Traveling alone with Hydrocephalus (and getting back into writing my blog)

This is the first post that of several that I'm backlogging so when I do eventually post this it will be at least a month or two after I actually wrote it. I got burned out but kept on posting for a while after usually not actually posting something the day or even week that I had planned to. When I went on the adventure this post is about I ended up abandoning this blog altogether and have only written one substantial post since July. I enjoyed not having to think about it on a regular basis to keep on top of it and I plan on writing it now in a way that I don't have to anymore.

In August I spent two days traveling via Greyhound bus from Arizona to Iowa and then back two weeks later to be with one of my best friends for his wedding day. I wasn't told I couldn't fly and I haven't been given the impression from my neurosurgeon that it would be in the past. I am however having shunt problems and the idea of that and elevated pressure made me feel uncomfortable. Also not counting meals taking the Greyhound is usually half the price of flying. Some people with shunts have problems with flying but others have flown many many times without having a problem. If you want to know if you can fly or not your neurosurgeon would be your best source the majority of the time.

The other problem was that it was my first time traveling out of state (I've gone up to Phoenix a few times alone prior). I really didn't want to bring it up to random people I sat by on the bus or especially in stations so I got a medical id bracelet instead. If something went very wrong my bracelet would have been noticeable and I had all my contact info in my wallet. Of course it would be more risky for people with other conditions like epilepsy for example or if their shunt malfunctions more on a regular basis. I made it up there safe and really got to unwind for a couple weeks.

My anxiety level because of the smallness of the town and not knowing other people except for the two people I was visiting and a few others I met while up there, I'm sure it would have had the opposite affect with some people. I felt noticeably better when I was up there except for allergies because of the lack of pollen in Arizona, and I slept better. I made it up there and back safe and I took advantage of the medical id by going alone to the Hydrocephalus walk in Phoenix in October.

Taking a break from this blog, but I plan to start back up at some point.

I've had a lot of traffic on my blog since I stopped writing regularly a few months ago. It's inspired me to keep at it, but I sort of burned myself out and if I do write a actual post I don't think I'll be able to do it on a regular basis. To anyone who had found my blog through a specific post and decided to look more into it or have been following my blog, I'm not going to end it anytime soon but it will probably be a while before I start posting again. I'm going to start backlogging before I actually start posting again so hopefully time won't sneak up on me so fast. In the mean time I'm focusing on another things and get myself in a better place physically, mentally and emotionally. I know this blog has helped others and it's helped myself as well, but it's also affected me negatively in a way, making me think of the condition more than I should. I'm gonna try to start writing about others things and possibly starting a 2nd blog along with this one.

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