Category: Autoimmune Diseases

Was 2019 really that bad?

If you’d told me in March 2019 that I wouldn’t write another blog on “arthritis and me” until 2020, I would have laughed and said you didn’t know me!

I had started two new drafts. They will be finished one day, but first I have to write about breast cancer and get that off my chest – excuse the intended pun.

“Breast cancer and me”? I mean…. that happens to others. People who are already managing chronic disorders don’t get cancer as well. Or do they?

Well yes, it seems that they do. In that sense people with chronic disorders aren’t different from anybody else. Nevertheless, most of my friends were very shocked and found it rather unfair and that I had already had my share of health issues in the last few years.

Today, looking back from these first days of 2020, I feel that apart from the fact of not being able to write any blogs or do much beyond managing the daily essentials for several months, 2019 was not such a bad year.

The year didn’t start so well and that already blocked my ability to write. In July I went for a regular Mammography as is recommended every 2-3 years for women of my age. A couple of days later the phone rang and to my surprise I was asked to come into hospital for a check. “It’s probably just a shadow,” the woman on the phone said. “It’s usually nothing. But to make sure, you should come in.” Another couple of days later I was under the ultrasound and then it seemed like endless samples were taken for biopsy using a sort of pressure gun that was held against my breast and took tiny bits of tissue. Very uncomfortable

I was asked whether I wanted the results by letter or phone. It seemed logical to get the information as soon as possible, so I opted for a phone call. This came in the early evening two days later. The doctor who had taken the samples rang me. “Good evening, Ms Safford”, she said. “Unfortunately….“ and after that I understood almost nothing. My reptilian brain, the Amygdala took over. Flight or Fight. My cognitive abilities were gone. I have since learnt from others that this is normal. It’s the shock.

A week or two later the exact diagnosis was explained to me. Luckily, I took a friend to the hospital with me, because despite my efforts to listen, I was still unable to take the information in. My friend took notes and then explained to me, I understood that the cancer had not spread. Treatment would be surgery and radiology over several weeks, but no chemotherapy. Most importantly, I would not die and could fully expect to be cured.

Surgery and radiotherapy went as planned. It was a strange experience having a disease that is considered so serious and generates so much fear, yet my own diagnosis was positive. That meant that my own feelings were that this breast cancer was much less important than the arthritis and intestinal problems that I had experienced daily for years, and for which there are no cures.

Brustzentrum, Inselspital Bern
Feeling frail but well after breast cancer surgery

The hardest part of the story came after surgery. My doctors recommended that I should stop the medication for the arthritis and bowel disease, which has completely transformed my life in the last 4 years by enormously reducing the pain, inflammation and tiredness. See my post How it all started for the story of my amazing improvement . The drugs are called TNF-alpha blockers, because they block messengers in my immune system called TNF-alpha, which are thought to be malfunctioning, and are causing my illnesses.

However, it is believed that TNF-alpha normally plays an important role in the immune system by fending off cancer and destroying potential tumours. TNF stands for Tumour Necrosis Factor. So obviously, someone already diagnosed with cancer, will be recommended not to take this medication. That advice initially really devastated me, but then it sent me on an important journey to pursue my needs as a patient and not just to follow doctor’s orders. I write about that journey in the next blog… coming soon.

Featured photo by Vernon Raineil Cenzon on Unsplash

A new F-word: FASTING – Love or Hate?

Next week is Ash Wednesday when the Christian fasting period called Lent begins.  I’ve never fasted.  It always seemed rather uncomfortable and difficult.  Until now I couldn‘t see any benefit and feel that managing AS I have enough to do.

The more I read and try things out, the more convinced I am that diet is important to my condition.  We know that AS is about 95% hereditary, so I couldn’t have stopped it breaking out.  But what I eat can maybe influence the progress of the disease, and most importantly how I feel on a day to day basis.  A good diet should also help to keep other health issues at bay, which result from chronic inflammation.

But not eating at all?!   NOT TOO SURE THAT I WANT TO STOP EATING ENTIRELY!

Beautiful organic lettuce
I love my lettuces – this one was grown organically in my garden!

