Category: Autoimmune Diseases

The Covid Jab – a surprisingly emotional experience

The whole world is talking about it. Charts graph its progress. Touted as one of the greatest achievements of mankind. Yet many people reject it and seem to fear it even more than Covid-19.

The title of my blog is a bit of a give-away. Yes, this blog is about the Covid-19 vaccines, or rather my Covid-19 vaccine, which I got this morning, exactly one year after the Swiss government announced the “extraordinary situation” and put the nation into a semi-lockdown.

As soon as I learnt that where I live, people in my risk group could register for a vaccine, I did so. The delays in rolling out the vaccine had made me impatient. The current combination of increasing case numbers and political pressures in Switzerland to relax restrictions and open up the economy fill me with dread. In fact, compared with most other European countries, Switzerland has not imposed great restrictions on its people, and it was nice to be able to venture into the alps on several occasions this year. On the other hand, excess mortality has been high. I often felt that the wishes of the majority to go to restaurants carry relatively more weight in Switzerland, than the wishes of the minority not to get Covid-19.

I had to wait for one week before my vaccine, and it was long week. I knew that I should stay @home and keep safe, but the weather was so nice…. So, I went out, and then feared developing symptoms at the last minute. The day before the vaccine I felt happier than I had for a long time. On the day itself, I nearly got on the wrong train, nearly got out at the wrong station, thought that I’d forgotten some important documents, found I hadn’t, but still couldn’t find them in my bag, when I got to the hospital.

At the vaccination centre most people were elderly. The woman next to me in the waiting room was young and very nervous like me. A man in a white coat asked me for proof of eligibility. Then a woman in blue – her gloves exactly matching my blouse (see photo above) invited me to follow her. She was so kind! My nerves disappeared instantly. She said she had to ask me four questions, and held up five fingers. We laughed.

Seeing smiling people get the jab on TV I always thought that they were being rather brave. They were not. This jab was not just painless, I didn’t even feel it. However, the woman who vaccinated me said that I will feel it soon, just not today.

After waiting for a few minutes to make sure that I didn’t have an allergic reaction, I left the hospital. The young woman from the waiting room left with me. She started crying. I felt tears of relief as well.

One year of waiting and helplessness, of fear for oneself and loved ones, of sadness for the losses and pain of others. But it was also a year of amazement at all that we have learned about viruses, of frustration at politicians in denial, of anger about the inequalities that Covid-19 has revealed across and within nations. And finally a year of despairing at the ineptitude of leaders, who do not leave the playgrounds of party politics to collaborate for sustainable solutions for the common good.

And now something has changed. I have been the recipient of a vaccine against Covid-19. In one year we have a miracle for humanity, created by some of the most dedicated and brilliant people on the planet. Approved, produced, distributed and administered by the combined efforts of thousands more people. And the result is that today I could travel to a regional hospital in Switzerland to be vaccinated by the last person in this gigantic chain of genius, a kind woman wearing blue gloves.

With this vaccine, I am no longer in danger of becoming seriously ill, burdening the health system, or causing worry to my family and friends. In the light of the last year, I feel today that I am no longer part of the problem. Instead, in some sense I have become a part of the solution. In the UK and US people are already feeling more optimistic. As vaccination rates increase, Covid-19 case rates decrease. It’s not the whole solution, but surely a big part of it, and it’s nice to know that very soon, it will be unlikely that I will get Covid-19 and infect anybody else.

In a survey conducted in January this year on behalf of the Swiss Broadcasting Corporation 41% of the participants said they would be willing to get vaccinated immediately. That rate seems to be increasing, but it still isn’t enough. Even before the emergence of more infectious variants the WHO predicted that 60-70% immunity is necessary to break transmission. We need vaccine supplies for all, efficient logistics to administer them, but above all we need leaders with integrity and courage who can present the arguments to the public encouraging them to protect themselves and others by getting the jab.

Or, if such leaders are lacking, maybe get some stars to do this work instead, like Elton John and Michael Caine. Such fun to watch! Maybe the Swiss Council of ministers could ask Roger Federer, Lara Gut-Behrami and DJ Bobo?

Imagine that we have effective vaccines, but because of half-hearted take-up they don’t do the trick and contain the pandemic. Imagine that despite the availability of vaccines, case levels remain high, and new variants develop apace.

