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Friday, April 19, 2013

Simple Signature for Chiari

Hello everyone,
This petition is to get ALL Primary Care Physicians and Neurologist become educated on Arnold Chiari Malformation and add CM to the Social Security blue book. I'm not sure exactly how to go about spreading this around like it was a desease so I can get it signed. We need your help. Do I climb a mountain to scream for help? Nah!!! I think I might fall doing that. And besides, I'm pleased to say it's only been a week since I really touched my walker...sad :-( to say the auras may be back..But this blog isn't about talking about me...well it is but it isn't. It's about ALL Chiarians who need help...YOUR HELP...
PLEASE HELP ME GET SIGNATURES!!!! We never seem to get enough signatures from people every single time.
I know everyone has their own problems. I get that and understand. But this will only take a few moments of your time while you are surfing the web taking a time out of your daily life to help some of us get to our goal. We really NEED this. PLEEEEEEASSSSSSSE!!!! sugar on top.
I'm so frustrated not being able to get the proper medical attention I need and so is the rest of the people I have talked to who suffer from Chiari Malformation.
We really need your help by signing the petition and getting the word out to friends and family. The deadline is May 12, 2013 and we need 100,000 signatures. Help spread the word.
Thank you for listening...well reading and taking the time for signing.
Blessed Be

Tuesday, April 16, 2013

Chiari diagnosis then surgery

Oh by the way, feel free to leave your comment on the bottom. I promise I won't least not too much :)
Now on to Chiari Malformation...
OOOOOHHHH!!! my head heats just thinking about it!!! j/k
If I have to have a scare for the rest of my life on my head/neck, why not say it and be embarrassed about it. Do I like having being sick? NO!!! who does??? That's a stupid question. It's almost like asking a person who just farted in front of you and it's just the two of you in the room. Did you just fart? C'mon now!! Sorry, I know. Let's be real!! No one wants to be sick. But at least I can joke, be a smart ass about it, I can scream about it, I can pretty much do whatever the hell I want; just like everyone does whatever they want with whatever they want with their life. I'm not laying down. Never have and I'm not about to start now.
This particular blog is going to feel more like a nightmare to you reading but believe ME, it's more hell writing it. I want it out there. I'm so sick of having it all built up inside where it's ripping out my guts. I wouldn't be surprised if this is what caused the Gastropareis stuff I have. With all the medications I have been on over the past...uuuuuuhhhhooooooooohhhh I don't...I can't remember...I know it's been over 10 years. I'm surprised I'm still alive. morphine patches, fentanyl much fake, chemical, heroin can a body actually take before it just says YOU'RE DEAD!!! YOU ARE DONE!!!
Doctors knows best, they say.
And so it begins...
Back in 2002...WAIT...let go back farther...7/7/ accident...banged my head a few times...some how ended up doing some kind of program called Phase II at Mt Sinai in NYC for people with Traumatic Brain Injury...I remember bits and pieces. I saved everything from when I was doing the program (only way I can remember it) and found a report not to long ago saying something about me having Chiari back then. but NO ONE mentioned it. OK. granted I can't remember anything because my memory sucks; but I think family members would have said something, right? If they knew about it...
Fast forward to 2002 since I'm not here to talk about my car accident or anything about it. you have questions, feel free to ask away in the little box below...
Ok...we are in 2002, I'm in crazy land. I had been for some time, NOTE: I'm very good at masking my feelings, thoughts and so on. I learned that growing up. Only let people believe what they want to believe because they never want to hear the truth. BUT this time I just couldn't control myself. The pain was so unbearable. My moods didn't know if they were coming or going. I would drop at a hat for no reason at all. When I say drop, I mean drop to the floor. I would just fall for no reason. My legs would just give up on me and I never once saw it coming. My thoughts were scattered and that was when I could think best if, at all. I couldn't even focus straight. I would constantly snap at people. PEOPLE!! Never mind people. I didn't even want to be around them. I hated them. The noise just drove me nuts. It just hurt inside and out. DON'T TALK TO ME!!! It really hurt physically. The vibration of voices just hurt. If people talked at