Happy diagnosiversary – lucky number 7

Seven has always been my lucky number ( plus 17 as I’m born on July 17 😉 )  and this is exactly how I feel today, on my 7th MS diagnosis anniversary.

Lucky. Blessed. Grateful.

Then again…believe the diagnosis and NOT the prognosis 🙂

My world as I knew it  collapsed when I heard “you have MS” on June 25 2012. That summer I had a very aggressive MS relapse and the number of active lesions in my brain/ spine went from 8 to “we didn’t bother counting them” within 6 short weeks. The prognosis didn’t look good, initial EDSS was 3.5, my entire body was numb, I couldn’t feel the difference between hot and cold water, my right arm and hand were so weak it was impossible to hold anything. But that was all nothing compared to the fatigue I experienced.

I’m so so grateful for my “health” each and every day. Not even in my wildest dreams could I have imagined that things would turn around from where I’ve been 7 years ago – to be able to experience all those moments in the past 12 ( 24) months.

As you’ve most likely noticed I don’t really blog anymore these days and only use my Stumbling Princess Instagram account but as this is another important milestone I felt it definitely deserves a good old blog post.

Let me quickly recap what happened in the past 12 months – I couldn’t stop smiling ( or let’s say laughing ) when I selected the following pics to document what I’ve been up to this past year as no one would have ever thought I could do these things again considering my initial diagnosis – or even enjoy doing them.

You gotta love life, you can’t make this stuff up, lol.

3 – 2 – 1 – Here we go, wohoo!

Juli 2018- September 2018

Thank you Courtney, trainers and fellow workout buddies at F45 Frederiksplein, F45 truly is “team training , life changing” and I love being part of this community. Can you imagine they dedicated their first anniversary to me and MS research? The F45 community collected donations for Mission Summit to support Project Y at Amsterdam UMC not only on the big day itself – but all week long! Thank you again to everyone who donated to this cause that is so close to my heart ❤

My first F45 Challenge! I lost 7.7kg ( see, 7 is my number) , 10% body fat, gained muscle, got super fit and a nice little six pack. I started to workout almost daily and noticed the more and harder I work out, the better I feel. If I live like an athlete in terms of training, nutrition and lifestyle I hardly have any MS symptoms.

I also (kick) boxed a lot during these months and took my first hot power yoga class, something I never tried as the typical MS health “recommendations” say heat and MS don’t mix well. Glad I went to this class as it was the beginning of a new adventure.

I even won the second place of the F45 Challenge and got 3 months membership for free – so went back for more and signed up for yet another 8 week challenge.

September 2018

Since 2012 September means one thing to me: MRI.

No matter how often I’ve been there, it’ll always be a bit nerve wracking as I usually have to wait a week for the results. That’s actually also the only time of the year I see my neurologist at the VUmc MS Center – he shares the results and usually can’t wait to hear what ( unusual) things I’ve been up to the past 12 months.

It was yet another stable MRI! My neurologist agreed to not use any contrast fluid ( very bad for you ) this year and even better – he told me if my upcoming MRI is clean again, I won’t need to come for yearly MRI’s anymore but only every other year! So fingers crossed for September 16 please, I’m busy manifesting yet another perfect MRI 🙂

After the MRI/ waiting game we went straight to Italy for a week of hiking around the beautiful Lake Lugano and I must have been on every surrounding peak as I couldn’t get enough of the mountains and unspoilt views.

October – December 2018

I’ve finished my second F45 Challenge and officially arrived in the muscle/ fat “athlete” category! What an interesting experience to see your body transform in ways you thought weren’t possible, especially in such a short time and considering all those “labels” like MS and age. I get so much energy from my workouts that I never have to push myself to exercise – I always love to train and am so grateful that I can as I remember the times I couldn’t even cycle for more than 2 mins at the physio’s practice before my body started to strike.

Yoga became more and more part of my schedule which at first was very confusing to me as, until then, I never really enjoyed it and used to be quite bored…but then I tried hot power yoga and I had no choice but to surrender to the heat and yoga.

January- February 2019

Another long “healing through adventure” trip!

This time we traveled around Vietnam and Laos, tried to not get hit by scooters in Hanoi’s crazy traffic, did some ( foggy & muddy) trekking in Sapa, enjoyed incredible sunsets in Luang Prabang, cycled along  Trang An river in the picturesque Ninh Binh area.