So what is fasting all about?!  HERE IS WHAT I FOUND OUT

The first thing I found out is that I could fast in many different ways.  I could not eat for just 8-12 hours, which is called “interval fasting” and seems the same as eating early in the evening; or fast for perhaps as long as 3 weeks.  I could eat nothing at all, or just limit my diet, for instance to juices or fruits.

The second thing that I realised is that not only Christians of practically all denominations, but also every other leading wisdom tradition, such as Hindus, Muslims, Buddhists, Jews, observe fasting at certain ceremonies or times of the year.  These are traditions which have held for thousands of years, and are based on collective and accumulated knowledge.  Such customs are a spiritual practice but also often developed for practical reasons.  In Western Europe before global trade and industrial greenhouses, food was getting scarse by Spring, so there were good reasons to eat less!  But maybe there were health reasons for these practices too, which could not be scientifically proved, but were observed.  The ancient Greeks believed in fasting.  Indeed Hippocrates is quoted as saying: “Instead of using medicine, rather, fast a day.”

The third thing I found is that Western medicine does not advise fasting, particularly for people who suffer from serious chronic disease.  The fasting article in Wikipedia discusses fasting in religious practice at great length.  Medical applications are referred to only with reference to fasting before surgery or medical tests. 

Alternative medicine gets a one liner in Wikipedia: “Although practitioners of alternative medicine promote “cleansing the body” through fasting, the concept is quackery with no scientific basis for its rationale or efficacy.”

But the fourth thing is that I found an article on the effects of fasting on rheumatoid arthritis in the renowned medical journal “The Lancet” in 1991.  Its conclusion is: “Fasting is an effective treatment for rheumatoid arthritis, but most patients relapse on reintroduction of food.”  But then, after 7-10 days fasting, patients were put on gluten-free vegan and then lactovegetarian diets.  A control group ate an ordinary diet.  The final result: “The benefits in the diet group were still present after one year, and evaluation of the whole course showed significant advantages for the diet group in all measured indices.  This dietary regimen seems to be a useful supplement to conventional medical treatment of rheumatoid arthritis.”

Has this research on rheumatoid arthritis (RA) been followed up?  Yes, a bit!  I found an interesting article from 2014 called “Fasting: Molecular Mechanisms and Clinical Applications“, which states that the positive effects of fasting on RA have been supported by four differently controlled studies.  The authors write: “..for many [RA] patients able and willing to endure long-term fasting and to permanently modify their diet, fasting cycles would have the potential not only to augment but also to replace existing medical treatments.”

Is fasting really “quackery” as Wikipedia claims, or has not enough research been done to establish its value?  And what about the effects on AS?

My fifth thought comes from new knowledge gained in basic medical research.  A process which might have played a key role in the positive effects of fasting for patients with rheumatoid arthritis is Autophagy.  This is a sort of automatic biological cleaning programme.  The removal of waste products and old debris is essential for the cellular and organic fitness of any living organism.  Autophagy describes a fundamental process to degrade and recycle old cells, and then use them for new purposes or as a source of energy.  Yoshinori Ohsumi who discovered the processes and elucidated the basic mechanisms of how autophagy works, was awarded the Nobel Prize for Medicine in 2016 for his work.

Autophagy, as a recycling and cleaning act, is essential in many physiological processes.  It is triggered by the need to adapt to a lack of food caused by starvation or intentional fasting, but it is also a response to infection.  Furthermore, it is now known that mutations in autophagy genes can cause disease, and that the autophagic process is involved in several conditions including arthritis, cancer and neurodegenerative diseases.  But nobody yet understands how.So perhaps the view of fasting will change in the next years.  More research is needed to understand autophagy and how exactly it may be connected to arthritis.  We might  find out that autophagy could contribute to the treatment of diseases, perhaps even by fasting!

Am I really what I eat?

In the bad old days when life seemed to be filled only with pain, I used to comfort myself and find moments of peace with the thought: „I am not my body!“ If I could see myself at a level of consciousness where my soul and not my body was in charge, then the pain lost its power over me. That was rare, but it did happen.

