Self help thread. I am a widow coping getting on with it

lessonlearned

Oh don't get me started. :rotfl:

I have had it with much of western medicine, the sheer arrogance of many medics who think they are God's gift to humanity, the waste and incompetence of the NHS.

I still maintain my husband's condition was avoidable or at least it could have been manageable if we had been given better advice. I continue to research his condition even now. I have to, in case the boys become symptomatic. I have to guide them.

By the time I had acquired the knowledge I now have it was too late, my husband's condition was irreversible, hopefully, if lightening does strike twice and my boys get sick, I can help them.

What gets me Kittie.....is the way some medics point blank refuse to even consider different ways of healing. Their arrogance astounds me, it's their way or the highway. Some of them just cannot see further than their noses, I blame their training.

Did you know they receive absolutely no training in the role of diet, there are few now who have grasped the nettle but they are lone voices. My GP is at least 5 stones overweight.......Typically a medical student will receive one lecture on diet. And even then it's voluntary, they don't even have to show up for it.

Thankfully a few are now taking it upon themselves to learn.

Instead the majority blindly continue to rely on treatments which they know full well to be not only ruinously expensive but which are usually ineffective, addictive and sometimes downright dangerous.

The doctor I saw was Japanese. He was extremely knowledgeable, a fellow of Birmingham university with decades of research under his belt. And yet so often treatments like acupuncture, massage etc are just dismissed out of hand as either hippy nonsense or a totally irrelevant placebo.

No they would rather dish out tramadol or gabapenten or some such like sweeties. It's like a nuclear arms race. First they start off with mild nsaids and then before the Patient knows what's hits them they are addicted to a veritable arsenal of drugs which no longer work and which are making them even sicker.

Big Pharma has a lot to answer for.

There is so much we can learn from other cultures, Chinese medicine, Japanese diets, native traditions, plants from places like the Amazon etc.

But they don't want to know. They think only the west knows best.

[Deleted User]

I 100% agree with you LL. I also think my husband died through gp`s ignorance and pushing asthma pumps at him when he never did have asthma, them came the steroid inhalers, the voltarol retard when he had a bad headache. Then towards the end, the blood pressure drugs after the gp scared the life out of him. The bp drug caused a massive sudden fall in bp, he staggered in and slumped in a chair, I immediately took his bp, it dangerously low and his pulse was also far too low. I got him stabilised and next day, the best doc in the practise and not his gp, cut his dosage by 3/4 but by then the damage was done


The day he died, I got a call from his gp, is there anything I can do for you? Frightened of me taking this further but what the heck was the point. This husband of mine used to enjoy cycling 140 miles a week and hardly broke sweat



I am so very very glad that I did not take up the place I was offered at guys medical school. I listened to my gut instinct and anyway I worked all holidays in a pharmacy and saw more than enough when I was a 18



My gp friend is ill, her husband is ill, they live on packages of drugs to make them exist, can walk and garden etc but don`t have the sheer whizz that I have. Being well allows enthusiasm for things, to speak with energy in the voice and so on. Oh I have to stop too, I keep my mouth well and truly buttoned about health because doctors are on pedestals but surely the people I speak to can see the evidence in front of them

lessonlearned

Oh Kittie.....it does make you wonder doesnt it.

But...here's the thing....we can't turn back time. We can all say if I had known then what I know now. But alas it just doesn't work that way.

All we can do is continue to educate ourselves, take full responsibility for our own health and well being and try and guide our children so they don't make the mistakes we made. Luckily my children don't put doctors on pedestals either. They have learned to question.

I came across a really good quote this morning.

I watched a film called "The Pursuit if Happyness" last night. Yes that's how they spelt it. I had seen it before but hadn't realised it was a true story, so when I saw it was in I watched it again.

I was interested in the real story so I looked it up and have been reading about it this morning. It's based on the life of Chris Gardener, a self made businessman and philanthropjst. Black and poor, He did not have a very good start in life, his mother picked bad men and ended up in jail for attempted murder of her husband who was abusing her and her daughters. Chris ended up in care.

He ended up homeless and despite his trials and tribulations he always remembered something his mother had taught him.

Apparently She used to say "You can only depend on yourself. The cavalry ain't coming".

humptydumptybits

Have had loads of lemon barley water, paracetamol to bring temperature down and feel alot better, still feeling a bit yuck but nowhere near how I felt last night. I am looking haggard, decided to weigh myself and I've lost almost a stone, I can't recommend the diet of shingles in the mouth followed by lots of post shingles pain and stressing about sick friend and genetic tests but if you are desperate to lose weight it does work!


LL are they able to test your sons, genetics seems to be moving forward very fast. One of my sons says he won't get tested if I am positive, if I am it is 50/50 that he will have inherited it. I'd rather know and take any steps I can but I suppose we are all different and maybe your sons don't want to know like mine.


I do think the next few weeks will be stressful waiting for the outcome and obviously it will be disappointing if the result is positive. Then there will be the wait for my children getting tested and their results. If I am negative then it is all over.

Elona_2

LL

I had acupuncture years ago for swollen feet and legs and it helped a lot. One of my dds had such bad headaches she was referred to a specialist in case she had a brain tumour and the specialist suggested acupuncture so I took her to my acupuncturist and it helped her a lot. DD had been quite sceptical of my odd ideas up till then.

I forgot to mention that I have been taking a spoonful of bicarb dissolved in water twice a day for over two weeks now and my knees don't seem to be painful, fingers crossed. There have been research studies done that show it is helpful for arthritis and inflammation in general.

I left the house at 9.30 to get the bus to York to see a DD, forgetting that York races were on. I eventually got home at nearly two desperate for a cold drink and some lunch so am having a quiet afternoon with my feet up and trying to stick to my diet. Pleased I have fruit and yoghurt to pick at and sensible ingredients in the fridge and freezer.

