reddutchgirl's Journal

I have felt bad on that prednisone for so long now that I have developed some very poor habits that I should be ashamed of but for some reason am not.  I was just too darn sick to care and I guess if I'm caring, that must mean I'm improving.  I know how I should eat, just haven't been nor have I been able to.  I think the Nexium is helping and the reduction (prednisone) has got to be helping.  Speaking of which, we figured out that I'm supposed to drop 5 mg/day.  Long drive, been tested, doc says take 2 1/2 pills/day.  They are 20 mg, that's a 10 mg drop not 5 mg.  I would like to be rid of it today, but have read of the dangers of coming off this drug way too fast and don't want any part of that.  It's the weekend and I can't place an emergency math call to the doc and she had said something about every other day at the end of the taper; so my husband and I decide that I should take 2 1/2 pill ever other day and three on the odd.  Yesterday I take 3.  Before my decision to take 3 I notice a rash on my stomach and I have the biggest cold sore that you have ever seen. 

I also just dropped and took a four hour nap the day before.  The trip was fun with my mom and sis, but it was exhausting.  My son actually woke me up and my husband couldn't get me up before he left for week.  I just passed out and didn't even realize that I was going to take a nap.  It was one of those deep, deep sleeps too; because when he woke me up I didn't know who I was, where I was, anything.  For some reason my mind in that state tells me to go to the kitchen quickly as possible although I don't think it meant for me to bump into every wall on the way there.  I just start unloading his backpack and lunch box on auto pilot until I woke up.  I don't think I actually woke up until I ate something and took my meds, it was weird.  My son usually doesn't wake me up because I like to be awake and watch for him when he gets off the bus.  We have a very long driveway and I worry.  Thank goodness we live in the country and know all of our neighbors.  I can't stand this slow internet, but it is worth it for my family to be safe. 

I'm thinking of documenting all my experiences in the doc appt's from a sociological perspective, but I will keep all of those locked as private and show you all the finished project.  I know that I wanted this journal to be raw and truthful and it is, but you don't want to read this one from the raw project.  I'm just saving your time.  Heck you may not want to read it from the finished piece, but I will post it for those that do.  I was just thinking about all of the stuff that we have to go thru, the song and dance.  The road to diagnosis.  The pharmaceutical merry-go-round.  The financial burden.  The extensive and invasive testing.  Who the heck could hold down a good job with more than one chronic disease?  Just going from specialist to specialist is tiring enough.  I don't know about you all, but I really don't care to meet any more new doctors, just don't care.  Of course each one has an opinion about your other disease/conditions that are not even in their field.

During the Duke appt. I meet a cocky new resident that wants to know how I got polycythemia vera.  I told him that was the million dollar question but there have been cases tied to overradiation.  He procedes to tell me that it is a wrong dx since I haven't had a bone marrow biopsy.  I could have told him that the hemo's are trained by reading our blood every month that they don't need the bone marrow biopsy until we get to the spent stage, but I was tired and just rolled my eyes at him.  I told him that if he would like to question a dx that I had for 2 years he could call my hemo that ran his blood tests for him.  He dropped the subject.  They want to be the specialists, specialize in one thing and make the big bucks.  Leave the other specialists their field.  You have enough to handle with my MG.  The other specialists I see did the same thing with the MG.  None of them thought I had it, so I was wondering if I even did and when I found out how bad off I really was with it, it was quite a shock.  A shock big enough for me to take prednisone and Imuran.  I don't regret that decision though.  With the options I had placed in front of me it was the 2 that I thought I could handle with my lifestyle the best.

Lifestyle, gotta get back to my old better habits.  I'm still down about the no exercise, but I can do other things to improve my life and help all of me to heal.  Diet has got to improve.  Meditation time added.  Fun times with my family is a must.  Journal thoughts, even the negative ones.  Sing and dance when I can.  Enjoy the fresh air.  Marvel at the grace of the hawk flying overhead.  Have gratitude for all of the wonderful things I have and people that I know.  Live for today.  Find a way to get some acupuncture.  Continue to avoid negative people (I have some weird coincedences to tell you all of in another entry).  Love like there is no tomorrow.

May all of you have a wonderful Sunday full of peace and laughter.  Thank you for taking the time to read this and I hope that you all are pain free, if even for one day.  Love, Peace, and Courage,  Kim