God's Plan

Who would have guessed that a zofran pump would be an answered prayer? Well to someone with CVS and morning/ all day sickness, it definitely is. I still have a little nausea, but they said it will just be adjusting the dosage to what works for me. That is a work in progress, but at least the vomiting is stopping. These baby boys need to grow :)

I have really started to feel the boys move. It is amazing. It makes it start to feel real. Daniel has not got to feel them yet, but it will not be too long before he can. We are getting so excited to meet our little men. We wonder what plans God will have for their little lives. I am beyond excited to be a mother. This pregnancy has been rough to say the least, but the boys are doing good and that is what matters. 

Just a little talk with Jesus can do wonders. It makes me realize my purpose in life is not to make money or anything like that. My purpose is to do the Lord's work. Although I cannot do a lot due to illness, God still provides ways for me to do His work if I am willing.

What in the World Wisconsin

What we found out in Wisconsin is that we cannot do anything right now because of the boys, but there is a lot happening after these little pumpkins come. Actually, I am going to get DNA tested because all my issues could stem from a mitochondrial dysfunction. That basically means that I could pass it on to the boys, if it is caused from that. It is uncommon in men, so hopefully it will not be passed on, if that does end up being the cause of all this crap. I go back in April, and the doctor will start me on some new meds. One of them being a higher dose of amatriptyline. The other will be one that I have never been on before. It is an enzyme. Until the boys are born, she recommended possibly getting a zofran pump, and they are going to work on getting my insurance to cover more zofran. The goal is to slow down the vomiting to maybe once a week or less, if we are lucky. Since I have had to go to the hospital twice for dehydration and once I was having contractions, the doctor is really stressing getting the vomiting to stop. I go see the high risk doctor on Thursday and I will be mentioning a zofran pump and DNA testing. Hopefully, he will be all for it, and we can get these babies here healthy. Then after the boys are born, we will try something to stop everything. I hope that we can find some answers. This trip was a step in the right direction. I also was diagnosed with POTS. Apparently, I had this diagnosis since I was 16, but we were never informed of it. POTS, postural orthostatic tachycardia syndrome, was diagnosed from the tilt table test. Which the doctor said, "You basically failed bad." haha. 

The doctors there were super nice, and for the first time I did not feel stupid. She said that anything that is commonly found with CVS I have. Some people just have CVS, others have CVS and fibromyalgia, and I have EVERYTHING that is associated with CVS. Finally, someone understands that I am not making it up. Well, I am pretty sure that is about it. Time for me to get some shut eye. :)

Haha. Seriously, how I feel sometimes. 

Looks like right now I will be praising Him in the hallway. :)

Just Need to Vent

Okay, so basically the government sucks. I am not afraid to say that I have been fighting for disability. I literally do not understand why some people get it that does not deserve it, but I have like 10 different diagnosis and cannot get it for the life of me. 

I have never been a complainer. Life sucks. That is just the way it is, so why waste the life I have complaining? Well apparently, if you do not complain every 5 minutes about how your life basically sucks then there is no way you are ill. At least that is what disability is saying. I am not one to complain, but let me tell you that I hurt every single day. I feel nauseous every single day. Somedays I do not even know what is going on around me. Somedays I cannot move or sleep or really do anything. I am terrified to drive. I am afraid I might have a seizure, get into an accident, and kill someone. I cannot be the wife that I would love to be. I cannot have the house cleaned and dinner on the table for my husband. I cannot be the mother I would love to be. I am not going to be able to run around with my children all day or even go on field trips with them without being in so much pain or vomiting. I cannot get excited for a vacation or stressed for an appointment. I cannot do "normal" things, but yet apparently all these things that I cannot do not make me disabled. I realize that a lot of people do not see me at my worst. I do that on purpose. I do not want people to see me like that. It is horrible. Why would I want people to see me in that manner? I do not ever want to be "the girl that is sick", but I do want to be "the girl that lives her life the best way that she can with what she is given." Why is that so bad? Why do I get punished because I choose to be thankful that things are not worse? Just because things could be worse does not mean that they are not horrible already. It just means that I choose to count my blessings. It is hard for me not to look at the things I cannot do, but I try not to. If they would live one day in my shoes, I promise you the decision that they made would be different.  Not to mention that they want me to see doctors every week. I cannot afford to pay a $40 copay with every specialist I see. That is completely ridiculous. It is just an ongoing cycle that is never ending. Okay, now that I am done getting all worked up and realizing that life just sucks I guess I will go on and move on. That is what I do. Time to put on a smile and realize it could be worse. God is in control of it all anyway. In His timing, not mine. Just had a weak moment that is all.

