiety back in 2011, I feel that he no longer takes me seriously, and that he is easily dismissing my symptoms as perhaps hypochondria.  I could be wrong, and I hate to talk poorly about him. But you should always feel that you can revisit a topic with your doctor, and unfortunately I don't feel that way now, and I know that many other people suffering with re-occuring Parvo would echo that sentiment.  

Maybe the mayo clinic needs to revisit this, and do more testing, as their website is very brief and dismissive of Parvo virus.  Maybe the CDC, though not as bad, should do the same.  

People suffering with this disease should not feel like they are alone.  They need support from the medical community, not just from each other.  They say Lupus is the disease of a thousand faces.  Parvo virus is often misdiagnosed as Lupus.  Doesn't that say something about the severity of it?  

Maybe the fact that there is no treatment is the reason that the medical community dismisses is easily.  But for someone who is suffering in silence with a disease that presents in itself in so many unpleasant ways, even being able to put a name to it would be peace of mind.  It would end the struggle of not knowing what the hell is wrong with your body and why you can no longer recognize who you once were.  

For someone bedridden, it might mean the difference between being fired from a job, and being taken off work on paid medical leave that would help their family.  

It may not end the suffering, but having a diagnosis will at least change the outlook of the people around the sufferer.  Help them to understand that sometimes the extreme fatigue is not laziness.  

And it would help them to feel that they are not alone in this, which perhaps is the hardest struggle of all.  

Deeeeeeeep Freeze. Dummmm, d-dum dum.

All the talk in Canada lately is about the Deep Freeze 2014, and in Newfoundland specifically, we have had another problem that has spoken loud and clear showing Newfoundlanders that things need to change, and proving to us that we are in somewhat of a helpless situation.

That's right, fellow Newfoundlanders, we got da Dunderdale.

#Blunderdale.

#Stunderdale.

Our lovely premier of Newfoundland, Kathy Dunderdale. 

You thought I meant the rolling power conservation efforts and long-lasting province wide all-out outages, in the middle of a deep freeze of a Winter like we haven't seen in many years, with more snow on the ground than we've had since 1947 and temperatures dropping well into the minus double digits?  Nah, we're tough.  We've handled outages before, and although it sucks and we likes to complain a little bit 'ere and there, we'll survive, wha?

No my friend, I am talking about the incompetent self-serving premier of Newfoundland. 

We watched a comedy show a couple of nights ago, it was a guy named Katt....umm.....Katt....wait, I got this......

Katt.....

Nope.  It's gone. 

Anyways, even without his last name, I'll move on.  He was talking about President Obama being the first black president.  This was a black man standing on stage telling a huge audience that they didn't endorse Obama.  That even though they were proud at first to have a black president, now they stand back and look at him, like...what the fu-

And let me just say, that we, as the fine upstanding women of this Province, did not endorse Kathy Dunderdale.  Her blundering mess is all her own, and in no way represents the thoughts and opinions of all of the women of this province. 

To put it bluntly, yes, it's nice to see a women premier.  Not because of equality, not because of feministic ideals, not because women are better than men.  No.  A women premier could do a lot for this province by bringing warmth to an otherwise typically sterile government.  A women could offer perspectives that are otherwise overlooked and underconsidered by men. 

But we ain't takin credit for this one.  Nah, ah, you can have her.

Warmth?  Aside from the literal LACK OF WARMTH in the province and in our homes when we lost power in the past week, there is also a very prominent lack of warmth coming from this woman.  She is cold.  She is sterile.  And if she is not, then she is certainly appearing that way.

To come onto a radio show, defend your leadership skills when people are in cold homes for 3 days straight, and tell us that basically we have it good because our streets are accessible and our hospitals have power.....

That isn't not really a crisis when seniors are being moved out of their senior care homes and into hotels to stay warm.....

When schools have to be closed for an extra three days because the power grid cannot handle them being warmed up without tripping breakers and leaving people in the cold and dark again.....

When mothers are wrapping their babies in layers and sleeping with them in the same bed just to keep them warm because they have no power and no heat in January.....

When the gas stations are running out, or already out, of gas, and people cannot find any to power generators that will supply electricity to oxygen machines or at-home medical supplies.....

When our hospitals are running on generators and many pieces of equipment are not working or partially working because of lack of electricity....

