Well  Said,  Beth     from  greenie
 
 
In a message dated 7/13/2013 2:36:18 P.M. Eastern Daylight Time,  
[email protected] writes:

Dear Millie and Pat and Marcie and Norm  and Tom and Greenie and Judi, 
Suziq, and Susan, and.....everybody! all our new  combers, and our oldies...too 
tired today to list everyone..but just wanted to  say that the past week, 
reading everyone's post, has been  truly insipiring and helpful. We are all in 
this together. For those  who do not have family or spouses, for younger or 
older folks, people of all  ages, each of our circumstances is 
different....but what we all share, cml,  and it's impact on our lives, fears,  
, our 
capacities, our dreams...it's  quite profound...sharing it means we are not 
alone and united, as witl the  picture Pat sent from the conference she 
recently attended, it just breeds  hope for improved futures, and more and more 
possibilities down the road...we  need to buoy each other when we are down, 
and help each other to stay strong,  manage side effects, share with each 
other whatever we have learned along  the way....so we stay well held....in 
this 
world, and fighting this  illness, there is strength in numbers.  

I wish everyone a good weekend. ..and Millie, those doctors are going to  
find out what exactly is causing what, get to the bottom of it, and hopefully 
 you can get some relief...!!!
18's as Marty would say, Beth


-----Original  Message-----
From: C.M. Houtz <[email protected]>
To: cmlhope  <[email protected]>
Sent: Sat, Jul 13, 2013 11:41  am
Subject: Re: [CMLHope]


 
Hi  Marcie,
 
I am trying  to get myself going today.  I woke up with terrible back pain. 
It's  always in the same area and my Onc. says that it's my gall on the 
left side  and my liver on the right.  I couldn't get out of bed, so I took my 
pain  meds and put some heat on it and was able to get up after an hour or 
so.   I'm still in some pain, but not to bad.
 
I was on  Gleevec for years and it simply stopped working for me.  I was on 
800 mg.  at one point.  I did have a prescription which helped to control 
the  diarrhea and for the life of me, can't remember the name.  I still had 
to  watch everything that I ate.  I found that anything with tomatoes in it  
was a no-no and other things triggered it too.  On Tasigna, the worst  I've 
had is constipation, and, of course, the liver problem.  My Onc.  still 
thinks it's the gall causing the problem, and neither of us will know  until 
the 
biopsy comes in.  I'm sure he'll do a lot of blood work on  Monday to see 
if I'm still in remission, so I pray that I am.  As far as  memory is 
concerned.  I don't feel I've lost any.  I always did have  good recall, so I 
feel 
fortunate in that dept.
I am a loss  for a word every now and then, but think that's normal for 74. 
 It does  frustrate me, but I find that if I just put it aside, it will 
come to me  sooner or later.  Usually, it's such a simple word or name.  I do  
have good long and short term memory though, and that's a good thing.  I  
also feel that the drugs affect my bones and muscles.  I had arthritis  before 
all of this, but the progression has been fast and now have  polymialgia, 
which is a form of Arthritis.  They do a sed rate check when  I get blood 
work, and have me on prednisone for that.  That can fluctuate  from one blood 
check to another.  Right now it's bad and I can't lift my  left arm very 
well.  It mainly affects me in my neck and  arms...shoulders, etc.  It's quite 
painful, so I just deal with it the  best way I can.
 
You are  right that people don't understand.  There are times I could 
scream at  them, but it wouldn't do any good.  I get told that I look good and 
must  be feeling fine, but they haven't a clue.  It is a life time thing for  
us, and so we do the very best that we can.
 
It is so  nice putting a face on you and the others.  I am going to print 
out the  photo's and make a small album of all of my CML friends.   

You take  care, and we'll talk again soon.  I find that in the past few 
days we've  been able to open up more to one another and that's a great thing 
for  everyone.
 
Love,  prayers, and many hugs,
Millie

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