Needlin' to be Normal

A blog about living with Primary Immunodeficiency and other chronic illnesses.

[mirandamac25]

COVID-19

Things are getting real, my friends. It hit me this past Thursday, when my university announced that we’d be finishing the semester online. COVID-19 is scary. It’s especially scary for those who are at “high risk”—like me.

And since things are getting real—I’m about to get REAL. This is what I wrote in my journal yesterday:

I am, in theory, afraid of getting the virus, but I honestly can’t…

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[mirandamac25]

Concussion Recovery Stage 1: Coping

Concussion Recovery Stage 1: Coping

The first stage of concussion recovery involves almost total rest. This stage lasts from a couple hours (in the case of an extremely mild concussion) to several weeks; a very rough average for this stage is about one week. I was in this stage for nearly three months.

When it comes to a concussion, resting is an altogether different beast; when you have to rest because you’re sick you sleep,…

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[mirandamac25]

Concussion: An Unexpected Journey

Concussion: An Unexpected Journey

In my last post I talked about flare fear. Well, several months later and I’m happy to report that I haven’t experienced any particularly bad flare ups. In fact, I recently followed up with my Immunologist and we were excited to realize I’d only had two infections since last we met six months previously. A new record!

So good news is, I haven’t flared. Bad news is, I did fall. Literally.

On…

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[mirandamac25]

Flare Fear

I’ve been having a hard time with blogging the last few months. I keep telling myself I need to post, keep setting a day, keep sitting down to write. But every time I open up a new post, the blank screen stares back at me and all the sudden I just can’t. After a while of racking my brain, staring at the screen, and typing and then immediately deleting what I just typed, I’ve inevitably shut my…

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[mirandamac25]

Of Ulcers and Life

Of Ulcers and Life

Hello my friends! I know I’ve been neglecting you and for that I’m sorry. The funny thing is, during the summer I mostly felt crappy, and therefore didn’t feel like blogging. And then so far this fall semester I’ve been feeling pretty great, and so haven’t really felt like blogging…

But here I am. Back again. Like I said, so far this semester I’ve been feeling so good! I’ve only had one sinus…

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[mirandamac25]

ADHD and Sensory Issues: Why Is Everything So Loud?

ADHD and Sensory Issues: Why Is Everything So Loud?

My whole life the world has been rather assaulting. The noise. The lights. The smells. Basically all of it. And I never realized that the way I experience the world is different.

In April I found out that though there are many, many people that experience the same bright, smelly, noisy world I do, it’s not really supposed to be like that. And I found out the reason why I experience the world the…

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[mirandamac25]

Summer Update

Hey all! As you may or may not have noticed, I’ve been taking a break from blogging for most of the summer. In about two weeks the fall semester starts up and I’m excited to get going with my classes. So here’s a recap of my summer:

MAY

Finished spring semester.

GI appointment- started taking acid-reducing meds and stopped taking all NSAIDs on the assumption my abdominal pain= peptic ulcers.

Neur…

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[mirandamac25]

5 Years of Ig Infusions

5 Years of Ig Infusions

Last week I celebrated my 23rd birthday, which is hard to believe I know. The day before my birthday marked five years exactly since I had my first Ig infusion.

I was diagnosed with a primary immunodeficiency towards the end of my senior year of high school, after many years of sickness, infections, tests and endless doctor’s appointments. As I think is typical, it took a while to get insurance…

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[mirandamac25]

Gallbladder Pain, But No Gallbladder...

Gallbladder Pain, But No Gallbladder…

A few months ago I started having episodes of intense abdominal pain, often accompanied by nausea, that were reminiscent of the gallbladder attacks I had last year. The only problem is, obviously, I had my gallbladder removed. So it shouldn’t be hurting…

It Feels Like a Bad Gallbladder, But Doesn’t Act Like It.

This pain was a little bit different than with my gb. There were no consistent food…

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[mirandamac25]

April was Primary Immunodeficiency Awareness Month, but I was so overwhelmed with crazy end-of-semester stuff and crazy body stuff that I totally goofed—I didn’t write a single PI awareness post on my blog about PI. But better late than never right? So let’s talk about it. What is a primary immunodeficiency and what is it not?

What PI is:

A hereditary/genetic defect in the immune system.

A defect occurring in one or more components of the immune system.

A blanket term to describe more than 350 rare, chronic disorders in which part of the immune system is missing or functioning improperly.

Lifelong.

Treatable, but not curable.

  Basically a primary immunodeficiency is a problem with your immune system that you’re born with (although they can develop later in life and often aren’t diagnosed for many years either way).

  What PI is not:

Contagious.

An autoimmune disorder.

Just a “bad” immune system.

Visible.

A defect in the immune system caused by something else—like AIDS or chemotherapy (it’s not “acquired”).

So when someone tells you they have PI don’t get all weird about it. They’re not contagious. Most likely, they’re not dying. Just be cool.

  What having PI means:

Increased susceptibility to contagious illnesses.

Increased susceptibility to infection.

Infections that are recurring, chronic, difficult to clear up, severe, or caused by unusual organisms.

You don’t build immunity from a previous infection (whether viral or bacterial).

You’re a medical zebra—PI is rare, so it’s a “zebra” condition instead of a more common “horse” condition.

