Neurofibromatosis

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Neurofibromatosis
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    Loss and loneliness

    I have so many changes in life right now that it feels crazy. Some good, some bad, some that can't be labeled yet. My grandma passed away on Halloween, her birthday. She was one of my best friends and people I was closest with. The grief and hurt is insurmountable. I know it will take time for that to lessen. She was a wonderful person who loved deeply.

    On another note:
    I live with my parents currently. I had moved in to get back on my feet after a divorce and increased health issues. That was a blessing in disguise as their health is going down hill and I can be there for them, even though I struggle a lot with chronic pain and other llnesses (NF1, depression, anxiety, asthma, possible others). We get along really well and always have. But I miss having a special person. A partner that I can share each other's day, joy, grief, and everything else. It feels so difficult to find someone and connect with my health and living arrangements. I have often not felt secure or important enough in many past relationships. I long for that safety and often take relationships ending as there is something wrong with me. I think part of that is explained by severe bullying by kids when I was young. And partners not following through on some promises or giving certainty in their words when it mattered. I miss having a partner (girlfriend). It can be hard to open up to the possibility of love with security and certainty because I fear losing a partner because of stuff in my past. I know having multiple chronic illnesses complicates that for finding someone. Does anyone else experience these feelings or struggles with relationships? Is there a way that helped facilitate dating for you? What gave you hope? Sorry for this being a long and maybe sad post but I really need connection and some insight. Thank you all.

    #ChronicPain #Neurofibromatosis #NeurofibromatosisType1 #Depression #Anxiety #Grief #Romance #ChronicIllness #DatingWithAChronicIllness

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    Friends and Chronic Illness

    I'm just gonna say it. Maintaining friendships with a chronic illness is tough. It's even harder to make new friendships and meet people many times. There's a lot that goes into this: pain, anxiety, depression, and especially fatigue. Take your pick of symptoms. Having a chronic illness is exhausting. It helps to have people send a message checking in. Or just to talk about something random or that you, the person with chronic illness, is interested in. What's even harder sometimes is not knowing anyone else with your disease. I don't know anyone with Neurofibromatosis type 1. Or with chronic pain. I have family for support and I am very grateful for them. I always will be. Sometimes the support a friend can give is different and really helps. Anyways, just wanted to share some thoughts. Hope everyone is having a good day!

    #NFType1 #NF #NeurofibromatosisType1 #Neurofibromatosis #NFWarrior #ChronicPain #ChronicIllness

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    Neurofibromatosis and me

    I was officially diagnosed when I was 8 years old, my dad had it , his was a spontaneous mutation. My whole life after my leg broke itself has been a rollercoaster. Surgeries, MRI 's EEG's learning disabilities, pedimal seizures, bullies, I passed it on to my youngest son. I am getting more tumors every day it seems, any hormonal changes increase them. Puberty, menopause, I am afraid to take hormones because I think they will make them grow even more. My brain tumors scare me the most I think, I don't even know how to cope if they grow. Or multiply. Thanks for reading this. I am self conscious but I will post a picture.

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    Neurofibromatosis #curenf #AskMe

    So I am terrified at the moment, I have neurofibromatosis, it's impacted my life in many ways over my 45 years of life, I remember the stares and the pain of my ankle surgeries, the tumors I have had removed, finding out that I have a brain tumor, the learning and development issues. My struggle with numbers and math, from telling time, to remembering what I was taught about math.
    But I have been having problems with smelling things that aren't really there, and not being able to smell what is.
    I am having yet another MRI to see if my tumors in my brain are growing. I had cyberknife a few years back to try and shrink them and it helped, I just don't want to go through this again, NF combined with my other health issues I am just ready to be a timelord and regenerate, or a werewolf with healing powers 😆 seriously though, if you have NF too I am sorry for what you are going through.

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    Suggestions to help pain?

    Today is a rough pain day. These have been becoming more frequent but today is an especially tough day. Even with medication everything hurts today... head, abdomen, back, my arms and legs, etc. So I am asking for help/suggestions.

    What helps your pain? Be it medication, rest, hot/cold packs, herbal remedies, exercise etc.
    Have a great Sunday!

    #NF #Neurofibromatosis #NeurofibromatosisType1 #ChronicPain #ChronicIllness #Remedies #treatments

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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

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    Transitions

    Life transitions are difficult. They are even more challenging when faced with chronic illness, both physical and mental. I have gone through many transitions in the last couple years. I know it took a toll. And I am recovering. I am regaining my life,albeit slowly. It is not easy as I had an ableist mindset concerning myself only. I pushed too hard for too long. Now I am learning what's right for me in many areas of my life. It is worth the work but it is also very draining work. This is just a snippet of my experience. I fight chronic pain, depression, and anxiety daily. There is a lot to me. There's a lot to each and everyone of us. I thank you for this space. What are experiences on these themes/topics?

    #ChronicIllness #ChronicPain #Depression #Anxiety #MentalHealth #NeurofibromatosisType1 #NF #Neurofibromatosis

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    A tough day, a rest day

    Today is a tough day. Pain levels are high. Anxiety and depression are basically a roller coaster ride today. I've been struggling with my health lately and also got some bad news about my dad's health. Just a lot to process. Watching some movies today with a heatling pad (meds too) and just taking time to myself. What does everyone like to do on tough days?

    #ChronicIllness #ChronicPain #NeurofibromatosisType1 #NFType1 #Neurofibromatosis #Depression #Anxiety

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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

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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