Monday, February 25, 2013

Story Time: Surgery

In my life, the Holy Spirit has guided me so much, and I don’t know where I would be without that help. A huge experience I had where the Holy Spirit was unmistakably part of the answer happened just last year. 

 So for having spina bifida, I have it so easy compared to most, but unfortunately, my nerves were still affected and so I deal with multiple symptoms every day. As I got older some of my issues started to get worse and doctors never really had a good answer for me. I started taking medicine that would incapacitate me for an entire day, but I had to take it in order to live the rest of the days of the week. I lived like this for 7 to 8 years, always living a 6 day week or even a 5 day week. I missed out on a ridiculous amount of holidays and trips and going to school, and it was not fun. At all. 

5 months before I met my husband, my body decided to not let that medicine work anymore and my body pretty much shut down on me. I had to drop out of college on medical leave for a year and a half it was so bad. I eventually found out that on top of my spina bifida problems, I can’t eat gluten, dairy, eggs, or yeast. It was ridiculous how HARD it was to eat "kosher", but finally being strong enough and being strict about my diet paid off, and I luckily started to feel a little better. It wasn’t much better, but it was enough to find my husband and make it work to actually go on dates with him and to do the courting process. That too is a huge prompting of the Holy Spirit, because at the time when I met him, I had no desire to try and date a guy because I was so focused on just living, but I was drawn to him so I decided to see what happened. 

After slowly bringing up piece-by-piece of my medical history, he didn’t run away so we were able to get married for time and all eternity on April 22, 2011 in the Mesa Temple. It was one of the best days of my life, but even then I was not doing well health wise at all. Luckily Tommy dealt with me so well, but my health started to decline more, and it just got worse and worse. So by December 2011, I was feeling quite down and depressed. 

One day in early December, my mom called me up and told me that an invitation to the annual Christmas Spina Bifida party came and she felt like maybe I should go. We always got invited but have never been to one before, especially since almost all of the attendees are kids and are going to be doing kid activities. I listened to her prompting though and decided to go to see if anyone knew any answers I didn’t about my symptoms I was dealing with. 

Tommy and I went not knowing a single soul, and sat down at a random table. The people were really nice, but there were no new answers for me there. I started to feel discouraged when Tommy told me to just stand up and walk around. I felt really stupid, but in a crowd of 500 people we stood up and just started walking. The auditorium was bigger than the size of a basketball gym, and we ended up walking from one side almost to the entire other side. I had no idea where I was going but I literally felt like my feet knew where to go, and so I just followed them. I never heard a voice telling me to stop, but I just knew instantly when I came upon a certain family to stop and talk to them. 
If knowing to stop and talk to this family wasn't miracle enough, within literally two minutes of chatting, the mom said that her daughter dealt with a lot of the same issues and she had a surgery for it and it changed her life. 
That moment, which was made possible through the promptings of the Holy Spirit, changed my life for ever. 
Talking to a random stranger gave me the name of the obscure surgery and the name of the doctor who wasn’t even in the field of medicine I needed help in, who performed it. 
This wonderful family helped guide me in what I needed to do to get this surgery done, and in May of 2012 I was able to get the surgery that I needed performed, and it has and will forever change my life.
 I will still have spina bifida until the day I die, but because the Holy Ghost lead me to a kind stranger, my life will be so much easier to deal with.
Yay for spiritual promptings!!!
My mother in law and sister law were nice enough to visit me in the hospital :)

Tuesday, September 25, 2012

What the heck is gluten?

Ooey gooey cinnamon rolls. Cheesy thick crust pizza. Fried chicken. Toothpaste. Salad dressings. Licorice. What do all of these have in common? 

