Thursday, November 24, 2011

Hospital Stay/PCOS

It's Thanksgiving and I am spending it in the hospital. I have been here since the 20th of November. I have been having thoughts on how I am going to manage the rest of my life this way, and then I got a phone call from one of my doctors. I have been officially diagnosed with Poly Cystic Ovarian Syndrome. It seems that when I am in the middle and toward the end of my menstrual cycle, my body starts to attack itself and hence I end up with cycles of Cyclic Vomiting Syndrome. So now the plan of action is to treat the PCOS in hope that we can start to manage my CVS better. I can have my symptoms reduced to as much as 75% of the time. In my eyes that is not to bad. I am sick monthly and have not been able to work. So hopefully This will help and just maybe I can get back to some type of a normal routine, living again, enjoying the small things in life again. For the first time in a long time, I feel like I have hope....That's a good thing

Monday, October 31, 2011

My New Norm.......

Life as I know it will never be the same but I have a different outlook on life. I cherish the good moments and hope the bad ones will pass before I have a chance to notice. Trying to stay positive and looking forward to putting it all to rest.
Since my last post, which was a long time ago, I have started taking CO-Q10 and Vitamin D. Is it working, I don't know but I am giving it a try. Only time will tell.....Until next time.

Linda

Monday, July 18, 2011

Summer Time

I know I need to start blogging more often, but things get so hectic that by the end of the day I'm exhausted and have no energy to turn on the computer.
Well let me just tell you a little about what's been going on with me lately. I took a three hour drive up to Pennsylvania to take my kids to camp, and of course half way through the ride up there the motion of the car going up and down the mountains triggered an attacked. Even with the patch behind my ear, I still managed to get sick.
I don't seem to be getting sick quit as often these days except for the days when I have plans. Go figure it's a catch 22. On the day of my friends fourth of July BBQ, I was sick as a dog all day, ended up in the emergency and when I got out I almost convinced myself that I felt better and I could go. I got dressed and all, until i looked in the mirror and realized that I look green. I am still trying to learn my triggers and to know when to seek the appropriate help. That's the key in all this, asking for help while not trying to burden anyone else. I am just glad that at least two of my kids are away enjoying themselves in the summer fun and not have to worry about mommy being sick. That was my goal to get my kids some sort of peace, and I did it. I love my boys. xoxoxo

Thursday, June 2, 2011

Never Ending

Never Ending...... What can I say about that, this syndrome is never ending. There is no end in sight. Just when I think I am feeling better, it starts all over again. This syndrome has seem to take a life of it's own. My kids, my relationships, the way I deal with everyday life has been affected. I am cranky, moody, and down right depressed. I am a lot more depressed than I originally thought. I don't like to go out anymore, and stay in the confines of my room. I use to enjoy going out and sitting in the sun, now the sun is too much for me to take. I am only 38 years old and have been dealing with this for over a year now. What in gods green earth is life going to be like for me during the next 25 years? I don't want to know. My quality of life is shot. I have none. Most of my friends seemed to have distanced themselves from me or just act like nothing is wrong with me. I guess if you pretend like nothing is wrong, you might actually believe it. Not the case. This is my life, the rest of my life.

Linda

Friday, May 27, 2011

Insomnia

It's 2:30 in the morning and I can't seem to sleep for more than 20 min at a time.Today was an okay day. I only threw up once, dusted myself off and went about day. I try distraction, sometimes it works, other I am completely bedridden. People look at me and say you look great. What they don't understand is how sick I am inside, people ask and I try to explain the syndrome as best I can. I get the same answer, each and every time. It's so frustrating, because it's something thats not visible.
I thought having kids was hard, but living with this disorder takes the cake. I try to smile, I try to stay positive, but I never know when I will be sick or how long it will last. I just wish I felt well. It's so depressing at times. My friends and family see the day to day struggles I have, but they don't know what's really going on inside. Besides feeling sick, at times I feel mentally broken.

Monday, May 23, 2011

It's been some time since my last post. I wish I could say it was because I have been feeling so great that I have no time to blog. But that hasn't been the  case.
Since my last post I have been to the Emergency room twice and one overnight stay. I hate going to the hospital and getting poked. I just hate being there, period.
I have started to identify some signs that a CVS episode is coming on. I tend to get extremely tired, cold, and just an overall feeling like I am going to get sick.
I love it when I feel well, I'm active. I cook more often, clean everyday, laundry doesn't get backed up. Everyone is happy, but it is always short lived. I know that lurking around the corner is another cycle of unrelenting nausea and vomiting. This illness has affected my life on so many different levels. I am trying to do my best as a parent, but kids don't often see it that way.
I managed to get a little reprieve and went on a 10 day cruise. It was fantastic except for the kids torturing us. All in all, it was a good time. I did get sick on the cruise, but it was minimal. Stress is definitely a factor and being on vacation, helped me put all my worries behind.
Until next time........

