#tuberoussclerosiscomplex Instagram Photos & Videos

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  • We are evacuating to the most magical place on earth, Disney World!!! ✨ One of the reasons we decided to go is at the end of this month Ollie has a biopsy on a very worrisome spot on his left kidney. A few days after the procedure we will hear the results and figure out next steps and our plan. Lord knows I LOVE a plan! Right now it is too time consuming to explain all the possible outcomes of the biopsy, because it would take forever and it ranges from no big deal to quite serious.
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We do ask for your prayers for us as we walk through this new challenge. We have had a lot of practice at this medically fragile  life, but it is always hard to see Ollie go through so much. And of course prayers for dealing with the aftermath of #hurricaneflorence (at our home and real estate business). And finally, for a fun filled long weekend of magical experiences with our favorite boy. ✨🏰✨
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We have learned that when things are out of our control (hurricanes and/or a scary medical issue) we can do a few things. Reciting the serenity prayer always helps. Always. Living the beautiful life God has given us *right now* with gusto and JOY tends to keep negativity at bay. And finally we ask God for eyes to see opportunities to experience joy, giggles, smiles, and hope... even in the midst of life altering storms.
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THE SERENITY PRAYER (in case you need it today as much as we do 💕)
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God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference 🙏🏼
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#hurricaneflorence #goingtodisney #hurricanelane #evacuate #autismawarness #iamtsc #giveeverythingbutup #mitochondrialdisease #epilepsyawareness #medicallyfragile #specialkidsrock #tuberoussclerosiscomplex #specialneedsmom #momlife #specialneedsfamily @waltdisneyworld
  • We are evacuating to the most magical place on earth, Disney World!!! ✨ One of the reasons we decided to go is at the end of this month Ollie has a biopsy on a very worrisome spot on his left kidney. A few days after the procedure we will hear the results and figure out next steps and our plan. Lord knows I LOVE a plan! Right now it is too time consuming to explain all the possible outcomes of the biopsy, because it would take forever and it ranges from no big deal to quite serious.

    We do ask for your prayers for us as we walk through this new challenge. We have had a lot of practice at this medically fragile life, but it is always hard to see Ollie go through so much. And of course prayers for dealing with the aftermath of #hurricaneflorence (at our home and real estate business). And finally, for a fun filled long weekend of magical experiences with our favorite boy. ✨🏰✨

    We have learned that when things are out of our control (hurricanes and/or a scary medical issue) we can do a few things. Reciting the serenity prayer always helps. Always. Living the beautiful life God has given us *right now* with gusto and JOY tends to keep negativity at bay. And finally we ask God for eyes to see opportunities to experience joy, giggles, smiles, and hope... even in the midst of life altering storms.

    THE SERENITY PRAYER (in case you need it today as much as we do 💕)

    God, grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    And wisdom to know the difference 🙏🏼






