I am a mother, grandmother, daughter, sibling, and aunt to the very people that I struggle to live FOR. Depending on the day of the week, you probably would have no idea what physical, emotional, or mental battle I am fighting. One does not “see” physically, as one would if I were an amputee, or balding from treatment. I have what are coined, Invisible Illnesses. Sometimes, I look perfectly normal, (hah)!! I also have a genetic, rare, and incurable disease called Common Variable Immune Deficiency (CVID). CVID Is A specific type of a Primary Immune Deficiency (PI)…….don’t want to lose you. Remember the “Boy Who Lived in a Bubble” or the film starring John Travola, Bubble Boy? That’s it. Now you have an idea of what I’m talking about.
The focus is also specific to Invisible Illnesses. Long before the official CVID diagnosis came. I was, and am, the poster child of Invisible Illnesses. Most invisible illnesses are considered autoimmune diseases. Basically, the immune system goes haywire, and attacks itself. I live constantly with these “invisible illnesses” and feel that these conditions that run amok in our bodies deserve an educated and personal perspective from the patients point of view. Including personal and research based testaments of treatments that work, or the new miracle supplement….that’s a waste of cash. The symptoms of each invisible illness, and the interaction, as a whole and the toll it takes daily on our lives. The entire gammaut! If you have read this far….your probably searching for answers. I did, and I still do.
Paramount, the last form of stress needed, is not being able to trust those with our health, our lifestyles, our access to care. Unfortunately, many like me, have learned the hard way that putting our trust in our health concerns, in others hands, is not always wise. In fact, blind trust is quite honestly, a ticking time bomb. When the bomb goes off, its YOUR life. Those who love you will be the ones hurt. Always RESEARCH first! To many are growing wealthy off of our suffering. This public downplaying, complete omission, or denying or minimizing facts to the patient populations they purport to advocate is happening. This will continue to occur, when Patients don’t have access to the truth. Truth empowers. The facts will help you gain knowledge, to be proactive. Make wise decisions, minimize stress, and focus on your personal quality of life.
Okay, I’ve heard it before, people want to believe in something, for hope. PLEASE! Will that figure of Hope be with you at the end? The answer is NO. Unless, your HOPE is a higher spiritual power of your personal beliefs, ttthen yes as well as your loved ones.
Believe in yourself, the bonds of your loved ones. I’ll address facts. The reader makes an informed decision. The decision ultimatly is that we have to live in our own skin. Believe in half truths, then deal with the consequences. Or be proactive, sort the fact from fiction. Acknowledge what consequences may occur, knowing you have made an educated decision regarding your health, to the best of your ability.
I, like many others, need more information; In regard to our humane rights as individuals that have CVID and or Invisible Illnesses. That stated, so common with others, is quite the opposite for myself.
Diagnosed later in life, changed everything about the way that I live. It is very strange, when you have to learn a whole new way of existing. The experiences encountered, lessons learned, and reflecting upon it all, has made me stronger, in many ways. Who I was pre diagnosis, compared to who I am now, are the same. Only stronger, wiser, and my passion for humanity, equality, and our right for survival surpasses all. Ultimately, my pre and post CVID diagnosis traits have intertwined, goals and focus have taken a new direction, fact from fiction are defined, empowering patients to advocate for themselves to improve their quality of life through patient unity.
Primary Immune Patients United
For People Who Deserve More