                     Linda

Sunday, March 27, 2011

Hospital Stay

So it's been some time since my last post. I would like to say it's because I have been feeling well. I wish that were the case. I have since seen a doctor who specializes in CVS and was told to chew my food more slowly so that it would be just about liquid by the time it entered my stomach. Not the answer I was looking for. I am now in the hospital and have been here for some six days or so and now the doctors are telling me I don't fit the profile of typical CVS patient and maybe it is all psychosamatic. How's that for a kick in the stomach. Feeling as sick as I do, is all in my head. Instead of trying to find out what is wrong with me they keep sending in psychiatrists to evaluate me. I feel like I am living in a dream. This has to be a dream, because it is way to inhumane for doctors to treat patients. It's so sad to say that my doctors tell me it;s in my head and all they can do is manage my symptoms. This is what I have to look foward to for the rest of my life. Sounds fun doesn't it. Who wouldn't envy me, not me!

Friday, February 25, 2011

Feeling Good

It's been sometime since my last post, but I was feeling very ill. I think it had to have been one of my worst attacks, but I am happy to report that the storm has past for now.
I have been feeling well for almost five days now. I think part of it has to do with my oldest child going in for knee surgery, and somehow deep inside me my body knows that I have no time to be sick right now. I have been running around like a chicken without a head since my son had his surgery. I must say though, it feels good to be able to take care of my son. I was so afraid I was going to be sick. It's funny how the tables have turned, lol. Now my job is to stay well long enough till my son gets better and hopefully start to really get myself feeling really healthy again.

Monday, February 14, 2011

Valentines Day

I should be full of smiles know that I have a man who will stick by my side through thick and thin but at the moment I'm not. He wants to take me out to dinner tonight and I feel it would just be a waste. I am only going to eat two bites and puke it all up. who wants a girl like that? I wouldn't.
Valentines Day is supposed to be filled with love in the air. Instead I feel like I have been taken over from some demon inside me that won't go away. I can only cry about the way I feel when the kids are not around, I don't want to upset them more than they all already are.  I know that there are other sufferers but not as many as people think and I can not imagine growing old and living this way the rest of my life. There has to be a miracle somewhere.

Saturday, February 12, 2011

More Accupuncture and Woes

So today I am going for another treatment. This will be my third one. I was feeling well initially, but this past week was not one of my best weeks. I was very nauseous and threw up a few times. I went back to see my Gastroenterologist and lost an additional 7lbs since my last visit 4 weeks ago. If I keep going at this rate, there will be nothing left of me. I am so frustrated with this whole disorder. I wish I could just shake it out of me and make it go away for good. I guess I should be thankful it's not worse, and I am not bed ridden. Well I am bed ridden half the time. All I do is lay in bed all day long and feel like a truck has just finished running over my stomach. Sometimes the vomiting is so bad, I look like freckle face from all the broken blood popping all over my face. Let's not forget how my family seems to be falling apart around me. How much more of this am I really supposed to take. I am not gonna take it with out a fight. I will fight for myself and I will fight for my family by any means possible. Even in my darkest moments like now I will still fight.

Monday, February 7, 2011

Always Something

I had gone to the doctor last week and they ran a series of blood work. Well on top of everything I have a severe case of Vitamin D deficiency. The doctor is blaming it on all the throwing up I have been doing. Well at least it gives me a good reason to go on vacation and lay out in the sun.

Acupuncture

I know it has been some time since my last post, but I have had a few ups and downs. I am glad to say mostly ups. My mother has been driving herself crazy thinking that she is going to find a cure for me. She does not seem to understand that that there is no cure, only treatment to relieve the symptoms. She even had me call the Mayo clinic in Jacksonville Florida to see if they could help me, but upon further investigation they didn't know know anymore about Cyclic Vomiting Syndrome than my own primary care physician. Heck, that would have been a real waste of money.
Well one day while I was at the orthopaedic office with my son, my mother asked if they had an acupuncturist. I made an appointment for the following week. Since last week, I have had two treatments, and I am not totally convinced that the acupuncture is making me feel better, but I do feel better. I have only gotten sick twice in the past two weeks, as opposed every other day. Who knows maybe this will work, maybe this is what I needed. Whatever it is, I am willing to try. I might be skeptical, but i am still willing to try alternative methods.

Thursday, January 27, 2011

Snow Day

Today we got about 18 inches of snow here in the tri state area. Luckily I woke up feeling well today. Just a little queasy, but overall pretty good. Kids stayed home from school, and my youngest built an igloo out of a pile of snow. It was nice to get out and enjoy some fresh air. I could have done without the shoveling part. I still feel blue here and there, wondering when the next bout of nausea and vomiting will begin. It seems just when I am starting to feel normal, it hits me all over again. Do I accept my life the way it is, or keep pushing on?
Here are some pictures of the days events.....