a normal tone, it sounded like they were screaming. It was bad enough I couldn't focus because I was in so much pain as it was and have to explain was just too much. My jaw would lock or at least it felt like that even if I tried to move my mouth. Don't even mention food. It took too much work and it was just nauseating that awful smell. You want to sleep but you can't sleep. You are so tired but your awake. It's the worst roller coast ride from hell and I wanna get OFF!!! The way I started to walk was just odd and not me at all. I felt stiff at times for no reason. Some time it was just one leg or both or all my limbs, just fingers, the arm part but not the fingers, same goes for the legs. At times I felt like I was floating and could feel the ground under me and I would miss step end up falling. Felt like my eyes were playing mind tricks on me or my brain was doing it. But the pain. If I could just cut out the pain, I'd be happy. My brain felt like it was being squeezed by a crusher with no exit because of my skull surrounds my brain. Then my hair...OMGOOODNESSS my hair!!! If there are Gods of hair, please tell them to stop pulling my hair so I can at least lay my head down. I have to keep my hair short so the pain is less. I can't even touch my hair at times. I stayed in bed a lot because of the dizziness. Even being in bed I would get dizzy. These are some of the symptoms I have had and still go through. Chiari-Life expresses perfectly what it's like.
The neurologist I was seeing diagnosed me with MS and sent me to a psycho who said I was bipolar. I was being treated for both. neurologist also sent me to physical therapy (PT) because of the problems of motor skills, etc...During a session with PT she said she had noticed a few things that didn't correlated with MS patients. I didn't know what to think except to ask her what she thought I had. She said she wasn't sure herself but suggested I see a physiologist who does studies of everything. Lucky for me, PT office was attached to whole team of different doctors and one was coming to see a patient, she called him over. Long story short...I was admitted into the hospital and detoxed off all my medications (18 different meds), retested  and I was newly re diagnosed with Arnold Chiari Malformation I. This was in the summer of 2004.
It took two years to get the correct diagnosis, BUT at least I got it and I am very happy I got it. My new doctor explained to me what Chiari Manformation was and he prescribed me one medication. He also explained that I had a few decisions to make on whether I wanted to continue living the way I was or if i wanted to have surgery. He also express there was no cure for Chiari Malformation. If I chose to have decompression surgery there could only be three (3) out comes. A. I will come out of surgery with no complications and I may need to have an other in a few months, years or not. B. I come out of surgery paralyzed from the neck down or C. I don't make it. 
I was glad he put it so bluntly so I didn't have any surprises, but I have to say, I was scared out of my mind. I've had surgery before but this one had me. I was convinced I was not going to make it. With everything I had already gone through, there were no more 9 lives left in me. I didn't led on to anyone what I was feeling or thinking. Everyone knew I was scared. Who wouldn't. Never mind getting cut open but it's brain and spine they are touching. The doctor ever told me to do some research online. He told me about a few doctors; but suggested I do my own research as well. He already know how I was. 
I prepared a 20 page list of questions to ask these doctors. The way I looked at it was like this. If they are going to cut me, cut bone and can mess up because after all they are humans, I want some one who doesn't have the "God" complex. some one who has experience but not too much where he/she thinks he/she can't make mistakes, some one who has bed side manners (not in a rush to get to a "golf" game). Bottom line, I want the doctor to take their time with me and show they care about their patient and they understand what Chiari is and is there to help us. This one doctor just brushed me and my questions off by saying "You don't have to worry about that. I know what I'm doing. I'm a doctor." Well, guess what doc, you're fired. you're not touching my head. NEXT!! Needless to say, I went with Dr. Jonas M Sheehan, MD, FACS Milton S. Hershey Medical Center. He was AWESOME. The whole team was gRRRRRRRRRRRReat. Surgery went well. 
 Both photos is when I'm about to be wheeled of into surgery Sept 30, 2004.
The next photos I'm going to show you is after surgery. I was surprised he didn't use staples since all the photos I've ever seen, all have staples. 

