Do we live meaningful lives as people with rare conditions??

Hey everybody,
It's been so long since I have sat down and blogged, but alot has gone on in my life since my last entry which was sometime last year lol. I am not going to fill you in on the exact events which transpired during this period, but I will present an idea which is well worth inquiry to the moebius community. My  hypothetical question I ask to anybody who either has moebius or has a close relation to another who has the condition is, "Do you think  you/ they have a meaningful life"? Before you answer the question I want to clarify what I describe as "meaningful". Meaningful in my opinion is when something is associated with a positive memory and there for expresses worth in your life. Meaningful in the context of life specifically involves value. Life is meaningful if one can look at their life from an objective standpoint and say why they are glad to be in existence. This reason for existence can either be your occupation or your family or even your associated hobbies, but there has to be a reason which you truly believe.

Those of you who are reading this blog may be wondering why I am posing such a deep philosophical question, but I feel it has relevance in how we view ourselves in the present moment. It also has relevance to Moebius Syndrome. How does it? Well, I speak for myself only when I say sometimes I look at the world around me and what I see distraught me as clearly the other individuals in this world who are "normal" don't have the problems I do. I feel my life is harder than someones who doesn't have my condition granted they have no major problems which would hinder their quality of life. Because I can sometimes get upset I feel my life isn't as meaningful as any average persons life.
As I stated earlier having a meaningful life, in theory means looking back on your life and seeing value and reason. My life overall has had value as I have impacted others in a positive way through my attitude. I have also gained knowledge through  my passion for scientific research which I eventually stumbled upon  the concept of regenerative eye movement that  I shared in the Many Faces Community for all to acknowledge.  Despite these positive memories there are times when  the dark side of life comes to light and distorts the manner in which I envision my life. Because I  look different I have never been in a serious relationship. This is one of the major elements which urge me to believe my life has less value. How can you be happy with life when your alone? I guess you can't. Actually, empirical science defends my accusation as various studies which I have included the links to below have purposed the importance of having a significant other as it's related to mental health and quality of life.

So I ask anyone who has read this blog,"How meaningful is your life"?  Feel free to comment!!!!

One step forward another step back

In the past few years I have faced numerou obstacles and challenges which have made me realise I will always perservere in the face of adversity. I have had to combat medical problems in addition to furthering my education which is not easy in light of the medical problems. Ultimatly these problems made me stronger as a person.
I am 19 years old going on 20 and I just moved to San Fransisco. This was a challenging feat for me as I have always been a home body. I was walking along the pier today and I began reflecting on the pivotal events which have surfaced this past year. I was beginning to resent the world for the unjustness of it all when I experienced a major break through. I realised that having MS has given me this indelible resillience which allows me to find my way through the darkness. I realised life has it's upps and downs which we have all endured through, but we just have to keep going. Simply by just putting one foot in front of the other. Even if it's a step forward and two steps back. At east your one step ahead.

Robin Cook's novel "Foreighn Body"

