Catching Up

It's been awhile since my last post, nine months to be exact. Trust me when I say it's not because I forgot I started blogging but I have been sicker in the last 9 months than I have been in my entire life.  I've come down with C-Diff twice. The first time it nearly killed me, landing me in the ICU for three days. Since then I've been battling with constant stomach pains, nausea, vomiting, and many many trips to the ER. I lost count how many times I've been hospitalized this year. All this has left me feeling very depressed and out of sorts. It's almost as if everyone around me has lost patience with me ending up in the hospital so often. No one hates it more than me. My veins are so bad that sometimes the only place to get an IV is in my neck. The las month or so has been a bit better with the vomiting but not without other problems. How do I learn to enjoy life this way and accept what I have? Maybe I'm a dreamer but I'm still looking for the pot of gold at the end of the rainbow. I'd like for my closest friends and family to understand that I'm not alienating them, I'm just sick.id like my boyfriend to understand that I need him more than he realizes and I count on him to get me through the bad days.. That support is so crucial to me it's priceless. I just wish that he and everyone else around me understood.

What makes all this worth it?

I can't sit here and lie and say that this disease is hunky dory, cause its not. I started this blog as a way of therapy for myself. To have a safe forum for me where I can say what I want!! None of my family reads it anyway.
I want to thank each and everyone of you out there that has taken the time to read it. All I ask is please leave a comment, and I will answer each and every single one. Who knows this could get bigger than I ever imagined. We need to reach people and have people made aware how devastating this illness is.
I spent 8 hours in the ER yesterday throwing up over a dozen times and I'm here this morning reaching out to you. If I can help I will and if I can't, at least I know I tried. 
So all I ask is please pass this blog around, it might make a difference!

Gastric Pacemaker

It has been a very long time since my last posting, and I want to apologize for that. Things have been anything but easy for me these last few months.
I am happy to say that in addition to my CVS diagnosis, I was also diagnosed with gaastroparesis. Now I will always have both disorders but I have found a new treatment. I met a surgeon that my mother found through a health newsletter who is pioneering surgeon placing gastric pacemakers in people with gaastroparesis. Although the device by Medtronic has been around for years, it's not until recently that it has made it's way into the market and not just clinical trials. There is still a process to get approval but patients suffering such as myself have a chance at living a close to normal life.
I underwent the procedure October 18. I am not gonna lie, it was a painful procedure and I have still had a few attacks since the surgery, my symptoms day by day seem to be reducing in frequency and intensity. I hate being sick and I hate getting sick, but knowing that I have a chance at a better quality of life, keeps me going. I have a great support system and a family that loves me.
I live for today and look forward to tomorrow.

What we perceive and how others perceive us are two different things. This past May I had been hospitalized three times. I am going to say the Nursing staff at the hospital where I was admitted took outstanding care of me. I couldn't have been happier with their service and attentiveness. On the flipside, Its always frustrating having a nurse or a doctor that does not understands the disorder.That's not such a bad thing, but in this case when you're in a place getting help for something that is so debilitating, it hurts emotionally when the vibe you are feeling around you is a negative one. Not only are feelings hurt but it may sometimes delay whatever treatment I may seek in the future. Thats not such a good plan for a CVS sufferer. The complications of delaying medical attention can be very serious. While I can not expect anyone who does not know about the disorder to fully understand how I feel, I can only say that the most ignorant person is the one who does not ask questions. Just because someone does not look sick, does not mean they aren't feeling horriband wear nice clothes. I feel if you look good on the outside, it can make whatever horrible feeling you have on the inside a little more tolerable. The worse I look, the worse I feel. Who the heck wants to vomit for days on end, who wants to look like you haven't seen the light of day, not be able to go to work and do normal everyday things; not me. I wish I had a job and mingled with the outside world. Most days are spent either playing catch-up with house chores, or at some doctors appointment. Most of the time, I don't even have energy or I have a headache. It's always something, so I am putting so much hope on a cure. At the same time, I need to be realistic and understand that I may have something that I may have to deal with for the rest of my life. So for every negative that is thrown at me, I am going to find a positive. Linda Hope Starts Here

Trying to stay POSITIVE

So, all I can say is that I have had a good run. I was well for an entire two weeks, which is something that has not happened since last year. I know having a positive attitude is helpful, but even being sick for five minutes seems like an eternity. I am going to the Cyclic Vomiting Syndrome Association Conference at the end of next week and all I can say is no matter what, I am going. I feel I owe it to myself and my family to to try and find answers. I am also heading one of the tables at the conference. It's going to be for Adults living with the syndrome. My hope is to make it to the conference without being ill and learning all that I can.

