Friday, September 28, 2012

     This here's blog is mine and I have decided to base it off inner beauty! Finding who you are and discovering yourself amongst this mess of a world we live in. Souring over trials and hardships rather than struggling through them. I have my life story to tell, giving a background as to why I have decided my "theme".
     Age fifteen, as a young teenager I (everyone) went through bodily changes amongst fitting in, being "popular"/cool, doing well in school (teachers pet), achieving the highest degree in extracurricular activities (Karate, which I have my black belt). All that changed. My priorities that had seemed so important to me such as popularity came crashing down when I became very ill. I had to leave all these worldy funnn social life attributes behind and had to focus on healing and solving a "medical mystery"(Which kind of still is).
     I began to show signs and symptoms when I was 12. My mother (single at the time) assumed I had asthma and got myself an inhaler, but it never helped. I would use it when I felt I was having difficulty breathing, but I would continue to weaze. I just lived with it not thinking too much about it. One Saturday when I was 15, my family was having a barbecue. While getting pictures taken everyone thought I was angry and upset repeating to me "SMILE FOR THE PICTURE!" In my head I was smiling and I didn't understand why they were getting angry with me, so I went into the bathroom and smiled in the mirror, but a smile is not what I saw, but yet almost and angry frown is what my facial expression proceeded to do. I was so distraught and confused. This happened on and off for a couple months, again it was weird, but wasn't something I couldn't hide from my oh so important friends, protecting my "cool" status in school. If I was laughing I would cover my hand over my mouth and for school pictures I did a half smile (no teeth). A few weeks after school had started (9th grade), on a sunday, I woke up and discovered this was something I could not hide so well, my left eye was drooping just enough to look "weird". I thought it was because the following saturday I had participated in a karate tournament. During sparring I got side swiped, direct hit to my left eye, (Killer, hurt so bad), but the problem with this thought was that my eye was not swollen or in any sort of pain. My mother (I call her Mui) and I decided just to watch it for a few days. To my discovery my mom was kinda freaking out about these recently odd changes in behavior and physical changes. After my eye began to droop it was quickly after that when I was showing signs of a stroke. My entire left side became almost paralytic. My right side was following in it's steps aside from the drooping of the eye. The following Monday my mui took me to an InstaCare where the Doctor seeing me told my mother that I needed to see my Primary Care Physician ASAP. A few days later I saw him, who referred me to and Ophthalmologist and a Neurologist. I was freaked out because by this time the muscles in my mouth were so weak I couldn't speak, my words all slurred together, I couldn't eat because I couldn't chew so mother made me smoothies, but then it got to the point that swallowing was difficult and I decided not eating was better than even trying.
     For a fifteen year old who cared so much about looks had all changed in the matter of 2 weeks and I became fully dependent on my mother. I needed assistance getting up and down the stairs in our home and help getting in the shower. Once in the shower I was able to wash myself, it just took me along to to do so. Mui would offer to help, but I was and have always been and independent person and getting that sort of help was "totally embarrassing" and still is to me but I am more open to it when I need it. I had MRI's done and CT scans done, reflex tests, e-stimulation done, and tests that shocked my nerves to check the responses. While seeing specialist after specialist I also had a Edrophonium (tensilon) test done, which is an injection of 2mg of tensilon intravenously, the outcome of this test, if it were positive would have been in a matter of seconds after the injection my droopiness would have depleting for acouple of minutes, but in my case nothing happened. Thus indicating the rule out of Myasthenia Gravis. The dr.'s were stumped at this point and very confused, so I had some lab work done and when the blood tests came back showing a massive amount of auto immune receptors and acetylcholine antibodies in my blood thus indicating I do in fact have Myasthenia Gravis. (The antibodies were showing even more prominent than most cases of MG). You cannot have a tensilon test come out negative and blood work come out positive for MG. But you can the other way around. The tensilon test can be positive and the blood work negative if the MG is only affecting the ocular muscles (eye muscles). So my Neurologist did the Edrophonium test on me for a second time but this time giving me 10mg dosage rather than 2mg. This time after about 2 or so minutes my left eye (the droopy one) fluttered open for about ten seconds and they took that as a positive and diagnosed me in August of 2006 with Myasthenia Gravis.
