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

Wednesday, March 2, 2016

NF: No news is good news 2.0 Or Why waiting six years to make an appointment is a huge waste of time

I hate Doctors. You'll say that everyone says that; but I really hate them. I tolerate my G.P because we've had him for decades. But I loathe neurologists to such a degree there isn't a non-curse strong enough to express my hate.

Last time I saw a neurologist was sometime 6 years ago judging by this post.  It did not go well, long story short. I hate her so much that I still burn, to this day, whenever I think about her. I'd write her a note telling her so, but I should get my records from her before ripping her to shreds.

THIS time I waited ages, because I had no problems since then (or before that, or ever really) and lacked actual "insurance". But since 1) we had good insurance, 2) I'm 30 3) NF is progressive for Christ's Sake and 4) I hadn't had an appointment since the aforementioned 6 years ago. So why not be proactive about my disorder and, I don't know, check up on it once in a while?

I don't think this guy actually "believes" I have NF. He wanted to know when and how and where I was diagnosed. So I'm going to have to go through the long being-an-adult-process of obtaining records from my pediatric neurologist where this fun and exciting journey began. Which means getting on the phone and trying to get records that are at least 20 years old.

 It began badly (of course): He asked why I was here and I told him the basics: "I have NF, I'm 30 and I haven't seen a neurologist in 6 years." figuring a doctor, any doctor would get the idea of checking on an incurable, progressive, untamed disorder. NOPE. "MS?" he said "No. NF. Neurofibromatosois" I said, waiting for the lights to turn on. All while mentally grabbing my purse and leaving right then. Fantastic. Well, that's fair: I couldn't even begin to say his very Greek last name.

I really don't even know why I bothered with this. It was a total waste of my time. Why do these people look at me like I'm Miss Crazy Pants when I want to check in with a neurologist when that was my bi-annual life for a good ten years. This thing doesn't "go away". Okay, fair enough, I haven't noticed anything new, but snaps for being proactive?

Needless to say, I'm probably never going to bother again. I'm pretty sure those are all the neurologists in this area with my insurance so unless my pediatric neurologist is willing to see a 30 year old, I'm kinda done. I am too old for this shit.

NF: No news is good news. Until the ticking time bomb explodes.

Sunday, October 11, 2015


I have never been normal my entire life. 

I don't think for one second I have ever FELT normal. The constant, low grade anxiety can easily swell into heightened stress without warning.  I can't help getting overwhelmed, stressed or upset or anxious over things normal people wouldn't get bothered by.  

 People incorrectly assume I have full control over this. Like I actually do this on purpose. I don't think most people really get what having a Sensory Processing Disorder is like. When you're a kid it's more forgivable. When an adult does it, it's just 'crazy' or 'weird'. Weird I can deal with.
    I have been aware of these quirks about me for as long as I've known myself.  I remember watching Rudolph at a very young age thinking "Yes! That's exactly how I feel" I don't fit. But there isn't an island of misfits where I'd fit. 

I've always felt like the one puzzle piece that got wet, and now doesn't fit in quite right to the rest of the picture. 

Now I'm 30. No closer to being normal, or functional. I can't parallel park or be counted on to fold AND put away my laundry. I leave things out and cabinets open.
Basic social interaction is complicated and difficult through my own fault. I don't have friends I see. I don't enjoy going out. Or being up late. I say the wrong things at the wrong times.

I don't know how people do it. How do adults make plans and go out all day and all night. Go here and there and just do normal adult things. Where did they learn this. How did I miss the memo?

Where does adulthood really begin? Is it really all downhill from here? Or are things just getting started because adulthood is in full swing.  I don't know how these adults became adults. They all seem to have orderly lives of jobs, chores, responsibilities.  Their lives seem ordinary and tidy. I still feel like a teenager still figuring it out. Or I just haven't figured it out how to pretend to act like I figured it out. I'm a bad liar. Hence the aforementioned "wrong things at wrong times". 

Guess it's time to put away the laundry, close the cabinet door, stop leaving things out and start flossing.

Friday, June 19, 2015

High School: Another long status update. Yeah, it's probably about you, too

So, it's graduation time. Most people look back on this fondly. Graduation parties with high school friends. But every year I remember this one time at a certain girl's graduation party. We were sitting at a table and her year book was open. Two boys from another school were flipping through it.

They, oblivious to me, happened to stop right at my page and made comments about how ugly I was. My face, my nose, my teeth. And this girl (and me, and every one else) said nothing.

