I am 64. I have had depression problems for decades. I have recently found another drug that helps a great deal. However, I still have severe problems. The reason is that I should long since be dead. I have at least 4 diseases that should have already caused my death. These include Hep C for 45 years, 2 hemorrhagic strokes in the last two years, a serious immune system problem that should have caused cancer long ago and a very rare and serious type of apnea that has cause a great deal of long term brain damage. None of these problems are treatable for me and all should have killed me long ago. Now, after the two strokes I most certainly should be dead but all I have is a minor problem with aphasic agnosia.
It is virtually certain that I will have another stroke in the near future and there is a 90% chance it will kill me soon. However, there is no certainly at all. I live in a remote area with no access to medical specialists that could do any meaningful testing or examinations. MRI is not available except an 8 hour drive from here and the wait time is over a year. I have no way to tell what my chance of death is in the near future or perhaps in a longer time (unlikely but unknown). How the heck should I deal with this? I know I will die earlier than I should but that could be tommorow or it could be several years or more. This is driving me into a hole that I have a very hard time dealing with. It is not ordinary depression that I have had from my bipolar type 2 but something different over which I do not have control, drugs or not. I have been married for 43 years and it is driving the both of us crazy. I hate the thought of leaving her alone. How do deal with this? Is there a way?
Oh I don't really know how to respond to your question. I know we could all die at any time, but I can truly understand why you feel your death can be close. How to deal with it, how can we advise this? It is not something I would personally know how to answer.
You are here as you obviously want to reach out to others understanding people. I am nearly 73 and I know my death could be close., I obviously do not have health problems like you. I presume people who know they have a limited time left on earth prepare themselves. And yes the worse thing is to leave those we love behind.
It sounds like you and your wife are prepared for the future, and that will make your time together more precious. How do you deal with it? Honestly, all I can say is be thankful for the years you have had together.
We have no control on when we will die. None of us know this. It could be tomorrow, it could be a long time from now. You know that you could die soon, and please cherish every moment now.
Do you live close to any Drs at all? Have you thought about moving closer to Drs and hospitals?
You're right, none of us really knows when it's going to be our time to go. We have to try and enjoy every second we're here or we'll waste that time being upset, depressed and anxious.
You sound like a very strong person who has been through alot and you're still here. That's wonderful!
If you could get in to therapy I think it might really help you with your fears. Would that be possible?
I think, despite the difficulty, that you should make seeing a doctor for the appropriate tests and treatment possible. Couldn't you arrange to see a doctor to schedule tests all within a few day's period? Then you could go to that area, get a hotel and stay a few days while you handle your health concerns.
I can understand the conundrum, but I don't think you should just throw in the towel and call it a day just because access to medical care is a bit difficult for you. You're still young and with the right treatment, you may extend your life for many years. We're not talking about something like terminal cancer that has no possible cure, in that case, I would recommend trying to find peace and acceptance that death is imminent. It doesn't have to be in your case. I think it's wise to PREPARE mentally for failing health, but I think your focus should be on doing whatever you need to do to get medical care, not just find a way to accept that you may die.
I wish you the very best and hope you're able to work something out. One last suggestion, many big hospitals will have resources for people not from the area (like apartments/living arrangements). Call the social services dept of the hospital you would be treated in, explain your circumstances and see what they can do. They may organize a lot of it for you, to make it happen.
Thank you all for the comments. I will fill you in more later today. I must leave to the hospital now for a phlebotomy to control my too high hemoglobin level. That helps to keep my LQT syndrome under control.
I live in Central British Columbia. The medical system in the interior is very poor if you do not live near the several cities. Our system does not provide enough doctors or especially not enough specialists. There are no specialists in our hospital except for a surgeon. All we have are heavily overworked family doctors.
I have one of the best. Even so, seeing a specialist anywhere here requires a request from your family doctor and that is hard to obtain. The specialists in the three main interior cities are overloaded to the max. We also have fewer MRI machines in BC than any other place on earth. Not joking either.
