Post
by February » Fri Oct 31, 2008 11:35 am
Aww guys, you made me cry again *lol* not hard to do but good tears this time. It helps to hear sane people (aka people outside my family) tell me things like that.
The one roommate my dad had at the one hospital stopped me as I was leaving the room- this guy I think I mentioned him pages ago- is only 37, has a wife and two kids and has incurable cancer. My mother gave the staff fits while she was there and this guy heard it all- and he was in the room when we signed the advocacy forms, and on the way out as I'm leaving with my dad, with his seven bags of trach supplies to take him home in a taxi alone because no one else would do it- including half a dozen able bodied members of the immediate family who can drive (my poor husband HAD to go to work that day- the next day he spent 12 hours with us at the Oncology clinic, etc, at all the appointments) this guy says to me "Hey, your dad is really lucky to have someone like you to advocate for him. You're a good daughter." This man was a stranger- but his kindness has stayed with me and I have not stopped thinking about him and his family. His wife was so beautiful but her eyes were so sad, it haunts me. No one should have to go through that.
Wombat, I have to tell you that I am blessed already. The best medicine for me is knowing that I have literally done it to the best of my ability- I went until I dropped, repeatedly. Between end of July and beginning October, I lost consciousness three times- twice I was home alone. I just dropped. first time it happened I scared my poor husband half to death. He was just about to dial 911 when I started coming around, he said he was shouting my name at me and I didn't respond. So when I say that I have done all I can do, I mean that not only emotionally but literally, physically.
A bit of news on my own health- the specialist after 2 months of trying to fit me into a classification wants me to go in to see the genetics people at this point. I haven't decided if I'm going- I have to see if insurance will even cover it but since they still feel I'm a potential candidate for the eye surgery- if the surgeon feels he can do it without all that other stuff- I think I'm going to gut up and go for it. My vision is so bad these days, I can't do things like read handwriting in regular pen (sharpies only) I can't read books- I can only read on the computer. I was supposed to go to the low vision clinic but again- none of the aids they sell are covered by insurance.
Thing is, I just really need new lenses in my eyes. the question remains whether or not the flawed structure of my eyes can stand up to the surgery. But being that I'm going to be totally without any functional vision if this keeps up- at this point I just have to dig deep and find the courage to face the fear. They think they can give me back some decent vision- I can't be a burden on my husband and family by letting my fear hold me back.
It's hard to talk about. I'm pretty brave medically speaking, but the eye thing freaks me right out. I had said "never, no way, ever" when they told me what could go wrong- but at this point my left eye is no good to me- if they do the surgery on it and the worst happens- well I'll be visionless either way. They of course do one eye at a time.
Normally this would be no big deal- they do lens replacements by the millions every year. But my freaky eyes are the problem.
I had to laugh though the specialist said to me "ooo, you are hyper-deep" she meant the anterior section of my eyes, but I said "Well I've been told I was complicated but I didn't know I was hyper deep!" It's a great running joke now.
I just get so freaking frustrated trying to run the house with my eyes like this. It's ridiculous how much you take your vision for granted until it starts to go. Unreal.
xoxo to all and thanks again for everything
Hey Susi, if you're reading this how is your back healing up? Wombat, how's the leg? I think of you guys and your struggles more than you know!
love
Bru
Two things stand like stone:
Kindness in another’s trouble.
Courage in your own.
~Adam Lindsay Gordon
"...and only fireworks will light the sky at night
for all the world can see." ~Keane
At least it is someone other than YOU who is having to do it.
