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

Today is the Anniversary date! Not sure if that’s what ya call it or what not. Plus, I’m not really sure what to do about it. I mean, it’s not something that I wanna celebrate. I kinda do, but what exactly am I celebrating??? That I am alive? That would be like cheating on my birthday wouldn’t it? ha ha. Joking aside, It is a date of significance for obvious reasons. I have persevered and fought with many obstacles… some are finished and some are still lingering (I’ll explain here later)

Once again, I THANK all of you for coming to my side in each of your own ways!!! Some texted, emailed, phoned, etc everyday while it pulled others out of the wood works that I have not seen or spoken to in many years. Countless words of encouragement that I took to heart and used as pure fuel to stay positive. What can I say about the 2 fundraising committees that formed??? WOW! You guys should be so proud of what you accomplished! I obviously was, but it was an eye opener to see and say what genuinely friends I have. It was simply shocking and mind-blowing to be the recipient of so much work. That holds true to all of you as well that made donations on here, at the events, or in person to me!!! That money has and did make a huge difference. Plus, I am still utilizing, what’s left, today. This story is very Hollywood Esk because of all the avenues it hit… Young Stroke Victim, Insurance, Hospital Ethics, Humanitarianism, Donations, Debts, No Answers/Reason, Pain, Drugs, Various Medical Facilities, This website, other websites, and more and more.

Recently, I had a visit with the Hematologist, Dr Nguyen (blood dr.) & a Neurologist, Dr. Cohen. Of the mounds of blood work I’ve had done & I mean a ton! One of the main reasons I see Dr. Nguyen regularly is to keep an eye on my white blood cell count because it is low. 3.5 in July 09, 3.8 in  Dec 09 and 3.9 in June 10 with a reference range of 4.8 – 10.8. The other reasons are to stay aware and preventative because of the cardiovascular blood diseases and such are evident throughout my Father’s side.

The Dr. Cohen visit went something like this: I have not been to a Neurologist in almost 6 mons & he was the last one that I saw that had not said there is nothing they can do. He also agreed with Dr. Aguilar at Mayo clinic and believed I suffered a Vertebral Artery Dissection (which I disagreed with) and told me to carry on normally… He walks in and goes, “I thought I told you I didn’t want to see ya anymore:)” I told him that I really didn’t want to see him either!!! Touche. The fact of the matter is that these head pains are still persisting and in the last 2 months have become more frequent or more intense. They are always, again, in the back of my head at the base. It’s now slightly to the left, as before, it was slightly right. Sometimes it ranges up to the crown but usually stays pretty consistent to the base. Before, prior to the stroke, the pain would sometimes create a horn like shape and hurt in the front right of my forehead. Also, I’ve had a few dizzy episodes that were just like when I suffered the stroke. So, familiarity is there to notice the difference from these types of feelings and I unfortunately too familiar to know the difference.

After the Q/A session, he was taken back to learn that these symptoms are persisting and gradually getting worse… He then said that pretty much disproves the Vertebral Artery Dissection (Thank You!) and wants me to have an MRA from the Aorta (Chest) to the head as well as an MRI on my head. Which is exactly what I wanted. I was glad that he felt it was necessary instead of me requesting it. Meds are an option for the pain, but I do not want mask the pain (or take daily pills) because this is my only alarm to be aware that something is wrong. Plus, these drugs I got are heavy hitters man! They jack me up! I am not waiting-They should call me this week for an apt and the tests should take place in a matter of a few weeks- I hope!

I appreciate all the support you have shown me this past year & the continued support you give!

I apologize for not being as persistent with updates as I was in the past. The fact of the matter is that I felt like I didn’t have any news worthy updates to post regularly… that’s because, for the most part, I have not been experiencing episodes of pain, dizziness, headaches, etc. I have been actually feeling pretty well. Given that, I do still go through all the ailments as before. They are just not on a regular basis. The occurrences are more often to a few times a week rather than every day. It’s my feeling that will subside to weeks, then months, and hopefully years-to never!

Here is a note a wrote down about 4-5 weeks ago and was one of the more severe :

“For the past minutes…I am experiencing a dizziness feeling while at the computer this morning. It’s been quite some time since I have had anything remotely close to this besides the stroke & TIA’s. It feels like being on a hope (I meant boat) that rocks back and forth. Also, I have to be looking at the keyboard (in order not to fall over or outta my chair). My head and neck is straight on and my head does not hurt right now, but my space-balance-orientation feeling is definetly skewed.”

I continue to keep a positive attitude and not stress over anything in almost all situations…. besides the passing of my father. That’s a different tale! I am consistent with my low salt, no red meat, no caffeine, no alcohol besides some red wine, low sat fat, and low sugar. I work out about 4-6 days a week focusing on cardio, weights, & core strength. I’ve gained a few Lbs. that I lost in muscle and some fat. I got to 4% body fat and looking a bit emaciated… like Danny Walhberg from 6th sense! I’d take my shirt of and post a pic, but there are way too many chics that read this:) LMAO! Plus, Charlize would might winch;)

My Run

Since I  have been going to the gym regularly post stroke does and working different areas to to strengthen my heart, blood flow, and core for my chronic back, I having been feeling cool. I decided to try out running outside for distance and gage how I do. This is not something I ever did for fun. I only ran in the past when a sports ball was involved or I was being chased by the law:) ha ha. Naw really, not might thing to do… But I had an urge to do it. My stamina was killer. I never felt like I was breathing hard! Surprising… My legs, feet, and toes… different story. They were stiff and sore about 1/2 way into it. I was determined to finish and not stop to walk. I kept telling myself how thankful I was to be alive, I have another day, loving and thanking all of my friends, continue to take care of myself, keep pushing-keep pushing-keep pushing. Thing was, it was really pretty easy. OK…. What is your guess on distance and time??? Remember, I haven’t done this in over a year easy!!!  More like 5+ yrs. I only run when….. ya know. 1 mile, 3 miles, 5 miles, 10 miles…. I did 3.8  Miles AND it only took me 34 min. I am mega proud of that!!! I know my legs won’t be & I also know I won’t do it again for quite sometime. Plus I got some fat ass blisters on my toes! Ouch.

Lastly, many people from the Riverbend area of Alton/St.Louis as well as many other areas came together to support me in a time of need that I will forever be grateful for. It’s time once to show support and take a few minutes not to support me, but to aid children of that community. Alton has an extensive heritage that I am proud to represent. The town has a chance to win a PEPSI contest for 250,000 to

Build a youth center for education /entertainment in the RiverBend.

Please take a moment to follow this link and place your vote for the Riverbend Children AND when you are done, push others to do the same. Post the link in your facebook status/twitter account or copy and paste mine in yours.

http://www.refresheverything.com/RiverBenderCommunityCenter

We are currently at ….

$7,851.81

Apr 23th, 2010

How have you been? What treatments are you doing? What medications are you on? What is next for you??????’s Those questions have to be the most popular ones I hear when talking to people. I don’t take any medication besides baby aspirin daily which is only 81 miligrams. Right after the hospital I did take dilaudid for pain and meclizine for dizziness. I got off of both after about 2 weeks. The dilaudid didn’t do jack and my dizziness had subsided to certain body movements. I later took percocet which is no joke! It was about 5 weeks after being in the hospital after the stroke that I was prescribed percocets strongest dose. That was the first time the pain in the back of my head was completely gone after 60+ days of having it. After 3 days in a row, I stopped taking the Percs (if you ever have you know why I quit) and the pain stayed away for about a month or so. From then till present I still have a head pain towards the back. The interesting thing is that it is NOT in the same place it was previously. It’s a new consistent spot! It’s not as intense at all either. It’s closer to the crown of the head and slightly left. As before, it was the base of the head and slightly right. I am about 7 mons. post the stroke and still deal with these pains. Now, some neurologists have placed it as a back lash from the stroke. Come on Buddy…. Come on. This was the major symptom prior to the stroke and the same feeling existed after the stroke. Now it has just moved a bit. No speculating please! A simple, I don’t know is suffice.

