About the Blog
To start with, let me explain the title of this blog. “Needlin to be Normal” refers to my need for needles. Each week I take a set of 2-4 needles, and I jab em into my skin. For about two hours “medicine”- actually antibodies separated from human plasma suspended in a solution- flow into my fat through those needles, causing a nice big,swollen lump to form. Then I take the needles out, stick a bandaid over the needle-stick and go about my life. One week later I do it all again. I call it my infusion night, aka movie night.
Still confused? Understandable. Here’s the missing piece of the puzzle: I have a primary immunodeficiency. Which in my case, means that although my body produces the right amount of antibodies, it pumps out some seriously messed up ones–so I get sick over and over again with the same things and every little virus leads straight to a bacterial infection. At least, that’s what happened before I developed my weekly needle habit- now with the help of the IG infusions I do much better. Despite my need for needles and my sizable collection of prescription meds, when I leave the house (with my infusion lumps carefully camouflaged) I get to portray the enjoyable part of “average college kid.” Thanks to my infusions, I get to be (almost) normal. Get it?
So that explains the name and a bit what this blog is about, but really this blog is about more than PI or any one illness(and trust me I have a few to choose from)–it’s about trying to live a “normal” life with any chronic illness(es). It’s about wanting to be able to be real about life with less-than-perfect health without the stigma that chronic sufferers so often get stuck with. It’s about showing that you can be sick without being “the sick one”–that your illness doesn’t own you–that my illness doesn’t own me.
Really I’m still figuring it out. I definitely don’t have all the answers. I’m not starting this blog because I think I know it all. I’m starting it because I want to share the adventure of figuring it all out–the ups, the downs, the loop de loops–with others also riding the crazy chronic coaster.
About Primary Immunodeficiency
Primary immunodeficiency diseases (PI) are a group of more than 300 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. While not contagious, these diseases are caused by hereditary or genetic defects, and, although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. Some affect a single part of the immune system; others may affect one or more components of the system.
And while the diseases may differ, they all share one common feature: each results from a defect in one of the functions of the body’s normal immune system. Because one of the most important functions of the normal immune system is to protect us against infection, patients with PI commonly have an increased susceptibility to infection.
The infections may be in the skin, the sinuses, the throat, the ears, the lungs, the brain or spinal cord, or in the urinary or intestinal tracts, and the increased vulnerability to infection may include repeated infections, infections that won’t clear up or unusually severe infections. People with PI live their entire lives more susceptible to infections–enduring recurrent health problems and often developing serious and debilitating illnesses. Fortunately, with proper medical care, many patients live full and independent lives (IDF).
CVID, the most common immunodeficiency is found in about 1 in 25,000
It takes an average of 9-15 years after onset of symptoms to receive diagnosis
A batch of Ig replacement takes 10,000-50,000 plasma donors
Approximately 25,000 Americans have been diagnosed with PI
An estimated 25,000 more have not yet been diagnosed
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Hello there! My name is Miranda. I’m 22 years old and working on my undergrad in English. I love to read, write, run, play and watch basketball, eat copious amounts of chocolate and Netflix it up. I love to learn just about anything (except math), but I’m especially enjoying my major courses and French.
Like many of you, I’m still hoping that some ruddy bird named Errol got lost with my Hogwarts letter. If it does ever find its way to me, I will have absolutely no problem being twice the age of the other first years.
I have a grey and white cat named Annie, who is my best bud despite having an unfortunate habit of stealing and hoarding my hair ties. I also have three beautiful, adorable little nieces who I love more than I previously thought possible. Oh and the rest of my family is ok too.
I’m a medical rarity prone to conditions difficult to diagnose and harder to treat. When I walk into a doctor’s office physicians cower in fear and play hot-potato with my chart–which by now is easily the size of the unabridged Les Miserables (fitting I think). My major diagnoses include: Primary Immunodeficiency (“CVID-like”), Chronic Migraine, Asthma, Gastroparesis, IBS, Allergies, [suspected] Endometriosis, and Generalized Anxiety Disorder.
What does all that mean? It means I plan my spring, summer and winter vacations around doctor’s appointments. It means Friday nights are reserved for infusions. It means I get to bed by 11 on school nights and Saturdays are consumed by school work for the week ahead so I won’t get overwhelmed if I get sick. It means that I have a love-fear relationship with food, and everyday life for that matter, because anything I eat, touch, or breathe can make me sick or cause me pain. Other than that though my life is pretty normal. Kind of. Maybe?
The only thing that defines my life more than my chronic illness is my faith. I’m a member of The Church of Jesus Christ of Latter-day Saints (I’m a Mormon). I love my Savior Jesus Christ and His gospel more than anything. Unlike my illness, my faith is something I choose–I choose it again and again everyday, and will continue to do so for the rest of my life.