Wow, lots of new "faces." That's good. Welcome, everyone. Sorry you had to join us for this reason, but it's always good to have other people to chat with who understand what you have and what's happening to your body.
I'm (hopefully) recovering from a long-lasting uti which has proved resistant to two different antibiotics so far. I'm on my third round, and am hoping that this will do the trick. I've been feeling lousy, and had fever yesterday, but I'm better today. Good thing, since I have an appointment with my hem/onc tomorrow, and I don't want to be "sick" when I see him. (Hmmm, what's wrong with that statement?)
It's hard to believe that my summer vacation is almost over. (We go back to school the first week of August.) It seems like it just started. My "to do" list is still almost as long as it was when I first made it at the beginning of vacation. Oh, well, there's always next summer.
Later . . .
Welcome Cellia (Sorry about the misspelling), My name is Colleen, I am 31yo, mother of 4. I was dx 2008 with Myelofibrosis. Welcome to the table of blood buddies.
Congrats Emily on your promotion.
I just wanted to share a bit of good news with you all. I am a great aunt, my niece had a baby girl yesterday. I will put a pic of her on my pic thread. I will check with you all later.Colleen
How wonderful for you to be participating in the LTN fund raiser this year. I found it to be a great experience and came away from it with new friends and lots of new memories. I will volunteer on site again this year...And I love the name you came up with for your team--"RPC"--great team name...............Yes, I did send you a private message--you should be able to click on a box that allows you to read it. Other than that i can't help you--I'm not real computer savvy! I'm still learning as I go! It was in regard to the Traveling Tee and the LTN fundraiser. .......Hope you are faring well..............I, too, have been on computer too long--but I need to go to bad--no running for me!!! Take care..........
Dee how are you my dear? i do hope you are ok. thinking about you
Patti how was the rest of your day and i do hope your feeling a bit brighter...always here for you and thanks for being there for me
Mimi good to see your posts. i am ever so pleased that your wrist is back to normal, yehhh thank you for being there mimi, need all the support i can get
Pegatha a UTI gosh that can knock you off a little bit eh. I do hope the 3rd lot of antibiotics do the trick for you and you begin to feel better soon. take of yourself now ok and drink plenty of water helps flush out the infection or cranbury juice
Linda K gosh how strange is that to have blood disorders so close in the family!! so rare eh! I do hope your daughter is doing well too. You can all support one another, take care of yourself
Linda K i do hope i find happyness soon but not sure if it is going to happen right now!! thanks fingers crossed though
Shawna your diet and activity regime sounds interesting and demands devotion and determination, i sure hope you get the answers your looking for. I posted on your diet blog telling you of another forum with a gentleman who is very interested in diet and exercise in relation to pv. His writtings are good and some require a little knowledge of science... I did have trouble getting onto the site when i posted to you, so not sure if you had a look
Emily golly gosh you have a very busy schedule with your 2 jobs and well done on getting the promotion...remember and take it easy and time out for 'you' ok
Sarah how are you getting on? hows the mouth ulcers, i do hope they are gone
Pauli proud of you for adjusting so well to the hydrea. i too am adjusting to it too and i am doing well. take care now ok
EVERYONE ELSE i hope you are all getting on fine and are all set for summer holidays (vacation)...
wee p from scotland
Thank you for that link on nutrition. Although for some reason I can not get there. Yeah, this nutrition/activity log is a bit time consuming, but I figured if I have the summer off why not do an experiment.
How is everything going for you at home?
Congrats on your promotion! That is wonderful for you! Take care of yourself, and keep in touch.
It is so strange that so many of your family have blood disorders. I guess you are all just so special! I was thinking of your daughter and how hard it must be for you. I am praying for your family and your daughter's wellness. How old is she? I am sure you probably said this, but what kind of disorder does she have again?
Hope everyone is doing well! Have a wonderful day!
