2017/02/17

My hero

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My hero, Johan. We have had, and we still have, so many ups and downs, because here it comes: I am very (very) sick. Johan always told ME: Sandra, you've showed me what love is. All I can say is: THAT man has showed me what true fucking crazy loco fantastic love is. What he's done for me is... Pure love.

I'm 38 and it's about time I start taking care of myself, which means GO TO A DOCTOR and tell the whole story. I used to think taking care of myself meant to leave everyone else out, doctors included (only went to doctors a few times to calm down friends/family). Someone who deals with my disease professionally on a daily basis, and who knows me since I was born, has recently diagnosed WHAT I suffer from and it helps a lot to know what it is. Now that I know, it's so obvious - everything is hopefully going to fall into place, instead of pieces.

This is going to be a long, life-time long (because it's chronic), struggle that has been a fucking WAR for so many years and hopefully (hopefully) the war is going to be over soon. I can live with the struggle, but this war that I'm at now is about to kill me.

I want to be open about this, and I will tell you more when I'm ready. Until then I will focus on getting better and still post pictures here and maybe not too many personal stories (unless you are interested, sometimes personal stories can be scary, but I hope to help other people by telling my story). Thank you for reading.

38 comments:

  1. Thanks for sharing, Sandra. I wish you all the love you can get and may the force be with you! :)

    Greetings, Sarah

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  2. Yes, many thanks for sharing. That's what I love about online communities - as distancing and divisive as they can be, they can also be unifying and uplifting, and sharing something that is personal and maybe difficult to open up about definitely is unifying and uplifting. I wish you all the best, it sounds like you're surrounded by the best support system, and hopefully things will change for the better <3 All the love from Copenhagen!

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  3. Whatever your struggle is, Sandra, we are open to listening and giving you support. You have so many readers that care about you! Stay strong and write when you have the energy. Take care of yourself first and foremost!

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  4. Tak for at dele, Sandra. Jeg håber det bedste for dig.

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  5. Dear Sandra,

    I've been enjoying your photos and stories (and my beloved wrist-worms) for many years. First here and later on Instagram. I've never left a comment before but today I feel that I have the necessity to send you a big (digital) hug and good vibes. I hope that you can find the strenght to deal with everything.
    Lots of love from Spain

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  6. I also have been following your photos for a long time and have never posted before now. I'm glad that you are getting the care you need and wish you strength and lots of love. Please feel free to share personal stories if/when you feel up to it and want to share. There are a lot of us out here who care. - Lilah

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  7. thank you so much for sharing your story - i really do hope you get all the help you need to deal with your troubles! and yes, it is so good to hear how other people are dealing with complicated stuff - you go, girl! i am really amazed by the love you two share since i didn´t dare to bond too much with someone else because of health reasons - i was always worried i might be a burden, but this shows me that this thought might be very wrong indeed!

    so - thank you and all the best in the world to you for ending this war!

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  8. Thank you for sharing, Sandra!! I've been reading your blog for a long time and really enjoy your photos. It was very brave of you to write about this. As a fellow chronic disease sufferer, I hear you. Sending you lots of digital hugs and thinking of you.

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  9. Sandra, thank you for sharing so much of your life with us. I'm going through something similar right now, and it's heartening to know that I'm not alone, that someone that I respect and admire (from afar) is struggling too, not only with a long undiagnosed disease but also with this difficult process of seeking help. I hope you're well.

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  10. Dear, dear Sandra,

    You don't know me, I enjoy your beautiful pictures and posts for many years now, and looking foreword to them.
    I send you lots of hope and friendship because you are one of those young people who bring beauty, happiness and hope to the world. There are many people like you, something great and new will rise from your generation. Thank you so much for that. May those qualities (beauty, happiness, hope) shine on you and pull you through this, I really hope so, so strong, so much...

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  11. In some ways we all have something diagnosed - mental, physical, spiritual - past, present, future, chronic. I too have chronic disease- though I look healthy on the outside, I don't always feel so great on the inside. So glad you have Johan's support and love. Keeping you in my thoughts.

