The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 345. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    Hi FishingWoman, welcome to our forum. your husband is lucky to have such a supportive wife.  I am Pauline 39, diagnosed with PV injune 09.  It is scary to start with but in time the fears lessen. my frears are a lot less once i  found this place, it is wonderful to be here, and you will get much advice and many questions answered... so please feel free to ask anything and we will all try and help you and your husband... i wish you both well... and welcome to this fab group of folks..

    Saki, that is wonderful news regarding your platelet counts eh..long may they continue to stay down there eh...Now how is your headache, has it eased any?  my headache has eased, and i think today is ging to be a good day, headache free  yipppppeeeeee!!!!!!  .  take care my friend...

    Pegatha well said.....  enjoy your winter break, take care of yourself and keep warm as you have loads of snow and cold weather ..

    Patti my dear friend, how are you today? you will tired after your long trip the other day...rest up ok thats an order lol..

    Mimi, my friend i do hope your arms are ok today and that the haematomas are not too sore for you...take it easy ok...

    Natalie, good to see your post, miss ya... how are things with your daughter? i hope all is still good for you...take care me friend

    Dee hows the weather with you? do you have snow? i hope it is not too bad for you, as i guess the cold weather will intensify your pain issues..take care my dear x

    Pauli i hope all is well with your family, keep strong ok...take care of yourself ok...

    Robert hows the fatigue today?  i too suffer from fatigue, and have just recently cut back on my hours at work from 37.5 hours to 30 hrs... and oh boy i need it lol..take care

    OK what does MN mean lol...i fae scotland UK (united kindom)  lol...heehee

    I am also worried to the where abouts of sarah and denise...we are missing you both. hope all is well with you both.

    Kay LMAO..heehee i also have a wooden noggin lol... good fun having a wooden head, does not hurt when you bang it lol.  so glad your feeling well and long may it last.x .

    Collen i hope your kids are behaving today lol..try and relax well if you can...

    i have tried to mention as may as i can...for those whom i have not, i am sorry, but i am thinking of you all...

    well love from the wee daft p all the way from scotlandio LMAO.....i shall have a song for the day later....

    see ya x

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

    Welcome to our group, FishingWoman.  We're sorry that you have a reason to join us -- we would all prefer not to have ever heard of an MPD -- but we're glad you found us.  Please tell your husband that we'll be here to support you and him.  As far as the body aches are concerned, we probably all have various aches at various times, but as far as I know, that all-over ache isn't really a part of pv.  But then, we're all different, and have different manifestations of this disorder, so who knows.  There are a couple of people who suffer from fibromyalgia and who DO have that all-over hurting feeling, so perhaps it does have some association.  Possible, I suppose.

     

    Good morning, Pauline.  MN, if it refers to a location, would be Minnesota.  You know, way way up there in the frozen North!!  lol  Speaking of the frozen South, I woke up this morning to a winter wonderland.  Four to six inches of snow on the ground, very rare in this part of the US.  I've been out taking photos since it was light enough to see.  Now, I can hear things hitting the top of my house -- snow falling off the trees that tower over my house.  Hope my roof holds.  Ugh, perish the thought.

     

    Time to have my third cup of tea, and go out to check on things.

     

    Later . . .

     

    Pegetha

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

    Welcome fishing women.Is his joints really hurting because thats typical of PV..Also without knowing his cbc #,s its hard to say whats causing it.How long has he been on hydrea?Not to get into the whole boring story lol  my pain has been severe. in the same locations.Still trying to find answers.Have the docs done  a ANA TITER . Blood test?Thats to see if there is any inflammatory issues going on.Glad you found us.Feel free to ask questions we,ll do the best we can.Nic e meeting you.Coffee is on pull up a chair.tata Dee

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

    Pauline,just want to know.How did you know I had more than one chin????????????You said so in your post"keep your chins up".Made me laugh and I really needed to laugh after my daughters' dx.

    They need to bottle laughter because it helps us to heal our soul.Love to all this cold (white)winter day.LindaK

     

    Linda F,where are you,and how are you doing with the new job.We miss you.I'm sure you are just to busy to post.Take care my fellow Texan.

