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Planning for medical trips abroad is really exhausting and has a lot of intricate work involved. Figuring out finances, timings to see all the specialists, lists of medications to take with and to get more of, flights, car rentals, someone to pick us up/ drop us off etc etc! 
Unfortunately my monthly disability social security which usually finances all this has been put on hold for some reason (February will be the 3rd month) meaning we’re having to use our wedding savings to finance this trip, and pay it back slowly when we get back.
Of course we’d be £1000 better off to begin with, if my nothing-in-law hadn’t pretended and begged and said she needed £1000 from us as she didn’t have any money and was in desperate need. Yet it turned out she just wanted to put it into savings and then had the nerve to tell her “fella” that if he ever wanted it for a course he could have it. As if he’d ever ask her for money again, so she could try to control him, pulling his strings whenever she doesn’t get her way. 
I hate touching our wedding savings, but to set him free from her I’d give up anything for him; even the wedding of my dreams. As long as he’s there I don’t care what the day is like.

Since that happened we’re also using the savings for our marriage/ future as it’s customary in both my cultures to get certain tests; bloodwork, genetics etc done before marrying so that you’re aware of everything before you have a baby. It helps protect against things like rhesus disease.
In fact in Greece you can’t actually marry without producing your results to the Church. We’re just doing it to be safe, and since I have so many illnesses I do want to know if any are inheritable, and I would want to be prepared if jake and I are rhesus opposites. So that when we conceive in the future we can tell our doctors who can administer the appropriate injection. ☺️ Back to figuring out flights, cars and how to fit a wheelchair and 6 suitcases in a Nissan Notte!
Planning for medical trips abroad is really exhausting and has a lot of intricate work involved. Figuring out finances, timings to see all the specialists, lists of medications to take with and to get more of, flights, car rentals, someone to pick us up/ drop us off etc etc! Unfortunately my monthly disability social security which usually finances all this has been put on hold for some reason (February will be the 3rd month) meaning we’re having to use our wedding savings to finance this trip, and pay it back slowly when we get back. Of course we’d be £1000 better off to begin with, if my nothing-in-law hadn’t pretended and begged and said she needed £1000 from us as she didn’t have any money and was in desperate need. Yet it turned out she just wanted to put it into savings and then had the nerve to tell her “fella” that if he ever wanted it for a course he could have it. As if he’d ever ask her for money again, so she could try to control him, pulling his strings whenever she doesn’t get her way. I hate touching our wedding savings, but to set him free from her I’d give up anything for him; even the wedding of my dreams. As long as he’s there I don’t care what the day is like. Since that happened we’re also using the savings for our marriage/ future as it’s customary in both my cultures to get certain tests; bloodwork, genetics etc done before marrying so that you’re aware of everything before you have a baby. It helps protect against things like rhesus disease. In fact in Greece you can’t actually marry without producing your results to the Church. We’re just doing it to be safe, and since I have so many illnesses I do want to know if any are inheritable, and I would want to be prepared if jake and I are rhesus opposites. So that when we conceive in the future we can tell our doctors who can administer the appropriate injection. ☺️ Back to figuring out flights, cars and how to fit a wheelchair and 6 suitcases in a Nissan Notte!
❄❄❄❄❄❄❄
هوا سرد است و برف آهسته می بارد

