Sorry in advance for this long post. I just needed to talk to people who would understand:
I have been alive long enough to have heard many doctors tell me this and that and tell my friends and spouse this and that and tell my parents this and that. And as the years continue and as the latest fad of favorite diagnosis changes and as pharmaceuticals change their stories about the drugs they are pushing I have come to realize that doctors should be listened to only as a consultant. Sort of like a high paid electrician or plumber; a technician who has learned a current piece of knowledge.
It is always important to believe the patient. To never hear that you, the patient, are wrong, hysterical, imagining stuff, a baby, not tough enough, or worse yet , to be told that you have no right to read information for yourself or on the internet, or come to your own conclusions.
I could list wrong diagnoses and terrible physician mistakes and abuses that have led to the death of the patients under their care. I have worked in hospitals all my adult life and am sickened by what I have seen.
However, for some strange reason I still go to doctors, especially when I am frightened, listen, believe, pay my bills and look to them for comfort, explanations, and a wisdom that I long to find in some grown up person that would sooth me and make me feel less afraid. I know this is a fantasy and yet I keep wasting money and anger on this experience.
My husband has what is now called PSP (what it is might change as fads and research change). Remember the old Senility, hardening of the arterioles, senile psychosis diagnoses (if you are young enough). Everyone who HAS PSP has different symptoms..hum? what does that mean...most obviously it means that we have a group of different problems lumped together under a name...that for now seems to have some heuristic function.
I have just come out of hospital with a bill of $5,000 for what has always been severe intermittent back pain. I left the hospital in worse shape than I went in and my husband was in a complete terror thinking that I had died. The doctor I saw (briefly) said I needed back surgery $70,000 but that he wouldn't do it even if I had the money because I was a "baby" and couldn't tolerate any discomfort. We are talking about pain that had me on my knees praying for God to kill me.
I will not go into the whole story of this man's treatment of me, lack of understanding about my husband, and obvious greed. But once again I can only blame myself for looking for help where there is only illusion and expense.
Sorry for the long post but I needed to get this on paper and off my chest. My husband has not recovered for his terror about my death and still thinks I am dead. He feels helpless and frightened. I am in a rage, still in pain, and now in debt.
Thanks you all for listening. I needed to talk,
Jill
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Oh Jill, I'm so sorry you are going through this and your husband also has the worry knowing someone he is dependent on is in so much agony. I have also prayed to be put out of the misery of severe back pain in the past so know you are not a baby. I can only pray now that the pain will go without surgery, very soon.
I have a moan about our National Health Service on occasions but should really be grateful for what we have.
THank you so very much for your understanding...The entire medical unsurance thing in USA is a crime. as is International Insurance. For me to buy health insurance, major medical, would be over $500 a month And that is our "free" medicare. Here in Costa Rica I pay $250 a month for national health care but If I need to use it it is at least a 3 year waiting list for "emergency" surgery. I think something has gotten really crazy with the world.
I know my back pain will get better in probably another month or two. What makes it impossible is Bob's PSP..I cannot bend or carry anything therefore?....In CR no nursing homes at all they always depend on their large families for help. Time to adopt some brothers and sisters.
It's hard to conceive what you are dealing with, I can't imagine being in your shoes, you are wonderful to be coping with all that, well maybe, coping is not the right word,dealing with it is more like it.
As you say sometimes we do know better than the 'Professionals regarding our loved ones, they see them and us for a few minutes a year, I must say that I have more knowledge from this lovely group than from anyone. And the helpline too. Hugs Jill xxx
The doctor at the hospital had such contempt for me and treated me without any concern. When he found out I had no money for the surgery he was out the door without a goodbye or a plan B.
I think I am not going to pay the $5,000 bill I owe the thief...
Thank you for your reply. It really truly helps to hear from you.
Poor you - what a nightmare . And here's me yacking on about primroses - we just don't know how lucky we are in this country our National Health Service may not be perfect but what would we do without it ! Just hope the next government doesn't continue the same destructive course that the present one has been pursuing .
Can I apply for citizenship???? Or be adopted? The USA has gotten so terrible. If you are not a consumer you don't count. They even want to concal our pensions (social security) which is money we had to pay the government out of our salaries and now get a tiny bit back as a "pension"..which is not nearly enough to survive on. It is not a country to grow old in. It is a country for the young and strong who can work 80hrs a week and go into debt to survive. No one has time just to visit or spend with their children since it takes two full time salaries just to pay monthly bills. That's why we moved to Costa RIca. But still have to pay US taxes as will as CR taxes..Where can you run to???