The little devil I like to call gluten. (didn't even know what gluten was! It is the protein found in wheat, aka, it is in everything that flour is in, and is even added as a thickener in random stuff)

I can't have gluten, or dairy, or eggs, or sesame, or mushrooms, or cranberry, or I can't remember what else at the moment. But pretty much anything yummy I can't have it. I was talking to the hubs and we were discussing how I have been cheating way too much lately and have been feeling kind of really horrible. Go figure. Who knew eating something you shouldn't eat makes you feel sick? You would think I would have gotten that memo sooner. Work brain work. 

So anyways, we also discussed how I am a very motivated person, when I want to be. And when I don't want to be, I'm not. at all. Well needless to say, I can't seem to motivate myself to eat like I should so I can feel pleasant. I decided to come up with a plan. Maybe I would be motivated if I had to "air my dirty laundy" so to speak. Everyone always asks me with wide googly eyes, "What do you even eat?!" after I tell them my dietary restrictions, so it might be interesting to see what a gluten/dairy free lady eats? Maybe not, but I am going to do it anyways. I thought I would start off with the story though. 

As I look back on my life, I can totally see how I have had a gluten/dairy problem for AWHILE but I just had no idea. For example, when I was going to highschool, my "healthy" meals and snacks consisted of honey-wheat pretzels, whole wheat bagel sandwiches with cream cheese, cottage cheese, whole wheat get my gist. I never felt great, or even good at all, but always just chalked it up to my spina bifida. Actually, in 9th grade I brought up this brilliant idea to my doctor to just drink juice and slim fasts to maybe ease my body of some of the pain. He looked at me and in a very stern voice said "Don't you EVER do that. You have spina bifida. It doesn't matter if you have a slice of pizza or a slice fruit because your problems come from spina bifida". Looking back at that comment, he was probably scared I would develop an eating disorder, but I still kind of feel like going back to him and punching him in the face and taking back all the money my parents spent on his stupid advice. But he was right, BARELY. There are certain issues spina bifida kids have to face for their whole lives because of the defect, and I definitely deal with all that, on top of all this food craziness. Most spina bifida people don't have gluten or dairy intolerances. Unfortunately I am the exception. 

Fast forward to March 2010, my freshman year of college. I was gradually feeling worse and worse as my freshman year went on but I was used to not feeling well and dealing with it. Then in the beginning of March, I started throwing up, and it didn't stop. Literally. I ate pizza, didn't stay down. I drank water, didn't stay down. I ate a grape, didn't stay down. I started keeping a tally to give to the doctors and I would throw up on average 15 times a day, up to 20 times a day. If I drove, I had to have a couple cups in the car for when I wasn't at a stop light and could just open my door. If I sat and watched TV I had to have a bowl next to me. One time I wasn't driving so they had to pull over for me, and a cop stopped and came up to me thinking I was drunk as I was puking on the side of the road. That was definitely a low point. So pretty much, I was a mess. a disaster more like it. I had no idea what was going on, and the doctors didn't either. I didn't have any accompanying nausea so naturally they thought I had an eating disorder. They tested me for a brain tumor on a certain part of my brain that would control gag reflexes, they scoped me a couple times, they tested my gallbladder, they tested I don't even know what else. But pretty much everything. And all my tests came up completely normal. They really thought I had an eating disorder then so they put me on some anti-depressant because they thought it was all in my mind or some mumbo jumbo like that? All the anti-depressant did was make me sleep for 12+ hours a day. oh and make me even more not happy. Why do they call it an anti-depressant when it actually makes a lot of people more depressed? That was a tangent, so anyways, while all these tests were showing nothing, I became desperate. I took the anti-depressant crap in the first place because I got to the point where I didn't care what was wrong with me, I just wanted to be fixed. I would have totally been "happy" (way too strong of a word) if I truly had an eating disorder because then we could work on fixing it. I was probably on the road to creating an eating disorder for myself because I would go from the extreme of not eating if I had to be somewhere to the extreme of eating whatever I wanted because I knew I would throw up anyways. I was getting stuck in a rut. But luckily, I was told about a naturopathic doctor and started that route. Hallelujah for that! I would get IV's of nutrients every week so I could even get out of my bed, and they did a blood test for any food allergies. Ding ding ding that was the winner. I went from one day eating whatever I wanted to the next day having a whole list of foods I couldn't and probably never eat again (well unless of course I cheated haha). It may sound silly, and it really is because food should just be fuel, but that was probably one of the hardest days of my life. I am a "foodie" and LOVE food and all the different flavors combining in my mouth, and all of a sudden I couldn't have any of it. It was a slow, agonizing road that I am not and will not ever be done with (because I love food so much and will always be tempted) but I have been able to find some things that I do enjoy, and are kosher! (kosher for me, I have been known to have pork every once in a while) 

