Thank You

Almost two years ago I was diagnosed with an illness called a primary immunodeficiency. This forever changed my life, identity, dreams, and abilities. I am extremely thankful to have a diagnosis finally after years and years of sickness, but, unfortunately, there is still no cure. However, with blood plasma infusion treatments, I have been able to experience a better quality of life at least. After all the steroids and antibiotics, that are now, thankfully, minimized; and I feel like I am becoming a healthiest I can be, despite my illness and limitations. This is what donating blood, whether it be whole, plamsa, etc., does. It saves and changes lives. It's been a lifesaver for me. I think the picture comparison speaks for itself. If you have ever donated blood, THANK YOU from the bottom of my heart. If you haven't and are able, please consider it. It's an invaluable gift that I am so thankful for.

Happy Rare Disease Day!

Happy Rare Disease Day!  Please share to support awareness of people who live every day with a rare disease.  I myself am one of them.  I have a condition called a Primary Immune Deficiency.  For more info, check out the Immune Deficiency Foundation​ at http://primaryimmune.org/.  Thank you!

Did you know that there is no cure for PI?  The standard treatment is immunoglobulin replacement therapy which is IGG antibodies from blood plasma donations.

Want to help?  Donate blood plasma.  There are donation centers all over the United States and the world.  Find the one nearest you at donatingplasma.org.  It is always needed, and usually you are paid a little money for your time.  You can also donate to the Immune Deficiency Foundation (primaryimmune.org) or the Jeffrey Modell Foundation​ (info4pi.org).  Thank you from a person whose life is touched every day by your gift!

In Sickness and Samba

Sometimes life throws us curve balls we never thought we would have to deal with, yet we find ourselves seemingly thrown onto a different path.  After a long journey of on and off illness, having a diagnosis of primary immunodeficiency was only the beginning.  My immune system is partially missing and not working right?  You wonder, how can that be?  I never pictured myself being diagnosed with a disease for which no cure exists.  I never pictures myself being my own nurse and having to give myself blood plasma infusions every six days for the rest of my life, or until a cure exists.  I never pictured myself as a person who would need to spend years on antibiotics to function "normally."  I never pictured myself as a person who has to take a ton of daily medications.  I never wanted to be a sick girl.

At least treatment does exist.  This treatment relies on the generosity of other people.  The thought that blood donors keep me alive and healthy every day of my life is a astounding thought sometimes.  I am touched by the generosity that gives me a chance at a quality of life.

It's funny how perspectives and life goals change when health becomes your main goal, your job.  While I'm never where I want to be, I finally am on a path to where I feel like I can have health, maybe even not require daily antibiotics to prevent an infection, the bane of my existence.  Sure, I can turn to my religion and social network, change my diet, exercise now that I feel better with treatment to have the energy to do so, get more sleep, try not to stress.  The list goes on and on.  However, of all things, one thing has really attached itself to my heart and helped me physically and mentally.  That, of all things I did not expect, was Brazilian Samba.  The music, sure, but, most of all, the dancing is where I have found sanctuary.  It has given me a gift of an outlet, a community, friendship.

What is your Samba?   Find something that you enjoy, that moves you, and stirs you from within.  Don't shelve it and put it on the back burner to get to someday in the future.  Do it now, and do it with all your heart.