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  • “It is Renal Cell Carcinoma,” he says over the phone. I leaned back in my chair as the news took my breath away. We were told by dozens of doctors this was so statistically impossible. We kept thinking they would say it was benign because it is incredibly rare in kids. The thing that is so surprising is renal cell carcinoma is an adult cancer. After all those seizures, surgeries, hospitalizations and ICU visits we honestly never dreamed he’d have cancer. Not even once.
•
We told very few people. This diagnosis was emotionally complex for us, we were scared and worried.
•
We got the phone call with the official diagnosis in September, right after the hurricane that shut down our city and our lives. There was so much loss and upheaval at that time and on top of that we now had to fight cancer.
•
After tons of tests, second opinions, phone calls and doctors appointments, a surgery date was set to remove the small tumor in Oliver’s left kidney. He had robotic surgery (with a team of two surgeons) to remove it on November 9th. He was brave and resilient as always.
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As of last week, we have been told by the surgeon and oncologist they got clean borders and there is no evidence it had spread! The treatment for renal cell carcinoma is mostly surgical (it doesn’t usually respond well to chemo or radiation), which is why catching it early is the key to survivability. We will have follow up to monitor for recurrence, but due to aggressive annual screening for Tuberous Sclerosis we caught it when it was small.
•
We will share more about Ollie’s childhood cancer journey in time. It has been a great deal to process. During this week of thanksgiving we have overflowing hearts of gratitude. We know many families fighting cancer won’t have the joy of experiencing thanksgiving at home with their children. They won’t get the “all clear” from oncology. This year we will be loving on and celebrating our little turkey more than ever, and giving thanks to God for the great joy we have of being his parents! ❤️ Happy Thanksgiving! •
#childhoodcancer #childhoodcancerawareness #specialneedsjourney #renalcellcarcinoma #iamtsc #tuberoussclerosis #medicallyfragile
  • “It is Renal Cell Carcinoma,” he says over the phone. I leaned back in my chair as the news took my breath away. We were told by dozens of doctors this was so statistically impossible. We kept thinking they would say it was benign because it is incredibly rare in kids. The thing that is so surprising is renal cell carcinoma is an adult cancer. After all those seizures, surgeries, hospitalizations and ICU visits we honestly never dreamed he’d have cancer. Not even once.

    We told very few people. This diagnosis was emotionally complex for us, we were scared and worried.

    We got the phone call with the official diagnosis in September, right after the hurricane that shut down our city and our lives. There was so much loss and upheaval at that time and on top of that we now had to fight cancer.

    After tons of tests, second opinions, phone calls and doctors appointments, a surgery date was set to remove the small tumor in Oliver’s left kidney. He had robotic surgery (with a team of two surgeons) to remove it on November 9th. He was brave and resilient as always.

    As of last week, we have been told by the surgeon and oncologist they got clean borders and there is no evidence it had spread! The treatment for renal cell carcinoma is mostly surgical (it doesn’t usually respond well to chemo or radiation), which is why catching it early is the key to survivability. We will have follow up to monitor for recurrence, but due to aggressive annual screening for Tuberous Sclerosis we caught it when it was small.

    We will share more about Ollie’s childhood cancer journey in time. It has been a great deal to process. During this week of thanksgiving we have overflowing hearts of gratitude. We know many families fighting cancer won’t have the joy of experiencing thanksgiving at home with their children. They won’t get the “all clear” from oncology. This year we will be loving on and celebrating our little turkey more than ever, and giving thanks to God for the great joy we have of being his parents! ❤️ Happy Thanksgiving! •
    #childhoodcancer #childhoodcancerawareness #specialneedsjourney #renalcellcarcinoma #iamtsc #tuberoussclerosis #medicallyfragile
  • 654 126 21 November, 2018

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  • While trying to find a photo for #rarediseaseday today, I found the original blog post, saved to some random archive online, where I shared Rocky’s diagnosis with the world, and the Fight Like Rocky campaign began. I just copied it to my new site, and it’s linked to my bio if you want to read about my youngest child. The funny thing is, every photo I found was of JUST me in the hospital with him. My blog post was almost written as if I was a single mother even four years ago. The only mention of my husband is when I mention the ONE appointment he went to. The use of the word “I” in that post just shocked me. Perhaps I was chosen to be Rocky’s mama so that I could find my strength and realize that you really do need to stand up for those who cannot stand up for themselves. When rising for him, I began to rise for myself.

All the feels today. 
While I hate this rare genetic disease called #tuberoussclerosis, I love this baby of mine with every fiber of my being. #wewillgiveeverythingbutup
  • While trying to find a photo for #rarediseaseday today, I found the original blog post, saved to some random archive online, where I shared Rocky’s diagnosis with the world, and the Fight Like Rocky campaign began. I just copied it to my new site, and it’s linked to my bio if you want to read about my youngest child. The funny thing is, every photo I found was of JUST me in the hospital with him. My blog post was almost written as if I was a single mother even four years ago. The only mention of my husband is when I mention the ONE appointment he went to. The use of the word “I” in that post just shocked me. Perhaps I was chosen to be Rocky’s mama so that I could find my strength and realize that you really do need to stand up for those who cannot stand up for themselves. When rising for him, I began to rise for myself.