ز ابری ساکت و خاکستری رنگ

زمین را بارشِ مثقال،مثقال

فرستد پوشش فرسنگ،فرسنگ

سرود کلبه ی بی روزن شب

سرود برف و باران است امشب

ولی از زوزه های باد پیداست

که شب، مهمان توفان ست امشب

دوان بر پرده های برف ها ،باد،

روان بر بال های باد، باران؛

درون کلبه ی بی روزن شب،

شب توفانی سرد زمستان
❄❄❄❄❄❄❄
📸by : @yadegari_photography1
#دختر_مریخی #منیژه #مدلینگ_معلول #کت_واک_معلولین #مدل #مدلینگ #باربی #دختر_معلول_ماجراجو #اولین_زن_مدل_معلول_ایرانی #اولین_مدل_معلول_ایران #منوتو #منوتوپلاس #صدزن 
#manijehtr #martian_girl #disabled_adventurer 
#Irans_first_handicapped_model #first_disabled_iranian_female_model #disabled_modeling #disabled_model #disabledfashion #wheelchairgirl #wheelchairbarbie #wheelchairlife #instagram #witw #lifegoesonwheels #Wheelchair #Fashion #Disability
❄❄❄❄❄❄❄ هوا سرد است و برف آهسته می بارد ز ابری ساکت و خاکستری رنگ زمین را بارشِ مثقال،مثقال فرستد پوشش فرسنگ،فرسنگ سرود کلبه ی بی روزن شب سرود برف و باران است امشب ولی از زوزه های باد پیداست که شب، مهمان توفان ست امشب دوان بر پرده های برف ها ،باد، روان بر بال های باد، باران؛ درون کلبه ی بی روزن شب، شب توفانی سرد زمستان ❄❄❄❄❄❄❄ 📸by : @yadegari_photography1 #دختر_مریخی  #منیژه  #مدلینگ_معلول  #کت_واک_معلولین  #مدل  #مدلینگ  #باربی  #دختر_معلول_ماجراجو  #اولین_زن_مدل_معلول_ایرانی  #اولین_مدل_معلول_ایران  #منوتو  #منوتوپلاس  #صدزن  #manijehtr  #martian_girl  #disabled_adventurer  #Irans_first_handicapped_model  #first_disabled_iranian_female_model  #disabled_modeling  #disabled_model  #disabledfashion  #wheelchairgirl  #wheelchairbarbie  #wheelchairlife  #instagram  #witw  #lifegoesonwheels  #Wheelchair  #Fashion  #Disability 
Huhu ihr lieben 😘 ja ich lebe noch 😋 das Wetter ist soooooo... "nein Jenny countenance" 😂
OK sagen wir so ich mache das Beste daraus🙈 das heißt ich verbringe die Zeit wahnsinnig gerne mit den Raubkatzen, die auch gerne von meinen #Assistenten bespaßt werden😂😂 tja liebe Samtpfoten da müsst ihr jetzt durch XD
Das Frauchen schlägt sich übrigens wacker was Erkältung betrifft bis jetzt habe ich noch ganz gut jeden Ansatz von leichten Husten oder laufender Nase ganz gut den Kampf angesagt. 💪 #smafighter
Und das einzigste was zurzeit immer wieder die Oberhand gewinnt ist diese verdammte Müdigkeit! Die Erschöpfung die sich so in den Tag rein frisst dass man eigentlich den ganzen Tag schlafen müsste... aber das tue ich nicht... ich möchte doch schließlich teilhaben an meinem eigenen Leben! . Wenn ich vorgehabt hätte den Tag zu verschlafen, wäre ich eine Katze geworden😜🐈 aber mein Kopf funktioniert und ich plane schon ein paar Dinge die ich dieses Jahr unbedingt machen möchte💪😊 und ich freue mich weiterhin darauf meinen Vorsatz zu erfüllen  noch mehr Zeit mit meinen Freunden zu verbringen ❤️ hat übrigens schon ganz gut funktioniert😁 @ladymandrakes.
Na ja und jetzt wird erstmal das blöde Wetter überstanden und auf besseres Wetter gehofft, denn mein Schatz @mattb4530 schuldet mir noch ein Schlumpf Eis😂😘🍦
Bis bald und lasst es euch gut gehen 🤗 eure #jennyksma

