There are things and situations that come to us, out of our control and not our choices in life. But what to do with the unwanted situation ?!
Accept and learn how to live with it and take control of how we feel about it. In 1997, my French Oncologist told me, that I have ET and JAK2 mutation. I was shocked!!
I realized, that there are much more painful diseases in life. So I learned how to deal with my low-pain ET. I still live a normal life. Though I feel always tired, I go on with my daily chores. I still say my daily prayers for others, who have more painful life than I do.
I continue having monologue in my mind, what I dream of doing and dream of places, I still want to visit. I keep on writing and adding more to my bucket list. Never ending ideas, flowing in my mind. Some relevant, some just plain madness.
Last week, 30.03.18, I and Ralph, rode the Brisbane Eye, the tall Ferris Wheel, planted on the South Bank of Brisbane City. That was one sweet memory with my husband. I enjoyed watching his terrified face!!! 😊
I started walking with him and hike on some small hills around our home in Sunshine City, Queensland.
Life is still worth living, even with invisible ET inside my body. Oneday, I'll go back to my true form as energy, as spirit and as a true child of my Creator...
Liz, you sound like one very chilled out lady, who has the true spirt of life in her bones, and enjoys every bit of it, bucket or no bucket list you have got things just right, but then you also have that wonderful sunshine which makes us all feel so good, but here in Blighty it is now April and we have more snow, and heavy rain that is causing some flooding which I am getting really fed up with as I love being outside and doing things like walking, gardening, and feel the sunshine on your face. So you paint a wonder picture so thank you for that.
Hi Lis, thank you for invite, that would be wonderful if only I could my long haul flight days are long gone. I have friends from Sydney staying with me at the moment they come over to us every couple of years which is great, but think they are a tad fed up with our weather, they are due to fly home next Tuesday to your wonderful country. Before they arrived they spent a week In Bali, on a yoga retreat which they said was amazing, but had a real shock when they got here with the snow the temperature change was drastic to say the least, they thought they were coming down with colds which freaked me a bit as I have not been able to shake the one off I have had since last year, but it came to nothing which was good.
I see the commonwealth games started on the Gold Coast today to poring rain so hoping that team GB do well., especially where the rain is concerned, they are used to it. ☔️🏊♂️🤸♀️🏊♀️🏅
What wonderful positive example you are to those of us who are either struggling or starting the journey.
I have exactly the same as you diagnosed 20 days ago. I find it interesting that you talk about pain!!
I have pain more or less constant in my side and lower back, I'm now thinking is this is part of ET JAK2 ??
Your positivity and knowing you have had this 20 years is so encouraging to me.
What a lovely photo, what an achievement.
I wish we had your sunshine in UK, at present its a rather miserable outlook. You are either walking in snow or rain. But we must be optimistic and hope our summer will bring forth the sun🌞
Really nice to read your post, it has brightened my day quite inspirational
Who else will cheer us up, except our own group of people having the same health issues?! Thanks to internet, that we can share our sentiments, our experiences, our pains and laughter. Our miseries are halfway gone, when we know that we're not all alone. Someone out there understands our plight, our struggles and give us strength to continue living.
Well, afterall, we are still enjoying life, aren't we?! Friends are still there and more new friends coming.
You are truly remarkable lady, you say it as it should be. Yes life is still good and when you look around the world at the plight of many including children, we are so so lucky.
Yes when you hear from others in our exclusive club, it certainly lifts your spirits.
You have lifted mine today for sure!
I went for BMB today, after all the injections and trephine needle being inserted to the pelvis, sadly the Consultant could not get a good sample of the bone and marrow.
Hence my Haematologist will need to go in again 😬 Very disappointed and terrified.
I welcome your friendship with open arms, so honest and refreshing in this day and age.
I will look forward to hearing from you.
You are so right about many things. My grandmother always said "the good lord chooses his people that can carry their burden and inspire others".
You are that lady and I am grateful for your positivity and good words.
How nice to have found you.
Enjoy your day with sunshine , send us a little please!
Good to hear from you, I'm in the UK. Our winter is dragging on this year hence we are desperate for some of your sunshine.
However you may be approaching your winter??
But I very much doubt you get snow, we have had a lot of the white stuff this year☃️
I live in the South West of England so not as cold as up in the North. Scotland still has snow. No matter where we live we all adapt to our environment and our situation in life.
I much appreciate your kind offer of a chat by phone, but it would cost us a fortune 🤑
We can keep in touch on here, I'm new to this and not quite sorted out yet regards settings!!
Maz has told me a way to ensure that only forum members can see what we write. I've not cracked that bit yet, but I need to.
I'm careful what I say as my children, all adults do not know what is going on with me as yet. Hence you cannot talk freely. I have a daughter who would definitely go looking in the interest of knowing what is going on with mum! I will tell them at the right time but as a parent I still wouldn't want them to read my private thoughts on ET the situation we are all in.