    All the feels today.
    While I hate this rare genetic disease called #tuberoussclerosis , I love this baby of mine with every fiber of my being. #wewillgiveeverythingbutup
  • 784 21 28 February, 2019

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  • I really try to enjoy time after hospital as good as I can, before my endurance training starts. No fear, no thoughts about my healthy future - it will come what is intended for me. I know I should not define myself about the disease, but it defines me, in a special why I can’t explain. For example ... Not a day passes where I don't look in the mirror and see the tumors in my face.  When I was a little girl, I knew my face looks differently as other children face. I was offended, embarrassed, sad and wanted everything to make, wanted any pain in buying take just to look "normal". It takes that f** long way to love myself  if you have blemishes for eternity. And now ask me again, why I define myself with TSC. I know I am much more than that rare genetic disease. I had a brain surgery because of an tumor in my head 2007, 2013 and 2018 5 lung surgery’s (one of them without anaesthesia because it will be so much fun they said 😂) and a face treatment since two years with #sirolimus cream. But when I‘ll take a look in the mirror today! I love myself. I appreciate myself. And I am beautiful. With every point in my face and every scar on my body, because I am a  #tscwarrior
  • I really try to enjoy time after hospital as good as I can, before my endurance training starts. No fear, no thoughts about my healthy future - it will come what is intended for me. I know I should not define myself about the disease, but it defines me, in a special why I can’t explain. For example ... Not a day passes where I don't look in the mirror and see the tumors in my face. When I was a little girl, I knew my face looks differently as other children face. I was offended, embarrassed, sad and wanted everything to make, wanted any pain in buying take just to look "normal". It takes that f** long way to love myself if you have blemishes for eternity. And now ask me again, why I define myself with TSC. I know I am much more than that rare genetic disease. I had a brain surgery because of an tumor in my head 2007, 2013 and 2018 5 lung surgery’s (one of them without anaesthesia because it will be so much fun they said 😂) and a face treatment since two years with #sirolimus cream. But when I‘ll take a look in the mirror today! I love myself. I appreciate myself. And I am beautiful. With every point in my face and every scar on my body, because I am a #tscwarrior
  • 564 24 15 July, 2018

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  • A year ago today;
Last year I left Home for school at UO. I ended up getting an MRI here after I had been experiencing tons of unexplainable symptoms, which lead to the diagnosis of Tuberous Sclerosis Complex (rare genetic condition that causes tumors to form in many organs). It turns out i had two (benign) tumors in the ventricles of my brain (fun fact one of them is still in there), and the larger one (a subependymal giant cell astrocytoma), needed to be removed. It was an urgent potentially life threatening situation so I had to withdrawal from fall term at the UO to get the surgery back home in San Diego. 
Long story short, I came home, surgery happened, & then I got some pretty rad staples in my head that were just in time for Halloween ...if you’re wondering YES I did go trick or treating (somehow??lol??) a week after the surgery.
So anyway, recovery was a B, and honestly the whole situation itself was very far from easy. I’d be lying if I said it didn’t change my life completely. But I really did learn a lot from the whole experience about myself and others.
Also I am extremely grateful for Dr. Skaggs here at UO and Dr. Levy and everyone else back home.💙
•
But anyways I don’t wanna sound so serious on this so I thought I’d share some fun exclusive memories! Enjoy lol (First pic is a before & after & the 2nd to last pic is me with my E.T. Finer and a graham cracker... which for some reason is like the only memory I have from being in the hospital after the surgery😂) also P.S. a year late thank you to anyone who called/texted/emailed/visited/etc me during this time, I appreciate you💕 #tuberoussclerosis #tscawareness
  • A year ago today;
    Last year I left Home for school at UO. I ended up getting an MRI here after I had been experiencing tons of unexplainable symptoms, which lead to the diagnosis of Tuberous Sclerosis Complex (rare genetic condition that causes tumors to form in many organs). It turns out i had two (benign) tumors in the ventricles of my brain (fun fact one of them is still in there), and the larger one (a subependymal giant cell astrocytoma), needed to be removed. It was an urgent potentially life threatening situation so I had to withdrawal from fall term at the UO to get the surgery back home in San Diego.
    Long story short, I came home, surgery happened, & then I got some pretty rad staples in my head that were just in time for Halloween ...if you’re wondering YES I did go trick or treating (somehow??lol??) a week after the surgery.
    So anyway, recovery was a B, and honestly the whole situation itself was very far from easy. I’d be lying if I said it didn’t change my life completely. But I really did learn a lot from the whole experience about myself and others.
    Also I am extremely grateful for Dr. Skaggs here at UO and Dr. Levy and everyone else back home.💙