#rolligirl #smagirl #fightsma  #wheelchairbarbie #wheelchairgirl #wheelchairlife #spinalemuskelatrophie #catcontent #catsofinstagram
Huhu ihr lieben 😘 ja ich lebe noch 😋 das Wetter ist soooooo... "nein Jenny countenance" 😂 OK sagen wir so ich mache das Beste daraus🙈 das heißt ich verbringe die Zeit wahnsinnig gerne mit den Raubkatzen, die auch gerne von meinen #Assistenten  bespaßt werden😂😂 tja liebe Samtpfoten da müsst ihr jetzt durch XD Das Frauchen schlägt sich übrigens wacker was Erkältung betrifft bis jetzt habe ich noch ganz gut jeden Ansatz von leichten Husten oder laufender Nase ganz gut den Kampf angesagt. 💪 #smafighter  Und das einzigste was zurzeit immer wieder die Oberhand gewinnt ist diese verdammte Müdigkeit! Die Erschöpfung die sich so in den Tag rein frisst dass man eigentlich den ganzen Tag schlafen müsste... aber das tue ich nicht... ich möchte doch schließlich teilhaben an meinem eigenen Leben! . Wenn ich vorgehabt hätte den Tag zu verschlafen, wäre ich eine Katze geworden😜🐈 aber mein Kopf funktioniert und ich plane schon ein paar Dinge die ich dieses Jahr unbedingt machen möchte💪😊 und ich freue mich weiterhin darauf meinen Vorsatz zu erfüllen noch mehr Zeit mit meinen Freunden zu verbringen ❤️ hat übrigens schon ganz gut funktioniert😁 @ladymandrakes. Na ja und jetzt wird erstmal das blöde Wetter überstanden und auf besseres Wetter gehofft, denn mein Schatz @mattb4530 schuldet mir noch ein Schlumpf Eis😂😘🍦 Bis bald und lasst es euch gut gehen 🤗 eure #jennyksma  #rolligirl  #smagirl  #fightsma  #wheelchairbarbie  #wheelchairgirl  #wheelchairlife  #spinalemuskelatrophie  #catcontent  #catsofinstagram 
That's me and @trinafight4rights (the reigning Ms. Wheelchair NY) - I met her in Brooklyn last summer and asked her to appear on my show. She is a strong advocate for disability rights. Her interview airs 1/27 on MNN and our YouTube channel.
That's me and @trinafight4rights (the reigning Ms. Wheelchair NY) - I met her in Brooklyn last summer and asked her to appear on my show. She is a strong advocate for disability rights. Her interview airs 1/27 on MNN and our YouTube channel.
Wirklich süß und überraschend habe ich dieses bezaubernde #mermaidtastische #armband von der lieben @ladymandrakes bekommen 😍 ich habe es gleich angezogen und mich wieder ein kleines bisschen mehr wie eine Meerjungfrau gefühlt hihi 🦀🐙🐚🐬 #friends #smagirls #mermaidstuff #iloveit #dankedirvonherzen 😘
#rolligirl #feinmotorik #fightsma #smafighter #wheelchairbarbie
🤩 Bald geschafft 🤩 Soon at the end 🤩 Stellt Euch vor bisher ging es über die Vene. Am dritten Tag hat zwar die Nadel aufgegeben, aber nach ein bisschen Stechen, ging es wieder. Und dann brauchte ich noch eine Nadel in da lief ein großer Teil daneben). Habe jetzt einen Luftballonarm. Aber im Be ♥️ Happy, kein ZVK. Hey den Tag morgen schaffe ich auch noch 🤞 🤩. Aber auch im Krankenhaus möchte ich schön sein, aber darunter dürftet ihr mich nicht sehen 🤦‍♀️. #goodnews #goodhope #lucky #hopeful #picofthephoto #photography #nofilter #braidedhair #longhairdontcare #blonde #ecasting #disabilitypride #disabilityawareness #aware #disabilityrights #wheelchairgirl #wheelchairbarbie #wheelchairlife #disabledandproud #disabledfashion #disabledmodels #disabledpeople #happyme #thankful #thankfuleveryday #disabilitylife #disability #ootd #ootdfashion #disabledblogger
🤩 Bald geschafft 🤩 Soon at the end 🤩 Stellt Euch vor bisher ging es über die Vene. Am dritten Tag hat zwar die Nadel aufgegeben, aber nach ein bisschen Stechen, ging es wieder. Und dann brauchte ich noch eine Nadel in da lief ein großer Teil daneben). Habe jetzt einen Luftballonarm. Aber im Be ♥️ Happy, kein ZVK. Hey den Tag morgen schaffe ich auch noch 🤞 🤩. Aber auch im Krankenhaus möchte ich schön sein, aber darunter dürftet ihr mich nicht sehen 🤦‍♀️. #goodnews  #goodhope  #lucky  #hopeful  #picofthephoto  #photography  #nofilter  #braidedhair  #longhairdontcare  #blonde  #ecasting  #disabilitypride  #disabilityawareness  #aware  #disabilityrights  #wheelchairgirl  #wheelchairbarbie  #wheelchairlife  #disabledandproud  #disabledfashion  #disabledmodels  #disabledpeople  #happyme  #thankful  #thankfuleveryday  #disabilitylife  #disability  #ootd  #ootdfashion  #disabledblogger 
Today I was accused of having Munchausen's by my future nothing-in-law. Apparently you can fake a blood clot to the brain and multiple chronic illnesses. But haters will believe what they want to believe. Apparently I’m playing the “sick girl” for my fiancé’s attention. 
Not to boast or anything but I’m on track to receive a first class honours degree, and because of that 50% off my masters. I’ve also been offered a solo show at an independent gallery in my city. I’ve been asked to go to London to give a talk on the issues of Neoliberalism and how it effects the Fat Body (my dissertation topic) which is a paid opportunity, which will be broadcast on the internet world wide. And nearly 6 years later I still receive plenty of attention from both guys and girls.
I have an abundance of attention in all its forms, I do not need to play the “sick girl” to receive it from my loving fiancé. He loves me for the successful, independent and ambitious woman I am.