This summer I have been engaging my brain by reading books which have mostly been Fiction and Medical-fiction. The novel I'm reading at this moment is called Foreign Body by Robin Cook. I was drawn to this book for two major reasons. The first was my aptitude toward medical literature as medicine is one of my passions in life. The second reason revolves around my love for Robin Cook. For any of you who don't know Robin Cook he is an amazing individual. He is an eye doctor who has his own practice in Florida. He has composed over 30 novels which never fail to enthrall his audience (almost all of his novels were best sellers according to New York Times). He is such a fantastic writer he is actually accredited to patenting the "medical thriller" by his innovative method of combining elements of medicine with fiction and binding the two common themes into one novel. I have been noticing a gradual theme which is embedded in the heart of his books: the clash between politics and healthcare and the desperate measures exercise in order to receive medical care. Unlike many writers Cook offers both perspectives from the patients and the opposing political officials. This theme is more appear-ant than never in Foreign Body. The novel in short is about a UCLA med student who actually learns about her beloved grandmothers death from a segment about medical tourism on CNN. Her grandmother Maria Hernandez flew to Africa in order to receive a hip transplant due to financial instability. She died because she was intentionally injected with a bolus of succycholine which causes fatal heart attacks. The nurse who committed the crime was just one of a group of eleven nurses working for a small agency called Nurses International. The nurses are to put to death isolated patients who have had a heart defect in their patient history and had anesthesia used in their operation.  Basically the novel assesses both medical tourism and leaves the reader questioning ones safety when in the hospital or any medical facility for this matter.
I did just this when I started reading the novel. I had not known "medical tourism" was a growing industry. I am well aware of the idea of medical tourism as I am a medical tourist myself. I had a Gracillis muscle transplant at the Hospital for Sick Children in Toronto. This was a very long voyage as I reside in CA. The plot of this novel actually made my stomach turn due to it's relativity to my experience. The patients traveled to a foreign country to undergo elective operations. Prior to reading this novel I thought I was one one of the very few individuals who would decide to have surgery in a foreign country. The motive behind my aspirations lied behind my desire for a good surgeon which would facilitate a great smile as it was " man made". The motive for the patients in this book for traveling to Delhi, India was associated with finances. I honestly don't believe this is a legit reason to travel to a foreign country. When I googled "medical tourism" to see exactly why patients would bother to travel to a foreign country to undergo an operation which could otherwise be performed in the U.S I found web sites which attempt to lure the patient in by advertising the trip to have an operation as some kind of paradise. Having surgery regardless of it's severity is  a risky ordeal. There is always the risk of post operative infection or thrombus(blood clot). The advertisers suggested when one is recovering they can explore tourist attractions.This suggestion is something short of ridiculous. No one wants to embark on a water rafting voyage after surgery as this was the picture posted on the web site. Personally, when I was in Canada I tried to not strain my body as these actions disturb blood vessels which of course would be impaired as they were uninterrupted sutures used to ferment the implanted muscle and furnish  blood flow. I did go to the mall, but my movement was slow as I did not want to engage in an action which would cause me problems down the road as I was a 5 hour plane ride away from California. This leads me to my next point: you are far away from your surgeons care. You could e-mail, but than the problem of time zones and operating schedules arises. Personally, I would not choose this plan of action if I had the chance to travel to a foreign country for an operation. The pre-op time period leading up to the surgery is somewhat excruciating in terms of the paranoia. Their is this butterfly feeling in your gut  along with a slight touch of nausea which does not diminish no matter what activity your engaged in. You want time to go faster because you want the operation underway to release yourself from this mental torture.