    #hurricaneflorence #goingtodisney #hurricanelane #evacuate #autismawarness #iamtsc #giveeverythingbutup #mitochondrialdisease #epilepsyawareness #medicallyfragile #specialkidsrock #tuberoussclerosiscomplex #specialneedsmom #momlife #specialneedsfamily @waltdisneyworld
  • 276 36 11 September, 2018
  • Today was Rare Disease Day. As many of you know, Brielle was diagnosed with a rare genetic disease called Tuberous Sclerosis Complex (TSC). This disease causes benign tumors to grow in various organs including the brain, heart, kidneys, and lungs. Epilepsy and Autism are common among those with Tuberous Sclerosis Complex. Brielle has been having seizures since she was about 6 months old and we haven’t found seizure control yet but we are working to get them under control. I’m hopeful that day will come soon. If you’d like to learn more about Tuberous Sclerosis, I’ll leave a link in my bio to the Tuberous Sclerosis Alliance website
  • Today was Rare Disease Day. As many of you know, Brielle was diagnosed with a rare genetic disease called Tuberous Sclerosis Complex (TSC). This disease causes benign tumors to grow in various organs including the brain, heart, kidneys, and lungs. Epilepsy and Autism are common among those with Tuberous Sclerosis Complex. Brielle has been having seizures since she was about 6 months old and we haven’t found seizure control yet but we are working to get them under control. I’m hopeful that day will come soon. If you’d like to learn more about Tuberous Sclerosis, I’ll leave a link in my bio to the Tuberous Sclerosis Alliance website
  • 116 4 1 March, 2019
  • Today is Tuberous Sclerosis Complex Global Awareness Day. Today we hope and pray for a CURE. 🙏🏼
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This photo and the corresponding blog post (link in bio) are from 7 years ago. It is about how TSC is a minefield. You never know what organ system is going to be affected next. After all these years (and all that has happened)...it is still such a good analogy.
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As I re-read it all these years later, the part about allowing others onto our minefield makes my eyes fill with tears. We have been so loved and supported by our friends and family, for years and years. How could we ever adequately thank you for being our bomb squad for almost a decade. 💕 We are forever grateful that you have taught us that we are never alone and always loved.
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Perhaps one can only learn these deep life lessons in a war zone. Comfort is often the enemy of growth. 
#giveeverythingbutup
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 #iamtsc #TSCGlobalAwarenessDay #tuberoussclerosis #tuberoussclerosiscomplex @tsalliance
  • Today is Tuberous Sclerosis Complex Global Awareness Day. Today we hope and pray for a CURE. 🙏🏼

    This photo and the corresponding blog post (link in bio) are from 7 years ago. It is about how TSC is a minefield. You never know what organ system is going to be affected next. After all these years (and all that has happened)...it is still such a good analogy.

    As I re-read it all these years later, the part about allowing others onto our minefield makes my eyes fill with tears. We have been so loved and supported by our friends and family, for years and years. How could we ever adequately thank you for being our bomb squad for almost a decade. 💕 We are forever grateful that you have taught us that we are never alone and always loved.

    Perhaps one can only learn these deep life lessons in a war zone. Comfort is often the enemy of growth.
    #giveeverythingbutup

    #iamtsc #TSCGlobalAwarenessDay #tuberoussclerosis #tuberoussclerosiscomplex @tsalliance
  • 272 6 15 May, 2018
  • 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
  • 566 24 15 July, 2018

Latest Instagram Posts

  • At one point, it seemed like Julie was about to start talking. She was about 4 years old. She started humming, “This old man,” and the ABC song. But when I came back from Iraq she wasn’t humming anymore and I was teaching her everything all over again but she never hummed again. It makes me so sad when I hear this song. Julie’s song. #tsc #tuberoussclerosiscomplex #autism #epilepsy #juliessong #teamjujubeans
  • At one point, it seemed like Julie was about to start talking. She was about 4 years old. She started humming, “This old man,” and the ABC song. But when I came back from Iraq she wasn’t humming anymore and I was teaching her everything all over again but she never hummed again. It makes me so sad when I hear this song. Julie’s song. #tsc #tuberoussclerosiscomplex #autism #epilepsy #juliessong #teamjujubeans
  • 17 0 20 April, 2019
  • Me with drug side effects! Lol! The famous painting by E. Munch . So, as an update for those who asked - Everolimus certainly affects my immune system and I get a reoccurring sore throat ( thankfully don’t have my tonsils) sore spots on my body ( I’m so vain! )But one looked like a second chin and HURT :( Thankfully the antibiotics I was taking for my sinuses helped clear it) I keep getting a nose bleed but not sure if that’s connected. All in all the effects are liveable but I certainly have had to slow down a bit - I’m hoping the body will balance out a bit. On an note ... it means the drug is doing something, so let’s hope it gives that cheeky AML a blast of its power :D best wishes to all. #everolimus #positivevibes #tuberoussclerosiscomplex #tuberoussclerosisawareness #fulllife #epilepsyawareness #epilepsy #epilepsywarrior #tsa #raredisease
  • Me with drug side effects! Lol! The famous painting by E. Munch . So, as an update for those who asked - Everolimus certainly affects my immune system and I get a reoccurring sore throat ( thankfully don’t have my tonsils) sore spots on my body ( I’m so vain! )But one looked like a second chin and HURT :( Thankfully the antibiotics I was taking for my sinuses helped clear it) I keep getting a nose bleed but not sure if that’s connected. All in all the effects are liveable but I certainly have had to slow down a bit - I’m hoping the body will balance out a bit. On an note ... it means the drug is doing something, so let’s hope it gives that cheeky AML a blast of its power :D best wishes to all. #everolimus #positivevibes #tuberoussclerosiscomplex #tuberoussclerosisawareness #fulllife #epilepsyawareness #epilepsy #epilepsywarrior #tsa #raredisease
  • 22 1 14 April, 2019
  • A fun hour of playing with this months @boxycharm April 2019 #boxychella box of goodies! 🔥