Don't underestimate the healing power of a picture of primroses, Georgepa, please. They have brightened my day, several times already. I do envy your NHS, too, but then I'm pretty sure there are plenty of people in this world who would be grateful for the stingy clunky expensive 'system' we have. Perspective matters. I try to remember that as we go. Love and peace and primroses, ec
Jill you have my total sympathy. I have avoided doctors all my life, in fact writing that I realized I've seen more doctors due to C's PSP than I have probably come into contact o with on my own account in almost 67 years. The private hospitals here are as you describe and some doctors in the state system also try to charge as much as possible. But for some reason we have been very lucky so far. My daughter who needed a small surgery done 5 years ago when she was living in Istanbul, and did a thorough job of researching costs and finding a surgeon she trusted, eventually got a really good deal in a private hospital and, when it came to paying the bill - which I was there to do - she asked for and got a discount for cash! I was gobsmacked. However, she said the experience of visiting so many doctors prior to finding the right one was a major eye opener. And the huge difference in their charges was amazing. And she also said that if a doctor examines you s/he will always find something wrong. And I think she is right on the money there. Being a doctor can be a licence to print money. Take it easy, get some sunshine on that back and good luck with acquiring new family. I am now committed to relying on family/friends coming out from UK for holidays and helping out while they are here. First guest of the year is here right now and we have others 'booked' in through to end of April. By which time more will have bought flight tickets and my garden may even get weeded! Daughter has found flight for early September for her 'permanent' move back here. If I wasn't so tired I would be smiling with optimism about the summer ahead. Plus it's raining again today!
Poor Jill. I hope you soon feel better. Chronic pain must make your life a night-mare and then to have your husband so ill. I send you a big hug [ gentle so not to hurt your back ! ] Jean
Thank you for your kind reply!!! It helps so much to post and to read and to hear from others. It really makes me feel understood which is such a gift.
The problem is complicated by fear...If I could just keep the fear from the door..so much would be easier. I don't even know what I am afraid of. But to be sick while Bob is so sick is impossible...time for the glue factory with all the other old horses.
With PSP is isn't different problems lumped under one disease. Since the disease is in the brain it can attack different areas of each persons brain. Thus it can cause one symptom in one patient and not in another. There is only one disease with various symptoms depending on where the brain is attacked. IMHO Jimbo
but what is the "disease"...and why such variation as opposed to similar degenerative neurological diseases that have distinct diagnostic criteria even given wide variation. Remember all diseases started out named in the most general way and as research continues and as medications were developed they become more refined. It is too easy to say the area of the brain...look at Alzherimers, or Parkinsons, or MS...the overlaps of these diseases are not just because where in the brain..Also this is too simple a notion of what the brain is and how is works..I think we need to be very cautious about too easy an answer with so much not known. Is it Parkinson's or Alzherimers and what exactly do these labels actually mean. Remember that most of the diagnostic criteria have to do with what insurance companies will pay for and the fact that as humans it relieves some of our anxiety to give things names. Again look at the history of medicine for a real interesting look at how we diagnosis and why.
I AM SO SORRY THAT YR BACK IS OS BAD ABD I HOPE THE PAINKILLER SWILL WORK FOR Y
HTE NHS IN THER UK IS REALLY GOOD IN COMPARISON THERE SI A LOT FO DEBATE ABOTU HOW FUNDING DEPENDS ON HWRE YOU LIVE BUT I HAVE Just heen awarded NHS FUNDING FOR MHY CARE WHCIH MEANS MY HOURS CAN BE INCREASED WIHTOUT ANY EXTRA I ASSUMW YOU MEAN CCANNAB9S MAINLY,M ME TI THINKHINK
APPTS/. AR EBIENG PUWT BACJK BY 3 NONTHS IN SOME SECTOR SFO THE NHS IN NW ENGLAND (NEUROLOGY/ ENT AND EYES TO NA,MEW BUT 3)
Hi Jill, don't know what to say! You must look after your self, somehow! Don't know how, but get that back sorted, think most of us have at some stage suffered from back pain, YOU ARE NOT. A baby!!!!
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