    But anyways I don’t wanna sound so serious on this so I thought I’d share some fun exclusive memories! Enjoy lol (First pic is a before & after & the 2nd to last pic is me with my E.T. Finer and a graham cracker... which for some reason is like the only memory I have from being in the hospital after the surgery😂) also P.S. a year late thank you to anyone who called/texted/emailed/visited/etc me during this time, I appreciate you💕 #tuberoussclerosis #tscawareness
  • 385 78 24 October, 2018
  • Ihr Lieben. Hier ein kleines Update. Am 31.08. wurde ich 28 Jahre alt. Vielen lieben Dank für die Glückwünsche BTW. 🙏🏻 🤗❣️
Das vergangene Jahr hat es mir sehr schwer gemacht mich auf dieses nächste Lebensjahr zu freuen. Es ist viel passiert und ich werde immer sehr nachdenklich, wenn ich die 27 so Revue passieren lasse. Was dieses Jahr wohl für mich bereit hält? Ich möchte reisen so oft es nur geht ✈️ 🌏 und glücklich sein. Noch mehr leben und noch mehr lachen. 24/7. Das ist mein Plan.
Ich bin mittlerweile schon einen Monat ohne #oxicodone 💪🏽 mache fleißig meine Atemphysio mit @naseweis_ die das einfach großartig macht und mir das unglaublich hilft. Und das Beste, ich habe in meiner Physiotherapeutin eine neue Freundin gefunden. ♥️ Es hat mich unglaublich viel Kraft gekostet, aber ich hab mich so gut es ging zurück gekämpft. Ich danke meinen lieben Menschen um mich herum, die mich nie vergessen lassen, dass es sich lohnt zu kämpfen.
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#girl #munich #blogger #fashionista #smile #through #life #love #friendship #back #selfie #carselfie #dinner #shorthair #happy #motivation #instadaily #instagood #l4l #f4f #photography #me #fight #tuberoussclerosis #rehab #wildheart
  • Ihr Lieben. Hier ein kleines Update. Am 31.08. wurde ich 28 Jahre alt. Vielen lieben Dank für die Glückwünsche BTW. 🙏🏻 🤗❣️
    Das vergangene Jahr hat es mir sehr schwer gemacht mich auf dieses nächste Lebensjahr zu freuen. Es ist viel passiert und ich werde immer sehr nachdenklich, wenn ich die 27 so Revue passieren lasse. Was dieses Jahr wohl für mich bereit hält? Ich möchte reisen so oft es nur geht ✈️ 🌏 und glücklich sein. Noch mehr leben und noch mehr lachen. 24/7. Das ist mein Plan.
    Ich bin mittlerweile schon einen Monat ohne #oxicodone 💪🏽 mache fleißig meine Atemphysio mit @naseweis_ die das einfach großartig macht und mir das unglaublich hilft. Und das Beste, ich habe in meiner Physiotherapeutin eine neue Freundin gefunden. ♥️ Es hat mich unglaublich viel Kraft gekostet, aber ich hab mich so gut es ging zurück gekämpft. Ich danke meinen lieben Menschen um mich herum, die mich nie vergessen lassen, dass es sich lohnt zu kämpfen.
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    #girl #munich #blogger #fashionista #smile #through #life #love #friendship #back #selfie #carselfie #dinner #shorthair #happy #motivation #instadaily #instagood #l4l #f4f #photography #me #fight #tuberoussclerosis #rehab #wildheart
  • 274 14 3 September, 2018

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  • Listen to @heatherlens ! Newest episode:
https://www.spreaker.com/episode/17404406

In this episode, Heather shares from her heart about the lonely day when she first received the TSC diagnosis in her then-infant daughter and not wanting to leave the hospital faced with a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of TSC related issues.  She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK.  She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate,  and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love as her guiding force.

@tsalliance @jillwoodworth66 #tuberoussclerosis #march4tscresearch #epilepsy #brainsurgery #infantilespasms #tscomplex #specialneeds #parenting #oklahoma #huffpost #governmentadvocating #grassrootsmovement #podcast #podcasting #mentalhealth #grief #trauma #spreakerpodcast #spotifypodcast #inspiration #family #medicallycomplex #selfhealers #selfcare #spirituality
  • Listen to @heatherlens ! Newest episode:
    https://www.spreaker.com/episode/17404406

    In this episode, Heather shares from her heart about the lonely day when she first received the TSC diagnosis in her then-infant daughter and not wanting to leave the hospital faced with a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love as her guiding force.

    @tsalliance @jillwoodworth66 #tuberoussclerosis #march4tscresearch #epilepsy #brainsurgery #infantilespasms #tscomplex #specialneeds #parenting #oklahoma #huffpost #governmentadvocating #grassrootsmovement #podcast #podcasting #mentalhealth #grief #trauma #spreakerpodcast #spotifypodcast #inspiration #family #medicallycomplex #selfhealers #selfcare #spirituality
  • 40 3 22 March, 2019

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  • On a daily basis, I want to lose my mind when the girls are bickering.  I start to worry that they will grow up to be old and lonely because they cannot get along with other people 😂😂 (it's ok, you can judge my irrational mom brain)  With 5 of them, some days it seems like someone is always unhappy with a sister 🙄

Then moments like these happen and I am reminded that they are such caring and compassionate human beings 😍 
Emmie hates taking her medicine.  Twice a day, we have a discussion about her not wanting to take her meds.  Usually, it ends with Emmie saying "ok" and taking them anyway.  Other times, sisters volunteer to step in to help convince her to take it, otherwise everyone is traumatized when she has to be held down. 
Moments like these help me remember that they will always have each other's backs, no matter what!! #tuberoussclerosis #epilepsy #tscwarrior #epilepsywarrior #stronggirls #specialneedsparenting
  • On a daily basis, I want to lose my mind when the girls are bickering. I start to worry that they will grow up to be old and lonely because they cannot get along with other people 😂😂 (it's ok, you can judge my irrational mom brain) With 5 of them, some days it seems like someone is always unhappy with a sister 🙄