THAT is when you need to stand up and be a caring, warm women and comfort and support the people of your province.  You do not stand in front of them and patronize them when they are cold and hungry.  You do not offer promises of this all being fixed in THREE years when the new government love-child-power-supply plant comes on line. 

You get on twitter, or facebook, or radio, or tv, and you give updates.  You provide support and information. 

You assert your power for good.

Maybe you try to convince such places as a hockey arena that may well need to stay lit up in order to not lose a shit-ton of money, and ask them to hold a free skate in the afternoons for people to bring their children to get them out of their cold houses and give them some free hot chocolate. 

Maybe you offer a help-line for people with medical needs who may be seeking such things as gas for generators to power medical supplies.

Maybe, just maybe, instead of belittling your people over the difference between a #crisis and #notacrisis, you forget meaningless words and show your province that you care, and I mean you really care about it's people.  The kind of care that happens when no one is looking.

I am not a politician, I don't follow politics and I honestly do not know enough about it all to have an argument or a debate about her job, responsibilities, NLHydro, muskrat falls, or such topics.  But I am a human with a big heart, and I saw a lot of things over the past week that make me a little less proud to be a Newfoundlander.  I saw a lot of things to make me think that #DarkNL is not just a trending hastag to describe the power outages we experienced during this major fuck-up; but rather it describes the future of this province, if we have such an uncaring, unsupportive person at the helm.

Forever whatever!

So, ok, here is my rant of the day. 

 

I saw a tweet tonight, and although I won't get into what it actually said, it was basically about moms, shopping at Forever21, and how basically they aren't welcomed there.  Let me clarify, it was from a random person, NOT from Forever21 itself, and not related in any way to the actual company.

 

Now, my first thought was, "Oh, how rude is that."  Followed up quickly, by a "HEY!  I'm a mom.  She is talking about me!"

 

How dare she??

 

Now, I will admit that a lot of the clothing at Forever21 is not my style.  In fact, a friend of mine put it best when she said that a new store opened in her area, "Skirts everywhere are going to get a whole lot shorter".

 

And she's right, the hemline of some of those skirts are so miniscule, they could represent Perez Hilton's credibility.  (Boom.  Yeah, I went there.  Yeaaaah, that's right, Perez, THAT was for Aaron Rodgers) (jerk).

 

But then I got to thinking.....Forever21, whether they cater to ridiculously small skirts and shirts that I couldn't even stretch out enough to wear as a bra, had to be started for people like me.  Look at the name, forchristsakes.  It doesn't say Forever16, or ForeverLittleBratBitchOnTwitter.  The name indicates that you are aspiring to be 21 forever, so by that logic you have to BE 21 before you can even SHOP there!!

 

Ok, so my newest leggings with the pleather lace up bottoms may not be exactly age appropriate, but whatever, I like them.  And isn't that what matters? 

 

I think the fact that this young girl is worried about moms shopping in the same place she shops says more about her attitude than mine.  I couldn't care less if I have the same clothing on as a 16 year old.  I am already aware that it will likely look better on that 16 year old, but quite frankly, if it fits me and I feel good in it, then what-ev-er.  It doesn't bother me any.  And that 16 year old should feel ok that even though someone old like me is wearing the same outfit, she is rocking it, and that should be all that matters to her. 

 

Um, besides, have you seen some of the styles lately?  I'm pretty sure that this is a fashion trend that has been around the block a couple of times.  Rest assured, 16 year olds, that a lot of the moms who are shopping at Forever21 are recognizing the fashions from when they were 16.  Does that make you feel better about us shopping there?  Call it nostalgia if you want, whatever.  Just get the hell away from that sales rack.

 

The internet is so full of body-shaming posts and hurtful comments, that we don't need to be hating on each other like that.  There are most certainly fashion trends that I willingly leave to the 16 year olds out there, and those aspiring to be 21 again.  I'm actually quite ok being 30, thank you, but I may, from time to time, dress like I am aspiring to be 21 again. 

 

Truth is, I think that most of the time, you are only too old for something when you put it on and you feel like it makes you look like you're trying too hard.  If you feel good in something, then you are probably rocking it.  And even if you aren't rocking it, you won't notice because let's be honest here, you really only see the critical looks when you are self-conscious. 

 

And someone should let this twitter-twit know that one of these days, she'll likely be a mom.  And even if she's never a mom, she will still be old like me. 

 

So grow up!

