Coming up to 5a.m in the morning,swigging coffee by the buckett load & smiling to myself after glancing at 1 of my many fridge magnets that adorn my fridge, this 1 about self-righteous people! I was told recently that as i'd been diagnosed with etjak2 fos nearly 10yrs i shoud know more about mpn's than the said person because they had only in the last couple of years been diagnosed themselves.i'm sorry i didn't get a medical degree when i was informed about the et at the time but i considered i had got more pressing needs at the time like taking care of a young daughter at the time & making sure she got a decent education not being burdened with worry about me.I felt very patronised by it & looking over some of your older post & replies to others on this site worrying regarding your views on hu & et in general.you state et is not a blood cancer as such & appear to suggest it should not be in the same classifacation as the other mpn's, forgive me but i think WHO disagrees with you on that 1,also you try to talk about that "poison" which is hydrea & appear to ask people if they agree with what you personally think of it.well i'm here to tell you et is a very serious condition that effects us just as much as someone with pv,mf, pmf, & the early onset & secondary versions of any of al the mpn's. Has regards to hu that is your opinion & should not be foisted upon other people.your links are great but sometimes people on here just need a bit of empathy on here & a few kind words something i strive to do,for the record l'm pretty new here,only found out about this site a few months ago,even though i've been diagnosed so long. Hu as made some off our lives bearable by reducing some of the harsher symptoms even though me, like a lot of people on here don't like taking it.& believe me i am not anxious,far from it,i'm a strong minded "black country" woman down here in the west midlands.uk. & they don't make them any stronger than down here.by the way i know what tia's are i had 1 before i was diagnosed than in 2015 i had a significant stroke,so no need to tell me tia's are minor brain strokes?. Well now i've got that off my chest,i can go & put the kettke on & do me another well earned coffee & probably as its now saturday,a nice bacon butty🥓yum yum. Hoping all mpn'ers ave a nice weekend whichever mpn they have. Atb,tina.x🤗
"I LOVE self-righteous people!!"oh what a laugh. - MPN Voice
"I LOVE self-righteous people!!"oh what a laugh.
Hi Tina, not sure if you wanted any response to your rather cryptic post but he you feel better for it and the bacon sarney of course.
I recall reading one of the responses you mention but didn't see it the same as you, sometimes things are written a little ambiguously which leaves them open to misinterpretation methinks. Sometimes opinions are contentious like the drugs we are on or simply incorrect but someone usually points it out in the responses.
This freedom to post opinion is one of the things that makes our Forum what it is along with that empathy and kind words you rightly mentioned. And at the risk of myself sounding patronising 😆 I know you've actively contributed since joining and long may you do so.
I know youre a strong minded Black Country woman ( i used to date one many moons ago !) but do you not think you're being a tad harsh publicly rebuking someone, though unnamed, who is straight talking but likely means well overall. Just a thought.
I'm having a good weekend by the way and hope you are too x
PS , I was on HU for about 9 years and it worked well for me in that time , though an elderly friend had leg ulcers from it so different strokes for different folks eh. . .
Hi jr, you are indeed right in your response & also in how people respond to certain events & also in what could be construde to be patronising to one person & also very hurtful. I do & have taken on board everything you have had to say. I have been watching out for your post & responses since i joined,you have a lovely sense of humour & are a very aspiring person with your bravery,i especially enjoyed the quip about the pin number.certainly raised a smile😊 i do indeed wish you well chris & long may your spirit shine through.sending your & your family hugs.x🤗 Atb tina.x. p.s.where in the black country was your date from chris?
From Dudley but lived in Bham. A reservoir has flowed under the bridge since then x
HI Tico. This reply is not totally what you are saying
And I know there are many kind people on the forum. We are all different and react to our co sit ions differently. I must say that I am sick and tired of those who are not having such difficulties to be stoic and get on with it.I believe several of my posts have been erased because of my"negative" attitude. I pray every day that sometime a solution will be found for all of us but right now I have reached bottom. I also have CFS and it has taken 4 years to even get a referral. So yes, to all of you who happily are coping with your condition don't assume that we are all able to". I. An hardly walk and have no support other than my daughter. Upon telling my clinical psychologist that I wish I could I'd because of my quality of life suddenly there were people around although they are on holiday. So to all of you out there who are coping,good for you and I a very happy about that.Just please don' ignore those of us who are at the end of our tether.