It’s time to speak up clearly in favour of vaccination, because vaccine hesitancy could destroy the window of opportunity that scientists have created for us in the last year.

Vulnerability, a word for our times

Recently I took part in a clinical trial to help establish how my medication might affect the course of a Covid-19 infection. To start I needed to give a blood sample by pricking my finger and putting a few drops into a tiny vial. After reading the instructions and laying out the equipment, I pricked my finger and held it over the vial. The fine motor skills in my hands are not good. In one hand I have a condition called CRPS (complex regional pain syndrome), which means that my hand can be stiff and clumsy. My finger was bleeding, and the blood seemed to go everywhere, except into the vial. I kept shaking and squeezing my finger, and the result was more blood smeared around and a hurting finger. In the end yours truly – the woman who has had numerous operations and unpleasant hospital treatments, loves climbing some of the most difficult peaks in Alps, injects herself every week for years, – started crying. This meant that I couldn’t see what I was doing anymore. So I gave up.

What happened? Suddenly I had felt completely overwhelmed by this situation. I want to support medical research, but I felt crushed by this small event: a hopeless and helpless person with incurable conditions, who can’t even prick her finger.

Was my reaction in some way related to the pandemic? The suffering caused by the Corona virus, including the restrictions placed on my own life, is a misery. Was my crying related to these months of restrictions, the tiredness we are all feeling and the horror at the global suffering. The Coronavirus 2019-nCoV reminds us that nature is stronger than we are. It shows us that our efforts to control life and create certainties to make us feel safe, can disappear at any moment. That is a frightening thought.

I see parallels in the threats posed by living in the pandemic and with an incurable condition. In both cases my behaviour gives me a measure of control. I can reduce the risk from Covid-19 by following the recommendations to prevent infection. Careful self-management and taking my medication will probably keep my conditions under control. But there is no certainty in either case. Despite precautions I may still contact Covid-19, and even following medical advice my treatment may stop working as it did in 2017, or I may get another illness which endangers the existing therapy, as in 2019.

Both the pandemic and a disposition to chronic illness are expressions of the power of nature. They are best met with humility and respect. Given the current efforts, in a fairly short time science will find a way to both treat and prevent Covid-19 – normal life will return, and all will be ok – at least in rich countries like Switzerland. That’s not what most people affected by chronic diseases can expect. Our situation is not transitional. There is no light at the end of the tunnel with a vaccine. We are living on a knife edge all the time.

The word that comes into my head is vulnerability and that is what this blog is about: a reflection on what I think vulnerability is for me, how chronic conditions affects my relationship to it, and whether vulnerability is a good or bad thing for me as a patient.

According to Merrian-Webster dictionary vulnerability derives from the Latin verb vulnerare, meaning “to wound”. It means openness to attack or hurt, either physically emotionally, or mentally. In Wikipedia it “refers to the inability (of a system or a unit) to withstand the effects of a hostile environment.”

Vulnerability has so many different facets. It describes a deeply personal inner feeling, but also relationships to other people. In my inner world it starts with fear and dread about something, or maybe it’s uncertainty that overwhelms me and creates feelings of powerlessness. I feel that I’m loosing control, which make me feel defenceless, and acutely aware that I need help. That can lead to a sense of shame and pain, because I can’t manage, which leads to fear and dread…. and ends in a feeling of vulnerability. I can’t really separate cause and effect, it feels more like a circle of feelings which are deeply connected.

In my situation as a patient with chronic conditions, how people relate to me can crucially affect my vulnerability. A visit to the doctor may make me feel very vulnerable. Lots of the above factors come together. I’m going to the doctor to tell her or him about how the pain has been, or because I’m feeling ill, depressed or exhausted. I’ve come because I can’t help myself and don’t know what to do. To get help I must open myself up in the most intimate way. I tell my story, sometimes I take off my clothes and stand naked in front of her or him. Sometimes I am doing this with a person that I have never met before.

What if I do not feel empathy or interest from the person? What if the news is bad? I feel fear. If the solution seems quite simple, I’ve even felt shame for making a fuss, and on the occasions when I’ve been told that there is nothing wrong with me – except in my head – I felt misunderstood and very miserable. All in all, going to the doctor is never just a “consultation”, it always means much more. Sometimes relief, sometimes new uncertainly, more loss of control and those feelings of vulnerability come again.