    Then moments like these happen and I am reminded that they are such caring and compassionate human beings 😍
    Emmie hates taking her medicine. Twice a day, we have a discussion about her not wanting to take her meds. Usually, it ends with Emmie saying "ok" and taking them anyway. Other times, sisters volunteer to step in to help convince her to take it, otherwise everyone is traumatized when she has to be held down.
    Moments like these help me remember that they will always have each other's backs, no matter what!! #tuberoussclerosis #epilepsy #tscwarrior #epilepsywarrior #stronggirls #specialneedsparenting
  • 36 2 21 March, 2019
  • Hugo är och kommer alltid vara min lilla Unicorn🦄 (unik och sällsynt)❤️ Från dagen han fick sin diagnos har livet varit både upp och riktigt långt ner och ibland kanske man känner att INGEN verkligen förstår på riktigt det man går igenom men senaste dagarna har vi träffat människor som mer än väl förstår ❤️ Vinterläger med TSC-föreningen!  Underbara dagar med Skidor, bad, bowling och masssor av god mat✨✨ #tscsverige #skidskola #hundfjället #tuberoussclerosis ⛷⛷
  • Hugo är och kommer alltid vara min lilla Unicorn🦄 (unik och sällsynt)❤️ Från dagen han fick sin diagnos har livet varit både upp och riktigt långt ner och ibland kanske man känner att INGEN verkligen förstår på riktigt det man går igenom men senaste dagarna har vi träffat människor som mer än väl förstår ❤️ Vinterläger med TSC-föreningen! Underbara dagar med Skidor, bad, bowling och masssor av god mat✨✨ #tscsverige #skidskola #hundfjället #tuberoussclerosis ⛷⛷
  • 60 16 21 March, 2019
  • 定期腎臓エコーにて、腫瘍が数個見つかった。
前回は無かったから、ここ1年で出来たってことだよな...。
腎臓に出来るのは覚悟してたけど、まさかこんなに早く出てくるとは...かなりショックで診察室で涙止まらず。。
「アフィニトールの使用が適用されます。各腫瘍を縮小させる作用で結果てんかんも抑えられるかもしれない。治療の選択肢が増えたと思って前向きに考えてください。」と先生が言ってくれた。
ゼロにすることは不可能って言われた発作も無くすこと出来るんだろうか。
でも副作用が6割で出るらしく、主に口内炎、嘔吐、肺疾患、とか...
ただでさえ薬漬けなのにって。本当可哀想で泣けてくるよね。
再来週の受診日に薬をどうやっていくか決めるらしい...あーどうなっちゃうんだろー。。
ほんと神様なんか居ないよな、いくら神社で祈ったってこういう結果になるんだから。
.
あとこの前 療育手帳の判定をしてきた。結果はB2の軽度って。
3歳にもなってまともに歩けない、単語20個しか話せない、2語も無理、それなのに軽度?
ほんとにバカにしてる。
児童相談所の判定員が「歩き始めが1歳半で遅かったので今も歩けないんでしょうきっと」って、本当ブチ切れそうになった。
歩き始め遅くたって3歳でまともに歩けない子なんている??
これで軽度判定って普通なの???
もう一回聞いてみようかなぁ...。
てかほんと完全に愚痴だなこれ笑
こんな暗い投稿すまんな!でも書いてスッキリした!
写真は寝癖がひどい娘。
#tuberoussclerosis #結節性硬化症 #難治性てんかん #アフィニトール #腎臓腫瘍 #脳腫瘍 #てんかん #療育手帳 #Braintumor #Everolimus #epilepsy #kidneydisease
  • 定期腎臓エコーにて、腫瘍が数個見つかった。
    前回は無かったから、ここ1年で出来たってことだよな...。
    腎臓に出来るのは覚悟してたけど、まさかこんなに早く出てくるとは...かなりショックで診察室で涙止まらず。。
    「アフィニトールの使用が適用されます。各腫瘍を縮小させる作用で結果てんかんも抑えられるかもしれない。治療の選択肢が増えたと思って前向きに考えてください。」と先生が言ってくれた。
    ゼロにすることは不可能って言われた発作も無くすこと出来るんだろうか。
    でも副作用が6割で出るらしく、主に口内炎、嘔吐、肺疾患、とか...
    ただでさえ薬漬けなのにって。本当可哀想で泣けてくるよね。
    再来週の受診日に薬をどうやっていくか決めるらしい...あーどうなっちゃうんだろー。。
    ほんと神様なんか居ないよな、いくら神社で祈ったってこういう結果になるんだから。
    .
    あとこの前 療育手帳の判定をしてきた。結果はB2の軽度って。
    3歳にもなってまともに歩けない、単語20個しか話せない、2語も無理、それなのに軽度?
    ほんとにバカにしてる。
    児童相談所の判定員が「歩き始めが1歳半で遅かったので今も歩けないんでしょうきっと」って、本当ブチ切れそうになった。
    歩き始め遅くたって3歳でまともに歩けない子なんている??
    これで軽度判定って普通なの???
    もう一回聞いてみようかなぁ...。
    てかほんと完全に愚痴だなこれ笑
    こんな暗い投稿すまんな!でも書いてスッキリした!
    写真は寝癖がひどい娘。
    #tuberoussclerosis #結節性硬化症 #難治性てんかん #アフィニトール #腎臓腫瘍 #脳腫瘍 #てんかん #療育手帳 #Braintumor #Everolimus #epilepsy #kidneydisease
  • 11 2 20 March, 2019