 I don't know what I regret more. Being there to hear it, or not saying anything. I unfortunately resent these girls to this day. They were no friends of mine. It was ten years ago and it still stings as much as it did.  I am angry at myself for not saying anything. I was silent because I assumed that someone would say something. I was too stunned and hurt and angry to stick up for myself or make my presence known. I still know this girl's name. I'll never forget this girl. I'll never forget that hurt: it crops up in my mind around this time of year and stuns me. And I'm 17 again. Awkward and weird and shy. A mess and not nearly as comfortable in my skin as I am now.

I don't think I ever shared this with anyone. The girl I had gone to the party with turned out to be the ultimate, most manipulate mean girl. She had the kindness to express similar thoughts of ugly to me as well in our falling out. But that's another story.

With this experience, I have a hard time believing that high school is hard for "Everyone". The pretty, popular, smart girls had it easy. Don't try and tell me it wasn't. Shame on you for treating others the way you did. Shame on me for putting up with it.

The past is so very much in the past. But it's so hard to forget. You can forgive the girl too much of a whimp to say anything to those boys. But you can't stop that sting. It confirmed every thought about my looks I've had since I learned looks were important. These guys were just as gawky and awkward as I was. And I loathed them. I'm furious at my 17 year old self. 29 year old me would never put up with that shit. I'm not even sure 21 year old me would. I thought I was comfortable in my own skin up to that moment. I was getting used to myself and growing up. Being weird and odd. And I thought I didn't care. But then two stupid teenage boys make fun of you, and it's gone. Why do we do that to ourselves?

Anyway, it was on my mind today. Just putting it out there. Just don't let others dull your sparkle, capeesh?

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.

Wednesday, February 25, 2015

Simply Smiles

Yikes! I'm so late this month with my New Year's Resolution.

Last summer my mom and some members of our church joined an organization called "Simply Smiles" to volunteer at a reservation in South Dakota
Again, to save the trouble of trying to lamely explain what they do, here is an excerpt from their approach section on their website.(I am copying this with only the best of intentions and not in any way trying to pass this off as my own words)

"Our supporters, our donors, and our volunteers allow us to see the individual in need and support them in this same way – but on a scale of thousands of individuals and growing.
From the desolate prairies of an Indian reservation in South Dakota to the remote mountains of Oaxaca, Mexico, this personal and holistic approach means we are providing food, clothing, shelter, medical care, education, infrastructure, jobs, pride, dignity, hope, and solutions."

They are trying to make a real difference in these people's lives. They want to create sustainability, integrity and dignity for those they help. They don't want to just throw money at the problem. They really want to try and help them stand on their own feet.

In South Dakota, in the land they were given by the government (let's not get started on the American Government and Native Americans) is completely unsuitable for growing anything. The poverty, obesity, diabetes, drugs, alcohol and suicide rates are unfathomable.The unemployment rate is 90%. And Simply Smiles just wants to help fix that. In such a hopeless place, they try to bring a little light into it to secure a better future.
I like a lot of charities. I believe in dozens of great causes.  They are all worthy and good in their own way. I know this charity is currently "only" (which I use lightly) two different locations at the moment, but they are doing a lot of good and are trying to expand their work to other places. I think (and if I am incorrect, please correct me) it is Simply Smile's goal for them to not be needed in South Dakota anymore. I think their dream and aim is to do their work, get the Reservation put back together and settled in, and then leave and check up on them periodically. Then they can continue working with other places in need. 

As I said, my mother went for a week. It was a lot of work, outdoors in July. It sounded like an amazing experience and an exhausting one. I hope someday I can do similar things. Volunteering and getting firsthand insight on other ways of life, and being able to help others in need.

We attended the Fundraiser they had a week or so ago. My mother and I baked bar cookies for the event. I was interested to go to see their story and what they wanted to get accomplished this year. The young man who started this entire organization is energetic and incredible.
I was astonished at the amount of money people were donating to the event. Donating money in the thousands. The thousands. 5 grand here, 1 grand there. Beyond generous. Can you imagine? It is my dream (and I'm sure my husband's too) that one day we will be financially stable and can actually do that.

One day I hope I can donate hundreds or even thousands of dollars to a charity I believe in.  To be able to say "Yes! I believe in this cause! Take this money and make a difference in the world!" If I am able to achieve that in my life, my life will be very blessed and very worthwhile. To be rich enough to give it away would be a wonderful thing.

But for now, this is all we can do. Pick a good cause every month and donate what we can. And to tell you about what they do. Maybe one day I'll go from donating money to raising money to get myself to South Dakota to help Simply Smiles, or to Cambodia to help the Wat Opot Community. Or anywhere in the country for Habitat for Humanity. Or anything else that may come up.