Even in Canada, which has the fewest MRIs in the first world countries, BC is even worse. BC has one fourth as many as the Canadian average. Wait lists on our government health system for MRI studies range from a year to 1.5 or so. The very few private machines cost $1000 for a scan.
On top of that the driving adds up to a large expense. We don't have a lot of money left since I haven't worked for 15 years.
What this all means is that because of my age the younger patients have first chance for treatment and it is most likely I will get none.
On top of this I have a medical problem that very few doctors have even heard of. I have CCHS ( Congenital Central Hypoventilation Syndrome). This is an uncommon genetic disease with almost no survivors at birth. If a baby survives the first time it sleeps it is very unlikely to live more than a few years. A small number now make it to around their 20's and almost none live longer. There are around 1000 people alive with this on Earth. There are maybe 10 to 20 or so older than 20 years old. I am most likely the oldest on Earth by at least 10 to 15 years.
Nobody knows what to do with me or what the possible treatments might help me live longer. I have a lot of very long term accumulated brain damage from the severe apnea that CCHS causes. The effects are not as bad as one would expect because I started out with an IQ of around 150 which has now fallen by around 40 points. That is called "cognitive reserve". My brain has been able to rewire itself to circumvent the damage, but not entirely
For having brain damage you sound very coordinated. I believe you both have gone through a lot like me, but my spiritual beliefs have gotten me alive till my 62nd birthday, hopefully with that and around 8 pills and insulin shots 3 times a day I' ll live longer to see my little 3 grandchildren grow. With the healthcare plan proposed here we not so old people will be confronting your same problems. Have faith...get support from friends or family or right here. Maybe we go to rest tomorrow, maybe in 15 or 5...nobody knows. Still take each day one at a time, look around at beautiful things...God bless you and keep us posted!
You would surprised and amazed if you saw my brain. I am. I have well over 100 microbleeds, a significant amount of white matter pathology as well as the two hemorrhagic strokes. I also have at least one aneurysm and may well also have Arteriovenous Malformation (AVM) according to my neurologist. He is the doctor I really need to see but it is an 8 hour round trip. He also says he has no reason to see me again. Sigh.
What is really getting to me is that I always have things to do and more planned. I have a machine shop that I have had for decades and in the last decade I have equipped it with many easy to use motorised automatic systems so I can still run it. I am also a computer nut and I very much enjoy working on my computers. I wrote my first program in 1964 or so.
When I croak the computers are no big deal other than containing my very large image collection of my own photography especially from my observatory.
What really bothers me is what to do in respect of my other projects, especially in my shop. I want to use it but starting a long 1 or 2 year project does not seem like a good idea. It can cost a lot of money over time and it doesn't seem wise to spend it.
When I go down to my shop in the basement I often look at all the neat stuff I have collected to build things. Then I think how slim the chances are that I will have much time to do so. Then I start crying hard and cannot stop for a long time, sometimes hours. It makes no difference at all what drugs I have, it is times like that when nothing at all can stop my severe upset with my situation.
I have no idea what to do at times like this. Nothing will lift me out of the very deep hole I get into. It can take days to gradually come back to more or less "normal". For me "normal" means somewhat less constant physical pain and not very depressed, sort of.
I very much appreciate the advice from all of you. There are nearly no opportunities for this sort of conversation here. It is making me feel somewhat better.
In the 1969 Film, Paint Your Wagon, the character played by Lee Marvin, said this...."There's two kinds of people, them goin' somewhere and them goin' nowhere. And that's what's true."
What we focus on is exercised and becomes stronger. When we focus on regrets and lost chances and old dreams, those thoughts make a home in our brain and replay over and over and over, like a skip on a record that you might have owned in the 70's.
If you think rationally about it, when you were born, you came into this world with nothing, not even a tie or a pair of pants, and yet we don't sit and ruminate on that incoming as a loss or a negative thing. Its just the way it is and it happens to everyone.
When we die, we take the same thing with us that we are born with.
Nothing. Yet those thoughts cause us much distress and depression.
Its just the way it is and it happens to everyone.
