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