Progress, I think…

We have our RAI appointment this Thursday.  We…  Well, HE has his RAI appointment this Thursday, but WE are nervous.  It seems like this is a real gamble and no one outcome is the same as the next.

I am so worried.  This is a no shit end to something.  We can’t go back.  Once this is done, it is done.  What if it makes him feel worse?  He does so well trying to keep a positive face and making it seem like he is fine.  I just don’t know how much more he can take.  He is the strongest and most giving man I have ever known in my life and I hope that he can endure this.  I hope we can endure this.

Cross your fingers cyber world.  We are about to go to a place we can not return from.  I hate not knowing what is going to happen.  I am sure he does too.

This disease makes me feel like a bad person

He gets in these moods where he finds fault in everything. Nothing makes him happy and he gripes and yells at everyone in his path. Then he acts like the world is coming to an end and starts throwing a pity party. It irritates me. It makes me feel inadequate – because I can’t get the house clean enough; I don’t make the kids clean their room to the point of sparkling; I sit here and blog; because he can’t find something I gave him 2 days ago……whatever.  I feel like shit but I know it is not HIM, it is days like this that I understand how this disease tears families apart.

I want to just scream at him and yell and be a bitch toward him. Instead, I have to stop, take a deep breath, and remind myself that he is not doing this on purpose.  My kids are dealing with this too and it is so hard to explain to them the best way to deal with it. Will this go away after his thyroid is removed or will it get worse?

Now, what was I saying?

It is so difficult to watch him go through all of these changes – both physically and mentally.

My husband is an extremely intelligent man.  He holds multiple college degrees in Physics, Chemistry and Mathematics but in addition to that, he can rebuild any engine, tackle any plumbing, electrical, or mechanical issue anywhere and if it is on a computer, about a computer or for a computer, he can and does do it.  Watching him work lately is really hard.

His short term memory is slowly slipping away.  Things he used to do routinely, he is forgetting.  He now keeps a little note pad in his pocket and writes everything down.    The other day, he told me that he couldn’t remember the drive home after we passed the High School (just a few blocks from our house).  I tell him something then 20 minutes later, he is pissed off at me because “I” forgot to do/say/check something – even though I told him about it 20 minutes before.

I have always required a strict routine because I am a scatterbrain outside of work but since he has been sick, routine has become hyper necessary in our lives.

He used to be able to solve a rubix cube in about 15 minutes.  Now he can’t hold it because he shakes so much.

He used to coach rugby.  Now he can’t even walk up the stairs to sit in the stands because of the joint pain.

He used to be full of life.  Now he looks sick and drawn.  And sad.

I love him so very much and I wish I could just wrap him up in my arms and absorb his pain.  He doesn’t deserve this.  No one does.

What’s the point?

I will tell you now, if you’ve come here looking for another mommy blogger touting the greatness of the lord all mighty, telling you how to live off of $20 a week and how to decorate your house like the inside of a Better Homes and Gardens magazine, you might as well hit next now.

I am agnostic.  I am terrible with budgets and I steal all of my decorating ideas from those other ladies.  No, I am here because my husband asked me to write a blog for him.

My husband is sick.  Not in that “watches porn and asks me to reenact it” sick, but sick as in we have three specialist doctors on speed dial kind of sick.  He was diagnosed with Graves Disease 6 weeks ago.  He also has Thyroid Eye Disease (known as TED) and suffers from what can only be described as bi-polar disorder.

We’ve been searching all over for more information that may help him, something that may help us not feel so alone, and something that might help us figure out what the heck is going on but there is not much out there or no one is talking about it.  Some things we do know:

Graves disease affects both women and men but women are 10 times more likely to have it.

Graves disease is NOT a thyroid condition.  It is an AUTOIMMUNE disease.  (This is one of my biggest pet peeves.  It irritates the shit out of me when people – including doctors – say it is a thyroid disease.  That is not correct.)

Graves disease is NOT curable.  It will always be present in your body.

In our case, it was brought on by stress – very high amounts of stress (more on that in a later post probably).

Untreated graves disease can lead to thyrotoxicosis (in it’s severe form it is known as a thyroid storm – with a death rate of 20%), heart problems, weak and brittle bones, and death.

Currently, my husband’s disease is untreated…..and he has severe symptoms.  It is scary.  It is joltingly scary.  Every day that he wakes up, I am thankful and more angry at doctors and insurance companies.

He is untreated because he is severely allergic to the anti-thyroid medication and the surgeon and  radiologist are taking their sweet ass time getting back with us about our follow up appointments.  He went to one surgeon that refused to operate then dropped the ball and didn’t follow through with his notes or referral to the endocrinologist.  The holidays came upon us and now all the offices are closed.  We start our fight again next Monday morning with the phone calls and emails and follow up phone calls.

So this is the beginning of our story.  Monday can not get here soon enough.