The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 420. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
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    Dee,

    Glad your PCP appt went well. Sorry for the burning feet, legs and butt. (Jackie had that at the onset of her MS 30 yrs ago) Did she address that with you yesterday?..............Adored the card you sent me--as did Chris. Taking him to Ortho sports med doc today--we have both seen him in the past and is very thorough. His shoulder has really gotten bad. Will keep you posted.

     

    How are the ferals and the inside family?   Sending a great big hug to Nicholas

     

    And to all:  my love, support, care and concern and well wishes are with y'all.

  • 421. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
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    Yey denise lol...have fun eh when it arrives.

    Mimi please let us know how chris gets on at doctors.

    I hope you all have a good weekend and the weather is not too bad for you all and that you may get some warmth...

    well i off to bed, got work in the morning.

    from the wee p

  • 422. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    LindaF Registered Users
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    Hi Denise, I was thinking about you just the other day and wondering how the job search was going.  I got one but it is not a dream job by any means.  I know what you mean, I have NEVER seen the job market this bad before....hopefully something will open up for you soon, I'll say a prayer just for you.  I'm keeping the job I got, but I'm still applying like crazy.

     

    Dee, You my dear are so very sweet.  Thanks for praying for me, it means more than you know, and for always asking after me and everyone else here.  You really are a gem.

     

    Someone here was talking about hot flashes and I cant remember who it was, but I must say that I thought mine were hot flashes and night sweats related to menopause, but as it turns out, they are both strong symptoms of ET.  I have been post menopausal for almost 2 years and still suffer from the night sweats and the hot flashes.  I tend to notice the flashes within an hour of taking my medication.  Since I take it 4 times a day and they seem to line up, I think that it could relate back to the angrelide.

     

    Hope everyone else is doing well.

     

    Nat, sorry you miss your family so much, glad you have some time to spend with them...drink a good glass of wine while you are there for me.

     

    To everyone else, hope you stay warm and dry, your counts stay down and your spirits up.

     

    Linda

  • 423. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Linda K, i just want you to know that i'm praying for your daughter   She must have a good attitude in order to have so much done to her at once. I will pray for you too, as i'm sure you worry alot for her....  take care of yourself too


    Dee, i feel so bad that i didn't even know of the new problems you are having!! I'm so behind here (again!) and i do feel bad about it....

    Burning feet, legs and butt.... sounds pretty miserable!!   Do i have it wrong, or do you have an upcoming appt. on the 25th with a new doc? onc??

    I will be praying for you...... Hope this new problems goes away FAST!!!!  How are your feral's?


    Denise, i'm sorry you haven't found the job that you need, (i know about wanting insurance, so important for us) I will be praying that just the right job comes along for you!! God's timing is perfect!   the waiting is rough on us.... but in the long-run, it's worth it


    Patti, Mimi, Pauli, Pauline, Pegetha, Emily, Colleen, Robert, Linda, (and those i missed here) know that i keep you ALL in my Prayers..... and i apologize  for not keeping up, wished i could have more time to.... but, i hop on when i get a chance and do my best. But i think of you all often and lift prayers for you!


    Take Care Everyone!!  Have a Wonderful weekend!!


    p.s.

    they have me going to the onc. monthly.... and my #'s are coming back great!!   thank you Lord!

  • 424. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
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    LindaF: Hi, I wanted to chime in on those wonderful hot flashes,lol. I've been over menopause for nearly 10yrs now, and when I got sick with the MPD they started again, except they arn't night sweats! I have flashes both day and nights too. I did at one point ask the Dr about this, as I really thought I'd never have to deal with this issue again? NOT!!!!!  it's caused from our MPD's, and also can have something to do with our counts.So I hate having them, but I guess it's something I have to get used to. This is one issue that we know can happen and we are not alone with, but I still get very annoyed as they can be awful too. I'm sorry you are dealing with this also. I do understand this is not fun!!!  

     

    To everyone else: I think of you all daily, and hope you are doing well.    Patti

  • 425. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Pauli Registered Users
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    Hi all!  Just a quick not here.  We have company for the next few days so are busy enjoying their fellowship!  My ankle is better, still some swelling but not much!  Just thought I would let everyone know I am okay and thinking and praying for you all.  Dee I worry about you,  You struggle with so much, make light of it and worry about everyone else!  You are a gem, it is true!

