I may die I want to die but dont know what to do

The words may sound hollow but you have my sincerest sympathies. You've been dealt a bad hand. Having that operation doesn't sound as though it won't improve your quality of life much or at all.



No, it is definitely NOT. You have the right to refuse. You should have a psychology counselor or social worker help you if you don't want to go that way and insist that your wishes be respected.

I'm with Ragman. I'm really sorry this is happening.

Talk with your doctor. Explain how horribly you are feeling. Get a second opinion if you feel your concerns are not being listened to and addressed. Ask for a referral to a counselor, too, and talk about all of it - don't hold anything back. Your health, your sexuality, your family, all of it.

I cannot guarantee that you will feel better. But at the very least you need to go into this decision with all of the facts, and do your best to make this decision when you are not emotionally compromised.

I wish you well.

thank you for your kind words. It takes so long to get to see anyone and believe it or not many doctors have refused to treat me and have asked me to go somewhere else - my family doctor was the first - the one Ive had since i was a child - as soon as i was diagnosed with marfans syndrome. there were mant others - at first i could not believe it but after a few you get used o it even expect it. but again thanks for your views - it has helped

thank you also for your reply - its a comfort to know that people care.

I am wondering it there are hospice facilities where you live, as there are in the United States and elsewhere. I don't know if that would help you or not, but if you are diagnosed with a terminal health situation, they will either come to your home or have you in care where they can watch out for you. I'm no expert on the details of that, whether or not you have to have some insurance or not, but you might look into it.
https://en.wikipedia.org/wiki/Hospice

You have probably read this already, but if not - here's a link
https://en.wikipedia.org/wiki/Marfan_syndrome

This is one of the best health facilities in the U.S. and is apparently famous for Marfan syndrome treatment, but I presume it is costly to go there and be treated - anyway, they generally famous for having good doctors.
http://www.clevelandclinic.org/lp/marfan-syndrome/index.html

Aw, shucks. Hope you're feeling as well as you can today.

I agree with ossobuco with reaching out to hospice. That was my initial thought when I read this. My dad had terminal cancer and they are excellent. They try for quality of life - including dying with dignity. They are able to administer drugs that other medical persons cannot - this help with pain, they are really strong and highly regulated medicines and only given to the dying.

In any case, they help with terminal patients to provide help all around - with the physical and the mental part of dealing with this tough sort of situation.

I was also thinking like ossobuco to reach to a hospital or facility that is most experienced with this syndrome - maybe you cannot go there for treatment, but I'd suggest reaching out to them as they could provide you even over the phone some guidance or maybe a better doctor that would be much more helpful for you.

Denying medical treatment is not killing yourself - my opinion why go through more pain and discomfort unless it will really help you.

And lastly - and certainly not least - I do wish you well; hope you can find some peace and rest, and some comfort.

lifesux,

I reread and see that I missed saying I wish you good care and less pain and personal peace with good people to talk with around you. I'm so sorry for what you are going through every day. (hugs)

Hello -and thanks to you all for your thoughts and kind words - it is a real comfort to know that even complete strangers care. the internet is a marvelous thing - i would otherwise be alone. I am going to palliative care but my urgent appointment is not for another 3 week - and that is just to be assessed but im sure they will help as my doctor has been warned in writing by the government several time about some of the scripts he gives me without authority (it takes months and even years to be seen by a doctor that can change the medications im on. i was a member of the pain management clinic for 14 years but 2 years ago they dismissed me as they said they could not longer help me. (they had the authority to change the dosage or the meds if necessary but i don't have them anymore so my poor GP must go it alone and he gets into trouble. Anyway thanks again for everything everyone has written - please know that i really appreciate everyone word and they are a great comfort to me. I do not know if I will be able to keep replying to people but please know that i am reading everyone's comments and they are very comforting and helpful - i cannot thank you all enough :-)

Keep talking here when you feel like it, LS.

