tanja's CVS Story
As I'm in an episode of Cyclic Vomiting Syndrome right now and want to share my story for #CYCLICVOMITINGSYNDROMEAWARENESS
PLEASE SHARE THIS STORY AS MANY OTHERS! WE ALL HOPING TO GET A CURE ONE DAY!
I'm Tanja Durgin born 1976 many also know me as Ziegler, which is my Maiden name. I came to the USA at 1998 from Germany as a child I was never sick. Leaved a normal life there in Germany. I meet an awesome guy back in Germany who is now my husband, could not have meet a better person. We also have 2 very Beautiful smart intelligent Daughters who were born 1996 and 1998, all 3 of them is what I live life for there the best thing that ever happened to me.
I'd like to now skip a few years, my life was normal a very outgoing and fun healthy Person ready to do anything I ever wanted to do, until one day I had to have a surgery hysterectomy January of 2014 is when everything changed. Just 4 days after this full hysterectomy I started getting sick, out of nowhere. Started not feeling well getting sick throwing up getting very bad diarrhea stomach pains that where uncontrollable, it would last bout 3 days at the beginning and I would get sick like this every 2 weeks. So, we went to see doctor after doctor, but no one could figure out why this was happening, then they checked my Gallbladder which was not working at all it did not fill up in the hydro scan, so same year 2014 I believe April they then took it out. A month later I had a bowl obstruction, they said let's get you in for surgery. Not long after they did that my appendix which was messing up. It was 8mm big so they did an emergency surgery that night. Yet nothing helped, I was still getting sick and now the episodes lasted up to 6 or 7 days. I would not be able to eat or drink, I had so much pain in my stomach and I was nauseous all the time no matter what I did. I had diarrhea was vomiting bile which burned and hurt so much, and migraines sweating and freezing. I was burning up while there was none but yellow bile once again, so finely after 8 months and many ER visits they had me going to my first GI doctor who didn't understand right away why I was getting sick so much.
At this point I was just begging for answers for help. After a few more visits with my GI they run a camera down my stomach and much more testing, still no Answers. The month went by and finely my doctor said and diagnosed me with CVS aka cyclic vomiting syndrome. I was happy to know it was something that we should be able to fix, then he said there was no cure all we can do is treat the symptoms. Then I was very upset, knowing there was no fixing this. So, my episodes would go from a week to two weeks long but now every 2 or 3 months. My GI told me he was retiring so I would have to find a new one, it took a while before I could get in with a new GI.
When I did find a new GI he told me first it’s not CVS, it was all my medicine I was taking. After downgrading on my medications, I was still sick, more and more ER visits and Hospital stays IV meds and again so much discomfort. I then went back to the GI and he finely also said it was CVS, after a few tests. But I kept getting more and more unwell it started now to bother me almost every day and this GI didn't do too much about it. I went and got another opinion from another GI. While I had this new Dr, I was again hospitalized and this time they had to put in a picc line because I could not keep anything down at all. My vanes started getting very bad to the point where I had to have any IV placed with an ultrasound machine.
I was very emotional while I had these episodes, and still am. The hospital tried to tell me I was a drug seeker, that upset me so I choose to fight it at home. These days I don't go to the hospital unless I really must. My GI then said there was a specialist for CVS in St. Louis MO, it usually takes a year to get there but he got me in to see him in a month. Now this was already August of 2016, I did go see this guy and he right away said CVS, although I was still hoping it would be something ales that was fixable, but of course not.
So today as I'm writing this September 26th 2016 it has been a month and a half since I've seen this GI the first time, he had put me on a migraine blocker, Adavin and nausea medicine. The migraine blocker has worked for most part, but I have known this my CVS is slowly showing up more again. So, I would call him to see if they could help me maybe give me a higher doze, but I got told let's wait a bit longer. CVS Is a monster of an illness when you look at me you would not be able to tell, even when I'm around people I try to be strong like nothing is wrong. It becomes super hard, there is so many triggers I must watch out not to trigger CVS. I used to drink alcohol 3 years ago but I don't drink at all now, Coffee I love my coffee and I can only maybe have 1 or 2 cups a month, milk messes with my stomach at times, eating at night can't do much at all, and it's very hard Because I am always up late since I can't sleep, stress good or bad is a huge trigger for me and weather if it's too hot or the weather changes, also sinus problems witch I have a lot off.
