Death comes unexpectedly...

Sunday afternoon Troy and I were watching TV, he was flipping through the channels and we stopped on X-Men: Last Stand. I have seen this movie before but was asking questions about one of the characters, Jane Grey who became Phoenix. Then I remembered "oh yeah, that is your sister Terri Kay she has all those X-Men comics. I will have to ask her to explain that character to me". Unfortunately I will not get the opportunity to ask "TK". She was killed Monday evening on your way home from work, hit head on by a driver who was driving in the wrong lane. She was less than 3 miles from home...I have always tried to tell those close to me that I love them, as a matter of fact I rarely end a phone conversation without ending it with " I love you". I do this with my family and friends. You never know when that last chance will be, remember it is not necessarily for the person on the receiving end of the conversation but for you...Terri Kay we will miss you. I hope you are at peace and watching over all of us with Nana and my dad. If you watch over us from Heaven I will do my best to look after James and the girls down here.

Anne Frank, the first blogger?

When I decided to start this blog I intended it to be sort of a diary, you know kind of a Anne Frank of our time. Did you know she referred to her diary as "Kitty" and when she wrote she did so as if she was speaking to someone. I find this rather interesting because when I am blogging I am merely writing down my thoughts in hope that someone will come across them, read them and find something useful in what they have read. Can you imagine the people that she would have reached if the technology that we have today had been available to her. I bet that it would not have taken the US the us being bombed at Pearl Harbor to get involved WWII. She would have been that hidden voice with an untraceable ISP sending messages of hope to those others in hiding. It is very sad when you think about it, she never got to see how her story has inspired millions of people throughout the world. I often think she wanted her diary to be found, had she grown up as God intended and not "murdered" I think she would have had a lot to say. Now you may ask yourself what does this have to do with NF. Well, it has nothing really to do with NF. This is just another day in the life of this NF'er who enjoys writing down her thoughts and hopes to share them with others.

Just testing!

I just wanted to test the blogger app on my phone!

This blog is actually about nothing...

Do you have a "to do" list? It is actually very nice to mark something off of that to do list, although finishing Feast for Crows is still on that to do list and lets not forget losing 10 pounds. Not that I expect to finish reading 600 pages today or drop that ten pounds I am realistic after all . But there is nothing wrong with having a running "to do list". This should not be confused with the very popular "bucket list" which may be discussed in a future blog. A running "to do" list is one for us procrastinators, the Scarlett O'Haras of the world who feel like "I will think about it tomorrow". I am so guilty of that, for example I just spent nearly two hours cleaning out messages from my work in box. Okay so I had nearly two hundred messages that went back to September. For those of you who know what my job entails be not afraid no one was harmed by my lack of reading messages. Sometimes my brain gets so overload and the last thing I want to do is read "blah blah blah" so I do my best Scarlett and think about it tomorrow...Like I said procrastinator!!! My husband will attest to this fact to because as I sit here typing this blog I should be putting clothes in the dryer and getting stuff together for work in the morning. Why the night is so young...Not really but being a NF'er (and having that last cup of coffee) means I will still be up for awhile since it takes forever to fall asleep, plus I would really like to take the "kids" out one more time before I get ready to settle for the night. If I don't I will have to procrastinate getting up at 3:00 am to take them outside again. So before I get to mark laundry off of today's to do list I would like to end this totally pointless blurb of the night and thank my now 4 followers for stopping by and for those who have viewed it do not be shy, feel free to comment.

Thalia you have some explaining to do.....

This morning on my rainy drive into work it occurred to me that some of you reading this blog may not know what an NF'er is and where the name came from. So I decided to give a little educational information to you. If you are an NF'er please check back tomorrow for my regularly scheduled blog. First of all an NF'er is someone who suffers from Neurofibromatosis. Where this nickname actually came from I am not sure but it is something that stuck. So what is NF (which is what we call neuro-fi-broma-tosis)it  is the most common genetic disorder that affects 1-3500 individuals. It is a progressive disorder and is different in all cases. It causes tumors to grow anywhere on or inside the body and in some cases the tumors can become cancerous. People with NF can also have learning disabilities, scoliosis, high blood pressure, seizures and chronic pain. There is no cure or treatment for NF. If you would like to learn more about NF I recommend checking out an official site http://www.texasnf.org/ , it has lots of information as well as opportunities to volunteer or donate funds which are always needed. If you happened to stumble across this blog due to a recent diagnosis of NF please be sure to get information from one of the official sites. Most of us mean well when we offer information but these are based on our own individual experience and should in no way be taken as "medical" facts. Thanks for stopping by today and I sure hope to enlighten you again tomorrow.

Is it possible to love rain and hate it at the same time?

Rain...One of the worst possible things that can happen for an NFer..I hate the dampness and the way it makes my already stiff joints ache...Rain pain I think is what I have heard others call it. So can someone please explain to me how it is possible to love something that makes your day miserable. It started raining today a little bit before rush hour and is still raining now with the occassional flash of lighting and sound of thunder and I love it. I am in the security of my home (no threats of severe weather thank goodness) and I love the sound of the drops hitting the roof. It is completely relaxing and I hope it continues til past my bedtime.It is one of the few things that can ease my mind into focusing on something else. My brain never stops and I mean never. I was told that NFers brains are just that way. Is there scientic proof on that? Hmmm I think if you ask another NFer they will tell you the samething. Oops off subject, I love my tangents. That is not an NF thing that is a Thalia Thistlepenny thing...Another reason I love the rain, I love the feel of the drops on my skin and it dripping off my hair. It is like being kissed by God. He is sending his love down to our planet and providing it with the drink it needs and he is washing away the dirt and grime from a bad day. It is a chance for me to feel renewed and ready to take on another day. So I guess what I am saying is yes you can love and hate rain at the same time, but I prefer to love it!

My First Blog

So, I decided to start a blog. A lot of NF'ers (people with Neurofibromatosis) like to complain that there is not enough NF awareness out there but they are not doing anything about it. It is not the sole responsibility for The Children's Tumor Foundation or the Texas NF Foundation to raise awareness and we cannot expect a "celebrity"  to do the work for us. I have always tried to take the proactive approach. If we want a cure or treatment to be discovered WE must be the ones out there advocating for research dollars and educating the public disorder. We also need to stay informed about current clinical trials and advances in any medications that may be available to help treat our symptoms. It is also best if we go to reliable resources for correct information and not just the information that may be posted on Facebook or other social networking sites. The better educated we are the better we can educate others about us.