Living with Syndrome of Raynaud

Afraid of what might happen

 

Coping Syndrome of Raynaud and tips on preventing an episode.

Whenever the temperatures get low. I will start wrapping myself in.
Whenever I step into a place that has air conditioning on, I shrink in.

Whenever there is a brisk breeze… I cover my ears.
Whenever I feel overwhelmed and tired, I wrap myself in a blanket to keep warm.

Afraid of what might happen. Afraid of my fingers, my toes, my ears, and my face turning in to numb white-yellow paralyzed lumps. Losing all fine-motor skills and not being able to move those areas of my body. The area’s around the temporarily affected body parts feel cramped. And it hurts. When I return into space with a stable temperature and something warm to start up my blood flow again the color and life starts to flow back into my feet again.

“I remember when I was a small child I would try and hide in the classroom”

I practically never talk about this to anyone. because it’s not a big deal to me. For me, it’s the most normal thing in the world. I remember when I was a small child I would try and hide in the classroom, trying to skip play-time in the schoolyard. I preferred to stay inside in winter time. I preferred to not go through the whole process of another episode again and again.

The only other person who had the same reaction to the cold is one of my best friends. And she told me she had googled it and that it might be Syndrome of Raynaud.
I thought, Nah, what are the odds of us both having this same thing. I probably just get cold easily and am “being a pussy about it” (such a Dutch way of thinking). So I never dug into it.

Years later I talked to my yoga teacher Ingvild at Yogaways about it. The topic came up because I tend to get really cold feet and lose all feeling and sense in my toes during yoga (which is something you do barefoot) Especially while doing yoga outside and it’s not a shimmering 25°C outside (or there is a cold breeze). She told me it sounded like Syndrome of Raynaud.

“But I realized this was a thing to be reckoned with. Ignoring it could turn out devastating.”

Ok. This was the second time someone pointed this out to me, so I thought it was time for some research. WOW! The pictures of white and yellow fingers and toes I found online were spot on what I was experiencing. The pictures of the black and blue limbs scared me a bit. I never let it go that far! Like, What the hell, the white stage was painful enough, and I always got my blood flow back before something like that could ever happen. But I realized this was a thing to be reckoned with. Ignoring it could turn out devastating.

Overall there is no real cure. But there are some things I do that will prevent me from having another big attack on my limbs.

 

Advice for dealing with Syndrome of Raynaud

 

  1. – Hot/cold – Training the veins and gaining flexibility there is making the attacks less heavy and makes recovery after an attack faster.
    Taking hot/cold showers, or going to the sauna is a well-controlled way to train the fine fains in your limbs.
    .
  2. – Protect yourself! – If it’s temperature and the thing that triggers an attack: Protect your hands, feet and face/ears before going into situations where you just KNOW you could have another episode.
    I also notice that whenever I’m tired or emotional or overwhelmed it tends to happen! So finding rest and nesting on the couch or the bed with a blanket when needed is key! And when an episode is triggered as an emotional or after a scare, It’s important to retrieve yourself. Get your heartbeat and adrenaline levels down. Drink some tea, move and warm up the affected areas gently. And try to distract yourself by reading, watching Netflix or talk to someone.
    .
  3. – Health! – Having a good healthy body will help you battle this, and will make the outbursts less extreme and less frequent. In short… It’s a veins problem. So obviously your overall health has a big influence on it. These things seem obvious (to me) but I’m going to sum them up anyway:
    -Do not smoke (This one is very important)
    -Eat plenty of deep green veggies
    -Move your body! Run, climb, swim, do yoga, fitness, whatever you like! As long as you get off that couch!
    -Get enough sleep
    -And be mindful! Do whatever you need to take your stress levels down!

 

I really hope that this might help some of you that may have these symptoms and maybe never realized what it was. And for everyone else: This is a thing, It’s not a huge thing, its not life-threatening, but it is something I have to live with. If you ever see me suddenly walk away when its cold, or stepping inside the hallway of school while everyone is standing outside in the cold, or waiting in the car instead of stepping out, I’m not being impolite, selfish or a pussy… I’m preventing an attack on my limbs. 😉 Not all conditions are visible.