AS my o casional chycologist say "there is no magic bullet". We know that but I am
M sick of hearing people say " life can be food etc". Well, mine isn't. Just please remember that. Like so many of us our quality of life has been robbed from us and it wasn't until. I told my psychologist that I would like my ,ife to end that someone actually listened. Hopefully I am Seeing ? Next week. I don't want to die but cannot living like this. This post will probably be erased but I needed to tell you that it is more about the condition. We are human beings and are suffering. Thank you Tico for raising the problem. All my good wishes to you. Mary
I
Hi Mary, I’m so sorry you feel as you do. I’ve always gained support from this forum which I’m still grateful for as I needed it so much in the beginning in particular. I want now to repay that by helping others when I can. I know what the anxiety of a new diagnosis and tests can do and if I can make that a bit better for someone, then that’s great.
I have bad days too like everyone else and was retired early due to ill health, partially down to PV. I’m going through a bad patch with my arthritis just now but know if I’m feeling down, I can post on this forum.
Kindest regards Aime xx😺
My dear dear mary,i was only expressing how i felt &, made me feel.i have replied to you before & most certainly know how you feel,i have seen & read your posts & replies you recieved,i also undestand how lonely you feel but can't believe the moderator of this forum as deliberately deleted some of your post because they were of a negative nature,perhaps like me you have pressed cancel & not reply like i've done several times.you mention in your reply to me you.that you are sick & tired of stolic people who have no difficulties,mary believe me i have like a lot of people havemany difficulties & like a lot of people we all have our different ways of having to cope with what life throws our way.some have to cope with their lot their is no other choice in life,i know in some how lonely you feel & have even expressed in 1of your posts how being around negative people have made yourself feel.i suppose that is the way of life but having to make the best of it is the only thing we can do but we should consider ourselves lucky we are here to express them feelings we have. I myself consider myself lucky & certainly remember the feelings &fear i had when diagnosed,that never goes away unfortunatley. I had a tia before diagnosis & that is how i was diagnosed. At the time i'd been married for around 12ys to a idle & useless husband. All the various appointments i faced alone,i was 38yrs old & our daughter was 10-11,i was preety ill at the time & had lost 3 stone in weight & also having to cope with the most awful symptoms,i'm not religious but even i was brought to my knees & said god kill me or cure me,as it happened i got neither but along the way i suppose an inner strengh. My then husband was idle & continually moaned about is none existent bad back & legs as an excuse to no longer work,i was the worker in the house &did the decorating in the home aswell as my other chores around the house& yes i did feel robbed at that age & had to find a way of coping with it. Then in 2015 all in the space of 10 months my broke down,i watched my beloved mum die & 4 days after she died i ended up fighting for my own life in intensive care fighting for my own life after neglecting myself & ignoring my symptoms of another condition i have,then to top it all off had a significant stroke in the october. I consider myself lucky that i can write this as i could not even text for a long time,it all came out gobblygook & it took some time to get the use of my arm back with a lot of physio & work on my part. When i came home their was only me & my cats as my daughter was then living with her now husband. I did feel frightend & cried many tears of frustration & of helplessness but somehow came through it. I have a 2yr old grandson charlie who i live for. In 25 days time my daughter will have a planned c-section earlier than planned because of concerns over her size & because of a rare condition my grandaughter has,when she's born madison wil have to be rushed straight to the neo-natal unit.we have known this since my daughter was 11 weeks pregnant. I have had to be strong for my daughter & be strong for her because our children are always our babies & need us to be strong & sometimes we neglect ourselves. I live on £146.20 every 2weeks & know i will never be able to do the type of job i'm experienced at which was case & crate making because of lingering problems from the stroke in my fingertips & other conditions i have. I don't know how i'm going to pay my next gas bill,now my small amount of savings have gone & i can't work at the moment & heat is important to me having raynauds & even having problems with the cold in this weather sometimes effect me but know i have to carry on regardless. If i had a choice of between my et mutating into the unthinkable & the well being of my daughter & granddaughter i would choose the former but i can't & somehow have to carry on with the stress of knowing sometimes thats the way of life but please understand mary i too have feelings & feel the need to air them. And believe i've got an equal ammount of compassion towards others & certainly of my ups & downs like everyone & do enjoy this forum as i only came across recently myself even though i've been diagnosed for nearly 11yrs. I do feel for you situation & in your previous post you have a daughter & i think a son-in-law.perhaps you could spend more time in their company or speak to your gp about your feelings or perhaps a neighbour?but for all said & done i still consider myself fortunate to be here & be able to send you my warmest wishes & certainly hope you happiness in the near future. Atb.tina.x
Hi Tina,
I’m pleased to know that you are enjoying the forum, and I do hope you continue to contribute.
