The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 495. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    DEE11 Registered Users
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    Is anyone getting email notificatons ?

  • 496. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    buddyrider Registered Users
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    Hi Dee i am getting email notifications for all 3 threads we have, i think you can check which email notifications and set it up from your profile page eh... have a wee look i think it says 'email notifications on a tab in th eprofile bitty.

    pauline x

  • 497. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    Emily87 Registered Users
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    I've been getting the notifications. I think most of the posting is being done over on Part Three though

     

    http://community.lls.org/thread/4810

  • 498. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    Registered Users
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    I'm getting the notifications now. I wasn't getting them all day yesterday!!!

    Mimi, I LOVE U!!!! U r the bomb and I can't wait to get down there to see u

  • 499. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    Registered Users
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    ok  i am getting posts or emails from this part two link   not part 3   so where r we supposed to go?????

  • 500. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    buddyrider Registered Users
    Currently Being Moderated

    hey guys i think we need to decide which thread we are all going on, as i believe we are all getting confused as to where to post. I dont mind either, as i get postings for all the threads, but for those who are not getting the posts for the 3rd thread, well i am worried they will get lost and left behind us all. and i dont want to loose anyone lol... so could we make a decision on wether we all move to thread 3 to post! or to stay here thread 2! i know it makes no odds, but its for those who are not too computer aliterate (and i dont mean that in a bad way xx) i just want to help thats all..

    natalie hows your daughter doing?

    Dee hows your hip pain today? i hope you are taking things easy.

    Patti i hope you are having good family time, catch up when you get back x

    Mimi oh my gosh how my fingers hurt lol...well i am back at work and all going great, glad to be back

    denise, sarah, emily, kay, linda f, errrrrrrr!!!! oh my wee brain has gone blank....so everyone i hope you are ok and taking care of yourselves.

    from wee p x

  • 501. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    DEE11 Registered Users
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    Thanks for asking Pauline but its there but not as bad.The issue  is all from  the spinal cord ..Last friday i called my onc and left a message with the nurses voice mail..no call back then agn this pass weds no call back then agn today no call back.Just wanted to know my cbc date .I,m getting so frutsrated i even asked her to call me to tell me why she is,nt calling me.My husband thinks it was the trip to Dana Faber..the onc there said i need to have a cbc evry 4-6 weeks..and the onc/hem should do it not my pcp who i have gone to in the past.So it looks like the pcp will have to do it yet agn.My appt. with the onc is the 26 and i will discuss the situation with him.Im sure he is unaware of the nurse not calling back.I,m really really fed up at this point.The break through pain is bad enough but not even to get a call back.Patti i know you went through this and maybe some others but there is no excuse.Patti i know you were switching p/c,s but i havent heard from you since i hope your not lost in cyber space.

    Denise how are you and Sario were are you..Sarah hope things are improving for you and your family...

    I,m not in the best frame of mind and feel lioke throwing in the towel doc.wise....Its been a circus of events..yet all this time no answers.Heck i can treat my symptoms at home and with pcp...i have a good mind to call administration of Mass General northe shore and ask if there phones are working and if so then why is,nt the nurse ????lol  gotta yuck it up while ya can.....cant wait to hear the reason the 26th..tata and sry to vent.

  • 502. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    buddyrider Registered Users
    Currently Being Moderated

    hey Dee i am so saddened by your frustrations regarding the nurses not calling you back, heck thats their job....jeez i know it can be busy for them and i know as i am in that line of work and you have to follow up on your patients....i am madenned by them not even returning your calls ... if i was your nurse dee i would certainly return your call.... oh my goodness shame on them....no wonder you feel like throwing in the towel....but you must not and i know it is difficult Dee, but hang in there girl eh x...Patti is visiting her daughter and should be back with us later today..  Keep strong Dee i know you have probably heard that said to you a million times already, but you have too...ok x...

    much love wee p x

    p.s. dont be sorry Dee you are entitled to vent thats what we are all hear for, is to listen and be there for you as you have been there for me in my wee fits of venting.

  • 503. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    DEE11 Registered Users
    Currently Being Moderated

    Thanks Pauline and Emily,, for the support..i did email the cancer center and within 15 minutes i recieved 2 calls.They are aware of this person not returning calls from what i could make of it.Now i feel funny like i got this person in trouble.But see what happens they will do a cbc just before my appt.Thats all i wanted to know.