    To everyone else, blessings and a great Sunday!  I'm thinking of you all even if I am not online!

    love Pauli

  • 426. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    Hey there Pauli, you have a wonderful weekend with your friends. and please keep an eye on your ankles ok.  i know you say they are gettin better, but i am worried about what has caused them to swell in the first place!!  please keep us posted

     

    Dee my dear friend, how are you today? i hope you are getting some relief from your pain. you are a hardy lass, and as linda f said, you care more about us and how we are doing..despite all that you are enduring on a day to day basis eh.. you are an inspiration and i love your spirit..hope your weekend is going well

     

    Well i am a bit pissed off at the moment, as i now have a fuzzy head, and slight dizzyness. i not sure if it is just tiredness, general day to day life or my levels have risen...but will find out on wednesday at the hospital eh..... gettting fed up with not having control of my life eh.. but thats the way its going to be eh..so i shall have to make the most of it from now on eh, but it does get frustrating

    any way i hope everyone is having a lovely weekend...

    from the wee p fae scotland

    p.s. a wee question for you all, can you fly with having our blood disorders?

  • 427. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    Sarah great to here from you but would love to hear more about YOU.Hope your doing well and i,m thrilled your numbers a great.I,m also aware of the other stress factors in your life and i continue to pray.

    Pauline so sorry your feeling lousy and we all can understand being frustrated.Just want to have ourselves back agn .We would even settle just a few days a week.Between your headaches last week and now the fuzzy dizzy feeling i hope your doc checks you out top to bottom.

    Pauli also glad to hear your ankles are better ..hows your headaches ?I still have Darrin and Cindy in my thoughts and prayers as well.

    I picked one small paint project last week and still have,nt finished.But i will..i need to feel like i can continue doing what i love ..home improvement and gardening...The cats are just a hobby lol.(expensive one )

    Linda B hows your daughter and how are you ?

    Linda F and Denise...we should all get together and create our own buisness lol.Just have to come up with a plan.

    Looking forward to a hot oil bath tonight( not cleaning the tub after)It helps relax everything and i sleep a bit longer.These pills interupt my  sleep at night.Just like Patti said so tired but cant stay asleep.So the weekend is almost over anyone else with appts, this week good luck and the best of skill..tata all =D

  • 428. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone! Hope you're all having a good weekend and getting some fun and relaxful time in!!


    Pauli, ditto to what you said about Dee!   She is really something else!! (sorry... not referring to you as a 3rd person! lol...) 

    I too hope that you're feeling some relief Dee! Praying for your appt. on thurs. that some new insight will transpire. Many prayers always being lifted for you!

    Your a gem, an angel, a sheriff.... geez!!!!!! and i'm sure much more!! We love ya!


    Pauli, i'm sorry that you're not feeling good, that dizzy and fuzzy feeling is not a good way to be, i will be praying that you feel better, and for your cbc on Wed.

    I'm glad you've slowed down a bit on your karate and stuff (i hope the bike riding too.... if you're feeling dizzy) don't need to take a fall.... hang in there! you'll bounce back!! I can tell that you too are pretty tough!   and by the way.... your Son is really a cutie! the girls must be chasing him! or is he already caught? lol...


    Patti, hope your ankles get better. I hope you get a chance to try and maybe elevate them some??  You seem to always be so busy. Try and take a lil' time to yourself and let others wait on you sometimes..... (sounds like the speech that Dee gave me awhile back! lol....)  But you know what, i did listen and did it a few times, and it was more than relaxful, in more ways than one!!  I'm still praying for your daughter in law and son. 


    Mimi, i'm glad you're doing well (always makes my heart happy to hear that!) you are so sweet!  I hope that you enjoyed Mardi Gras!!!??   I think if i was there, i'd have to go and be in it! takes a lil' pushing to get me motivated to go where it'll be really jammed crowded... but once i'm there, i love it!!

    But at home with your hubby next to you watching it on tv... must be Very Wonderful too!  hope you got to enjoy and relax!   and by the way,... how's Boy-Boy doing?? did he get an infection? 


    Emily..... you have a bday coming up this Sat??  I'm sure you and Mike will have a blast together (or with others..)  I will pray that you'll be feeling really good for that weekend!   fabulous to be Sooo young still!!  Enjoy life my dear!!


    Well i need to run..... take care all,  be good to yourselfs!!      Sarah 

  • 429. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi Dee, looks like we were writting at the same time    ok, ok.....  so you want to know about me! ugh.... you cornered me again!! LOL.... j/k

    ok, here i go....  anxiety problems still going on for me, due to stress (which is also causing insomia, sometimes i wake up and can't go back to sleep for hrs)  still dealing with my husbands disability/workers comp. case.  (they stop the pymts whenever they darn well please! and it's another battle to get it going again)

    And inbetween all that and all his different docs appt., i'm still trying to find a medical insurance for myself. There has to be something else other than where i'm going now, i pray i won't have to stay there forever (it would be too depressing) doc gives me a RX for 30 pills for anxiety, and they only fill it for 15! and trying to get the rest of the refill is like impossible!  don't take me wrong... i'm Very Grateful that i'm able to go there right now,... but i don't want to stay there forever. because not getting the right RX ct. is by far Not the biggest problem there..... (much more deeper  ...)

