Primary Immunodeficiency

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I think I'll take a sick day

I was sick all the time and by all the time I mean for over twenty years if someone sneezed; I got a sinus infection. My stomach and GI issues were legendary, and not in a good way. It was a running joke I was the girl in the bubble because I was always sick with something.

The irony it turns out is I don’t have a functioning immune system, like the boy in the bubble. My immune system is borrowed (thank you plasma donors for sharing!). Because of that, I need to replace it every 28 days. I’m infusing antibodies to fight off infections and viruses. But those wane every month, and I have no control over what antibodies are in that treatment. So if I come across a bug I have to rely on my own body to fight it off if those antibodies weren’t in my infusion. And with an immune system that doesn’t work right…. Well, you get the gist.

So no, I really don’t have an idea of what it’s like to feel good. My good is most likely your 40-50%, and that is the honest truth.

The reality for me is that I don’t get sick days because that would be most days. And who can afford to take that many days off from life? Most can’t. I can’t.

That’s the thing about invisible illness. On the outside we look just like the person next to you in line at Target. But on the inside, we might feel like you do the day after your fever broke and you’re telling people you’re on the upswing but still need naps during the day. But I’m going to work, running our daughter to activities, going to birthday parties or meetings, washing clothes and decorating for the holidays.

When I actually take a sick day, actually stay home from work or hit pause on any one of the day-to-day activities, I’m most likely at your 15-20%. And usually that lasts about a day before I’m back it because there just isn’t the time to take. Life is happening and when you’re never feeling great, life can’t stop.

The thing is sometimes, sometimes when I hit that moment where I must take a knee it’s usually when there is an activity or commitment or event. And I have to cancel. And I feel horrible. For all the reasons you can imagine. And I feel like I need to explain. But it’s hard to explain the whole thing. It doesn’t make sense when I look normal. And you just saw me at the store or a picture of me and my family the other day on social media. But what you didn’t see was that when I got home, I needed to lay down for 20 minutes because it felt like I ran a marathon, or that I was counting down until bedtime so I could get in bed.

Always being sick has been my norm. But not many people really understand what that means. I hope this shed some light into my world. Now if you’ll excuse me, I’m going to take a sick day.

#RareDisease #PrimaryImmunodeficiency #Zebra

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I’m new here!

Hi, my name is Courtney. I'm here because I have common variable immunodeficiency, anxiety, and migraines. Would like some support from people going through the same.

#MightyTogether #Migraine #PrimaryImmunodeficiency #MentalHealth

1 reaction 1 comment

I’m new here!

Hi, my name is EnyoNunnya. I've been diagnosed with Primary Sjogrens for 8yrs

#MightyTogether #PrimaryImmunodeficiency

1 reaction 1 comment

I’m new here!

Hi, my username is corgiville, chosen for one of favorite books by Tasha Tudor. I'm here because I developed mast cell activation syndrome around 2013, which has almost completely paralyzed my intestines and has now started attacking my muscles, leaving me mostly homebound. I just discovered this site and I already feel much less alone than I have for the past 10 years.

#MightyTogether #CommonVariableImmuneDeficiency #PrimaryImmunodeficiency

4 reactions 2 comments
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Always abandoned

Just need somewhere safe to vent.
I’m feeling abandoned by friends. I’m suffering through day 13 of severe covid right now and it just seems to annoy everyone. I have #PrimaryImmunodeficiency along with a few other health issues, so I tried extremely hard to avoid the virus for three years. It finally caught me. I knew I would get very sick, that’s not the surprising part.I’m just let down but the support from certain friends. People I thought would be more concerned or maybe even worried. I’m grateful for those who are, don’t get me wrong. Just still hurts. This is truly just a highlight upon what’s already been an existing fault line in friendships where I’m ignored. I’m the lesser friend because I’m “always ill” or can’t keep up. I can’t go biking or canoeing so I’m just not invited. During the pandemic spike I couldn’t leave my home so I was just left out… occasionally sent a photo of friends together tagged #wishyouhere .
They don’t understand how much it hurts to grieve a life you cannot live. Friends who just leave you behind like garbage. But then again, even the garbage gets to go out once a week.
#CommonVariableImmuneDeficiency #RheumatoidArthritis #Fibromyalgia #ChronicDepression #Anxiety #PTSD

21 reactions 3 comments

Lost my diagnosis #RareDisease #irony #PrimaryImmunodeficiency

Hey guys
It is very frustrating and ironic. On the 28th of February (international Rare Disease Day) I lost my diagnosis of a rare disease. If this isn’t the universe mocking me, I do not know what it is… Sadly this means I will not be able to receive tratement and am on field one again. But luckily other diagnoses have been in discussion…. We‘ll see but for the moment I‘m pretty frustrated. Because I am no longer diagnosed with SAD (Selective Antibody Defficiency) I will try to give this group to someone else.

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215 days left
Immunoglobulins (IV/ Subcutaneous)
preventive antibiotics
frequent vaccinations
other (tell us more in the comments)
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Hello :)

I’m new to this app, I’m hoping to meet people who have similar illnesses and struggles, it’s hard finding anyone who can really understand what it’s like. Adding all my hashtags hoping that I’ll meet people going through the same things I am!if anyone wants to chat shoot me a message :) #ChronicIlless #Gastroparesis #PulmonaryArterialHypertension #PulmonaryHypertension #HeartTransplant #LungTransplant #heartfailure #MastCellActivationDisorder #EhlersDanlosSyndrome #HickmanLine #FeedingTube #Gtube #PrimaryImmunodeficiency

18 reactions 11 comments