Next steps and treatments??? Great questions. They are difficult to answer because I have not been given a treatment or planning steps. Sure, I have a strict Olympian diet (they fail drug tests though too) & work out regularly which helps maintain low blood pressure, cholesteral, & low impact on my heart. Plus the many multiple benefits that exercise brings you. How can I get on a treatment when there has not been a diagnosis given??? Plus many Dr’s. just don’t know & when they see the many tests that come up neg. I usually get a response of them telling me how healthy I am and should just live my life. Well….. when your dad dies at 65 from stroke, your uncle at 38 from a stroke, another uncle at apx 34 of cirrosis of the liver, your sister with APS, your grandpa at 43 from ????, and your grandma had several heart surgeries, sorry if I just don’t wanna except that brush off response. Cardiovascular diseases, issues, complications, etc run unfortunately heavy in my fathers side. Yes, that is all my father’s side. My mother’s side are all legends!!! They live into the 90’s as sane as can be. I am kinda hoping my internal battles can be powered with the Kiel side rather than the Orr side:)

I was just introduced in Fibromuscular Dysplasia.

Fibromuscular dysplasia (FMD) is a condition in which at least one of your arteries has an abnormal cluster of cells growing in the artery wall. This cluster causes the artery to narrow, which can cause damage to the organs that receive blood through the narrowed artery. Fibromuscular dysplasia can cause a number of complications, such as high blood pressure and aneurysms, if left untreated. Fibromuscular dysplasia appears most commonly in the arteries leading to the kidneys. Fibromuscular dysplasia can also affect the arteries leading to your brain, abdomen, arms, and legs. While there isn’t a cure for fibromuscular dysplasia, it can be treated effectively.

If the arteries to your brain (carotid arteries) are affected, you may have:

  • Dizziness
  • Blurred vision or temporary loss of vision
  • Ringing in your ears (tinnitus)
  • Neck pain
  • Chronic headaches

Premenopausal women ages 14 to 50 are most likely to develop fibromuscular dysplasia, although older women and young adult men also can develop the condition. It’s believed that fibromuscular dysplasia has a genetic link, although researchers don’t know what genes could cause the condition. Tobacco use (Which I used to do) and some medications may cause irritation in an artery, and cause the changes in blood flow to become more severe.

Fibromuscular dysplasia can cause a number of complications. These include:

  • High blood pressure. I don’t have!
  • Chronic kidney failure. I don’t have- That’s a given
  • Dissected artery. Much evidence leads to a possible dissection, but nothing concrete. PLus I had a TIA after the major stroke on June 24th.
  • Aneurysms. My father had one & it’s possible my uncle as well.
  • Stroke. If you have a dissected artery leading to your brain or if an aneurysm in an artery to your brain ruptures.

Learn more about Fibromuscular disease from cleveland clinic. One is about to open in Las Vegas which I will plan on becoming a patient of.

Learn more about Fibromuscular disease from the mayo clinic.

The best tests are ones that I have had. Duplex scans of carotid and vertebral arteries, MRI’s & MRA’s CTA scans. I have had probably 7+ Dr’s look at my tests and this has never came up. I do not know if it is something easily looked over, but from what I have read. One of them should have noticed a narrowing or bubbling in an artery. If thats the case they are missed…….. Do I have a case?:) Ha

So, my treatment??? I’ll get annual less evasive scan tests done and continue on my strict diet of no caffeine, no alcohol (low moderation), low salt, no red meat, & low sugar. Continued talks and research of my own & of course feed off the mounds of support sent my way by so many of you.

-Sabin

R.I.P. dad, Robert N. Orr, 7/30/44 – 1/3/10

Dad at his moms in 1988

As many of you know, my dad’s brother, my uncle Roger had a stroke at the age of 38 that was fatal. My contact with him over the years was minimal because of my young age and his residence in another state. Roger & I had some similar symptoms and life styles towards nutrition from what I know. I am now super strict about my intake, but prior to that it was similar.

Uncle Roger in 1988

My dad’s diet on the other hand was not! Meat, potatoes, butter, and sugar (soda). My Father has had several strokes with the 1st being very severe about 15 years ago at the age of 52. He had paralysis on an entire side of his body that took him apx. 2 years of Speech & Physical therapy to rebound. He sustained a permanent limp in his giddy up from the onslaught along with other contributing health complications. From that point till present, he had apx. 3 mini strokes that each effected him in different ways. Quite slight but quite apparent to those close to him. He had one just a few weeks prior to mine! Each time, he conquered and carried forward with a mind-set of family first in every situation and his wants & desires for himself were almost non-existent.

On Jan 2nd, 2010 he was out for a night of dancing with his wife (3rd) and friends which is something he did quite often his entire life. As a child, he was an accomplished dancer on skates winning several competitions along the way. In the 50’s, that was a big deal.

Dad skating

His present state had him moving gingerly because of sore knees which produced weak muscles which produces a professional couch potato:)… A happily retired couch potato:) He needed a break from dancing and a huge gulp from his favorite flavor, A Coke. Meanwhile, his wife, continued dancing on the floor but kept her eyes peeled on him. After his gulp, he set the glass down, and then fell to the floor…. His wife thought that he had lost his balance, but soon realized that this was not an accidental tripping. Miraculously, he was able to rise to his feet but in a complete days of no consciousness of reality. Your mind goes into a complete state of trying to identify and process every element in your surroundings as well as trying to understand your own physical state. A feeling that I know all too well. Repeated questions of ,”Are you OK?” were bombarded his way. Meanwhile, he was bleeding excessively from his mouth and nose. Paramedics rushed him to the hospital where he underwent brain scans & testing to find answers. The hospital crew was acting diligently with their knowledge while my dad was fighting and holding on as always. He was a man with a large hospital rap sheet. As his wife said, “he always came home.”  The visit wasn’t the norm and had an unfamiliar ending… My dad had suffered a brain aneurysm that ruptured known as a subarachnoid hemorrhage in the back of his head. While it is not defined as a stroke, it is certainly in the same class.

My Dad, sister Kelly, & brothers Kris & Brian (left)

An aneurysm is an abnormal widening or ballooning of a portion of a blood vessel. A cerebral aneurysm refers to a blood vessel within your brain that weakens over time and undergoes such widening. This usually occurs at the junctions of the large arteries at the base of your brain, in an area called the Circle of Willis (its on my research page here). As the blood vessel weakens, it begins to bulge out like a balloon. Often, as an aneurysm develops, it forms a neck with an associated dome, or balloon like structure. The larger the balloon becomes, the greater the risk it may burst. You would then bleed into your brain. Each year, for every 100 people with an aneurysm, roughly 1 of them will suffer a rupture.

My dad, baby Mitch & me. Apx. 1982

I am working on obtaining the medical records from the hospital in order to find out exactly which artery was effected. Roger, my uncle, died from a stroke in the back of his head. My father died from a aneurysm in the back of his head. Now I have experience and a past with a stroke in the back of my head. All of my MRI’s show nothing abnormal for me now, but I must make it a point to have scans done regularly for the rest of my life. This will hopefully also influence my other brothers and sister to do the same for themselves and their children.

Recently, I had discussions about the medication my dad was taking. Multiple different kinds for many ailments. Much of what many suffer from today- Blood pressure, diabetes, prostate, cholesterol, & blood thinners. As I do not put the blame on any one thing, I question his Dr. heavily!!! I urge you all to always ask questions to your Dr.s. They are people like us and can make mistakes along the way. Medication is not always the answer. Given my dad’s past, how could he only see a general practitioner? How can one general, non specialist, Dr. prescribe multiple different medications without consulting specialists. My dad had a track record… Always research any medicine given to you and always research as much as you  can on a subject directly effecting you or loved ones. If you find something contradictory, has you guessing or feeling uncomfortable, see another Dr or make calls. Just don’t stop and be content with, “well the Dr. said” so it must be right. Look at me, I have not stopped even though I have credited Dr. at major brain institutions that have moved on.

Dad as a kid in is Hopalong Cassidy Sweater

He was preaching constantly how fatigued he was all the time. Sleeping 12-15 hours a night and napping throughout the day. His memory and consciousness had deteriorated a tad, but enough to tell that he was not the same person I was a custom too. Last week, I researched all his meds for side effects and found that all the ailments he was incurring were possible results from those meds. Of all the information I know regarding strokes, I just didn’t put those symptoms with what was to come. They were all the same, but the medication seemed like the likely culprit. I also looked at the fact he had a mini stroke just weeks before me that would contribute with the black lashes of his current state.

You just always think that your gonna have a next time…

Services will be held at:

Elias Kallal & Schaaf Funeral Home, 1313 Delmar St. Godfrey, IL 62035

The visitation is Thurs. Jan 7th from 4:00 p.m. – 8:00 p.m.