Let me explain—no there’s too much. Let me sum up. Having a primary immunodeficiency means you get sick a lot, because your immune system doesn’t work like it should. Since it’s a genetic/hereditary disorder, having PI usually means it either runs in your family, or you’re really lucky and your genes mutated…

To better understand PI it’s important to understand how the immune system is supposed to work

How it Works – The Immune System

There’s two basic parts to the immune system: the innate immune system and the adaptive immune system.

The Innate immune system starts, like all of the cells that make up the immune system, in the bone marrow with a stem cell.  The several types of cells that make up the innate immune response (neutrophils, monocytes, natural killer (NK) cells, complement proteins) are ready to go straight to work once formed. They require no additional training to do their jobs.

In most cases of PI the innate immune response is a-okay. The problem occurs in the adaptive immune response.

The Adaptive immune system also starts in the bone marrow. There they become either  B-cells or T-cells, the two major parts of the adaptive immune sytem. Then they are split up. T-cells go to the Thymus to finish developing and get trained for their jobs as Killer T-cells, Helper T-cells, or Regulatory T-cells—which all basically deal with the body’s adaptive response to foreign substances (ie viruses) and make sure they don’t attack the body’s own tissues (as in autoimmune conditions).

B-cells stay behind and get edumacated in the bone marrow. They mature into Plasma cells, which in turn can mature further into Memory B-cells. Plasma cells are responsible for producing antibodies, which are highly specialized proteins that fit “invaders” like a key in a lock. Memory B-cells remember the invaders that you’ve encountered before so a rapid response can be mounted if you encounter it again.

In a lot of primary immunodeficiencies the main problem is with the B-cells. They don’t mature like they’re supposed to. They don’t pay attention in bone marrow class or just skip it all together. So they don’t make antibodies like they should and they definitely don’t remember past infections. It’s like your adaptive immune army is made up of a bunch of cats—they just do whatever the heck they want, which is usually nothing. So bacteria and viruses waltz in again and again, and even if they’ve gotten in before your cells are perpetually unprepared.

Basically your B-cells look like this:

    So you can see why they might not be super effective…

      What is Primary Immunodeficiency? April was Primary Immunodeficiency Awareness Month, but I was so overwhelmed with crazy end-of-semester stuff and crazy body stuff that I totally goofed—I didn’t write a single PI awareness post on my blog…

[mirandamac25]

ADHD and Me?...Wait What?

ADHD and Me?…Wait What?

So I haven’t written in a while. My bad. But let’s skip ahead because big things are afoot. Well actually we have to skip backward first technically–to January. Over Christmas break I made a resolution: to start seeing our school counselor this semester. I recognized that my anxiety has been really limiting me and overall making life much harder than it needs to be. I further recognized that I…

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It’s Hard Work Being Sick

It’s Hard Work Being Sick

Last month my normally indomitable dad got real sick with a bad chest infection. In the first case, this man who seems to exercise just as much as he sleeps, rarely gets sick. In the second, when he does get sick he usually gets over it real fast. This time that didn’t happen. He had to go on antibiotics and a bronchodilator (which he didn’t use much because it made him feel weird), miss work,…

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[mirandamac25]

Subcutaneous Ig Infusions Part Two: Infusing

Subcutaneous Ig Infusions Part Two: Infusing

Ok so here’s a video (well three technically) of me doing my subq Ig infusion. Below the videos I’ve outlined the steps to doing an at-home infusion. Happy infusing! -I’m not sure why I’m upside down in the freeze frame but once you play the video I stop hanging from the ceiling- https://videopress.com/embed/aB0eEHmE?hd=0&autoPlay=0&permalink=0&loop=0…

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[mirandamac25]

Subcutaneous Ig Infusions Part 1: Supplies

Subcutaneous Ig Infusions Part 1: Supplies

This past week I did my monthly order of my Ig meds (Gamunex-c right now) and supplies. Since I’ve been doing this once a month for nearly five years now, it is totally automatic. I know all the names of the supplies, the amounts I need, the sizes I need, etc. But as I was ordering this week I had a flashback moment as I was mechanically naming off the supplies I need in this month’s shipment to…

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[mirandamac25]

100 Little Things That Make Me Happy

100 Little Things That Make Me Happy

This month has been rough, no doubt about it. It seems to be the winter from hell, as far as germs are concerned. Since the semester started a month ago, I’ve had two separate stomach bugs, a strep and sinus infection combo, and now a cold. And it’s not just me–my family members and schoolmates with normal immune systems have been sick almost as much! So what are we to do? Well we could dwell on…

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[mirandamac25]

The Chronic Illness New Year

The start of a new year is great right? You watch the ball drop, raise a glass, make resolutions–all that good stuff. January first comes around each year and you feel a sense of a fresh start. You look back on the previous year and see how far you’ve come; you look forward into the new year that holds all sorts of possibilities. Great. But for those of us who deal with chronic, significant…

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[mirandamac25]

How Can an Illness be Invisible?

“Invisible illness” is a term you see thrown about a lot these days, but have you ever wondered exactly what it means–how an illness can be “invisible?” Well if so, good. You’re in the right place, cuz I’m about to explain. Or try to at least. See these two good-looking sisters? Pretend for a moment you don’t know which one is me–just by looking at the picture can you tell which sister has an…

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