Humpty
Good Luck with the results when you get them and I would want to know as well.

Hugs to all.

lessonlearned

Humpty.....glad to hear you are feeling a bit better. Keep drinking fluids. You are under immense pressure at the moment so take care of yourself as best you can. Let's hope your news is good.

Re my boys getting tested. It's very complicated.

My husband's consultant put it this way.

"We can't be sure but we THINK your husband's illness was just an unfortunate one off. However, we don't yet know enough about this illness because gene testing is incomplete. We know there are some genes responsibile and we could test for those. However, there are other genes which could also be faulty but we have not yet discovered which ones. I am afraid that even if the tests came back negative I cannot give you a cast iron guarantee that the boys are safe".

So there you have it. The tests would be inconclusive. So not a lot of point.

Research is ongoing and I have learned an awful lot since then. We now know that the ulcerative colitis that my husband suffered from in his 30s Was the most likely trigger. It will have destroyed the villa in his Bowel allowing the disease to migrate to his brain, where it somehow reformatted and then got on with quietly and gradually destroying his neurological system.

I have explained to the boys the importance of gut health, of avoiding leaky gut syndrome and maintaining healthy villa. In the past they have displayed early symptoms of gluten sensitivity and now take much better care of their stomachs. They take good probiotics and try to maintain a healthy diet. Neither drinks beer because it upsets them. (The wheat). It was an early sign that all was not well with my husbands gut health but we didn't know that at the time.

So you see I am watching them and monitoring them, hopefully learning from what went before, and helping them avoid our mistakes.

I have told them at the first sign of any Bowel problems they are to see A certain consultant who specialises in the gut/bowel/MSA connection. He is an expert in his field. They must get themselves checked out immediately and a GP won't be enough. Two or three years messing about sorting out bowel problems could be fatal to them, not because they might die from Bowel disease but because whatever it was that affected my husband will most likely migrate to their brains.

They both have private medical insurance, one through work and one self funded. I have told them they must keep this, whatever the cost.

lessonlearned

Elona.....interesting about bicarb and arthritis, definitely worth a try.

My guy also told me to drop the glucosomaine and switch to rosehip. I have read about rosehip before but hadn't tried it.

Anything to avoid surgery.

He told me he has a patient who he has been treating since the middle of the 90s. This man was told he needed a full knee replacement within a year, it's now 2018 and he still hasn't needed surgery.

I was sceptical about the fibro but he assured me it would respond (because its along the same meridian) but it would take a bit longer.

All I can do is wait and see, but I have to say my knee feels much better and I think my fibro pain in my neck and shoulders has improved slightly. The chest Pain is still niggling but then the inflammation will be very deep seated (the cartilage linking the breast bone to the rib cage) so that might take a while.

humptydumptybits

LL I suppose horrible as it is at least they do have a test we can do although of course I want a negative and a positive would be more disappointing but if I am and if any of my children are at least it gives us access to preventive measures, double mastectomy and oophorectomy is alot to get your head round but if we decide against that we will be offered regular checks, annually I think. For the boys the danger, apart from passing it on to daughters, is an increased risk of prostate cancer but not as big as the risk to girls, 80% lifetime chance of breast cancer and 50% lifetime chance of ovarian cancer.


They identified the BRCA mutation in the 90s and now they are suggesting that all women should be screened. Who knows what they will be able to identify in the future. I used to work with a girl who agonised about getting tested for Huntingdons which I think is a particularly cruel disease. I heard she has a baby now so I think she must have had the test and got a negative, she was very definite she didn't want to pass it on. A happy ending which is lovely.


I looked up the specialist I saw, he is very high up in genetics and BRCA is one of his specialities so I am in safe hands I think.



The only good side is they say it is linked to high IQ so that's something I suppose but I think I'd give up a few brain cells and no BRCA but no one offered me the choice. Rude I think. Everyone will be fed up of me by the time I get my results, I can't think of anything else.


Was your husband's condition quite rare LL?



One of my children was a rosehip addict as a child, I guess he should have good joints!

lessonlearned

Damn....just listed a detailed reply and lost it. Stupid iPad.

The shorter version.

Yes his condition was rare. Half the medics we met hadn't heard of it. They were very much working in the dark. When he was diagnosed we could find nothing, even our GP was struggling to find research. Eventually with his help I started finding research in obscure on line, much of it from America. My husband's consultant (Greek) was based in Nottingham but also worked out of Boston university, so he divided his time between the US and the U.K.

The gastro/bowel/MSA guy is also Greek and also spends time in the US. That's where most of the funding is.

My GP did ruefully admit that I ended up knowing more about my husband's illness than he did because I spent so much time trawling academic papers. He just didn't have that kind of time,

lessonlearned

Decided to split this post, just in case I lost it again.....

Re testing......it's a double edged sword.

If you can use the testing as a diagnostic tool to enable preventative measure to be taken (as in your case) then that's wonderful, in fact it's truly miraculous.

However, testing for something that cannot be prevented has to be more problematical. I knew a man who had Huntington's. His two sons were tested, one was in the clear, one had the gene. He was handed a death sentence and he just couldn't cope. He was in his early 20s.

We were offered testing, the boys said no thanks.

Were they right, who knows. They are getting on with their lives. We never discuss it. I watch over them. I have written a letter of instructions which I have filed with my papers should they become symptomatic when I'm gone. They know who to see or if that consultant is no longer around then they know what help they need to look for, they can save a lot of messing about and hopefully gettimely treatment.

As I said they've changed their diets to try and encourage good gut health and avoid any bowel problems. At this stage there's not really much else they can do.