Do you know anyone that feels pain or gets paralyzed limbs with a sudden change of temperatures or cold?

Blog by: Jolanda Marti
Photography: Michiel Fook

Wikipedia on Raynaud syndrome

Raynaud syndrome, also known as Raynaud’s phenomenon, is a medical condition in which spasm of arteries cause episodes of reduced blood flow.

Typically, the fingers, and less commonly the toes, are involved. Rarely, the nose, ears, or lips are affected. The episodes result in the affected part turning white and then blue.  Often, numbness or pain occurs. As blood flow returns, the area turns red and burns.

The episodes typically last minutes, but can last several hours. Read more…

Yoga and Syndrome of Raynaud

One of the things I recently started doing is wearing these barefoot shoes while doing yoga whenever  the temperature is too cold. Wildling shoes geared our whole family up with their barefoot shoes and gave me these for my yoga practice!


Just perfect for preventing getting cold feet during my yoga practice and still give be the next best thing after real bare-foot yoga. Because of the freedom my feet and toes have in these shoes, I am able to protect myself from the cold and still feel like being barefoot. The top of the shoe is smooth which allows me to glide, while the thin and flexible sole gives me a lot of grip on the ground and prevents me from slipping! It works better than I ever could have hoped for! So grateful for this solution!

So for everyone doing yoga on rough terrain or who get cold feet and maybe get cramps or has Syndrome of Raynaud like me!? These Barefoot shoes are a really good solution!

Dance all the way to South Africa

South African
Dance battle!

Whaaaattt!? We had such an amazing weekend! We are still in awe about it.

We went to a South African Dance battle Livestream recording who invited a select group of reporters and influencers. Organized by @ontmoetzuidafrica

We took off from Amsterdam central station in a riverboat where we had a traditional South African diner onboard. We had a great time and met lovely and inspiring people!

We docket at Zaandam and entered “de partonage where the event would take place. And oh, my! We witnessed a spectacle of energy, movement, rhythm, emotion, and passion. So amazing! #mindisblown

Inspired and determined to go to South Africa someday we entered the boat to go back to Amsterdam. Had left us totally impressed! 

Could you imagine the surprise when we heard that we where the ones that would walk off the boat with two tickets to go to South Africa!?  Say Whaaaattt!?!?
@ontmoetzuidafrica Is actually sending us to South Africa!!! We still have trouble wrapping our heads around it. So while this information is sinking in I’m telling you guys to prepare for some epic video’s coming up on our YT channel this year!       Love Jolanda

To all the Dutch readers:  WIN JIJ EEN RETOURTJE NAAR ZUID AFRIkA!?

Jaja alleen voor de “dutchies” YUP! Je hoort het goed! Wij zijn al volop onze reis aan het plannen maar JIJ kunt ook twee vliegtickets bemachtigen, en wie weet komen we je wel tegen op een avontuur door Zuid Afrika! Hoe tof zou dat zijn!? 

Hoe? Wie? Wat? Waar?

Doe mee en win! Stuur jouw versie van de Gwara Gwara dans in en maak kans op twee vliegtickets naar Zuid-Afrika! Plaats je dansfilmpje in de comments van dit facebook bericht. En de dans met de meeste likes wint!

 


WE LOVED it!

Ik zeg het nog maar eens… Wat een weekend, wat een weekend.
Nou, je weet wat je te doen staat, de voetjes van de vloer en laat ze je beste dans moves zien!

Liefs,  Jolanda

Kijk de LIVE stream hier terug:

Het was zo tof om bij de opnames aanwezig te zijn! 
Voor de zeer oplettende kijker, we stonden verdekt opgesteld links in beeld te kijken naar dit spektakel. Volgens mij flitsen we 1 of 2 keer wazig door de hoek van het beeld! haha!

 

Shoot us mom!