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  • Look what has come through the post! Our fantastic #Tea&SCones for TSC 2019 event packs! 🎂🍰 You can read all about this year's baking bonanza at http://www.tuberous-sclerosis.org/tea-scones-2019 or email fundraising@tuberous-sclerosis.org to order your pack! #tuberoussclerosis
  • Look what has come through the post! Our fantastic #Tea &SCones for TSC 2019 event packs! 🎂🍰 You can read all about this year's baking bonanza at http://www.tuberous-sclerosis.org/tea-scones-2019 or email fundraising@tuberous-sclerosis.org to order your pack! #tuberoussclerosis
  • 7 1 20 March, 2019
  • This is me. 
This is me smiling, travelling around America and 'looking healthy and fine'. This is also me walking around with high intercranial pressure, active pappiledema and chiari. Completely unaware. This is me managing headaches with painkillers when they come on. 
I have never felt the term 'invisible illness' be so relatable. 
What I have heard the most whilst being examined by various consultants is the phrase 'You look fine'. The tests say you have high pressure, chiari and swollen optic discs.. but you 'look fine'. Side note - I have also recently been diagnosed with mild Tuberous sclerosis. I dont have any learning difficulties or epilepy however I have a shagreen patch on my back and multiple  calcifications on my brain. They also said for this that i dont 'look' the type to have the condition. 'You look fine' however again ct scans and visual skin examinations have  pieced this all together too.

I honestly dont know what you are supposed to look like to be unwell or to have certain conditions.  Alot of these conditions the deterioration starts internally first. The time you usually start to physically start to deteriate is when its too late. Sometimes the damage is never visible on tbe outside. Your appearance does not reflect your quality of life either. 
#medicalconditions #disease #invisibleillness #mentalhealth #tuberoussclerosis #chiarimalformation1 #chiariawareness #pappiledema #ih #ihawareness #health #blog #healthblog #healthy #neurology #illness #anxiety #intercranialpressure #chronicillness #life #medical #journey #followme #me #mentalhealth
  • This is me.
    This is me smiling, travelling around America and 'looking healthy and fine'. This is also me walking around with high intercranial pressure, active pappiledema and chiari. Completely unaware. This is me managing headaches with painkillers when they come on.
    I have never felt the term 'invisible illness' be so relatable.
    What I have heard the most whilst being examined by various consultants is the phrase 'You look fine'. The tests say you have high pressure, chiari and swollen optic discs.. but you 'look fine'. Side note - I have also recently been diagnosed with mild Tuberous sclerosis. I dont have any learning difficulties or epilepy however I have a shagreen patch on my back and multiple calcifications on my brain. They also said for this that i dont 'look' the type to have the condition. 'You look fine' however again ct scans and visual skin examinations have pieced this all together too.

    I honestly dont know what you are supposed to look like to be unwell or to have certain conditions. Alot of these conditions the deterioration starts internally first. The time you usually start to physically start to deteriate is when its too late. Sometimes the damage is never visible on tbe outside. Your appearance does not reflect your quality of life either.
    #medicalconditions #disease #invisibleillness #mentalhealth #tuberoussclerosis #chiarimalformation1 #chiariawareness #pappiledema #ih #ihawareness #health #blog #healthblog #healthy #neurology #illness #anxiety #intercranialpressure #chronicillness #life #medical #journey #followme #me #mentalhealth
  • 15 1 20 March, 2019
  • Conners new ride! 💗
Yes he already figured out how to get his arms out of the straps 🤣🤦🏼‍♀️
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#newwheelchair #tuberoussclerosis
  • Conners new ride! 💗
    Yes he already figured out how to get his arms out of the straps 🤣🤦🏼‍♀️
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    #newwheelchair #tuberoussclerosis
  • 107 13 19 March, 2019

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  • Zoey had a seizure during her nap today at 3pm. She needed extra medication to stop the seizure and it finally stopped at 3:44. She’s on a Bi Pap machine helping her breath. She’s already trying to breath on her own hence all the beeping we’ve been listening to for a hour. Madison is making the most of the afternoon, playing some ipad, using the tiles on the floor as hopscotch game and munching on goldfish. Hoping zoey wakes up soon so we can the mask off. #tuberoussclerosis #tuberoussclerosiscomplex #tsc #nonverbal #epilepsy #zoeystrong #siblings #bipap #makethemostofit #wegotthis
  • Zoey had a seizure during her nap today at 3pm. She needed extra medication to stop the seizure and it finally stopped at 3:44. She’s on a Bi Pap machine helping her breath. She’s already trying to breath on her own hence all the beeping we’ve been listening to for a hour. Madison is making the most of the afternoon, playing some ipad, using the tiles on the floor as hopscotch game and munching on goldfish. Hoping zoey wakes up soon so we can the mask off. #tuberoussclerosis #tuberoussclerosiscomplex #tsc #nonverbal #epilepsy #zoeystrong #siblings #bipap #makethemostofit #wegotthis
  • 19 4 17 March, 2019
  • F U C K  S E I Z U R E S 😡