If anything my disabilities have held me back. I was on track to attend either Oxford, Goldsmiths or the Slade yet I turned them down for a uni less than an hour away from my parents in case of a medical emergency. Which a year into my studying happened; the first major incident was a brain blood clot but luckily my parents were able to be by my side because of the close distance. 
Just imagine where I would be without my disabilities if I’m already this far despite them. 
Don’t get me wrong I love who I am, disabilities and all. Even on my worst, most crippling days. But this so-called woman who dares tell me I am appropriating illnesses and disabilities for attention needs to check herself. She’s the most toxic person I have ever come across. She’s angry because because she can’t control her son anymore and dares to call me domineering because her son wants to live his life as he pleases, instead of living under her thumb! And yet she has the nerve to judge me when she’s never sat down and taken 5 minutes to get to know me? Honestly. She’s not worth the air she breathes. 
FYI guess what? WE’RE FUCKING HAPPY even after your embarrassing breakdown. Try again, bitch ☺️☺️☺️☺️
Today I was accused of having Munchausen's by my future nothing-in-law. Apparently you can fake a blood clot to the brain and multiple chronic illnesses. But haters will believe what they want to believe. Apparently I’m playing the “sick girl” for my fiancé’s attention. Not to boast or anything but I’m on track to receive a first class honours degree, and because of that 50% off my masters. I’ve also been offered a solo show at an independent gallery in my city. I’ve been asked to go to London to give a talk on the issues of Neoliberalism and how it effects the Fat Body (my dissertation topic) which is a paid opportunity, which will be broadcast on the internet world wide. And nearly 6 years later I still receive plenty of attention from both guys and girls. I have an abundance of attention in all its forms, I do not need to play the “sick girl” to receive it from my loving fiancé. He loves me for the successful, independent and ambitious woman I am. If anything my disabilities have held me back. I was on track to attend either Oxford, Goldsmiths or the Slade yet I turned them down for a uni less than an hour away from my parents in case of a medical emergency. Which a year into my studying happened; the first major incident was a brain blood clot but luckily my parents were able to be by my side because of the close distance. Just imagine where I would be without my disabilities if I’m already this far despite them. Don’t get me wrong I love who I am, disabilities and all. Even on my worst, most crippling days. But this so-called woman who dares tell me I am appropriating illnesses and disabilities for attention needs to check herself. She’s the most toxic person I have ever come across. She’s angry because because she can’t control her son anymore and dares to call me domineering because her son wants to live his life as he pleases, instead of living under her thumb! And yet she has the nerve to judge me when she’s never sat down and taken 5 minutes to get to know me? Honestly. She’s not worth the air she breathes. FYI guess what? WE’RE FUCKING HAPPY even after your embarrassing breakdown. Try again, bitch ☺️☺️☺️☺️
Sunday lunch ☀️ @purcosmetics #trolls palette on eyes, @anastasiabeverlyhills brows, @makeupforeverofficial #ultrahd foundation, @fentybeauty gloss ☀️ #makeuplover #fentybeauty #fenty #purcosmetics #trollspalette #abhbrows #anastasiabeverlyhills #mufe #wheelchairbarbie #wheelchairfashion #wheelchairgirl #wheelchairwoman #wheelchairstyle #weekendadventures