CVS has changed my life so much and at times I just think ok I'll just try to act like I don't have this illness and do as I please. That is not an option to do so, CVS reminds me it's there just about every day, road trips I can't do on my own I had planned one and next day I woke up so sickly, I had to cancel the trip. Loosing hope and friends over this illness has happened. A lot people do not understand what one goes through having CVS, insomnia and depression is important when I have CVS I always had some of both but now it has gotten so much worse. I can't get super happy in other words super excited, or super sad mad. It will set this illness of. Every step I take I must watch so I don't do the wrong thing because I don't want to have a CVS flare up or a whole episode! I barley talk to anyone bout this Because I have gotten told don't let it run your life and other mean things. Us who have CVS understand but others just don't. It hurts so much feeling sick all the time Because all you can talk about is how you feel.
One thing I love is we have online support groups, I even run one myself. I have met so many great warriors just like me and that is about the only people I speak to bout CVS anymore and then I at times don't even do that Because it's just the same thing repeatedly. I like to support people myself and if I can't do so I don't talk too much to others Because I feel like I'm a bother. Family my daughters and husband have seen me at my worst and they have been there so much, I would not know what to do without them. But as my husband explains at times he doesn't know what to say anymore he just wishes he could take it from me. I usually hide when I break down or try to at least. Up till today I still have almost daily nausea and small flare ups I would call them. Then my big Episodes every 2 to 3 months they can last from 4 days my longest has been 3 weeks!!
I really hope one day they will find a cure we have so many Cyclic Vomiting Syndrome brothers and sisters that we have lost, I pray every day for us all to get healed and get a cure give us all our normal life's back!
PLEASE SHARE THIS STORY AS MANY OTHERS! WE ALL HOPING TO GET A CURE ONE DAY!
I'm Tanja Durgin born 1976 many also know me as Ziegler, which is my Maiden name. I came to the USA at 1998 from Germany as a child I was never sick. Leaved a normal life there in Germany. I meet an awesome guy back in Germany who is now my husband, could not have meet a better person. We also have 2 very Beautiful smart intelligent Daughters who were born 1996 and 1998, all 3 of them is what I live life for there the best thing that ever happened to me.
I'd like to now skip a few years, my life was normal a very outgoing and fun healthy Person ready to do anything I ever wanted to do, until one day I had to have a surgery hysterectomy January of 2014 is when everything changed. Just 4 days after this full hysterectomy I started getting sick, out of nowhere. Started not feeling well getting sick throwing up getting very bad diarrhea stomach pains that where uncontrollable, it would last bout 3 days at the beginning and I would get sick like this every 2 weeks. So, we went to see doctor after doctor, but no one could figure out why this was happening, then they checked my Gallbladder which was not working at all it did not fill up in the hydro scan, so same year 2014 I believe April they then took it out. A month later I had a bowl obstruction, they said let's get you in for surgery. Not long after they did that my appendix which was messing up. It was 8mm big so they did an emergency surgery that night. Yet nothing helped, I was still getting sick and now the episodes lasted up to 6 or 7 days. I would not be able to eat or drink, I had so much pain in my stomach and I was nauseous all the time no matter what I did. I had diarrhea was vomiting bile which burned and hurt so much, and migraines sweating and freezing. I was burning up while there was none but yellow bile once again, so finely after 8 months and many ER visits they had me going to my first GI doctor who didn't understand right away why I was getting sick so much.
