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    Tough time

    It's been a few weeks since I posted. I've been to the doctor's and need to see additional ones and have imaging on my tumors. Having a few new symptoms and more pain. It's frustrating and hard. I can't work right now but I was also told that I'd need a great lawyer to get on disability even though I have a genetic disorder causing bad chronic pain. I want to work and be productive but am having a really hard time with even getting going most days. I'm trying to stay positive but traumatic things from my past have reared their ugly head. And im struggling to sleep well. Also found out my dad has sarcoma. If anyone has advice on disability, pain relief, healing practices, or sleep practices please share. I'd truly appreciate it. Or even tell me something good. I'd honestly really just like to even talk about random stuff, too. Have good day everyone

    #NeurofibromatosisType1 #NFType1 #Neurofibromatosis #NF #NF1 #Depression #Anxiety #ChronicIllness #ChronicPain #Tumors #braintumors

    3 comments
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    Health and a romantic relationship

    Does anyone worry about finding an understanding and accepting life partner? If so, what's your primary concern? I worry about it sometimes. I'm (mostly, lol) confident in what I want and my values but worry someone won't be able to endure years of my chronic illness and mental health struggles (currently seeing a therapist which has been an incredible experience). Grateful for this space to connect. Have a great day everyone!
    #ChronicIllness #ChronicPain #MentalHealth #NF1 #NeurofibromatosisType1 #Neurofibromatosis

    4 comments
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    Finding something positive

    What is something positive in your life today? I can get trapped in a negative cycle on a bad pain and/or headspace day. Today is not great, but my positive things for today are my parents and hearing the birds sing outside. Sending everyone good vibes and positive thoughts.

    #NeurofibromatosisType1 #ChronicPain #NF1 #ChronicIllness #Neurofibromatosis #DepressiveDisorders

    11 comments
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    NF awareness day thoughts

    Today is World NF Awareness Day. It's for Neurofibromatosis. I have type 1 and I am reflecting on it today. In some ways it's tough because I am just opening up about it and I don't like thinking I have a disease. I'm working on accepting that term even though I've had NF 1 my whole life. I've had chronic pain from it since August 2013. I hurt everyday. Some days the pain is less others it's off the charts. Today being the awareness day for NF 1, I am in the feels. A mix of many emotions. I'm okay though. I've enjoyed this space so far, thank you all. Have a great day!

    #NF1 #NeurofibromatosisType1 #Neurofibromatosis #ChronicPain

    7 comments
    Post

    Happy Saturday! Does anyone find it difficult to be open about their physical and mental health with family, friends, or people in general?

    #NeurofibromatosisType1 #NF1 #ChronicPain

    22 comments
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    Any tips on getting a tattoo when you have nerve pain? #NF1 #nervepain

    I got one tattoo before on my ankle and I was able to sit through it. But now it's becoming difficult to find an area of my body where I don't have nerve pain. Even if it's not an area that usually bothers me, it would be extra sensitive to the deep simulation of a tattoo. And I don't want to move and ruin the art.

    #Tattoos

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    Living with neurofibromatosis type one (NF1)

    Though NF1 isn’t a super rare condition it is defined as rare by EU and USA definition, affects less than 1:2000 births. NF1 affects 1:3000 people. It is caused by a mutation on the 17th chromosome. This causes insufficient neurofibromin protein, which ultimately causes tumors to grow all over the nerves in the body. I thankfully have a fairly mild case where I only have about 30 tumors. To a person who doesn’t have NF 30 tumors may seem a lot but sadly people with NF can have 500+ tumors all over inside and outside the body. As I previously said I’m extremely lucky in that I don’t have that many tumor growth I do have joint pain and hyper mobility issues though (NF related in my case). When an individual has a rare or semi rare illness it can be difficult to diagnose I saw 4 different doctors before I got a diagnosis. Here is my diagnosis story
    ___________
    I was diagnosed with Neurofibromatosis type one when I was sixteen years old. However my story doesn’t start here, it starts when I was seven years old. This was when I stated developing cafe au lait spots, they were tiny at this point so nobody was worried about them. When I hit ten years old the spots started to get bigger and spread round my body. My mother took me to the doctor. The doctor said that it’s just a bacterial skin infection and they have me antibiotics. The antibiotics didn’t work but I didn’t go back to the doctor as i thought “it’s not a big deal if it’s a skin infection, I will grow out of it” Fast forward to when I was fifteen years old, my cafe spots had increased in size, darkened and there was more of them. I went back to the doctor and she referred me to a dermatologist. The dermatologist told me that it was Pityriasis Versicolor (a very common skin-yeast infection). She sent me home with medicine to stop the infection. The medicine did nothing for the spots. So I went back to dermatology in March just after my sixteenth birthday for a ten minute appointment to get a different anti fungal med to kill the yeast. This day I will NEVER forget. A simple ten minute doctor appointment turned into a three hour appointment. She took a biopsy of what is now known as a neurofibroma. Then she dropped the bomb and told me I had NF. I was then referred to a geneticist for genetic testing to confirm the diagnosis. Results came back confirming I have NF1. After the diagnosis I went for further check ups for my eyes to check for tumours thankfully my eyes were healthy. Now I’m 18 and this is how NF affects me at the moment: I have painful week joints so I’m currently going to physiotherapy. I go to the genetics clinic yearly to monitor my #NeurofibromatosisType1 #Neurofibromatosis #NF1 current health. NF is a progressive illness that gets worse over time I try not to think about it though. I also have a learning disability called dyslexia which can be related to NF. I’m also awaiting a referral to my local pain clinic/specialist to see if they can help.

    5 comments
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    Tough news to hear #NF1 #midarorticsyndrome

    We thought heading that our little boy had NF1 was hard news to hear, what he was 5 months old. Now he's almost 20 months and they tell us he has mid aortic syndrome. It's hard not to think of many things even though we have little control over any of it.
    #CheckInWithMe

    1 comment