I'm stumped..

For the first time in almost 2 years, and only the second time in the 3 years I've been writing this blog I'm stumped. I've cut down on how many times I post several times but have only completed stop once or twice since I started. I took a writer's block break and traveled cross country of a greyhound bus and went out of town last weekend hoping that if I cleared my mind some I could get right back into routine. That is not the case and I'm pleased with some of my more popular posts and I'm glad my blog have been able to help people I know in person, those I've only met online and those that I've never had any contact with before. I want to continue to improve my writing skills and improve the topics themselves. I have some ideas in mind but a lot of them will take some time. If you would like to write a guest post for me let me know or even if you have any ideas. I'll start brain storming and attempt to make a back log so I could post every few weeks again even if it's just for a while. I also have other ideas for other blogs that I intend on working on some, some of them on the same subject but others not so much. I'll still probably post once in a while once or twice every two months maybe). If you need help (even though I'm not allowed to recommended medical advice) please message me. my information should be on my page.

Phoenix Hydrocephalus walk 2014/ Great Pumpkin Race 2014

I haven't written any posts in about 6 weeks because I went out of state for a couple weeks for the wedding of one of my closest friends. I missed the first post for August because it was a few days before I left and I was busy getting ready and I missed the second because I was in Iowa and it would have been really difficult to write a blog post with my phone. I've been keeping track of my statistics and I've noticed that there has been a couple people looking for information on the Hydrocephalus walk in Phoenix next month (I live a couple hours away in Tucson). I'm also going to include another Hydrocephalus (neurology in general) related event the weekend following the Hydrocephalus walk in Tucson.

There has been at least a Hydrocephalus walks in Phoenix before but it's been a couple years since the last one and all the previous ones were at the Phoenix Zoo. This year it's going to be at the Steele Indian School Park at Central and Indian School Park (300 east Indian School Road). I've never lived in the area and except for family reunions I've only been there a handful of times so I decided to check out the area online and figure out where I'll be staying and how to get there. The Steele Indian School Park is at the location where the Indian School in Phoenix was for many decades and if you don't drive or want another option other than driving the Metro Valley Light Rail has a stop right at Indian School and Central. The walk is October 4th and registration starts at 8:30am with the walk starting at 10am.

The Great Pumpkin race is going to be in the Tucson area on October 12th. It's a 5k at Buckelew Farms that raises money for the Hydrocephalus Association too. The person that puts the race together each year is Thomas Tronsdal who has a son with Hydrocephalus. The race starts at 8am with a kids race at 7:30am. Buckelew Farms is outside of Tucson at 17000 West Ajo Highway.

The links below provides information for registration for both events. Also for information about the Valley Metro Light Rail. There's no public transportation that will get you to the Buckelew Farms area and there is no hotels/motels really close that I know of but there are many on the connecting interstates that's close by (I-10 and I-19). I used different colors for the link so there would be less confusion about which links are for which events. The Phoenix Hydrocephalus walk is in red, Great Pumpkin race is in blue and the Valley Metro light rail information is in purple. Thanks for reading.



 http://hawalk.kintera.org/faf/home/default.asp?ievent=1098504

https://www.facebook.com/Phoenix.Arizona.Hydrocephalus.Association.WALK

https://twitter.com/phoenixhawalk

 http://www.azroadrunners.org/races/detail/pumpkin

 https://www.facebook.com/events/820005214699988/

 http://www.valleymetro.org/metrolightrail

 http://raillife.com/2009/07/phoenix-light-rail-map/

Medical ID bracelet

I'm going to be traveling across several states next month alone and on a greyhound bus so I decided to get a medical ID bracelet. It's something I've been planning to do for years but have never gotten around to it. The most common way of buying is through americanmedical-id.com or similar sites and also websites to chain drug stores like Walgreen's. The way I bought mine saved me time I would have spent waiting to get it in the mail and I wanted to made sure I had it before I left. It's always a better way to make sure your information and size of the bracelet is correct. I got mine at a local affordable jewelery store where I had seen them before. Even if they were closed for construction the owner let me make a appointment with me. She made sure it fit and double checked to make sure that she had my correct information, then she engraved it onsite while I had lunch and a couple beers next door (I had already finished work for the day because I started at around 4 or 5am and as long as I don't be stupid I'm allowed to drink without it causing anymore damage to my shunt or messing with meds.). Below is a picture of my bracelet, a couple links and links to social media pages of the store I got my bracelet at. I couldn't get a clear shot of the bracelet but it says "Hydrocephalus" and "VP shunt" with my name on the back. Other medical conditions and medications can also fit onto the bracelet, on a card in your wallet or purse, or you can get a usb medical id bracelet where you can store information on it that can be reached anywhere where there's a computer.

