It’s getting better, we think, but there’s been another discovery

Darn allergy season.  It makes it difficult to know if he is feeling better or not right now.  With these silly allergies, all of us – not just him – have swollen eyes, are tired, and get frequent headaches.

He’s acting better and he’s got some of his spunk back.  He’s been joking and playing around more at home lately.  I’ve applied for a new job that is a few blocks away from home and pays a third more than my current job.  I know just the thought of getting the job is exciting to all of us.

The idea is that I get a new job that will cover all of us for health insurance so he can finally change to consultant work and start working from home.

Testing revealed that he may also have Addison’s disease.  We are still researching but otherwise, it’s been a good week.  It make us hopeful that it will continue.  We are keeping positive!

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No, you don’t have that right

So, it’s been a tough few weeks.  Our insurance changed and he lost all of his doctors and specialists.  We still don’t have his medication correct, so this is a big deal.  We were able to finish out the “rotation” with everyone and they all seemed very positive that we had chosen good “replacements”.

It is just difficult.  he doesn’t deal with change very well anymore.  It is so weird watching my strong, confident, and independent husband go through this transformation.  I am angry, scared and sad about it.  He’s become co-dependent and sad.  He has lost almost all of his self confidence.  He walks with his head down now.  I hate that.  Unfortunately, I can’t tell him this.  He doesn’t need me to tell him what he already knows.  I get to tell him how wonderful he still is and how much I love him and the kids love him and how we are here to help him.  I still need to vent though.   Just as he has the right to vent to me about his being sick, I have the right to vent to anyone besides him about how much life has changed for my family and how I feel like I need to have a mourning period for the life we have now lost.  I tried to do this recently with a family member and I was greeted with, “I know, I saw a photo of him and he look so different.  He doesn’t even look like the man I know. It makes me feel so bad. I don’t know what I will do next time I see him.”

That immediately pissed me off.  You know what?  No!  You don’t have that right.  You do not have the right to vent to ME about my life!  Fuck you.  You are not here.  You are not struggling with sleep.  You are not having to watch him struggle to put on his damn pants.  You are not here to massage his muscles and see all the skin lesions, watch him writhe in pain when he gets a massive cramp.  You aren’t watching him deteriorate right before your eyes.  So, no, fuck you.  You don’t get to tell me what to be grateful for right now.

Another friend of mine just went through watching her mother die of cancer and she found an article about how to talk to people with ill loved ones.  It was perfect and awesome.  There needs to be a book written on this….  The article described something called the ring theory.  The idea is that the person that is ill is the center of a series of concentric circles.  That person can bitch, moan, and mouth off as much and to whomever they want.  They get to tell everyone to fuck off and die.  They have earned that right.  The next ring is for the significant other, children, those closest to the sick person (those people in his or her daily life providing care and support).  This person is allowed to bitch, moan and groan to anyone except for the sick person.  The next circle is for parents, brothers, sisters living outside the home, etc.  This group of people can bitch, moan and groan to anyone except the people in the smaller circles.  And so on and so on.  Basically it is the idea that there is a hierarchy of rights when it comes to illness and the closer you are to the illness the more rights you have.  However, you NEVER get to moan and groan to someone on a smaller circle than you.  It is comfort in, dump out:

The Ring Theory

The Ring Theory

(http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407)

This is perfect. Do you think it would be pretentious of me to print it out and mail to all of our family and friends? Then again, I really don’t give a shit if it is perceived as pretentious.  I think I’ve earned that right.

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