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!

Guest blog (Berkley's life story)

Hi, my name is Berkley, I'm 18 years old, and I'm from Ontario, Canada. So, I was born with hydrocephalus, which is caused by an accumulation of fluid in the ventricles of the brain. I have a shunt that drains this excess fluid from the ventricles to my abdomen where it can be absorbed properly. I have had 21 brain surgeries, and 27 all together because of it. 15 of those surgeries have been in the last 3 and a half years. Before I was even one year old, I had 9 shunt malfunctions until a second shunt was placed. I was fine from my first birthday to around my 15th birthday. I had shunt tube lengthening when I was 9 and ended up having emergency surgery because I was playing soccer at school and was pushed into the ground. This caused my stomach incision to come open. In October of 2010, because I had been feeling nauseous in the morning since about July of that year, I went into the clinic to have a shunt series, and a CT scan done. In November, I went back to review the results with my neurosurgeon. She then informed me that the shunt tubing was disconnected at my neck, so I had surgery the next week to reattach it. My shunt tubing was worn on both sides (I had 2 shunts at the time) so my neurosurgeon decided to take out the tubing on both sides and replace it with new tubing. 

In the months following, I developed symptoms of chest pain when I was breathing deeply, a constant headache, abdominal pain, and shunt pain. In March of 2011, I went into emerg with pain in my side. They suspected appendicitis so they took my appendix out. On April fools day of 2011, a constant headache started. A few weeks later it hadn't let up so my mom took me into emerg again and they admitted me to do some tests. They did a shuntogram (basically a spinal tap in the shunt rather than the spinal column) and a couple of days later, they put an ICP (intracranial pressure) monitor in my brain so they could monitor the pressure in my head. Right when I came out of the operating room, my neurosurgeon found out that I had a shunt infection. She finished the monitoring and then gave me the options I had for treatment, and I opted for the surgery over 2 months of IV antibiotics. I was absolutely terrified because this was a surgery I had never had done before, and I didn't know what to expect because they'd have to drain the fluid outside of me into collection bags. I was expecting something completely different from what it was actually like. 

They put the drains in, and gave me heavy doses of IV penicillin over 13 days. When it came time to put my shunts back in once the infection cleared, my neurosurgeon decided that she was only going to put one shunt back, remember, I had issues when I was a baby until they put the second shunt in, then I was fine until all of this. A few days after they put the shunt back in they discovered that the tubing was balled up in the wrong place in my stomach so they had to go back in and fix it. I was discharged the next day.

 Over the next few months I had developed more symptoms; dizziness when standing, nausea, the headache and a bunch of other things I had with the infection were still there. I had been admitted over the summer a few times for observation, and a different neurosurgeon finally decided to try a VP programmable shunt. They didn't believe it would make a difference, but they still put it in, and did another ICP monitoring at the same time. This all happened to be on my 16th birthday. In the months following that, I still had the dizziness, constant headache, now shunt pain, and trouble sleeping with the new shunt. I went to see a different neurosurgeon in November of 2011 who did nothing for me, and said that my headache would go away once my body got used to the new programmable shunt I had placed. I had been on multiple different medications to help with the headache and nothing touched it, and still doesn't. 

In January of 2012 they did another ICP monitoring because I developed papilledema (swelling of the nerve in the back of the eye). It is also a sign of increased pressure in the brain. The numbers were fine (typical for me) so they still have no idea what is wrong or what they can do to fix me.  

Since the pressure monitoring, I had still been dealing with these medical issues. I was sent to a new neurosurgeon in December of 2012, who, in the beginning, was unsure of what to do for me. He originally thought of once again doing an ICP monitoring due to the fact that he's at a different hospital from my original surgeon, and wanted to see readings on his own equipment. After this appointment, we did not hear from him for more than 6 months. When we finally did in July of 2013, it was because of the fact that the headache had become even worse. I was admitted the same day, and had an MRI the next morning. My neurosurgeon, upon reviewing the results and comparing them to past CT's and MRI's, realized that my ventricles were slightly larger than at times when I was well. Although there was very little change, he decided to go with this idea, and opted to do exploratory shunt surgery. Through doing this surgery, he discovered that my shunt was blocked, and had likely been since shortly after it was placed in August of 2011. He replaced the component of the shunt that was blocked, and I was sent home a couple of days later.