     

    all have a Blessed Day,you are in my prayers.

     

    Angelina,please take care of yourself.

  • 349. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Emily87 Registered Users
    Currently Being Moderated

    Welcome FishingWoman! I'm sorry we have to meet this way, but glad you found us anyway. This group of people is the most supportive, and loving that I've ever come across. I have been here for a couple years now, and can't imagine what my life would be like without these folks here! In relation to the body aches, I get them too. Usually it's in my back and hips/knees. I always attribute that to my job, and the fact that my hips are defective. I've had 2 corrective surgeries to fix them in the last 3 years. Perhaps there's more of a connection to MPDs than I had thought. I'm an ET patient, not a PV patient, so perhaps the similarities extend to physical symptoms too. . hmmmmmm. . .Another question for the list lol

     

    I'm Emily, 22 years old (23 in 15 days ), diagnosed with ET when I was 18. it's been a lovely roller coaster ride around here for meds, treatments, procedures, blah blah blah lol. Anywho. . .

     

    I hope you can join us and find the support you need.

     

    Peg, enjoy your time off. I hope it's wonderful and relaxing.

     

    Dee, how's the snow in your area?

     

    Mimi, ya'll ready for mardi gras?


    Saki, that's awesome! I'm so glad your platelets are down. . any tips for how to get mine to play nice, too? LOL That's also really cool that your doc talked to Dr. Tefferi, I've seen video of him at conferences before, and he seems to have amazing things to say!

     

    Robert, unfortunately the fatigue comes with the territory. I think it's safe to say that I've been tired now for almost 5 years straight. Uggh. . . putting it in terms like that makes me want to nap right now. . lol

     

    Nat, darling, how's everything in your neck of the woods?

     

    Sarah, I hope you are doing well, come post when you have time

     

    Patti, how's your daughter's recovery going?

     

    Geezo so many posts. . .so much is going on it's hard to keep up. . please know, just because I didn't mention you, doesn't mean I'm not thinking about you! I pray for all of you every day!! I need to run for now, I'll catch up more after while

     

    ((((hugs to all))))

     

    Emily

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

    Okay, ya'll. As I welcome fishing woman - she and I obviously had the same problem last night and that is we got the error message and kept trying to send the same message over and over again.  Well, I'm just glad it finally went through and through and through.  Well, you get the message!

     

    Fishing woman,  sorry about your hubby.  I have CML, but was first thought to be PV and found these great folks here who are so supportive.  I tell all the new folks, I just hung around.  I post on the CML forum also.  This is one of the best support groups you will find.

     

    Linda K.  I am praying for your daughter, her family and her husband.  You, too.  Mothers hurt twice over for their children no matter the age.

     

    Peg - we didn't get the snow here we expected.  Enjoy the rest of your time off.

     

    Pauline, wee lassy,  I have scot/irsh roots and understand you way to weeel.  I was in Dunfirmland last July for the Royal Highland Show.  That was great. I felt right at home and those Aberdeen Angus Burgers were just wonderful!  Followed up with a visit in Edinburg.  Rained the whole time, but it was beautiful at night.

     

    Hope the rest of you are doing well.  I have gotten way off subject here.  I can't remember names and would have to start a journal to keep up with every one.

     

    Kay

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

    Emily i gave the snow to ourgood friend Pegetha  love to share lol

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

    Hi Linda, Are you snowed in too?  Can you believe that we got over 12 inches of snow???  What's up with that...??  And for the record...so much for global warming when you get 12 inches of snow in Texas in a day!!!  I was so terribly upset to read of the troubling issues you are going through....and so many others here.

     

    I am absolutely hating my new job and the drama and stress it has been.  I haven't come on to post because I think I have been down about it and everything bad that seems to be going on with you and others here.  My problems are so very minor compared to them.

     

    On a medical note, the doc wants to do another MRI breast scan...but requested it 4 days after my insurance lasped from my previous job so I have requested that it be put off for a month or two.  Counts were under 500k early Jan and should not require a cbc again till April.

     

    I think about everyone here daily and read even when I don't post.  Linda, my email address is posted on my profile, you should email me, maybe we can chat via telephone sometime.

     

    To all the rest of you,  sending love and good vibes.

