Re: Trudy - SSID Form

[Guest guest]

Trudy,I'm sorry you're in so much pain sweetie... you overdid it again. It's hard to realize we have limitations but we do. On that function evaluation form... On the things that are ify.. mark NO. If you can go to Wal Mart but not by yourself it's a NO. If you can do the laundry but you need help from the hubs, it's a NO. Anything that you cannot do all the time by yourself every day becomes a NO. And you're not lying either because some days you can and some days you can't. Just like now, you've been in pain for days.. Can you do those things right now in the pain you are in... if not, mark those boxes NO. Later on, letters from doctors will

help but you don't need those until you get to the 3rd phase of this process.About the hubs... they all shut down for awhile sometimes. Bruce almost lost it with me today and he never does that. He spent almost all day yesterday on his day off, driving me 48 miles one way to a funeral for someone he had never even met. He went for me and I was sure glad he was there cause I was a mess. But today, after not too much sleep, I was in pain. I called Wal Mart to check to see if my Norco was ready and it was, and I was also out of smokes. Now, here at this house the Wal-Mart is SUPER close. Like maybe a mile and a half if that.. at the old house it was a 15 minute drive. But I was in pain. Bruce leaves for work around 2 in the afternoon. This was about 11:30. I told him my script was ready and I needed smokes and he told me where the car keys were.

Then he asked me if I was okay to go on my own. My response was not "no" it was more of I know you don't want to go so I'm going kind of thing. He then asked if I was in pain, I said yes, then he said that then I wasn't okay to go on my own and he'd go. But it was something in his voice where it sounded like he was thinking that I'm becoming a pain in his rear... wait, becoming? I always have been! But it happens and they get over it. Trudy, he's scared. He's scared for you. Guys don't deal with that too well. Actually, they kinda suck at it. Just be nice when you can and when you're in pain let him know you need a little space and when you're in pain stop doing things like a crazy woman! Don't be pulling up tomato plants and wearing yourself out in that sweltering heat. Go inside, kick up the air and relax. The pain isn't going to go away until you rest and let

it ease up. And when it eases up.. rest some more. Hugs,Teri From: Trudy <trudykinsey@...>Hcv < >Sent: Thu, July 29, 2010 11:52:03 AMSubject: [ ] (unknown)

Hi! Everybody ! I haven't been on here much cause I have been in too much pain. Monday I felt good, got up early while it was still cool out. Sooo..I decided to pull up the tomato plants that had succombed to the excessive heat . Then I moved a dozen cinder blocks around( that was the culprit of my pain) AND then I mowed our large front lawn area. Been in pain since. Yesterday was " Walmart Day". LoL. Last night was the worst pain I have everhad! Two Darvon, two hours apart, my usual two Gabapentin, all barely dulled it. Finally my sleep pill and I hurt bad today. And today is " laundrymat Day"( no machines in RV). Tomorrow is first appt with new Gastro to schedule new biopsy and do labs...two hr drive each way.

Now I have another question. I received my first packet from SSID. It is the " function evaluation " questionnaire. It asks about everything from counting money/ checkbook, cooking my meals,caring for pets to grocery shopping and driving. It is yes/ no check the box questions. Is it appropriate to attach a letter of explaination at this time?? Yes, I do most of those things. But in a very limited ability and suffer from it for days. These routine things now consume my life and leave no room for LIFE. And by the time they read this form it could have changed drastically. I have been worsening rapidly ( and we aren't even talking about what it will be on tx!). Simple Yes/No doesn't begin to answer it. How EVRYTHING has been altered because of short-term memory/ concentration issues...yesterday I walked in with new meds from pharmacy and put them in trashcan...I put the empty s cup on counter. Discovered my pills were missing last nite and tore

everything apart looking for them. Cried when I discovered what an idiot I have become. Things like this are constant. I have to set alarms to cook simple stuff. Some of you can soooo relate.

What to do about this first form?? Or do I just check the boxes cause I know I'll be denied this first time anyway??

Quess I need to talk openly with my GP about this so it is documented?? Nothing he can do about it so feel stupid bringing it up.... But keeping quiet will make it hard to prove.

Please advise, I don't know how to handle this the best way.

BTW, my dearest hubby is also shutting down a bit. Seems like he has heard so much, so long that he is immune to it now. Feels like this disease is definately putting distance between us. So even we are experiencing what I have heard from several of y'all . I'm sure he will be understanding when tx starts. It will be his wakeup call

Enough of this novel...( see what happens when we stay off-line too long...).

Trudy. confused and sweltering in OK

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