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.

 

 

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

Emotional October

I haven’t posted in a while, I’m sorry.

A lot of it has to do with I don’t know what to say. Then I sit down and the words just trip over themselves to get out and the posts make no sense.

But, today I started out my day with a good  cry. I have been sharing a lot more of our Cyclic Vomiting Syndrome journey then we used to. There are things that I haven’t told any one. That a lot of people didn’t know about. Heck, most people don’t know I have a blog. This is my way of sharing.

So this morning, I shared a part of that, that I haven’t shared. The feeding tube. The feeding tube was traumatic. Probably more so because Chewy would know what would happen. He had shared a room with a kid that had to have one.. and although the parents were asked to leave the room, the same courtesy was not afforded to us. So Chewy had to listen to that kid scream, cry, plead, struggle, gag, fight and eventually vomit during the process. Imagine his horror when at another inpatient, they kept suggesting that he needed the feeding tube. He was adamantly against it.

He was eventually over ruled. The doctors, a team of around 40 of them, consisting of Gastroenterologists, Neurologists, nutritionists, Pediatricians, you name it they were there, all agreed that his organs were failing and his body was showing signs of shutting down. The best way to reverse  what was happening was to get him nutrition. He was not strong enough to go through surgery for a port. The PICC line  had not worked. The NJ tube would be the best thing for him. I knew they were right.

I let them come in and put the tube in.

He had asked me for days to promise that I wouldn’t let them. Each time I told him I had to wait and see what happened. He still swears I promised.

So, when the nurses came in.. it was the worst experience of my life.

Not only did I have to help hold him down..

But, He screamed, “I hate you, I hate you, I hate you..” over and over and over while giving me the stare that conveyed the thought more than the words.

Then, he started to cry and tell me, “but, you promised.” Gagging as they forced the tube down. My heart shattered.

One of the hardest decisions that I have had to make as a parent. I would do it again in a heart beat.

Does Chewy hate me?

Probably. Because I nag him everyday.

Does he hate me for that?

Yes and no. We have talked about it since then. A few times, because let’s face it.. It is not anyone’s favorite moment. But, I think we needed to clear the air. He knew it needed to be done. That there wasn’t another way. He just wishes there was. As do we all.

Becasue of how long his episodes can last, they have told him that the feeding tube could happen again. Luckily we have found something that lessened the episodes and haven’t had to go through that again.

But, this is just one thing that set off my thoughts this morning. Some of our worst struggles were in October and November. So it is hard not to reflect on that each time October rolls around.

It is, however, very nice to know that, that was almost 4 years ago. That we are not there anymore, struggling for answers or help with our care or direction. That with the care we are getting Chewy hasn’t ACTUALLY thrown up in almost two years! He still struggles with severe nausea and horrible migraines that we have to keep in check on a DAILY basis to keep that record going.. but, we have the medical help necessary to do that. Not everyone can say that.

Today, I wish you all well with your Medical Adventuring!

 

Posted in chronic illness, CVS, Cyclic Vomiting Syndrome, hospital, Vomiting | Tagged , , , , , , | 4 Comments

Moms like me

I’m crazy.

In case you haven’t read my blog title, or figured it out by reading about my exploits. I’m unhinged and a little more off kilter than the average mom:).  And I completely embrace that. It’s what makes me who I am.

What, also, makes me who and what I am is being the mom of a Chronically ill person, as well as, maintaining several chronic conditions of my own. Again, if you haven’t read about our medical maneuverings the last few years.

I have been spending a good deal of time with more Mom’s like me. I have been working on peer support calls, spending more time on the message boards and Facebook pages of  support groups.

I contacted a local hospital and have started talks with them to work with increasing peer support at the hospital level.

The hospital put me in touch with a support group that has parents that are familiar with Cyclic Vomiting Syndrome. Most have autoimmune conditions, Crohns and Colitis but really any thing that affects your GI tract.

I went to their group meeting last night.

It was.. Refreshing, validating, comforting, Fun..

They were moms that you could tell needed.. “Mom time.” What do they do with their “mom time”? They help other mom’s. They get together to support one another through common issues. Navigating medical obstacles, doctor suggestions, insurance changes and challenges.

It is weird to say refreshing, but I will admit that it was. Because you always feel so alone in dealing with stuff like that. That you are the only one having these issues. When you’re not. But, it REALLY feels like it. When you talk to other people you get pity for what you deal with.. not people who actually experience it. These mom’s have experienced the SAME THING!!

That is very comforting. Knowing that you’re not alone in dealing with this. Even though I have talked with people on the phone, or message boards, or Facebook. SEEing and MEETing people that have fought the same fight, know what you deal with, and have empathy, NOT pity, was a huge comfort. I felt at home.

