Right, I have PV JAK2 + and I was some years ago on a Facebook group PV support. I got thrown off!
Why?
Well the group were so self-indulgent, full of self-pity etc.
Ok I have PV, it’s not the end of the world, I have regular blood tests, my numbers are under control, my point is that PV I may have but it’s not going to control me.
On a positive side as I and the rest of us get regular blood tests, we will be made aware of any early indications that something else is or may be wrong..
So why was I thrown off? They wanted a PV lifestyle, I wanted to get my life back and enjoy it.
Stay positive...
Written by
shiftzz
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We come here so we have a place to talk about our symptoms and not be judged. If you look at lists of one of the the things not to say to people with cancer it will say telling them to "stay positive" is a no-no. And the bloodwork thing is not true. The bloodwork I have done is only a CBC. To catch any other problems they would have to run a chemistry as well. If you want to just live your life and not the PV life then you probably don't really need a support group. If you want to stay positive that is great as long as you don't throw it in everybody's face when they aren't feeling well or need to vent.
You are abrasive. I will say that. My MPN makes me want to sleep 20 hours a day and makes me feel so much pain that it feels like I'm walking on 2 bloody stumps. But I can't say that to you because you would think I'm feeling self pity. I've had this MPN since I was in my 20s and it has effectively ruined my life. Just because you feel ok with your MPN doesn't make it ok for you to judge people who don't feel ok. Don't come in here and call it self pity. You rubbed me the wrong way right at the start. I am a human being who wants to live a normal life and I can't. I don't need someone to come in here and make me feel like less of a person for not being positive. I have good days and bad days. But you took an ok day and turned it into a bad day with your judgemental post.
I think feeling positive or not is a personal thing and definitely not something to urge other people to feel. We would all like a normal carefree life but there are times when anxiety or feeling ill makes this impossible. Personally, I do try to be positive about life and the future but I often fail at this and I feel I really need this kind, helpful and supportive group.
Here .. here .. well said , I wholeheartedly agree with you and feel like you so much of the time ...yes feeling so tired and walking on stumps ...I have learned that People who tell me and others how to feel clearly have no understanding,compassion ...and are people I steer clear of ... love to you ... and to all who have care and concern for one another ..MPNS bring painful misery with them ...so this moronic cliche ...’stay positive’ has become an inappropriate irritant to so many ..
Hi Lainie. Thanks for the support. It means a lot to me. Your post made me smile. So many people don't understand our position and it is frustrating and hurtful. Love to you too. ❤
Can't believe you were thrown off 😢 I'm the partner of hubby with ET/PV and I need the support, he's very laid back, what will be will be, doesn't understand his condition nor his results, treatment options etc... so it's down to me to make sure he's ok. We are ok with that, iy works well, he trusts me to be honest & fight his corner but sometimes its daunting to feel like his life is in my hands, consultants can be a bit hit or miss & we all all know we have to be advecotes of our health.
MPN has robbed us of a few things & my hubby is not the man I married because he is so forgetful, irritable, sleepy and sometimes just missing from our surroundings. But it's also brought us a lot, we paid our mortgage off, we grasp life, don't put things off for another day.
I have bad days, I'm sure he does but doesn't say but we also have some great days, we are much more affectionate and so life is more loving.
My friend who has been fighting bowel cancer for the past 4 years (longer than hubby has been diagnosed) has just been given a terminal diagnosis, after so many operations, chemo, radiotherapy therd is nothing they can offer. She has children who are 4 and 6. She has only just had her mortgage paid so has had to keep working throughout her treatment. Do I therefore consider my family situation a positive, oh god yes. I can't possibly comprehend how she feels, what her husband is going through and while we can say that they both have cancer I know that they can do many things to keep hubby here. I therefore don't feel personally that he & I can moan about our lot as my friend shows just how bad it could be. And part of me feels guilty because she hasn't got the best outcome and we know we should have a long life together.
So yep I'm going to bs positive most days, even if it's just in my friends honour - she is always so bright & full of hope, if faced with a terminal diagnosis she can keep smiling, laughing & living her life then I certainly have to.
Others may not agree but that's my outlook on it, yes MPN are rubbish but I'd not swap it, I'm sure a few out there fighting would like to be our position rather than theirs.