I just adjust my sails.

I choose to make myself strong instead of miserable. Why am I punished for that?

Sometimes Blessings Come in Pairs

Well... It has been like 500 years since I have blogged. Obviously, that is over dramatic, but you get my point. A lot has happened since my last post. Daniel and I have bought a house. I feel like a grown up. lol. We moved in on our one year anniversary. I could not think of a better way to be celebrating. What a blessing. Also, we found out that I am PREGNANT! I had always heard that they did not know if I would be able to carry children. Not only am I carrying a baby, but I am feeling good. Actually, I am carrying 2 babies... that is right it is TWINS. Daniel and I are so overwhelmed with blessings. I am only 9 weeks pregnant, but I am already overwhelmed with the two little blessings God has given us. 
So yesterday I got home from Las Vegas. I am coaching a cheerleading squad, and they made it to nationals in Vegas. It was definitely tough on my body. We walked all the time, and I was absolutely exhausted. I had a great time though. It was very neat to see. Our elite team placed 3rd. :) I am a pretty proud coach. 
This road ahead is going to be rough. I wasn't sure how my health was going to be with one baby let alone two. I am so excited to be a mom. I feel like that is what I am supposed to be. Losing school and my jobs really made me feel worthless. I was doing nothing with my life. Now, I am going to be a mom. I am going to be raising two human beings. What a blessing and an accomplishment. When I felt like I was worthless, God provided me with worth. He really knows everything. I am thankful for everything I have been through to get where I am now.

Days in the Hospital

Dadgummit. I hate hospitals. #1 they have horrible food #2 the beds are awful #3 I cannot even pee without someone standing outside the door. Okay, so you can guess that I had to be in the hospital. This time is was for a 48 hour video EEG. So fun.... not. Luckily, I have family that loves me and brought me yummy food, so I did not have to eat the nasty crap the whole time I was there. My whole family comes like I was actually admitted for something bad. I was just having a test done, and you would think I just had surgery or something. My aunts, uncles, and cousins like to take a trip to St. Francis to see me. Here are some nice pictures of my stay.

The lovely seizure pads that had to be put on the railings. Don't want you to get hurt on the plastic side rails. Honestly, the side rails are softer than the mattress. Talk about needing a serious massage. 

Yep, that yellow bracelet. That means I am a fall risk. You know, like the old people on those commercials. "Help! I have fallen, and I can't get up." I wanted so bad to lay on the ground, hit my call light, and say that just like they do on the commercials. I am nice thought. I know my nurses were too busy for a joke like that. It would have been completely hilarious though. You have to admit.

That my dear friends would be the beautiful camera that watched my every move. I also had a mic above my head listening to everything we said. It was awesome... not. It was way creepy.

Oh, those electrodes. Really cute. If you have never had them, count your blessings. When one falls off, it hurts so bad for them to put it back on. My head got so raw. It sucked super bad.

Such a sleepy fella. He has no clue I took this picture. He would be so mad at me. lol. That was his bed for a few nights. It looks more comfy than mine. 

So I may or may not be addicted to this movie. While I was in the hospital, Daniel went home to shower and change clothes everyday while my parents stayed with me. He came back one day with a new phone and Frozen for me. He wins best hubby award forever. You all should be jealous. :)

I have not went and picked up the results of my EEG yet, but as soon as I do, I will let you know what they said. 