After this surgery, once I had healed a little bit and the pain from the surgery was gone (about a week later), I realized that my headache was no longer there, I was so happy! Life felt like it was beginning to go back to the way everything was before all of this started. On August 4th (A day after my 18th birthday), the headache returned. I went back to the hospital the next day, and had another MRI done. This came back with very clear results, showing that my ventricle that did not have a shunt placed in it anymore, had blown up to be almost 2 cm in diameter. This made diagnosis very easy, and led to another surgeon who was working while my original surgeon was on vacation, to decide on placing a second shunt back into this ventricle. It was successful, and my ventricle went down in size right away. After the surgery, my headache was still there. My neurosurgeon was once again unsure of what to do for me, as I had my second shunt back, and my ventricles had shown to still be very small (slit-like at the time) based on MRI's I was having done monthly since the second surgery that summer.

The incision from the surgery in July had never healed properly, so on January 21^st of this year, I went in to have an incision revision done to reclose it. After this was done, I was sent home on antibiotics. When I was in the OR, a shunt tap was done. A couple of days later, we got a call from my neurosurgeon who told us that my shunts were infected, along with the area around where the incision that never healed was. They asked us to come back that same day to re-do the shunt tap to make sure it wasn’t just a contaminant that interfered with the culture results. The next day, we received another call from my neurosurgeon because the results had already come back with a fast-growing bacterium. I was told to come back to the hospital the next day (January 31^st) for emergency surgery to have external drains placed. I had a PICC line placed on February 3^rd, and was put on vancomycin and meropenem to treat all of the 3 infections that I had (2 in the shunts, and 1 in the incision). The meropenem was stopped a couple weeks later because they didn’t think that it was helping with anything, but I was kept on vancomycin for 6 weeks.

On February 12^th, I had the ETV (Endoscopic Third Ventriculostomy) procedure done in hopes of not requiring a shunt once the infections had cleared up. It basically involves burrowing a hole into the floor of the third ventricle to allow fluid to flow through it, and this theoretically allows for the CSF (cerebrospinal fluid; the fluid that protects the brain and spinal cord) to absorb within the brain like it would in a normal person. After this surgery, I ended up with aseptic meningitis (blood in the CSF), which is extremely painful. I was on steroids for a couple of days, and was left to let the blood clear from the CSF on its own, which was not a pleasant process. Over the next couple of weeks, my drains were clamped and unclamped a few times to see if my body could handle absorbing CSF the way a normal, non-shunted persons body does. Even when the drain was open, I leaked CSF from the drain insertion site. I had to have extra stitches put in, and this didn’t seem to fix the problem. We were told that when this happens, the only real solution is to have a shunt put back in. So, on February 27^th, when Infectious Disease had finally cleared me, I was booked in to have a new shunt placed. This time, it was going to be just a regular fixed pressure VP valve (this is what I had up until my 16^th birthday), rather than a programmable. After the shunt was placed, I was unable to sit or stand without getting sick, and had severe neck and shoulder pain. They figure that it was caused by there being a lot of swelling and blood along the shunt tract due to a reaction from where the shunt was placed, as I had never had a shunt in this ventricle before. The only relief I had from this pain came when I was lying completely flat. I was sent home on March 1^st on PICC line antibiotics. A week later I returned to the hospital still in as much pain as I was before I was discharged. They did an MRI, shunt series (x-ray along the path of the shunt tubing), abdominal ultrasound, and shunt tap. These all came back to be normal, so I was sent home after consulting with the pain team who told us to try a muscle relaxant, which didn’t help with the pain at all. I had to lay flat as much as possible for just under 3 weeks before the pain finally subsided enough for me to function.

I have now been transferred to an adult neurosurgeon here in my city, and am waiting to see him still. I'm hoping that with this new surgeon, something will finally be figured out, and that my headache will go away.

 My Life With Hydrocephalus: Berkley