It took about a year for me to fully heal from the surgery. part of my scalp is still sensitive on the side and around the area of the scar. The only form of exercise I can is in the pool. I can't go into the ocean. The deeper i go in, the more pressure I feel in my head for some reason. The following picture my scare from a Feb 16, 2011 ago...
A few months after surgery, I moved to Florida. It's been hard ever since to find a neurologist who can help me. Insurance issues. There aren't too many doctors who know about Chiari and it makes it even harder when they just want to give you a quick band aid and send you on your way. 
Now That I have shared a little history of what has happen, I will give you the "scoop" of the most recent events that have accord in the next blog...
Until next time...Blessed Be

Sunday, April 14, 2013

How I was diagnosed with Gastroparesis

There are few illnesses I suffer from but right now I'm going to talk about Gastroparesis (GP) and how I deal with it. You can pretty much google the word and BAM!!! a ray of stuff pops up. I will leave that part up to you to do...HINT: do some research and tell me what you find :-)
According to the U.S. National Library of Medicine, gastroparesis "also called delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine. Normally, the muscles of the stomach, which are controlled by the vagus nerve, contract to break up food and move it through the gastrointestinal (GI) tract. Gastroparesis can occur when the vagus nerve is damaged by illness or injury and the stomach muscles stop working normally. Food then moves slowly from the stomach to the small intestine or stops moving altogether. Most people diagnosed with gastroparesis have idiopathic gastroparesis, which means a health care provider cannot identify the cause, even with medical tests." In other words, my stomach is paralyzed and don't know why. Makes me wonder why they make wording so complicated and things so long sometimes. 
About four years ago, I had collapsed from the abdominal pain I was having. I was having cramps but I was dealing with the pain as best as I can. I had told my doctors about it. I had upper and lower GI exam (if you know what I mean) done; but nothing was found. I started to drop weight but nothing as bad the last two years. But the cramps got worse and the doctors said nothing was wrong so I figured it had to be all in my head and began to brush it off. I would feel cramps and get an under fever and i'd just ignore it. Something is wrong with the thermometer. Over time it was getting worse when came that night I collapsed. 
OMGOODNESS!!!! I HAVE NEVER IN MY LIFE BEEN SO COLD!!! Where is the oven? I wanna get in and roast. BUT at the same time...THE PAIN!!!! If I had a knife, I think I would have at least tried to carved my guts out right there and then between the pain and fainting. I was at the bar my other half Gary worked at during closing (...and NO I don't drink) and am I glad I was there. If I was home, I would have been alone for hours. Matt saw me plastered on the floor and called for help while he was trying to get me up. These guys are awesome. They all took turns keeping an eye on me when i was there. Anyway...Matt and Gary propped the doors open got the car, while the girls held me up in the stool. I kept on fainting. Once Matt and Gary got me in the car, off we went to the ER.
When my temp was taken, it read 91 degrees and I was sweating. They had to retake it a few times because they couldn't believe it. When I went into the back, they wanted to give me morphine for the pain but i refused it. I told them that morphine lowers the body temp as it is and I'm at 91. It's something else or nothing at all. They insisted on the morphine only. I just refused it for my protection. I rather die in pain then have a chemical kill me. End result according to them was it was due to my ovaries. Which to me made no sense when I came in with abdominal pain from going to the bathroom with blood in my poo poo and I was fainting and I had an under fever. My monthly is always normal. 
Fast forward to a year ago...still having problems. doctors still saying everything is fine. Then one day my primary is changed to a new one and he sends me to a GI doctor, who then sends me for a sonogram of my stomach and gastric emptying know when you eat the eggs. YUMMY!! ULTRAVIOLET EGGS!! or is it green eggs...where's the bacon?? All I know I spent the day there getting tested and I was sure glad someone was finally listening.
To me it was odd that I was dropping weight the way I. Gary and I ate the same food. I should know. I cooked it. But there were times were I couldn't stand the smell of things because it made me sick to my stomach. There were time I was already in the bathroom puking or worse, I had a bucket in my hand and the bathroom was my true best friend. I proved it a few times by moving my laptop in there a few times. hahahaha THANK GOODNESS FOR WIFI!!! j/k But you get my point.
Once I was finally diagnosed...HALLELUJAH!!! it made sense. vomiting, nausea, dropping weight, belching away (which by the way felt as if i was drinking soda 24/7)...I learned a few tricks with the gross belching. I am now training for opera...constipation or the other way around, the conversations my stomach always seems to try to have with me. I'm still learning the language and I'm still stuck on a few mis-communication barriers there between the stomach and I. Along with these and having all the other symptoms, it was clear I had gastroparesis.
I am not diabetic, which was odd to me at first, but I do have neurological issues (Chiari Malformation). I will get to that some other time and link the two...
My GI doctor had the information in my file and I reminded him hand full of times I saw him. He prescribed me a couple of medications and told me that I could continue to eat what I wanted but in moderation. I was like ok. cool. The medications included metoclopramide (Reglan) and erythromycin.
Let me get the erythromycin out of the way first since it's easier. I'm allergic to anything that ends with -mycin. Now I have no idea how that happen. Why it started. It just came out of no where. I've always been a chap stick freak and then one day my lips just BLEW UP. I mean Angelina Jolie had nothing on me. 
I have picture...