You’re right. I’m sure lots of us on this Forum want to get our pre MPN lives back. We want to get on with living and not have our every waking (and sleeping) moment dominated by this disease.
And for many of us there will be times when life is good and when our ET, PV or MF retreats into the shadows. But there are also times when we feel rubbish, frustrated and anxious. Worried perhaps about blood test results or a change in diagnosis, distracted by symptoms or feeling confused and unsupported by health professionals.
So this Forum is a safe haven. It’s here for us to celebrate the positives. And it’s here for us to ask for clarity and advice. A place to cheer and laugh and a place to cry and rant. Indeed all things reflected in your past posts.
I really hope we can continue to offer a space that is open to all of us and embraces each of us whatever mood and state of mind we find ourselves in.
Yes we do have to stay positive but there are many many pv patients on this site who need sympathy and understanding and not “ a just get on with it and stop moaning “ type of attitude.
I’m like you. Incredibly lucky touch wood, in my lack of debilitating symptoms and I count my blessings every every day and have done for the last ten years.
I have buddied around 35 newly diagnosed patients, many of whom range from incredibly poorly, to incredibly frightened to both and many symptoms in between. All need our greatest understanding.
Perhaps, with the greatest of respect, this isn’t the site for you either.
May I also suggest that you put your hands together and say a heartfelt thank you for the fact that you feel well. I know I do.
This forum is indeed a place where anyone who has a MPN, or is supporting someone with a MPN, can say how they feel at any time and get support and advice.
Some people come on here to say they are feeling really well and coping well with their MPN and the symptoms, if they have any, and that they are getting on with life and their MPN isn't all they think about, and that by telling people this they are, in their way, trying to get across to people who may be worried, that it isn't always so bad.
AND
Some people come on here to say that they are feeling really unwell, are in pain and scared about what the future holds and are unable to enjoy simple daily things like going out or meeting family and friends and find it really difficult some days to function and really can't find anything to be positive about and need to say this, because they need support and advice to help them cope.
What we all have to remember is that we all have different perceptions and see things differently to each other and have different coping mechanisms, and may have family and friends who are supporting us, some of us may not have that support, or feel they don't want to burden their family and friends.
And also we have to bear in mind that living with a MPN may not be the only challenge some of us are facing or coping with, there may be other major life factors affecting us in some way, perhaps with our family and friends and other illnesses.
That is why we all come on to this forum, so that whatever stage we are in with our MPN and our daily life, we can talk about it with everyone. People will reply, because that's what we all do on here, we respond to posts, and we all have different perspectives and opinions, we all see and deal with things differently and we need to respect that and sometimes 'agree to disagree', and choose our words carefully when disagreeing with something that someone has said so that it cannot be misconstrued as abusive or hurtful.
The ethos of this forum is to help, support and advise and just be here when needed, and to have respect for everyone and their feelings.
Well said Maz, I couldn’t agree more. We are all individuals which means our life, our circumstances, our mpn, other conditions, our meds, etc, etc are not the same as other people. We need what we need. I came to this forum in 2012, thoroughly depressed, at the start of MPN journey, trying to hold down a job, look after elderly parents, coping with a nasty mother in law, panicking about my new diagnosis, tests, etc and this forum was here for me and I will never forget the support, the kindness and the empathy I received from complete strangers!
Now, usually I can be more positive but still have my hiccups and need support but I never judge people. I don’t know what they have gone through and what they are going through, so I will support anyone who needs it, whether they need an E hug or they are positive about their disease. It’s a privilege to share someone else’s journey and we should acknowledge that privilege and respect each other.
Very well said Maz. The whole point of the forum is to have a place to discuss how we are feeling and get and give the support and information we need to cope with a MPN. This really does need to stay a judgement-free zone. We each cope the best we can. When someone is struggling, they do not deserve to be judged. It may be true that we sometimes get really down in the dumps and may even get trapped in a self-pity cycle, This is a very self-destructive cycle; however, being castigated about it does not help - it makes it worse. Kindness, caring, support and suggestions on how to get to a better place are far more useful.
I have had a few challenges and unique learning opportunities beyond the progression of my MPN. The have certainly been times where I have been pretty down. Not a good place to be. So how to cope? I think we all find our own ways. Here is what works for me.
1. Support from my family, friends, and faith community.
2. This forum (my friends and MPN Family).
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things tht are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s).
