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OK, I had a Neurologist Apt. on June 22nd as you know if you read my last post. We agreed to have some MRA’s/MRI’s scheduled and performed. That should only take apx. 3-6 working days cause the medical Dr’s. office has to get authorization from the insurance company first in order to schedule it. Yes, I have insurance now. After a week, I began calling the Dr.’s office to get an update and push them along. Thing is, nobody at the office ever actually answers their phone. It goes to a scheduling operator first & then I get transferred…. to an answering machine. I’ve left about 10 messages in the last 2 1/2 weeks and I’ve gotten not ONE returned phone Call!!! I’m dealing with the same, but new,  medical nuisances. They’re just in a new manner.

All the while, my head has been pounding! I take that back… just a few days (like this one) it has been highly intense. The other days are tolerable. This pain, the intense pain, raises many FEELINGS. Obviously the pain is one, but familiarity makes me scared! So much time as passed and I still do not have a definitive answer. I’m not starting over, but it certainly feels like it.

I finally got someone on the phone last Friday, but of course who I need to deal with was and still is out of the office until Tues. July 13th. As far as I am concerned, this is service, this non promptness, not returning phone calls, etc. is unacceptable… I suppose I will literally go to the office tomorrow and make this happen.

All the best,

Sabin

We are currently at ….

$7,851.81

July 12th, 2010

Things have calmed down quite a bit since the 2 fundraisers have come and gone. I had my awful apt. with Dr. Carpenter at Wash U. in St. Louis that went nowhere. I have sort of hit a cross roads. I mean, I feel much better and have regained many areas of my body and mind back to a functional state. I am holding strong to the strict diet and still taking blood thinners (aspirin). My heart rate is still high, I still get lethargic spells at akward times,  & my head pain is actually back. It’s not like before, but very similar. I have had it for 2 plus weeks now. It much less intense and just to the left of where it was prior to the stroke. It comes and goes everyday unlike before when it was constant. Nothing seems to be associated with it from what I can tell; like stress, being tired, hungry, etc.

I have an appointment scheduled with a new Neurologist here in Las Vegas on Dec. 1st. His name is Dr. Cohen. He is actually more of vascular neurologist which studies more of the diseases that can affect the nervous system and disorders of the veins and arteries.

I have also started another fundraiser via http://www.giveforward.com The website could be a huge benefit to any of you in need without going to the exstent that I have with this one. Basically, you can tell your story, or a family member’s story, best friend, etc. You can even set it up for a group or an organization. For instance, A lady was in need of a transplant and received over $40,000! Dang!

I have set mine up as http://www.giveforward.org/Sabin. Now, people can of course still contribute through this site, but I thought that having another couldn’t hurt. Plus, you find yourself wanting to help others cause there are tons of fundraisers on there, or you may want to set one up for someone you know. THE KEY is to spread the word of the fundraiser website as much as you can through your email contacts, twitter, facebook, etc.

Thank all of you that have supported me from the early on by making a difference in your own way!!! I am doing pretty well but still fighting and still scared until answers are given and the pain is no more. I mean, I was complete fine before the stroke on June 24th besides the head pain. Well, here I am again in almost the same situation…. The unknown is scary.

Well… That appointment was a complete waste!!! I am so frustrated. I mean, the first question Dr. Carpenter asked me was, “What can I do for you? What’s the problem?” Are you serious??? I had 3 phone conversations with stating that I was a cash patient, traveling to see him, and did not want to unless he had something new to bring to the table! He had nothing. Nothing!!!! Why did he even see me? Knowing that I was a cash patient? Hell, maybe he didn’t know. Poor communication in their office. I’ve had way too many doctor visits getting the same responses. He even started speculating with saying he was. I am, UGH, so pissed! He could have been helping someone else instead of taking advantage of me and doing more unnecessary billing! He said that it wasn’t a waste of time… I asked him it was a good use of time then and he only repeated things that were in my case or that I already new. He didn’t go over it prior as I was told and it was evident. I am just going to become a neurologist and have a practice called No B.S. Neurology~! Seriously, why not.

Needless to say… I am fuming man!

-Sabin

I have not had to deal with any symptoms our take any meds as usual. Last Friday was a warning sign though! I spoke with my neuro nurse and explained everything to her. She was requesting that I had the record docs from the ER I went to sent to her. I don’t understand it because I explained to her that they did absolutely nothing and the Dr. Anderson report can’t shed any new light but I did it. This talk was on Tuesday and Dr. Aguilar wasn’t do back until Wed. Regardless, I have not heard anything from them yet.

I also had my records sent to 2 neurologists that are willing to look further into my situation. I is based at Cleveland clinic and the other is at Barnes in StL. I am also waiting to here back from a good friend about a possible another in StL. Because of what I felt on Friday, it is hard for me to believe in a vertebral artery dissection! The MRI/A’s I had on Aug. 14th showed nothing. The TEE showed nothing although it was labeled as limited by the Mayo clinic and I am scheduled to have another on Oct. 16th. I also feel a PFO (hole in the heart) is highly unlikely as well. That is why I have been looking into Syndromes & Diseases now. Dr. Nicola had a brainstorm and tested me for subclavin steal syndrome on Tues. It’s quite rare and unique, but it turns out as another item to cross off the list. It was cool to learn about though. Check it here if you wanna know more. http://www.answers.com/topic/subclavian-steal-syndrome-1 I sent the report from the Mayo clinic about the TEE to my cardiologists here too, Dr. Mock.