Saturday, January 10, 2015

Girl Scout Cookie Time!

Iiiit's that time again!  Girl Scout cookie season is upon us! I think I can safely say if we were never a Girl Scout we certainly knew someone who was. I put many years in pounding the pavement and parents' workplaces selling boxes of cookie goodness.

My cousin's daughter is a girl scout and I think this is her second or third year selling cookies. This year girls can sell their cookies online. I think it's a great idea! Now relatives and friends can support their favorite girl scout from miles away. I'm pleased the Association are enabling their scouts to use technology and other ways of doing business.

What I also really like about it is there's an option to donate boxes to an organization that sends the cookies to troops overseas. I love that! Giving Troops a little taste of home is so incredibly valuable. 

Anyway, I'm really looking forward to this year. I started this resolution in the fall and now that we're fresh in 2015 I can't wait to share my favorite causes and charities with you. A whole year of good causes!

We're in Girl Scout Cookie season! Find out from your local troops who sends cookies overseas and get a few boxes for the soldiers! I know I'm trying very hard (and failing very hard) at "being" healthy this year. So you might wanna avoid the cookies. But that's no reason not to support your girl scout troop or your military overseas! They both are more than worthy of your love and support.

Here's my cousin's daughter's page, but if you have a scout of your own, mosey on over to their page and show them some love! 

Wednesday, December 17, 2014

Wat Opot Community

I'm going a little off the beaten path this month for my Pre-New Year's Resolution. Over the past few months I've typically donated and shared with you places that help a large amount of people. This month, I'm very glad to be able to share with you a small place in Cambodia.

I hope in sharing this with you I am not giving any misinformation. If I am mistaken in any of this, I am very sorry and will correct it accordingly. If I am unintentionally plagiarizing anything, I will correct that as well.

I recently finished a book, In a Rocket Made of Ice by Gail Gutradt

Briefly, it is about the time Gail spent in an Orphanage in Cambodia. But what made this Orphanage different was that children with HIV/AIDS lived there. They could live and receive an education, treatment and a loving atmosphere where they were once feared and abandoned.

To borrow from the website, "What is special about Wat Opot?  It is rare, and perhaps unique in Cambodia, for HIV-infected and non-infected children to live together as family, sharing homes and meals and playing together.  This sets an example for the community, and its effect on increasing tolerance and diminishing fear cannot be overstated.  Many orphanages are simply holding tanks, where fortunate children are either adopted out, or warehoused til they come of age.  Wayne sees Wat Opot as a loving extended family, a place where children will want to return to visit after they have left to live in the larger community.  It is open to everyone, the poorest of the poor, the most rejected and abandoned, regardless of religion or past experience, and to young and old.   Money is tight, but Wat Opot Project runs on the less quantifiable energies of love and kindness, service,  faith, and commitment" 

What really drew me to this community was one of its founders, Wayne. A Vietnam vet and the only survivor of an attack, Wayne wanted to be of service to others. He teamed up with a Buddhist, Vandine Sann, and created this community that would eventually be the Wat Opot.

What I really love about Wayne is his love and compassion. He gives himself fully into what he does every day.  I love his integrity and his deep faith. He is doing God's work. He is helping others and giving all the has to better the lives of others. He is truly a good man. I have so much respect and love for his work.  The people who volunteer with him are good people.

It got me really thinking about volunteering abroad. Living in Cambodia for a few months and doing what I could to help.
But I'd be lousy at it. I can easily follow the majority of the rules. I always dress modestly. I don't smoke/drink/do drugs.I would respect the culture and conduct myself in a way befitting of the community.I would throw myself into the community with love, enthusiasm, and respect.

The thing I would struggle with, is coddling the children. I would love and dote. I wouldn't be able to resit a sweet smile or a cute face. I would  be the one to buy 50 or more small pieces of candy for all the children. I wouldn't be able to restrain myself. I would become attached. Which would just be difficult for all of us once I left. I love kids. I tend to dote on the Regular's kids at work. I can't imagine how attached I could become to these children.

But Wat Opot really touched me. As amazing and life changing it would be to join a foundation that traveled to volunteer and help others; I don't think I'm ready for that in my life. Change like that is scary and wonderful. To quote a loved book, The Bean Trees "Some folks are heroes and take the risks, and other folks do what they can from behind the scenes." Until I get to that point of service in my life, I want to work behind the scenes.

 I encourage you to read the book. It is heartfelt and full of life. Getting to know Wayne, the volunteers and the children of the Wat Opot Community only furthers my resolve that one person can absolutely make a difference.