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Living Life Rare

Updated on February 9, 2018

What Does It Mean To Be Rare?

Since the moment I was born, I was always unique. As an infant I had to be on a heart and breathing monitor, as I grew up I was in and out of the hospital with doctors just adding it up to a 24 hour flu bug. It wasn't until I was 20 years old and a chance viewing of the Doctors did my mom learn of what Cyclic Vomiting Syndrome was, finally our 20 year search was over. It is believed 2% - 5% of the world population live with Cyclic Vomiting Syndrome, so many others without a diagnosis. When no one knows what a condition is, you learn as you go how to continue to live your now rare life.

How Do You Cope With Rare?

With living with not just 1, but several rare conditions that many have never heard of, doctors assuming you are seeking drugs any time you visit the Emergency Room or hospital in general, you learn ways to cope and continue forward. The key is a strong support system, for me I was blessed enough with a supportive husband, parents who are still involved in my life, and my rare living support groups. Finding that support system is key to living life Rare and happily.

What About Treatments?

A question I get all the time, what about medical treatments? Why not go to the hospital or visit a doctor more often? Why do you suffer so long at home sick or in pain before seeking help?

  • To answer simply, people who live rare are greatly mistreated by most medical staff. We often are seen as faking, drug seekers or simply us stating our condition to a doctor who does not have any clue what that specific issue is and no care to learn.
  • It is a HUGE problem in the chronic illness; aka Rare community, many go without medical treatment until they are in dangerous situations medical wise and life saving procedures need to be done simply because of fear of mistreatment, or no help at all.
  • Majority of rare chronic illnesses are what are called "Invisible Illnesses". In other words a person living with the condition can look completely fine, normal as if nothing is wrong at all mean while inside our body is constantly in a fight. Because of this we are often conceived to be faking our symptoms when we seek medical care.
  • Sadly, the biggest reason why most do not seek medical care? Because there is not enough funding for research to learn the cause or possible treatments for several conditions, leaving patients treating symptoms without hope of any real relief.
  • But there is still hope!

We Need Awareness!

There is only one way to help those living Rare have hope. Raising Awareness! Educating any chance we get and share, share share the story and the facts!

My Own Battle

I have been living rare since the day I was born. Majority of my childhood memories have to deal with doctors offices, different tests I had endured and countless hospital trips and stays with still no answers in sight. I had lost all hope knowing what was wrong with me when my mom by chance while getting ready for work had seen an episode of a tv show where they were talking about Cyclic Vomiting Syndrome following an episode of Grey's Anatomy that highlighted the condition.

Intrigued by what they had discussed she had heard on the show she immediately went to research mode, more she learned more added up to what could possibly finally be an answer for me. 6 months later I had finally received a diagnosis; and while there is currently no cure nor real treatment for Cyclic Vomiting Syndrome, knowing what monster I was fighting made the battle so much easier.

  • Nearly 6 years later, CVS is not the only answer I have found. In the past 2 years I have learned I also battle with Fibromyalgia; a condition which I find hard to explain myself and is not entirely understood as it includes the brain sending false or extreme pain signals throughout the body causing wide spread pain and spasms; at least that is how it is in my case.
  • I had been diagnosed with a rare heart condition called Tachycardia in which my heart rate is sporadic and prone to be as high as 175 while resting if remaining untreated; unfortunately it one day will require surgery however I hope to keep that day at bay for as long as I can. After watching the struggles my own mother had in her battle with Tachycardia, the surgery to correct it and the rare condition POTS arriving after surgery I do have fear as I continue to fight; but I have the wonderful support of my mother who always reassures me when I need it most.
  • Believed to go hand in hand with Cyclic Vomiting Syndrome, I have battled Chronic Migraines since I was around 15 years old. As I grew older they have become increasingly worse taking several different forms from your "normal" run of the mill migraine, tension migraines and sinus migraines all which come from different triggers.
  • Lesser issues I fight along with these primary issues are old injuries from when I was a child as well as from when I was in a domestically violent situation as a teenager, Celiac Disease; another rare condition, PTSD, Severe Anxiety and Depression, Asthma and several allergies. Why do I mention these in my battle? Because all of these battle against each other and my more severe conditions, causing a flare up of any or multiple of my issues at any time leading each and every day to be a battle.

Even with all these challenges, I never give up hope turning my battle into my power to help create change, awareness and to help others in similar battles continue to hope for a cure. I couldn't do all that alone.

Masking Pain or Illness = The Rare Life Game

New Years Eve 2017. Believe it or not I was absolutely miserable when the picture was taken but that is life living Rare.
New Years Eve 2017. Believe it or not I was absolutely miserable when the picture was taken but that is life living Rare.

Tips For You

Life Rare is not hopeless, Create your support circle. Find online or telephone support groups, talk to your family and/or spouse, a member or leader of your faith; pastor, priest, rabbi, elder, whatever it may be. Believe it or not there are so many ready to be there as moral support and you can find others who live like you who are happy to help if they can.

Support Is Key

I know I am a rare case in the lives of those living with chronic illness, but I hope instead of being rare in a rare world to help be an inspiration or lend a hand to others.

When I began my journey I felt helpless until I found power in knowledge; learning as much as I possibly could about what I am battling. Research, asking questions and eventually finding my way to several support groups via Facebook for Cyclic Vomiting and other conditions finding myself surrounded by support of those in similar battles.

I became honest to myself how I felt while I battle daily, the next step was being honest with my husband and my family. I was astonished by the support and being surrounded by love of my family who stands besides me each turn, each treatment each scare and each triumph along with helping me raise awareness not only to provide hope to myself but to others like me.

Being a Christian woman I had also found support within the church my husband and I attend; as an added bonus my husband has found a care givers support group for those who love and live with those with chronic or terminal illnesses.

I know not all will find the support I have right away; trust me it takes time. However, remember there is always going to be someone out there ready for you, ready to help you fight another day

Hope Is The Way

Hope is the key to fighting through a Rare Life. Hope for a better future, hope for better treatment, for a cure.

For me I hope for all those and closer to me dreams. I dream of starting a family with my husband something that had been difficult due to my health battles. I dream of working on improvements on my home, becoming more independent, being able to leave my home and enjoy life in new ways more often than I had in the past 5 years.

Each day I find a new hope, each day I wake up, fight through and smile as I do because that is how I continue with my strength.

Find a way that helps you battle through or if you know someone who is living rare take time to remind them you are there and they can continue.

Hope is all we have, Keep your hope alive.


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