I too have rooms with all sorts of wonderful things I have collected over the years. I am also a photographer and my PC holds thousands of images that I captured and still look at today. I have tools and beads and dremel tools and still try new things everyday to keep my mind occupied and revved up and I too do not know when I will die. It could be today, it could be tomorrow, but if I don't do a project, I will still die. I will die either sitting in my chair worrying about dying, or making a really neat collage of images in my photoshop that maybe someone, anyone will appreciate some day down the road.
Today I went online and registered for free classes at MIT and then saw where Yale and Princeton are also offering free online classes...I am checking them out tomorrow...Imagine that, when I did go to college so long ago, MIT and Yale were only a dream that I never aspired to and now, they are welcoming me to come and study.
There is so much to be grateful for and I do hope you can make a list of your own gratitudes and share them with us here.
I do wish you the very best that life has to offer....
Dear E: Some days I feel I live in a big pain bubble, besides fighting PTSD and diabetes (I will not talk about a few more or we'll all get depressed). We know it is not easy and sometimes we ask WHY ME? Then I see a St. Jude or hungry kids in some very poor area announcement and am grateful for the life I've had. Nowadays had to move 3,000 miles to a state I knew nothing about, leaving half of my heart (a daughter and my grandaughter) behind, waiting for my social security checks to start. Until, my beautiful son and his family are backing me up. Ah! No medical plan yet; lots of tests on hold. BUT, do continue with your work or hobby...I have my books, love music and looking out the windows when going out to buy my things in this beautifull desert make me feel God is real, and when "the roll is called up yonder" HE will maybe explain why all this suffering upon us since our little eyes were opened. If not, anyway by being in his presence, no pain, no tears for eternity, will we be rewarded. In the meantime, it's 2:21am and I woke up and included you and your wife in my prayers...it must have been hard on her too: my "partner" for 22 years, a very intelligent man, so bright, died of Atzheimer a year ago. And that was a very cruel disease on me. See? But I got up from being in very poor physical, economic and emotional conditions, took very hard decisions and got myself with 2 suitcases in an airplane...leaving everything else behind, hope I can visit my grandaughter next year. I believe I can adapt to this way of life with my son's help. As I told you before, take it day by day, some not so good, some I cry a lot, BUT like I say: tears are the heart's sanitizer...they need to be applied periodically. God bless!
I have had a very good life even with the always present pain since the 70s. The pain doesn't matter much anymore, I am used to it.
It is leaving my wife that is the worst and that I cannot deal with. Actually dying is not a big deal to me. I have been close to it for a long time. Now it is far closer that it ever was.
We have had a wonderful life, both together and doing our own things. I am a person that would never hurt anyone and don't like to see even insects hurt. I very much like helping other people and have done so now and then for many years. Just this year I spent several months teach in young man with severe autism.
Since I am a very high level Asperger I know to a great degree what it is like. Nobody without such a different mind can ever really understand it. I do and we got along fine. I taught him how to draw even better than he already could. I also taught him to read at the best he could.
What really upset me is that the government cut off the funding for such work. It is now going to an orginazation that specializes in ripping off the recipients. I only charged a small amount, the organization is changing all the can. I used some of the money they gave me to buy things for my student.
We have gone many places including Europe a couple of times. We have friends and relatives in many places. I have canoed into the deep wilderness on a regular basis until I could no more.
I have taught children and adults in everything from learning to get along with others to computer programming to improve job skills.
My life has certainly been interesting with nothing to regret. I have little in the past to dwell on as a unhappy time. Unfortunately that is making it harder to accept what the near future will bring.
Why don't you work on your projects? I think it would be really good for you. Do it when you feel like it. The good thing about your kind of projects is you can work on them when you feel like it and leave them for later if you don't feel like working on them.
I do still work on projects, but only little ones that I can do without having to stand much. It takes me about 10 times as long to make things these days compared to years ago. I don't get upset much about that but it does mean that anything fancy will take a long time.