If I am not my body, then I am also not what I eat, right? Up to now I believed that medication, exercise and stress-reduction are more important for my well-being, than food. However, the more I learn about diet, the more I think that it may be important too. Diet seems to be the question that interests people the most.

The leading Swiss charity for musculoskeletal disorders, the Swiss League against Rheumatism, recognises that many patients would like advice about diet, but do not know where to find reliable information. They publish an excellent series of articles explaining the different views (German, French, Italian). Many rheumatologists are sceptical of or reject any significant dietary influence on the development of chronic disease, and fear that special diets may lead to nutritional deficiencies, and make things worse for patients. At the other extreme there are holistic physicians, and health advisors who believe that diet can even replace medication.

When the disease flares up, I would try almost anything to alleviate the pain; and it seems intuitively plausible that what we eat may affect the progress of disease. It is well-known that a poor diet can lead to other health problems, such as Diabetes or cardiac disease. But what about Arthritis? Health care specialists who believe that diet has no influence, point out that there is no clear evidence that diet makes a difference. But that could be because the subject has not been adequately researched yet. We still don’t understand what triggers arthritis, so in my view it’s too early to eliminate diet from the list of suspects.

But where can patients like myself find the information to make their own decisions?

My General Practitioner sent me to a nutritional consultation at the local University Hospital. I was amazed to learn that they even have a leaflet for people with inflammatory arthritis (published by the Swiss Society for Nutrition in German and French). There I was told that many elements of a Mediterranean diet can help reduce inflammation.

The picture shows me with my kids eating a Mediterranean diet on holiday in 2014. We were doing it years ago!

Family holidays in Sicily

The first thing is to guard against Osteoporosis. I‘ve had reduced bone density since my mid-forties, so that means making sure I get enough calcium (Fish, cheese, yogurt, various seeds – you can find information on the web) and Vitamin D (supplements and going out into the sunshine).

People affected by inflammatory arthritis need a lot of protein, which is contained in meat, fish, eggs, dairy products, beans and pulses. Some of those foods may promote inflammation, as I explain below.

If there are foods that promote inflammation, then people like me should avoid them, and eat more foods that are anti-inflammatory. That’s where the Mediterranean food comes in. As is well-known many Western diets contain high levels of Omega-6 fats, in particular arachidonic acid. These are considered to promote inflammation and are found in meat, eggs and high fat dairy products. Our Western diets contain a lot of arachidonic acid. So according to the advice I received, these should be reduced as much as possible. The anti-inflammatory „good“ foods contain Omega-3 fatty acids, like fish – so cod-liver oil really is good for you! – and certain oils. Oils that are particularly good are Linseed (we had that at home when I was a child, but it was only used to grease Cricket bats), walnut oil and rapeseed oil. To my disappointment olive oil is good, but not amongst the very best.

The last advice is to eat things containing something called Antioxidants because they scavenge „bad guys“ called oxygen radicals (who would think that something with the word oxygen in it would be bad for you?). You get your antioxidants if you eat lots of fruit and veg, and whole grain products, and nuts and seeds.

I was delighted with this advice, except it described quite well the way I eat anyway, and I‘ve still got active AS. What can I change?

I suspect that I still eat a lot of unhealthy food, even when I think that I am eating healthily. Ten years ago I visited Japan for 2 weeks.

Vegetable seller in Japan
Vegetable market in Japan
Pasta chef in Japan
Fresh pasta chef in Japan

The food was absolutely amazing, lots of weird greens and freshly made pasta. It was before my AS diagnosis, although I‘d had symptoms already for many years. I remember well how astonishingly energised and healthy I felt. I had no idea why but vowed to eat Miso soup for breakfast from then on. My promise to myself didn’t even hold a week! In the rural area in Switzerland where I live it was hard to find Miso for the soup, and my family preferred to start the day with traditional Swiss breakfasts…

Brunch bei Marlene und Sämi Wyss Rubi, Hagiboden
Traditional Swiss farmers’ breakfast

Maybe writing this blog will motivate me to try again and report in more detail in a later blog, on what I discover. The whole subject of diet is huge, and I find it quite complex.