    I'm also carrying the burden for others which i care about (and their big problems they are dealing with right now) but.... i know i shouldn't do this! I've always been like that, if i care about someone and they are hurting physically, emotionally, whatever the case, my heart goes out to them and i do pray alot, but sometimes i tend to carry the burden like weight on my shoulders, which tends to leave me feeling drained.....

    guess, that's part of the reason i've been more emotional lately too, just too much to deal with everything.... Most of the time i just feel so tired of everything, would Love some Peaceful days without having to deal with stuff!!! (and no more headaches!)           ok.... i'm done! I vented......

  • 430. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    Sarah i know you worry about your family and carry the problems probably more than they do.But remember to take care of yourself and reach out.If you dont then you will not be around to help~~~~~~know what i mean jelly bean.Things will smooth out one way or another.Your fighting a battle and i pray you win.Just know we are all here for you.okey dokey calgal.Hope your resting now ...tata=D

  • 431. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    Thankyou Dee for your kind words. i know you all understand here, it is so frustrating though eh...Thank goodness wednesday is so close and i shall be telling them of the problems i have been having the past week or so.  including my weight loss, so i will try and get them to check my thyroid function too.  sorry guys for the wee moan, but apart from all whats going on, i am ok otherwise.. i thankyou all for being here for me. i would be lost without you all

    How was your hot oily bath Dee? i hope it done the trick in relaxing you. you are a soldier Dee and just keep going no matter what. 

     

    Sarah thanks for your kind words also. dont worry about me driving my motorbike whilst i have dizzyness, it is off the road at present for the winter months. As for karate, i have not felt i could go for about 3 months now.  i am getitng used too listening to my body now, as before i would just plod on and get on with things.  since being dx with pv, it has been a huge adjustment and my old lifestyle and yeh i do wish i could have it back as i miss it so much.. but i shall never get that back and so i am still adjusting to what my life is now eh...even though i hate it disctated to me due to illness...i am just up and down eh... as we all are..in dealing with our rare disease!! eh..  I am 7 months into my new lifestyle and so much has changed for me. working part time now, has been the hardest for me to adjust too, but oh boy i do need that extra day off each week.  being 39 and not being able to hold a full time position, did piss me off a bit, but i do know that i need the extra rest. the past couple of weeks, well  has been a reminder that yeh i am ill and my body needs to rest. just in having the headaches, getting sent home from work, the dizzyness, fuzzy head bla bla..is all proof eh of being ill... but i will get there, as we all will...

    LOL Sara, thankyou for your lovely comments on my facebook, my son yeh he is 17 now and is a looker and he has stole the heart of his girl friend, whom have been going out since december. she is a lovely lass.

    Now Sarah, i know you have a lot going on with your hubby and chasing insurance etc.... you are taking on too much of others on those shoulders of yours....now you must take care of yourself too... i know it is hard not to care for others, but you must put your self first sometmes ok..thats an order .  take time for your self...'your time' ok... i find it hard to step back from others in need too, but sometimes you just got to take a back seat..

    Pauli i do hope your weekend was lovely with your friends and that you have had fun. How are your ankles doing?

    Emily how is your head my dear?

    Take care all of my blood buds

    love pauline

     

     

     

  • 432. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Hello Sarah: You are always so sweet to think about everyone here! I hope you are taking care of you too? I know it's hard to keep up here sometimes with everyone, But I'm not having any ankle problems????  Other than the terrible fatigue, and the constant sweats, I'm doing pretty good at present. But thanks for worrying about me, as I do you too.

     

    To everyone else: I hope you all have a good day,and are doing well too.   Love to all, Patti

  • 433. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    cms9978 Registered Users
    Currently Being Moderated

    Hey to all, I don't want to be the center of attention but having a rough day.  Need someone that knows what I feel like.  I want to stop taking all my meds.  Being on part time I don't know how long I can keep this up with all bills.  If I am not careful I will have to choose between my pills and food for my kids and sorry to say but the kids would win.  I am afraid that I will have to go back to nights and loose the sleep but keep the apartment.  Why does this disease have cause so much heartache?  And the problem is there is no real cure.  Stupid genes.  Went to the doctors last week and he said that my numbers are too good to do anything.  I wish I felt like my numbers but no I have to get worst before they will do anything.  And in the mean time my kids have to watch this.  I get to be a helpless mom.  So much for giving them the world.  What I am I suppose to learn from this?  Sorry just needed to vent.Colleen

  • 434. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    had a prob with p/c oops

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