As I turned the pages I began reflecting upon my experience at the HSC. My mom was with me which made decreased the chances of receiving inadequate medical care. She was also a RT who worked night shift and she was well aware the majority of medical deaths and mistakes are made on the graveyard shift. A recent study revealed 98000 deaths which were otherwise preventable due to medical errors. The patients were by themselves when they were murdered. They were prone on hospital beds with IV's in their arms.Needless to say they were sitting ducks. I have been a sitting duck many times in my life as I have undergone various spinal surgeries and the two smile surgeries. Robin's novel inspired me to google "hospital serial killers" and to my surprise articles elaborating on patients being mistreated by purposely tampered medications. To my horror their was an article written on July 16th documenting 11 patients who wer supposedly were the victims of mal- practice as various measures such as altered medications were taken to harm them. With this vulgar idea in mind we need to be proactive in our health. Even though it conflicts with our instinct to believe doctors we must always be on the defense for mal-practice.
I believe everybody should read Robin Cook's books because you can always learn something new especially in regards to medicine. Also, particularly for the MS community we need to recognize the importance of seeking alternative perspectives of treatment. Some doctors are somewhat knife happy. This is a taboo subject as we don't like to recognize our care providers as potentially harmful individuals. Many with us have had to find our way through the medical maze more some than others. None the less all of us at one point or another have found yourself in a hospital or rethinking a doctors potential plan for care. Personally, as an infant my mom had to defend her case protecting me from receiving a tracheotomy. Her medical expertise in the field of respiratory medicine allowed her to make n educated opinion. Also, her role as a parent gave her the intuition she needed to remain true to her decision. She made her case against teams of doctors who just could not understand the reason as to why a mother would not trache her 6 week preemie with tracheomalacia. The doctors based their treatment plan based on what would be "the easiest plan of action". They felt everything would be better if my life was just  little bit easier with the trache.In hindsight, my mother was aware of the complications which arise when a patient is trached. Their is increased risk of infection given a stoma is an open orifice. Their is also special attentive care for the trach itself. Changing is needed and suction should be frequent to prevent blockage. To top off this barrage of negativity the aspect of appearance come into play. When your child or you are in danger of needing medical attention I would not advise seeking your opinion in regards to appearance. In my case, I had an informed guardian who knew what she was doing. This was just the icing on the five story layered icing cake! If you are certain of your decision just question yourslf, "Do I want my child or myself to have a gaping hole in my throat?". In my opinoin this situation would lead to decreased self confidence as time goes on. Just because it would be the easiest option for treatment doesn't mean its the right thing to do. Because I did  not undergo the operation I continued to stay at UCSF where I was given Oxygen and respirator treatments by my mom in addition to the nurses.  In the final analysis my moms insistence was awarded and she was indeed correct! She was also adamant about me not getting a blood infusion from the blood bank at UCSF; way back when in 1992 San Francisco was a gay haven! Not that I disagree with gay marriage or relationships we all know from statistical figures that gays do have AIDS. This was why my mother was insistent on me not receiving a blood infusion. Eventually my lung problems diminished as I became older. To end this blog post I will offer a call to action: Never let anyone be it a doctor or a teacher make an affirmation on your abilities as they are just individuals peering in from the outside. They may offer a degree claiming they are knowledgeable, but only we are truly capable of acknowledging our true potential. Lastly, I want to emphasis what a great writer Robin Cook is. You will find yourself engaged in the book within the first few chapters. His books are fast pace and the action begins at the beginning of the book. There i no droning introduction which actually makes you stop reading the book before it actually becomes interesting. He strings together characters like a pro and throughout the course of his thirty plus novels he masterfully has allowed them to develop and flourish in their relationships. This dynamic character development allows the audience to really get to know the characters as the audience has a personal connection with the characters he creates. With this being said you should definitely take a long lok at the next RC book you see. If your lucky enough you could just get a hard cover copy of his new book Nano which is being released on January 8th 2013.