    This pain i believe is more nerve than bone...my range of motion is great ...but the sides and the groin and the back,,either pain or numb like( my head lol) so on we go...i know this is so dragged out and i,m probably boring more people than i know.Usually when someone asks me how i,m doing i  just reply ok.Except here on the forum>>are,nt you guys lucky lol...Without meds day 2 is bad day 3 is so unbearable if there was,nt something here to help i would go fruit loops.Its been consistant for sometime and it seems the more doc i see the more confused i get.But i know somehow somewhere,someone will say "hey i know what it is "? In the mean time thanks for the laughs  and support ..and we,ll all welcome and end to this.tata have a gr8 night,Hope everyone who has been MIA pops in.~~~~=D

  • 504. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    Registered Users
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    thanks wee p... I am great and so is izi,,,, she has spent this week home with me and robby,, Robby just went back to work today... We decided on Monday, while talking to a social worker that Izi is going to trust us and that we are making the right choices for her...she has done well with accepting these new rules, which none are too much to ask of her.... the dr had recommeded meds, but we decided to turn them down for  now to see if making changes in her everyday life will be enough to relieve some everyday stresses....it is going well..finals are next week and we arent sure if shes ready for them considering she missed two weeks of work........yeah, boy does time fly, huh...... ya know.. i just added up the months.. today is the 7 month anniversary of my ET DX!!!!!! omg time does fly!!!!!~

    I have been out all day with izi, juggling phone calls, w drs and lawyers, ect.. so I feel ssssooooooo up tight now!!!! Believe it or not, I started this [ost this AM!!! around 10.... Didnt get back to it till 6...

    i need to right an ode to joy about my life!!!!! ahhhhggggg.. and if you only knew how part of my day went while I was out... I swear, people dont want to work, you think that they would care more about their jobs, considering I am eyeballing it because I am UNEMPLOYED..... and yet I still have to deal with unappreciative employees.... ok I have done enough ragging for a week....

    i dont know where I was really going in this post and now Rob wants the laptop.. so I am outta here... loves and hugs.. nat.... besos

  • 505. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    buddyrider Registered Users
    Currently Being Moderated

    saying 'ok' is ok lol...i say it regular, i guess it is an easy word to say... my words are 'i'm fine' ...so much easier than telling all..eh!..even when all you want to do is tell all....but we all must get it out some times eh...and Dee we will never get board of you, so dont worry on that score ok...my friend, i just hope you do get answers you so so need...

    love wee p x

  • 506. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    buddyrider Registered Users
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    good stuff natalie, she has a very surrpotive family around her, which will stand in good stead for her future.  well done you x...

    gosh your day sounded hecktic ... mind and slow down and get rest natalie....Time does fly... i am also 7 months from dx....lol

    well i am off to bed now

    good night all

    wee p

  • 507. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    memy Registered Users
    Currently Being Moderated

    DEE,

    AMEN ! That you finally got a return call. I know it's got to frustrate you no end. I'm sorry you have to fight so hard though. So glad you emailed the cancer center and got their attention.

    I'm with you abt always replying "OK" when someone asks how i am doing--it is just a lot easier to go that route......So, Tuesday is your onc. appt and I hope it goes well for you--would love for you to get some proper answers--but I think you're going to another neurologist and i am holding out hope for this doc.

    Not to worry abt telling us what's going on with you--you know we want to know and wish you well--and this is the place to come!

    I emailed Sarah last night and hope to hear back from her soon. She is always so busy.............Patti is back home and is learning her new comp. that she got from one of her daughters---she's in cyber-confusion now!

    I slept wrong this afternoon when I took a nap and my neck is mad at me! it will get better the more i move around--i must have slept really hard....I have been doing well lately and getting a lot accomplished--that's always a good feeling.

    I have been getting email notifications from each thread now, but I had to keep resetting my "preferences" on profile page (I think that's where i was) The main thing is that I did it on my own and didn't have Chris' assistance--that's a big step for me!.....The only thread i was having probs with was Part 3 and it seems to be working fine now. I slept all afternoon and when I woke up, there were several email notifications ---but I see now that it is for Part 2---i will have to go to Part 3 and see if there are any new posts.

    As far as which thread y'all use, it doesn't matter to me, i will find the posts wherever they are.

    Have a good evening dear and a great weekend----I'll be around....hugs and blessings........m

  • 508. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    Registered Users
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    I feel like I am having withdrawals from this site.....I haven't had much time to read or respond to my friends!!!!!!!  Its so sang slow to type on my cell and Robby is hoarding the computer........I hope everyone's weekend is starting out right....hugs and besos......te amo, Nat

    Sent via BlackBerry from T-Mobile

  • 509. Re: PART TWO living with MPD's...PV, Et, myelofibrosis and cml
    laurandavid Registered Users
    Currently Being Moderated

    11 days until my appointment with the mayo clinc. My doctors name is Dr. Rivera, I am pretty excited he has actually written some research papers on ET!!!    I have been keeping busy and havent thought much about my last appointment with my onc.   Hubby reserved us a "parlor suite" with and ocean front view on the beach in jacksonville , he is such a sweetie. Its too bad that my ET is actually giving the opportunity to enjoy some together time .   I hope my parents dont go crazy with two teenagers and a four year old for a week!!

     

    I have started a list of questions if any one on the board with ET has any questions they would like me to ask Dr. Rivera please let me know , I will ask away. 

     

    They have already been great I got a huge packet in the mail with my appointments and lab work , a courtesy phone call to ask a few questions about my current health and if there was anything they could assist me with.

     

    People I work with give me an odd look to be so excited about seeing an oncologist and if I step back and think about it , it must seem pretty odd. I hope everyone has a good weekend .

     

    Laura

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