http://www.americanmedical-id.com/category/medical-ID-bracelets-62?gclid=CjwKEAjwxtKeBRDMzoeQmYn5uHcSJACGCF3DfyNXyIztd_t3sCmHUMI2DE8OUXd5sr1yjpGYxYWqPBoCSQnw_wcB

http://www.medicalert.org/promo/connect-with-medicalert?utm_campaign=SEM-medid&utm_medium=cpc&utm_source=google&utm_content=connectwithmed&gclid=CjwKEAjwxtKeBRDMzoeQmYn5uHcSJACGCF3Dx8XwhtS_qo6SCEU5meIdAtzyp_wvuTV3_3CgZ9h9PhoCEhvw_wcB

http://www.walgreens.com/q/medical-id-bracelets

http://www.cvs.com/shop/Health-&-Medicine/First-Aid/Medical-ID-Bracelets/_/N-3uZ13lr5uZ2k?pt=SUBCATEGORY

https://www.facebook.com/SilverSeaJewelry

https://foursquare.com/v/silver-sea/4c1953d04ff90f47b0c80f49?ref=atw

http://www.yelp.com/biz/silver-sea-jewelry-and-gifts-tucson

Reflection on journey in struggling with low self esteem/ self hatred with hopes it will help someone else.

At this point I've been writing for two and a half years, and I've covered most of what I've wanted to cover a long time ago. I intend on keeping it up until I manage to completely run out of topics, or if something happens that stops me from getting internet access. This along with other recent topics is something that's been bothering me for a while. Instead of venting I want others to get something out of it, especially if it's someone who younger or just not as self-aware yet.

Through several different stages in life I've become more and more aware of what people think of me and deal with self-hatred on different levels. I've known that I'm different for as long as I can remember but it was when I started school that I learned that my differences could and would be taken advantage and used against any different forms including physical. Over time in Elementary School I realized that my good friends were few and far between. I at least thought that it was because who I am and the major differences seen in me. I now know that people with Hydrocephalus even very young tend to be really socially awkward and anxious, so that probably part of the problem as well. Except for my speech impediment what hit the hardest at the time was in Physical Education when I was always the kid that was last to be picked and had to be forced onto a team. I wouldn't have wanted "me" to be on a sports team either, and I always dreaded having to play anyway. It was just a reminder of the differences I have/had because of Hydrocephalus. I had to acknowledge my shunt when I was asked to play a contact sport but it was almost something that went farther than that and it was almost always something that bothered me.

The second major stage was when I was in the Fifth grade and without my Parent's knowledge or letting me know what was happening I was sent to a Elementary age Track meet and had to race with other special needs kids, except what I thought at the time was obvious and still think to a certain point was that I was far more functioning than all the others. I don't mean disrespect to anyone reading this but except for a couple Special Education classes each year for my learning disability specifically and later on organizational problems I was in normal classes with everyone else and even the Special Education classes including mostly of peers where there's nothing different except for a problem with learning. Of course I don't know what most of my peers thought of me but that definitely caused me to really start to be paranoid about it. Someone that I've mentioned before and did the opposite was the specialist for Adaptive Physical Education when I was in the Fifth grade and Junior High. He really showed a difference in the way he spoke to and treated me compared to another kid with more major disabilities especially when it was a one on one session. I purposely act out more and rebel in the "goodie two shoes" way that I had before because it was obvious to me that it wasn't helping me making any friends. If I would have waited just more year, I would have realized that my good friends in Junior and High school would have accepted me the way I was before. It would have probably saved me a lot of pain later on.

Importance of therapies early on instead of later from personal experience

I meant to write this on Friday but I've been keeping busy at work so I haven't had much time to put a post together. I've also been nervous about writing this specific post so I've been putting it off but I feel it's something that really has to be said. I spent the majority of my childhood in Speech Therapy and was given the option to stop my Freshman year of High School even if I was no where near finishing the program, and I definitely wouldn't have before graduation. I was given that option because I was pulled out of class for Speech Therapy and it that itself was a bigger problem than it was in Junior High and especially Elementary School. I sort of regret of not taking Speech Therapy for the rest of High School but now that I've been backsliding again it might not have mattered later on. My speech impediment hasn't stopped me from finding jobs. I went through a few jobs before settling with Kroger and got promoted during the time I've been having Hydrocephalus related medical problems and while my speech has been backsliding.

Even though I'm not willing to go into much detail about it writing on a public site, what I regret now is the lack of Occupational Therapy when a lot of the focus was on  Speech Therapy. I had it in Preschool and then during a two year period when I was in the 5th grade and into Junior High in the form of Adaptive P.E but I wish I would have been offered more. I'm not sure how much the school district offered though, and my parents wouldn't have been able to afford if it wasn't something they would have had to pay for. I'm able to do that majority of my job without a problem but I run into problems when I have to do something that has to do with fine motor skills. I've been offered Occupational Therapy recently but working 5 or 6 days a week and almost full time it's something I don't have time for. I need to keep my availability open as much as possible too so it would be tough to schedule it on a regular basis.

