Neurofibromatosis

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I'm new here!

Hi, my name is Anjpanj. I'm here because
I have been living with benign brain tumours for the last 26 years & was diagnosed with the rare genetic condition known as neurofibromatosis type 2, nine years ago. I’m the only 1 in my family of 5 to have this condition. I’m reaching out to others who have this condition for help & support at dealing with a hidden disability ( mine is at the moment apart from being partially bald from my treatment).I have left sided partial deafness from an Acoustic schwannoma . I live alone in South West London. I had to give up my profession of a complementary therapist which I loved. I now make jewellery, walk & look after dogs, garden, See family & enjoy tai chi & chi gong which helps with my balance. I look forward to hearing from you…. Xxx#MightyTogether #NeurofibromatosisType2

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I'm new here!

Hi, my name is S_I_M. I'm here because I have Type 2 Neurofibromatosis (NF2). I am deafblind with mobility issues.

#MightyTogether

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Needing change and finding people who see love in different situations

I have had a lot going on in the last year or two (especially lol). I always have as I have chronic health issues: NF1, chronic pain, migraine, asthma, major depression, and generalized anxiety. I have realized that I endured events that were traumatic but didn't want to label it as such at the time. But I was having a conversation the other day with my therapist and they told me that I need people in my life who see the love in everything. That really hit me. My parents have always seen the love in everything. However, I realize that in past relationships the people haven't always seen the love in everything. And I need more of that as I try to do that for other people. I need people that are accepting and understanding of me as a whole, imperfect person and my health struggles. People that show up consistently. I don't know anyone with NF1 or chronic pain and would like to make friends with them. I'd like to make friends with people who see the love and hope in everything, even in the worst situations. So this is sort of an invite for conversation. And I'm curious how have you cultivated relationships with these individuals or with individuals that have the same conditions as you? I look forward to hearing what everyone has to say and hope you all are having a good day! Thank you 🙂

#NeurofibromatosisType1 #NF1 #Neurofibromatosis #braintumors #ChronicPain #Depression #Anxiety #Asthma #Trauma #change

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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

25 comments
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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