Chronic disease means the loss of control and loss of health by definition. It can also mean stigma and shame. Who with chronic disease has not been confronted with the attitude that loss of health is a bit self-inflicted? “If you could only find the courage to stop your medication and follow this or that (quack) treatment, you would be cured…..bla, bla..” When people give me such advice, I wonder what moves them. Are they giving me something as an expression of compassion, or are they pushing something at me to keep me at a distance, because ill-health is a threat?

Chronic illness often leads to loss of self-esteem – not just because the chronically sick haven’t managed to keep healthy, but also because we sometimes don’t look good. We are fatigued, not always able to do things we want to. Perhaps we can no longer do the job we were trained to do, or are too tired or immobile or poor to go out and socialise, which leads to isolation, loneliness and depression, and thus even greater difficulty in finding or keeping friends. All other things being equal, chronic illness increases vulnerability.

My last reflection is whether vulnerability could have an upside. Can vulnerability help me as a patient, and be a source of strength? When I was diagnosed with Spondyloarthritis I sought the company of other sufferers through my patient organisation. I was struck by the way that some people had accepted their situation and were even thankful for it, and had integrated the condition into their being, rather than suppressed it.

I think this is what they did: If you have lost something important in your life, like being healthy, then you learn that you aren’t perfect and you never will be. If you know that limits beyond your control have been imposed and that you can’t do or have everything you want (although lifestyle coaches try to teach us that we can), then it’s also easier to be grateful for what you have and for every day when you have nothing to grumble about.

Acknowledging Spondyloarthritis means that I have to recognise my imperfection and learn to accept my limits. To do that I have to give myself a break and find compassion for myself. That act of compassion opens the door to acceptance and helps me to be the person I am without covering up.

If this understanding of myself allows me to act in a way that is congruent with my beliefs and experiences, then I can connect with others without fear of what others think, or whether I will be hurt, disappointed or fail in some way. That path to connection embraces my understanding of authenticity: showing myself in my vulnerability is showing my true self, and that allows vulnerability to become beautiful and a source of strength.

In her TED talk Brené Brown tells the story of many years of research and personal discovery to understand The Power of Vulnerability. She explains how embracing vulnerability enables people to feel worthy, which in turn gives them a strong sense of love and belonging.

If we try to avoid hurt and do not allow ourselves to be vulnerable, we put an isolating shell around us. Then we cannot show ourselves as we are and loose the opportunity to connect to those feelings of inner worth, love and belonging. The dilemma explained by Brené Brown is that we can’t selectively numb the fears that vulnerability exposes, without numbing the positive qualities as well. So if we suppress our vulnerability, we also numb feelings of joy, gratitude and love at the same time and cut ourselves off from these sources of happiness.

I feel it myself and some fellow patients have told me the same thing: the vulnerability that their conditions has brought into their lives has also heightened their ability to feel joy and gratitude, to live in the moment with love and happiness in their hearts. Vulnerability – indeed a word for our times.

Easter poetry in Corona times

A couple of weeks ago I got a e-mail mail containing a chain letter in English asking me to send a poem or quote to somebody and then put my name second on the list. I NEVER answer chain letters. NEVER!

But this time I hesitated, and reflected. The request was sent to me by a woman whom I am fond of…. I love poetry and miss sharing it with friends…. I am anxious and uncertain, as we all are, and as are these times… I am questioning everything in my life, so why not question this decision?…. As time progresses, I increasing believe and hope that our lives must change after the Covid-19 pandemic…. Desired change can start with me.

Therefore, I responded to the chain letter … and was richly rewarded by lots of beautiful thoughts and poems, which I have copied to you below.

I tried to do the same thing in German, but got almost no responses. I don’t know why. Maybe it’s a cultural thing. So I’ve added a couple of things of my own, or that I found on the internet for the German pages of my blog.

By the way, last Tuesday was the Spring Full moon, when the moon appears larger, because it’s closer to earth. The picture is taken from my balcony.

