Why I Run

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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

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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.

CVS Awareness

With Cyclic Vomiting Syndrome being ranked as a top rare disease, awareness is very important. There are 2 events in particular coming up:

  1. Rare Disease Day- February 28th                                                                                                                                 This year’s theme is Living with a Rare Disease-“Day-by-Day, Hand-in-hand.” This International Day of Awareness focuses on the daily lives of patients, families and caregivers who are Living with a Rare Disease. Currently there are over 6,000 different rare diseases directly affecting people’s daily lives. 
  2. International Day of CVS Awareness- March 5                                                                                                              CVSA USA/Canada will be joining forces with CVSA organizations throughout the world to promote awareness of Cyclic Vomiting Syndrome (CVS). CVS is a debilitating condition that affects about 2 percent of school-aged children and many adults who are mis or undiagnosed. Visit: http://cvsaonline.org/international-day-of-cvs-awareness/ for more information. Join us for 3 different phone support groups!     

6 Things Only CVS Caregivers/Family Members Understand

  1. Events and outings can be interrupted at a moments notice.

An episode can strike at a moment’s notice for no specific reason. Vacations, school field trips, church mass or even simple dinners can be interrupted. This is why it is so vital that the family members of CVS sufferers always have a spit up bowl and abortive medication on hand.

2.  School nurses are your best friends.

It is important to instruct the school nurse and supply them with current medications. Instructions on what specifically to do should be given as well.

3.  Spending nights and days in the Emergency Department is the norm.

Moms, dads, or even siblings know the inside of an Emergency Department all too well. I remember one particular long hospital stay where my mom stayed with me 24/7 and slept on a make shift small couch bed. 

4.  Crying and getting emotional occurs often.

It is heartbreaking to see your child or loved one sick and not being able to do anything about it.

5.  You know what an Episode Diary is.

Recording and keeping track of episodes is helpful for reporting to the doctors. It can also help with preventative planning by knowing what things to avoid in the future. For example, sleepovers, strong odors, and concussions have all been contributors to some of my episodes.

6.  Friends, family members, or co-workers don’t understand why your child is getting sick.

CVS is a very rare and serious disease that others don’t understand. It is common occurrence for people, including medical professionals to not understand why a child is sick. It is important to advocate for the CVS patient and raise awareness. It is not your fault that your child or loved one is sick. CVS can strike at anytime for any reason.

International Day of CVS Awareness

Mark your calendars for International Day of CVS Awareness!

On March 5, 2015 CVSA USA/Canada will be partnering with other CVSA organizations throughout the world. The current participants include the United Kingdom, Ireland, Spain, Italy, Japan, Netherlands, and Germany.

We are currently in the planning stage, but hope our members will promote CVS Awareness through social media, newspapers, radio, and TV.

Have a great idea on how to raise awareness? Contact CVSA at cvsa@cvsaonline.org.

Holiday Tips

The holidays are a great time to have fun and spend time with family. However, it can also bring about triggers for CVS sufferers.

Some helpful tips:

  • Exercise and be active
  • Get proper sleep
  • Learn from the past (avoid previous year triggers)
  • Treat sinus and cold problems
  • Avoid foods that trigger episodes or foods with additives
  • Try to keep stress to a minimum

For help and support visit http://www.cvsaonline.org

6 Things Only People with CVS Understand

You’ve Seen Every Type of Specialist

From Neurologists to Psychologists people with CVS have seen them all. One specialist will direct you to go see another specialist, simply because CVS is so rare they don’t know what is causing us to get sick.

The Emergency Department Nurses (and Doctors) at your Local Hospital Know You and Your Family by Name

CVS patients know the routine of heading to the Emergency Department all too well. With a lot of sufferers having episodes every month or more, sometimes our home care remedies don’t do the trick, so the only option is to hop in the car and head to our local Emergency Department to see if they can abort the episode. Some things to bring for trips to the ED include Kleenex, a throw-up bucket, water, episode diary, and our favorite blanket (for children sufferers). 

You Name a Medical Test, We’ve Had It!

CVS patients have gone through many medical tests per doctors requests to try to pinpoint what is causing our illness. However, as many of us know, there is no known cause of CVS. Some typical tests include EKG, CAT Scan, Ultrasound, Spinal Tap, Blood Tests, etc.  

Our Classmates, Co-Workers, Friends, and Family Members Don’t Understand Why We Can’t Do Certain Things

Those who have been suffering from CVS for awhile tend to stay away from previous things that have caused episodes for us in the past Most people don’t understand, or comprehend why we refuse to do certain things. For example, for me I refrain from drinking alcohol excessively, because I know after one or two small drinks I start to feel funny. When it comes to preventing episodes CVS sufferers will go to great lengths to make sure that an episode does not occur. Some people even stay away from certain types of food (i.e. rich or ethnic). 

Silence, Darkness, & Sleep Are Our Best Friends

During an episode CVS sufferers have a sensitivity to noise and light. A lot of sufferers need to be in a room where they can sleep in silence and complete darkness. 

We Are All Too Familiar With The “BRAT” Diet

The “BRAT” diet or bland diet is known for being the bananas, rice, applesauce, and toast diet. This diet is typical for CVS sufferers to abide by during and after an episode. These foods are low in fiber, so they don’t cause gastrointestinal upset.