and it got worse when I was prescribed more antibiotics-orally (Z-pack) and cream to put on my lips. hahaha I don't know if that was cruel or funny; but it sure was both at the same time. I still laugh about. The joke that were thrown at me were-well worth having cracked lips just to laugh at. Hey, if I can dish it out, I better be able to take it too. I had it coming. So no antibiotics or creams that end with -mycin for me. 

Oh and this is how my lips are normally...

Now for the metoclopramide, which also happens to be the same thing as Reglan, I was more then happy to take. I took it to CVS with the rest of my scripts and dropped it off. When I picked it up, THAT is when my eyes just popped out of my skull. 
Self: FDA Black Box Warning? What the heck is FDA Black Box Warning? I've never hear of THAT!!! WT...Hey Gary, Have you ever hear of FDA Black Box Warning? He's saying no too...This is weird. I gotta check what's up with THAT before I take ANYTHING.
I get home...go online...and GOOGLE away FDA Black Box Warning and this is what I found on Wikipedia Now FDA came out with their "watch dog" called Drug Watch which explains all about the labels, warning and our good little friend "FDA black box warning" that go on the pill bottles. Short version: take at your own risk. this pill is one step away from being pulled. your choice to take it...At least that MY version. Their version is "The FDA uses black-box warnings to protect consumers..." Got to love how "they protect" us "consumers" right?
I'll tell ya... It scared me to death. I called my primary, my GI, and my neurologist. Both my primary and neurologist said "absolutely NOT" to take those two medications. When my GI called me back, I flipped out on him asking him what was he thinking knowing that I already had neurological problems and allergies. Wished him a nice life since I already had an appointment set up with my primary to get a dietitian and the neurologist, well I will get to that next time...
Primary set me up with a dietitian and a new GI in Tampa. She already new I didn't want no goof ball or quack of a doctor. No offense to anyone but c'mon now. I do have to laugh. This past year and a half, I really have no idea how I made it. There isn't even a handful of people that know what I was thinking or feeling during this whole time. Most of the time, I just fed them what they wanted to hear. Gary knows.
He even felt the pain I was feeling. He's the only person I can really say I can count on for anything. I lost count on the amount of times where he's scrapped me off the floor. I remember when I couldn't hold it and didn't make it and I just cried and cried from embarrassment in my own home and he just cradled me telling me it was ok. He's in school trying to better himself and shouldn't have to worry about if I'm ok; but he does. He's one in a million and more than infinity. I can go on and on talking about what he does for me. One day I will. Getting back to how I was diagnosed...
While waiting to see the dietitian, I was searching the web to learn as much as I could about Gastroparesis. This is when I discovered Crystal Saltrelli, CHC. I haven't been in any of the classes since I can't afford them but I do have her e-books, get her e-mails, follow her blogs, pins, etc... I had no idea there was a "special" diet involved. 
I finally met with the dietitian and she gave me pages of what I could and couldn't have. Low Fat, Low Fiber, High I building muscles here??? Now here is the challenge for me and the dietitian comes in. I have to follow THIS DIET?? but this diet consist of no seeds, skin, cow milk because I'm lactose intolerant, no legumes, no green veggies unless they are cooked very well or pureed, no more then 5 oz of chicken or fish a day, no more beef or pork unless it grounds but for now none and the rules ARE just ENDLESS on how I can and can't eat. Just give me jars of baby food and I'll be good to go. EEEEWWW!!!! WAQUETA!!! WAQUETA!!! YAK!!! WHAT WAS I THINKING WHEN I THOUGHT OF THAT!!!! Have you ever eaten jar baby food?? How do those poor babies eat that crap. How do mother's feed them that. hahahahaha Did we eat that crap when we were babies??? hahaha DAMN, We had poor taste back then. hahahaha Thank Goodness for Pinterest because I discovered tons or GPers with recipes and tips and support. I LOVE Heather's pins. She always has some thing fresh and AWESOME ideas to share with other GPers. The we have Mary K who is a chef, so you know you will get good cooking stuff from her. They both suffer from Gastroparesis as well.
I reached out to Heather at one point because of my weight lose. It had gone down to 113. I didn't know what to do. I was at my breaking point. This diet didn't make any sense to me and I didn't know where to start. Nothing I ate was staying down. By the time I met with the new GI, my weight was starting to go down. He basically told me to try to keep my weight up and follow what the dietitian said. It was almost like they were telling me, "Here are your tools, now be a good little girl, and go on and use them." GEEE Thanks. Now how exactly am I suppose to use them if no one has taught me how?