8. Create a high-quality treatment team who you trust.
9. Ad
vocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
I have been blessed to have a relatively indolent form of a MPN. I have lead a long rich life and plan to continue to do so despite what happens with the MPN. Sure - there have been some challenges with the ET-PV and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or just "Suck It Up Buttercup." However - it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.
More than anything else at this point, know that you can manage this. There are ever-more treatment options and very real hope for MPN treatment improving in the foreseeable future. Have confidence that you will be one of many who do manage the MPN successfully.
Good for you! I agree totally! Why let this disease define you? Yes - we’d all rather we didn’t have it - but I too have come across people On asst forums who seem to relish wallowing in their disease and making it the only focus of their lives. One even told me in was in denial about my ET 🤷🏻♀️
Well done! It's taken me two years to get here and I am soooo positive. After trying so hard in the past, to stay so, I did go down a deep dark hole for a while (a long while) which proved very difficult to get out of but here I am! I avoid the negative posts unless I feel I can give some positive input, that nobody else seems to have delivered and enjoy the day to day life stories that we all enjoy.
Keep smiling and moving forward...…..although, I must admit it is only with the change of haematologist that I've got here! That in itself has made the biggest difference I think!
I agree, most of us would like our pre-MPN lives to return. Fortunately or unfortunately we can only go forward.
On average my symptoms impact my daily living. I have many coping strategies to support my physical and mental issues.
In my 4 years experience of PV, I have needed support and given support. I always try to be mindful - my experience is unique to me.
Being supportive, especially online, can be easily misinterpreted. What's supportive to me isn't always felt as supportive to someone else. Also, when I'm struggling, my supportive replies can be interpreted as negative to the reader. I now understand, being a group member, we are all impacting on each other's life's.
I'm thankful for the positive impact this group has on me.
Oh shiftzz one does not keep positive each of us go through periods when we have to fight in order to be positive. At the moment in spite of the birth of my first Grandchild I am suffering from chronic leg pain especially at night and am struggling to keep positive.
This forum is not designed to be happy clappy but rather it is a way for each one of us to share both our good and bad times and to celebrate the good and give support to the bad without judgement.
I hope that you continue to feel well into the future and also that you find something in this wonderful forum for yourself.
Reading all the above posts , really underlines what a incredible forum this is.
Well written posts, with advice and understanding, and sharing of how we deal with our conditions.
Speaking personally, I really can’t imagine how I would have managed over the years without the amazing reassurance and friendship of you wonderful diverse group of special friends.
Dear me.... right, I've recently moved house and the stresses that causes, so not following this thread..
The Facebook page I was thrown off was three individuals, all three were related, mother son and daughter in Law, they would not allow any discussion on the forum, they wanted to rule with their views/opinions only... They were full of self pity and refused to help themselves, still smoking and demanding that they get this and that benefit.
I am 64 years old have felt bad for years, I've worked pretty hard and 9 years ago, my sister died of adenoid cystic carcinoma. My mother has had breast cancer,,, My dad is 92 and had a heart attack the day before his 90th birthday, survived CPR and was in hospital for 6 weeks, dumped at home with no care package on Christmas eve, no medication that had to be sent by taxi, he is now just sitting at home...
Mother never recovered from the loss of her daughter and now has early dementia, she is a nightmare. They have carers 4 times a day, I live 200 miles away, Mother forgets that she should stay at home and has been taken home 4 times by the police.
Yes its tough, but for one am not going to let PV rule my life. I have produced and shared on here my spreadsheet to track your blood results.
I will not feel sorry for myself, I will be positive and get on with my life, yes I feel like shit some days and most days I get about 4 hours sleep, but PV ain't going to beat me.
Three years ago I was taken into hospital, I was jaundiced, my bilirubin levels hit over 850, normal numbers , I was told I had pancreatic cancer, my urine was the same colour as black coffee, I felt rough, my partner who is a nurse feared the worst, after three weeks in hospital they were considering a Whipple procedure (pancreaticoduodenectomy), I was considering a one way ticket to Switzerland. Turns out it was a dodgy gall bladder.
Thought all this, plus over 50 venesections, I have kept this from my aged parents. They have enough on ther plate,
So yes, I am positive and nothing is going to change that.
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