 

We're #1...except that's not a good thing....

So I read recently that St. John's is the #1 location in Canada for drunk driving. 

 

There's a statistic to be proud of, hey Newfoundland?

 

In a place as lovely and serene as St. John's, it absolutely amazes me that people still do this.  With everything we know, and all the technology we have, this still happens.  And not only does it still happen, but it actually seems to be on the rise.

 

There are reports now on local news sites that say that 70% of drunk driving arrests come from tips in the public.  That is great, it really shows that the public is concerned, and that they are getting involved to stop this in our city.

 

But with all this effort by the public to stop a very dangerous threat, and the amount of drunk drivers still rising, and not just at night, but all throughout the day as well, it leads to questions such as, are we doing enough to stop this?

 

And clearly the answer is no.

 

So what more can we do?

 

I don't necessarily think that the entire weight lays on the shoulders of the police.  It is great that the public is getting involved, and groups such as MADD certainly do their part to help.  But there has to be more that can be done to raise awareness of just how dangerous this is.

 

When I was in school, we had a group of SADD (students against drunk driving) in our school, but realistically, although it was an inspired idea, we never did too much in the after-school group.  A few of us drew up some posters and came up with a few ideas, but we were mostly there because it seemed like that was where all the older kids were, and it gave us an excuse that we wouldn't normally have to be a part of their group.  But nevertheless, there was some education taking place, and definitely some awareness. 

 

I am admittedly out of touch with high schools nowadays, so maybe SADD still takes place, but there is certainly a need for greater awareness programs, whether it be in school, as part of a re-hab program for people who have been caught, or maybe an entirely new addition to the driving test/drivers permit exam. 

 

What bothers me the most though, is that the majority of drunk drivers that we hear about in the media, are not teenagers.  They are not people who are young and made a mistake and will likely be grounded for it.  They are adults.  Grown men and women.  People who should, and DO know better.  

 

At one of my previous jobs, I had a friend and I knew that she had no issues drinking and driving.  It bothered me to no end, and knowing that she cared a great deal about my family, I put it to her this way.

 

She thought that because she only drove drunk in the middle of the night, she was not risking anyone else's life because no one was on the road at that time of night.  Well, I knew then that she was fooling herself with this crock of shit excuse, and decided to try and wake her up from this stupor that she was believing.  I asked her," What if I was driving my child to the hospital because he had a high fever, at 3am.   You could kill me and my child. How would that make you feel?"

 

I know that she had never considered that, by the look on her face.  I also know that it stopped her from drinking and driving - at least temporarily.  I can't speak for her actions today, but I was not letting her away with it when we were friends.

 

It absolutely baffles me that people would take that risk.  And then you have the ones who won't drink and drive, but consider the risk involved to simply be the police check-points and the risk of getting caught!  Honestly, if you have such blatant disregard for your own life, then there is nothing I can do about that except pray that you will change your mind.  But how can someone have just a feeling of nonchalance towards the lives of anyone else on the road? 

 

Maybe the justice system is to blame.  Maybe the education system.  Maybe there is some way for technology to intervene. 

 

But do we really want to leave such important decisions in the hands of technology? This should be a matter of teaching humans how to act like humans.  High school should teach things like mortgages, taxes, responsibility as a human, alongside the calculus and physics classes.  Driving school should reinforce the responsibility given to you when you drive a vehicle.  And when someone is caught and arrested, there should be stiffer fines, penalties, and rehabilitation requirements.  We need to teach the general public that this is NOT acceptable. 

 

If you drive drunk and get caught, you could lose your license temporarily, probably spend the night in the drunk tank.  If you drink and drive, and actually hit and kill someone, it's manslaughter and you could go to prison for life.  What is the difference, really?  In one instance you are one bad judgement call away from killing someone, and in the other instance, you are one bad judgement call beyond killing someone.  In both cases, the bad judgement call came first when you decided to start up that car after you've been drinking.

 

I'm not suggesting that we throw away the key for all drunk drivers.  But I am certainly suggesting that we NOT make it easy for them to hop back in behind the wheel again.  And I am certainly suggesting that education and rehab are important steps towards preventing them from hopping behind the wheel even once when drunk.

 

Our children are growing up in a scarier place than we did.  I will most certainly do my part for my children by making sure that a ride is always available, and that they understand, without even a shadow of a doubt what the consequences could and would be for driving drunk. 