Dad on a horse or pony as a child. One of my favs!

The burial service will be Friday at 10:00 a.m.

Since the release of the article in the Las Vegas Weekly by T.R. Witcher, I have gotten some sincere responses from many. Some uplifting (even though I am not down), some praising my positive attitude, some inspirational, but all warm felt! This entry is a dedication to all of you. To the 100 hundreds of supporters that have always been in my corner- To the close and not so close friends- To the familiar & to the strangers- It doesn’t matter. In this long duration of crisis, recovering, and unknowing, there are no walls, no boundaries, or no limitations. Equally, you have all shown your own amount of compassion, sympathy, & empathy to my case. Still, to this day, it is completely overwhelming to receive the amount of support in the fashion that all of you have given and expressed. Whether verbally, monetarily, or medically, you have helped me in your own way. It’s like I have a union of groupies. Only you don’t expect to be entertained, you insist on being the entertainer. I am lucky to have myself surrounded by so many people with such caring souls. I must have over a thousand messages saying do not hesitate to ask for anything. Problem is, I used to have to hesitate because I didn’t  know what to ask for. In going forward, the 1 thing that I ask is your continued friendship. I have cherished that more than anything during this endeavor. For a peace of mind, please know that I am feeling and doing well recently!

I am slowly getting back into photo. I’d like to gain some clients in the Chicago, StL. & midwest region so I can have more visits back home. Being in that area really helped my moral. Given that, I am always looking for more in the Las Vegas area where I reside. My photo website has been revamped as well. Have a look and pass it on to any one ANYWHERE that commissions photo freelancers or works for Ad, Marketing, Design Agencies and Magazines.  www.orrdigital.com.

-Sabin

We are currently at …. $6,930.930

Dec 10th, 2009

Sabin Orr as the Cover for Las Vegas Weekly

It is so much different being on the other side of the camera for a specific reason… I am used to being the photographer rather than the subject. Subject is the key word, because I was really comfortable in that environment. I mean its mine. why wouldn’t I?  I am used to feeling excited to see how the images I took were applied to the cover, feature, article. This time I had the not knowing feeling of all three since I was the subject! It had me  wondering how someone else sees it, hears it, & comprehends it. I want people to feel the true essence of what I experienced. Learn from all the unpredictable manutia. Become better prepared in case something tragic happens to them, a friend, or a loved one. Everyday was a full blown story in itself!!! Jumping from brain damage, family/friend concerns, relearning mobility skills, being dizzy, sleeping constantly, answering phone calls-emails-texts-facebook & hearing the shock in everyones voice or writing because they can not believe what had just happened. Me too! The greatest thing, for me, was the overwhelming amount of friendship support!!! I will never forget how so many of you helped me in ways that you may not unfortunately ever understand. You all gave me strength daily to maintain my positive outlook.

If you have not read the article, I encourage you to do so!!! The link is below. I can not thank T.R. Witcher enough!!! He did a great job and I can tell he put in all the hard work this story deserves. I love the way he puts my situation into context by relating it to many other entities of the health care systems with facts & examples.

Story links:

http://www.lasvegasweekly.com/news/2009/dec/03/scared-and-vulnerable/

http://www.lasvegasweekly.com/magazine/

Once again, I thank all of you for your mega loads of support and generous donations!!!

Shoot for the weekly. Photo by Beverly Poppe

My research and search continues for the launch of my future non profit organization as well. I am in search of web designer/application programmer. It’ll be a heavy project.

I am slowly getting back into photo. I’d like to gain some clients in the Chicago, StL. & midwest region so I can have more visits back home. Being in that area really helped my moral. My photo website has been revamped as well. Have a look and pass it on to any one ANYWHERE that commissions photo freelancers or works for Ad, Marketing, Design Agencies and Magazines.  www.orrdigital.com.

-Sabin

I’ve had a great time catching up and reminiscing with family, many close friends, and many old friends over this Thanksgiving. It was cool running into so many of you & having the chance to personally thank you for sending me your words of encouragement, donations, support, kind words and care! Memories are sparked constantly reminding me that I have an overwhelming support group of hundreds of amazing people… I mean friends!!! It was also cool to answer your questions about the experience of the stroke and what my my next steps are. Which is hard to say at this point, since I have exercised so many options. It’ll be nice to see what Dr. Cohen has to say from the vascular neurology side. Hopefully, it may ring some bells of familiarity or push him to dig deep for answers. I’ve yet to find a Neurologist that has that fire to fight and search with me… as most of you know!

My head has continued to be unpredictable with the pain coming and going, mild to intense, back left-to left side- to left top. Basically, the whole left side. No sensations, stress, hunger, tired, alertness, diet, or anything effects it. Ya know like if you have a sinus headache at night and the lights from an oncoming car makes it seem more intense. Yah, I got none of that. Most of the time, it really has been pretty mild and I can function with it, but it still makes me worried in the back of my mind. Without answers or an idea of what is wrong, I know that there still is possibility of something traumatic happening again.

I’ll be on the cover and the feature story of a magazine in Las Vegas this Thurs! Pretty cool. I am usually photographing these subjects instead of being the subject. I am excited to read the article and hear everyone’s responses. Hopefully this story helps raise awareness with others, teaches people tons from my experience, and enables readers to see all the positiveness that has occurred from such a tragic amount of circumstances.

-Sabin

The last few days the pain has persisted more than normal. Maybe I am paying more attention to it than normal. Doubt it though! It all never goes unnoticed ya know. It has become a way of life these past months. It would be nice to know the reasoning rather then constant guessing by myself and doctors included. Is it a clot that slowly moves and the pounding pain comes from blood pressure? Maybe it is residual effects from the Stroke? What about the feelings I had prior then? Maybe THESE are new residuals! Ha. Stress, anxiety, money??? Dam, everybody should have these pains then! Ha. I only feel this on the left side and never the right. It is kind of all over too. Also, I  remember when I was in the 5+ hour waiting room at St. Rose, the pain was extremely intense. Harsher than anything ever! Tooth aches, ear aches, back pain… Non of them put a dent in that day! Anyway, the pain that day had circumvented my entire left side even hough the damage was occurring in the base. Something isn’t right….

-Sabin

I have a new slightly different pain emmerging. It has always been the center back of my head at the base of the skull. It favored the right side just a touch. I suppose that is understood since I talked and described it so much. For several days, weeks, periods of time, I have felt and stated to most that I am pain free. That is not always the case and I should do better about documenting here as I have in the past. I’ve been wanting to write everyday but feel that I really don’t have new info to share. I am not seeing any Dr.s on a regular basis, no new research to look into, and no new theories to explore. Anyway, I get these intense yet brief numbing pains now. They are are the left back side of my head, but can almost feel like the entire left side of my head. it may only last about 3-5 secs and then it goes away. It seems odd that it would effect that large of an area. I understand that it may be residual effects from the previous stroke, but I am overly concerned about any and all abnormal head feelings I get! I have not gotten dizzy or lightheaded since my last trip to the hospital. I believe… know that was caused again by my head position & have not been in that situation since. How many times does anyone tilt their head back and slightly left??? Heck, it could be something new by now. I just don’t know.

-Sabin

I hope all had a nice Halloween weekend. I didn’t hit any ghouls or ghosts shindig. I actually did some research and watched a gang load of sports.

I received response letter from Nevada Congresswoman Dina Titus the other day. Good to know that my words are not falling on deaf ears! Responding 4 1/2 mons after I wrote it is a bit tardy, but better late than never. She can not help out monetary wise, but forwarded my case onto the Consumer Health Assistance, Bureau for Hospitals Patients. The letter was dated Nov. 2nd and I got a call from them on the 4th. Congresswoman Titus must have put urgency on this! They explained that they do not pay any bills off but look for other means as well as contact the entities owed and negotiate on your behalf. These Hospitals, Billing Depts. Specialists, Labs, etc. want to be paid upon receipt of the bill and do not waste time. A lot of what the Bureau said they would do is what I have done and what many of you have helped me do with fundraising, applications, phone conversations, etc. It’s good to know these places exist…. but there may only be a little they can do because I (we) have done so much all ready.

Dina Titus Letter

I currently have 2 applications to fill out for 2 bills to try and get some discount established. One of them I was all ready denied for but had another conversation with them and they said to reapply with the new info.