Have you tried online resources? There seems to be at least one online support group. If yu're near Chicago, there's a Marfan conference in early August. And it struck me that marijuana seems to lessen pain in a broad spectrum of disorders, and also has been reported as anti-nausea. Do you live in a state where medical marijuana is available . And I''m certainkly not advocating this course because we all know it's generally illegal, but we also know that there are illegal growers of marijuana almost everywhere. And there do seem to be reports of its use where ii is available, the Michigan Medical Marijuana Society, or something similar. Google Marfan's Syndrome or "Marijuana Marfan Syndrome and see what comes up. Just talking (or typing) to people who share problems with you can be a comfort.

Best of luck to you. Chronic pain can wear you down. Enduring it for 16 years makes you a hero in my book.

I have nothing helpful to offer, I'm afraid. I just want you to know that there's one more person out there who wishes you the best.

What music do you like? We can always post that if you like (I certainly don't mind; I bet others don't).

I like MJ's suggestion of marijuana for pain and nausea management - but I think you're in the UK?

Could you comment on what your possibilities are for you being involved with hospice care or contact local to you?

Hello -- You are all so kind - im not used to it - it brings tears to my eyes to know you are all thinking kind and lovely things about me and my life as its been - i live in Australia - a small island state called tasmania. evrything is so slow here - i have an urgent apppoitnment with palative care in a bit over 2 weeks awway and i really o dont think i will make it. im getting much worse ove the elast 2 days and i can hardely move and when i do im all wobbaly -being by myself doesnt help a allbut i would rather be by myself anyway most of the time - its really a sad thing thaat i had 2 brothers and 4 sisters and although they are apparently upset i dont see any of them - they have never ooffer any help and if i ask i seem to be that im asking them to break a leg or something . i gave up on them a long time ago. I am now 46 so i have lived a leasst. before i became cripppled with cronic pain i owned 2 restaurmt in queensland - that was a great time in my life - i had 2 years of working and owning my own business - it was geat but then i got sick and then molested by my best friend (i sort of climbed into my shell after that) then i lost everything.. Im not telling you all this to make you sad because i had good time sometimes - it just so you have a better understnding of why im alone :-) - its even funny ive never told anyone the things im telling all of you. i really cannot thank you all enough- i would list all you name but its to hard to remember them - im so sorry - - i love you all --t thnak you everyone. i smoke pot it help but it highly illegal here and very ahrd for me to organise. II don think I have to suffer much longer - :-) its not a sad thing. well maybe a little bit.

Thank you for telling us. Owning restaurants is scary to me but something I can imagine doing (I'm too old now, for sure).

If you have the energy, tell us what kind of music you like - we can go find it.

i forgot a lot of things but i like the nice music from the 70 and stuff - im sorry i now what i like but i dont know who sings stuff or what any song are called - i remember one - songs like and i dont know what it called but it goes - if you could read my mind love what a ... something something something. and i like longer - i thing its called - stuff like thast - ive just taken a crap load of pills - not to kill my self - that isnt happening but just to ease the ppain so ttyping might be a bit odf i also have trouble eeing so if it doesnt outo correct it stays as typed sorry to much trouble to correct - I want to thank Ragman (specially), Jespah (specially, Ossobuco (specially), MontereyJack and FBM, . I read and re read all your comments when im able to because they bring me comfort - i used to have all my music i had gahered throughout my life on my hard drive but lost it about a year ago and ive never tried to download or replace any of it mostley because i dont know what it was - i know thats terribley lazy but it all seemed to hard - but i love music. I dont know what you mean by posting music? I used to build computer for fun but using them well is something all together different. Once I built one inside a borg headd of star terk voyager - that was really cool looking with the green fluid running through the tubes (wwater coolinginstead of fans) it was so cool. but im not so proficient at using them. Im jutst rambling away - ill stop now. I wont be able to pill up again because i will run out to soon -so i doubt i will be making anymore huge posts but i will keep posting for as long as i ccan - if anyone wants to read them. Thanks and everryone should taske comfort in the fact that you have all brought me more comfort and suppport than anyone i know personally and i want to thank you all for that again - it will never be enough.

If you could read my mind love -- that's Gordon Lightfoot.




just click on it

There may be an ad first, ignore it, the song will come on.

thank youu thank you so muich its a beautiful song -i love it :-)