We Woof You A Merry Little Christmas

Dear all,

We wish you a wonderful Christmas time. May the warmth, togetherness, love and joy of Christmas be with you throughout this time and the New Year. 

Enjoy the heartfelt wishes, calmness and excitement. Believe in wonders, love and peace. 

Warmest wishes also from my mum, Bo, Emmy and Einstein,

Evita

Thank you for your encouragement. Thank you for the people that fight with me and support me. Thank you for the ones that haven’t left me. The pain of being unable to help and witnessing someone that suffers so much can be stronger than the physical pain itself. And so is the pain that arises from the acceptance of my suffering and the realisation of who truly supports me/us. I am very grateful for those that haven’t given up on me.

Thank you for your kind and lovely messages. Lots of love to you.

I hope to update soon, spread some further awareness and some medical knowledge soon again.

If you are interested, a short medical update regarding the past months is attached in the end.

Although I am not religious, a few thoughts about Christmas (commercialisation of Christmas aside). During this time people become more aware, people become more emotional. We might think of, help or pray for those that suffer, are heavy-hearted or discouraged. Whether we are religious or not, Christmas provides us with a spirit of hope, love and peace. Everything seems so much more intense during Christmas, doesn’t it? Lightings, gifts, cookies, scents, festive gatherings, … our feelings. And to those that experience more suffering, loneliness or sadness, I hope to encourage with following words.

How can we celebrate in the midst of war, crises, illness and suffering? How can we be jolly when we are alone, missing a loved one, are in pain or witness our loved ones in pain, grief or sadness?

Christmas helps us during the process of reflection, acknowledgment, change or adjustment and encouragement. Things are different than last year, but I am grateful for the little things left and I am grateful to make the choices my life offers.

But it’s important to be happy about the little you have. However little it is, it’s infinitely more than nothing. (maths aside…)

Jostein Gaarder, The Christmas Mystery

I don’t ignore other’s or my suffering, I cherish life. Incomprehensible life. I cherish other’s joy. I cherish my joy. Christmas is a time of gratitude. I cherish the little things.

Christmas reminds us about the importance of believing and hope. The incomprehensibility, unpredictability and uncertainty of life can be cruel at times. Sometimes, strength, effort, knowledge and endurance is not sufficient and we need some equally unexplainable and immeasurable feelings as companions and guides. 

Christmas is the season of wonders. Suffering or illness and miracles aren’t inconsistent. In the end, suffering might be a miracle itself. What defines a miracle? It is our perception from the perspective of the state in which we live dependent on our expectations.

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

Albert Einstein 

Every moment we can change our perspective, our expectations; which then has a direct effect on us. Just like Einstein taught us a completely new perspective on space and time where spacetime creates curvature effecting matter moving around which itself affects spacetime. There is beauty in everything, we just have to look clearly and brightly. During our life we have to learn to appreciate every single thing and practise gratitude. And at some point everyone does. I prefer the second option.

Christmas simplifies forgiveness. When I am honest, there is anger towards those that have endangered my life several times, complexified it a lot, created and accelerated my illnesses. Life seems unfair and cruel. But anger consumes my body and my mind. So does grief, sadness or other negative feelings. Ring out the old. With the New Year ahead Christmas clarifies the need for forgiveness, with that comes peace, acceptance and rehabilitation. Forgive others and forgive yourself. Leave that weight behind and joy will flourish. I think forgiveness can be a wonderful gift.

Christmas, the time of togetherness and reunions, friends and family. It reminds us of the (inter)connectedness of everything. We are dependent on each other, we can grow relationships. This is a gift and a major responsibility. I am grateful for my mum’s loving, caring, selfless and kind-hearted support. I am grateful for all the wonderful memories I could collect in the past years. And I am grateful for each moment spent and each experience shared with her. We protect each other like the trees where in the midst of them there is no icy wind. There is shelter if we allow it. We don’t need to be merry or joyful (I am not a scrooge), but think of each other, help those that struggle (not only during this time of the year), try to understand (each other) and comfort each other. From a patient’s perspective who suffers from daily pain with no or little relief, I can say that as much as I long for days with less pain I also wish for more understanding and simple comfort.

