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....