There was a time long ago when this blog was taken over by puke posts. Yes, my young man struggled with what we now know as Abdominal Migraines or Cyclical Vomiting syndrome. But at the time we didn't know and I would have done anything for answers or to find other people going through the same thing. Many of you were here for those stories and the outcome as we worked through solutions.
For those that weren't here, the poor kid was tortured via doctors trying to find answers and our life was forever changed.
But without getting the help we needed and the horrible toll the pukes played on our family, I didn't give up and began my own research. Once we figured out the true cause of his condition, this Mama went on a rampage to make it go away.
And with that I wanted to scream from the roof tops. I wanted to march back in to every doctors office and tell them what I learned, how wrong they were, and make sure that no other family would ever have to go through what we did.
It would take a couple of years to make it go away completely but the episodes became more sporadic and less violent with shorter durations. We quickly went in to action and learned how to work with them naturally so he never had to go back to the hospital and we worked towards a body biome of wellness. Boosting his immune system while healing the gut and digestive tract.
I wanted to figure out how to reach every person suffering with this and explain how to shift the pattern. Through the years I've heard from one or two people via message boards. Or tried to assist a couple of families in finding answers, but people just don't want to hear that they can control it.
I never understood this, and never knew how bad it could have been for my little guy nor understood the sheer magnitude of people out there dealing with CVS or Abdominal migraines....until......
Someone posted their story on Facebook and it went crazy viral during the ALS Ice bucket challenge phenomena. From there, they started their own Facebook page and it has almost 10,000 likes in just over a week.
10,000ish people posting stories, comments, and struggles of their experiences with this condition. An entire community of people dealing with this. There is even an organization put together plus 100's of groups. I had NO IDEA!! They are asking for a cure, taking crazy medications, destroying their insides,vomiting consistently for days, 125 hospital visits in a year, burning holes in their esophagus, having surgeries, feeding tubes, creating secondary diseases, losing jobs, going on disability, children dying from complications or spending 1/2 their childhoods in hospital beds. The stories were so horrible that I myself couldn't "like" the page and had to stop looking at it. Because all I want to do is scream and say:
"It doesn't have to be this way, there is a hope and a change that is within your kitchens"
Seeing the stories posted day after day had me drawn in. Like watching hurricane coverage on the news. I was so sad for these complete strangers and my emotions brought up a flurry of thoughts from our own struggles but then I switched more to a place of thankfulness.
I was thankful for being able to advocate for my son. For not being so glued to what the doctors were saying that I could follow my own intuition and create change in his life. I was thankful for the local angel that suggested migraines as a cause, because this changed how we "treated" him. And most of all, I was thankful while reading those stories that I was able to gather enough knowledge to push through societies norm and create a wellness solution instead of a sickness solution.
I was incredibly thankful that my son didn't have to endure what these other families did day after day, year after year. Some have mentioned dealing with this for 7-20yrs and more. Looking back, I'm thankful for the experiences that made our lives what it is today.
Don't get me wrong, I would have loved for him to never experience Abdominal migraines to begin with. But by finding the triggers, we also stopped his chronic ear infections, skin rashes, sinus infections, attention/mood swings and so much more, that we would have never known how to naturally get rid of. Not to mention changing my career which gave us more time together. And we have been able to share wellness tips with 1000's of people through the years by what we've learned along the way. When I say our life was forever changed, that is only a tiny bit of the reality.
By changing diet, lifestyle, cleaning products, learning more about natural remedies, healing foods, herbs and nutrient deficiencies we were able to give this condition the boot along with other things.
The cure isn't necessarily surgery or a pill in most cases. It is a shift in how we live. And how we should be living anyway. It is learning about food sensitivities, sensory sensitivities and so much more.
So here I am with the solution of what worked for us and sitting in this spot all these years later where I still want to scream and share. Yet there is now a community of 1000's of people that could use this kind of support and I have to stop looking.
Why? Because it does me no good in my current life to look backwards. It also does me no good to read stories that make me feel sad. Hence reason number 285 why we don't have TV in our house.
But then I felt guilty. I'm a health coach after all!! I'm determined to make a difference in the lives of people dealing with this syndrome. It is one of the reasons I followed the wellness educator path. So how can I stop looking when these are the very people that need my help the most?
Well, I didn't just stop. In fact I posted, commented, messaged, I've reached out to share our story. I've explained that what they are dealing with doesn't have to be. I've offered hope, support, suggestions and my contact info.
But I kept finding however that no one wants to hear this. I'm not offering a pill to hide symptoms, I'm not a doctor or specialists, I'm offering a new look at triggers and lifestyle changes that is being ignored and they don't want to hear that. These parents and adults going through this have probably heard it all by now and so my words are just another opinion to them.
It is frustrating because you want to help but it is like the diabetic eating an ice cream cone, a heart disease patient eating a steak or liver disease patient drinking a beer. The same holds true with a CVS patient eating an artificially filled cupcake in one hand and a puke bucket in the other. You can't help those that aren't ready for change.
I got to a point where I was cringing at the site of pictures on the page. Even the "feel better kits" shown were filled with the very things that cause episodes. Yes, I wanted my son to have a "normal childhood" too. But it was more important to me that he nixed the birthday party cupcake in lieu of vomiting until he was placed in the hospital.
I'm not saying that how I chose to move forward is the only way or that those parents are doing it wrong, I'm saying that they just don't know there is a different path. And they are doing the best they can with their current knowledge.
I've been where they are.... in tears, at the end of my rope not knowing how to help my helpless little boy. Thinking I'd done everything possible. But that changed when I took a different approach.
I think it is Awesome with a capital A that this family reached out, built a community and found 1000's of people that now create a support system, sharing and awareness.
It is everything I had wanted years ago that all of these people now have and that is wonderful. But with awareness, community and support should come the ability to share options of wellness. And open minds that are willing to regroup, shift and create change.
They don't seem to be there yet. But Someday!!
Maybe it is best that I was on my own all those years ago to find solutions. And maybe by reaching out to this new community, I'll be able to plant seeds towards a different future in their own lives someday.
But I'm realizing at this stage in my life, I need to look at it from a professional coaching standpoint and not take the stories so personally or allow them to be upsetting. As everyone is on their own journey just like with anything else that makes me want to bang my head in to the wall.
I've reached out, and I hope others will too. Until then, it is time to put that chapter to rest.
If you know someone dealing with Cyclical Vomiting Syndrome, chronic vomiting, migraines or abdominal migraines, I would be more than happy to share our story, offer support and what worked for us. This isn't the end of my mission to help people, it is just a new beginning and a realization that shouting from the rooftops doesn't work. (Note: I never really shouted from rooftops)
But I'm here on the ground creating our own path toward ongoing wellness and sharing for anyone that is ready to do the same.