Welcome to my other blog. I started this one shortly after graduating from the C.I.A, to differentiate between my food and my other thoughts. It's a cozy little place with frequent weird but real, honest thoughts.

There's really not much more to say here, as anything mildly interesting is either down below or written in my Armadillo section above.
Hope you can relate to some of my thoughts and situations, even if they tend to be strange sometimes

Saturday, May 2, 2015

A long status update that turned into a blog post

I don't really have much to say about NF right now. My friends with kids who have NF talk about endless doctor appointments, school issues and worry. We all have our different origin stories. Our struggles and secrets and worries. I don't have any stories right now. I have friends; a mother and daughter in Australia who just had procedures done to burn over hundreds of tumors on their bodies. Other friends have young children with similar issues of pain, headaches, itching....Well, I can't do it justice. So here's a personal account from one friend, a very lovely lady from Canada who I consider a close member of my NF family:

"He goes to physio every second week. Yesterday he saw the endocrinologist. Next week he sees the developmental pediatrician. The neurologist said there's only a minor change in his MRI and the occupational therapist is yet to weigh in on his fine motor issues. The speech therapist is being consulted as is the allergist and urologist.
Just about every week I have to leave work to bring him to an appointment.

This is life with NF. And we're the fortunate ones. No dysplasia, scoliosis, or tumours...yet.
This is why May is an important month to us. Because doctors and health care providers say with shock "wow I saw another kid with NF this week!" Medical students ask with a pleading look if they can examine him and ask me to describe his spots and how some are darker than others. Educators don't take things like the known social immaturity into consideration, though I give them handouts on it. And I'm sure everyone at work probably thinks I'm goofing off (actually they've been great, but it's still stressful to have to take so much time for appointments)
We need May to be awareness month because we need to explain, again and again - in front of our child - what NF is; what it stands for; what it means. Yet no one except those with it can understand what it means for our family.
NF is more common than Cystic Fibrosis, Muscular Dystrophy, and Huntington's Disease COMBINED. But those disorders are words you recognise, can pronounce even while Neurofibromatosis remains unspoken.""

If I try hard to think way back to my childhood, I can almost remember this. I remember frequent doctor visits and MRIs, testing to assess I.E.P stuff, getting poked and prodded. I remember one visit to a hospital- maybe Yale or somewhere in White Plains; where a small group of doctors looked at me in amazement and looked me head to toe to look at my spots. I sat there, tiny and a combination of confused/annoyed/humiliated/furious. Like, what was the big friggin deal? I don't remember them even talking to me, it was ridiculous. I always liked my spots anyway, but that didn't mean I didn't want a bunch of Quacks poking at them.  But NF was so unknown back then. It probably still is. I may have been the only case of NF those doctors would ever see in their lifetime. Or maybe not. The times they are a-changin'. When I went to the E.N.T for a tinnitus issue, the doctor actually -knew- what NF was. God help me, he knew what it was. He even asked a few questions and seemed interested. But in a nice way. Not in a "Oh my God, a person with NF!!!" kind of way. Which was pretty neat. I'm sure I'm the only NF patient my general doctors have. I've never asked.

When I was younger, I was never interested in NF. What I knew I didn't like and I had no interest in seeking out others like me. I think I was just so worried about the issue I didn't want to admit to having it. It was the big spotted elephant in the room. It made me nervous and overwhelmed. There wasn't anything I could do about it. It was the total opposite approach I should have taken and a part of me regrets that now. But another part of me knew enough about NF to know I was a slight anomaly. I felt like I shouldn't go to the NF camps or take part in such things because I didn't have it badly enough. But also, the idea of flying across the country was terrifying. So there's that.

But I'm so much older now, and have so much farther to go. My worries aren't that of a little girl with spots anymore.

I worry about when I'm going to find another Neurological Doctor; my other one was condescending and awful....Maybe I'll write to her and tell her how terribly unethical and rude she was. Maybe I wont. It was so long ago but still burns me up.

I worry about when we start having kids and what will happen to them, let alone me. Pregnancy can exacerbate NF (but then again, so does a hell of a lot of other things). I had grand plans of being "proactive about my health" and "being my own advocate" and see an NF Specialist, a geneticist and a new Neuro Doc at the start of this year.

I worry about when I do have kids, and what they will and will not have. School was a struggle for me. For almost the entirety of my school career. The idea of doing it all over again, but this time with my own child is devastating. To send my wee one into the school world I experienced is exhausting. I don't know if I'm up to it. I don't know how my parents did it. How they handled this weird little kid with so many problems and managed to love me anyway. Prognosis for me as a little one were not good. "Maybe a grade school education" doctors said. But my parents, God love them, disregarded that.
A normal, healthy person has a kid and has the same worries over problems and health and school and their future. I'm just pushing my odds and my luck. The Russian Roulette of kids.

I just know I'm getting older. Approaching 30 at an alarmingly fast rate. Which for some may be an excuse to drink, do something extravagant or something. But for me, it's pretty terrifying. No one ever put this in my mind as a kid, but I couldn't see myself getting older. When we had class projects of "Your life in 10, 20, 30 years" I couldn't picture it. It wasn't that I thought I was going to die or anything. I just couldn't see it. I wouldn't let myself think that far in the future because it was so uncertain. Maybe I'd be totally fine, maybe I wouldn't. I thought it was a waste of time to speculate. I knew what I'd like: The C.I.A, friends, a husband, a job.
But as far as actually making it to this point in my life slightly damaged but none the less functional is weird. I thought NF would have gotten me by now. I'm just waiting for the other shoe to drop. It's going to get me sooner or later. Or my kids, or both. If I'm untouched what of my kids? I don't even -have- kids. I'm more worried for them than for me.

But that's my latest worry. I see pictures of my all my cousins children and I see the little ones at work- especially the regulars- and I know I want that kind of life so much. The long nights, the longer days, the exhaustion, the annoyance, the sick days, the tantrums....all made worthwhile by this tiny creature. That's what I keep hearing at least. I see smiling babies, excited toddlers, cute kids, disgruntled teenagers and grown adults with their parents. And it seems like a pretty sweet deal. Except for that patch between 12-20.


If you've stuck with me this whole time, thanks.  There is not enough bold, italics, or underlining that can express how important Neurofibromatosis awareness is. There's no cure, no real treatment for this progressive common neurological disorder. Thank you for taking the time to read this. Please continue to learn more. Thanks for your awareness. It's not a cure, but it's a start.