Good thing this boat is a cruise liner as it has plenty of us on board.
Do you have children, I have 2 of each. Boys are the eldest then girls.
I am a retired nurse just got to retirement age. Like you I have a lovely husband of 43 years. At first he didn't get it, reaching out to this forum.
He does understand now the need to talk to others in the boat😀 We are all different and he is a very private soul.
My years of nursing taught me many things and careing for others is the basic instinct. It never prepared me to be on the receiving end of treatment and it is quite strange. Hence after the initial shock, I had to take control of ET as " it" was in control of me for 3 days.
Today I am feeling improved, yesterday I was way below par with pain from the BMB attempt on Tuesday. However it tells me my pelvis is strong as the poor doctor had such a time trying to get into Bone. I'm off to the hairdresser later and then a nice walk with hubby. Today the sun is shining and Spring is definitely here. My garden is full of flowers and my Camelia is covered in blooms🌺🌷🌺 I love the garden and all flowers. Tulips and daffodils look glorious from my kitchen window.
What are your interests and enjoyment in life?
I read, knit, crochet,cook and bake. Had to cook and bake whilst raising 4 children essential and so much nicer knowing what the ingredients are.
Well I wish you Good night, I will look at your time difference to us.
That was once my fave, meatloaf sandwich 😀 (joke!!!) until I changed to unprocessed meat.
Ohh, I beat ET some days, but of course, there are days that I also feel like the rest of us here. I just have learned to control what goes into my brains and how to deal with ET intelligently. This rare disease is already running in our veins, that's a fact, our bodies are to carry this blood disorder till we all drop dead oneday... So what else to do?!
* Be merry as much as we can
* Smile to anyone crossing our path, that person, may have more painful life than us.
* Be kind to anyone, even criminals have a soft spot (i knew from experience).
I met a person who was once a killer, I saw his remorseful soul. I felt his genuine words. I could only pray for his pardon.
Afterall, life is what we make here on earth. I believe that we are pure souls clothed by our physical bodies. Whatever happens to our bodies, sick as we are with MPN, with ET... We still have a soul to take care of..
Thank you for posting such a beautiful picture, you guys look very happy, stay that way.
I thought I was a tough guy but found a small tear trickling down my cheek after reading your post.
I am a fan of the singer Meatloaf and he once released a album or at least a song (I think album) that was titled "I couldn't have said it better". I don't think anyone, anywhere could have said it better than you have in these posts. Makes me want to go out and do something fun and quit thinking about this MPN, going to do that now, thanks to you.
Hi Li's and thanks for sharing your positive outlook. It is all too easy to let this disease we share send us into despair and feeling sorry for ourselves. I was diagnosed with ET JAK2+ last year and after the initial shock (I was asymptomatic at the time) I came to realise that I was lucky to have found ET before it found me out through a stroke, heart attack or something worse. OK there are some things I am starting to struggle with, but I can usually find a way around it if I remain positive, and as you have demonstrated, this forum is a great place to find inspiration and help when you need it most.
What else to say but, let's row our boat, meaning, let's live our life, enjoy the journey, see the colours and shapes around us. Stop awhile and smile to others, and their smiles will make us alive and a happier person.
After all, LIFE IS BUT A DREAM 🌺
When we finished our human life in this planet, we wake up to an eternal life. It will feel like the inverse of your dream.
In dying, we are re-born and we wake up from our earthly life, like a dream.
Let's all make this life a dream, a beautiful dream, so vivid and full of affection, from the people whom we touched their lives too. Our family, friends, loveones, enemies, passers-by, and everyone we met...
Hello - your note was so encouraging.. thank you for sharing .. I have ET, JAK2 also, and I pray for the people on this site as well as they are a blessing to me with their stories and helpful tips. I certainly have struggled with some ups and downs as someone recently diagnosed.. but feeling more and more encouraged. Blessings to you!
Always good to hear from those who have figured out that in the world of disease, being JAK2+ and having ET is not the end of our lives!
I, too, was recently diagnosed, and now that I've got past the, "you're kidding, right?" phase and have embraced my treatment and my need to take care of myself, I believe I can look forward to many years of good health if I help myself to stay healthy! I no longer take good health and feeling well for granted. I pay very close attention to all aspects of my life, and it's working for me.
On a sad but reflective note, my diagnosis was put in perspective for me as I watched my dear coworker go through breast cancer treatment with her mother who is my age! There was never a day when I came to work and complained about how awful I felt, because I knew her mother was struggling so. Though it's been a year and she is through the worst of it, she is in her follow up year of "mild" chemo and hoping that they will soon call her "cancer free". There are bigger swords to hang over our heads ...
These days I am often reminded of the quote, "I cried because I had no shoes until I met a man who had no feet."
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