I think it’s especially cathartic for us MPNers as a minority to access this wonderful forum to express any worries, ask questions or indeed, educate ourselves through the experience of others. I know it helps me to connect with likewise people.
Reading through your post I realise that you’ve had some really difficult times - but your positivity is clearly evident. Life can be such a struggle with limited income and it will certainly make any illness that much more profound. I do hope you’re getting all the benefits that you’re entitled to.
I hope everything goes well with your daughters upcoming C Section. It’s good that she’s got a strong Mum for all the support that she’s going to need.
Keep posting
Mary x
Mary
I am really sorry to read how much you are suffering and I imagine you only express a tiny fraction of it here. I have no words that can bring you relief I just wanted to say that I hope that the appointment for CFS will give treatment options that may help. You are in my thoughts
Susan
Mary, I am the only person who is able to delete or amend posts on this site and I can tell you wholeheartedly that I have never deleted any of your posts. If I do have to delete posts it is because the information in the post is incorrect and possibly dangerous, or could be deemed as slander/libel, not because they are negative, I am very aware that we all have different opinions and have the right to express them freely. If I do delete posts I will always write a private message to the person concerned and tell them why I have done it. I will amend posts if information is incorrect and this is visible with an explanation. I know that you have told me in the past that you have had problems when replying, or posting, thinking you have done so but nothing appeared. Maz
Thanks for your replyTico. Mary
Hi Tina,
I laughed reading this but also felt really sad. I have no clue what post triggered this for you but I am glad you raised the important point in your first message and in your replies that people have complicated lives and deal with a lot and that whatever chronic illness they have, it is one problem among others. We do the best we can but there are times when we are floored by the little things as much as the big things. I am no different. The fact is, any person with a chronic disease (until it becomes life threatening) spends a tiny percentage of their time in the healthcare system, the rest of the time you manage it yourself and if you are lucky you have supportive family and friends, enough money to get by and cover the bills, a roof over your head, not much hassle with the kids or grandkids, no major violence or crime in the area you live in, etc etc..... so a change in chronic pain, another chronic condition, medication side effects, fatigue, a difficult appointment, a hot summer, a partner suddenly becomes ill, a through the roof utility bill, cross words with a friend, a post that annoys you- can be enough to send us over the edge at times. The big and the small comes to represent the struggle to manage our complicated lives.
No one ever knows how another person lives, and so sometimes when we speak of how much of a struggle it is for us to cope with illness, contained in this is all the complexity of living, as illness is never separate from our the rest of our lives, it is born, shaped and reshaped in our lives. My life at the moment at all levels-a real struggle. For some, both as personalities and culturally being stoic gets them through and that is great. For me ET is one more problem to manage, sometimes I cope, sometimes I don't. And that is okay with me.
All the very best to you Tina, mind yourself, and I really hope everything goes well for your daughter and that she has a safe delivery and she and the baby thrive.
