3 Confessions: Of A Girl With NF1

NF1 is a type of Neurofiromatosis (neuro-fibro-ma-to-sis). Sounds like a tounge twister huh! Think it’s hard to say, well you can’t begin to imagine what it’s like to live with it. Let me give you a run down about NF. First off, there are 3 types: NF1, NF2 and schwannomatosis. Schwannomatosis is less well understood, but the majority of cases appear to occur by chance, not because they are inherited. Neurofibromatosis is a genetic disorder, you can get it from a parent who has the disorder or by some spontaneous change in a specific gene in either the egg or the sperm. For NF1 that gene is found on chromosome 17. I have the most common type which is NF1.  For more information on NF you can visit. Children’s Tumor Foundation

Now here are a few of my confessions, my clean, dirty, big, little secrets

It Can Get Super Itchy:  

Some days I want to pull all my hair out, there are sometimes when the middle of my scalp is itchy that I pluck a strand out and it feels sooooooo good. I can’t keep doing that though so now I have opted for using peppermint oil and you know it is said when using essential oils to mix them with a carrier oil such as coconut oil, castor oil or olive oil. Listen! No! I do not have the time for that. Don’t tell me about washing my daily, no! that does not work, that just makes it worse. Thing is there is no damn dry scalp or dandruff whatever you want to call it. It just freaking itches!!! Massaging some peppermint oil straight from the bottle to my scalp is a relief. It works!  Not only does your scalp itch but the skin as well especially the fibromas on the skin. What I usually use to help with that is Coconut or Shea Butter Lotion (PLENTY OF IT)

 

Periods & Sometimes Sex Can Be Painful

For some women any of those fibromas whether on the outer lips, under the skin of the outer lips, inside the vaginal wall, on your uterus, pelvis…you catch the drift. The pain that hits you!! Especially since these fibromas grow on nerve endings. I have endometriosis as well so just imagine the pain!! Even though I have changed my diet (will cover this in another post) and somewhat minimized my endo pain, it can never compare to the pain of when those fibromas hurt especially if they all hurt at once. I am great at handling pain given all the pain I go through but if there is one pain that brings tears to my eyes is the pain of the vagina when that time of the month comes or sometimes after sex.

 

The Cosmetic Dilema… (Sometimes)

Truth be told each time a new tumor pops up on or under my skin, it saddens me just a little, a tiny bit. I have grown to love my birthmarks in the past few years, I call them my natural tattoos but I am still trying to completely love the fibromas on my skin and under my skin for the mere fact that they can become bigger and disfiguring and I honestly don’t know if I am ready for that yet. Most of the time I just don’t give a crap about the stares and whispers but then they are the times when I really feel it and each time no matter how I am feeling, hubby is always there telling me how beautiful I am. Still though I can’t help but think how I will look in a couple of months or years if they grow any bigger especially the ones in my in face.

 

 

 

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