Random... but I got my hair cut again. I keep getting shorter and shorter. I am not going any shorter though. I like for people to be able to tell I am a women. :)

Lately, I have been looking at cyclic vomiting syndrome stuff. I joined a support group on Facebook. It is pretty cool. I have always known that I had it, but it is good to know I am not suffering alone.

I have been in a lot of conflict with school lately. I have lost any drive I once had. I have sincerely been praying that God will guide me in what He would have me to do. I want to be a stay at home mom. It is biblical. It is what a women is supposed to do. Everyone thinks I am giving up on a dream, and that is not true. I am pursuing another one. I always dreamt of being able to stay home with my kids. I feel like maybe that is what I am supposed to do. Of course, I am not confident in what I am supposed to do at all. I ask everyone to please say a prayer for me. I want to do what God wants me to do with my life, and it is very hard for me to feel like I do not know what that is. 

Also, I have some tests coming up. I ask everyone to please pray that there will be some answers. I want to get better. I want to have a normal life. I am beyond tired of being sick and not feeling well. I am desperate for answers. Not just on what is wrong with me, but how to fix it. I do not want to be on medication forever. I would rather have surgery and just get it done and over with. I just ask for everyone to pray for me. I am feeling weak and just tired of the fight. 

Pretty much perfect. I am trying to find the right words, but unless you live with it, you will never truly understand. The closest thing I have found to explain it is the spoon theory. 

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Read it. It is long. Sorry, but the idea is good. It is a good way to explain it.

Seriously, every time I read this I literally crack up laughing. If you only knew the looks that I get when I begin to list my medical problems. Hilarious. 

On a much better note... Daniel and I got pre approved for a house :) We are so excited to start this journey together. We are not apartment people that is for sure, and our little beagle puppies need some room to run. God just continues to bless us. He has given Daniel a great job that supports the two of us. It is not always easy, but we make it. I am just so blessed beyond measure. I cannot thank God enough for what He has given to me. I struggle... to say the least, but I would not be able to do what I am capable of doing without the Lord's help. He gives me those good days, and I am thankful for everyone of them. 

There is a lot more to tell you about. There has been a lot going on in my life lately. For now, this is all I got. :)

Living with CVS

Living with CVS... more like not living. I guess I am still breathing most of the time, but I certainly am incapable of having a life. Keep in mind that I have a very severe case of CVS, or cyclic vomiting syndrome.

I was diagnosed when I was 8 years old by Dr. Li in Chicago at a children's research center. When I was diagnosed, Dr. Li explained that there was not a lot of information on CVS yet, and he was unable to tell us what the future would be like. They would learn as it was happening to me. CVS has now been on an episode of Grey's Anatomy, because Dr. Bailey's daughter (her real daughter) suffers from it. She actually requested for it to be put on the show. I thought it was awesome to see a rare disease on there. 

My symptoms are not the same as they were when I was younger. When I was little, I would vomit for hours, and it was only at night. It would cause be to get dehydrated and end up in the hospital. Doctors told my mom that I was doing it for attention since it was only at bedtime. Of course, my mom kept fighting to find the right doctor. I did this for a long time. I am not sure how long I had the episodes before I was diagnosed, but I know that it took a long time. 

I really do not remember much of that time period of my life since I was so sick and completely out of it. I know that I had 3 grand map seizures, and I remember throwing up for hours. I would get so hot from vomiting that I would lay on the bathroom floor since it was cool. I would doze off on the floor for a few short minutes before I would vomit again. I missed so much school in 3rd grade that I do not know how they let me pass. I literally missed over half of the school year. CVS began to take away my life. I spent more time trying to sleep during the day, going to doctors, and getting tests ran than being a student or a kid. Sometimes I think that it is the reason I grew up so fast. I didn't have time to be a kid. I was just trying to stay healthy.

