Graves Disease - the Family Perspective

It's my turn to hurt.

If I don't express my thoughts today in print surely I will be on a Pyschiatrists couch trying to explain to him or her what the effects are of what our family has gone through these past few years with our daughter Rayanne's fight against Graves Disease.

Today is surgery number six....but before I discuss that, some history.

About three years ago Rayanne's body seemingly turned backwards and upside down.  

She was hot when it was cold - she was freezing on a hot summer day.  

She couldn't sleep during the night and then couldn't wake up during the day.

That happy go lucky attitude she usually displayed on a daily basis disappeared and her moods were simply down most of the time.  

It was nearly impossible for her to work during this time period but thankfully her employer understood (a medical clinic) and made arrangements for some tests.

I took Rayanne to the hospital for those first tests and when she came out holding a chart in her hands she said...'Dad I have Graves Disease!'

It didn't hit me immediately because I had no idea what Graves was and certainly didn't understand what affect it would have on her and eventually 'us.'

Maybe a few pills would do the trick...and some normal sleep.

Once at home it was off to Web MD, Wickipedia, and Google to try to learn as much as we could about this thing called Graves Disease.

Very simply it's shocking and severe.

Graves hits young females - mostly - and it attacks the various parts of the body ''continously.'

Since the start of these symptoms Rayanne has been rushed to the hospital by ambulance five times with her heart racing at over 200 bpm.  This happens without notice and, in fact, about fifteen minutes after simply sitting with us watching television normally.

There is no warning.

She has had her thyroid out, her gall bladder too, a double hernia, and three extremely painful operations on her eyes as Graves inflames the muscle and fat behind your eyeballs and painfully pushes them out of their sockets.

This, cosmetically alone, causes immense strain as well as attracts horrible comments from insensitive people who seem to enjoy mocking others who are, in their opinions, not 'normal.'

Currently she is experiencing muscle inflamation around her heart. It 'hurts' to simply wake up.

Last year, a side affect of taking daily heart and thyroid pills, and other related medication, she was forced to endure massive dental work to repair cavities in fourteen teeth due to the pills sucking the saliva out of her mouth.

Today is operation number six. 

It's the sixth time Kim, Lauren and I have sat worrying in the Hospital waiting room. 

Six days of countless hours waiting, and wondering.

And six times when we have walked in to the recovery room, post surgery, and felt the immense 'shot through our heart' simply watching Rayanne in severe pain from the surgery.

And with the eyes fully bandaged you can't even cry...so we do!

The hard part of this disease is simply understanding it. 

Some people can deal with it by simply taking pills. Some adapt with minor surgery.

Others, like Rayanne, continue to think it is all over only to be hit hard again and start to suffer all over again in another area of the body.  She is in the 'highest' category possible in Graves lingo.

My wife and I have tried to figure out if there us any genetic connection from either side of our families in the past and we can't. 

Where the hell did this come from and more importantly..why?  

Why our little girl ?

There was no hint of how this came into our lives.  

As well there is no such thing as a Graves Disease Doctor.

You start with your GP...move on to a specialist...then on to the closest expert in that particular area of the body..ie heart, thyroid, eyes, etc. so in each and every case you are in a long waiting line for attention and literally hear several differing opinions on what she/we should do for the particular pain she is having to deal with at the time.

It's extremely confusing, causes an immense amount of stress, and obviously...frustration.

The concern that 'depression' may strike is crippling.  Thank god for Facebook and Twitter so that we can monitor her thoughts and react quickly if deemed necessary.

And let me state that we will go to the end of the world for Rayanne and gladly spend our very last penny to make sure that she gets the very best possible medical care possible and we will do whatever we can to help her get back to some form of 'normal' in her life.

This is not looking for sympathy.  

Through this adventure Rayanne has been a pilar of strength - far stronger than her Dad.

She is determined to fight.  

She is relentless in studying this, learning more about Graves, passing her knowledge along and helping others.

It has helped all of us get through it.

She has never felt sorry for herself once or blamed others.

Though I can tell you honestly that I have silently cried on the inside when she told me about reaction from 'others'....and especially the girls making fun of her eyes in bars, clubs and restaurants.

Ditto the guys she dated who bailed on her after the third date.  I say third because she never tells them a thing about Graves until the third date to measure their character...which is obvious when they don 't even respond to her calls or texts after that revelation.

Their loss - you don't know what an amazing person you left behind boys.

One girl seems to like to tweet her hate.

'Get over it' she says. 'Sympathy whore' was the lowest thing I have ever seen stated by her...and to this person I hope you never have to go through 'anything' with your children like we have with ours.  I truly feel sorry for you. 

I'm not a spiteful person but on days like this you will never know how deep that cuts - and you should know it.

So today I hurt.

Big time!

I feel guilt. 

I feel angry.

How could 'my' child go through this?

How can I make her pain go away?

How can I help my wife and daughter Lauren deal with this indivudally too because this isn't just Rayannes disease - it's all our disease.

No matter how old your children are they will always remain a todler in your mind...and it simply 

isn't fair...they don 't deserve this hurt.

Rayanne is now home.  She, again, is in immense pain from this surgery.

As we drove home in heart thumping silence the pain is immense.

Hers physical.  Ours emotional.

She will look like somebody beat the hell out of her for about two weeks all the while living like a 'blind person' for three or four days.

She will miss a pay check again for over a month.  

She can't do what she loves to do the most...writing her community column for the Examiner and helping the 'kids' over at YESS.

But she will recover. 

She will be stronger.

She will tell others.

She will start to raise money for her Graves Foundation.

She will try to live as normal a life as she possibly can and wait for Graves to yet strike again somewhere in her body.

And she will deal with it again with strength and determination.

Graves. Will. Not. Win.

The one scary thing she has said to me that simply broke my heart was 'Dad I don't think I'm going to live a long life!' 

I hope she is wrong...very wrong for all of us.

The world needs people like Rayanne Doreen Forbes in it.

So today...I hurt...Kim hurts...Lauren hurts....and I had to tell somebody....thanks for all your kind comments on social media...but mostly...

                                                 ...Thanks for understanding!

Rayanne's blog:  http://www.rayannesthoughts.blogspot.ca

Sincere thanks to the Doctors and Nurses who have helped us cope with Graves Disease. You indeed are very special people. And to every family who has to endure such horrible medical scenarios my deepest respect. The only upside is you become incredibly tight as a family!