My highlight was the 3 day Tiger Cave Adventure in Phong Nha-Ke Bang National Park, home to the largest caves in the world. Not only did I experience how dense a jungle really is and how hungry leeches are – we also hiked, climbed and swam through several caves. By doing so I also traumatised myself a little during one incident when I was all of a sudden fully aware that I’m in the middle of nowhere, deep inside the earth, the next road is a full day jungle hike away and I’m abseiling on a wet, slippery rock inside a cave so huge no torch light can make it all the way to the bottom. Yep, that was definitely my scariest moment in the past 12 months.

But for the rest I felt like my funny self during this trip 😉

March – May 2019

I couldn’t help but giving in to the wish to deepen my own yoga practice so I signed up for a 200h Vinyasa Yoga Teacher Training at Equal Yoga, the studio that made me fall in love with ( hot power) yoga.

I’m so grateful I got to learn so much about yoga, the philosophy, the asanas, ayurveda – but most of all for how that experience – and yoga magic – made me “feel”.

My YTT family – thank you for accepting me as I am, I really felt “equal” at Equal Yoga and not like the “oldest student with MS”. I’m so grateful for my teachers and new friendships with fellow students. Turns out I can open up and “feel” again as I was the one crying ( not out of sadness but joy and pure awe) during our very first meditation on day one and also “closed the circle” after our final savashana together as I made everyone cry.

All of this just happened a little over a month ago and I’m still in the phase of letting it all sink in but I’d love to follow further workshops and trainings in the next year(s), especially everything yoga therapy/ healing and breathwork related.

That was my yearly review in a nutshell. 7 years, wow.

As every single day in the past 12 months I woke up feeling very grateful for what I have and especially for the love and support I receive. Thank you to my “inner circle” aka my parents, Mr. X, Ruby, besties and close friends but also to all those beautiful, inspiring people I’ve met the past months.

I’m really excited what the future holds, bring on the next 12 months 🙂

xoxo from Amsterdam, Anja

Anniversary! 6 years – where is my cake?

June 25, 2012 – June 25, 2018

Happy 6th multiple sclerosis diagnosis anniversary to me!

The sixth year living with MS ( after diagnosis that is, I have it waaaay longer) was the BEST one yet – I attempted to climb the highest mountain in Italy, Gran Paradiso ( 4,061 m / 13,326 ft ) the highest mountain in the Alps, Mont Blanc ( 4,810 m / 15,774 ft )  and hiked the classic 4 day Inca Trail and its infamous  “Dead Woman’s Pass” ( 4,215 m / 13,828 ft )  all within 9 months.

Only one year ago I didn’t even know how much I love hiking, the great outdoors and -CAMPING of all things.

I got to be part of the Mission Summit team and in addition to other fundraisers and previous events we finally received enough donations ( Thank you to everyone who contributed! ) to get the VUmc MS Research team started with the study “Project Y” that will hopefully find out why some MS patients progress faster than others and what the triggers are.

I had the honour to be part of a great MS campaign, write several articles and finally met some of my fellow MS bloggers in real life , told my MS story in a video and interviews for the MS App CLEO and to many people and professionals  throughout Europe.

Without MS none of these challenging, adventurous, fun and interesting  things would have happened.

You bet I am thankful for my struggle as it really did open completely new possibilities and makes me love life to the max each and every day.

I made friends with my MS, I don’t see it as an enemy as that would mean I am the enemy myself and that’s a not very productive thought pattern if you want to overcome and change things, only love can do that, not hate or fear. The few really bad days I’ve had in the past 12 months  I can 100% blame on my own reckless behaviour and I know I totally overdid it for 3-4 days prior to one of those – old me said limits are there to be pushed 😉

But all of the above also means I’m not sure if or how I’ll go on with Stumbling Princess moving forward.

After living this new life for several years and constantly raising awareness for MS I think it’s  time for a break, or even a goodbye, of Stumbling Princess and I feel the desire to start searching for another “life” purpose. Yep, at the moment I’m pretty tired of it, that’s why I’m offline for the summer. I don’t want to put that MS stamp on my forehead anymore, that’s why I also hiked the Inca trail to Machu Picchu as a secret “closet” MSer which was weird as I’ve always been very open about it.