Everyday Challenges

Living with this disorder poses everyday challenges. My life is not my own, my life is anything but normal. The healthcare profession is not what I imagined it to be. To me it seems unless you are walking around with a big gaping hole in your chest and bleeding profusely, then you aren't sick or don't require immediate medical attention. Unfortunately I am in the middle of another episode, and I am on day number 3. I have been sick on average at twice a week for the past month, and this latest episode being the worst so far. I have been on the emergency since Thursday morning and have not had a thing to eat because of the vomiting, yet I am not sick enough according to the hospital to be admitted. My doctor had to fight for me and tell them he was not sending home a patient who can not hold down food and has not eaten in days. What has the healthcare system come to? Especially for us Cyclic sufferers. Who will fight for me, and the rest of us who suffer from this horrible disorder. Speaking for myself and probably a lot of other sufferers, all we want is to lead a normal life. We want to enjoy life, the sun, wind, stars, and some sense of normalcy when we can. Who will hear our calls. Who will fight our fight? I am not asking for much other than to get treated when I need it and to enjoy my time with my children and loved ones when I am well. I think that's what most of us want. More importantly we want to be treated with respect and dignity, without our sanity being questioned. Last thing I want is to have a psych evaluation to ask me if I am crazy and doing this to myslef. Who in the name of the lord would want to live a life this way. Not me, and that's why I am going to do whatever I can to make people aware and bettter educate others on what this syndrome is and how it's a real disorder people are suffering from. Not something made up in our heads. This is our lives and it's up to us to make the best it. Life is to short, live it to the fullest......... Linda

Maybe there is still Hope

Hope.... Hope is all I have left at this point. Out of a two week period I was sick for more than half of it, so I can only hope that it will only get better. How much worse can it get???? Is this the way my life is supposed to be? I hope not! I'm just having a very blue day. Im hoping that better days are to come, it just doesn't feel that way. I talk so much about hope, yet I am very weary of it. At my last doctors visit with my new gastrointerologist yesterday and he mentioned a port and home care with iv therapy twice a week. This is what my life has come too. At age 39 I am practically home bound because I vomit! People aske me what I do for a living and I would like to say I vomit, but that's being mean. Well maybe I'll be in a better mood tomorrow. At least I hope I will. Linda

And the Saga continues........

I realize it has been 4-5 months since my last posting, but there have been many changes and a lot of soul searching. I realize by now that my life will never be normal, it's everything else other than normal. Last november I was diagnosed with poly cystic ovarian syndrome, and after doing some reasearch I found out that there is a correlation between PCOS and Cyclic Vomiting Syndrome. It was the beginning of January when I went to see my gynnecologist and went over my hystory. After careful review, it was decided that a hysterectomy would be the best course of action for me. My doctor wasn't totally convinced that the surgery would take care of all my nausea and vomiting issues, but I was so miserable at this point that I was willing to try or do just about anything. Then came the day of surgery, and after having three kids by c-section, I didnt think the pain during my recovery would be any worse. I was dealing with the the pain of the surgery and then came the emotional aspect. I felt like I was going through post partum depression. It was awful...... Finally after about two weeks of being on hormone replacemant therapy, they started to do their job and emotionally I was feeling much much better. Unfortunately I thought my vomiting issues were behind me, I was so delusional!!!!! Three weeks after suregry I had to take my mother in for minor suregry. It was a long long day with my mother and I thought I handled it very well. I was wrong and sometime around 4 in the morning the next day after my mothers surgery, came the evil monster upon me again. I had started vomiting again and instead of helping my mother, she was helping me. I was sick for the next three days. Taking all things into consideration it had been over three weeks since my last attack, so I was still hoping that things for me would get better. Well, they didn't!!!! My episodes started to appear in the typical fashion as they did before my hysterectomy, only now I had fewer body parts than what I was born with. I don't regret my surgery beacuse it has in many ways relieved a lot of other symptoms, the biggest one having to be in constant pain all the time. If I soound like I am rambling on and on, I apologize for this but I just want to get as much on as I possibly can. Now this brings me to today and how I am feeling currently. All I can say is awful. I am sick all the time, I am in and out of the emergency room, I have little to no energy, in fact I am pretty miserable most of the time. Sometimes I feel like I am in a room with over a hundred people, and yet I feel alone, isolated in my own body. I realize now that no matter what I am going to continue to suffer this way the rest of my life. I don't like it and I refuse to accept it. I am urged by my mother and my boyfreind to look for a doctor who might be able to help me. For me, all I can say right now is I am done!!!! I am done with doctors, I am done with tests, and Iam just done with being sick. I wish I could will it away. I wish that my life is anything than the way it is now. I wish for a better tomorrow....

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

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

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

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

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.

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

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!

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.

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.

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.

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.