This blog is to share experiences and information with those suffering from chronic diseases, auto immune disease, for the best possible happy and healthy life. who have spent time and energy to become their own healer. And this is a thank you for our life partners, co workers, friends and family.
Because my sarcoidosis might be back on.
Maybe it has been triggered by a year of stealthy hormonal difficiencies. Or also known as the menopauze. Here I ignored the hotflashes, the restless leggs and sleepless nights.
Perhaps it got triggered by a year of working at my dream job. A job that I simply love. Working with the best people I've yet worked with. However, in circumstances that are hard on the more more physically sensistive. Here I ignored that I was becoming very tired and quite distracted. 'You do have ADHD, don't you?' was being asked more often.
Of course I didn't want to think that I could be sick again. After ten years of healthy energetic complete remission I had started believing I kicked the auto immune disease. I was lóving my life. Every fun, intens and interesting minute of it. I didn't wánt to say no to long shifts, weekly late days followed early mornings. I couldn't say not to the continuous and often heartwrenching needs of our 'boys'. I was rightfully so labeled as 'the softie, and they know it about you.' Nor would I say no to a good festival in camper with lovely dogs and sweet friends.
I love every minute of it.
But an additional new set of symptoms wouldn't be ignored. I am now sick and not working, for the third time in twenty years.
Suddenly I am reacting to pollen. I don't sneeze. So it took me a couple of weeks to understand what might be causing the high fevers, weightloss, pain in lungs and troubled breathing. And I am very much hoping that it will be only allergies and hormones.
So now I am back to my sarcoidosis specialist in the center for ILD diseases. He thinks I may have simply developed asthma. So now first come all the tests to visualize and prove the invisible. All three conditions, sarcoidosis, menopauze and allergies are cascadial, if that is an exisiting word. Many possible triggers, each triggering a new trigger, creating new symptoms.
I am now finally forced to rest. I am relearning eating a diet of only healthy, organic and vegetarian whole foods. Or my body rejects food alltogether. My house is cleaner than it has ever been, or I itch and become feverish.
The early onset of a new active period of any disease is especially hard. Many unknowns and quite a bit of frights. This time is hard for all. My work has to adjust, with not only financial consquenses. They also have to just wait and see what will be the new normal, and for how long. It's hard on my loved ones. In my search for health, I definitely don't only make smart desicions. And I am stubborn, learning only my own lessons, and sometimes through making mistakes. All they can do, is stand by and cheer and curse me onward.
And last but not least, this is obviously not easy for me. For when the feverstorms now come, I sometimes lose courage and become very afraid. I am sarting to arrange unpleasant things like a will and such boring but necessary things. I miss my work very much and I fear of losing it, of not healing fast enough. I worry about dissappointing my loved ones, especially about not being fun to be around anymore.
Because as all good patients and great healers realize, we must be our own best doctor and are our own worst patient. The best healers have been here. In the dark without a known cure, a rational scientifically sound set of proof. With a dish of medicines that sometimes cannot be avoided if you want to live and work, but they may hurt your Homeostatis. The natural ability of your body to restore your healthy balance and cure the diseases that run through it.
In Western medicine we count up to 150.000 diseases. In the amazon the curaderos (here often called Shaman, but théy oftentimes call themselves Healer) say there is only one disease; This one happens when your are no longer in right relationship (Ayni) with yourself, your body, mind and soul, your loved ones, your village and the world.
So I am now learning about how to deal with my new challenges, whilst living the most regular life. I would normally find this boring. But there is actually nothing boring about having a good day.
The only ones this is actually not hard for, are our dogs. They finally have me around áll the time. I rest and learn in my wooden house in the forest.
A deep thank you to all who care about me. You know who you are.
Also, I feel a deep respect to all of those working to learn about how to restore a healthy balance in a complex often unhealthy world, for others and themselves.
I am healing so that I can go back to being a healer, ASAP. But also not too soon. Not before some balance is restored. Some weight is back on my bony ass and the worst risks are known and contained.
Let's all keep sharing our wisdom and restore the balance, for ourselves and our village and the world 🧡.
The following resources are for all nerds like myself. They who like to research, test and tweak their health in the most healthy and natural ways.
A big shout out to the following people and institutions. They have been my teachers on this rocky journey to regain health in this life. :
- @Huberman Labs for the psyhiological sigh and get that early morning light to set your circadian rythm and improve your sleep.
- My dear friend @srethans for her unconditional love and a shout out to her extensive knowledge about non toxic bioidentical Hormone Replacement Therapy (HRT) and her pointers to trustworthy wise knowledgeable and completely scientific sources like @the Dr Louise Newson Podcast and the Dutch facebooksupportgroup
- @Koen de Jong for his clearminded blogs @sportrusten about cold exposure, whoering and mindfullness
- @Tolle for helping me accept that which is in the the Power of Now and his surprisingly funny podcasts @Eckhart Tolle: essential teachings
- @Bernardo Kastrup and the Essential Foundation for the sometimes forgotton but oh so necessary existential perspective and encouragment with
- @microdosing.nl for natural remedies and support for trauma release
- @jan geurtz for teaching about Dzogcheng, a form a meditation that did finally make s sense to me and helped me calm my busy mind and accept and feel the tougher emotions and for his soothing mantra from 'Verslaafd aan Liefde': "It's okay, it doesn't matter. This too shall pass.
- My sarcoidosis specialist and rock, Dr. Grutters at the ILD and Sarcoidosis Centre. He is been a never changing, calm and soothingly non judgmental scientifically based presence for a pretty stubborn patient. One, who comes back time and again with all kinds of articles that proof the dangers of prednisone, the relationship of menopauze and sarcoidosis, of the use of Ketamine for pain relieve for sarcoidosis patients and even the dangers of quitting smoking. Where he calmly replied: "That might be, however the consequenses of smoking entail an even bigger risk than that of sarcoidosis."
- @Amy Cuddy for her free, no tech life hack: The Wonder Woman Pose - Your body language may shape who you are. A nice way to top off a good cry.