I have always said from the beginning that I would want to help other people and not have this just about me. It took some friends to tell me over and over to just focus on yourself for now. For the  last month I have been brainstorming and pre-conceptualizing what kind of  non for profit charity organization I could see myself building. 2 ideas have arisen that can work with together. Without going into them, let me just tell you what I need presently.

I am looking for a web designer developer that can work in flash and do shopping carts. If interested, please contact me and we can explore what I expect and will need. Compensation, if any, may come in many ways. It can all be hashed out.

I have many battles still with finances and understanding my future, but will save those words for another day. Congrats to all friends that have recently had new additions to their families!

-Sabin

From IL. United States Senator Richard J Durbin

Dear Mr. Orr

Thank You for writing me regarding your brother, Sabin Orr. Although faced with obstacles, Sabin’s unwavering positive attitude towards life is truly inspiring.

Unfortunately, due to the large amount of requests I receive for contributions, I am unable to make a donation. I do wish you the best of luck with your endeavors and hope Sabin continues to inspire others to never give up.

Best wishes to you, your family, and your friends.

Sincerely- Dick Durbin, United States Senator

After a hiatus, I am back. I have not written for a couple weeks because I have had visitors in Las Vegas, but mainly because I have not been sure what to share with everyone. I feel like i do not have great news to gossip about these days. It’s eating at me too. I like having a project to work on and it seems like I can never have just one!!! I am slowly getting back into photo. I’d like to gain some clients in the Chicago, StL. & midwest region so I can have more visits back home. Being in that area really helped my moral. my photo website has been revamped as well. Have a look and pass it on to any one that commissions photo freelancers or works for Ad, marketing, design agencies and magazines.  www.orrdigital.com

My head has been pain free for over a week now! Kinda funny how it comes and goes. hopefully its a goner for sure this time. My energy levels have picked up a bit too. I have been sticking to the strict diet with a few cheats here and there but they are mild far between one another. No caffeine, No Alcohol, No red meat, and Low to No salt. That translate into low sugar and low fat.  Try that if you wanna lose wait. I have lost 30lbs and I was a guy that didn’t need to lose more than 5-10 max! I am still taking blood thinners too.

I have a Neurologist apt. Dec 1st here in Vegas. I’ve never seen him and I’ve gotten to the point of not expecting anything from him. I need someone local and familiar with the case that wants to stay active with it. 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 always said from the beginning that I would want to help other people and not have this just about me. It took some friends to tell me over and over to just focus on yourself for now. For the  last month I have been brainstorming and pre-conceptualizing what kind of  non for profit charity organization I could see myself building. 2 ideas have arisen that can work with together. Without going into them, let me just tell you what I need presently.

I am looking for a web designer developer that can work in flash and do shopping carts. If interested, please contact me and we can explore what I expect and will need. Compensation, if any, may come in many ways. It can all be hashed out.

I have many battles still with finances and understanding my future, but will save those words for another day. Congrats to all friends that have recently had new additions to their families!

-Sabin

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.

After yesterdays debacle, I have cooled down and mellowed out a bit. It got me thinking though for sure! Unfortunately, the pain in my head is more constant than I want it to be. I am able to identify these feelings and know the difference between a headache, migraine, or stroke related pain. This is for sure stroke related pain. It is in a different spot, much less intense than the head pain before the stroke, and it feels slightly different. This one seems like pulsates with my heart beat. Not always though. It can just remain constant. The other thing is that it actually goes away. Compared to the past when I had the stroke and immediately after, it was always constant and never went away. Now, Dr’s have said that I may feel that for awhile, but I don’t feel comfortable with that response. That just seems like they are speculating and don’t really have a clue! Which is true, a lot of times, they just don’t know. Again, I believe there is something going on… Hopefully not though! But, knowing that I can still put my head in an akward position to initiate dizziness, lack of concentration, and disorientation, is enough reassurance that I should have concern and believe what I do.

Where do I go from here??? All Dr’s I have met to this point have no answers and no where to turn. There are always tests that can be run, but if there is not a good reason as to why, I am not going to do it. That will just run the bills up even more. I need a University Dr. Really, I just need a Dr. that is willing to put some heavy time into this case and do some quality research. I spend a lot of time looking things up and gathering information, but I don’t have the knowledge or experience that Dr’s have. I am getting there though!!! Once I return to Vegas, I am gonna have to go on a mission to find a quality Neuro to explain all the specifics. I feel like a high draft pick in need of a Scott Boras or something! Ya know, somebody that is going to fight with me and for me! Ha

-Sabin

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 am still ready high from the past 2 events! I just can not get over the great turnout at both & how much my friends did to get everything together. This past weekend I was at Chris Cotey & Wendy Schwab’s wedding which was a great time as well. Congrats again you 2! Participating in that really wore me out once the evenings came. I was not drinking or anything until the nights were almost over. I mean, when I thought they were almost over. I am not supposed to drink, but only in moderation and ideal times. So, I only had a couple glasses of red wine. At that point, I was completely relaxed and bushed. I am like a cheap date when it comes to partying!

I have an apt with Dr. Carpenter, a neurologist, at Washington Univeristy/Barnes Jewish Hosipital in St. Louis on Monday Oct 5th. I sent Dr. C all of my records to review first which he did.I expressed to his Physicians Asst. that I am a cash patient and do not want to come in for him to say that he can do nothing. I would rather he spent that time with somebody else that needs it!

Although, I have been feeling head pain more regularly now, but it is much minor than before. It comes at all times of the day and usually is in the same spot. back of the head, BUT on the left side. The pain before and after the stroke was on the right side in the back of my head. This time it is like a pulsing pain instead of a constant pain and much less intense. It does not last long either though. minutes really. Another thing to note, my extremities get really cold easy. My hands always chilled out. It’s easy to point to the blood thinners I am taking on the fact that I have been living in the desert for 3 years. The midwest is only moderately cold too. When I snowboard though, my toes would always get extremely cold real fast in the past. My equipment is not weak either.

I am pumped for this apt. to hear what he may think are areas to look into. If he has nothing new…. I will probably let he and his team know how dissatisfied I am for taking advantage of me & my complicated case and not utilizing it for someone else in need.

-Sabin

This past Saturday was a huge success as well! I can’t express how overwhelming and great it made me feel. So many people to thank and not enough time to do it. Those 3 hours flew by! It would have been great to spend 3 hours with each person there instead of the few minutes I had!  I have to send out a special thanks to all of my friends (Chicago Committee) for their fantastic work on doing this. A lot of time & dedication is needed and it Shined through in proof. The gifts & prizes for the event were so good! I mean- Wow! Everything was stellar man. The committee should really be proud of what they accomplished! I know I am extremely proud of them. That goes for everyone that has reached out to me in many areas of the world too! These 2 events makes me feel so privileged to have such caring & supportive people in my corner backing me through this entire episode, inconvenience, journey (or whatever I am facing) while I fight to reach a certain point of normalcy. I hope that everyone had a great time there. It was like a mini reunion of Alton, SIU peeps, & several SIU Pikes. I’ll upload the pics I have soon on my facebook page & I encourage everyone else to do the same. Thx again to everyone for coming to both events, sending gifts & donations, and mostly for being a great friend!

As for me, I am getting the head pain from time to time. It is always in the same spot, but slightly moved from it’s previous position when it was so painful. It doesn’t raise any alarms nor stay for a long time usually. Like 10-20 min. A few times it has lingered longer but not excruciating. The recent visit to the ER a few weeks back I didn’t even have any head pain. I am familiar enough, now, to know if it needs medical attention.

I had all my medical docs sent Dr. Carpenter at Barnes Jewish hospital in StL. He has reviewed everything except my Mayo clinic MRI/A’s of  my head, neck, and chest. His office called me yesterday to schedule an apt. I made it clear that I did not want to see him if he did not have anything new to bring to the table since I am a cash patient. I would prefer not to waste my own time, paying time, and take time away from someone in need. They said that is not the case and he definitely want to see me! So, that is kind of exciting. The apt. is Oct 5th. Now, if he has nothing new for my $500 session, that will not be good news for him. Just saying… I will not be happy.