I wish it was possible to post pictures. Is it? I don't use Facebook or Twitter. I don't like them very much. 140 characters is not enough for what I need to say and Facebook is something I do not trust much. Have a look at my website to see what I do. ixian.ca/gallery
You can post pictures...go to your profile page (click on your user id). There is a "photos" section where you can upload pictures. That would be great. I also agree with the others, continue working on your projects and as much as possible, just live life as it is, in the moment. You cannot prepare for death really. The only thing of course would be to make sure your affairs are in order, to make things easier for your loved ones, but beyond that, I would try not to over think it. I know, easier said than done, but try to enjoy your life. Tomorrow isn't promised to any of us!
Great! Glad you figured it out! And, glad you found us!! :0)
So sorry you have so much on your plate. No doubt anyone in your position would have recurring thoughts like you do. It's got to be very scary to feel like you don't have many options to address the health concerns you have. Most definitely you have a complex case. As a nurse, it's shocking to read.
I hope that your doctors are able to brainstorm and come up with a solid plan to at least minimize your risk. In the meantime, try to stop and smell those roses, and enjoy life as much as you can. Hopefully, you'll be around for a long time to continue enjoying it. Also, keep in mind that while your case may be one that's very difficult, nothing is impossible, and modern medicine is quite amazing. Try to hang onto some hope that a good plan will be formulated to improve your prognosis.
Please keep posting, we're always here with our listening ears on and our broad shoulders to cry on if need be.
I thank you all for your thoughts and assistance. I have been thinking a lot about what you have said. I am feeling better about my situation and have made some decisions that my wife approves. This is a good site and I will look around to see if there is anybody I can help. While I am not a doctor I have a lot of medical knowledge as I have been studying medicine since I was young. I know all the big words and have gigabytes worth of top medical journal studies. I have read them all. Since I am not a doctor I can give some medical explanations including the statement to See Your Doctor when a medical question comes up.
I did enough university work to qualify for a masters degree (over 200 semester credits) but never got around to actually getting the piece of paper that says so. That was because we moved to a remote area and I could not afford to spend the extra year away from home. My employer didn't care about the paper, they knew how much education I have.
The aeolian harp is a very cool device. It makes the most incredible sounds in wind, rain and snow.
I'm so glad you found this site. I've been a member here for years and the people here are truly wonderful. Very supportive and caring.
It does make you feel better when you can help other people. If you have medical knowledge I know there will be so many people you can help.Check out all the other forums here. There are always people needing advice about different things.
There is one thing that people have to watch out for about me. I am a top of the test score Asperger's type. That means I fairly often will talk (or write) about things in a very straight and purely factual way. It has taken me all my life to learn how to speak in a way that the majority of the population considers to be friendly and not totally an unpleasant antisocial butthead.
Asperger types very rarely lie about anything and will talk and explain things without any consideration for the feelings of others. It never occurs to them that people have feelings that might be offended, even if what they say is absolutely correct.
I'm not too bad on that front any more but not always. Being an Aspie is something that never goes away.
Ha ha! I'm sorry but your comment made me chuckle. You have not been a "butthead" at any time with any of us. You've been so nice.
I do know about Aspergers. I think you would be great at helping people here because many times they wants the straight facts.
I saw your pictures. I love the ones of you and the horses!
Good news! As I said earlier, I have a lot of knowledge in the medical area. I also have good access to many medical journals so I do not have to pay for them. The way that happened is that if you are a medical student they will give you access after only six months or less of publication at many journals. To sign up you only have to pass a fairly steep medical test in the area of your choice. That was no problem for me.
I check the contraindications for the various drugs I take every once and a while. I checked the antidepressant I take (Cipralex) and discovered a fairly new problem that has been found. The paper on it was put out Aug 20, 2013. They discovered that it can cause bleeding in many people that take it and it isn't rare. In particular, it can make it a lot easier to have a bleeding stroke, like I have had.
The chance is almost doubled which is a very bad thing. The good part is that I am still alive and have already figured out a different medicinal protocol that will make it possible to remove that drug from my regime. This means I may well live longer than I suspected. Yay!
Oh my gosh! Thank goodness you have medical knowledge and found this out. I hope you are now going off of this med.
It truly is great news!
Oh, I showed my husband your pictures and he was amazed with your inventions. Post more if you get the chance.