Next post will be some recipes and for anyone curious, what a gluten/dairy free person eats every day :) Hopefully this will motivate me to stick to my dietary plan! Let's see how this goes...

Sunday, August 26, 2012

A Smidgen of Religion

It is Sunday night at 11:15, the perfect time to blog? Sleep would probably be better, but blog it is. I felt like sharing an experience I had a few years ago.

So, I went to hair school and loved it. I love doing hair, and I actually really loved getting to know cool girls from other religions. Being a Mormon from Mesa, Arizona, I kind of was in a mormon bubble, which was great, but it was refreshing to hop out of the bubble for four hours a day at school. Religion came up a lot, and I was interested in hearing their views, just like they were interested in my weird church :) A question I got repeatedly, No drinking... EVER?!

Anyways, so one day I was talking to a girl and religion came up. I don't know how we got on this subject, but she was talking about if a God really even existed. She brought up my medical problems, and said something like, "I don't think I believe in a God because there is so much bad in the world. How would a God allow that to happen? Take you for example, why would a God love you, but let you be so sick and have to deal with so much?"

As I thought about it, my heart tightened up in my chest and I got that drowning feeling. There is no way in the world, that I could live, not believing in a God. I am NOT just a random genetic mutation. I am NOT just a fluke, an accident, a mistake, a burden. (well, burden, yes, but some of that has to do with my stubborn side, not just my expensive medical bills) ;).

I was put on this Earth with this crummy body for a reason. It is hopefully the biggest trial I will have to face, but I am not just doomed. Thinking of being a person who doesn't believe in God, I could see why some people would be so depressed! Life would seem somewhat worthless, especially for someone like me who can't live a life they really want to.

Luckily I have sunshine, not drowning doom in my thoughts. Instead of being a forgotten corpse, I will gain a perfect body when I die. Perfect! I will get to finally know what it feels like to have a functioning body, and I will be blessed for enduring to the end. That's my goal at least, to endure to the end :) Instead of spina bifida turning me into a forlorn, depressed creature, I am trying to turn it into a positive. Trying being the key word. Because of my medical conditions, I am more empathetic to people with issues because I know what issues feel like. I may not have the same issues, but issues are issues, and I know pain. I still take things for granted alllllllll the time, but I sometimes can appreciate the good just that much more because it is so different than the opposite I have felt. Making lemonade is much better than sucking on sour lemons.

I am going to deal with the life given to me to gain an eternal reward in the end. God exists, and even in the crummiest of crummy times he is there, even if you can't tell. It is so much easier to write like this, because my health has taken a turn for the better, but it is still possible to know you are loved and cared about by a heavenly being who wants the best for you and can't wait to be with you again even when the darkness seems to have you surrounded. Be a better person than me and figure this out during the trials not after ;)

Sunday, August 12, 2012

Miracles from Day 1: I CAN WALK

I can't believe I am actually doing a blog. People have kept telling me to start a blog, but I just kept brushing it aside. Best part, I got an instagram and a blog in the same week! What is happening to me? Here I am on a Sunday night, and I had a quick inspiration to start a blog, so I am doing it before logic kicks in telling me not to. One reason I have never wanted to delve into blogging is because I don't really like sharing certain details of my life. And unfortunately those details take up most of my life. I am getting better at not caring what other people think though, and hopefully one person can benefit from me opening up and sharing hard things to talk about. If only ONE person can benefit from this, then my mission is accomplished. Don't worry, not all of my posts will be serious...but I am going to write about whatever I want to write about. I can do that on my own blog right?

