#pidd

Waking up alone was a usual occurrence for Pickle Inspector. His mornings were actually normally held to a very strict routine. He woke up, he drank water, he took his medication, took a shower, and got dressed. It was easy to establish a habit like that, he thought most people had to have some kind of waking ritual that they underwent when they got up on their best days. At least for him, breaking it was something negative, an early sign he often failed to perceive. Today, though, on this morning, that was not the case.

This morning, he woke under a heavy arm, he woke up warm underneath blankets he didn't recognize the texture of. The room was dark, the curtains were thick, dark red rectangles illuminated by some mystery source behind them. The person behind him breathed steadily, easily. Of course, he knew who it was. He didn't need to look at the partially-concealed diamond tattoo to figure it out. He didn't usually wake up with anyone else in bed, much less in anyone else's bed, but when he did, it was always the same man.

Pickle Inspector writhed underneath the weight of Diamonds Droog's arm, strong and heavy as it was. For his part, Droog didn't even stir. Inspector took the sign, they'd both been heavily intoxicated when they'd fallen asleep. They'd fallen asleep in their suits this time, but it seemed they'd taken the time to shirk ties and coats and perhaps even empty pockets. Attention cast to the tangle of legs between the two of them revealed no shoes, Droog had taken his socks off and the good Inspector had not.

He stopped struggling to try to free his legs and simply settled into the warmth. He was incredibly unnerved by knowing where none of his belongings were. He trusted Diamonds not to steal from him, of course, the man had no reason to, but he did worry about having dropped his keys or wallet on his way here. He remembered when Droog walked into the bar he'd been at, already fairly inebriated. The man walked over and sat down, he'd smiled at Inspector and told the bartender to bring them both two more doubles of whatever he'd been drinking. He'd been grateful for every single shot.

His body began to feel heavy again, tired. He decided to rest his eyes and try to piece together more of the evening. More shots and lots of quiet conversations about passing jobs, whispered gossip. It was fun. He did remember wandering to the bathroom, but the rest of the night was fuzzy. And to some degree, that was okay. Just like this little break from his routine.

Diamonds Droog shifted and pulled him closer, holding him even more securely against his body than before. He let out a breath and his muscles relaxed again relatively quickly, but Pickle Inspector knew it'd be a few minutes before his host drifted back into a restful slumber. It was in his best interest simply get comfortable and close his eyes again, too. He was sure that he could stand to sleep for a few hours longer. And if he couldn't, that was a problem for his future self, who would have to be thankful for the extra rest in such an unusually safe place.

Hi! I’m temporarily coming out of Hiatus and I’m trying to raise some money for a cause while I do so! I have one of the many genetic disorders that are considered part of Primary Immune Deficiency Disorder (PIDD). 

The IDF (Immune Deficiency Foundation) is an organization that does a lot of good for people like me who have this issue - and with COVID, this is especially important! 

They’re hosting a virtual walk to raise money, and I’m going to be doing commissions for anyone who donates! For every 1 USD (rates for other currency can be negotiated) I will write 100 words on any subject for you! So, $5 gets you 500 words!

Here’s the link for donating - please message me here or on Twitter @yastaghr with a pic showing how much you donated and what you want me to write!

by  Joanna Tierno

I live with a primary immunodeficiency. Here are some ways you can support a friend who lives with this condition.

1) Learn all you can about primary immune deficiency.

Research, ask questions or even ask to tag along on a medical visit. Primary immunodeficiency foundations, such as the Immune Deficiency Foundation or Jeffrey Modell Foundation, provide a wealth of knowledge for family members as well. It’d be good to know the basics about the condition. I have to say, it’s upsetting when people I have known for decades still can’t name or describe what I have. Primary immunodeficiency diseases can also run in families, so knowing your loved one’s medical history could one day be important to your own health.

2) Respect the patient’s restrictions.

Just as you shouldn’t force ice cream cake on someone with diabetes, don’t try to force a high-risk situation on an immune compromised patient. Unfortunately, primary immunodeficiency diseases are not preventable. We did not choose or cause our disease. It’s easy to get frustrated when there are so many rules about our disease, but in order to stay well, we need to respect them.

3) Think before you post.

During the coronavirus pandemic, it has become fairly commonplace for people to post or say things like “Don’t worry, only people with weak immune systems will die from COVID-19.” As you may imagine, that isn’t very well received by someone living with a chronic illness. We want and deserve to survive just as much as everyone else.

4) Trust our experience.

When part of your body does not work properly, it forces you to learn more about it than you ever would if you were healthy. Most of the time, we are more than happy to share what our experience has taught us.

5) Sometimes we need you to speak up for us.

It is so hard always being the “bad guy” who has to remind people about the facts of infectious disease or of the reality of our condition. It can be a huge relief when someone else does the explaining for us, or when you can help us avoid a stressful or awkward situation altogether.

6) Just listen.

“Primary immunodeficiency diseases (PI) are a group of more than 350 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly.” - Immune Deficiency Foundation

uh

by Susan Alynne

Among the CVID patient community and advocacy organizations, many agree that a lack of awareness prolongs CVID diagnosis. In 2017 I found out that I was born with Common Variable Immunodeficiency. CVID is a genetic Immune system disorder in which there are low levels of antibodies to fight off infections.