At that time, my weight was still healthy but I had to add protein shakes to maintain it. I had just gotten it up to 125 lbs between seeing my primary and dietitian. That is good for my height; 5 feet 5 inches. If I go higher it would be a little healthier, I think. The lowest I've ever been has been 102. But shhhhhhhh!!! don't tell anyone. I fought hard to get back up. This past week I was so happy I gained a pound. I am now 119 pounds. I have gotten to the point I start celebrating for every accomplishment I reach...gain a pound, I do something nice for myself. Go potty, do something for myself. Didn't puke today or get nausea or whatever it is, I do something for myself that way I can smile. Always be proud.
I wonder how many GPer take Domperidone. Has there ever been a comparison done between Regan and Domperidone? Like here's what the FDA had to say about Regan and Domperidone. How is it that Reglan is still out and Domperidone isn't? Makes no sense to me. I take a few other medications besides Domperidone. One day I will have to post them all.
Now that I am established with the GI, constantly fighting my weight, food issues, bathroom issues, medication issues, money issues and the list goes on. and on...I'm left to wonder how do I win this battle? I left some parts out which I know I will get to them sooner or later or not at all. 
One thing is clear, so far I've been winning the battle of stay away from the feeding tube because of my blood work. I have the protein shakes to thank for that. I use Lifetime Life's Basics Plant Protein (vanilla or chocolate is what i like, they have more) and Orgain (any flavor check their web). I take the Orgain when I'm on the go usually. and the Lifetime, I mix it in when I'm making a shake/smoothie. Sometimes I will add it into pudding mix or some kind of bar I am making. I just bought a Manitoba Harvest Hemp Protein powder that I can use so I can bake with and add into hot stuff as well. I haven't tried yet. I'll post what happens when I do. I want to keep it that way. (amazon)
My goal for now is to finish school and maintain my weight and one other thing (next post you will see). I've come to realize in the past year and a half, everything has to be in baby steps. Just like how I eat. Small portions. I will never know what comes next, just like I will never know when I have to go; but always know I always...the porcelain throne. We as GPers want a few things, and one of them is to always want to exit like this...
 In the mean time...'s a little interesting read for everyone if you ever find yourself somewhere in the house. This is why I have taken back control and no longer feel embarrassed about what has happen with my body. Some may find what I will say gross or vulgar; but in reality, it is not. 
I'm no way happy that I have Gastroparesis. It's not fun at all. People who I thought were my friends shut me out because of it and because of my other illnesses. They have their own lives and own problems. I've come to terms with it ALL. I'm in a much happier place and I embrace it. People who haven't been in my life in a while have shown up. Have helped me. Complete strangers from other states who I don't know have have helped me. I embrace that. The little that do have, is worth more than a million and more. My loved ones who are not close by are always near by the support they show and give me. My number one fan, Gary is always by my side no matter what. To me, that's what is important and all that matters. They give me strength. With that strength is where I am taking over.
While some GPs are helping others GPer with the recipes and diets....AND DUUUUUUUUUUUDDDDDDEESSSS, DON'T STOP!!! IT WORKS!!! I give all of you mad props for everything you do. With out you, we would be here. I will not forget the ones who advocate for us GPers. There's a few out there. G-PACT is one of them who out there. They have a Personalized Restaurant Card for when you go to a restaurant, you just show the card so they understand what GP/CIP is and you can order from the children/senior menu. HOW COOL IS THAT!!!! I mean really. Think about it. We only take a few bit sizes of stuff and put it back down. What's the point of paying full price or even going out. Thank you, G-PACT for coming out with such a wonderful idea.
We have those on facebook too...G-PACT, Greens Not Easy, Gastroparesis-The Invisible Pain
Gastroparesis Awareness NorthWest,and GastroParesisUK just to name a few.
We have a the bloggers who help (some are mentioned above)...Journey with Gastroparesis, Emily's Stomach, Living with GP, and Living with Gastropareis. I'm sure there are more out there.
I may not be feeling good physically, but mentally I am feeling better then before. I am ready to take on the world. Share what I have gone through and what I will go through in detail. I will not hold back. I want to express my thanks to everyone who has been in my life, including those who walked out on me. I am even stronger now then I was before because of them. I realized once again, I can make it and do anything even better than I could before. This all means I am going to get through this with flying colors. 
So here's to us GPers. We stands together and and we stand strong. 
And look out...I have a BIG MOUTH and I plan to use it.
Until next time lets...