I don’t have to explain to these moms. They understand. They could joke about the nasty stuff that we do. Becasue you can’t take life, like this, serious all the time.

So, I apologize for being out of touch for so long. But I have been out trying to single-handedly save the world, by sharing the information that I have learned through our Chronic Journey and I am enjoying the adventure.

 

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Inhuman

I hate the Emergency room. HATE IT ! I find every way I can to avoid it.

This week I wasn’t so lucky.

I was and have been sick for a few months. I say a few months because I have been fighting an infection for four months. FOUR MONTHS!

Each time it comes back it takes an eternity to get the medication needed to treat it. First is the doctor’s appointment. Then the possibility of test to confirm the diagnosis. Medication goes through an authorization process. Then, the pharmacy usually doesn’t stock the required medication due to the price tag attached to it. This requires that it be specially ordered.

This wouldn’t be a big deal… Except that each day without medication, means that infection is growing. This process has taking up to a week. Resulting in the infection being too much for a 10 day antibiotic to cover. So we end up back to square one.

Four months later we are still back at square one.

This time I couldn’t handle the pain. ME.. not handle PAIN!! I know.. shocking. According to my CVSr.. Becasue I have brown eyes and am female, my pain tolerance is higher. Add to that, that I have been in pain my whole life.. It means that my level of pain tolerance is much higher, than the average person anyway.

That means, when I choose to go to the Emergency room, there is a reason.

However, I didn’t choose it.

I had gone to the Urgent Care  to AVOID the ER. Urgent Care decided that I was “Too SICK,” for them to handle. They called an ambulance to take me to the ER.

I have had bad experiences in the ER before. This one wasn’t terrible. I have by far had worse. But, if I were an animal, my treatment would have been considered inhumane.

Does that mean that this one is considered Inhuman?

It felt like it.

It starts as you are wheeled into the ER via the Ambulance entrance. You are no longer a person. You are a patient. A number. Not a person.

Everyone around starts talking about you like you aren’t even there. You’re sitting right there. But you no longer exist. You’re a chart. A number. A patient, not a person.

Even after the hand off from ambulance crew to the nursing staff has occurred.

I was put in a room and instructed, not asked to disrobe and put in a scrap of cloth.. that won’t cover a good portion of me. Being 5’10” there is a lot of me to cover. This little cltoh doesn’t’ even meet in the back. Even with my 25 pound weight loss and I am not a large woman. Just a tall one.. and this reaches to the mid to upper thigh.  The bed I am provided does not even have a pillow.

The nurse is rude and uncaring when I tell him that the IV is not sitting right and is painful. “It pulls fine,” is his response as he gathers up the debris and leaves anyway.

As you sit for hours waiting for them to do anything.. you pass the time listening to the nursing staff talk. They laugh about the patients and their dilemmas. Which I find rude. They don’t refer to them by name.. but room number. So if you are ambulatory, you could walk by and see. Or glimpse on your way to a test. So really Privacy is being violated.  As I felt mine was because not only do they stand in the hall and blurt out your entire history of anything even remotely wrong with you, if there is any CDC related things.. You are now treated like you have the plague.

This is completely understandable, as a caregiver of a chronically ill child… I am a known Germ-a-phobe. However, being that we are in and out of medical facilities that HOUSE a very LARGE percentage of the nastiest germs known to mankind… we are exposed to them. We are also immune compromised. Which also makes us susceptible to them.

This is where the the most inhuman part comes in. Becasue you are or have been compromised by these diseases or infections.. You are no longer treated as a human.

If you have to use the bathroom. You can only use a bedside commode in plain view of ANYONE. Anyone can walk in and DOES with no care for your privacy or personal feelings. YOU, are no longer a human being. Becasue you had the bad misfortune to contract a disease or infection caring for someone else. Do your feelings matter? Not anymore.

Does your pain matter? No.

You are tossed into a room with a place to use the bathroom and forgotten about.

Does this picture I have painted sound (look) familiar? It sounds like any caged animal that you have ever seen treated abominably . I wasn’t given any food or water and I was there for the entire day. I was given an IV initially. But once they got a urine sample no more was “required.”

I was there waiting for help for hours. Which is pretty standard for an ER. However, my last test was at 3:30 and at 8:30 I signed myself out of the hospital. That seemed a bit excessive even to me. I was never helped. I found no relief for my pain. I got no answers that day.

But, the worst part.. was my treatment. I was no longer a person. No longer human. I’m my condition. I’m what’s wrong with me. I no longer deserve to be treated with respect and dignity because I felt awful enough to seek emergency help.

I won’t even call it CARE. Becasue if they cared.. they would have brought me a pillow.

 

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