Stress is a huge trigger for my episodes. Positive or negative stress. I cannot get too excited for a vacation. I got sent home from multiple birthday parties, because I had gotten too excited and gotten extremely sick because of it. It was hard not being able to get excited or stressed. I had to learn stress management very young and at times I think it has made me boring. I feel like I cannot get too excited or worry about something because it will only make me sick. I was put on multiple different medications when I was younger. I took seizure meds which seemed to help the best. That was the only treatment I had... well and stress management.

Now my symptoms are very different. I have also been diagnosed with a ton of other stuff.... we will get to that in a little bit. Nausea.... What is life without it? I truly have no clue what it is like to feel "normal" or good. Sometimes I wonder what life would be like to not have to think about taking your meds for the day or knowing that you will not have any issues when having children. There are many things I think about daily. I wonder how life is without CVS. What does it feel like? 

I do not throw up as often anymore. I still have episodes every now and then, but nothing like I used to. Since 8th grade, when I started my period, my symptoms changed. I am constantly nauseous, but I do not really vomit that much anymore (I take zofran like it is my job). I still get over heated and sometimes vomit uncontrollably like I used to it is just like once a month now though... it used to be every night.

I am going to move into my other diagnosis now because they are all linked together.... First off, I have neurocardiogenic syncope. Basically that means that I pass out. To be diagnosed with that I had to have a tilt table test. The worst test of my life and I have had a lot of test. If anyone tells you to get one.... REFUSE. Well it was bad for me because I have a bad case of CVS. During the test they strap you to a table. They insert an IV. They stand you up and see how long it takes you to pass out. If you do not pass out, they lay you down inject something to boost your adrenaline and stand you back up. The process continues until you pass out. Yep, it is as bad as it sounds. The person that did mine said that it was the fastest she had ever seen. She literally stood me up and said "how do you feel?" I said, "okay." She immediately said "How do you feel now?" Then I said, "Oh Crap." Next thing I know I am gagging and feeling extremely nauseous as she is laying me back down. Awful... never again. 

How does this connect to CVS? Well cyclic vomiting syndrome is caused by the overstimulation of the vagus nerve. The vagus nerve is the only cranial nerve that goes past your neck. It goes from your brain around your heart and into the stomach. When it is overstimulating, it tells my stomach to empty and to keep emptying even when there is nothing left to throw up.

I also have severe acid reflux. It causes issues with my teeth. I am constantly having to get them filled and yes I brush at least 2 times a day... I am not nasty. When I vomit, the access acid erodes my teeth. They are white, but I will probably need dentures at age 30. 

I was diagnosed with fibromyalgia when I was 16. Come to find out, they are now doing studies linking CVS to fibromyalgia. I promise I am not a hypochondriac....

I also have seizures. Last week I had a 48 hour video EEG, but I will be posting a different post about that later. Epilepsy or seizures are caused by the under stimulation of the vagus nerve. Are you starting to get the connection of all my problems? My vagus nerve pretty much sucks.

Oh yeah, and I have high blood pressure. Did I mention the nerve goes around my heart? 

CVS still has a huge effect on my life. It has changed everything. It along with my other diagnosis has made me feel like I do not have a life. I cannot work because I do not always sleep at night and lack of sleep cause major issues. I am too unstable to work or go to school. I am having memory loss which I have a neuropsych test for in a couple weeks. I had an MRI done that had some really bad results on them, but we are getting a 4th opinion. One doctor gives me really bad news, another says it isn't that bad, and another says I don't have it at all. What in the world? I am trying to go to Milwaukee to the best specialist in the world for adults with CVS. I need it. I am beginning to get discouraged. Am I ever going to be able to live a life, or am I going to have to take 8-10 pills a day for the rest of my life? I need answers. What ever needs to be done, I want done. I just want to be able to feel normal... whatever that means. 

P.S. I do not know if I forgot anything. It is 3am, so it is possible that there is more that happens. My brain is shutting down though. Time to get some sleep. I am sure there will be more info in future posts, but if you have any questions, comment or message me on Facebook. If you know anyone who has CVS, and they need someone to talk to have them message me. It has been 13 years since I was diagnosed, but I have lived with it longer than that. I know how it feels for no one to understand what you are going through. Feel free to send people my way. 