I want people to get to know ME first and not my MS. Believe me, I’m way more fun 😉

I’m one of the ( MANY !!! ) MS patients that don’t “fit in the box” and unfollowed all “classic” MS societies/ groups out there over the past year as they just don’t cater to “patients” like me. Most of the times I don’t find any new, useful or inspiring information on their pages but at least some have finally started to pick up the healthy lifestyle, exercise and diet approach. However, thanks to social media I know there’s a HUGE tribe of other out of the box MS patients/ MS groups out there and I hope over time it’ll change the program run by the MS societies as MS is the disease with 1000 faces – and my face is also one of them.

That’s another point I’m really tired off – the arguments and judgements amongst MS patients themselves although, in the end,  we’re all in the same boat. None of us have an idea what’s going to happen tomorrow ( neither do “healthy” people by the way…)  and want a cure for MS. Whenever a new  MS campaign comes out it starts all over again,  the disease is either pictured as too positive or too negative and there’s always a huge, often mean discussion going on.

I just don’t like how it makes me feel and avoid reading/ watching anything “negative” in general as I don’t want to feed my subconscious mind with it. In the past months I even had a few moments I started to feel guilty about how “well” I am doing and that’s total BS and a clear sign  to simply step away.

Believe the diagnosis, not the prognosis.

If I could make a wish for my diagnosis anniversary it would be the addition of  mind body medicine within the MS centers ( actually within every hospital as all patients could benefit from it ).

In the Western medicine we have a disease management system and not a health care system, it’s focused on the symptoms and not the actual cause of a disease. Our Western system is great when it comes to crisis care but definitely not for chronic conditions where you need to find the root cause of the disease and not only suppress the symptoms. That system leads to the typical situation where a patient gets 3 pills to treat the symptoms and 5 additional ones to treat the side effect of those pills and so on.

Did you know that it’s not even sure yet if multiple sclerosis is an autoimmune disease at all or something completely different?

That’s why I’d like to see neurologists not only prescribe “disease modifying drugs” but also a healthy diet, exercise and something to calm down the “nerves”  and help to “relax” like meditation, massages, mindfulness, breath work, TCM, yoga – whatever supports and works for the individual patient ( and the hocus pocus me definitely wants to see something like psychotherapy in there as most MS patients have a trauma and emotional blockages)

Puking my guts out in the Peruvian Amazon during mainly terrifying ayahuasca ceremonies and by doing so releasing so much sadness, anger and grief was the most healing thing I ever did. Feeling unconditional love and self love for pretty much the first time in my life definitely has changed me. I’m eternally grateful for the “gift” I received from the Shipibo shamans, the facilitators, volunteers and my fellow ayahuasca drinkers. So much love. I wish I could organize a retreat especially for patients suffering from  chronic disease ( maybe I’ll make this my new life purpose 😉 ).

I feel so blessed for all the support I received from my family, Mr. X, Ruby, friends, coaches & trainers, kundalini/ breathwork/ meditation teachers and all of you that have touched my life and heart in the last year.

No one knows what the next 12 months will bring but my intentions are to find a new meaningful (life) purpose and to focus on even more (self) love and healing.

I can tell you one thing for sure:

I’ll keep on loving and living life to the fullest and make it an even better year no matter what 😛

Sending you love and blessings,

Stumbling Princess  Anja ❤

 

“I am thankful for my struggle because without it, I wouldn't have stumbled upon my strength.”-2

 

video review: My ayahuasca experiences

…to the ones who keep asking me about what actually happened during my three ayahuasca ceremonies with the Shipibo- Conibo shamans in the Peruvian Amazon – please check the video section of my  Stumbling Princess Facebook page or use the links below.

Again, it’s hard to find words for such an extraordinary, terrifying but at the same time amazing experience.  I tried my very best while recording these videos  🙂

You might need to use a headphone as for some reason the sound is not very good in these Facebook live videos I made a few weeks ago and they turned out longer than anticipated – but only give a tiny tiny glimpse into my experiences and healing ❤

Still busy with my “healing homework” but already brushing up on my Spanish ( especially the sentence “tengo tanto miedo” as this is how I felt each time)  and researching for another, most likely one MONTH long sacred plant medicine and/ or “master plant” diet retreat. Kind of funny as after my third ceremony I said I’ll never ever do anything like this again –  but all the fear is nothing compared to the insights I got and make use of on a daily basis.