Finally, Christmas is the most magical time of the year. Children send their letters to Christkind, Father Christmas, Santa Claus and wait for the little bell’s ringing. Fond traditions, warm insides, lovely decorated and cozy rooms. People don’t get upset about the snow chaos. Pine tree, gingerbread and orange scent everywhere. What was that, flying above us through the starry night sky?

‘Über den Wolken’ – a song I received in one of my birthday wishes today, when the sun was shining beautifully and warmed up my face. Watching the clouds like paintings in the sky, wouldn’t it be wonderful to watch the Earth from highest highs, through the clouds that blur all suffering. 

Über den Wolken, muss wohl die Freiheit wohl grenzenlos sein, alle Ängste und Sorgen, sagt man, blieben darunter verborgen und dann, würde was uns gross und wichtig erscheint, plötzlich nichtig und klein.

Above the clouds / There may be no boundaries for freedom / They say that all fears and sorrows / Are hidden underneath / And then / Everything that appears big and important to us / Suddenly would get minor and small

With its magic, Christmas dwindles our worries and fears. It takes us somewhere else, to Winter wonderland, Narnia or early childhood memories. It takes us to places where we can float freely not attached to anything. Just like this song awakens people’s longing for liberty, Christmas has its very special effect on everyone. 

Following the Bible, just like men and women waited for Christ to arrive, born in very humble circumstances and to change the world, we long for a Christmas phenomenon, we long for the strange star at the velvet sky to guide us. A new born year, a new hope, a new beginning.

Christmas reminds us what inner attachments we have, the prison we have built in and around us. And with the New Year waiting around the corner, it gives us a major resolution, doesn’t it?

Where roads are layed I lose my way.
In the wide water, in the blue sky, there is no sign of a track.
The pathway is hidden by the birds’ wings, by the star-fires, by the flowers of the wayfaring seasons.
And I ask my heart if its blood carries the wisdom of the unseen way…

R. Tagore

If you are interested:*

I am not doing well. My main problem still is the intestinal dysmotility/atony with recurrent long/chronic (sub)ileus states. Unfortunately, we have basically exhausted all treatment options with very little or no effect. I know that my case is very complex and it is impossible for you to understand or follow what I am/we are going through (if you want to look it up, the major illness I suffer from is an ‘autonomic neuropathy with a severe form of gastrointestinal pseudo-obstruction and enteric neuropathy’ aka ‘Cipo’ due to a ‘myenteric hypo/aganglionosis and other enteric nervous system damages’ as well as nerve damages from the first surgery and the many necessary surgeries following this one plus mechanical issues from the adhesions…resulting in many life-limiting and life-threatening conditions e.g. other organ failures, osteoporosis, orthostatic intolerance, pancytopenia, SFN, vascular and metabolic issues, cachexia…), but in summary my illness has further progressed, my quality of life has further decreased and there is no perspective. Every day we live in uncertainty, worries and suffering.

The few hours without much pain, nausea, vomiting, weakness, fainting…the few hours not spent in clinics or curled up, connected to infusions or applying injections or decompressing… the few hours not waiting for further bad news…I try to make it through the day. To be honest, I don’t know what to say in the midst of the chaos, lack of perspective and misery and often I don’t have the strength to picture what it is truly like. Hence, also the lack of updates.

Every day is a surprise whether it will be spent calling the ambulance, having invasive or non-invasive procedures, having nausea and vomiting non-stop, being able to walk a bit outside or not even reaching the bathroom for catheterisation and ostomy enemas, fainting from every time I stand up, being able to bake for others or curled up in major pain that isn’t even touched by high-dose of morphine injections, having another major ileus (paralytic, mechanical? needing decompression? surgery?) or another emergency (stent occluded? patches dissected? ischemic infarct?), having issues with my hickman catheter which I am dependent on for meds, TPN, infusions etc…we cannot even plan an hour ahead since we always have to follow what my body does.

Nonetheless, I remain hopeful and believe in some kind of improvement = stabilisation one day.

Hold fast to dreams,

For if dreams die

Life is a broken-winged bird,

That cannot fly.