The “variable” in its name refers to the wide variety of symptoms and their severity found in patients. This makes it extremely difficult for doctors to diagnose and potential patients to recognize. Although awareness is on the rise in part because of the efforts of organizations like The Immune Deficiency Foundation and The Jeffrey Modell Foundation, there are still many doctors and people in general who are unfamiliar with Primary Immunodeficiencies and CVID in particular.

My Own Prolonged CVID Diagnosis Despite Numerous Warning Signs

For example, I wasn’t diagnosed until I was 41 even though I was often sick, seemingly without explanation, throughout my life. (You can read my diagnosis story here!) Case in point, I had never heard of CVID when I was diagnosed (neither had any of my friends or family!).

Below were some of the CVID symptoms I experienced:

Unexplained failure to thrive and hospitalization at just a few months old

Frequent Colds

Recurrent Tonsillitis

Repeated Swollen Lymph Nodes in my neck

Stomach Pain and digestion issues

Headaches

Recurrent Strep Throat

Numerous Urinary Tract and Bladder Infections which eventually required a nerve stimulator implanted in my back to allow the bladder to fully empty

Unexplained internal infection of C-section incision

Closer to my diagnosis, I experienced extreme fatigue, weight loss and body pain that confined me to my bed most days.

Why did the many, many doctors I saw throughout my childhood and the ones I consulted as an adult miss the underlying cause of so much illness?

Probably for numerous reasons.

Maybe my parents (and later I) did not provide a comprehensive enough look at my health history. Perhaps each doctor focused on doing what they could to treat my symptoms and provide quick relief. It could have been that the doctors I saw were not familiar with CVID. Whatever the reasons, we (i.e. me, my doctors) missed the clues.

Spreading Awareness Can Prevent a Prolonged CVID Diagnosis

Now that I know about and have CVID, I feel a great responsibility to spread awareness. With awareness, doctors can provide faster diagnosis of CVID and those with similar symptoms might recognize their story in mine.

Now it’s your turn!

Click here to download the Jeffrey Modell Foundation’s 10 Warning Signs of Primary Immunodeficiency and post to spread the word!

ABOUT THE AUTHOR

by Joanna Tierno

Since primary immune deficiencies (PI) are an “invisible” disability, it’s hard to see what I go through on a daily basis. So here’s a glimpse of what you can’t see about my life as I manage my chronic illness. 

 1. It’s exhausting.

It’s hard to describe fatigue that comes from a systemic disease. But if you think of the last time you were sick — that is what it can feel like to live with a disease like PI where your immune system is always struggling and never exactly “normal.” Imagine feeling like that every day. Then imagine you have more – not less to do – than everyone else to maintain your health. This includes infusions, medications, treatments, appointments, insurance issues and research. And I am never actually ever “done” with these things.

2. I am usually in pain.

I do a lot to manage my pain so I can stay functional, including using a Quell device numerous times a day. I do not sit or stand too long, and I avoid muscle strain. I take medications to prevent migraines. I use ice every day to reduce inflammation. Still, I always have some level of pain. Sometimes before my infusions, if my levels are low, my knees hurt really bad.

3. It takes a lot of discipline.

I eat what I am supposed to, when I am supposed to. I separate the medications that need to be separated throughout the day. I apply my topical medications twice a day and avoid the sun. I get my infusions every week on time. I avoid crowded indoor places during flu season. My day is structured around my illnesses and it takes a lot of discipline to follow all the rules all the time. Sometimes I want some dairy with my medication, or some high noon sunlight. I would love to go wherever I wanted without fear of getting sick.

4. My body doesn’t always cooperate.

It’s not uncommon for me to end a sentence involving any plans I make with: “As long as I am feeling OK.”  Actually, most plans I make with anyone do end this way. I never actually know how I will feel or what I can or can’t do until the actual day of the event. With any plan I make, I am secretly hoping I can keep my word. I never really know when a migraine, illness or just plain fatigue will kick in.

5. It can be lonely, scary and frustrating.

The winters are the worst. I spend a lot more time home alone afraid of catching a cold or flu. I want to get out and do things, and it can be super frustrating to pass up important opportunities or events I would like to attend because I am immune compromised and there are too many infections going around. It’s hard to always feel like you are missing out, or in some cases, missing friends and loved ones very much. You also don’t know fear until you have a rare disease. Just imagine not trusting that anyone, anywhere actually knows how to help you. Imagine there is little to no research for what you have. It is a lonely and scary situation to be in. I am so lucky to have a treatment for my primary immune deficiency disease; most rare conditions do not have an FDA-approved treatment. Mine is plasma derived, so there are shortages sometimes. It’s also extremely expensive. Indeed, there is a lot you can worry about.

6. It takes extraordinary courage to do “normal” everyday things.

Attending a function, or not running for the door when someone is sick is not easy for me. Even going to a doctor’s visit can take courage when you don’t know what germs are lurking in the waiting room and whether or not the appointment is going to get you sick. Visiting a school or hospital is another simple act that takes courage because of all the germs that can be there.

7. I carry with me the story of every friend I have lost to this disease.