Here is the cyclic vomiting syndrome association's website. Check it out! It makes me realize I am not alone in this fight.

http://cvsaonline.org

So this is something I have to think of on a hard day. He knows far more than I do. I do not know what he is saving me from or what he is putting in front of me. All I know is what he has given me is not a punishment. He is teaching me something and giving me strength to get through it. His strength is great enough to keep pushing on.

I have been through heck and back with my illness. I have had the worst of times, but I have come a long way. I know that there will be an end to this struggle and without the struggle I would not know success, but I am ready for this battle to be over. I know life could be so much worse and I am so blessed beyond words, but lately I have just been down. I blame the cold weather. My lack of vitamin D has been making me depressed (another symptom of CVS). Time to get over it, move on, and figure out how to conquer it. I will live a normal life. I will learn what normal feels like. I am just not sure when that will happen.

Stand

You know, I have heard over and over again how strong I am. People tell me that they do not know how I keep going with all the hardships that surround me on a day-to-day basis. Well I get my strength from the Lord, but also I have had great examples of strength around me. The women in my family are amazing to say the least. These women have seen a lot of downs, and as I have grown up, I have always seen them just push on. They have taught me that I could sit around and feel bad for myself, or I could take the life I have been given and live it the best that I can. I do not know what I would do without the family that I have. Oh actually I do know what I would do, I will have a pity party and feel bad for myself, but instead I have to keep pushing on, just like they did/do.

I can do something great with my life. I am not feeling sad or upset with my life. I am being realistic. I am accepting what has taken place, and trying to figure out what to do next. I know that I will do great things, because I have the desire to help those around me. I have a love for those around me, and to help in anyway that I can. With that, I know God has great things in store for me. So, I am not sad. I am thankful for the plan God has for me, because I know it is a great one. I feel like a lot of readers feel like I am constantly down. I am actually not. I do have sad moments, but who doesn't? Life is not easy, but I never expected it to be. I know that I have a God that takes care of me. 

I know I posted lyrics to a song last post, but I am going to do it again. I have felt like this is my song forever. I get sad, hit my knees, then I learn to stand (With God's help, of course). The battle I have been given has made me who I am, and I am thankful that God chose me to live it. He only gives you as much as you can handle, and I feel like God knew I would be strong enough to live it. That seems like a compliment to me ;)

"Stand" by Rascal Flatts

You feel like a candle in a hurricane

Just like a picture with a broken frame

Alone and helpless

Like you've lost your fight

But you'll be alright, you'll be alright

Cause when push comes to shove

You taste what you're made of

You might bend, till you break

Cause its all you can take

On your knees you look up

Decide you've had enough

You get mad you get strong

Wipe your hands shake it off

Then you Stand, Then you stand

Life's like a novel

With the end ripped out

The edge of a canyon

With only one way down

Take what you're given before its gone

Start holding on, keep holding on

Cause when push comes to shove

You taste what you're made of

You might bend till you break

Cause it's all you can take

On your knees you look up

Decide you've had enough

You get mad, you get strong

Wipe your hands, shake it off

Then you stand, then you stand

Every time you get up

And get back in the race

One more small piece of you

Starts to fall into place

So basically I wanted to add this picture, because it cracked me up. I do not know why I found it so funny, but I did. Hope it gives you a good laugh :)

Perfection is my Enemy

"Free To Be Me" by Francesca Battistelli

At twenty (one) years of age
I'm still looking for a dream
A war's already waged
For my destiny
But you've already won the battle
And you've got great plans for me
Though I can't always see

'Cause I got a couple dents in my fender
Got a couple rips in my jeans
Try to fit the pieces together
But perfection is my enemy
On my own I'm so clumsy
But on your shoulders I can see
I'm free to be me