In angry mode at the moment, angry that my baby girl is in hospital yet again due to a status seizure. 
We’d nipped into London for an afternoon out, sat down in Starbucks when Nola began having a seizure. I had a feeling or an intuition it was going to happen. She had been a bit off since yesterday morning, snotty nose and not wanting to eat her lunch.
Thankfully across the road from Starbucks was paediatric A&E so we just walked straight in.
It was a good 20mins+ before any rescue meds were given. Buccal midazolam didn’t cut it so 10mins or so later she was given lorazepam. Which eventually settled things although I’m not 100% convinced she was completely out of a seizure because of how her eyes looked. The medical staff were ‘confident’ the seizure had stopped because her second lot of blood gases came back fine. Who knows? I know the professionals are not always right!
She is currently snoozing after having an ok night but had a slightly raised temperature and fast heartbeat earlier. Fingers crossed 🤞🏻she can come home later today!
#fuckseizures #fuckepilepsy #statusepilepticus #NolasJourney #iamtsc #tuberoussclerosis #tuberoussclerosiscomplex #baby #tuberoussclerosisawareness #epilepsywarrior #babygirl #epilepsyawareness #specialneeds #specialneedsparents #momblog #channelmumvillage #mumlife #honestparenting #mumblog
  • F U C K S E I Z U R E S 😡

