Re: Disease progression -

[Guest guest]

You know what Janet??? I think you should tell that Rheumy just what

you told me. That he is nice but you aren't sure if he understands

how you really feel physically and emotionally. Tell him that you

would love to exercise again and that you never imagined a day when

you would not be able to. I am learning to tell my docs just how I

feel. Today I JUST made it to the eye doc. Had to bum a ride of

course and it was short notice so kind of hard to do. Right now I'm

seeing double as I type. Thank God for the backspace key. He gave me

another eye drop to add to the regime. (7 eye meds now). Normal eye

pressure is 11-21. I scored a record 49.5 in the left eye today. THAT

would be why it was hurting so badly that I thought I might pass out

2 nights ago. I actually made this contraption to divert the pain in

my eye to my scalp by twisting a pencil in my hair and securing it

with a rubber band. Then I could twist the pencil and make it pull my

hair when my eye was throbbing. I took two Tramadols at once and that

finally worked as well as knocked me out around 3 AM. I woke up at

noon with that dang thing still in my hair and I wondered what

someone would have thought if they came in and saw me laying there

with that thing in my hair. Would they have thought someone was

torturing me??? lol. (I leave my door unlocked and keep the phone

near me in case I get in trouble when I am alone). I told my eye doc

and his tech today that I never knew eyes could be so much trouble. I

had heard of people going blind but I thought they just lost their

sight. I did not know that all of this pain could be involved. My

right eye is healing....it had an ulcer on it which is now just an

abrasion. My left eye is just having pressure problems due to the

inflamation which goes up and down as well as the steroids used to

treat the inflamation. I have two different regimes now...one for

each eye. I am going to get to make me a chart that I can use

each day and check it off when I do what I'm supposed to do as far as

the drops go. It's an all day thing. I am so proud of . I feel

so bad for her. She does not have much of a Mom now. All I do is lay

around and take drops. I can't really drive or do housework which

means I am asking more of her. I feel guilty about it. She should

have better than this. But her teachers say she is doing better than

last year...that she is enjoying stepping up to the plate and helping

out so maybe I should not worry so much. I just feel guilty. That's

Moms, huh? lol. I try to be strong for her and yet let her know that

it's hard but I won't give up. I hope your aches do better soon and

you get some understanding. That is so important. Thanks for the

note. I'm thinking about you... Love Betz