So we all can say...
Blessed Be :-)

Saturday, April 13, 2013

Going back to School...

I've been going to school for Medical Billing and Coding since October of 2012. Although classes have not been easy at all, I have found them to be fulfilling so far. Without a doubt I'm learning a LOT. My classmates are gRRRRReat. At the beginning, one of the girls came up with a name for us. THE CHAMPS! I say that with pride.
I smile every time I think of the name and what it represents. I reminisce about all the women from when we first started...we all have different backgrounds with different stories; with different struggles. Yet somehow, we managed to stay strong and focus to get to where were on that day when we met online for class for the very first time. Now, it's just a 6 pack of the Champs left from the originals trying to hang on until July 'til graduation and then study for the BIG ONE...the certificate. They warned us it would be hard. They told us, some would drop out of the program because "they can't hack it, some would be left behind, and some will realize it's not for them; only leaving a few if you’re lucky."
There are 6 Mondules we must complete with 2 MIBC (courses) in each lasting for 6 units (weeks). I'm now in Module 4 finishing up Unit 5. Sundays are the starting days of the units; Saturdays are the end. I've learned Anatomy, Physiology, & Terminology; Coding (ICD-9, CPT, HCPCS); Health Information Management; Medical Office SoftwareInterpersonal Communications in the Healthcare Setting. We are at the midway point in learning about the Medical Insurance & Billing. There are a lot of procedures to learn and ways on how to go about each one. Next will be Career Development; Medical Law and Ethics; and last but not least...drum roll pleassssssseeee
Pracitum/Certificate Exam Review. This last class will tie EVERYTHING together nicely and prep us for the big exam we have to take to get our certificate. NO job W/O certificate. Taking and (most importantly) passing this certificate means I will be able to get a job anywhere in the world if I wanted to. I could work for WHO!!!! HOW COOL WOULD THAT BE!!! In case you don't know who that is, it's World Health Organization. I can move to any country and work there. All of the coding system is universal.
In fact, the education I am getting gives me more of advantage in a way since I would be "up to date" whereas most coders aren't in the US. They don't have to be until 2014. United States of America is the ONLY country in the world that is behind in the coding system about 10 years or so. While we are now starting to get up to speed with the rest of the world, the rest of the world is in the process of updating theirs. It's in the "beta" phrase now. Isn't that just crazy???? BUT, interesting at the same time.
Anyway, getting back to World Health Organization...
Now, if this was the real world, where I didn't have Chiari Malformation or Gastroparesis, OH MY GOD!!! I'd be there in a heartbeat at their beck and call. I'd be their gofer if they wanted me to be. I have a degree in Social Work/Human Services already. I had my life all mapped out. I always knew what I wanted and I was heading in that direction at my pace.
I mean C’mon now. Really!! Who wouldn’t want to work for WHO??? Hahaha that sounded funny. Almost sounds like “Who made who” but not…oh never mind…
Ok, NOT everybody wants to work for WHO but I have always had a passion for helping people. Yeah people might piss me off but it’s those people who take advantage of the weak who piss me off the most. Thank goodness for certain people who care enough to want to help and fight for the weak; i.e. World Health Organization and Amnesty International.
I look forward to graduating. I have no idea what is at the end of that road for me right now. I'm fighting like hell to reach for it to the point I can taste it. I'm so close to that finish line and I see the banner up a head with the letters in clear view speaking to me F-I-N-I-S-H L-I-N-E!! All i have to do is just touch it and it will be mine and it's concord. Even with me being sick, that hasn't stopped me. My fellow classmates tell me I inspire them to stay strong and to finish. I don't see how. I just look at life as it is what it is and that it. There's no science to it. What ever is through at you, you just have to take what you can get and just go with it. It is what it is.
Here's to the future...whatever it may bring...