John Donne Meditation XVII: Devotions upon Emergent Occasions

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

Kitty O’Meara

“And the people stayed home. And read books, and listened, and rested, and exercised, and made art, and played games, and grew gardens full of fresh food, and learned new ways of being, and were still. And listened more deeply. Some meditated, some prayed, some danced. Some met their shadows. And the people began to think differently.
“And the people healed. And, in the absence of people living in ignorant, dangerous, mindless, and heartless ways, the earth began to heal.
“And when the danger passed, and the people joined together again, they grieved their losses, and made new choices, and dreamed new images, and created new ways to live and heal the earth fully, as they had been healed.”

An African saying

Worrying does not
take away tomorrow’s
troubles, it takes away
today’s peace

Doubletake by Seamus Heaney

Human beings suffer,
they torture one another,
they get hurt and get hard.
No poem or play or song
can fully right a wrong
inflicted and endured.

The innocent in gaols
beat on their bars together.
A hunger-striker’s father
stands in the graveyard dumb.
The police widow in veils
faints at the funeral home

History says, Don’t hope
on this side of the grave.
But then, once in a lifetime
the longed for tidal wave
of justice can rise up,
and hope and history rhyme.

So hope for a great sea-change
on the far side of revenge.
Believe that a further shore
is reachable from here.
Believe in miracles
and cures and healing wells.

Call the miracle self-healing:
The utter self-revealing
double-take of feeling.
if there’s fire on the mountain
or lightning and storm
and a god speaks from the sky.

That means someone is hearing
the outcry and the birth-cry
of new life at its term. 

Unknown

History will remember when the world stopped And flights stayed on the ground And cars parked in the street And trains didn’t run

History will remember when schools closed And children stayed indoors And medical staff walked towards the fire And they didn’t run

History will remember when people sang
On their balconies, in isolation
But so very much together
In courage and song

History will remember when the people fought For their old and their weak Protected the vulnerable By doing nothing at all

History will remember when the virus left And houses opened And the people came out And hugged and kissed And started again

Kinder than before

Ask for it – unknown

Ask for healing, clarity, peace, wisdom,
and guidance. Ask for abundance,
creativity, light and love. Don’t be timid
in your prayers or your request. Be
bold. Be positive. Be grateful as
everything you’re asking for is already
making its way to you

John Milton Paradise Lost, Book II

This horror will grow mild, this darkness light:⁠
Besides what hope the never ending flight
Of future days may bring, what chance, what change
Worth waiting, since our present lot appears
For happy though but ill, for ill not worst;
If we procure not to ourselves more woe.”

‘It Only Hurts For A Little While’ from CD ‘Croonin’ with Anne Murray

It’s so easy to be smart with somebody else’s heart!

Leisure, William Henry Davies

What is this life if, full of care,
We have no time to stand and stare.

No time to stand beneath the boughs
And stare as long as sheep or cows.

No time to see, when woods we pass,
Where squirrels hide their nuts in grass.

No time to see, in broad daylight,
Streams full of stars, like skies at night.

No time to turn at Beauty’s glance,
And watch her feet, how they can dance.

No time to wait till her mouth can
Enrich that smile her eyes began.

A poor life this if, full of care,
We have no time to stand and stare.

Coronavirus: 5 tips to manage your day

The news gets grimmer every day. Many of us are living in Lockdown. We are frightened and understandably so. The Coronavirus disease is causing a pandemic which is shaking our beliefs, culture, daily habits and the very essence of our lives. These are life changing events for us all. Whatever this leads to, whatever we suffer, or learn, I suspect life will never quite be the same again.

Will I fall into a chasm of fear, helplessness and despair? I’ve been there, and that taught me that we have choices and it’s never as bad as our fantasy and creative mind can allow it to be. Rather use that creativity to generate hope and optimism, and on a strictly practical level – make a plan to keep myself afloat.

5 things to manage Corona times

What follows is my list of things to do every day. If I keep to them, I will be OK. It helped me to visualise the plan. My artistic efforts are pictured above!

Maybe a plan like this might be helpful to you? Other ideas are around. For instance, the Unicef Executive Director, Henrietta H. Fore has been broadcasting a Video diary from her home office. In the broadcast on Day 4, she recommends to make a Well-being plan.
(If it’s relevant to you, Unicef’s advice about looking after children and teens during the pandemic might also be worth reading.)

So here is my personal list of what I need everyday for well-being.

