One more misleading article

I have sent off angry emails yet again to another Author and Editor of an article that was published where Cyclic Vomiting Syndrome was confused with Cannabinoid Hyperemesis Syndrome. I know that part of being a doctor is to try the easiest or an apparent course of action for treating any condition. This is why it is sometimes a very long journey to getting any diagnosis. This is what leads to multiple mis-diagnosis. Doctors are educated guessers.

They are literally trying to guess what is wrong with you and how to best treat you for it. Everyone has experienced this. My parent most recently. He went in for dizziness after hitting his head. He was given residual stroke noted on the X-ray, and told he had a concussion. Two ER trips later, He is admitted and treated for Stage four Cancer. He died 7 weeks later.

This was just my parent. My son, who has Cyclic Vomiting Syndrome, had a horrific medical journey himself. Most people do with CVS. My son almost didn’t live through getting a diagnosis.

So when I see these articles and media circuses surrounding Cannabinoid Hyperemesis Syndrome, I have to verify that the info that is out there is specific to CHS. I have not seen an article yet that was correct. Some that made it past Medical editors. Confusing CHS and CVS. CHS is affected by the use of Cannabis, CVS is  is characterized by recurrent, prolonged attacks of severe nausea, vomiting, prostration with no apparent cause and can be accompanied by severe abdominal pain. So.. let’s see “No apparent cause” or Use of Marijuana? This should make part of the diagnosis easier but it doesn’t.

See, the fallout and effect that this is having on CVS patients, is tremendously difficult. They are being treated like drug seekers or turned away from care. Even when testing for drug use comes back negative.

I wish someone would promote the effect that media and even Medical provider’s confusion is having on CVS patients.

I now live in daily fear that this will be the end of my son. He has reached what one article called the “approximate age group” of Cannabinoid Hyperemesis Syndrome or CHS patients. In other words he is, college age. Even with clearance of drug use, and a very extensive medical history of Cyclic Vomiting Syndrome noted in the file ( from an early age), it hasn’t seemed to matter for the “age” group. I am terrified that my son won’t live past this “age” group should he require care.

These stigmas and lack of correct information in the media is creating a very negative affect for those who suffer from Cyclic Vomiting Syndrome.

But, overall, it is noting a decline in the “Care” you get from your health”care” providers. It shouldn’t matter if you are there for CHS or CVS or something completely different yet showing the same symptoms. GettingYou should not be allowed to tell a patient that they should “Stop smoking weed” especially if they have cleared drug tests. If it comes back on the drug report, you still shouldn’t be able to say that.

It should be like discussing being overweight. We recommend that you look into evaluating your weight. Conditions like this can be exacerbated by weight. It may help alleviate your symptoms. IF I am overweight and there because of a condition CAUSED by being overweight. I wouldn’t be told to lose weight if I wasn’t.

But that is what is happening to CVS patients. I won’t say that they all wouldn’t test positive for drug use. I have talked with several that get to dangerously low levels of weight. I have seen my son do this. Looking skeletal. Cannabis has been known to help CVS sufferers eat. This can be critical, especially given the state of the medical attention that they get.

When my son was at his sickest, I would have given him anything to help him eat. He went into organ failure due to lack of nutrients and being given Intravenous fluids too fast. I have shared some of the dangerous medications that my son HAS and Continues to use to control his CVS. Each time he gets some of his medications, he may not live through that. But we know the risks going in.

The risks associated with going to the Emergency room are now far out weighing even taking his dangerous medication. Why? He may not even have access to the medication that will help him.

We do not frequent the Emergency rooms, but when we do, it is perilously close to losing him again.

When you have seen the effects of CVS up close and personal. Have seen the affects it has on a person’s life and well being. There is no one that would be able to confuse CHS and CVS.

As for drug seeking.. when I see my son curled up in the fetal position in absolute agony over the gripping, gut clenching, completely disabling, abdominal pain that is associated with CVS… you would be asking for pain meds too. My son didn’t even cry over having a hose forcible shoved down his nose. But, is completely disabled by the abdominal pain.

But after some of the ways that he has already been treated, as a child, by doctors, I am terrified of the outcome of this entire situation.

It will only take one ER visit accusing him of using that turns bad that he will stop getting care. Especially without someone to advocate for him. Please continue to help me fight this by contacting authors and editors and even patient advocates when you hear of this happening. The media is crying louder over the CHS then I could ever shout to bring attention to CVS.

 

 

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Posted in chronic illness, Coping, CVS, Cyclic Vomiting Syndrome, education, health, healthcare, hospital, IV Infusion, Rant, Uncategorized, Vomiting | Tagged , , , , , | Leave a comment

Who Should Pay for Pain medication addiction?

