Assisted suicide

[irish]

My opinion at this time is that we should all be advocating for better treatment of autoimmune diseases plus better research for pain control. I do not believe in suicide for the simple reason that it can appear to be a very selfish act and destroy a lot of lives. Therefore we need to make sure that er get better diagnosis, treatment, etc. When these darn elections are over we need to pester our congressmen and tell them to get off their duff and get to working for the people who are paying their jobs. (This applies to all parties)

Having worked as a nurse with hospice patients I know that with proper pain control patients are able to interact with their family and have meaningful interactions and acceptance and love. Hospice patients are known to graduate from hospice back into the land of those able to have a fairly comfortable life. This is also true of those of us with autoimmune who sometimes suffer with pain and symptoms that seem to wane and ebb. Where their is life there is hope. I can tell you that seeking pain control can be difficult at times and takes a vigilant family using medical and non medical personal.

This is a tough subject and I know not everyone will agree with me. This is my opinion and it stops at the end of this post. Irish

[Deb 27]

I remember studying this subject when I was in college. If you look at some of the people Dr. Kevorkian helped, many of the diagnoses were not terminal. I found it so disturbing!!! One was fibromyalgia. I think the "health care" system failed these people in a major way.

Depression can come with pain and with a non fatal condition, there is always hope. If one doctor can't help you, keep looking for one who can and get treated for depression and pain. We go through some tough days but suicide is not an option!!!

[happylife]

6. 25% of neuro sjogren patients develop trigeminal neuralgia. This pain is the worst pain known to the medical world. It is more painful than limb amputation pain of an accident. 25% of these patients commit suicide. MVD surgery gives hope, but that does not apply to trigeminal neuralgia caused in neuro sjogren.

hi happylife: I read that just in United States there  are 4 millions people with sjogren. Just in the United States.  Plus some millions  around the world
so 25%,  if your data are exact, more or less  one million people have trigeminal neuralgia in USA and more or less 250.000 commits suicide???
this seems very strange to me, odd that media do not speak about this!!!

Hi blue

It is 25% of neuro sjogren get trigeminal neuralgia. (Neuro sjogren is 25% of total sjogren).

Also as per dr.robert fox prevalence of sjogren is 0.1% to 0.3% that should make the sjogren count as 400,000 to 1,200,000. Lets say 600,000. 25% of this is neuro sjogren 150,000. 25% of these develop trigeminal neuralgia which is 40,000. 25% of these commit suicide which is 10,000.

[markt]

When these darn elections are over we need to pester our congressmen and tell them to get off their duff and get to working for the people who are paying their jobs. (This applies to all parties)

I'll second that.  It's not a problem to them if they don't hear about it.

I'd like to see the SSF calling representatives to see about having more legal teeth added to the FDA Expanded Access program on behalf of a patient community with limited treatment options.  What was passed in Congress last spring is a great start... and it has worked for me in one scenario.  It would be what it needs to be if Providers had more of an obligation to submit claims to the FDA on behalf of their patients that asks when the request is within scope of the law.  (Versus at the whims or inclination of any Provider).  Patients with limited treatment options need to be heard, or at least humored.  There is hope and healing in that as well.

[Carolina]

Dear happylife and all my Sjogren's Angels:

I have what you would describe as "neuro Sjogren's".

My Immune neurological problems aren't caused by autoimmune Sjogren's, but by another mechanism deployed by my Immune Disorder, but the outcome and progression are the same.  I started with Sicca, in 2002, and now I have major neurological damage to several organs/system and the damage  is progressing

And yes, I am severely disabled by the neurological damage my Immune Disorder has caused.

However, my worst pain is caused by my osteoarthritis.  There is no clear scientific connection between osteoarthritis and my Immune Disorder. 

And I am not a good candidate for joint replacement, which would ease the pain of my osteoarthritis. Even if the surgery were  successful, I would struggle with recovery because of my neurological problems. 

It would be hard for me to carry out the aggressive rehabilitation program required to recover from knee replacement surgery, for example, since I have such profound neurological damage to my legs.

So have I considered taking my own life?  Since I was in my 20's I have determined that I have the right  to end my life. My life belongs to me, and if through pain and disability, the quality of my life has become severely degraded, I have the right to end my life.

However, I have actively sought out safe and appropriate pain relief, which allows me reasonable relief from my pain.  The pain is always worst when I wake up, but I am able to sleep well enough.

The disability which forces me to wear leg braces and to walk with a walker, severely limits the activities of my life.  But with the 'window on the world'  provided by my computer, and my joy in reading, and with activities that include a bridge group and a book club, I have enough to allow me a quality of life which I truly enjoy.

My husband drives me to appointments and activities.  Today I go to have my hair cut and colored, for example.

And I have my son and his family nearby, which also adds to my joy.

So with advanced 'neuro Sjogren's', and advanced age (76), I am not ready to end my life.

I do know, however, that it is possible/probable that I will want that option sooner rather than later.

I need to 'take steps' towards insuring that I have 'death with dignity' within my power.   I need to do my research again.

Thank you for reminding me.

Regards, Elaine

[happylife]

Dear Carolina

Its great hear your sjogren journey and your will to fight it out in spite of the pain that you are suffering.

I hope to take inspiration from you and try to fight it as long as i can.

[Intelife]

Happy life,
Thanks for your well researched posting on this issue. I agree with Carolina that if and when I do choose, I will have the absolute right to end my own, one and only, unique life!

That said, I also agree that it is incumbent upon me to work at staying alive without TOO MUCH pain and discomfort.  In view of this, since my diagnosis this year, ( although heavily symptomatic for most of my life) , I am spending a good three hours daily reading research, other SjS patients experiences, Physician and treatment recommendations etc.etc.

It was through this research that I have started trying many of the suggestions made by folks and this and other SjS forums, including LDN and CBD oil.

However, in early 2018 I went through a very dark period when extreme dental pain in upper left turned into multiple extractions and eventually led to a TERRIBLE bout of Ocular and Facial Shingles.

For four solid months, I could not sleep, or function in any normal way.  The pain and the resulting post herpatic neuralgia were the worst pain I have ever had.  NOTHING would touch the pain other than drugs so strong I became almost comatose...

And YES, for the first time in my life I thought about possibly not being able to continue for much longer.   So I fully respect folks not being able to continue.    At the end of four months after having read all the data on percentages of PHN which continues over time, I found that, indeed about 20% of folks with shingles NEVER stop having the pain. Mi was mortified that I might fall into that group.

Thank Goddess, ever so slowly, I felt minor improvement until here I am now, no PHN.

So I say, fight as long as you can, but if you really have given it your all, you have a right to say BASTA!.

Not directly related to SjS or autoimmune diseases, but a beautiful documentary on assisted suicide is :
How To Die In Oregon.    Last time I checked it was on Netflix.