Never let children pose… let them be themselves!

From the moment Miley was born until she was 4,5 years old we had a big photo studio. She grew up surrounded by camera’s, lights, makeup, fashion, and set styling… She occasionally watched the models getting ready and saw me shooting them in our photo studio. She saw them “pose” naturally and make subtle changes in their pose with fluid movements. changing expressions, taking directions from me and all of that without looking forced or unnatural. And she loved it.

As it comes to photo shooting kids, I like them to be interactive. give them something to do, something to engage with, something to play with. Anything but posing! I don’t like kids posing, because most kids (Really, I mean 99%) look forced and unnatural. That kind of photo’s with kids smiling those fake (almost creepy) smiles makes my hairs stand up. Not cool. Just fake.

So whenever I’m shooting kids (my one or any kids for that matter)… I let them play.
I have a strict NO POSING rule.

But… Tiny baby girls turn in to big baby girls! And then that day came, the day when Miley (8yrs) Came up to me dressed a bit much over the top and  Asked me “Mom? Can you shoot me? I’ve made everything ready!”
I looked over and there was my living room turned in to a complete styled set. With 3 different concepts, she wanted to work on!  I was like “What the….!?!? uuuh… Ok!? I guess?”

So we could proceed in peace. After every Klik, Miley made a tiny adjustment in pose, expression or looking direction. I didn’t have to give her any directions. She was totally in control.  Like she understood exactly what it was she wanted to reflect, express and what story she wanted to tell. I felt a warm proud glow in my heart for her. What a great way to express yourself.  There goes my “NO posing rule” for her… She has got this down.

 

Turned out she had a school project where they had to take their favorite piece of clothing, make a photo of it, and write a little poem about it. She wanted to create a photo she had pictured in her mind. (Creative little creature) So who am I to refuse such a brilliant initiative from my 8-year-old.

I grabbed my camera gear and as she stepped in front of the camera. Wow! She is actually doing a really good job posing! Not one Photo where she looked unnatural or overly posed. I guess she intensively studied the professional models in our studio! My little baby copy-cat. Loving this…

After a few minutes, her little baby sisters decided they wanted attention too, and started to jump on top of Miley… So I had to promise them that I would shoot them too tf they waited their turn. And If they would go and play a bit more I would call them and take their picture.


As for her sisters… The rule still stands. No posing! PLAY! Once I called them for their turn to shoot, I gave them something to keep busy! Singing a song,  playing peekaboo, giving them a ukelele or a watering can to play with. And as usual, that way I had a fun and playful shoot with my two babies. And my no posing strategy still worked out worked perfectly fine with them! Scroll all the way down to see the rest of all the photo’s we took!


How do you take pictures of your kids? I’m thinking of making a series of DIY video’s in photography toppics like “kids photography” .
Would you think that’s something you would like to see? Anny requests on specivic photography toppics!?


Love,

  Jolanda, Michiel,
Miley Haley & Quinn

VIDEO – Getting My MOM Tatoo

Baby name MOMMY Tattoo

I got my first tattoo a while back and I wrote a BLOGPOST about it!
Now I’ve also made a video of my experience. Check it out and don’t forget to subscribe on my YT channel!

So in this video, you will see me getting my first tattoo! 7 Years ago I came up with the idea of putting all my baby’s names on my forearm in one long stretched line. I’m not someone who gets a tattoo in an impulse, and Maybe we would get more kids in the future, and I wanted to include all of my baby’s names in it… I spend a long time designing a tattoo that was minimalistic and had exactly the look that I had in mind. Like practicing an autograph, The name tattoo design had to have the perfect flow and casual hand-drawn feel to it. 

So now 7 years later with 3 kids in total, I have my mom tattoo with all the names of my kids! It only took 20 minutes and didn’t hurt at all!
—-Miley—Haley—Quinn—  Just Perfect!
And The end result is exactly how I hoped it would be!

I really really love my first tattoo! Happy as can be, with my hand-drawn tattoo line design perfected over the past 7 years. Perfectly put on my arm by Manon from Le Nou Tattoo. 