Friday, April 12, 2013

Do people think before they open their mouth to talk to you?

I posted on facebook exactly how I was feeling, which is "I feel like shit having my puke bucket with me, ice packs on my head, coffee filled with ginger to help with nausea. already took meds (which will take effect pretty soon)." and I posted that because my better half made a statement saying "You are so cute and adorable." I thought It was so nice of him to say. After going back and forth with my close friends and family, they made me smile and feel better. But then I get a comment from someone saying, "Tanya, How are you feeling?" REALLY!?!?!? DID YOU NOT READ MY POST??First off, I haven't from this person in months and which is odd that they would make a comment in the first place. Secondly, I'm wondering if they are being sarcastic about how I'm feeling. Everyone on my fb page knows about me having Chiari Malformation and Gastroparesis. I don't keep that a secret. I think it is important for us who suffer from Chiari and Gastroparesis to express what we are feeling physically and mentally to bring awareness to others...
Anyway...Moving on...
I was going to leave it alone and not respond since it is posted right there in plain view. I mean come on now, this person did respond to the post by asking how i was feeling. But being ME...the person that I am...the person most people "think it, but don't say it" kind of person but actually say could imagine. I just couldn't help myself. I was cool and was nice enough to not direct it to this person and this is what my response was: "Oh, I'm fantastic, I'm about to out, hop on a shuttle and fly out to moon to blow off some steam so no one can hear what I'm saying. I hope it feels like a roller coaster ride. I miss those. When I come back, I hope they let me jump out with a parachute since it's on my bucket list...oh wait...I can't do that. I have Chiari. i dumb and stupid of me. let me slap my head and give me some more pain. you think i can have a bacon cheese burger? oh...never mind..." and left it like that. My cousin was going say something but I beat her to her.
In laden terms, what I was saying, I feel like crap. I wish I could do the things normal people could do but I know I can't because of Chiari. At the moment I feel even worse because of the physical pain I'm in. It doesn't help matters mentally because I'm hungry for a nice bacon cheese burger, which I know I can not eat thanks to Gastroparesis. I'm still doing fantastic. I keep my dreams alive and still have hope that one day things will change. But I sure as hell have these bad days (more bad) and good day just like everyone else. Right now it's a bad day, this person can't tell the difference so I just drew her a dream and played dumb.

"No matter what you're going through, there's a light at the end of the tunnel and it may seem hard to get to it but you can do it and just keep working towards it and you'll find the positive side of things."

-Demi Lovato

Thursday, April 11, 2013

My first Blog

I have decided to start blogging now. Why wait? I don't see what better other outlet to use...let go of some of the things I have building inside of me and share it with the rest of world. I know I'm not alone when I begin to say all I will the things I will be saying. I'm tired of feeling like I live in a closet where no one sees what really goes on in my everyday life. I'm tired of pretending everything is just dandy. I'm tired of people telling me I look so fantastic because I lost weight while I'm actually under weight. I question their eye sight. Better yet, societies eye site since all those magazines have those skinny people. I live in a constant battle wishing I could gain weight. When I do gain, I wonder if it's due to the fact that I haven't gone to the bathroom for a few days and I'm just backed up. I actually celebrate when I actually go potty. I get over joyed and excited. It might sound crazy to some people, but that's just how it is. I have Gastroparesis.
Now here comes the fun part...
Picture a car that no longer works getting crushed in one them machines but instead it's the brain that is expanding inside the skull and feels like it's going to explode. That's one of the pains I get on a regular basis. The other one is imagine your hair is in a very tight pony tail, so tight you wanna loosen you hair but can't since, in reality your hair isn't even in a pony tail. You can't even touch your hair, it hurts too much. There are times I get both pains at the same time. Good thing Gary (my better half) can understand me (for the most part) when I get this way. I end up not being able to move my jaw which causes me to lose my ability to communicate. Regardless, talking would hard anyway. the vibrations would make the pain worse. I would say i have a headache 8 out of 10 times a week. Without a doubt, I wake up with one. All this, I give thanks to Chiari Malformation I.
There's more to it than what I have given you in the two paragraphs, but I figured, I'd give you an idea of what goes on. This will also give me an idea on how to work this blog thing too.