I am already making the change in my drug combination. I set that up myself. My doctor depends on me for the research on my medical problems because most but the hep c are all rare. The Hep C is the least of my problems. I have had it for 45 years thanks to being infected by the US Army. I have zero indication of liver problems, which is also rare.
Okay, I sure will. I think he will really enjoy that. Thanks.
I think it's good to be a very knowledgeable patient. Many of us put way to must trust in our Drs and just go along with whatever they say. I'm not saying there are'nt wonderful Drs out there because there are. It sure helps for us to know about our meds and medical problems though.
I'm so glad to hear you don't have any liver problems. My mom has a fatty liver and was just diagnosed with autoimmune hepatitis. Of course I'm scared out of my mind. And, of course I'm researching this as much as possible.
Are you tapering off the Cipralex? Or, just quitting cold turkey?
You don't quit Cipralex cold turkey unless you like feeling you are having electric shocks and some other nasty side effects from quitting. You must taper off at the rate of about 5 milligrams per week. I am down to ten now for several days. My Dr says I should go down with it as fast as I can take so I am only taking 4 days to drop 5 mg. I am actually feeling pretty good today which I did not expect. I am also taking Lamictal also which is probably reducing the possible bad effects. My doctor was impressed when I designed a new titration schedule for Lamictal which just about guarantees that you won't develop the nasty rash it can cause.
Most Dr's are pretty good people and can be trusted. The primary problem that family doctors have is that they need to know something about everything. You can't expect a family doctor to be an expert on much of anything so they can miss things.
As far as I am concerned the family Dr's have the most difficult job of any of them. Not only do they have so much to know they also must keep up with every medical development if they want to stay a good Doctor. Mine is excellent and is constantly studying the latest developments. I enjoy doing research which I print out and give to him on every visit, about once per month.
Earlier this year I engraved a brass plaque to put on his office door with his name on it. He was impressed and appreciated it. He is also the Chief of Medicine at the local hospital so I get good treatment other than the serious lack of specialists here.
Good, I'm glad to hear you did'nt quit your meds cold turkey. That was my fear. Yes, I know all about the electric shock feelings because I've been there myself trying to taper way to fast off of a med.
Your Dr should be very impressed. You did a great job and you're a very knowledgeable patient.
I know, I do feel kind of bad for family Drs because they have to know so much. I'm so glad you have a good one.
Did you really make a plaque for him? That was a wonderful thing to do. I bet it means the world to him.
You sound so much better!
You are asking a question none of us can answer about natural death or accidents. We don't know when we'll die. I have a friend who is 27 and has stage 4 cancer. His doctor says he has two months to two years to live, depending on how he responds to treatment. He is young and is missing out on much of his life along with having severe pain. You have been lucky enough to live into your "silver" years. Be happy with what you have had and cherish what comes. When you do die, you can be satisfied with your life instead of regretting what you wasted thinking about your death.
You are quite right. The thing that bothers me the most is not my own death, after that I will have no regrets or other matters to worry about.
I love my wife dearly and the feeling is mutual. It is the pain and extreme difficulty she will have dealing with the circumstances. I cannot stand to be responsible for that situation. On top of that I have had to deal with serious depression most of my life with no way to treat it. I have medical conditions that very strictly limit the drugs I can take to help me live a close to an ordinary life.
In the past I could help myself to deal with the various painful problems, both physical and psychological. I no longer have much I can do to pull myself out of the low cycles.
Our daughter has the same bipolar prolems but she is only about 30. She takes no drugs and is able to stay mostly away from the negative aspects of this life long and persistent disorder.
She climbs in the mountains and I used to canoe deep into the back country as well as other positive activities.
When we love people, we realize on a deeper level that someday they will leave us, either through circumstances or death, but most adults are aware that we never have anything forever.
You say your wife is a mountain climber, I am also, and I'll tell you that it is not a sport for the faint hearted man or woman. Everytime I put my first foot forward on the rocks I knew there was a chance I would not come back in the same condition I left in. I am wondering if you have had conversations with your wife about your death and what she plans on doing once you have passed on. I am sure she will be well taken care of by your pre planning, but I am also wondering why you think she will not be able to handle your passing at all....
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