So once more:  Thanks, Michiel for making the reservation and tanks mom for sponsoring half of it for my B-day! To my three baby girls, Miley, Haley & Quinn, I love you forever, just like this tattoo will be on my arm! 

Would you ever get a dad/  mommy tattoo, name tattoo or do you already have one!? What do you think of mine!? Let me know what you think in the comment section of the video here or on Youtube!

 

Love,
  Jolanda, Michiel,
Miley Haley & Quinn

Music in this video is by:
Meydän – https://soundcloud.com/meydansound/

Getting my first tattoo

Yes!!! Finally! I Did it!

 

At first, it was a rather simple idea… a thin straight line from my elbow to my wrist within the middle the letters that spelled the name of my one and only baby girl. ____Miley____
But. I was still breastfeeding. And everyone strongly advised against it back then. (this was 7 years ago) Fair enough I thought So after 3 years of breastfeeding It became clear there would be another baby sooner or later. Might as well wait a bit and make it a line with two names.

Patience.

My second baby girl was born and I remember doodling on every piece of paper their names in one long connected line.  ____Miley____&___Haley____  Trying to get the shape and caligraphy just right.

Like practicing an autograph, The line had to have the perfect flow and casual hand-drawn feel to it, styled and still be straight and readable. Not too curly not to dull, but just interesting enough. And certainly not some standard existing Font. Besides that, I still had to wait. Because…still breastfeeding.

Haley became 1,5 and I started searching for the right Tatoo artist. I was prepared to travel If I’d found one further away. As long as the artist could make clean thin lines and I felt “right” about the person behind the needle. As I would wair his or her “mark” for the rest of my days, I was making sure It would be a positive experience.

And then I became pregnant with baby nr.3 The most beautiful little-unexpected surprise of our lives.  And by now, you must know, I had been waiting for 5 years to get this thing on my arm…  So back to the drawing board to add one more name.  ___Miley___Haley___Quinn___   Sometimes I even took a pen and drew it on my arm and took a selfie to see how it would look! Now I’m typing this I realize that this may sound a bit obsessed. Well, maybe I was.

When Quinn was still a newborn we were in a nearby town when we passed by this awesome looking tattoo shop. It wasn’t like any tattoo shop I’d ever seen. It was light, fresh, with a gorgeous mandala-logo on the window. Inside there were plants and beautiful artwork. The whole shop looked welcoming, soft, friendly and creative. So we walked in and we met Manon from Le Nou Tattoo. Her artwork is just amazingly full of feminine shapes and figures, detailed mandalas, Botanics, and subtle shades and razor-sharp fine lines Check out her Instagram here.  She was so friendly, relaxed with a calm confidence that just made me trust her instantly! But Quinn was still a Tiny baby. So I waited just a bit longer.

“The line had to have the perfect flow and casual hand-drawn feel to it.”

When Quinn got one-year-old I became impatient. A few years back my eldest daughter still breastfed occasionally until she was 5 years old. That would mean that it would take another whole four years before I could have my ultimate “mommy Tattoo”.

 

Breastfeeding and getting a Tattoo?

But why isn’t it a good Idea to get a Tattoo while breastfeeding? Mainly, If your tattoo would get infected you maybe would need Antibiotics that don’t go well together with breastfeeding. Some say there is a slightly bigger chance of infection because of a lower immune system and a bit thinner blood. But let’s be honest, I think those last two reasons have as much to do with delivering a baby and recovering from that than breastfeeding. I guess having a tattoo within the first 9 months after having a baby/pregnancy maybe isn’t a good idea either. Anyway, This is What the breastfeeding experts at La Leche League had to say about it. 

 

“I’m Hearing myself say “Michiel, I really think you have to hold my hand””

“Shurley the pain is going to get so much worse. But it wasn’t…

“this is it!?” I asked.”

“I suddenly became really nervous!
There was something I didn’t think of beforehand…
Would this hurt much!?”

