CVS Spotlight: Misty Nelson

Tell me about yourself: My name is Misty Nelson and I am from Fairbanks, Alaska and I am 43 years old.

Do you have any hobbies/interests? I enjoy dancing, tap, jazz, hula. I love the beach and spending time with my kids.

When were you diagnosed and how long have you been suffering from CVS? I was diagnosed in 2013 and have been suffering for about 4 1/2 years.

Any Doctor or Hospital horror stories? A lot! Usually being told I am crazy, that it is all in my head. Medical professionals would accuse me of making myself sick. I have also received a lot of misdiagnosis. While traveling out of State I had to stay at a hospital for 5 days. 

Do you discuss your disease with others (outside your immediate family)? Yes, I do discuss it with those that understand or want to understand. 

What is your go to routine when you get an episode? I grab a bucket, get pee pads for my bed and I either treat symptomatically or take all my meds depending how severe the episode is. I usually try to sleep it off.

What is one thing you wish people would understand about CVS?  That I can’t control it and I have my triggers. I would not choose this life and it’s NOT the flu!

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CVS Spotlight: Stephen Narens

There are a lot of CVS sufferers around the world young and old. In this blog post we will feature an interview with CVS sufferer, Stephen Narens.

Tell me about yourself. My name is Stephen Narens, I am 50 years old and from Wheeling, IL.

What are your hobbies/interests? I enjoy photography and spending time with my kids.

When were you diagnosed and how long have you been suffering from CVS? I was diagnosed back in 2001, but was suffering for years prior.

Any Doctor or Hospital horror stories? Yes, for sure. Just like all of us. Usually the same story just different Emergency Department. Staff would accuse me of being a drug user/seeker and told me it was all in my head. Doctors would perform useless tests on me even when I was having a full on attack (episode). Being alone in the hospital is the worse. My advice would be to always have someone with you that knows you and your CVS. A voice at the ED is a must!

Do you discuss your disease with others (outside your immediate family)? I did not at the time.

What is your go to routine when you get an episode? Hot baths and sleep are my best friend. I stop eating all together until I get my appetite back. Once I do, my wife makes me what we call CVS chicken. Its a great meal and I eat it up.

What is one thing you wish people would understand about CVS? That it can come at anytime, and I do mean anytime. Just because we look normal one day does not mean that we are better. I wish people would be more understanding when we have to cancel plans last minute. Because its due to the fact that we are sick. But please don’t stop inviting us! It hurts me how many people have no faith in me and have stopped including me in plans.

 

International Awareness Day 2017

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 against CVS!

The CVSA website  has a lot of great tools and resources about CVS. You can use the sample Emergency Room/Urgent Care letter to educate medical professionals.

Does your child struggle to explain CVS to classmates and friends? Utilize the “Helping your classmates understand CVS” slide show.

Spread the word, Hope Starts Here!

Surviving the Holidays with CVS

The holidays are right around the corner and it can be a very stressful time for CVS sufferers.

Some simple tips to surviving the holidays.

• Sleep – lack of sleep can be a trigger for CVS suffers. So around the holidays it is especially important to get plenty of rest.
• Hydration – drink plenty of water at those holiday parties and adults should avoid alcohol.
• Relax – try to keep the stress away and enjoy time with friends and family. But don’t overdo it.
• Eat – make sure to try and eat healthy nutritious meals. Don’t skip meals and try not to overindulge. Rich foods can be a trigger for some.
• Exercise – be active with your family. Take a walk or enjoy the outdoors together (build a snowman, make snow angels, go sledding). Exercise can help relieve stress as well!

Happy Holidays!

Sharing that I have CVS

I am very open about the fact that I have Cyclic Vomiting Syndrome (CVS), if the topic comes up for some reason. Although, through various experiences I have come to the conclusion that it is best to air on the side of caution when it comes to sharing the fact that I have CVS with others.

Below are some scenarios that I am sure a lot of other CVS sufferers also have experienced:

• How is this different from bulimia or anorexia? CVS is not something that a sufferer has control over–they don’t want to vomit, and it is not an eating disorder.
• I know how you feel, I have had the flu….Actually, you don’t CVS is nothing like the flu. It is caused by different factors–stress, weather, other illnesses, certain foods, etc. CVS reoccurs unlike the flu, and sufferers deal with it multiple times a year.
• You vomit all the time? No, there are other symptoms that come with an episode besides vomiting. In fact some CVS sufferers may have episodes that don’t include vomiting at all. Other symptoms include nausea, paleness, migraine, tiredness, inability to swallow, sensitivity to light, etc.
• I have never heard of it…CVS is always ranked in the top 10 of rare diseases and it often gets misdiagnosed. Just because you have not heard of a disease does not mean that it doesn’t exist.

I work full-time and none of my co-workers know that I have CVS. If the topic comes up for some reason I will be open about it, but I don’t feel the need to bring it up. My family and close friends are aware of my disease, which is what is most important to me.