I can’t explain how excited I am for my trips coming up to StL and Chicago!!! I am mega pumped to see all of you! It’s hard to put into words or express how so many people have been there for me over these past 2 months. I know I won’t see everybody and wish i could cause I would definitely like to. The power that my friends and family have expressed has done so much for my will and positive attitude. Not to take anything away from my friends in Vegas at the same time. Vegasans are just as equal and too have done many great things for me several times as well! The committees have put countless hours into these events. Please help me congratulating them on organizing these great events!!!

-Sabin

Also, a note from Kelly W. and the Alton Fundraising Comittee:

Hey Golfers! Don’t forget to get your registration form in to reserve your spot! Also, if your company would like to sponsor a hole or your family would like to sponsor a cart, please let us know soon so we have time to get your sign ordered!
Thanks Everybody and can’t wait to see ya there!
Kelly

Golf Fundraiser info for Sept. 19th below:

The Sept 19th Fundraiser has been established for Alton. Please download the 2 flyers information as well as donation info needed for silent auction and raffle items. Thank You

Volunteers are needed to work the Fundraiser on Sept 19th!!! If you can help,please contact Kelly McGovern Weirich. Her contact info is on the flyers below. Thank You!

http://www.facebook.com/event.php?eid=105635087613 This a link to the Alton Face Book  Event

–Download Me–>Golf_Tournament_Reg_Form<–Download Me–

——-Download Me–>Fundraiser_Flyer<——–Download Me–

“Sabe” the Date Fundraiser for Sept. 26th Below:

The September 26th event has been established to be held at KinCades!!!  An“Evite” and “Face Book Event” was email and posted as well for the possible head count. Please feel free to invite anyone that is not on the list when that goes out. Thank You

http://www.facebook.com/event.php?eid=140010681135&ref=ts This a link to the Chicago Face Book Event

————Download me—> Sabe the Date V.2<—– Download Me—————–

Many and all types of gifts are needed for the fundraisers!!!!! Please download the flyer and get in contact with the appoint person to know where to send things. If you have problems, you may contact me as well. Thank You!

We are currently at …. $5,978.03                                Sept 10th, 2009

Check the Mayo page for the latest.

Click Mayo up top or follow the link below.

1:15pm Pacific Time

https://sabinsstrokeofgenius.com/mayo-clinic/

Last night and today are the first days my head has actually hurt in a different area besides the stroke on June 24th. Last night it was still in the back but significantly higher. Around the crown of dome man. Today it is the front left. It has always been the base of the back of my head or the front right! When I had the stroke and suffered in the waiting area for 5+ hours because admitting was not even on there D game that day, it went from all areas of my brain. Each taking about an hour each has I sat there holding it where it hurt. Meeting with Dr. Chamian today and my dad is leaving. I am hoping for some insight but quite optimistic.

-Sabin

I am doing much better and noticing more and more about what changes or effects I am faced. I originally thought only my speech was effected in my motor skills- I just talk slow and sometimes forget what I am even chatting about and………Ha. It is usually pretty funny. That part is getting better though. But here is a new one. I sat down and turned on the PS3 to play some Street Fighter for a little bit. It’s like my daily ritual to take a break. 5 mins or 50 mins. I never know what I feel like. I turned this sucker on and loaded it all up. When it started, Man, my eyes and hands couldn’t keep up with anything. It was so fast!!! I couldn’t believe it. That was a realization and eye opener man. I have gotten better at that too, but sometimes my mind wants to do something and my hands are slow in catching/reacting. I have all these 9 year olds talking trash me and telling me I suck in their new generation slang. Man it sucks! I will be up with the times on that though. Ha.

I have been trying to ween myself off of the meds so I don’t get addicted or dependent. I pay the price at times cause the head pain will come quick and then there is not much I can do to make it leave! I take the meds then, but it might hurt for hours after that regardless. Man, I just want some Dr to figure out why I have the pain & tell me what the hell the cause is so a proper treatment can be established!

Thx everyone for your notes and donations!!! I like hearing from you all!

-Sabin

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Sabin Orr

Welcome! On June 24th 2009, I suffered a Stroke that was the Genius behind this spawning! Here, people can stay in tune with my recovery, make comments to me and each other, share ideas, get involved with fundraiser events, upload and view pictures, make a donation, or just give positive support. This has been such a tragic experience, but the response of friends has been overwhelming. It makes me feel so special that so many people care about the state of my well being. I have a long road to climb and make headway each and every day. Your notes, prayers, and good wishes via email, text, and facebook really gives me strong support in such a positive inspiration. I am lucky to be surrounded by so many caring individuals. Thank You ALL!
(A very special BIG Thanks to Katie McGovern for getting this started!!! Thx Katie:)

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