The time is now

After 1,5 years of breastfeeding my babies aren’t that dependent on breastfeeding anymore, Its just a nice bonus for all the antibodies and such. But if I would have to skip one week for what reason so ever. She would survive just fine! Besides that, I wasn’t going to let a Tiny little tattoo get infected. A good licensed tattoo shop,  healthy lifestyle, Hygiene and common sense are your friends.

So I decided it was time. I sure as hell wasn’t going to wait until I am 38 to do this thing!
It already had waited for ages (7 years). And then last Oktober Michiel and my Mom surprised me for my 34th birthday with a booked appointment at “Le Nou“. The earliest date available was February the 7th. Wich says something about how good she is I guess.

 

February 7th, 2019

Happy as can be, with my hand-drawn line design perfected over the past 7 years. (being a bit of a neurotic perfectionist about it, but it was done.)  I’d never been more ready for this than for anything in my life!  Even a pregnancy takes less freaking time than it takes me to get a tiny little tattoo! I mean really!?

Only until the very last moment when a sat down and with the sight of the surprisingly friendly looking tattoo machine I suddenly became really nervous! There was something I didn’t think of beforehand…  Would this hurt much!? I had been so busy thinking of the design, artist, timing… and now only seconds to go and my heard was pounding like crazy. I’m Hearing myself say “Michiel, I really think you have to hold my hand”

 

The sound of the buzzing needle and 3..2..1… 

I remember thinking the first 10 seconds, this isn’t IT yet, It can’t be. Shurley the pain is going to get so much worse. But it wasn’t… “this is it!?” I asked.  “Yes, that’s it! Its actually get easier as I move towards your wrist!” WOW, What a relief! Feels a bit like sharp scratching. This didn’t hurt at all! It took no more than 20 minutes and than it was all done. Not a drop of blood or wound fluid had spilled. It looked sharp and dry. Even the redness wasn’t so bad. And I never was happier with a birthday gift!

Now 2 days later I still find myself looking at it and being so completely content with it. So happy I had to wait because now I have all 3 names in it. If I hadn’t had to wait until my breastfeeding days where over I would probably have done just the first name and later two separate tattoos with every new baby name. What I like about this one now is that what I thought would be just a cool design turned out to be a timeline. One continuous line, their names all connected. It’s perfect! Everything came together and I’m loving it!

LOVE it!

Thanks, Michiel for making the reservation and tanks mom for sponsoring half of it for my B-day, and last but not least thanks to Manon from LeNou Tattoo for doing an awesome job!

And to my three baby girls, Miley, Haley & Quinn, I love you forever, just like this tattoo.
Want to see the end result!? scroll down to see the rest of the photo series.

Love,  Jolanda

 

Going to Amsterdam

Let’s go to Amsterdam!

We will go and have a drink at the docs. (at Pllek) I will hold you close until you will feel secure enough to explore a bit.

I will drink my tea, with some honey and we will sit by the fire…
And then you will run through the cafe like you own the place.
Of course, it will be totally exhausting running after you the whole time. but I don’t mind.

Then I will wrap you up high and warm up against me and we will take the ferry to the central station.
We are feeling tiny and light, passing people by left and right through the rushing crowds trying to board the fairy. And well be watching the water and buildings pass as we cuddle all the way there.

Ah Amsterdam
So many intriguing people, all different shapes and sizes, all going different places, living different lives.

We will wander around a bit, maybe do some window shopping, and we will be all alone while being surrounded by so many others. Standing still, watching everyone rushes through their daily routine.

So glad to have you so close to me in my arms.
This is the city, my love. Is’nt it magical!?

Love,
  Jolanda, Michiel,
Miley Haley & Quinn

Music in this video is by:
Meydän – https://soundcloud.com/meydansound/

Babywrap is from: We are Wovens – Boots are from: H&M – 
Blue fauxfur coat from:  Zara – Big floppy hat from: H&M –  Orange vest: Pull and bear – Flower dress: Pull and bear

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