– Langston Hughes

*Short medical update for those who are interested:**

• November 2021: palliative care ward for pain management and Cipo management
• December 2021: mechanical ileus, twisted small intestine loops and co – major open surgery, transfer to the university clinic, major paralytic ileus for many weeks, decompressions, high dose meds
• January 2022: paralytic ileus state, slow improvement to severe Cipo again, 1st major discussions regarding the intestinal transplant
• February, March: palliative ward, university clinic, Cipo and pain management,…progression of bladder involvement (neurogenic bladder dysfunction), catheterisation
• April: gallbladder colics, cholelithiasis (stones), inflammations, pancreatitis,… ERCP etc, Cipo ileus states in between, liver issues
• May: decompression, colitis, gallbladder and inflammation problems, ileus states
• June: same
• July: open gallbladder removal, adhesiolysis, Cipo management, pain management
• August, September, October: Cipo progression (stomach, small and large intestine), severe (sub)ileus states, pancytopenia progressed (severe anaemia, very low thrombocytes, leucocytes), infusions,…exhausted all treatments for Cipo (except possible Ivig therapy), exhausted all treatments for pain management (except possible pain pump), decompression, not even drinking in sips possible anymore…
• November: same, in and out of hospital, pain pump planning, confirmation and start of Ivig therapy, major side effects
• December: same, Cipo progression, pancytopenia, pain, second Ivig infusions planned, diagnosed with SFN (small fiber neuropathy) – treatment options?
• January 2023: pain pump trial planned, likely not possible due to cachexia
• 2023: intestinal resection, tube for drainage, intestinal transplant further steps, Cipo/ intestinal failure management?, pancytopenia treatment?, liver deterioration?
• And what else is waiting around the corner?

Sun is shining and I feel

Like my bodies on the breeze

And I’m floating on a dream

**little dictionary with links to detailed explanations

CIPO: chronic intestinal pseudo-obstruction, a very severe motility disorder, either due to neuropathy or myopathy (see here, here, here and here)

(sub)ileus states: states where the intestines don’t move at all, either paralytic (no mechanical issue) or mechanical; the second needs surgery, the first is very difficult to treat

Enteric neuropathy: nerves of the ENS (enteric nervous system i.e. inside the intestines) don’t work properly

Myenteric hypoganglionosis: nerves inside the myenteric plexus (which is important for the motility) have died or are very low in number

Aganglionosis: no nerve cells at all

Autonomic neuropathy: the autonomic nervous system doesn’t work properly causing GI issues, orthostatic intolerance, vasomotor issues, bladder dysfunction, etc

Orthostatic intolerance: dizziness/fainting and further problems when standing up or being upright due to low blood pressure (hypotony), blood pressure drop (orthostatic hypotony), POTS (increase in heart rate when standing up)

Cachexia: loss of body weight and muscle mass, often due to illness, causing other major issues such as osteoporosis

Osteoporosis: weak bones due to a lack of calcium causing a higher risk for fractures 

Intestinal failure: failure to thrive due to intestinal issues such as short bowel syndrome, severe dysmotility, inflammations and other illnesses, dependent on TPN; when TPN isn’t possible anymore due to vascular access or other organ failure need for intestinal transplant

Pancytopenia: lack of leukocytes (white blood cells), anemia (lack of red blood cells), thrombocytes (platelets) 

Ivig infusions: Iv Immunoglobulin infusions, immunosuppressive treatment in some illnesses (infections, weak immune system, antibody deficiency, some autoimmune/autonomic neuropathy or other neuromuscular diseases…)

Small Fiber Neuropathy (SFN): disorder of the small myelinated or unmyelinated nerve fibers often in diabetes patients, but also in other due to other conditions like autonomic neuropathies, causing pain in hands and feet, but can also progress to other parts and cause further symptoms

Intestinal transplant

Neurogenic bladder dysfunction: urinary bladder problems due to either internal or external nerve damage causing overactive bladder, frequent urination, incontinence or difficulty passing urine (e.g. I have to catheterise each time) causing other issues as UTIs

Cholelithiasis: having gallstones, which results in inflammations (e.g. Cholangitis, inflammation of the bile ducts), liver or pancreas issues when they cause a blockage as well as pain, nausea, malabsorption jaundice etc

… to be continued