1. Ayawhaaaat?!?! Quick introduction and my very first ayahuasca ceremony

2. Self Love and Forgiveness – my second ayahuasca ceremony

3. Surrender ( or you’re in for a hard, hard time  ) 

Enjoy! x

…and as @trueyouhealing said

“You can consume all the kale, ginger and turmeric in the world

but if you don’t face all the emotional s**t you’ve been stuffing down for years, something will always be missing.”

 

 

 

 

Peru

I’m baaaack – and in one piece. Or not, as I actually feel like a new me. Nothing has changed – but at the same time everything has changed in my world.

I definitely got shattered into a thousand pieces during my second ayahuasca ceremony  but now I know there are at least a dozen “(new) mes”  I wasn’t aware of, can you tell the difference ? 🙂

What can I say?

WOW. Peru blew me away! I wonder why it wasn’t  on my travel radar before as it is without question one ( if not THE)  the most breathtaking country I’ve been to. We travelled from the desert to the Amazon, then to the Andes and back to the desert. Peru offers such a diversity and that also shows in their cuisine ( well, I’m a foodie after all 😉 ) , most of our “superfoods” like quinoa, maca and  lucuma  originate there and it was easy to find meals that fit into our diets. Strolling over the markets and trying local dishes, fruits and veggies I never heard of and, last but not least, some of the 3000 (!!!) varieties of potatoes and 3500 (!!!!!!)  varieties of corn was definitely another highlight.

It was also the first holiday I was kind of always surrounded by puking people, during the ayahuasca ceremonies, on the tiny bumpy Cesna flight over the Nazca lines and even up in the Andes, left and right along the trail, as quite a few fellow hikers developed high altitude disease. “Pukidays” and that’s completely fine, we humans get used to everything 🙂

I didn’t know what to expect of this “healing through adventure trip” as it was all “firsts” and I had nothing to compare it to  – first time ayahuasca, first time Inca Trail, first time at a very high altitude for more than a week, first time I skipped my  evening dose of Tecfidera ( my MS drug)  on ceremony days, first time I was away from Ruby for almost 4 weeks – and the first real holiday with Mr. X, starting it right off with a rather  extreme and unusual one.

I’m back home for almost 2 weeks now and am still processing  all my impressions and new insights 24/7, integrating what I’ve learned and I’m lost for words  what has happened to me, especially in the Amazon. Going to the ayahuasca retreat was the BEST decision I’ve made in my life. It was also the scariest experience I’ve had so far but at the same time so so healing and LOVING. That loooove… There are no words to describe it, that’s why I decided not to try and write down my ayahuasca experiences, I want to  actually vlog ( video blog ) about it as I need to use my entire body language and sounds just to give you a tiny, tiny glimpse how working with this sacred plant medicine felt to me and what has changed in my life since .

Some of you might think I’ve lost it completely now but I know for a few others it makes perfect sense to travel to the Amazon for this very reason, to work with this medicine  – I even have a rather new Instagram follower who already signed up for an ayahuasca retreat in June and I wish her as much healing and love as I experienced ❤

Other highlights of this trip included Cusco, so full of history ( and fantastic (vegan/ vegetarian) restaurants ) ,  all those (pre) Inca ruins and the Inca Trail – completely fell in love with the Andes! That dramatic mountain scenery, all in bloom as it was the end of the rainy season ( luckily it only rained at night, 9 PM – 9 AM) and the hike itself  impressed me even more than our actual goal, the Machu Picchu. Luckily I didn’t have any issues with the high altitude ( Cusco sits on 3400m/ 11.150ft and parts of the Inca Trail even on 4215m/ 13.828ft) except that everything costs way more energy.

To be honest – the Inca Trail was actually a bit harder than expected as only about 2km of it’s 42km length are an actual path ( that’s really how it feels) , the other 40km are stairs, very steep and with (extremely)  high steps, up and down, up and down, that are very slippery, especially in the morning and required maximum concentration. I had a bit of a tough time on the the second day as our team decided to skip the usual camp and push on over yet another pass ( after making it over the “dead Woman’s Pass” with an altitude of 4215m in the morning – thanks to a small bottle of Coca-Cola and a pack of Skittles that gave me some much needed extra energy)   but more on that soon. I’ll never forget the faces of the other teams as we left that camp in the afternoon, lol. The second pass that day was definitely worse but we had the entire trail for ourselves.