    In angry mode at the moment, angry that my baby girl is in hospital yet again due to a status seizure.
    We’d nipped into London for an afternoon out, sat down in Starbucks when Nola began having a seizure. I had a feeling or an intuition it was going to happen. She had been a bit off since yesterday morning, snotty nose and not wanting to eat her lunch.
    Thankfully across the road from Starbucks was paediatric A&E so we just walked straight in.
    It was a good 20mins+ before any rescue meds were given. Buccal midazolam didn’t cut it so 10mins or so later she was given lorazepam. Which eventually settled things although I’m not 100% convinced she was completely out of a seizure because of how her eyes looked. The medical staff were ‘confident’ the seizure had stopped because her second lot of blood gases came back fine. Who knows? I know the professionals are not always right!
    She is currently snoozing after having an ok night but had a slightly raised temperature and fast heartbeat earlier. Fingers crossed 🤞🏻she can come home later today!
    #fuckseizures #fuckepilepsy #statusepilepticus #NolasJourney #iamtsc #tuberoussclerosis #tuberoussclerosiscomplex #baby #tuberoussclerosisawareness #epilepsywarrior #babygirl #epilepsyawareness #specialneeds #specialneedsparents #momblog #channelmumvillage #mumlife #honestparenting #mumblog
  • 75 50 17 March, 2019
  • 娘ちゃんのお薬が薬局からクール便で届いたぞい。さて今日の夜から使うけど効果はどーかなぁ。美少女だからブツブツ可哀想だもんね。。
つーかこの前の定期のMRIせっかく寝たのに空いてなくて待たされて起きちゃったから次回になった。ひどくない??いつもなら2枠取っておいてくれるのに。。無駄に眠剤入れたくないよ〜...って愚痴ったりして..。
なんかもう病気のことはオープンにすることにした。別にいいや、隠すことないなぁって。
今3歳で抱っこ紐してるんだけど知らない人からジロジロ見られたり、年配の人からは「まだ抱っこなの?おかしいわよ〜笑」って言われる。でも「病気なんで!うまく歩けないんです!」って堂々と言うことにしたの。
#結節性硬化症 #ラパマイシン #ラパリムス #tuberoussclerosis
  • 娘ちゃんのお薬が薬局からクール便で届いたぞい。さて今日の夜から使うけど効果はどーかなぁ。美少女だからブツブツ可哀想だもんね。。
    つーかこの前の定期のMRIせっかく寝たのに空いてなくて待たされて起きちゃったから次回になった。ひどくない??いつもなら2枠取っておいてくれるのに。。無駄に眠剤入れたくないよ〜...って愚痴ったりして..。
    なんかもう病気のことはオープンにすることにした。別にいいや、隠すことないなぁって。
    今3歳で抱っこ紐してるんだけど知らない人からジロジロ見られたり、年配の人からは「まだ抱っこなの?おかしいわよ〜笑」って言われる。でも「病気なんで!うまく歩けないんです!」って堂々と言うことにしたの。
    #結節性硬化症 #ラパマイシン #ラパリムス #tuberoussclerosis
  • 7 2 15 March, 2019
  • Arrow has been seizure free for 2 years. There really aren’t any words I could string together to capture how this makes me feel or how grateful I am for God’s hand and favor on his life. It often brings me to tears. .
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These are very good days. .
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May we never forget that on our best days, we still need God as desperately as we did on our worst. Amen.
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#tsc #tuberoussclerosis #ourarrowpointsup #tscwarrior #seizurefree #godsfavor #answeredprayers
  • Arrow has been seizure free for 2 years. There really aren’t any words I could string together to capture how this makes me feel or how grateful I am for God’s hand and favor on his life. It often brings me to tears. .
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    These are very good days. .
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    May we never forget that on our best days, we still need God as desperately as we did on our worst. Amen.
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    #tsc #tuberoussclerosis #ourarrowpointsup #tscwarrior #seizurefree #godsfavor #answeredprayers
  • 75 1 14 March, 2019
  • Guten Morgen ☀️ wir haben tief und fest geschlafen .. Luki geht es soweit gut ... den Verschluckungs-/Erstickungsanfall haben wir gut gemeistert. Da entscheidet man sich einen Hund zu adoptieren und kauft ein Bettchen, Spielsachen, einen Autositz, nach Lavendel riechende Poop-Beutel und macht sich über gutes Futter schlau, und dann ist der Hund zuhause und von einer auf die andere Sekunde stehst da wie ein Ochs vor‘m Berg und weißt nicht wie Du dem kleinen helfen kannst. Ich hab erst danach gemerkt, als der Kleine wieder normal geschnauft hat und freudig den Salat vom Boden aufgeklaubt hat, dass meine Backen nass waren vor Tränen. Auf sowas kann man sich eben nicht vorbereiten und ich hoffe, dass der kleine Luki ein langes Leben bei mir hat - auch wenn die Muddi aussieht, als hätte sie Borderline. (Warum ich jetzt von mir in der 3. Person spreche, weiß ich selbst nicht 🤷🏽‍♀️) .
Euch wünsche ich einen tollen Tag meine Lieben 💕
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_______________________
#girl #dogmom #dogsofinstagram #cavalier #cavalierkingcharles #ckcs #puppy #goodmorning #instadaily #instagood #instastory #blogger #munich #cuddle #followme #igers #igersgermany #instapuppy #tuberoussclerosis #tuberoussclerosiscomplex #blenheim #dog
  • Guten Morgen ☀️ wir haben tief und fest geschlafen .. Luki geht es soweit gut ... den Verschluckungs-/Erstickungsanfall haben wir gut gemeistert. Da entscheidet man sich einen Hund zu adoptieren und kauft ein Bettchen, Spielsachen, einen Autositz, nach Lavendel riechende Poop-Beutel und macht sich über gutes Futter schlau, und dann ist der Hund zuhause und von einer auf die andere Sekunde stehst da wie ein Ochs vor‘m Berg und weißt nicht wie Du dem kleinen helfen kannst. Ich hab erst danach gemerkt, als der Kleine wieder normal geschnauft hat und freudig den Salat vom Boden aufgeklaubt hat, dass meine Backen nass waren vor Tränen. Auf sowas kann man sich eben nicht vorbereiten und ich hoffe, dass der kleine Luki ein langes Leben bei mir hat - auch wenn die Muddi aussieht, als hätte sie Borderline. (Warum ich jetzt von mir in der 3. Person spreche, weiß ich selbst nicht 🤷🏽‍♀️) .
    Euch wünsche ich einen tollen Tag meine Lieben 💕
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    _______________________
    #girl #dogmom #dogsofinstagram #cavalier #cavalierkingcharles #ckcs #puppy #goodmorning #instadaily #instagood #instastory #blogger #munich #cuddle #followme #igers #igersgermany #instapuppy #tuberoussclerosis #tuberoussclerosiscomplex #blenheim #dog
  • 112 5 14 March, 2019
  • A lifelong runner, I don't take for granted this ability with which I've been granted to run intensely for many years. The intensity of TSC care & management demands almost constant vigilance and blocking off time to work out or exercise in whatever way can often seem selfish, indulgent and extreme. However, I highly recommend the practice. We carry around the weight of our kids entire medical, psychological,  physical history, into the present, in order to best manage their care, and we are often on standby for an emergency at almost any time. 
If I didn't get a bit of a time out and head space almost daily, I don't think I'd have survived and been able to stay sane and continue advocacy as well as managing daily issues that arise. 
Don't be afraid to find creative ways to sweat. Even if it's 10 min.  Commit to blocking off the time, even if it's a different time every day. Start slowly and build up. You can do it and it will help! Pressure relief valve for sure! 
Also, keep tuning in for more on TSC Talks...#march4tscresearch to be discussed with key influencers on upcoming episode!
https://www.spreaker.com/show/1666046

#tuberoussclerosis #tuesdaymotivation #tsctalks #running #runningasmeditation #march4tscresearch #podcasting #podcast #specialneedsparent #epilepsy #autism #mentalhealth #mentalhealthawareness #ptsd #trauma #runner @joerogan @the.holistic.psychologist @tsalliance #justdoit✔️
  • A lifelong runner, I don't take for granted this ability with which I've been granted to run intensely for many years. The intensity of TSC care & management demands almost constant vigilance and blocking off time to work out or exercise in whatever way can often seem selfish, indulgent and extreme. However, I highly recommend the practice. We carry around the weight of our kids entire medical, psychological, physical history, into the present, in order to best manage their care, and we are often on standby for an emergency at almost any time.
    If I didn't get a bit of a time out and head space almost daily, I don't think I'd have survived and been able to stay sane and continue advocacy as well as managing daily issues that arise.
    Don't be afraid to find creative ways to sweat. Even if it's 10 min. Commit to blocking off the time, even if it's a different time every day. Start slowly and build up. You can do it and it will help! Pressure relief valve for sure!
    Also, keep tuning in for more on TSC Talks... #march4tscresearch to be discussed with key influencers on upcoming episode!
    https://www.spreaker.com/show/1666046

