#CVID

[gaykneecaps]

does anyone who is immunocompromised have experience with testing super weirdly with covid? i got it for the first time about two weeks ago now, i have CVID and pans, i started to test progressively less positive after about 5 or 6 days and was negative on like wednesday last week and then after 40 minutes the test suddenly showed up positive and ive been getting progressively more positive again? and then i did a test yesterday and it was negative which i figured must just be a faulty test so i did a different type and it was still positive, but ive done another covid test tonight and its negative again.. im getting super confused. i know rebounding is possible if you are on paxlovid but i am not on paxlovid

[lilacsolanum]

I was looking at my own AO3 profile the other day and saw I hadn't published anything since 2021. That made me really sad, even if it's a result of working hard at my voice acting career.

What? You're a VOICE ACTOR? I am! Guess what!

I narrate a series called University of Sorcery, a really fun, fast paced, intriguing magical school series that focuses on characters with disabilities. I co-narrate the series as Emma, a sexy fae sorceress who has Common Variable Immunodeficiency (CVID) and saves the world anyway. Wow does that sound interesting but you don't have money to invest in a series right now? GUESS WHAT! IT'S FREE ON YOUTUBE!

Yes that is the ENTIRE SERIES! And also, this series is part of a larger collective of series called Hidden Legends that crossover! Anyway you should listen. Disabled heroines 5eva

[roxsannel]

Oscar and Emmy Visit Grandma: A travel adventure story about when Grandma watches the pets! Ages 3-8 kindergarten to 2nd grade by Terri Sabol.

Oscar and Emmy's family are going on a cruise, but what will happen to Oscar and Emmy while they are away, what if they are left on their own the whole time? These are the questions being asked, but lucky for Oscar and Emmy, they are going to stay with Grandma!

So off they go in their crate to visit somewhere new, they are both a little scared and so they hide until they feel comfortable, but then the adventures start for both them and Grandma too!

This is a wonderful story which talks about the serious job of pet sitting from the viewpoint of a family member who can't wait to spoil their new visitors. It is educational in a very fun way which anyone will be able to enjoy and understand.

[moonsweetie]

My book #Mississippi is on view at the Pierre Bottineau Library in N.E. Minneapolis through the end of March. It is on display with many other amazing artist books by inspiring artists in our community. If you have a chance, please stop by and see it! #mississippiriver #mnartist #artistbooks #photobooks #photography #womenartist #womenwhophotograph #spoonieartist #cvid #cvidartist #allthroughalenspodcast https://www.instagram.com/p/CpBNpH5JHHP/?igshid=NGJjMDIxMWI=

[thatdoesntsuck]

Primed

So, today’s infusion didn’t go to plan. And that’s cool. I got to spend it with my Bestest Friend ever. We ate Crack Bread and Sour Patch Oreos. We learned how to triumph if these obstacles ever happen again, which is very highly likely. I was much more calm this go round. Setting up was a breeze. I was so proud that I didn’t even refer to the list, I just knew what was needed. Even when there…

[stardustinmyhands]

5/3/24

I now have to coat the ends of my hair in coconut oil. The pool is frying my hair. My face is also dry. Lotion and coconut oil routine daily.

I’m sore today, but able to function. Meds on board of course. Doing laundry right now.

Yesterday I wrote 12 pages in my journal. I guess I had a lot to say.

I’m washing laundry right now. I kinda wanna go swimming but I don’t have the energy for a shower afterwards. That is a big deterrent for me, showering takes a lot of spoons. I work this weekend too, so I have to make sure I have energy for that.

I’m having dry mouth pretty bad lately, I think it’s my new mouthwash. It has alcohol in it. I didn’t read the ingredients, my last one didn’t and didn’t do this to my mouth. So I’m drinking a lot of water, which with my lasix makes me pee even more. It’s only 9:50 am and I���ve peed 5 times already.

I see my pcp on Wednesday and get my ivig on Thursday. I have a list already for my pcp, I need referrals, med refills, on top of what she wants to do. I hope my A1C hasn’t jumped. I will have to go back on meds more than likely. I’ve been eating carbs cause my stomach can handle them with my stomach issues. I will also ask for Zofran, well more of it my gi doctor only gave me 4mg pills, when my normal dose is 8mg.