1. Move your body!

Movement and sport is absolutely essential to me. It’s the way to keep Spondyloarthritis at bay. If I move, I’m usually pain free. If I don’t, the pain comes back within a few days. So how to replace the weekend mountain trips, the back classes, training gym, climbing gym, physiotherapy and the fitness centre which keep me moving?

As long as I’m allowed to, I will go running in the hills behind my house early in the morning. I meet nobody and feel safe. Or some days, I practice Rickie Moore’s wonderful yoga for inner peace, which takes an hour. I can also go walking. The incredible value of walking was made clear to me by the neurologist Prof. Shane O’Mara on a BBC podcast called Don’t tell me the score. In summary, walking benefits our muscles and posture, helps to protect and repair organs, aids digestion and can even turn back the aging of our brains. Moreover, it encourages us to think more creatively, helps our mood to improve and our stress levels to fall. I’ve tried to follow Prof. O’Mara’s recommendations on walking, and I really think that they work. A quick summary with 8 reasons why walking is so good for you is here.

2. Look after stress levels by meditating

Sometimes I get really stressed out, which leads me to make mistakes and misjudge situations. I can even feel my heartbeat accelerating, or my voice getting tense. To relax again, I need to get myself into the here and now. I’m never tense if I’m in the present moment. It’s reflecting on some event in the past, or worrying about the future that makes me stressed.

Climbing, running, swimming, or other physical activities all help to concentrate the mind, but meditation has a special healing quality. Sometimes I can sit on my cushion and physically feel the tension falling away from my body. There are so many schools and techniques to meditate. If you are curious, it’s all on the internet.

Mindfulness is also a very helpful tool to reduce stress. It’s not the same as meditation. I like this simple way of distinguishing these two practices:

Mindfulness is the awareness of “some-thing,” while meditation is the awareness of “no-thing.” (here’s the reference)

Mindfulness is being aware of the present moment. It’s noticing and paying attention to thoughts, feelings, behavior, and everything else, but without making judgements. Jon Kabat-Zinn founded the Mindfulness-Based Stress Reduction (MBSR) program at the University of Massachusetts to treat the chronically ill.

Personally, I prefer meditation. It’s the fascination of trying to get to a completely different level of consciousness. Albert Einstein famously said, “We cannot solve our problems with the same thinking we used when we created them.” Meditation often enables me to reframe problems and find solutions.

There are masses of information on the internet. I find Andy Puddicombe a fascinating person. He co-founded the App called Headspace. I don’t know it, although it’s probably the most popular one. He has worked hard to make Meditation and Mindfulness more accessible and relevant in today’s world.

I’ve been meditating for about 8 years now. Sometimes only for 10 minutes, but every day is the key. I still get distracted a lot, and this is quite normal, unless you are really, really experienced. My practice has not (yet) enabled me to switch into altered consciousness every time I sit on my cushion. My practice is learning to catch myself drifting off into other thoughts and bring myself back to quietness. This does help with problem-solving and calms my mind too. I also enjoy meditations that help develop a certain state of mind, such as Loving Kindness, or Compassion. There is no wrong and right way to meditate!

3. Get some overdue work done

Lots of people feel this way about the Lockdown. They can finally get some work done, which they’ve wanted to do for ages, or read some of those books stacked on the bedside table…. I am looking forward to blogging more and am launching new professional activities as a patient representative/advocate in medical research. Maybe you have other projects, or can contact old friends again.

4. NO TV before bedtime!

We all know that we shouldn’t be online in the evening, let alone watching the news. A few evenings ago there was an evening report from an intensive care unit in Bergamo in Italy, a city 30km from the Swiss border, where an old friend lives, who had a liver transplant. I was stupid enough to watch it – woke at 3am, feeling sick, my head spinning. I felt feverish but was too dizzy to move. When I did manage to measure my temperature, I had slightly over 35C! No fever whatsoever!

In the evenings I am generally to tired to read, so I need to do something very passive. That’s why TV is such a temptation. My solution was to get out some of those old coffee table books with stunning photos about beautiful places in the world and look at them again. Wonderful! I haven’t looked at such books for years!

5. Remember the power of Love and Compassion

It’s important to me to feel connected with others and to feel the power of Love and Compassion. A marvellous doctor called Sir Harry Burns, who I have been so privileged to work with, emphasised the need for Love and Compassion in health care in a recent talk. He was referring to the care of others, but it’s also important when caring for ourselves. (Sir Harry has also done a great TED talk on What causes Wellness).

