Journal

What a fun couple of days I have had, not.  First I get to do all of the testing with the opthamalogist and the tech tried to play little tricks on me.  I had to explain to her that with the MG my eyes get tired very quickly and each slide at first would look clearer than the other, then the eye strain would come in and it would get blurry.  She replied that was good because she was trying to trick me and beginning to think that I was crazy, thanks.  When I leave with my eyes dialated I felt like I was tripping without the fun side effects.  (I was young and wild once)  Also my right eyelid finally did the droop thing.  I looked really strange.  I was happy also that the eye doc validated the prisms and yes, they are MG related.  The neuro's said couldn't be MG.  He told me that they looked at different parts of the disease than he did and the fact that I was seeing prisms was that my eyes were VERY strained.  He described how the eye muscles work and what they are doing at the time of the prisms.  It was nice to be validated.  I knew it was from the MG because the Mestinon would clear it right up.  I'm starting to think that a lot of the other symptoms are MG connected also.  I mean really, how much do they know about this disease?  Not much funding for reasearch on one of the rarest autoimmune diseases.

All of that eye exercise had me in bed napping for a couple of hours and dragging the next day.  I now know why I'm not allowed any exercise.  Who would think that just using eye muscles would have one so tired and down?  Not me.  It's good that I found this out too because the rebellious redhead that I am almost bought a beginner's yoga dvd.  I knew the intermediate was too much, but I thought I could drop down and not tell anyone.  Forget that one.  I'm going to try short walks and that is it.  Since I have the generalized form and it attacks all my muscles, no pushing it for me.  I have always gotten the use of my arms and legs back, but it is a scary feeling when you cannot move them, paralyzed.  Rest is the only thing that you can do at that point.  I'm so darn sick of resting!!!  I should be the most refreshed woman in the world with all the resting I have to do. lol

Yesterday was the pulmonologist visit.  So sick of all the MD's.  I was so tired too, I would have given anything not to make the drive; especially after they call and switch me to the nurse practitioner.  I knew no asthma then and darn't I was tired but I made the drive because of this whole disability thing.  She tells me that I do have asthma, not another dx.  I told her that I thought it was the MG and we really needed to know the difference because it was critical to my MG treatment.  Since I was just over the positive readings, she talks to the doc that rules no asthma.  But I have to come back in 9 months.  What?!  Why do I need to come back?  $$$$$  So, I get to drop a dx but not a specialist.  How can you hold down any job and see all these people?  I know that I have a few more dx's than some but I don't know how people do it and who the heck they work for.  I know no boss that would have allowed all of the time I would have needed off these past couple of years.  I wouldn't want to employee a person that needed that much time off. 

I'm feeling like this is a gripe fest, so let me get this little gripe out.  I was watching the news, show that is supposed to inform me of things that I do not know as of yet.  They throw out the stat that 1 in 7 American families went hungry last year.  Number one cause-poverty.  Really.  Talk about overstating the obvious.  Hmmmm, most people didn't have food because they didn't have $.  I don't know why, but that went all over me.  I mean it's the news, how about some of the other reasons.  Maybe discuss outliers.  Maybe even tell who the heck wasted all the $ on a study like that.  The best findings are the number one cause.  I'm just sick of the news and Sarah Palin.  I remember when I was a kid and watched the news, totally different.  Noone care which star was having a baby with another star.  Which sweaters will be hot this season.  What are the best gifts to buy.  This is not news people.  I know, advertisement and the audience.  We are the audience, must take some blame. 

OOps.  Forgot to tell you, call in appt with Duke, I'm now on 40 mg prednisone which is great; but I found out I will probably be on this amount for the rest of my life.  The very least amount is a year.  Bummer, but I am determined to be done with this when the Imuran kicks in.  I don't mesh well with this med.  Getting the night sweats back since the drop, could be coincendental.  This is the third day of the drop to 40 so it might get better in a few days.  My stomach is still tore up.  Gained more weight also.  Guess I will keep gaining since I can't exercise.  Maybe this will be the true test of my vanity.  I always profess that I'm not vain, but I have always been in top physical shape.  Really easy not to be vain when you are in that position. 

That's the general update.  Hope everyone out there is having fun and not stressing over the holiday's.  It's really easy not to stress when you don't have the dough to do.  We are keeping it simple and sweet this year.  No big productions.  Hope you all have a wonderful weekend.

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