And tonight I want to write about my birth.

On Sundays I try and focus on all the countless blessings in my life, and I can never forget the blessings that let me be here on this earth in the condition that I am in.

I'm being brave and diving right in.

I was born with a neurological tube defect called spina bifida.

(side note: anyone reading this that is a girl who wants to have kids someday, or knows a girl that wants to have kids someday -hopefully that's everyone- make sure you all know to TAKE FOLIC ACID!!!!!!! So your kids have a better chance not having this debilitating birth defect)

Most people born with spina bifida are paralyzed from the waist down. Most have a condition called hydrocephalus where cerebral spinal fluid leaks. Most have to have a shunt in their head to stop csf from leaking. Many have learning disabilities. Many have to wear huge braces on their feet and legs if they can walk at all. The list goes on and on of unpleasantness.

I don't have any of that. My story is quite bizarre because I don't have many of the symptoms that come along with the birth defect I have. See what I mean by Miracles from Day One?

While I was in the womb my parents found out about my condition. Luckily, my mom was too far along in the pregnancy to have me aborted, and even more luckily, because of our religion, abortion wasn't even an option. Supposedly the nurse gave them the news that it was too late to abort like it was bad news. So glad she wasn't my momma... The doctors weren't 100% certain I would be paralyzed, but they were like 99% sure. I had a cyst growing on my back and it was filled with all my nerves and other essential things that should have been in my body. When I was born I was a whopping 12 pounds!!!! 10 of it was me, the other 2 was the cyst. It looked like I had a huge brain thing attached to my lower back. I was born at the teaching hospital at UCLA where there were the best medical doctors at the time. Right away I was whisked away to a 6 hour surgery to try and put the jumbled nerves back in my body. I don't know if this occurred before or after that surgery, but the way to tell if a child is paralyzed or not is to tickle their toes. If they move, the baby isn't paralyzed. So the nurse took my 12 pound self into her arms and let my dad tickle my toes. Guess what? They moved. BLESSING NUMBER ONE. Actually blessing number 999, because I wasn't aborted, I was actually born alive, my nerves were encapsulated in a cyst instead of spilling out of me, most of my spinal cord formed, the cyst was lower on my back (higher it is the worse it is) yatta yatta yatta. I also wasn't born with hydrocephalus. I didn't have to get a shunt in my brain. I only had to wear little shoe insert braces growing up. I could walk.


People don't realize just how much they take that for granted. I take it for granted every single day of my life.
Even though I was spared so many hardships, spina bifida has affected, does affect, and will affect every moment of every day until the day I die. There have been more times than I want to think about, where I have been down in the dumps thinking about poor me. Why did this have to happen to me, why can't I just be normal, I don't want to be sick anymore, I want to be able to do what everyone else can...the list goes on and on. Sometimes when I am at my lowest points, this random phrase will pop in my head, I CAN WALK. No matter how sick I am, I can walk. No matter how big of a pity party I am throwing myself, I can walk. And for those of you who can't walk, you're alive.

Life is hard. Life is not easy. If we want to, there is always something negative to focus on, but the key is focusing on the numberless blessings that are given to us every second of every day. Yes, I have to always worry about health insurance because the doctors office is like my second home, yes, I am sick a lot, yes, I can't do some things that other people can do, BUT I am beyond blessed. I am alive, married to a wonderful man who somehow manages to deal with me, blessed with wonderful friends, part of a family who loves me for me, and did I mention I can walk?

I know this is so much easier said than done, but seriously, if you take a second to think about your life, even with all of the trials and hardships, Heavenly Father (God) is blessing you beyond measure. On days I forget that, which there will be plenty, I only have to think of the simple phrase, I CAN WALK.