I’ve heard that Neuroscience says that it is better for your health and well-being to give than to receive. I don’t know if there is really any evidence-based research on this, but I can believe it. Helping each other, staying in touch, supporting each other, will make a big difference to how we overcome this crisis. And I am sure that despite a bit of hamster shopping, people will rise to the occasion. Just knowing this, gives me strength and hope for the days and weeks to come.

Take care, stay at home, stay healthy, and stay in the space of Love and Compassion.

Another Patient Journey: 2019 was a good year

Picking up the story from my last blog Was 2019 really that bad? my doctors advised that I should stop the TNF blocker drugs, that had enabled me to live a normal life for the past three years, before undergoing cancer surgery. That made sense. These drugs work by dampening the immune system. I could understand that my immune system should be as strong as possible for the operation, so I would have to go off them…. for a while.

However, after the operation I was told that I wasn’t supposed to stop the TNF blockers just for the operation. I was supposed to stop them forever, or at least for a few years, because TNF blockers might enable the cancer to come back. TNF = Tumour Necrosis Factor – the blockers stop these messengers in the immune system, which are thought to play a role in suppressing cancer.

My doctors all seemed to be saying “stop TNF blockers”. I couldn’t believe it. I read the patient information for my medication, and it said the same thing: Do not take this medication if you have been diagnosed with cancer.

I was absolutely devasted.

Until I spoke to one doctor, by whom I felt understood, and who said, “What do you want? What is Quality of Life for you?” I thought of my trips to the mountains, of laughing with family and friends and all the love of life that had come back to me with TNF blockers. After the trauma of diagnosis and the surgery, I felt so confused and helpless. I needed that input to start thinking for myself.

I posted a question on the Facebook AS patients’ page of which I am a member. One woman commented that she was in cancer treatment and had to change medication. She wrote, “I got my life back with humira [brand name of a TNF blocker drug] and now it’s the 💩💩💩.”

Then I looked for relevant research results, my oncologist sent me a paper, I opened the discussion with different experts, and discovered …that there was no relevant, reliable data to guide my decision. The risk of cancer caused by TNF blockers in my situation is theoretical, because it would not be admissible to run clinical trials with patients to find out. There is also no scientific literature showing that I will reduce the risk by stopping TNF blockers now.

Living with chronic disease is life on a knife-edge

With my condition I live on a knife-edge, and I want to stay on it, living a normal life. This is me, on a mountain called the Lyskamm. It’s a knife-edge ridge, about 5 km long, and the idea is to stay on it, to walk right over it. I walked over it on my mountain tour of August 2017. I tell that story in my TED talk or my blog 16 x 4,000m summits in 5 days.

Traverse of Lyskamm, 16 4,000m peaks in 5 days
Me standing on the knife edge of the Lyskamm on the border of Switzerland and Italy

When you stand on that ridge on the right is Italy, and a drop of 1000 m. On the left is Switzerland, and a drop of 1000 m.

Italy is happy go lucky, living for the now. “La Dolce Vita”. For me it stands for continuing TNF blockers. But maybe I will fall to my death, because taking the drugs might allow the cancer to come back!

Switzerland is the sensible place to be. If in doubt, choose the conservative option, wait and see. It stands for stopping TNF blockers. But maybe I will fall to my death because if I stop taking the drugs, the autoinflammatory conditions will probably flare up again! I had experienced this a year before, when the medication stopped working, see The Luxury of Despair. Furthermore, it is known that chronic inflammation increases cancer risk, as does a lack of regular exercise.

How would you choose? ……Which way would you lean on that ridge?

“What is Quality of Life for you?”

The words of that doctor were my guiding light. She saw my integral, holistic needs beyond the inflexible, “one size fits all” recommendations of a health system that generally places mortality and prolonging life above quality. In Switzerland I can choose my doctors and over the years I have sought out dedicated carers who are attentive to my experiences and needs and do everything in their power to help me.

I want doctors to give me the facts, listen to me, guide me, but recognise that this is my patient journey.

I could explain my perspective to my doctors and win their understanding, respect and agreement. I decided to continue TNF blockers and live as healthy and strong a life as I can, even if my decision might be increasing the risk of cancer. Life feels good right now, and that’s all I need.