Shawna the link did not work for me either, but i will try again for you as i am a member of the pv group there. things for me at home, well they have taken a BIG turn for the worse, but at this point in time i feel i cant post as to what is happening as it has all gotten very complicated and very distressing. But when i am ready to post my up to date situation i shall, but for now i am sorry but i cant. I have only emailed close friends on my situation and please dont take that the wrong way, as it is not an insult to you or anyone else on here (i love each and every one of you folk here)....i just cant post whats going on right now... All i can say is that things have developed!! . But thank you for asking. I am holding up ok, was at my doctors this morning and requested my anti depressent be increased, as i am not sleeping too well just now.
I am keen to hear from you about the developments of your diet in relation to the pv. Shawna i am right in saying that you are only 29! please correct me if i am wrong. I thought i was young at 38 to be diagnosed with pv, untill i found my way here i thought i was the only one, but i am not. And Emily was diagnosed at an even younger age. If you want to email me i shall show my email address for a few days, if you want to chat more on the nutrition side and pv in general, as we are near the same age and will have similar fears... i would like that...
p.s. just came back to add i have found the link and it is working now, email me and i will email you back with the details ok..only if you want too
MORNING ALL !!! Sorry i have nt been around..no excuse.Remember a man named Charles about a year ago being on the forum ?Well he just emailed me wanting the link.Does anyone know how to send it?If so i,ll give you the email address.Sarah where are you did you and Mimi run off on vacation ?Same ol same ol here this is the second week with double hydrea and i would like to ask to be cut back and have a phlebot now and agn.Will be getting a copy of my cbc but i know the platlets are border line crash.The other situation with legs and upper back are acting up but i can deal with it.Just wondering if its something totally seperate or it has something to do with the bone marow.I have read somethings about compression with PV.Although rare it can happen.Just a thought.
Pauline you make me proud but yet i still hurt for you and your in my thoughts everyday.
Pauli how are you and is Ralph doing well i hope .Denise are you coming back ?????Patti i pray you can get some long awaited answers and i,m so proud you told the doc how you felt about the way they where treating you.Go girl.
Pegetha hope you also get your answers soon.I guess wwe are all waiting for info to help us move on..To everyone else sorry i cannot mention everyones name..lucky i know my own.If it was,nt for the mail coming daily i probably would of forgotten it....thought for the longest time my name was "postage due ":)tata hugs and love all of you !!!
Dee my dear thanks for your lovely words, they really touch my heart. you too are an amazing person and keep battling on through your continuous medical mystery battle, a true soldier..keep going i will be ok keep you posted i have emailed you the link you need to pass on to Charles.
Everyone, take care
Hi, gang. The deputy sheriff, Peg, got me. I try to keep up but don't post much any more. I am alive and doing okay. Just very busy at work and traeling some. I'll catch up with the new folks later. Welcome to all and like you, we at CML site are all praying for a cure. Can't wait to see the completed T-Shirt Do we know where it is right now?
Dee i sent Charles the link to the site here (hopefully i had the correct email? i sent you a copy too, let me know if it's the wrong email). but here's the link:
it looked different to me this time, but i tried it and it worked. So we'll see...
Dee, i'm so sorry to hear that things are still not improving for you i'm so worried about you. Is the fatigue really bad for you now on the double hydrea? and then with the heat going on right now, it makes matters harder i bet. Yes, a phleb. over so much hydrea would be good. I'm praying for you. What's your next appt. and with who?
Pegetha, sorry to hear you've had such problems too. My goodness,... round 3 with the meds. I will be praying this one will take it all away!! Hang in there my dear, and good job on getting on Kay to post! Great to hear from you Kay!
Mimi..... rumor has it we might have been on a vacation? hmmm.... wouldn't that be nice! lol... So hot here! i pick somewhere cool!!! Oregon? how's the weather there Patti?
Praying for you Patti, hope things start to get better for you, please hang in there. Brighter days ahead....
Pauline, i'm keeping you in my prayers as well. I too am proud of you!
Got to run.............. catch up this weekend. take care all, Sarah