An Unmasking of Sorts

I have not been faithful as I have intended to be posting to my blog about NF. But that is about to change. I said in the first post that I wanted this to be about advocacy and about my personal journey with NF, as well as keeping others updated on Arabella’s journey. I have a few posts already typed ready to be posted but needed to take a moment to unmask.

When I say allow me to unmask, do not misunderstand that statement. I am not implying that I am “fake” or pretending to be OK. By unmasking I mean let me reveal what all is going on. When you deal with chronic pain, with no relief, on a daily basis you learn to live your life as normal as possible. I push through my routine like everyone else. I try hard not to let the pain take over or alter how I do things. But the reality is, it DOES alter how I do things.

My normal changes daily. I can reach for something and just the slightest wrong touch of my fingers will send excruciating pain throughout my body. The neurofibromas caused by NF are in multiple locations and removal of them is not always an option nor recommended. Removal can have lasting effects resulting in even more pain, hence my cane usage (blog post about my surgery upcoming).

I was once asked about pain medicines and what can I take. The easiest and shortest answer is there are none currently available that work. Since it is neurological pain it is harder to target the area where the pain is and most of the meds are narcotics that are prone to addiction. So, that is not an option for me at all.

So why “unmask”? Why am I telling you all of this? Well, it is NOT for sympathy. I appreciate the genuine concern from people, but I am not seeking out that. I am putting this out there so that more people can become aware of the struggle those of us with NF face. I am putting this out there because I need to get it out of my head sometimes, it is therapeutic for me. I read in support groups other people’s struggles and it is hard to see so many others (approximately 8,000 members worldwide in one FB support group) who are struggling and read their stories so I have to get mine out as well for my mental wellbeing. I don’t really talk out loud about NF and my struggles because I don’t want to be a downer to my wife or cause additional anxiety in Arabella and her potential struggles. I am putting it out there to have a diary of what I have been and am going through.

My hope is that the things I post here, after the initial posts, will be informative and uplifting. But you first must see the perspective from which I write. The more you understand my perspective the better you can understand my posts.

 
I appreciate your taking the time to read through this. Sorry if it comes across as a “woe is me” post because again, that is not the intent.