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I Have Myelofibrosis

A Myelofibrosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Myelofibrosis. You're not alone. 19 People

    Myelofibrosis Experiences

      Hi everyone, I just joined this support group. I was diagnsed with myelofibrosis 28 years ago and at that time the hematology docs decided to just watch my blood counts to see if there were any major changes. There were not, so they told me I had nothing to worry about...
    dcllmasters dcllmasters 66-70 7 Responses Oct 9, 2010

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    Diagnosed 2/27/2012 - One Month Ago!

    I just found out one month ago that I have Myelofibrosis. I am a 41yr old female living in NH. Thankfully I don't live far (just over 1hr) from Mass General Hospital in Boston where my Specialist is. I am getting prepared to get a second opinion... perhaps at the Mayo Clinic...
    albauman albauman 41-45, F 4 Responses Mar 27, 2012

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    Myelofibrosis Patients

    Hi All,My name is Skye Rodriguez and I work for a company called Elliott Benson research and we are hosting a paid focus group paying $150 to all Myelofibrosis patients that maybe interested in sharing their personal experience with us. This will only be an hour of your time and...
    Skye18 Skye18 22-25 1 Response Apr 13, 2012

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    Katejephson

    I was diagnosed just over a year ago. For the first 10 months, apart from a large spleen, everything was okay. Last October I was admitted to hospital with varices in the oesophagus, one of which was bleeding significantly. That was tied off and I now have regular checks. It has...
    katejephson katejephson 61-65 1 Response Jan 19, 2012

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    Related Experiences

    So, I have no idea where to begin with this. It's kind of an odd topic to think about. I'm gonna just get to the point and discuss from there. Aliens are real. Before you call me...
    Ginnylove Ginnylove 13-15, F 2 hrs ago

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    I don't know if this is really true. It is a bit absolute. Depending on how I feel and what I need, ....friendship is a word that can have many meanings. Like the untrue story that...
    tryingagainII tryingagainII 56-60, M 18 hrs ago

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    I haven't told the truth in a long time about my drug addiction. The last time I was clean was about 8 years ago and I'm not even sure that is true. My drug of choice has been meth...
    Goddess007 Goddess007 46-50 17 hrs ago

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    I have a friend but not the kind i want, she is selfish arrogant and sometimes a b***h. and because of that i really feel like i have no friends. Before, i was prefere to be alone...
    manel2504 manel2504 18-21, F 2 Responses 15 hrs ago

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    What are your symptoms??? I wanted to stay home last night, yesterday was a long day, but I went into the hospital emergency room. I guessed I would be left in the waiting room...
    LadyGypsy LadyGypsy 36-40, F 3 Responses 13 hrs ago

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    I REMEMBER THIS THIS IS WHY I HAVE ADHD (ATTENTION HYPERACTIVITY DISORDER) I REMEMBER WHEN I ATTENDED COMMUNITY COLLEGE WE WERE TOLD TO WRITE AN ESSAY ABOUT THE THINGS AROUND...
    ONESTARRYSTARRYNIGHT ONESTARRYSTARRYNIGHT 26-30, F 1 Response 9 hrs ago

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    2,941 people & counting who feel friendless. Here's my story. I've had childhood friends, we'd go to & from each other's homes, at times sleep over. Some I went to school with. I...
    Isayis23 Isayis23 26-30, M 1 Response 8 hrs ago

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    I have ex family members who stalk me on facebook, and all over the web. 4 years ago trouble started with a cousin of mine 1,000 miles away. He separated me from my sisters.. One I...
    Niko864 Niko864 41-45, M 8 hrs ago

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    I have a very low self-esteem. Like I like my body, but I hate my face. I took the manly features of my dad's face and my mom's hair. I have a big head for my height too. And it's...
    azngirl123 azngirl123 16-17, F 1 Response 31 mins ago

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    You were so close to me when you held the door open I could smell the freshly smoked cigarette on your skin. If I would have been facing you i would have been dangerously close to...
    vivaciousspirit vivaciousspirit 22-25, F 19 hrs ago

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    In the words of Alan Watts: "Advice? I don’t have advice. Stop aspiring and start writing. If you’re writing, you’re a writer. Write like you’re a ******* death row inmate...
    the7thsphere the7thsphere 36-40, M 10 hrs ago

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    I have ADHD and I was prescribed Adderall. I didn't have health insurance so I got the generic kind. I've never had legit Adderall. Anyway, I started taking it last year, but I...
    GreenPixie420 GreenPixie420 26-30, F 4 Responses 9 hrs ago

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    Almost everyday I think of him. Wanting him. Even dreaming of him. He's a YouTuber and I met him personally on an emceeing job a few months back. At first I was starstruck and...
    thehardesttruth thehardesttruth 18-21, F 7 hrs ago

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    I had a tbi when I was 6 & now have left temporal lobe epilepsy. They say not to let it define you but it ruins my life. I'm incredibly intelligent but have horrible memory issues...
    lostsoul027 lostsoul027 26-30, F 1 Response 5 hrs ago

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    Had a conversation with a friend(aka niece's boyfriend). Me: It's been a while, so how are things back home? Friend: Well, nothing much, just having part time jobs for this moment...
    ZADoubleMesser ZADoubleMesser 22-25, F 18 hrs ago

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    In my opinion, I feel that everybody should love each other/be there for one another as a family. For example, I feel that we need to eliminate jailing and imprisonment. People who...
    AICLover AICLover 13-15, F 17 hrs ago