Tuesday, January 25, 2011

Never Ending

It's so discouraging to think that this is the rest of my life. Some people say, at least you don't have cancer. Well, I don't think it's a walk in the park throwing up almost everyday and being nauseaus almost every second of every day. Just when I think I just might be feeling better, I wake up in the middle of the night to run to the bathroom and just barely make it. My quality of life has deteriorated, I have no energy, I lay in bed all day long, etc....... Enough said

Friday, January 21, 2011

Feeling Blue

I woke up early this morning and felt great at first, but after an hour or so nausea started to set in. It's days like this where I feel like my quality of life is being compromised. I hate to think that this is the way the rest of my life is going to be. I'm tired of taking anti nausea medications all day long, sleeping with a pale by my bedside, and walking around with plastic bags!!! Who the hell wants to live like that? NOT ME! I don't wish this on my worst enemy. Someone tell me that it will get better.

Thursday, January 20, 2011

The Mall

Hello everyone. Yesterday I decided to go to the mall for a short outing. Well I wish I could say I had such a good time shopping, well I didn't. I was there for two hours and in those two hours, I took four trips to the bathroom to throw up. I was miserable to say the least. By the time I got home all I wanted to do was to crawl into bed and go to sleep. I waited for my mother to arrive to help me with the kids, if not they would've had to take care of themselves. I feel like all my energy is being drained from me. I wonder why I should I take my medicine if it's not helping. I drink water to take my medicine and throw that up. It's like a never ending cycle. I just feel like there has got to be a better way.

Linda

Tuesday, January 18, 2011

My Story

Hi, My name is Linda. I am a 37 yr old single mom of three wonderful boys ages 16, 15, and 10. I am not sure exactly where to begin, I am new to this whole blog thing. I just figured I would share my experience and hope that someone out there knows what I am talking about. Anyway, I guess when I look back and take into account all the times the doctors thought I had gastritis was really this cyclic vomiting syndrome. Part of the problem I was having was, I was seeing to many different doctors. So with some in depth research I found a fantastic doctor. This past September I had a full work up and the my doctor could not find anything wrong with me, they never could find anything wrong with me. They always said it would pass or here try this medicine. It was never really very severe up until this past December. I had extreme nausea and vomiting. I went to work on a Monday, like I normally do, and as the day went on I felt exhausted. I was beyond tired and couldn't wait to get home. I literally slept from the moment i got home to the moment I had to get up for work the next day. Needless to say it was not very easy to take care of my kids while feeling the way I did. Not only was I tired but I was nauseous. Medication wasn't helping, there was no end in sight. I went to work Tuesday, but by the time I got home I had deteriorated so much that I prayed I could just make it home. That night things took a turn for the worse. I starting vomiting uncontrollably so much so that it just would not stop. I finally went to the emergency room the next morning. I was admitted later on that day for dehydration. Before I was released from the hospital I had a full work up again and again the doctors could not find anything wrong and came to the conclusion that I had this disorder. Once I learned about this, I did a little research and realized that I fit the profile.  I called my sister who lives in Arkansas to tell her about it and she told me she had been diagnosed with the same thing a few years ago. I wonder could there be a genetic link? It's been a month since I was diagnosed and have lost over 20lbs. Not the way to lose weight...I have good days and bad days. These days it's mostly bad, I walk around with Zofran to control the nausea. I've still yet to regain all my strength back, but everyday is a different day. If it wasn't for my persistence I don't know if I would have been correctly diagnosed at all. I will say this. I still haven't gotten all my energy back yet. I am starting to work around this illness. I carry plastic bags on me just in case I get sick while I am out. On my good days, I get up and take advantage of my time and when I need my rest and feel sick, I rest. I have wonderful mother who has stood by my side through all this and loving me unconditionally. Let's not forget the three most important men in my life, my boys. They are the ones who give me the strength to keep going.

I just want to explain a little about Cyclic Vomiting Syndrome is for the people who don't know to much about it.
There is the phase where there are no symptoms.
Then there is the phase here nausea and vomiting begin. It can last anywhere from minutes to days, most people usually are not able to tolerate food, liquids, medications and other things by mouth. Most people are usually pale, tired, and just exhausted from all the vomiting has taken on his/her body. Some people end up in the emergency room, even hospitalized due to the lack of fluids. Medications usually need to be given intravenously to control the vomiting.
Recovery phase is when nausea and vomiting usually stop, a person may slowly starts to get there appetite back, and energy slowly returns within a few weeks.

Since there is no specific test for Cyclic Vomiting Syndrome and no known origin, it is usually very hard to diagnose. Once all diagnostic testing for all other intestinal disorders have been done and excluded can a doctor come to a conclusion of Cyclic Vomiting Syndrome.

I have read and come across many different links. Below are just a few that I have found to be helpful;
http://www.cvsaonline.org/
digestive.niddk.nih.gov/ddiseases/pubs/cvs
ghr.nlm.nih.gov/condition/cyclic-vomiting-syndrome

I was in the dark about all of this in the beginning and I am just hoping that my story and the information I have provided has helped. I look forward to your feedback and storied and gaining more knowledge myself. I will be updating daily. I hope to hear from you soon :)