I’m pretty sure that every one pays for addiction in one way or another. But I came across a news story yesterday that upset me. I wish I could find it again  so I could share it. The story was about the cost of the pain medication going up to offset the cost of paying for the addicted users rehabilitation. This is beyond frustrating to me.

First, it is extremely difficult to GET pain medication when you need it that I don’t know how people can get the medication to begin with. I live in constant pain. Everyday. I was given 2 weeks of pain meds for my foot surgery 2 years ago and have lived in constant pain since then. I was offered a nerve medication that I was, of course, allergic to. But, there are no other options for helping me. Constant pain. That has now radiated up to my hip from my foot. EVERY DAY! There are nights I can’t sleep because the pain is so bad that there is nothing I can do to reduce it.But, there is nothing that can be done.

So HOW is it that there are people that are given enough to get addicted? WHO is giving them that? Becasue of HOW much pain I am in.. and I can’t get it. There has to be someone else involved. Or maybe I just tend to not rely on meds and do what I can to relieve the pain. Ice or heat.

I went to the ER in so much pain… that I WENT to the ER..(whichi if you know me.. you know I don’t do easily) Did I get Pain meds for my Pain?? No.

So where is the addiction starting? And who is helping them STAY there?

Why should some one who has to have surgery, or who has a chronic condition that requires pain meds be the ones that have to support the increase in the price of the medication because along the lines someone got addicted? I realize that, that could be part of the problem. People with chronic conditions are most likely the one getting addicted. But after  having lived with constant daily excruciating pain myself, I can see why. I would love for this pain to go away.

But, at what cost. Most chronic conditions are already very costly. This could be what breaks a lot of people.

When you are contemplating something like this, remember that Cancer is a Chronic condition.If you have had some one you love suffer through that, you know that the pain meds ease their pain when things get bad.  The pain meds, you are wanting to increase the price of, means that the little kid with a painful chronic condition may have to live with and struggle through that pain if his family can’t afford the medication.

It’s not just addicts that will suffer if the price is increased to pay for Rehabilitation. I think this decision needs to be evaluated. But, brings me back to .. I need to find the story.. 🙂

Rambling thoughts today.. How about you??

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Awareness Day

Cyclic Vomiting Syndrome continues to be one of the top 10 rare diseases. Many children and adults go misdiagnosed. On March 5, 2017 CVSA USA/Canada will be joining forces with CVS organizations around the world to promote awareness of Cyclic Vomiting Syndrome (CVS). On this day we will all be united in the global fight […]

via International Awareness Day 2017 — cyclicvomitingsyndrome

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Discover Challenge: Superpower

via Discover Challenge: Superpower

What’s My Superpower?

I’m a Mom. Not any ordinary mom. I’m the mom of a chronically ill person. A Mom who also likes a lot of DIY. 🙂

Does having a superpower mean I can leap giant loads of laundry in a single bound? Or that the levels of multi-tasking I can preform are yet still undiscovered by Mankind?

Pretty much (smirk). 

When you have 100 DIY projects going.. all the time.. you have to learn to multi-task. Or you never get anything done. Plus, when you’re a mom.. any mom or caregiver really, you hear those choking, gagging gurgling noises that proceed any type of Vomiting, you can leap anything in a single bound. Not just giant loads of laundry. 

But, my super mom powers were developed and honed from years of handling, researching and coping with my son’s chronic illness, Cyclic Vomiting Syndrome. 

Now I use my powers for good. I have been advocating, supporting and helping others with my “spare” time. Powers like mine could be used for evil.. But I chose to use mine for good. 

I think that having conditions or situations like ours teach us things we can share with others. 

It is a wonderful new adventure for me.

 How about you? What is your superpower? 

Posted in chronic illness, Coping, CVS, Cyclic Vomiting Syndrome, I Care About Rare, invisible illness, migraine variant, Rare Disease, Uncategorized, Vomiting | Tagged , , , , , | Leave a comment

Daily Prompt: Sincere

via Daily Prompt: Sincere

Today’s daily Prompt seems fitting after I read this article about a photographer Dad that posted a picture, that has gone Viral, of his daughter in pain from her cancer battle.

I am sincerely appreciative that he is sharing the worst. It is heartbreaking to watch your kids go through awful things like that. Very few people WILL or CAN understand those moments. Others understand all too well.

We have had more than our Share of those moments. I will not compare them to any child or adult that has been or does suffer from Cancer or a lot of other debilitating diseases or conditions. We all fight unseen battles.