How do you think I did? 
If you’d like to see more of these kinds of videos, let me know in the comments! ⬇️⬇️
  • A fun hour of playing with this months @boxycharm April 2019 #boxychella box of goodies! 🔥

    How do you think I did?
    If you’d like to see more of these kinds of videos, let me know in the comments! ⬇️⬇️
  • 49 2 13 April, 2019
  • Yesterday I had an MRI done, got in a good 25 minute nap (I’m prob the only one who can sleep in those things 🤣) and I got my results back today. It showed a 1.4cm SEGA (subependymal giant cell astrocytoma) tumor. On the small side thankfully-and NOT cancerous it’s just a byproduct of tuberous sclerosis, but it’s going to need monitoring and I’m most likely going to be put on a medication to keep it from growing (and hopefully shrink it completely) and also thankful I have an answer to where my headaches on that side of my head are coming from! .
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Invisible illnesses are funny like that. I may  look perfectly healthy on the outside, but on the inside it’s quite a different story! However I’m staying on the positive side, and being thankful to have such great doctors on my side to give me the best care possible (one of them being my husband!) and between this SEGA, and the AMLs in my kidneys; my hope is to get put on this medication that will take care of them both at the same time!! 🤞🏻
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No need to worry about me, I’m gonna be just fine ☺️ this disease hasn’t bested me yet in my 31 years of life, and im not about to let it start now 🖤
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#tuberoussclerosis #tuberoussclerosiscomplex #tscawareness #tscalliance #skinpositivity #angiofibroma #invisibleillnesses #invisibleillnessawareness #invisibleillnesswarrior #lifepositivity #positivemindsets #rarediseases #unconventionalbeauty #uniquebeauty #supermoms #lifeblogger #selfadvocacy
  • Yesterday I had an MRI done, got in a good 25 minute nap (I’m prob the only one who can sleep in those things 🤣) and I got my results back today. It showed a 1.4cm SEGA (subependymal giant cell astrocytoma) tumor. On the small side thankfully-and NOT cancerous it’s just a byproduct of tuberous sclerosis, but it’s going to need monitoring and I’m most likely going to be put on a medication to keep it from growing (and hopefully shrink it completely) and also thankful I have an answer to where my headaches on that side of my head are coming from! .
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    Invisible illnesses are funny like that. I may look perfectly healthy on the outside, but on the inside it’s quite a different story! However I’m staying on the positive side, and being thankful to have such great doctors on my side to give me the best care possible (one of them being my husband!) and between this SEGA, and the AMLs in my kidneys; my hope is to get put on this medication that will take care of them both at the same time!! 🤞🏻
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    No need to worry about me, I’m gonna be just fine ☺️ this disease hasn’t bested me yet in my 31 years of life, and im not about to let it start now 🖤
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    #tuberoussclerosis #tuberoussclerosiscomplex #tscawareness #tscalliance #skinpositivity #angiofibroma #invisibleillnesses #invisibleillnessawareness #invisibleillnesswarrior #lifepositivity #positivemindsets #rarediseases #unconventionalbeauty #uniquebeauty #supermoms #lifeblogger #selfadvocacy
  • 16 0 12 April, 2019