-Sabin

My time spent in Chicago so far has been great! Spending time with some great friends and enjoying the city life. The Committee is working hard preparing the silent auction items, door prizes, and raffle baskets. Thx again to everyone that has donated! They have gathered some awesome items man. Here is a few- Cubs, Sox, Bulls, Cardinals & Hawks tix. Regis & Kelly, Letterman tix & CBS Sunday football studio tour! Hotel stays, lettuce entertain you dinner gift certificates as well as other restaurants. Large denomination gas cards, art work (myself included), and free portrait sitting plus an 8×10 print. Autographed sports memorabilia, jerseys, Mary Kay baskets, Bed bath & Beyond (if there is enough time! ha) wine baskets, liquor baskets and more…. It is going to be so much fun! I can’t wait. Thx for everyone’s hard work, efforts, and donations!!!! You guys are truly making this a great event.

As for me, I am getting the head pain from time to time. It is always in the same spot, but slightly moved from it’s previous position when it was so painful. It doesn’t raise any alarms nor stay for a long time usually. Like 10-20 min. A few times it has lingered longer but not excruciating. The recent visit to the ER a few weeks back I didn’t even have any head pain. I am familiar enough, now, to know if it needs medical attention.

I had all my medical docs sent Dr. Carpenter at Barnes Jewish hospital in StL. He has reviewed everything except my Mayo clinic MRI/A’s of  my head, neck, and chest. His office called me yesterday to schedule an apt. I made it clear that I did not want to see him if he did not have anything new to bring to the table since I am a cash patient. I would prefer not to waste my own time, paying time, and take time away from someone in need. They said that is not the case and he definitely want to see me! So, that is kind of exciting. The apt. is Oct 5th. Now, if he has nothing new for my $500 session, that will not be good news for him. Just saying… I will not be happy.

-Sabin

_____________________

From IL. United States Senator Richard J Durbin

Dear Mr. Orr

Thank You for writing me regarding your brother, Sabin Orr. Although faced with obstacles, Sabin’s unwavering positive attitude towards life is truly inspiring.

Unfortunately, due to the large amount of requests I receive for contributions, I am unable to make a donation. I do wish you the best of luck with your endeavors and hope Sabin continues to inspire others to never give up.

Best wishes to you, your family, and your friends.

Sincerely- Dick Durbin, United States Senator

Some of the Auction Items, Raffle Baskets, & Door Prizes for “Sabe The date” in Chicago

1 Night at the W Hotel in downtown Chicago
Men’s Adidas ClimaTech Golf Shirt
2 free rounds of golf at Green Garden Country Club, Frankfort, IL
Mary Kay Gift Basket
Pampered Chef Basket
2 Bulls tickets
2 free rounds of golf at Green Garden Country Club, Frankfort, IL
(1) XL 2008 Greg Norman Ryder Cup Jacket
(1) L PGA Tour Pullover jacket
2 Blackhawk tickets
Blackhawk Jersey signed by the Hawks captain
Several prints of Sabin’s work
Oil painting of Chicago by Mitch LeMasters
“Da Coach” signed Football
Throw-back original Walter Payton Jersey
Ozzie Smith signed baseball
(4) St Louis Cardinals tickets 10/04/09 ($108)
4 Cub tickets
4 Sox Tickets
2 Sox tickets
NFL Today Show
4x Letterman tickets in NY (airfare and hotel not included)
Several Lettuce Entertain You dinner gift certificates.
2 Regis & Kelly Tix
AMC movie passes
Several Citgo Gas Cards
Wine Baskets and…… More

50/50 Raffle

Drinks, Food, and Door prize tickets with entry fee

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!

I would like to thank everyone for making the golf outing benefit such a huge success. It was quite overwhelming to see so many people there giving their support. Many great faces that I have not seen in so long. I tried to make sure that I spoke to everyone and thanked them for coming out. I apologize if I didn’t, but you should know that I a am very appreciate! The Alton area can catch bad raps all the time, but one thing is for sure- It is filled with countless genuine people that take care of it’s own! The entire event was a huge success and I hope everyone had a great time.

I can not thank everyone from the committee enough!!!!! All of you did such a great job & you should be proud of the turnout and event! Everybody had nothing but great things to say. Your friendships mean so much to me! Love ya guys.

I’ll get photos uploaded soon!

-Sabe

Much of these past days I have spent prepping for my trip back to the StL and Chicago areas for the benefits organized by my great friends. Obviously, I am very excited to see and thank everyone!!! Health wise, I have felt quite well for the most part. I had some sinus headaches which makes me extremely cautious right away! I also noticed some weird weakness & soreness in my left leg. it was just one day and I don’t know if that has any  relation to the other things or not. I try to keep aware of all signs or abnormalities cause I feel it may be something obscure that provides the answers.

Mayo clinic did call to express that I complete the work up ordered by Dr. Aguilar. The new TEE & then a Transcranial Doppler if the TEE is negative. These 2 tests are to see if a PFO is apparent in my heart. They still feel a Vertebral Artery Dissection is the likely cause and diagnosis. I am not willing to accept their diagnosis of Dissection if a PFO is not found which I believe they won’t because of all I have been through. I told them that I disagree and feel that it needs to be looked at harder and more in depth from an unlikely point of view. The new occurrences of dizziness just make it hard for me to believe that there would have been a dissection since it occurred after the MRI/A I did there that showed no evidence of there being a dissection. These symptoms are there and they are not new. The dizziness, as always, is caused directly by the position of my head!!! Why Dr.s do not put the emphasis on that factor like I desire and ask, is beyond me. It is related! 3 strokes now (2 of which are unconfirmed) all with dizziness the main complaint and I direct result of head position. How many more do I have to have before before Dr.s feel that they need to look into this seriously? Also, what type of Dr. would that be?

-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

This will be short and informative!

Yesterday, I felt a little off and severe dizziness for the first time since days after the hospital. The pain was back in my head , but not quite in the exact same spot but close. I was off and new something wasn’t right. There was a feeling in my head that I was too familiar with and new I needed to speak with somebody. My concentration, comprehension, and focus was lacking  bit as well. I called Mayo and spoke with the nurse in the Neurology dept. & she instructed me to get to an ER which I was reluctent towards of course. I went to the same hospital and got the same sit/down and we’ll get to you kinda of response… That pissed me off cause I new that would be hours and I wasn’t going to wait again this time. Plus it wasn’t severe as last time of course. So, I left and went to another hospital. I had all of docs & tests with me as well. I got in right away and talked to Dr. Anderson. After our conversation and reviewal of my numerous tests, he said that he would do nothing but give me a large bill and that I should go home and take an aspirin. So, I did and that was the end of that. All in all, it lasted about 3 hours. The symptoms that is.

This has me raising red flags and many questions. Dr. Aguilar at Mayo is ready to call this a Vertebral Artery Dissection if there is no proof of a PFO in my heart. The MRI/A I had while I was there showed no evidence though. The body repairs it on its on and it is possible that I was cured. I was ready to accept that because everything I have read in regards to a dissection really fits. TWICE this week though, I had the same symptoms again! Not new ones, but the same ones. These were both due to the position of my head again, but not the same problem position as before. 1st was to the left & I believed that I slept in that position which cause the major onslaught. 2nd, the new one, that I just became aware of is tilting the head back or looking up. These positions are obviously related and I have begun doing new and additional research. I’ll speak with the Mayo Clinic again on Tues. From all of this, I have started a new page on here called Research (there at the top) Feel free to contribute. Thx!

So I lied, not too short!

-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 …. $5,465.21                                Sept 5th, 2009

So far, this has been one of the busiest weeks I have had in a long time. I find myself just constantly going from one apt. to another, talking with billing departments, doctor offices, & instruction companies.

The MRI results from Tues.  revealed that I have a major disc bulge of 5mm between the L4 & L5 vertebrae. That has been my problem area for about 10 years now. I’ll have to been even more careful when it comes to lifting and twisting things for now on. I thought I was doing that all ready too! I need to strengthen more of my core. Having a 6 pack isn’t enough! There is a group of muscles outside of the 6 pack region that I have to strengthen cause it is mush now! I am like the Pillsberry Doughboy there man. I will continue to receive treatments depending on the levels of pain, swelling, and discomfort. Given all that, the pain has decreased significantly.

I have the Treadmill/stress test today. I am to have the cardio net Telemetry device on for 4 days as well. Still waiting to get it set up. I have had this since Sat. but you are to have an instruction phone call to learn how to properly handle all the devices & for them to activate it. I’ll have 3 electrodes and 2 electronic devices hooked up to for all of the days. Dr. Mock receives the data daily from a wifi transmitter in one of the devices. Something has happened every day from them calling late or their computers going down. Other things too, but nevertheless, it has been a bit of a hassle trying to just get this sucker started. I really needed it to be finished today since I am going to see him. That was the idea!