I still have to call the new hospital I will get my IVIG at and see how the new order is going. I might as well stay at the Phoenix location till I see my immunologist next month. I like those nurses anyway. I’m nervous to go to a new clinic, I have to learn a new hospital layout, new nurses. Hopefully it’s as comfortable as the Phoenix location. All that is nerve wracking to someone who doesn’t like change

Some days I wish I could have a normal life. A full time job in the career I trained in, making $40 an hour. With a kids. Of all the things I had to give up cause of my condition being a mom is the biggest one. My OBGYN told me I would be high risk right from the start. With my autoimmune condition, my autoimmune system may attack my baby. But they would do whatever they could to keep me and the baby safe. They also told I would be an automatic c section at 37 weeks. My psychiatrist told me he wouldn’t even want me to get pregnant with my mood stabilizer in my system, cause it can cause fetal abnormalities. And I may have to consider termination, even if it’s a wanted baby. I also take methotrexate every week, which can cause abortions. Which here in Az is now illegal, except in certain cases. I tried to get pregnant, but it never happened. I did get pregnant when I was 18, and had a miscarriage. I had a dream I gave birth to a son, I took a test that morning and I was pregnant. So I knew it was a boy. His name would have been Ezra. Ultimately I guess it works for the best I never became pregnant, even though I have wishes for it since I was a little girl.

[beatuybrutality]

Watching your mother slowly die of genetic conditions you inherited because of her poor choices is like being given a Choose Your Own Adventure book where there is only one ending but you have been given the hints that give you extra chapters. And every second of every day you have to weigh how the trauma of her illness has effected everyone she loves vs. Making the time you have enjoyable.

Do you live your life as enjoyable as possible and inflict that same trauma on others, or try and make all the right choices and suffer constantly but get an extra 10-20 years.

[nezumiko]

When I had to go on disability long term, I made it a rule for myself that unless I was actively sick with something acute like a cold or the flu, I had to change out of pajamas and into day clothes every day. It really helped me feel like I could go on with my new disabled life. It’s a habit I still stick to.

Not to sound like a 90s shallow prep, but how you dress can affect your self esteem, and putting energy into wearing things you actively like and projecting an ideal of yourself through fashion instead of seeing clothes as things you have to put on out of obligation helps.

It also can give you a sense of control over your appearance that you otherwise wouldn’t have lmao

[drpedi07]

Common Variable Immunodeficiency (CVID)

Common variable immunodeficiency (CVID) is a primary Immunodeficiency in which patients have low levels of serum immunoglobulins (antibodies) and an increase susceptibility to infections.

[sculkcensor]

having a rare disease is really nothing but a quick ticket to recieving a hundred 'join our healthcare study' letters and emails every year

[costis]

All those posts that are like "your life doesn't really start til your 30s-40s-50s" are wonderful and important but they make me sad so. Positivity post for anyone who's not going to get there.

People who have been told they won't make it til their 20s, 30s, 40s, whenever. Another month, another year, another five years, another ten or twenty. People who have known since they were little, people who just found out. People who are getting worse faster or slower. People who are in treatments that might help, but cause so much other damage. People who treatment didn't work for people who can't afford treatment. People who are medically fragile and people who are housebound and people who are bedbound. People who are losing their independence and people who have never had it. People who never know which infection, which flare-up, which episode is going to be the last one. People who are in hospice, people who have planned their funerals and written their wills and got their DNR in order. People who have tried everything they can and people who are making themselves worse and people who are being neglected by doctors and caregivers. People with genetic diseases that have taken family members already. Cheers 🧃🧃

[b1odeuwed]

reblog for more data

[roxsannel]

G is for Gossamer: A Children's SMART & SOPHISTICATED ABC's Book by Miss Whitaker.

This is an ABC book, but not as you know it, the pictures are whimsical and full of details, while the words themselves are more advanced and eclectic, but still exciting to learn.

Both adults and children will gain from reading this book, and with the definitions being given at the back as well, it is a great all rounder.

[moonsweetie]

Top of the waterfall 📷 Mamiya C330 with 135mm lens 🎞 Kodak Gold 200 🧪 ECN2 kit from @conspiracy.of.cartographers Custer State Park, South Dakota June 2022 #kodakgold200 #kodakgold #kodakfilm #mamiyac330 #womenwhophotograph #womenwhoshootfilm #allthroughalenspodcast #polapals #filmisforever #cvidartist #spoonieartist #womenphotographer #cvid #postaphotoeveryday https://www.instagram.com/p/Cm2V2hLJJJf/?igshid=NGJjMDIxMWI=

[wettestwraith]

Here's a clip of Ironmouse's singing, honestly the fact that Ironmouse is able to sing like this while having a condition that affects her voice kinda put the idea in my head that 'hey I am physically abled and always wanted to be better at singing... I should try taking some singing lessons'

[bizarrebazaar13]

the question of how strong Dexter is is actually kind of hard to answer. he’s a very physically active person, both for his job and because he enjoys it, when he’s healthy. but he’s also frequently ill. not always to the point where he has to stay in bed for multiple days, but being sick does obviously limit your strength and endurance even if you aren’t bedridden.

and then there’s the question of what being healthy actually means. being a little bit sick all the time is kind of his baseline. being not sick at all is amazing but very rare. so measuring himself against those days is neither fair nor accurate. on an average day, I’d still say he’s pretty strong! but I think that question of “how much better could I be if I wasn’t constantly sick?” does linger in his mind.