My son, We refer to him as Chewy here on the blog, suffers from Cyclic Vomiting Syndrome, a rare condition. This puts him in the Chronically ill category. Our journey of getting a diagnosis was a very long one. Long enough that it almost cost Chewy his life.

So we know about the harsh struggles.

We know about the daily fight  to stay alive.20131015-135731.jpg

We know the heartbreak of watching the friendships go away.

We know about the people that mistrust and can’t believe the struggle you’re fighting is real.

We know that the medical community doesn’t understand the condition because you’re Rare.

We know that there isn’t enough known about the condition to treat him.

But, we know him. We know that the pain is real. The illness is real.

We’ve witnessed the sincere pain and agony and despair that creep in, in the times that become to much to fight.

That is why I FIGHT. I ADVOCATE and I EDUCATE others about Cyclic Vomiting Syndrome.

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To learn more about Cyclic Vomiting Syndrome or CVS please visit CVSAonline.org 

Posted in chronic illness, CVS, Cyclic Vomiting Syndrome, I Care About Rare, invisible illness, migraine variant, Rare Disease, Uncategorized, Vomiting | Tagged , , , , , , | Leave a comment

Daily Prompt: Volunteer

via Daily Prompt: Volunteer

This word hits me hard especially this month as I continue down my road of helping others.

Volunteer.

You see the picture that goes around Facebook of Jimmy Carter in his 90’s battling Cancer and still building houses for the less fortunate. Where do you think he learned to give back? Why?

For me it has been because our struggle with Cyclic Vomiting Syndrome and ALL that goes with it. The medical struggles with the medical professionals, the insurance coverage, the medications, the hospitalizations, the schooling.. the non-stop battles that you fight as a parent of a chronically-ill person.

If it hadn’t been for some of the conversations that I had with other parents in situations like ours, I would not have made it through some of the harder times with my mind intact.

They had been through similar or had suggestions or knew how to use machines or devices or had asked questions that I did not want to. They were fonts of information or just someone who understood what we go through. That understanding is the best part. Medical professionals can only do and say so much. They don’t know or live through what you do. The advice and suggestions of people who understand and live like you do is invaluable.

So, now that Chewy has been stable enough to allow me time to spread my knowledgeable wings.. I am sending my experience back out into the world. I have joined and try to keep up on Facebook support groups. I moderate a once a month call for a support call. I have gone through the volunteer process to start helping out with family interaction and advisory at a local hospital.

I’m volunteering to help and talk with people that maybe starting on their chronic journeys.

It’s a new adventure for me. What’s yours?

Posted in Cyclic Vomiting Syndrome, I Care About Rare, invisible illness, migraine variant, Rare Disease, Uncategorized, Vomiting | Tagged , , , , , , | Leave a comment

Emotional October continued

The other day, I touched on why October and November were the roughest times for us. The Feeding tube was from our first stay at UCSF in November of 2012.

That was our hardest struggle time. But, October 17th, 18th and 19th of 2012 are forever emblazoned on my brain as some of the worst days. Every year I re-live those days on repeat in my brain.

This year, I have been sharing a lot of those days. I have been doing a lot of advocating and support group work. I feel it is important to share. Sometimes people are in such a state of despair that they need to know that you can relate.

I can.

Becasue, usually when your life is falling apart in one place, it’s falling apart everywhere. It is an impossible feat to keep it all together all the time.

This sharing of information, listening and relating to others stories is therapeutic on most levels. It helps us all feel like we are not alone. We can share information and tactics for coping with a “Rare Disease”or being chronically ill.

However, is it taking a toll on me emotionally? October and November are emotional months for me anyway. But the constant reliving of what happened, the what could have happened.

Hubz says it is. That taking on helping everyone else is draining me emotionally.

I like to think that I am just sharing. If I can help just one person not to have to go through what we did…

Plus, although, there might be some lingering effects from the actual sharing of what we went through, I feel good knowing that I might be helping someone else. That what we went through could be avoided by talking to other people about it.

I always felt like we were treading water without being able to see land in any direction while were were going through the worst of it.

I can be a life preserver for someone. A bouy. A spot of land in the distance giving them a direction to head.

During the worst of it, that was all I felt like we needed.

That is why I do what I do.. support calls, support groups, Advocacy, advisory.

It’s just one more step in my CVS adventure. What’s yours?

#IcareaboutRare #CVS # CyclicVomitingSyndrome #Chronicallyill #MigraineVariant

 

 

Posted in #MHAM, American Migraine Foundation, chronic illness, Coping, CVS, Cyclic Vomiting Syndrome, I Care About Rare, invisible illness, migraine variant, MIgraines, Rare Disease, Uncategorized | Leave a comment