-Sabin

September has hit. Which means, the Alton Golf Fundraiser is less than 3 weeks away!

Now, I know that many of you are planning on playing in the tourney. Well, at least, I have heard a lot of peeps saying they are getting a team together and are planning on playing. Some have signed up, but not many. The thing is, only 36 teams can play. There was a suspicion that wouldn’t be enough, but with spots still open, it might be just right. Here’s the thing, Kelley is in charge of gathering all the teams together prior and I think it would be nice if she didn’t get bombarded  at the last minute with team/registrations (the committee is also trying to plan for prizes, food, beer, etc! Sending in your team the week of and then showing up to find out there wasn’t enough room is not a good situation for anyone.

So, I urge you to please get signed up this week if you would like to play. At the very least, email here and notify her of your team. That will help the committee in preparing for needed items through out the day. Ultimately though, you have to get in your registration form to have a team. Again, please do that as soon as possible. It will help the committee in their planning greatly! Thx.

If you are one of the unfortunate ones to not get a spot, remember that many will be there hanging out during the day, and the “after party” planned as well. It’s an all day event filled with tons of people you may have not seen for eons! So, come and hang out & enjoy the day. More importantly, your presence and support is what counts whether you tee off or not.

You can download the flyer/registration form below for the events that the committee has made. Let me or one of the contacts on the flyer, facebook page, or fundraising page know if you have any questions and we’ll lead ya in the right direction. Also, feel free to pass this along to any and all cause I don’t have very many emails/correct emails etc.

-Sabe

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 …. $5,465.21                                Sept 1st, 2009

REMINDER: Please sign up for email alerts to your left so you can be notified when updates are given.

7:15 am Pacific

From a filled weekend of catching up a with few friends, watching sports, working diligently on my new photo website, taking meds, & online gaming with kids, I’ve got a heavy stacked week to prepare for. I am scheduled with a ton of dr.s and a few lunches with friends. I was reading up on a disease called MoyaMoya that effects our Carotid Arteries. Very rare and it ultimately induces strokes by the fact the artery shrivels over time! Mayo clinic happened to actually call while I was reading too! What are the odds? Anyway, it appears that the TEE test I had performed at St Rose hospital in Las Vegas is what they call “Limited”… That was awesome news to get! So, Dr. Aguilar again wants me to have the repeated TEE to check for a hole in my heart, PFO, that St. Rose tested for back in June by having me indure an incomplete or limited test of shoving a tube down my throat!!! Of course, I am angry, but i assure you it is limited:) ha. Mayo said if the new TEE is negative, then Dr. A wants met to have a Transcranial Doppler. (What if a PFO is shown in a new TEE test? Do I have a case? Look at everything I have endured for 2 months)

The good thing is that I have a scheduled meeting with the Cardiologist this week, Thurs. I am doing a treadmill test though and I am not sure if I’ll be able to speak with Dr. Mock. This new mayo info may postpone or change the test Dr. Mock was scheduling for me to check for a PFO. Hopefully I can get in though. He leaves town on the 10th and I’m out on the 15th… Not enough Days.

I am having an MRI on my back  Tues. morning to find some more information about my chronic reoccuring back injury. It’s doing much better now though. It’s still sore though, but not crippling.

-Sabin

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7:15 am Pacific

First off, I want to thank all of you that responded to my 2 month anniversary post. It was nice to hear expressions of inspiration, relatedness, concern and positive messages from many of you!!! I wasn’t saying that I am always down, I just wanted to give you an insight of what this entirely entails. I am staying positive and in good spirits for the most part. I still feel that I will have a 100% recovery and that many people will benefit from my experience and your support.

Yesterday I had a visit with the chiro for my back and a new cardiologist for my heart, heart rate, and other symptoms. The back is improving, but not as fast as I first anticipated. I suppose all the injections while in the ER left me with some wishful thinking. The inflammation is low and so is the pain. Really, this is what I deal with… It’s hard for me to stand straight. My back doesn’t want to let me walk normal. I look like the hunchback dude! Hopefully next week, this won’t be the case.

Dr. Mock’s, the cardiologist, meeting went well i think. I like the way he goes about his practice and seems to want to exercise the best way of methods into finding the problems and resolving the issues. He was quite amazed of what happened and more so of all that I have been through! He too, thought I was in the medical field because of all the terms, procedures, and conditions I am knowledgable of now. Pretty funny! No, I am just like a sponge when comes to knowing about anything that may affect me. I explained to him that my heart is near 100 when I’m just chillin. In the neighborhood of 130 when I climb stairs & and It hit 185-190 the last time I ran on a treadmill which was about 3 years ago… All of these scenarios assured him that something is wrong! So, I have treadmill test next Thurs, Sept 3rd, if back doesn’t act up. He didn’t rule out the PFO but looked into other types of tests I can do besides repeating the TEE. I gave him a copy of the test from Dr Dawood I had at the St Rose hospital which he will look at, but he thought, like I, that a difference test should be performed to look for the PFO. (A patent foramen ovale (PFO) is a defect in the septum (wall) between the two upper (atrial) chambers of the heart. Specifically, the defect is an incomplete closure of the atrial septum that results in the creation of a flap or a valve-like opening in the atrial septal wall)  Learn more about a PFO at http://tinyurl.com/4py75l. I found a study called a PFO Nuclear Medicine Study which I am being scheduled for. I believe it’s like/or is an Angiography. They’ll inject a bunch of dye and study it through an X-ray or some type of ehnaced imaging to determine if the dye is moving from 1 atrium to the other.

(thx for reading sis. if you are. Ya know, it’s been almost 18 years since I’ve heard from ya… but I’ll help ya in anyway if you are suffering)

-Sabin

“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 <—– 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!

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–

We are currently at …. $4,983.82                                August 27th, 2009

2 Month Anniversary and Self Reflection upon the Stroke

REMINDER: Please sign up for email alerts to your left so you can be notified when updates are given.

7:00 am Pacific

One more day before I meet with another Dr! I have a cardiologist date tomorrow to explain my unexplainable condition:) Well… maybe conditions. Ha. I think I may be the undesirable patient now… I have become so educate in so many areas that I control the conversation for about the first 30 mins trying to make them understand everything I have went through. While listing the many tests that I have all ready cleared, MRI, Ultrasound, TEE, EKG, low blood pressure, hi heart rate…. I can just see their mind turning to a state of I don’t know because I just listed all the tests they would recommend for others patients is not an option. Hell at Mayo, all they wanted to do was the same dam thing I had done before!!! It all gets me discouraged over and over… Will I ever get an answer that I can be satisfied with? I don’t wanna quit! I want to know! I need to know! If I decide to break a rule, I would like to know the risk I am taking. You all know that if you speed, you may have to pay a fine- Right? You can’t say, Oh, I didn’t know I couldn’t do that. My car says it goes 140m.p.h. so I thought why not. NO, you know! You know you are breaking the law. Everybody knows when they are taking risks and breaking rules. Well, I would like to know that if that jumbo chicken finger is a risk for me to have slurred speech or the opposite. Maybe my daily routine of working out is too much strain on my heart and I shouldn’t be pushing myself to hit the elliptical machine for 35 min. or lift weights for 60 min. even though I think I am helping. That’s the thing. I just don’t know if what I am doing or will be doing is good for me! And that… is unsettling and hard to come to grips with.

