Journal

I think I need to just sit and read through all my journal entries in order....I will see ups and downs. Times when I felt full of thankfulness and times I felt miserable and mistreated...times I felt like just giving up.  I wish I had started as soon as I was diagnosed, or even before, so I could go back and laugh at my own ranting that I didn't have narcolepsy and my doc was nuts.  I would have written about my initial concern that I wouldn't be able to take care of my husband as he gets older and deals with more and more artheritis. I would have written about the fear of a "progressive disorder"...I would have written about sorrow for losses I endured due to misunderstanding...welll actually I think I did start writing about then...I have gone through denial, anger, bargaining, depression, acceptance and back to visit some stages a few times...I have watched my family members go through the same stages...some still in denial...sometimes their anger was directed towards me-as mine was sometimes directed towards them...at the conference they alluded to the stages of grief in a few workshops I attended, but I think maybe they assume everyone there is familiar with it...I think they need to have a workshop about the stages of greif...and how the stages are acted out in the family as well as the individual.  I think I wrote that in an email I sent...I even have a suggestion of a family therapist I know in VA (where the next conference is scheduled) who would do a great job presenting. My "revelation" which is not a new one, just a renewed one, is that it is all ultimately about forgiveness...we go throught the stages and back and forth between them...and our friends and family do too. Ultimately we need to forgive ourselves and them for just going through the stages...that reframe could help a lot of families heal. Love to all who take the time to read this. If you do please just leave a note to let me know you did-thanks. 

When i have my doc appointment this month I will ask again about another med. I can definately say that I am doing welll enough...i manage...on the scale of 1 to 10, 10 being totally awake I easily mantain a 6- 7 most days...I just want more! Just a bit more...I feel like I am living at the minumum...functioning relatively well...usually enagaged...welll more like swiss cheese engaged...in and out through out the day, but enough to piece together a pretty good picture of my day. I do remember those several weeks on anphedemines...they were great...I felt good. Not high or manic or anything...just good and strong and healthy and creative and motivated. I felt like the picture i have in my head as "how I used to be"...My doc won't prescribe me stimulants because i had such a serious reaction to the anphedimnes and he said they were the class least likely to cause BP problems...and because I do report being functional...Maybe I'll ask about adderal or something...I just want a little more to give to living.  At the convention they showed charts with the efficacy of the various medications....of course none brought the patient up to normal ( whatever that is) various ones brought people closer ( Provigil actually was the least effective according to the chart-by the way-making me thing docs listen more to drug reps then to research-I know- big surprise) Anyway, I get by with a little help from my friends, 5 hours and green, and low carb monsters and of course my best friend Xryrem...but I am not satisfied...I want more...gee i am smiling to myself thinking is there anyone on thei site that can't relate to that!  On an entirely different note...I am now wearing size 8...interestingly though I haven't lost a pound. I suspect that with the high protein diet and increase calcium perhaps...I traded fat for mussle...and shape shifted...That's find my me...oh and a while ago I realized it was really ease to go from a size 10 down to a size 8-all I would have to do is fly to the UK!...hey guess what. Writting has done it work...my spirit is lighting a bit...OK then...(of course it could be the diet pill that I gave in and took an hour ago too) xxoo

OK, I am finally really back on track after the conference-as in several "good days" in a row.  The doc had given me that diary to fill out with what I ate and when I slept, etc, etc, etc...but the only thing I really see is that going off schedule, knocks me off and it takes a few weeks of sticking with "my program" for my body to get back on track.  Makes me feel like an ol' lady. I am fine as long as I eat the same foods day after day, at the right times.  I need to go to bed and wake up the same time everyday. I need to drink a 5 hour ever day at about 9 a.m. You know we ol' folks need our routines.  That said, I am happy to be feeling well. I am in denial that my son and daughter in law, and their very large German Shepard are moving in today.  I don't think that I have quite wrapped my mind around that...I look at the room set up for them and and my pending granddaughter and I am in awe. There is going to be a brand new baby here in just a few weeks.  I already feel bad that I can't help out at night...but with the xyrem I could sleep though a dozen crying babies! but I can help during the day.  Rocking a sleeping baby is something I could handle even at my sleepiest! Did I have a purpose in this journal entry...nope, not really I guess...just feeling chatty. Have a great weekend all! xxoo