We also spent a night at the Skylodge, sleeping in a glass pod suspended to the rock wall 400m above the magical Sacred Valley. BEST night’s rest I had on that trip, slept like a baby after a 2h vertical via ferret climb to get up there 🙂

The flight over the Nasca lines summed up the trip perfectly – wonderful, mind-blowing, mysterious – plus feeling a little nauseous 😉 .  I  found out I’m definitely NOT made to fly in tiny 4 pax Cesnas, I really didn’t enjoy the last 10 mins of that flight and only focused on the horizon, I couldn’t care less about the last 2-3 figures.

Mr. X had the BEST time during each ayahuasca ceremony ( I basically ONLY had scary/ uncomfortable ones, lol) but he also meditates/ works on himself already more than a decade. He doesn’t like ( to be on) social media and I totally respect that – so in case some are wondering why there’re no pictures of him or us together, that’s why. I didn’t leave him behind in the Amazon or on a mountain top 🙂  Going on such an extreme trip after only being together for 6 months is definitely a make or brake and I can say this was a 10000% MAKE.

Ruby also survived the almost 4 weeks without me and is secretly missing her sitter ( and vice versa) and all the other dogs. It was a win – win – win situation and I try to record some videos this and next week.

x

 

Taiko ( Japanese drums)

“If you’ve got a problem, take it out on a drum.”

Neil Peart

I finally made it happen, another 2018 New Years resolution – “playing” music again.

Music. Listening to music.  It’s the first thing I do in the morning to get my day started, the energy up and it usually only stops when I go to bed. It happens automatically, just like breathing.

It all started with my mum  wanted to give me an ukulele for christmas as I’ve always wanted to learn how to play the guitar. Like most German kids in the 80ies I learned how to play the recorder and read music in kindergarden, in my case followed by 7 years of flute lessons. My dad is a very good guitar player and also my late brother Christian used to play, that’s one of the reasons I can’t help but smile when I hear certain songs on the radio as I can hear “them” play and sing together, it takes me right back to some happy memories long long time ago.

Isn’t it funny how music can take us right back to certain events? Just like smell and taste.

However, the “click” I feel with percussion instruments  is stronger – not to mention that I’m a very, verrrry impatient person and learning how to play the guitar would be very, very frustrating FOR me. Luckily my mum asked me what I think about it before buying an actual ukulele, otherwise I would have never searched for a taiko school and pushed the whole “making music myself”  away again.

Why taiko? I remember I once saw a short documentary about a woman who started playing taiko as part of her breast cancer recovery, to let it all out and it must have made quite an impression on me. Drums in general are the oldest instruments there are and I find it very relaxing – even if it is a fast tempo.

I’m lucky that one of the best taiko schools is just a 10 min bike ride away and a few days ago  I joined my first lesson at Yamato Taiko School.

Yamato is actually a performing, touring troupe that has already given over 2500 shows in more than 51 countries and they present only their own compositions – the more advanced students also get to play these pieces. They got schools in Japan and the Netherlands,  students visit from all over Europe for their workshops here so I feel really blessed that they’re just around the corner.

 

 

There are many health benefits connected to taiko, from stress relief and a  full body workout  to the “heartbeat effect”  and last but not least – it’s super FUN!

I expected the “try out lesson” to be a lot of explaining, talking and little action. Guess what – it was the contrary, I was completely wrong 🙂

The lesson was fantastic from the very first minute. A lovely group of 7 students, 4 of them with taiko experience and a great teacher who burst with enthusiasm. We could right away pick whatever drum we wanted and after a full body warm up, some breathing technique and welcome bowing were asked to let it all out on the drum. It was loud and wild the first 10 min but the energy in that room went up with every beat and so did the smiles! It was the weirdest and most intense feeling standing there surrounded by the other drums as I could feel the vibration and sound moving up and down my body. In no time we ALL drummed together and learned our first bits of a Yamato performance. Taiko is more than “only”  drumming, it’s like a session in Japanese culture. Not only did we count, greet and really shout out while drumming in Japanese, we also learned about the etiquette, bowing and being mindful with everything we do in that room.

After the first hour we did not only drum together but had something like a battle, facing each other with the drums and also practising stage performance.

So all in all – drumming combines everything from mindfulness to breath work, “clearing” your voice and triggers completely new areas of your brain.

I bet you can tell I LOVED it and I cannot wait to return and start my new hobby once I return from my Peru adventure 🙂