Wednesday, June 10, 2009

I hate demerol

Today has been a rough day.  Gess is home, but on pretty high doses of Demerol.  If he would lay down and rest while on it I wouldn't have a problem.  But it makes him loopy and antsy...which is not a good combination.  He is continually up and doing something, but not really coherent enough...it is hard to explain, but it seems dangerous.  So much so, that I feel like I have to watch him all of the time.  He also doesn't sleep well, so he wakes me up several times.  So, the bottom line is that I am exhausted.

And with that exhaustion come much frustration.  Since March he has been hospitalized 6 times.  The pain is getting so severe that it requires narcotic medication at least once a week.  I am worried that there isn't an end in sight.  We know that they didn't get the source of bleeding this time, so it is only a matter of time before it comes back.   The pain specialist gave Gess some new medication to try to help with the pain, but the irony of it is that he hasn't been well enough to even try the medication.  Seriously.  

These days make we wonder how I am going to be able to deal with things when it gets worse. I don't want it to get worse.  I just want to have a little bit of "normal."  And then that makes me feel horrible.  I feel like a bad person.  I need to be the strong one, Gess is the one that is suffering through this and I feel like a complete failure.  **sigh**

6 comments:

Shannon said...

I don't think there is any normal with this disease, for the cytic or for the person who loves them. I wish my husband would read your blog, so he could relate with other spouses.
I think you are amazing!

jordysmom said...

((((((HUGS))))))) I'm sorry. This disease is so unfair.

Stacey

Sandy said...

My dearest Lisa -

1. YOU ARE NOT A FAILURE - and yes I meant to "scream" that sentence. You are a normal person, with very normal feelings -and no it isn't easy for you.

2. YOU ARE NOT ALONE!!! See #1 about screaming - applies here also. Please please please know that you are loved and we are all pulling for you and Gess, not just pulling either, we are praying. Don't give up - pick up the phone if you need someone - there are many of us that want to help, but don't know how, so just let us know.

I love you - hang in there. s

Amy said...

You are by NO means a failure!!!! I would give anything to have a spouse like you! Seriously...you can tell just how much you love Gess. He knows you can't take the pain away or this dreadful disease, but you do give him something that he needs...support.

Hang in there I am praying that you guys catch a break at some point this year!!!!! :)

CFsteph said...

I hate to bring up the elephant in the room but I have noticed that Gess has been hospitalized a lot and has had a lot of bleeding. Has he thought about being evaluated for a lung transplant? Or has he decided no to go that route?

NoExcuses said...

just wanted to stop by and give you a hug. you've been going through a lot. take care.