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.
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. :)