When I was just a girl
I thought I had it figured out
My life would turn out right
And I'd make it here somehow
But things don't always come that easy
And sometimes I would doubt

'Cause I got a couple dents in my fender
Got a couple rips in my jeans
Try to fit the pieces together
But perfection is my enemy
On my own I'm so clumsy
But on your shoulders I can see
I'm free to be me

And you're free to be you

Sometimes I believe
That I can do anything
Yet other times I think
I've got nothing good to bring
But you look at my heart and you tell me
That I've got all you seek
And it's easy to believe
Even though

'Cause I got a couple dents in my fender
Got a couple rips in my jeans
Try to fit the pieces together
But perfection is my enemy
On my own I'm so clumsy
But on your shoulders I can see
I'm free to be me

Basically, I feel like this is my life right now. Daniel is totally tired of listening to this song, because I play it over and over again. If you have not heard it, look it up. It is really catchy. Perfection is my enemy... this is something I struggle with a lot. I had a manager tell me that I try too hard to be perfect. I do try, and I feel like that it is my enemy. I do not need to be perfect. I need to focus on what God wants for me. I always would strive for the perfect grades, and then I wanted the perfect career. I wanted to be the perfect wife and the perfect daughter. I wanted to make those around me proud, and when I found out I didn't get into nursing school the first time, I felt like a failure. Then I failed out of nursing school, that really makes me feel like a failure. So much for perfection. I am so far from it. 

"When I was just a girlI thought I had it figured out"

I was wrong. I have no clue what to do with my life.

I try to come off like I know exactly what I am doing with my life, but in all reality, I am clueless and indecisive. One minute I am all for going to school for medical imaging technology, and the next I just want to go to beauty school. So I am going to weigh out the positives and negatives to both.

Medical Imaging Technology

Positives

• I can help kids at Riley
• I think I would enjoy it

Negatives

• I am not really reliable, and I would have to be at work no matter what
• I may have to work weekends
• I would be in school for another 3 years minimum
• More debt

Beauty School

Positives

• I could own my own shop
• I could make my own hours
• If I do not feel well, I can just cancel my appointments for the day
• If my kids are sick, I can cancel my appointments for the day
• I could own a shop with my sister
• I would enjoy it
• I could help kids feel pretty (and adults of course)
• I would have clientele with all my family, church family, and friends
• I would graduate in 10 months, and then I could work
• I always have the option to go back to school later, if I wanted to

Negatives

• The money is not as good
• I would feel like I disappointed people

I have always said that my "plan B" was to go to beauty school. I said that even after graduating nursing school I wanted to go to beauty school. It is something I have always wanted to do, and I think I would be good at it. I love to do hair and makeup. I think I could run a business. I know there is a lot to owning a business, but I really think I could do it. I want to make sure that whatever I do is what the Lord wants me to do, and not what I want to do. When I chose to go to UINDY for nursing, I did not pray for what God wanted me to do. I did what I wanted to do, and now I feel like I am getting a swift kick in the rear and $30,000 in debt because I chose not to ask Him for guidence. Now I do not want to make that mistake again. I want whatever He wants. I am struggling with this. I feel like I am clueless, and I hate that. I just wish I knew exactly what I should do. Ya know? I know God will tell me, but I am impatient. He sure is teaching me patients. I still plan to go to IUPUI and check out the medical imaging technology degree. I just do not really know. I am really trying to search for what God wants from me. Not just in school, but in a home and vehicle and in everything I do. I want His will to be done more than I ever have before. I ask everyone to please say a prayer for Daniel and I that we will listen for God's will in our life. 

I also want everyone to pray for Daniel. He lost someone that was a very good family friend. He is really sad about it, so if you all could pray for him and the family of Mike. 

"Sometimes I believe
That I can do anything
Yet other times I think
I've got nothing good to bring
But you look at my heart and you tell me
That I've got all you seek"

A career seems like everything, but in all reality I've got all He seeks. That is my salvation. That is the only thing that really matters in the end.