     

    Linda

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

    Linda F great to have you back and what do you mean about comparing issues?????Knock it off lol..what ever the prob please update us.We worry one someone does,nt post.Hope the job issue works out .Really wish you could of had the MRI breast scan done before ins. folded.

    The last storm here we only ended up with an inch.RThey predicited all this snow shut down schools aent state workers home etc.The weathermen/women have egg on there face but its better the 12 inches of snow on us.Linda how is you tiown handling the snow issue? Right now its warmer about 35 the inch of snow melted and we,re almost down to brown frozen grass. CYA ALL LATER TATA =D

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

    LOL DEE!!!  ok ok I got it.  But I try to be a drama free zone, and I just hate it when my life isn't drama free....lol.

     

    The snow here is just beautiful and I called it about 30 minutes ago and told them I'm not even going to try to go in.  Our snowman is leaning and I think I'll see if Matt wants to get back out there with me and make another ..... since it might be another 40 years before we can again.....and as far as MN.....THERE IS A REASON I MOVED TO TEXAS!!!   My sister lives in PA and they have something like 3-4 FEET of snow there.....ugh.  I remember it growing up in Missouri, and I prefer the sun.

     

    I see there are some more new people here.  Hi all and welcome.  We are all here for you and do what we can.

     

    Linda

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

    Yeah, as long as I can help it I will NOT bury my bones here, so to speak.....:) MN. Is frigid cold...we have at least 4-5 foot of snow now...some piles r bigger!!! Like 6 foot....uhhgg

    No worries tho... Cali is on our doorstep..we leave Monday, just me and Robby, for 6 days

    PS. Welcome new comers - am natalie or nat

    37 yrs, in Northfield, MN...from cali originally and lived in the south for 12 yrs before moving up 4 yrs ago to MN.......

    I was DXd in June of 09' W ET... Welcome to the group...

    Love Nat

    Sent via BlackBerry from T-Mobile

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

    Thankyou for clearing that one up for me Pegatha lol.... i had no idea what it meant heehee....   how are your roofs? i hope they are with standing the snow...

    wee p

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

    Kay, talked to my daughter this morning and she told me that the Dr. did tell her that she had CLL.She is up beat and is trying to make plans for whats to come.She still is going to have a BMB and CT scan on the 16th

    and won't know the results until the23rd.She hasn't told her kids yet.she will wait untill she gets all the facts in.My granddaughter will be 12 next month and she will be a big help for her Mom and Dad,but little brother is only6 yrs.old.he won't understand what is going on.Me and my husband have been Blessed with our children(one son,two daughters).they are so close and always have been.They all live close and uaually have each other over for family get to gathers.Well,enough of that.

     

    Linda so glad to hear from you.Sorry about the job.You may end up like me.When I lost my job(company shut down 1999) i got this job and told my husband,I'll give it 2 weeks and if I don't like it I'll find something else.

    Well,time has gotten away from me .Been there 10 years now.And everyone is like family.Hope things get better at your job.It is hard getting up to go to a job you don't like

     

    Everyone have a Blessed Day.. LindaK

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

    Linda K. all I know about CLL is what I read.  There is a forum for CLL and I know that it is treatable and like CML there are a lot of trials going on for more and better treatments and possible cures.  Like CML, remissions or complete response to the drugs is possible and it may take a while to reach it.  Please check out the CLL forum and see what's going on.  I have not looked there for information, but also, like CML, don't read anything old about it. Your daughter is young and has a long full life ahead of her.  A man here in town has CLL and has had it for years.  He's doing good.  He recently retired from practicing law due to vision problems not assocciated with his CLL.  He sees a specialist at MD Anderson in Houston, TX.

     

    By the way.  I have a son and two daughters who are all very close - just as yours - do family dinners together and like to all be their at once. It's a zoo with them, spouses and 7 grands when they are all here together.

     

    Kay

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

    well lol...i did not notice that i wrote that LMAO....or i am just a very good psychic of your chin issues eh.....lol....i am so glad to have made you laugh, it is good for you...but keep your spirits up linda k....we all have you and your daughter in our thoughts. ..my love to you and your family linda k..

    pauline

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