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We have a new member to our cml family who is having trouble figuring out how to log on our site


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#1 Guest_billronm_*

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Posted 30 November 2011 - 08:05 PM

Hi Everybody, Missyme3 wants to start a discussion so I told her I would post this and she can reply just by saying Hi then we can just keep replying to her until she gets the hang of it. 

                                                       Love Billie



#2 Guest_billronm_*

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Posted 01 December 2011 - 08:57 PM

Hi Missy,

Oboy I'm replying to my own reply that's like talking to myself which I do all the time. Thank God I have a dog.it also helps to have someone to blame the Sprycel gas on too. When you read this just click reply Ask your question then when you are done click add reply. And we'll get back to you. Come on guys I'm drowning here. Missy if you can figure out how to send a private message to me you can get this. All my cml family knows what a total computer idiot I am. They will respond but I think they're waiting a while to see how far I'm going to bury myself first. I still am not sure how to send a private message. Just don't get frustrated we are strong and invincible and we can do this.                                                                     Billie



#3 Judy2

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Posted 01 December 2011 - 09:14 PM

Hi Missy. Are you out there? If you are really stuck call The LLS, 1-800-955-4572, and I'm sure they will walk you through the process. We'll be waiting to hear from you. Billie, I don't hink you're a total computer idiot. hee hee.

Judy



#4 pammartin

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Posted 01 December 2011 - 09:30 PM

Hi Missy,

It is confusing at first to get where you need to be to post a question, message or information, but as Billie noted, please just make sure you are logged in and then hit reply to one of our messages and your question, comment, or information will be there for review.

Best of luck and welcome!

Pam



#5 Guest_billronm_*

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Posted 01 December 2011 - 10:45 PM

Thanks Judy and Pam,

  We'll get that poor girl on the board if we have to go find her ourselves. Judy how are you doing? Much better I hope It takes a while but little by little each day we cope just a bit better. And pretty soon you'll be joking about your hemorroids just like the rest of us.

Pammie, How is your bw coming along? What do they say or want to do? You know I don't understand that medical stuff. Have you heard any thing from you're ins co about seeing another onc? I sure wish you could see Dr. Rothman just for a second opinion. I got good news and bad news , Good news first all my test came out good ass test, nuclear stress test, rbc back up,iron good,bcr-abl still 0, weight,nobodys business but no problem there this hanging flesh does tend to get heavy especially around the jowls. But my freaking blood pressure is up again. I got weaned off that lopressor finally so I have to start a new bp med tomorrow and go see my gp in 2 weeks. So it will be at least 2 more weeks before we can head for Florida if this new med works. I even called my accredo pharmacist and asked him if he could recommend something that wouldn't wipe me out so much. He said no he couldn't recommend anything because of the other meds I take for those 2 other health problems I have and my bp being so high! Sh-t it's a conspiracy maybe I'm not ment to travel this year.     Pissed off Billie         lol



#6 Judy2

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Posted 01 December 2011 - 10:53 PM

Hi Billie. So glad about your good news, sorry about your bp. Do you trust any doctors in Florida? Is there any chance you could still go and have a doc down there monitor you?

Hugs,

Judy



#7 pammartin

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Posted 01 December 2011 - 10:58 PM

Billie, so sorry, blood pressure is so damned volatile, you never know what actually triggers is and what can get it under control without taking those meds that kick your arse.  You will get to travel, you have too, those boobs want to go on vacation and be free, you just have to jump in the waves to let them have their fun! 



#8 Guest_billronm_*

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Posted 02 December 2011 - 01:23 AM

Pammie,

The one good thing about these boobs is when I go to Sanibel nobody recognizes my face. This is sad but true we moved Rons mom down to Sanibel in May 6 years ago it was so hot. Right after supper his mom went down I figure heat stroke I had to be the only one who knew cpr it was a family dinner so I got on the floor and Ron and I started to administer cpr I had a low cut tank top on no bra his entire family standing around helpless and we worked on her until the ambulance arrived his entire family saw my boobs flailing around all over the place.Ron didn't know cpr either so I pushed him out of the way and did the compressions and mourh to mouth back and forth the way I was taught. I found out later that they don't do mouth to mouth anymore wish I knew that then. I won't go into details but it is sad to say my cpr didn't work which we were trained that it usually doesn't  but it felt so much better at least knowing what to do instead of standing around feeling so helpless at a time like that. But once again all a group of people saw was my boobs bouncing all over the place. All of us women on tkis know that the bra we put on in the morning starts shrinking as the day goes on until we are in agony.Even sports bras don't help. Any suggestions  BB Billie

Message was edited by: Billie Murawski I'm not so self consious now Hugh Heffner never called me even daffy duck and micky mouse snubbed their noses up at me so I figure these long stringy things ain't worth nothing.



#9 pammartin

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Posted 02 December 2011 - 05:52 PM

Billie, you are a hoot!  I am sorry about your mother in law, but gosh I keep thinking of your flailing boobs and can't help but laugh!  Hugh Heffner won't call, you are not 19 and fake blond, you are real, as to Mickey and Daffy, they are so head over heels in love with Minnie you don't stand a chance.!  One thing...........we are supposed to put bras on in the morning?  Oh........uh..........I missed that lesson.  I figured out if you don't use one, then it doesn't have to shrink throughout the day.    Blood work is holding, white count is 4.1 and platelets are still 330,000, so even though I bitched, the 140 Sprycel must be where I need to be right now.  Is weird, I read the posts about CMLers only taking 20 mg for maintenance, guess I am a long way from being maintained!  Have a good evening, since I started the Sprycel again my burst of energy has all but left me, the other night I went to bed at 7, almost unheard of!  I have a ceiling and walls to paint tomorrow if I get my arse out of the bed, if that darn carpet installer doesn't come soon I am going to throw the rugs down myself and call it done.  My wall oven is on back order, so looks like if we could get moved we would be crock potting or roasting in my turkey roaster.  Why oh why oh why did I let him talk me into buying a house in October!!!!!! 






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