This has unfortunetly became my way of life though. As the initial news and awareness has calmed down- Ya know, the constant facebook updates, tweats, & emails which led to cherishable contacts from so many caring and concerned people. Many helpful donations, the rise of 2 fundraising committees that have worked intelligently & tirelessly all for the sole purpose of helping me. I don’t know what I have done over the years to impact so many people to reach out and express genuine sympathy and aid towards me. As a friend recently said to me, you must have been living your life right! As non complicated as it is, that carries so much weight! As I was saying before- this has unfortunetly become a way of life for me now. I no longer have any thoughts that made me equal to many of you like what to wear, planned events, drinks with friends, and so on. No, my everyday life is filled with heart rate monitors beeping, stacks of letters from a non paying insurance company, phone calls to federal agencies, letters to congressmen, letters to media outlets, reports of tests, losing my balance, dizzy spells, finding new doctors, resting (which I don’t do much of), researching the internet, spreading awareness through twitter, this Blog, & facebook. Wheh! Some days, I look at the bills & collection notices and it just gets a hold of me so hard… I can’t get out of the funk. I start to think, am I going to lose everything I have earned, the right way, for the past 10 years in say a few months??? I mean, I can’t see the end. I don’t know what to expect. It’s a heavy load to have on your shoulders. I can’t work. I have no income. I have no roommates. (need a place? let me know:)I don’t do the daily trip to the mailbox anymore cause I don’t want to find another bill for a procedure that gave no answers. I know I am not getting any paychecks for snapping any pics. So, it’s all bad news except for a couple of you that sent me some sweet ole gifts. Thx! It’s easy to feel alone when you contemplate the strief and grief I have to incur on a daily basis. I become lost….. But somehow, maybe the next day, I end up feeling positive that I will overcome all of these issues in time. That is where so many of you play a big role. I am constantly thanking you all for your support ya know. But it is you that fuels me through my thoughts of endlessness. When I am down, I get an email, or text message, a phone call, or a quick facebook wall post. Sometimes when I am down, I need to reach out to you as well. I just want some normalcy. I just want to talk and laugh ya know. I just want to escape from my loaded problems…. I wanna her how you are! Speaking medical jargon all the time is not glorious humor:) So, thx again and again!!! Your continuation of letting me hear you in your own way stretches far.

I want my life back! … I mean, I want a better life back. I want to have the opportunity to experience and enjoy new adventures again with my new outlook on life and people. I don’t have any kids, but you know how every parent says that your life changes instantly the moment you become a mom or dad? That is probably the closest thing I can relate this too cause I feel like I got a second chance. A second chance to carry on, but there is no way I will look at life in the same light. I have changed in many ways, but I find myself being the same in many too. I am not going to go into examples and evaluation of my mental state… Geez, my brain is still redeveloping. I don’t need outside pyscho analysis! Ha Just kidding. Simply, all I know is that I am proud to be still here. I have many new and difficult daily obsticales that the average 30 something knows nothing about. Some visible, but mostly invisible to the clear eye. I know that I am not myself compared to who I was before, and maybe I will never be. I am here though, and that’s pretty cool in itself.

-Sabe


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8:00 am Pacific

As soon as I mention my back getting better, it decides to kick me in teeth and knock me down! Extremely sore yesterday and pretty much crippled me from moving at all until I did some stretching through the pain. That seemed to relieve some of the pressure and I can move around again. I keep icing it as well to keep an swelling from taking place.

I have been wearing a new much better heart rate monitor that was a gift from Jeff Judd. My heart rate still stays near 100 when chillin on the couch, chair, or computer. It jumps to 120-130 when I am walking, climbing stairs or carry something. Semi-normal day to day stuff. I don’t do much besides sit, but I notice that it doesn’t take much for it to jump. So, Wed. I meet with Dr. Mock, a cardiologist to explain the treatment I have had up to this point. I sent a copy of my TEE test to the MAYO Clinic at their request. I also have a copy for myself and Dr. Mock.  Since the 14,000+ MRI’s didn’t show anything, Dr. Aguilar wants to be sure I do not have a PFO= hole in my heart between the left & right atrium. She may request that I come back down and do the TEE there if it doesn’t meet MAYO’s standards. Mayo Dr.s don’t believe that I need to seek clinical treatment from an Endocrinologists, but I am not ruling that out!

So much is going on, but I still have no answers while there is definitely something wrong still!!!!!! I am not the same person I was before. I struggle with many things that are invisible like balance, memory, vision, and more. They are minor, but they aren’t normal. On top of that, the financial aspects grasp me some days and it’s very difficult to snap out of the funk! So, I just want to thank all of whom have donated to this point!!! I am not used to excepting anything from other people besides my family! Your support truly means a lot and is allowing me to fight as hard as I can!

-Sabe


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9:00 am Pacific

This has got to be the most days I have missed in a row. The drugs, immobility, pain, conflicts, and announcements has kept me held up. I absolutely hate taking those drugs!!! Happily, my back hiccup is no more. It tweaks a tad, but I can move around and get things done now.

-Sabin

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11:00 am Pacific

The back is better, but I am still pretty immobile. I should be able to make it today to the chiro and get adjusted. I have made an apt/ with a local Cardiologist for next wed. as well. Small steps…..

ANNOUNCEMENT!!!!!!

I am proud to announce that the Chicago Fundraising Committee has finalized the details for their September 26th event to be held at KinCades!!! Thank you guys for all efforts on my behalf. It means so much that you are working hard in aiding me to recovery! An “Evite” will be established as well for the possible head count. Please feel free to invite anyone that is not on the list when that goes out.

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

————Download me—> Sabe the Date <—– 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!

REMINDER: Please sign up for email alerts to your left so you can be notified when updates are given.

10:50 am Pacific Time

I have come down a bit from the meds besides what I have here at home. I can now get up with pain and slightly walk. I can only take about 12 inch steps before I feel extreme pain. I pretty much have to lay down and continue to ice for a comfortable relaxing position. My heart rate has been staying pretty high too. It is constantly around 100 even though I feel relaxed here. If I get up to grab a drink or whatever, it hits 125 or so. I imagine it is from the meds I am on. I don’t really feel stressed either.

I will probably try to make it to the chiro today as well. In addition, an MRI may be needed to see what is so out of whack.

Special Thx to Smitty for coming right over and helping me get to the Dr.s! Thx a mil bud. Thx to John & Robin for checkin on quickly as well.

12:50 pm Pacific Time

The call from MAYO CLINIC came with the results and advisement. I have updated the page for you all to read!

Click Mayo Clinic up top or cut/paste the link below for the info

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

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!

–Download Me–>Golf_Tournament_Reg_Form<–Download Me–

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

We are currently at …. $4,863.05                                August 18th, 2009

9:00 pm Pacific Time

The hits just keep on coming!!! I once again threw my back out at the Gym! I was of course taking it easy, but it doesn’t take much. I can’t believe this is what is upon me. I am constantly  dealing with aspects of pain & suffering, Agree!?! I am pretty sedated from all the dope they pushed in me. Typing is pretty tough I can’t focus and keep

No call from the Mayo Clinic today as well. I have updated as well though. Follow the link  below.

Click Mayo Clinic up top or cut/paste the link below for the info

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


4:00 pm Pacific Time

I went through with the MRI/A testing and wrote a posting about the experience, what happened, and where I stand now.

Click Mayo Clinic up top or cut/paste the link below for the info.

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

11:00 am Pacific Time

OK, the wait is over and things are moving in action today! I finally got a call and there are some procedures scheduled.

Click Mayo Clinic up top or cut/paste the link below for the info.

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

Nothing has been scheduled today!!!! I have updated the Mayo Clinic page for yesterday and the current plan as of now

11:00 am Pacific Time

I gotta say I am getting quite frustrated today… Nothing is happening for multiple reasons. I found that the MRI is pending because the insurance which won’t pay for it anyway has to clear my Dr, Dr. Aguilar as being creditable. I asked them how we can speed that up which means the Dr. has to call in and state it as stat. Otherwise, it would take the rest of the day and then I would have to wait for it to scheduled at Mayo. That would most certainly move me into next week here. I asked the clinic what the cost is…. just for the MRI it is 14,000! That does not include all the other costs they will have to do the procedure. I.E. an IV.

The apt. with the Cardiologist was canceled because I did not do the TEE yesterday which I have all ready had! So, the Dr. won’t see me. This is Crazy! I am trying to get answers and the workers at Mayo do work diligently, but I am here with my hands in the air now. The MRI has to be done! I’ll then need to meet with Dr. Aguilar to discuss results and my future prognosis. It seems that any heart condition or endocrinology problems I may have may have to wait…

I just don’t know right now and I am forced to continue to wait!

6:30 pm Pacific  Time

I spoke with Dr. Aguilar’s RN several times today! Aetna has not ok’ed  the MRI yet and said they would have it by the end of the day. I can not do anything at this point & may have to leave with out…. maybe come back? I dunno.

Click Mayo up top or follow the link below.

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

REMINDER: Please sign up for email alerts to your left so you can be notified when updates are given.

Nothing has been scheduled today!!!! I have updated the Mayo Clinic page for yesterday and the current plan as of now

Click Mayo up top or follow the link below.