    #tuberoussclerosis #tuesdaymotivation #tsctalks #running #runningasmeditation #march4tscresearch #podcasting #podcast #specialneedsparent #epilepsy #autism #mentalhealth #mentalhealthawareness #ptsd #trauma #runner @joerogan @the.holistic.psychologist @tsalliance #justdoit ✔️
  • 35 13 12 March, 2019
  • Tanya, you are this teeny human being with a loud powerful opinion. How has mental health affected your life? 🎙
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Mental Health didn’t affect me personally until about my 20’s when I was diagnosed with a rare multi-system genetic disease called Tuberous Sclerosis. .
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After trying different medications we found one suitable for me, unfortunately the side effects were TERRIBLE. My skin broke out, I was getting mouth sores, I could barely eat, and my menstrual cycle was SOO out of whack. I was anxious, depressed, I had body pains all over and was always tired. I was very depressed thinking I was broken and that no one could love someone with “issues”. I became introverted and hid away dropping all my passions. I was closing off to the world and becoming very bitter. .
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I woke up one day and told myself “Tanya, your illness does not define you. Don’t let it win”. That was the day everything changed. 
I quit my bartending job, I got back into the dance studio, and told my agent I was ready for action! I started my Yoga Teacher Training to get me back into a healthy mind. I changed my eating habits, my lifestyle choices… and I met the man of my dreams! 
He took me in with open arms and an open heart and said “I want to fix this with you.” He made me realize how important self-care is, because it can REALLY change you. I have seen firsthand how it can heal you, clear your mind and give you freedom. .
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I am now off my meds and have been seizure free for almost 3 years. I look back and shake my head sometimes, because honestly why didn’t I take care of myself earlier? That’s what mental health does; it makes us blind to the beauty of life. It is a sad and scary place to be. I pray anyone who is sitting in the darkness finds their light, because life can be so beautiful when we have the right support system around us. If you ever need to talk – I am here.
  • Tanya, you are this teeny human being with a loud powerful opinion. How has mental health affected your life? 🎙
    ⠀⠀
    Mental Health didn’t affect me personally until about my 20’s when I was diagnosed with a rare multi-system genetic disease called Tuberous Sclerosis. .
    .
    After trying different medications we found one suitable for me, unfortunately the side effects were TERRIBLE. My skin broke out, I was getting mouth sores, I could barely eat, and my menstrual cycle was SOO out of whack. I was anxious, depressed, I had body pains all over and was always tired. I was very depressed thinking I was broken and that no one could love someone with “issues”. I became introverted and hid away dropping all my passions. I was closing off to the world and becoming very bitter. .
    .
    I woke up one day and told myself “Tanya, your illness does not define you. Don’t let it win”. That was the day everything changed.
    I quit my bartending job, I got back into the dance studio, and told my agent I was ready for action! I started my Yoga Teacher Training to get me back into a healthy mind. I changed my eating habits, my lifestyle choices… and I met the man of my dreams!
    He took me in with open arms and an open heart and said “I want to fix this with you.” He made me realize how important self-care is, because it can REALLY change you. I have seen firsthand how it can heal you, clear your mind and give you freedom. .
    .
    I am now off my meds and have been seizure free for almost 3 years. I look back and shake my head sometimes, because honestly why didn’t I take care of myself earlier? That’s what mental health does; it makes us blind to the beauty of life. It is a sad and scary place to be. I pray anyone who is sitting in the darkness finds their light, because life can be so beautiful when we have the right support system around us. If you ever need to talk – I am here.
  • 35 11 11 March, 2019
  • **Good news**
Over summer Matt was hit with abscesses and Shingles because his system was run down, at the same time he stopped taking his meds (mild chemo) to let his body heal, and in the process his kidney function has improved from 27% to 34%. Doctor happy with keeping him on a reduced dose of 10mg instead of 15mg. Tumours are slow growing, the meds aren’t effective on shrinking anymore so dropping the meds to prolong the kidney function won’t make a significant change to the growth pattern. We pretty much gained what we lost over the last year so that’s fantastic and totally unexpected. What a great start to 2019 ❤️ #angelswatchingoutforus #tuberoussclerosis #goodnews #wegotthis
  • **Good news**
    Over summer Matt was hit with abscesses and Shingles because his system was run down, at the same time he stopped taking his meds (mild chemo) to let his body heal, and in the process his kidney function has improved from 27% to 34%. Doctor happy with keeping him on a reduced dose of 10mg instead of 15mg. Tumours are slow growing, the meds aren’t effective on shrinking anymore so dropping the meds to prolong the kidney function won’t make a significant change to the growth pattern. We pretty much gained what we lost over the last year so that’s fantastic and totally unexpected. What a great start to 2019 ❤️ #angelswatchingoutforus #tuberoussclerosis #goodnews #wegotthis
  • 65 8 11 March, 2019