At this point I was just begging for answers for help. After a few more visits with my GI they run a camera down my stomach and much more testing, still no Answers. The month went by and finely my doctor said and diagnosed me with CVS aka cyclic vomiting syndrome. I was happy to know it was something that we should be able to fix, then he said there was no cure all we can do is treat the symptoms. Then I was very upset, knowing there was no fixing this. So, my episodes would go from a week to two weeks long but now every 2 or 3 months. My GI told me he was retiring so I would have to find a new one, it took a while before I could get in with a new GI.
When I did find a new GI he told me first it’s not CVS, it was all my medicine I was taking. After downgrading on my medications, I was still sick, more and more ER visits and Hospital stays IV meds and again so much discomfort. I then went back to the GI and he finely also said it was CVS, after a few tests. But I kept getting more and more unwell it started now to bother me almost every day and this GI didn't do too much about it. I went and got another opinion from another GI. While I had this new Dr, I was again hospitalized and this time they had to put in a picc line because I could not keep anything down at all. My vanes started getting very bad to the point where I had to have any IV placed with an ultrasound machine.
I was very emotional while I had these episodes, and still am. The hospital tried to tell me I was a drug seeker, that upset me so I choose to fight it at home. These days I don't go to the hospital unless I really must. My GI then said there was a specialist for CVS in St. Louis MO, it usually takes a year to get there but he got me in to see him in a month. Now this was already August of 2016, I did go see this guy and he right away said CVS, although I was still hoping it would be something ales that was fixable, but of course not.
So today as I'm writing this September 26th 2016 it has been a month and a half since I've seen this GI the first time, he had put me on a migraine blocker, Adavin and nausea medicine. The migraine blocker has worked for most part, but I have known this my CVS is slowly showing up more again. So, I would call him to see if they could help me maybe give me a higher doze, but I got told let's wait a bit longer. CVS Is a monster of an illness when you look at me you would not be able to tell, even when I'm around people I try to be strong like nothing is wrong. It becomes super hard, there is so many triggers I must watch out not to trigger CVS. I used to drink alcohol 3 years ago but I don't drink at all now, Coffee I love my coffee and I can only maybe have 1 or 2 cups a month, milk messes with my stomach at times, eating at night can't do much at all, and it's very hard Because I am always up late since I can't sleep, stress good or bad is a huge trigger for me and weather if it's too hot or the weather changes, also sinus problems witch I have a lot off.
CVS has changed my life so much and at times I just think ok I'll just try to act like I don't have this illness and do as I please. That is not an option to do so, CVS reminds me it's there just about every day, road trips I can't do on my own I had planned one and next day I woke up so sickly, I had to cancel the trip. Loosing hope and friends over this illness has happened. A lot people do not understand what one goes through having CVS, insomnia and depression is important when I have CVS I always had some of both but now it has gotten so much worse. I can't get super happy in other words super excited, or super sad mad. It will set this illness of. Every step I take I must watch so I don't do the wrong thing because I don't want to have a CVS flare up or a whole episode! I barley talk to anyone bout this Because I have gotten told don't let it run your life and other mean things. Us who have CVS understand but others just don't. It hurts so much feeling sick all the time Because all you can talk about is how you feel.
One thing I love is we have online support groups, I even run one myself. I have met so many great warriors just like me and that is about the only people I speak to bout CVS anymore and then I at times don't even do that Because it's just the same thing repeatedly. I like to support people myself and if I can't do so I don't talk too much to others Because I feel like I'm a bother. Family my daughters and husband have seen me at my worst and they have been there so much, I would not know what to do without them. But as my husband explains at times he doesn't know what to say anymore he just wishes he could take it from me. I usually hide when I break down or try to at least. Up till today I still have almost daily nausea and small flare ups I would call them. Then my big Episodes every 2 to 3 months they can last from 4 days my longest has been 3 weeks!!
I really hope one day they will find a cure we have so many Cyclic Vomiting Syndrome brothers and sisters that we have lost, I pray every day for us all to get healed and get a cure give us all our normal life's back!
Click here to SHARE this story on Facebook