     Myasthenia Gravis is a Neuromuscular disorder/ autoimmune disorder (a type of Muscular Dystrophy). MG creates antibodies that block the neurotransmitters from nerves to muscles causing weakness to the skeletal muscle/ voluntary muscle. i.e. I think about moving my arm (voluntary muscle) and sometimes it moves and sometimes it moves at a much slower more fatigued rate. The thymus gland, which helps with your immune system is thought to contribute to active MG. In some patients it is inflamed, others may have tumors on it, and like mine, in can be normal, but Dr.'s often times schedule surgery for patients to have their thymus gland removed in hopes that it may deplete some if not all they symptoms and put patients into remission. I had mine taken out just before Halloween of 06 and I, even after the surgery was still very "ill". Prior to the surgery I went on a total organic diet in hopes the I may recover quickly (which I did). I was in the hospital for 2 days and then went home. Remember your thymus gland is located just behind your sternum and near close to your heart. This surgery was very much like open heart I have a scar like any other patient who has had cardio surgery. Most patients are in the hospital for at least 5 days to a week. I was in there for 48hrs and that was brutal ;). During the organic diet, I was already "not" eating (eating very little) that I became so skinny and gaunt. I lost give or take 30lbs. I am already a small person genetically as it is weighing at that time before I became ill 90lbs. Losing weight and that much for how small I was, was very worrisome and I personally hated myself for it at the time.
     This disease has been a life changing event and I am so thankful for it. Yes, I still have problems with it but for the most part it is managed with little flare ups every so often. I have realized my religion and family are the most important not looks (which I still like to look descent) and popularity. I have become a much more giving and understanding person and truly care and sympathize for those going through hardships like mine.

     Over the past year and a half I have been having "mystery" pain in my lower abdomen. I have had a colonoscopy, an exploratory laproscopic surgery where my OBGYN discovered a minute amount of endometriosis and 2 hernias. She scraped out the endometriosis and about a month later I had a general surgeon fix the hernias. All three of those procedures I responded poorly to the Anesthesia. The colonoscopy I had a difficult time waking up and was down for a couple days at home. The second procedure I ended up being hospitalized for three days do the extensive weakness and the third one I was in the hospital post surgery for five weeks. I had the procedure done at one hospital transferred to a different hospital that specialized in neurological disorders (My MG) and then transferred to another hospital for physical rehabilitation. I had to learn how to eat, walk, sit up, and balance all over again. After all of this I still had horrible pain. I then had a Hida scan done, which is a test on one's gallbladder that came out abnormal so about four weeks ago I had it removed. Helped the nausea  subside and I can eat food (as long as it's not too high it fat) without feeling ill, but I still have awful pain most days. Post this surgery I was in the hospital for almost three weeks. Again being transferred from three different hospitals.The dr.'s are confused because the test they do (which shocks my nerves and muscles) shows no sign of MG, but my blood tests come out super positive. I have been tested for MS and Lupus and cancer and everything else that would explain this reaction to surgery, but nothing fits just right. So they have diagnosed me with conversions disorder. Which is a disorder basically stating my body deals with stress poorly... I am so confused and in so much pain, my body has been through so much this year (more than ever), I need to "elope". I don't mean elope as run away to Vegas and get married (I am already married, since May of 2011). What I mean is a New beginning.
     My grandma taught me to always, no matter how I looked or felt, each day look in the mirror and tell myself I am beautiful. I have found my underlying beauty. Now I feel it's your turn. AESTHETICS is the key. you don't have to be perfect or a model, in fact you don't have to be anything but yourself to be beautiful. My question is, Who are you? These trials this past year for me and my MG have truly helped discover me.