Scientific research and the pervasive effect on the economy

Scientific research as we all know is funded by the national government. Other than this meager factual stat we don't concern ourselves with the financial aspects and implementations of scientific research. However, if asked the question, "Does research effect the economic development (not considering geographical location) one would probably answer yes to the question. This stand point is valid as such action requires experienced individuals to perform the gainful activity which adds to the existing labor force. With this expansion also comes advances in technology which in turn stimulate economic growth by allowing revenue to come in.  Wait-if this is true then why are't scientist making like rabbits and hopping to it? Well, the situation isin't as clear as it seems. Despite the widely acclaimed belief research assists in promoting an imperialistic economy social science is know beckoning a new hypothesis of the impact research has on a nations economy. According to a report from Stanford performed in 2005 sociologists are claiming, "Indicators in national scientific activity show that this negative effect is partially explained by the expansion of scientific activity into more relevant domains (e.g. medicine and environmental sciences)". In other words the economic stimulation governed by the empirical activity is combated by the impact it has on medicine. This makes sense as for instance in medicine the cost of national care generated by hospitals amounts to 4.7 billion in the year 2012 alone.

 How can we make both sides win? The answer is, we can not. I feel in my opinion science and politics are separate entities and we should find a way to rig the system in such a manner that the annals of science should not be intermixed with other federally run programs. Why should scientists be seeking work when they could stimulate their mind and make a profound effect on the world just because the feds are fat cats. Science and politics just don't mix. Period.

Clinical research: Do we have to have doctorate degrees to conduct scientfic research?

When I explain my ambition to help solve the mystery behind the etiology of Moebius to various individuals some take me seriously and wish me luck with my endeavors. Others, on the other hand are very pessimistic and retort with a snotty comment such as, "Why do you bother your not a doctor". "Your not going to do anything. Your wasting your time". These comments though dissatisfying deliver me the animosity which urges the drive inside me to help solve the puzzle of MS. To this date I have conducted my own research on topics which are unique and pretty much incomprehensible to the general population as my mother who has a knack when it comes to medical sciences claims this research I envelop myself in is, "way over her head". I love to know things; hence why I am passionate about possibly putting the pieces all together. When I say,"putting the pieces all together". I am talking about knowing the answer to every possible question concerning Moebius syndrome. Why can one syndrome have so many variances in the afflicted individuals? Why are some affected one one side and others on both? Why are some of us born with closed lips and others such as myself are born with an "open mouth" without closed lips?  WHY? WHY? WHY? Like I said earlier I love to know the answers to questions. Not knowing leaves me in the dark so consequently I search for a candle to light my way through the array of blackness. 
My research efforts thus far have payed off. I have learned an equal amount if not more from the numerous hours of researching than I have in my actual science classes in college. Since I am an aspiring Biology there is significant cross over between various classes required for my discipline and the subjects I am googling over the web. My research has allowed me to participate in class discussions and put in my two cents worth when it comes to topics such as regenerative medicine and the etiology of vascular disease. 
I have come to learn a lot concerning the neuropathology and clinical findings in studies with MS patients.
I have learned Moebius Syndrome has it's implications not only in the facial nerves, but deeper inside whats refereed to as the "cranial nerve nuclei". These nerve nuclei are comparable to a mailman in the sense they relay information such as sensory information to the synapses similarly to the way the mailman relays the mail from the post office to your house. How does this impact the situation? Well, because nerve nuclei are impacted we now know or have a clearer understanding of the malformation which occurs during the gestational period. This implication also explains the broad spectrum we see with this syndrome as not all individuals nerve nuclei with MS are impaired. This statement is derived from findings of the largest MRI study consisting of 37 patients. The MRI specifically found defects in the brain stem which is of course where the nerve nuclei are housed. 
You can view this study at: 
 http://www.ajnr.org/content/26/2/430.full#sec-2

Is it science or sin?