Recently I went on a alpine trip collecting wild herbs. In the evening we prepared a wonderful 5-course meal with these plants. It was delicious, and again I felt marvellous afterwards. I’ll leave you with a picture of our starter.

Herbs from mountain meadows are delicious
Mountain meadows are a source of delicious herbs

When things don’t go according to plan – An April Fool’s Day Joke?

It’s time to come out with it! In January I broke my leg skiing. Now it’s April, and I STILL have a sort of plastic brace on my leg. I’ve barely been out of the house since the accident, except to go to the doctor’s or physiotherapy. But I’ve been to many places inside my head and – thank goodness – I’ve come back again. Life is still an adventure, even within the constraints of hoping around the house. But this is an adventure I could probably do without.

Skiing below the Eiger North Face
Below the Eiger North Face minutes before my accident

So here is the photo of me just before it happened. I’m looking at camera in my orange jacket and black helmet. To the left is the Eiger North Face. We are a group of friends planning to ski down a long descent just under that iconic mountain. We even had a wonderful local guide/teacher with us. Now, on Easter Sunday, it seems such a long time ago.

I was concentrating on practising my new improved short turns in deep snow, and didn’t notice a sort of drop to my right, someone came too close and to avoid a collusion I veered right and at the moment of falling into the drop, I couldn’t decide whether to brake and fall sideways or try to jump cleanly into it, so I fell straight into it and at that angle my touring ski bindings didn’t open.

Just the day before I’d seen Tom Cruise on the Graham Norton Show breaking his ankle and then running on. I was so impressed, but somehow something uncanny resonated with me that evening. So when a similar thing happened to me the next day, I was very aware of what was happening and knew instantly that I had broken my leg (tibia for people who know about bones), and that this was going to be a long story.

My friends helped me back to the main slope where a sort of motor bike on skis picked me up and took me to the Alpine train station called Scheidegg. I was put on a train back down to Grindelwald. During the train journey a middle-aged man, who was obviously used to telling people what to do, hit my leg with his ski stick and told me to take it off the seat. I breathed deeply and managed to remain courteous, but my explanation caused him to beat a rapid, wordless retreat to another seat. At Grindelwald the ambulance was not there as promised, so two station masters carried me to a taxi, which took me to a local doctor, who seems to earn a good living in winter x-raying people and encasing their injuries into plaster. The doctor also gave me a bottle of an opiate based pain-killer that I know from serious AS flare ups, so I chatted nonstop and cheerfully to the woman in our group who kindly drove me home. Goodness knows what I found to talk about!

At home a neighbour helped me set myself up with cushions in bed and an office chair to scoot around the kitchen. Over the next weeks my son visited regularly and helped with things like putting the rubbish out and filling the bird-feeders, neighbours shopped, and the Red Cross taxi service took me to the doctors. The ice and snow only melted in mid-March, so until very recently it was almost impossible to go out safely .

My well-being is very dependent on lots of movement and sport, and when after 10 days I was suffering from acute backache, I was terrified that a AS flare was starting. I started taking NSAIDS (Nonsteroidal anti-inflammatory drugs) regularly again, and they upset my stomach and made me feel sick. However, massage and physiotherapy managed to relieve the pain, so I could stop taking medication.

I got very lonely sometimes. Many friends visited and that saved me. But my daughter had only just moved out two weeks before and was abroad, so I was living alone for the first time in about 30 years. Morning meditation was difficult at first because of the pain, but I kept writing a journal and trying. That time in the morning is special, because it helps me to reframe negativity, create intentions and a purpose for the day, and live in the present moment. An example: on days when I saw nobody was to pose the question: “Am I lonely, or do I have the opportunity to enjoy a day of solitude?” Around me are so many people who are stressed out by the demands of their jobs and other people, and who would love a day by themselves.

One of my friends who told me that she’d never broke a bone, promptly broke her left leg skiing too. So we are thinking of forming a Facebook group. Anybody else?