The point of this post is a warning to Parents of children with Hydrocephalus or younger people with it to consider Occupational Therapy if it's not already being provided because problems fine motor skills and other similar problems will just be worse in the work force. I know that there's a lot of people with Hydrocephalus and with some it's obvious it wouldn't be possible early on. But with many people with Hydrocephalus it is possible to lead a pretty normal life. Thanks for reading, and I helped and encouraged others. If you want to know about my specific struggles with fine motor skills at work feel free to send me a E-mail or contact me on the social networking sites where I post links to my blog.

 http://kidshealth.org/parent/system/ill/occupational_therapy.html

 http://kidshealth.org/parent/system/ill/speech_therapy.html

 http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

Media Views On Hydrocephalus: Fastball's "The Way"

This is mu 8th post with the specific topic of "Media views on Hydrocephalus". Each one is about a well known person or a character with Hydrocephalus, or someone that most likely has it. This post is kind of different but it falls underneath the same category. Some of the posts was about people I already knew about but a few like this one was because something sparked my curiosity and looking into it I found out it's probably Hydrocephalus related.

I work for a division of Kroger and each store's music is based on the typical ages of customers. So the music that plays at the store frequently might not be played at all or very rarely at other stores. I worked in the backroom for almost 2 years because my primary and usually only job was doing prep work. Ever since I started working on the sales floor again during the last year and a half I've been paying a lot more attention to the music my store plays. It's seems like they've changed the music they play but it may also be that I can focus on the music that I don't work in the front end of the store anymore. The music that catches my attention the most is from the late 90's when I was in Junior high. Most of the bands and songs I recognized right away but there's a few that I had to look up either with the Soundhound app on my phone or looking up whatever lyrics I could remember on Google. One of those bands is Fastball, and this band specifically I never would have remembered them if my job didn't play their music. They had one song that reached the top of the mainstream rock chart in 1998 which is the one this post is specifically about. "The Way" and another song from the same album "Out Of My Head" reached the billboard top 40. Two others charted as well but not in the top 40 and probably aren't recognized as well. Those two songs are "Fire Escape" and "You're An Ocean". The first 3 songs were all released around the same time from their album "All The Pain Money Can Buy". The 4th "You're An Ocean" was released a couple years later in 2000 off their album "The Harsh Light Of The Day". Their 2000 album was the last to be released on a major record label and didn't do very well compared to their success of "All The Pain Money Can Buy".

I've brought up this band and a couple others recently and while most don't remember them at all, I was reminded that there is a back story to their more successful song "The Way". I looked more into it and the song is about a elderly couple Lela and Raymond Howard. They left their home in Salado, Texas in June of 1997 heading to the Pioneer Festival close by in Temple, Texas. Lela had Alzheimer's and Raymond had brain surgery recently and was started to show problems from that including memory problems and becoming disoriented. They were found 2 weeks later dead in a ravine near Hot Springs, Arkansas. The bassist for Fastball, Tony Scalzo read articles about the couple and came up with the song. He already finished by the time he learned that the couple had passed away. Scalzo said that "It's a romanticized take on what happened" and that he "pictured them taking off to have fun, like they did when they first met."

What sparked my interest in the story was the mention of brain surgery. When I looked into it I kept on finding the same article about the song and the story of the couple just posted on different sites. I decided to try to look even deeper and found out that the surgery was to relieve swelling his skull after the car accident. The first thing that came to mind was Hydrocephalus but since I can't find any more information on it I still can't be sure.

Thanks for reading, I've mentioned this before but I plan on writing more about this specific topic again soon. The problem is that most of the ideas that have to do with this subject are ones that involve a lot more research.

 


http://www.songfacts.com/detail.php?id=3701

http://articles.chicagotribune.com/1997-07-14/news/9707140050_1_found-festival-dense-brush

http://www.texnews.com/texas97/coup071497.html

Message to Bruno Mars

I'm going to do something a little different for this post. I got a message on Facebook from someone asking me to help her to try to contact Bruno Mars so her brother can meet him. I'm using my blog for this instead of the domain name I share with a friend because of plans to switch over to a different domain host in the future. Below is the message I received word for word. People can either contact me with the e-mail address provided on my blog or to Erica at monie62713@gmail.com

To whom it may concern, My name is erica ramirez I am trying to contact anyone who is willing to help my brother nicholas he is 14 years old who is currently going through the process of getting dialysis due to renal failure since the day he was born he was faced with many challenges being diganosed with hydrocephalus (flatting of the head) at 4 mo had a shunt placed and many reconstructive surgeries to round out his head. At the age of 5 he had a stroke and was diagnosed with moyamoya this disease is a rare progressive cerebrovascular disorder caused by blocked arteries at the base of the brain can be described as a “puff smoke” because the look of tangle of tiny vessels formed to compensate for the blockage. at this point he has one kidney that is shutting down which brings me to my point his only wish through this all is to meet bruno mars and I'm not sure how to go about making this possible but my family and I are trying everything possible to help his wish come true even a simple phone call would be great if there is any resources that you can provide to help would be greatly appreciated!