 

There is no excuse, and there are no second chances. 

 

When you end a life because of a stupid decision like this, you effectively end your own as well. 

 

And it is very sad and disturbing that some people just do not get that.

I'm a creep....

So I was on facebook today, creeping around on some people that I used to know.  (ie- checking out facebook profiles of people I am not personally friends with to see how their lives are going, etc).  I know it's weird, there's a reason it's been coined Creeping.  But no one can tell me they don't do it themselves, or at least think about creeping people now and then. 

 

The weird thing about creeping people, is that you never really know what you are going to find.  Especially if it's someone that you've lost contact with a long time ago.  For years and years I had tried to figure out a way to track down an old childhood friend of mine.  Every now and then, I would randomly do a search on whatever social network I was using at the time (ICQ, Hi5!, facebook, etc) to try and locate him. 

 

There was never anything. 

 

Nada.

 

Like he vanished into thin air.

 

Until suddenly, there he was.  I had found his profile on facebook.  And the funny, goofy, endearing guy we had been friends with years ago was on my screen.  I was finally able to see him; in all his hemp and poncho glory, sporting some less-than-neat-o facial hair and possibly questionable hygiene. 

 

I called my bestie, and got her to search for him. Quietly, and without hesitation we both decided that we wish we hadn't ever looked for him. We quietly closed our browsers, turned off the computers, and never spoke of it again.

 

Then there are other people who you can search for and you find that the person has exceeded your every expectation to your surprise and dismay.  Especially when that person is an ex.  This hasn't personally happened to me, of course, all my ex's have been completely torn up and have never fully recovered from the loss.  This is just an example, not related to me at all.  But I imagine that this has happened to some people, and it must suck.

 

Royally.

 

Creeping can be destructive, though, so you have to be careful who you creep.  And if you learn anything by creeping, be very careful in how you use that information. Or better yet, just don't use it.

 

Bosses wife at the Christmas party:  Guess what my husband gave me for Christmas?

You:  Oh, I saw the beautiful bracelet, you must have loved it!
Wife: Um.  No.  He gave me a Roomba.  What bracelet are you talking about?

 

Eeeesh.

 

Creeping a person on facebook is like running into someone that you don't want to talk to, but knowing that you are safely across the room from them in a safe place where you can watch them at will and not be detected.

 

Not in a place like, for example, if you were at a ob-gyn's office, waiting for your pre-natal appointment, feeling like a sweaty whale at 8.46 months preggo, and looking up from your embarrassing women's health article to see an old friend, whom you left off on less than ideal or flattering circumstances, and his new skinny, cute little non-sweaty wife. 

 

That is a perfect example of why creeping is so great.  Because you wouldn't have to hide behind your embarrassing magazine and mumble something about it being too warm, and pretending that you don't recognize them, when your red face clearly tells a different story.

 

If you were creeping on him instead, you could eat your chocolate covered pickle ice cream in the privacy of your kitchen, and mumble obscenities to yourself about her cutsie little garden and their cutsie little ball of fur with the pink bow in it's hair.  I mean, come on. 

 

Barf.

 

And it doesn't have to be an ex, even, it could be anyone who is no longer in your life that you wish you could be only at your best when you see them.  The reason why you feel that way is not important, but sometimes it is merely a matter of pride, goddamnit.

 

I feel that way about most everyone that I have ever known in my life, no matter who  they are or why I knew them.  If I go out to a store, if I see someone in the distance, I'll find myself sending up a silent prayer, "Please let them not see me this time.  Please let them run into me in a few months instead, when I have a chance to loose some weight, touch up my roots, or at least put a bit of powder on my face"...

 

Maybe it's a lack of self-confidence, maybe it's a little bit of snobbish attitude, or perhaps it's just a little bit of social anxiety.  Whatever, I'm sure it's not just me that feels this way sometimes. 

 

So I take comfort in the fact that I'm not alone in that, and you should too.  For every person that I creep, I'm sure there are a few people creeping my own facebook.  There's a reason that we put our best pictures on facebook and untag ourselves from any unflattering pictures.  It's not just for the people you are friends with, because if they are real friends they won't give a shit what your hair looks like, or if you have a double chin in your picture.  Sometimes it's for the people that you aren't friends with as much as anyone else. 

 

Sometimes, it's merely a matter of pride, goddamnit.