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  12. Dear Sandra, lots of hugs and all my best to you. Getting a diagnosis can be a relief even when it's not praticularly good news. I got some life altering news (luckily not life threatening) myself late last summer, and having others be open about their struggles is always a huge deal. Thank you, and good luck with everything!

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  13. Thanks for sharing.
    Sharing can be a good kind of medicine, and the side effect: telling your story might help/inspire others to move onwards in a positive way. The more you share your story the more you start living working with whatever condition you mig have instead of against it. Stay strong.

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  14. Take care, Sandra! Whatever you decide to share, I'm sure most of your readers will appreciate it and learn from it, be it scary stories or pretty pictures. We're here to hear what you have to say. Warmest wishes!

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  15. Sandra, much love to you as you address these health challenges. I'm a long time reader and haven't really commented, but wanted to let you know how meaningful your posts are, these glimpses into how you see the world. Your honesty does good and your photographs are beautiful. Hugs from California

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  16. Take care of yourself Sandra,
    I wish you the best !

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  17. Thinking of you Sandra.
    I have loved your images for so long and wanted to send you some good restorative vibes even if it be from the other side of the world.

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  18. Sorry to hear that you are ill but glad you are pursuing help. Best wishes. You have a good person by your side and that will help! Courage!

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  19. Dina blogg är fantastisk. Världen. Fångsten. Din fångst. Kikat in här länge, aldrig kommenterat (tror jag). Heja dig! Dela, dela inte. Dela allt du vill och känner för. Vi peppar dig! /H

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  20. Take your time, dear Sandra, all the time you need.
    We, women with chronic diseases, are blessed with our significant halves
    and creativity and walking as an outlet.
    Thank you for sharing your authentic,
    pure, whole you,
    with us, with the world.
    You make it a more beautiful place!
    Thanks to you, there is always some Berlin in Provence.
    Thanks to your merino creations,
    my writing fingers feel warm, comfy and colourful,
    three seasons out of four.

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  21. Hello Sandra, greetings and best wishes from Vermont in new england, usa. I was diagnosed with two unexpected chronic conditions while seeing a doctor for an easily cured but very annoying condition last spring. I struggled along and have changed so much fo dealing with them. I have not shared this news with anyone in my life, but I know I will have to eventually. It is maybe from shame, and surprise. But also from just my character I guess. So, we will continue on, eh?! Cheers for now...

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  22. another long time reader here wishing you courage and all the best in your journey to better health.

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  23. Thinking of you xxx thank you for sharing your pictures and stories from your life

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  24. dear sandra,
    So far i was a silent reader because my english is bad. But now I would like to wish you all the best for your way. i love your blog. and i hope you get better. sabine

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  25. Alles Liebe und Gute für dich...und Johan......Christine

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  26. Sandra, OMG! I hope you get what you need. Feel better. So many good wishes your way - Pamela in Vt

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  27. Hi, Sandra! I am Xiana from South Korea.
    I am a big fan of your blog but couldn't leave any message because of my poor English.
    Anyway, hope you're well and will get better soon. :)
    (I am struggling with chronic disease as well. Wish you all the best!)

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  28. So sorry to hear you are - and have been - struggling. So glad to hear you have a diagnosis and a path forward. Wishing you wellness and happiness x

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  29. Wish you a speedy recovery, Sandra.

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  30. All the best, Sandra. Just the best for you!

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  31. Hi Sandra. I read your blog almost from the begining.
    I rarely comment here, but I appreciate your beautiful photographs and other creations.
    I'm here to tell you that three weeks ago I have been diagnosed with chronic disease too, right after I got to the hospital straight from my office. This is really life changing moment to know that you to live with the disease, as it's not going away. I am sending you my thoughts and positive vibe. Stay strong.

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  32. Vil bare sende deg en varm klem og gode tanker. Du og Johan virker som et sånt par som virkelig elsker hverandre. Jeg håper du finner hjelp og at du får gode dager fremover. Du inspirer med dine ord og fotografier. Varm klem fra Katrine i Oslo

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  33. I truly hope everything is going to work out for you. Take care, you're an inspiration to us all. <3
    - Liisa

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  34. Warm thoughts from New Zealand!

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  35. Share as much as you like. We're all here for you, cheering you on.

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