As technology advances far beyond the horizon we see it setting on before our eyes we are being faced with the ever growing conscious decisions which for some directly conflict with our morals and ethical beliefs. I have my mindset focused on one particular action which before the advance of technology was not an option. This pressing issue which has become the center of debate both among social groups to in the press rooms is abortion. In my eyes it is wrong, I have developed this viewpoint from the scientific perspective as I always incorporate scientific knowledge into the basis of my decision whenever I decide to make one. I find it blatant now that science or better yet medicine is a discipline which focuses on rectifying issues not the ethical implementations pardoning these feats achieved. Another medical breakthrough readily available in the 21st century is the 4d ultrasound. This allows stunning perception of a fetus in real time. Another obstetrician provided service is various genetic screening tests. From these tests doctors detect abnormalities present in the fetus such as congenital abnormalities present on an ultrasound. With this new ability comes an intriguing question-What should I do if my baby who is unborn will have a problem for the rest of it's life? This question posed by parents with good intentions is sometimes answered with abortion. I often find myself thinking, if there was ever a screen for Moebius prenatally would I ever abort the child? I would never abort the child-no way no how! However, If there was a procedure to fix the Moebius Syndrome I truly do not know what action to pursue. This question intrigues me as I would not desire to see the child afflicted with the disorder but it would not be a negative effect either if it was present. Issues such as these have come to my attention recently especially the scenario surrounding the rectification of a fetus afflicted with Moebius which is why I thought I would share my thoughts in this blog
As my thoughts surrounding this delicate topic come to a close I am left with one ultimate conclusion. Whenever there is a positive it is always combated by a negative effect. This negative effect usually is the clash challenging ones ethical beliefs. Another standpoint of this argument which hasn't been discussed yet is the religious views regarding treatment of a fetus or human being for that matter. All religious people differ in their definitive opinions as they are all unique individuals however, the vast majority of folks unite on major issues such as abortion. Many individuals with religious beliefs state, "Well... god wanted me to do this". For instance, the other day an acquaintance of mine who  just finished her journey through the valley of death with a brain tumor claimed god was the driving force which sustained her will to live and guarder her life through both the surgery and post-operation. I immediately felt animosity towards this woman who was pampered at the UCSF campus. How could one dismiss the surly fascinating delicate hands of the surgeons who removed the tumor and inserted a ventricular shunt. If it was not for these awesome people she would be dead. No questions asked. I guess I may be biased because I am viewing her statement from a medical standpoint but, to me this statement is a direct slap in the face to her respective care providers. Anyhow, other religious believers are more logical when it comes to the prospect of medical intervention. For instance Chuck Smith(he patented the first Calvery Bible College and Church) was diagnosed with appendicitis. After fervent prayer for a week he sought a doctor and when he received the diagnosis of appendicitis he had it removed. When you come across a painful situation it's best to go forth and seek treatment even if you know it's not going to be a walk in the park. 

One last aspect of this colossal; argument is the rights of the fetus itself. How does one know what the fetus wants, given this entity is considered a human. The answer is simple. No one does. When prospective parents encounter these life changing dilemmas there truly is a sense of helplessness in the sense whatever decision they decide upon will never be guaranteed to fit the needs of a fetus. I will now end this blog with a quote from a wise man Stevin Weinberg. The effort to understand the universe is one of the very few things that lifts human life a little above the level of farce, and gives it some of the grace of tragedy". 

The disabled job seekers dilema; are we the victims of unjust hiring practices?

Money is truly the precious commodity which makes the world go round. The issue of finances separates the divide between a life filled with luxury as opposed to a life filled with anxiety over the costs associated with life. How does one obtain money? There are two ways of earning money from my knowledge; these include receiving SSDI or receiving a job with monetary benefits of course. The second option I named has become the center of my world and the fulfillment which will satisfy my desires. The driving force fueling the fire in my desire for employment is simply attributed to my lack of success at finding a job. An arrogant individual might comment, Well your not looking hard enough!.  This I assure is not the case. I have reflected on the reasons for my unsuccessful endeavors toward employment and again I have two separate answers to the mystery. The first being the lack of jobs due to budget cuts and the disenfranchised state of the economy in 2012. The next answer I concocted to my own question is simply because individuals (superintendents/ bosses) unconsciously desire perfection and with this desire for perfection comes the necessity to adhere toward the desired physical appearance favored by society. Certain individuals such as my sister have told me various psychological studies have concluded better looking prospective job seekers always receive the job regardless of age, sex or academic studies. This makes perfect sense in a way as no one desires to see "ugly people" on billboards or over the makeup counter at Macys. On the other hand, I am despised at myself for attributing my misfortune on my outward physical condition. If, I am honest with myself I must admit if I look hard enough eventually, eventually my efforts will be payed off by a pay check in my hand and the bliss associated with a personal victory. After reading my personal debate over the issue of employment for persons with disabilities; I would like to ask the opinion of anyone who is reading this blog as to what is their opinion regarding this matter. There is two sides to every argument and I feel like I'm isolated in the middle perplexed to choose my place on either side. Which side you stand on?

* There will be more text added to this blog in the next hours to come. I just wanted to post a thought provoking blog for my FB friends!