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    I have been taking a low-dose med for some time and have been contemplating going off of it. I forgot for most of this week to take my meds so I thought I'd see where my mood went...
    meadowes meadowes 18-21, F 2 Responses 17 hrs ago

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    We have an excellent Zoo near where I live. They have large open areas for the animals. They are very knowledgeable about how to create a safe and healthy environment for them and...
    tryingagainII tryingagainII 56-60, M 2 Responses 17 hrs ago

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    I never have A drink.....I have A bottle. Yup
    lehcar1977 lehcar1977 36-40 15 hrs ago

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    I've always loved the expression "you can't have your cake and eat it too". Makes sense, you can't physically have it, if you ate it. Maybe that's why so many opt for two cakes...
    extant1 extant1 46-50, M 4 Responses 14 hrs ago

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    I have, the strangest I have met was in college and it is a group of usually very liberal friends. They mean very well and are good people but when I told then about the man on...
    Kathree84 Kathree84 26-30, F 1 Response 13 hrs ago

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    There are a lot of great posts on EP, and a lot of heart-wrenching experiences. Sometimes, when I read them, I am at a loss for words. On these occasions I hit the "heart" button...
    unluckE unluckE 31-35, M 3 Responses 13 hrs ago

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    Today I have to put my 7 year old dog to sleep. He has a bad form of Diabetes, he's lost 6lbs (hes a small dog so it isn't good) and we do not have the money to buy him insulin...
    sabrinasilveira sabrinasilveira 16-17, F 2 Responses 13 hrs ago

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    Should I go at this party tonight?? It's in a club... I have bought the invitation already but I have nothing to wear and in super bored to go....
    littlemojosm littlemojosm 18-21 1 Response 12 hrs ago

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    It’s not just the “little,” it’s the “have yourself.” Does anyone else find the title of the Yuletide classic “Have Yourself A Merry Little Christmas” oddly...
    ColdMountain ColdMountain 61-65, M 2 Responses 10 hrs ago

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    It's a real challenge every day to have a "normal" life. I have to walk a knifes edge so I don't get her upset or more depressed. She can't get anything done so I need to do the...
    Slasher57 Slasher57 56-60, M 1 Response 9 hrs ago

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    GOATS.Why goats.Why are there goats on this planet?Would it be fun if I give the goat a ride?Wait what?I don't have a car.Not old enough to have a car.What does a goat taste like...
    Sanding Sanding 13-15, M 3 Responses 9 hrs ago

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    I didn't married. If I never got a daughter. If I never went to the army. It is not that I regret anything of it. But I am curious if I could see what would have happened to me if...
    Nickgermany Nickgermany 46-50, M 1 Response 8 hrs ago

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    Cows have accents. They all have different moos depending on what country they live on... And spoons are just little bowls on sticks...
    starkizzed21 starkizzed21 22-25, F 1 Response 6 hrs ago

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    My sister in law just told me that my anxiety is aggravating to her. You think it's not aggravating to me? I have to live with it, day in and day out. Put yourself in my shoes for...
    reneeo11314 reneeo11314 18-21, F 7 Responses 5 hrs ago

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    it sounds like a tv drama, but this is my life. I have two sisters who are trying their hardest to get me in trouble with the law, and other things. They want me locked up, put in...
    Niko864 Niko864 41-45, M 3 hrs ago

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    "Life's battles don't always go To the stronger or faster man But sooner or later The man who wins Is the man who thinks he can!" During my childhood, many of my teachers would...
    Presently01 Presently01 18-21 2 hrs ago

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    dear everyone, If I do not respond to your messages sent directly to my inbox, I'm not "ignoring" you. I'm simply not looking at the messages. I get about 50+ messages a day, and...
    MeowOnMe MeowOnMe 18-21, F 1 Response 1 hr ago

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    I may write more about this later. I have written about it in other posts. I like this story topic because it does force one to look at one's life from a different perspective.
    tryingagainII tryingagainII 56-60, M 18 hrs ago

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    Last night I went to dinner with some very good friends who I hadn't seen in a while. Just sitting there waiting to order, my body temperature shot through the roof as I started...
    pnw21 pnw21 22-25, M 2 Responses 18 hrs ago

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    its broken in pieces like that Chinese vase your grandmother keeps even though it was dropped by the nieces. picked up all the parts, one by one, held it in my hand and looked down...
    xxbrokenlinkxx xxbrokenlinkxx 22-25, M 17 hrs ago

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    I woke up with a headache this morning :( It's similar to a migraine aswell. Anyway for the first time I went on the Xbox 360 for the first time in ages in months if you read my...
    JonnyBurrows10 JonnyBurrows10 18-21, M 17 hrs ago

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    my neighbor is just all around bizarre. It's like an art form to the most disturbing degree. He loves any negative attention you're willing to give so he can turn it around in some...
    davenr7 davenr7 31-35 17 hrs ago

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    Where have all the good men gone, and where are the gods?  A hero...Not this:Or that:I mean... grow up, men!
    MissGaga MissGaga 22-25, F 20 Responses 16 hrs ago

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    I have tablets , diazepham mg took 5 so used to then feel better.
    wherethewildthingswere wherethewildthingswere 26-30, F 15 hrs ago

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    Aren't I always in a dilemma? Go do my homework and avoid getting scolded or have fun and play? (Play as in be antisocial and go on the Internet lol) well, I don't think I'll ever...
    Firepaws Firepaws 13-15, F 2 Responses 15 hrs ago

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    My husband once called me ****. Not ******, just ,"You are ****" & "So awful I gotta have **** just to get off when I'm with you"....he's fabulous
    lehcar1977 lehcar1977 36-40 15 hrs ago