8:30 am Pacific Time

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

I am currently waiting to have in the Cardiology dept. A Dr. is reviewing my records and they will get back to me whether the test is needed or not. No TEE test was performed and I am awaiting many things at this point. They are in red on the Mayo Clinic page.

Click Mayo up top or follow the link below.

9:30 am Pacific Time

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

I am currently waiting to have in the Cardiology dept. A Dr. is reviewing my records and they will get back to me whether the test is needed or not.

I added new updates last night on the Mayo Clinic page. I went into the theories Dr. Aguilar has expressed that I did not explain earlier.

Click Mayo up top or follow the link below.

7:50am Pacific Time

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

I have added new updates on the Mayo Clinic page. I went into the theories Dr. Aguilar has expressed that I did not explain earlier.

Click Mayo up top or follow the link below.

6:15pm Pacific Time

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

Check the Mayo page for the latest.

Click Mayo up top or follow the link below.

1:15pm Pacific Time

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

Today is a prep day for my trip to the Mayo Clinic. I hope to get some real answers and find a treatment for what I may be affected with. Hopefully something concrete that is treatable and not life threatening. Yesterday was the 1st real play day I have where alcohol was among many peeps. I was actually really ok with it and did not feel any urge to wanna par take. That was cool to know. I mean, when you are used to attending many events regularly, it has never been a question that I would drink. My mind is clearly focused on the importance of what is at stake. It was good to see the people that I did see at both events! Also, I want give a special thx to Paul for offering to give me a ride and keeping me company at Mayo as well as Liz for helping with hotel accommodations.

I will update the Mayo Page daily and as frequently as possible with all I am undergoing. Thank You for your continued support!

Returning to Dr. Nahkle, I performed an Ansar test. It’s 15 mins. of various breathing techniques while sitting and standing. It showed that my heart rate is high but not to the point where they felt danger. Blood Pressure on ave. was 100/60 while sitting. Your Blood Pressure is supposed to lower when you stand and helps the flow regulate to the head from the legs. Well, mine increases. It was an ave. of 128/88. That can explain my lightheadedness, dizziness, high heart rate, spot fatigue, and more. It still does not explain the Stroke or headpain…. not yet at least.  My body is releasing too much Adrenaline or Epinephrine. We typically release it for Fight or Flight scenarios and it also relates to too much Anxiety. The DR. also referred to it as Neuropathy. Learn More here- http://tinyurl.com/l5mnly.  This is a condition that also makes me a risk to  ORTHOSTATIC HYPOTENSION. The levels and degree as to how the body is affected can vary greatly.

Learn More here http://tinyurl.com/no887n.  The Dr. instructed me to take it with me to Mayo next week as they conduct their tests.

–THAT is the 1st test I have done that shows something needs to corrected–

I was just told to expect to be at the Mayo Clinic through Thurs. & maybe Friday. I’ll update you all if I have time with posts and my progress as it comes through. I have created a page called Mayo Clinic at the top.

Until then, I have some more interesting news to share.

I met with Dr Nahkle, the endocrinologists, today. He believes that I have symptoms to an Autonomic Dysfunction. There are a few types and it can get complicated Learn more about Autonomic Dysfunction on this site- http://tinyurl.com/4am78c. Basically, everything I have been describing- The head pain, fatigue, high heart rate, lightheadedness, pain in the back of the neck, lack of concentration- they all fall in this category. He is going to run a test tomorrow morning at his office and determine this from there. I won’t explain any prognosis at this time because the severity can vary based on the condition.

-Sabin

I am excited for my apt. with the Endocrinologist today! I realize that Dr Nahkle may not be able to do anything, but it should be able to offer me some explanations or at least lead me in the right direction. I have not seen a Dr. regarding all of these issues since July 21st I believe. That is too long for me. The heart rate is still staying quite high IMO. I have noticed it has reached the 60’s lately, but I feel sooooo lethargic when it is there. Most of you probably feel great as you should. I feel normal when it is around the 90’s which is too high. Overall, I have been feeling much better lately! I am still not taking any meds except when the pain requires me too. It is quite seldom though… Very much good news!

Would like to express to everyone how much I appreciate each note of support I receive, donations collected, and overall concern! Your continued support pushes me, lifts me, & drives me to stay positive and believe good will prevail. You all are helping me in your own way! Thank You & feel free to contact me anytime!

-Sabin

Energy level has been really low lately… Not sure what to attribute that to since I rest a ton and eat like a champ. I mean, I eat fruit and veggies everyday and usually have chicken or seafood for my main protein. I only drink water/vitamin water & sometimes decaf coffee. Hopefully the Endo Dr. will have some thoughts to explain this.

I went and obtained copies of the blood tests I have had done at Qwest Diagnostics. I am not a Dr. but from what I can tell,  all things tested OK! High/low in a few categories, but nothing alarming. I can only assume since the Dr. Nguyen didn’t call right away. Good news really. It’s just more things to cross off the list. I did test positive for 2/3 tests under Glycoprotein which indicates I am a risk factor for Thrombis- blood clots. It seems that a Factor II Mutation was performed as well witch showed No Mutation. That result leads to a much less risk of having Thrombophilia- Blood clots but it does not rule out other mutations in the Prothrombin/Factor II gene or other causes of Thrombophilia. Also Neg for Factor V Leiden DNA Mutation. Other tests were done that I have not listed as well.

Simply put, it seems that the risk of my blood producing its own clots is quite slim! Good news.

-Sabin

As new week is starting, the pain is much more tolerable as opposed to previous weeks. I am excited for my Endocrinologist exam on Aug 6th. I realize that not much will take place at the apt, but Dr. Nahkle may have some insight he can relay verbally. My high heart rate, low BP, energy level fluctuation and an obvious blood flow issues should spark some explanations that can be tested and treated.

-Sabin

The pain came back and I immediately took a percocet! I’ve been with minimal pain that is tolerable and as soon as it got bad I didn’t waste any time in poppin a pill. I usually deal with it, but didn’t want it around. I feel like mush now from it, but the pain is gone and I can just chill.

The Chicago Crew is working diligently in specifics and will be releasing info on an event very soon! A meeting was held on July 30th for those who could make it. A facebook page, The Sabin Orr Chicago Fundraiser, was created for discussing details and gathering information upon the event. Donations and gifts will be needed heavily as well!

Sabin

I am happy and privledged to announce that over $4000 has been donated to this point! The amount of generosity and care giving that has exploded from everyone is quite amazing!!! I am so thankful and blessed to have such caring friends!

The Alton Crew has spent many hours in organizing a loaded day for everyone on Sept. 19th at Cloverleaf golf course. Please download the info below if you have not all ready for all the information. Donations, sponsors, and gifts are still in demand.

The Chicago Crew is working diligently in specifics and will be releasing info on an event very soon! A meeting was held on July 30th for those who could make it. A facebook page, The Sabin Orr Chicago Fundraiser, was created for discussing details and gathering information upon the event. Donations and gifts will be needed heavily as well!

As for me, the pain has reduced to a minimum and I am speaking much better these days!!! I do notice things through out the day like being light headed and some balance issues. Much more evident when I am tired. That is for sure!

-Sabin

Many hours spent sleeping and resting today. I’ve been really tired again. Although, I did wake up early to go and apply for pre med card from Social Services of Clark County. After 7 hours of waiting before I could see a social worker for 45 mins, I was denied. I had to try though!!! She also informed me that I will probably be denied by Medicaid, SSI, & maybe disability. We’ll see.

Quick note, the social services office, guidelines, regulations, & stipulations across the board need to be drastically updated! People desperately need help and you have to pretty much be at the edge of homeless before they will help. Even if assistance is granted, it seems that the odds for the person in question will still keep them barely being on the streets. IMO from observing.

Dizziness still occurs in me, but for short stints. I noticed it at the dentist where I laid down and stared at a light or kept my eyes closed. I noticed it last night after watching a movie. Both times the dizziness did not last long though. Somewhat tired both times as well.

-Sabin

P.S. Happy b- day Pop and thx for everything!

Big News Today: I got a call from the Mayo clinic in Scottsdale, AZ. They have made an apt. for me on Aug. 11th with a Neurologist. Now, that is just a consultation, but I am at least a patient  now!!! Making headway! I am waiting some more feedback as well that a friend has supplied me with. Thx you all!

My Apt. with Dr. Santos has been rescheduled to Aug. 13th if needed.

-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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