Andrea and Judith broke their legs skiing
Andrea and me both broke our legs skiing in Winter 2018

Now the weather is a bit warmer and the snow has melted. I can put weight on my leg. Next week is another X-ray and if the bone has mended, I will loose the brace. Only downside is a sort of wandering Arthritis. Yesterday my right index finger and left elbow were swollen and painful. Today it’s my right knee and a bit in my right wrist. I’ve had this twice before – anybody else know it?

But otherwise life is looking up.

Do I believe that I can be healthy?

The short answer to this question is “Yes, biologicals gave me back my life”. I’m lucky that I can give that answer, but that topic is for another blog.

But many people, including myself, who suffer from chronic disease feel that their medication is not the only important thing. Tragically, for others there is still no medication that really helps. So we search for other ways to find well-being. In my last blog I named four things that help me: diet, sport, managing stress, experiencing beauty and joy.

Healthy Vegetables alexandr-podvalny-unsplash
Healthy vegetables

These are all important for happy living. But do I think that these things can make a difference to my AS? One thing is for sure, I would like to believe that I can influence my own health. I want to feel empowered and to control my disease.

Western medicine is responsible for the administration of medication. We have specialist doctors, who we hopefully trust and confide in. But, with health choices outside our medication they often can’t help us much, because they don’t know. The knowledge is simply not there, and good clinicians will not engage in unproven theories. It is understandable that a doctor who is trained in Western medicine will generally not recommend treatments, which are not scientifically proven to work. In fact, if a doctor believes that an alternative therapy is harmful, which some quack remedies undoubtably are, then she will try to stop her patient using them.

Most of us know lots of people who offer advice about “alternative treatments”, or eating differently,  which sports are best, or how to reduce stress, and so on. And there is no shortage of stuff in the internet, about people who claim to have “cured” AS. We search through the jungle of literature, different alternative treatments, perhaps finding things that really seem to help, but maybe wasting precious energy and money with things that don’t work, or even fall for a Charlatan and make ourselves worse with something harmful.

At the end of the day most of us believe that we have found some things that work for us. One friend with AS drinks a whisky every evening. That’s his tonic. My belief is that I feel worse the next day, if I drink alcohol. But, I still drink a glass of wine occasionally!

Not so healthy processed vegetables! christin-hume-unsplash
Not so healthy processed vegetables!

If there is any serious research on the subject of whether an evening whisky helps reduce AS symptoms, it would probably say it doesn’t, or at best that the evidence is inconclusive. What makes many therapies work, is that we believe in them. I think this is true of many alternative treatments, such as homeopathic pills, which contain no measurable therapeutic substances. It is belief when patients react positively after receiving placebos in clinical trials. Indeed sometimes they even know they are receiving a placebo, and still feel better.

People suffering from serious or chronic disease need hope. They don’t want to feel helpless. They need to believe that they can influence their health.

Alternative therapies, which are not scientifically based, can give this hope. They can harness the power of belief in cure or at least improvement. They don’t have to keep within the boundaries of scientific knowledge, which may make believing in recovery harder. And many people who offer these treatments, do indeed have great powers to make people feel better: about themselves in their body, mind and soul.

A treatment that harnesses both the powers of belief and of science, and gives patients hope would be the best therapy in my opinion. Until the biologicals worked I had no hope; in a state of despair I could not mobilize any healing powers. Shamans give belief and hope, and there are many documented examples of how they can work wonders. But science is not the focus of shamanic healers, and when it comes to HIV/Aids for example, anti Retroviral therapy prevents a lingering death, and nothing else reliably does.

Can medical doctors also harness the power of belief and hope, without losing the science? I believe that they can and should, but that needs a view of the patient as a whole person in a system and in her environment, and not letting the insights of technology and science reduce a patient to a sick organ. Only a person seen in their entirety will respond to hope.

Finally, medicine starts with scientific health research, so that also needs to broaden its perspective. One way in which that is happening will be the subject of my next blog.

And by the way, my TEDx Talk is also finally online. Please do watch it and pass it on to anybody who might be interested.

Thanks to Dr. Jody Staehlin for feedbacks and helping me to clarify my thoughts… and I would welcome your comments on what I’ve written, please feel free to start a conversation about these subjects close to our hearts.