Susan
Hi susan, sorry it too long to get back to you,i have just read your post. You are indeed right in what you say in all of your post but is true also of the point i made in my reply, for all the difficulties, i am lucky i'm here for a host of reasons,i'm to support my daughter along with her husband but as a mum, i have had to be strong for her. I have never really discussed my condition outside of family & finding healthunlocked was incredible where people in the same boat,(mpn's) were. I am not one for social media & i am very aware of the pitfulls of it,ie,opening yourself open to abuse & whatever else, that is why i was vary before joining the site,but i must say it was wonder to meet others with the same worries & fears & sharing them,for which i am very grateful for, thank you for your kind words regarding my daughter & granddaughter & i wish you my kindest thoughts also.Atb tina.
No worries Tina and thanks are due to you for raising such important issues. This is a wonderful forum with really kind and supportive people and someone will alwaysbe there with a kind word or encouragement when you are down, or to celebrate with you. No abusive crap here, just respect. You do strike me as a very strong woman and I am sure your daughter appreciates your support. I am so delighted that you found this site so that you can have support for you Tina.
Sorry I am late posting but had to work tonight.
All the very best to you and all who belong to you
Susan
Susan, what a lovely, articulate and thought provoking reply. 🤗
I reply to Tico and others. I sat in my chair and literally had tears running down my eyes as I read these stories. I have my own story (struggle) which in some ways is better and in others worse than others. I have read the blogs and have also watched about soldiers going to battle. Both profoundly impact the way I deal with the things I go through. Of the soldiers stories a few stand out. One story was of a woman soldier that lost her leg in a helicopter accident who wanted to die. Her father, who was also a marine, told her something to the effect that her enemy wanted to kill her but he didn't have to because she was going to it for them. This woman went to climb several summit (with only one leg) out of 12. She wanted to do all 12. Second story was of a Navy Seal who took 3/4 bullets while facing his enemy. He said that he knw if he could stay conscious long enough to get help his chances of survival was about 90%. Before getting that help he had to stay conscious during an air raid on his enemy that was 45 feet in front of him. He survived it to tell his story which amazed me. He stated that as a soldier, that any solider owes it to the people that lived and died for their fellow soldiers, to come back not to take their life but to live it to the fullest and to the best of their ability. The two other stories where one Navy Seal lost both legs only to go to the Olympics to win medals. The other was not a Navy Seal but Captain and his job to was to be ahead of the Navy Seal to look for IED's. He lost his vision after an IED exploded in route of him trying to help a former fallen Navy Seal. He went on to become an Olympic swimmer blind. What I get out of your stories and the stories from this blog is priceless. One is that I do have a story to tell this is my testimony...that my story counts. Weather negative or positive I have a story. I have to fight this MPN; not just with voice but specifically with my care. (before I was self defeating with it) That I am not alone in this as I read all the stories and about the time I get discouraged someone else's story gives me that leg up that I may need for that day or for that moment to help me. I may not be a uniformed solider but I am soldier in my own right for what I have and the battle that comes with life and through whatever you want to call this disease or any disease. (Please understand I am in no way trying to disrespect anyone in uniform or anybodies story on this blog) Lastly I have intense respect for these soldiers and for the stories no matter who or what they are. What I have really learned for myself that I have to be more of a soldier, like that of a Navy Seal, in as the old saying goes is simply to put my big girl pants on which is not something I am always good at doing. These stories tell a lot of a person and my hope is that when I read or hear of someone else's story that it can inspire myself that much more in my own story to help me rise above who and what I am going through. Thanks everyone for your story!
Dear Tina, I am so sorry that someone has made you feel like this. We must all remember that we deal with life differently, and have different opinions and different views on everything, not just our MPNs, and it's ok to express those opinions on this forum, but not to express them in a way that makes anyone feel belittled. I do hope you continue to post and reply to posts and that it is helping you to do so. I also hope all goes well for your daughter, and that all will be well for you all. Best wishes, Maz
Getting tested for autoimmune diseases 
I am terrified. Does it get easier?
AE's on interferon
Shortness of breathing n chest pain came out to be bcz of inflamed liver because of blood thinner.
ET: Changing from HU to Jakafi or an Interferon treatment