Why I Run

The CVSA 5k Run/Walk “Run for the Bucket” is celebrating 10 years. For 9 of those 10 years I have participated in some form. I really enjoy this race because it combines two things I am passionate about – running and CVS awareness.

It has become a tradition for me to travel to Wisconsin every year (I now live in the Chicagoland area). The race brings together families and individuals affected by CVS. It is great to see all of the younger kids having fun with the 1/2 mile kids fun run before the 5K. They all get a finisher’s medal!

The location is great as well. Frame Park is located in the heart of downtown Waukesha and is conveniently located near the highway. The race has also grown throughout the years – it had to be moved to the larger Rotary Building within Frame Park.

In addition to funding CVSA’s important initiatives, partial proceeds will benefit promising medical research at the Medical College of Wisconsin in the areas of causes, diagnosis and treatment of Cyclic Vomiting Syndrome.

Can’t join us on June 4th, but still want to show your support? Complete a registration form, find sponsors to support you and CVSA will assign a volunteer to walk on your behalf.

There is still time to register!

Growing up with CVS to Conquering it in Adulthood

When I was finally diagnosed with CVS at 6 years old, I can only imagine how relieved my mom was to finally get an answer to what was making her kid sick all the time. Thank goodness we lived near Children’s Hospital of WI who had specialists that treated CVS. During middle school and high school there were a couple of major hiccups with CVS.

First, I was in sixth grade and we couldn’t abort the episode at home. So, my mom and I headed to Children’s Hospital’s emergency room. After waiting a while we were seen and then they eventually admitted me. As many CVS sufferers know, a lot of healthcare professionals are unaware of CVS, because it is so rare. I will never forget what one of the doctor’s asked me during that hospital stay. They instructed my mom to step out of the room, and proceeded to ask me if I wasn’t sure that I was actually pregnant. Why would that be your go to for a sixth grader? No, my symptoms and pain was because of CVS!

Second, I was a freshman in high school. The routine was the same, go to the emergency room, and get admitted. This episode sticks out in my memory because it was and still is the scariest episode that I’ve ever had. Nothing was working, and I ended up having to stay for about a month. Luckily for me, my mom was a real trooper and stayed with me the entire time. She had to sleep on a couch. Of course, my dad, older sister and brother came a lot as well. During the stay we had a lot of different nurses, some great and some not great at all. It is still crazy to me how many tests I went through during this stay. Most adults will never have as many tests during their lifetime. I was finally getting better and eventually was discharged.  Because of CVS I missed basketball and finals at school. The majority of my teachers were understanding and I was able to make-up my homework and exams, so it didn’t affect my grades. It did however take a significant toll on my body. I lost a significant amount of weight, most of that being muscle. It took me awhile to regain my strength to be able to be active again. Which was frustrating since it was the middle of basketball season.

Lets fast forward to college and post-college. I was able to go away to school in Northwest Indiana. My specialist gave me prescriptions to use in the event that I had to go to the emergency room. I made sure to let the University’s health center know about my condition. Luckily for me during my 4 years I only had a few serious episodes. I was able to enjoy college life and ended up graduating summa cum laude.

Now I am a 26 year old young professional living in the chicagoland area. I am working in the non profit fundraising field, which has been a goal of mine since early college. I don’t let having CVS affect my personal life. I enjoy being active, doing kickboxing, boxing, and weight lifting. My passion for running has not been affected either. I have completed 4 half marathons and 1 full marathon.

My advice to young CVS sufferers, learn your triggers, take your meds as soon as you start to feel sick, and go live your life!

CVSA Around the World

Source: cvsaonline.org

 

On March 5, 2016 CVSA organizations from around the globe will gather in the fight to raise awareness for a debilitating disease that affects children and adults.

How can you help?

• promote awareness on social media, in newspapers, on the radio, and TV
• contact your local emergency department or urgent care facilities

More information to come. Have a great idea for International CVS Awareness Day? Contact cvsa@cvsaonline.org.

Summer Must Reads, CVS Related Books

School is wrapping up and summer trips are starting, which is the perfect time to add CVS related books to your reading list.

Here are a couple great reads:

Breaking the Cycle, by Tricia Andersen                                      

This sports romance novel addresses the hardship that CVS sufferers go through to get diagnosed. Tricia Andersen brings to light a story that many CVS sufferers, especially adults can relate to in some way.

Living With Cyclic Vomiting Syndrome: A Journey to Hell and Back, by Chrystal Ann Rutledge

Chrystal Ann Rutledge gives readers an important look inside the daily life and struggles of “CVSers.” This is a great read for family and friends of CVS sufferers to better understand what they go through.

Rare But Not Alone: Raising Kids With Cyclic Vomiting Syndrome, by Colleen Rice        

This book takes readers behind the scenes and shows what CVS is like from a patient’s perspective, as well as a parent’s perspective.

Happy Reading!

*For more information & resources regarding CVS (Cyclic Vomiting Syndrome) visit cvsaonline.org.