Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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deleted_user 07/18/2011

and not driving your loved ones insane.......
i was at my infusion the other day and decided there are some crazy cvid'er out there and i decided to make it my misson NOT to be one.... as one patient kept everyone hostage and i do mean hostage in the waiting room retelling EVERY ache and pain she and her brother, mother, sister, ex husband, father had for the last 20 yrs....she left no stone unturned and unless one wanted to be downright rude and walk out of the waiting room and miss hearing our name called so we coud escape the onslot...we were hostage....it started me thinking....
people with a chronic disease usually wake up each morning and could find at least 6 things to go to the doc about daily and when we do go we have to list the top 1 or 2 things bothering us that day....
so again i starting thinking ...if any of you have read the harry potter series...in the second book.....harry is trying to be nice to the "house ghost" and he gets himself and his friends ron and hermonie invited to the ghost's "deathday" party....at the party the food was miserable the music miserable all the ghosts thought it was the best but the living were bored beyond belief......so i translated this to living with a chronic disease..... when someone asks how are you they really dont want a detailed account of every doctor appt and ache pain and illnesss since the last time they saw you.....they just want a brief update....my husband usually asks me every morning how you feeling esp if he knows i have had a bad day the previous day.....on my bad days.....my reply not my best day...but not my worst...i equate my worst day with 104.7 temp throwing my guts up unable to get out of bed...if i am better than that...it is not my worse day...and i have found i dont have to tell my family 100 times a day that i feel like crap i allow 1 time to say excatly how i do feel and the rest of the time my answer is not my best day or not my worst day.....do they really need a play by play..if they are our family they probably know excatly how you are by looking at you....you really dont have to tell them 100 times a day.....if they dont then you need to get a new family!!!!! and i love when i havent seen someone in awhile and they tell me you look good....then i know i am a great actor and many days i deserve an academy award for my performance....
everday is what we make of it......if we make it a crappy day it will be...if we think it is the best day of our life...it will be.....
anyway just my thoughts for the day.....

deleted_user 07/18/2011

Great post pcon :) I was just talking with Eliza last night about how a positive attitude is key.
My illnesses are the way I drive my loved ones insane (except for poking my brothers with my finger pricker)...i have other ways ;)

deleted_user 07/18/2011

Love your post. I read a phrase the other day "Stop saying you can't. The unconscious mind has no sense of humor". I noticed a huge change on my aches, pains, joint swelling, etc after I stopped telling myself "Oh I feel so bad, I am so sick" and started telling myself "I am well, I will be healthy, I will be pain free" It was a radical change in my well being with just this small change in mindset. It came after several months of doing so, but here I am, full force, better than ever. God bless.

kelli1b 07/18/2011

One of my friends who helped me along in the beginning uses a number system with his family and friends...like a scale. That way they can just ask how he is and with a single digit number they know exactly how bad it is....i don't think we sickies should dump our buckets on our normals lol if that makes any sense...thumbs up to everything you posted :)

deleted_user 07/19/2011

Great points, Pcon! I try to use humor, especially if a coworker asks. One time, before I knew I had CVID, a coworker asked me how I was feeling. I responded "Nothing that the blood of a few thousand virgins won't fix". Hmmm, I didn't realize how close to the truth I was (except for the virgin part of course) ! :-)

markincleveland 07/20/2011

Good post . . .my philosophy is that no one wants to hear about YOUR illnesses. The more I am able to live as "normal" a life as I am able, the better everyone around me will be.

deleted_user 07/20/2011

My mom tells me I complain too little, and then end up getting myself worse because she didn't know I was sick. lol.

markincleveland 07/21/2011

Faith, I generally hear that is a male thing . .

deleted_user 07/21/2011

What, not complaining enough? haha! I'm getting better about saying "hey, I think something's up. I feel crappy." but i just don't want to call more attention to my self/my health than already is.

deleted_user 07/22/2011

I really like all your replys way to go pcon yeah I'v really learned that being mad about something or complaining does not help it just makes ppl see you in a bad way.....why be seen as a gumpy sick person that no one wants to be around....or that wont stop complaining about whats wrong with your day....we are always going to have things wrong with are day...but the ppl that love us are going to know that...the ppl that dont care we dont need around us any way and thats what you have to remember

TinaMichelle 07/26/2011

Thank you, Pcon, for this post. This has been a hard one for me. I usually isolate when I feel bad--and I am alone a lot of the time anyway. So, I tend to dump on Michael, especially when I see a doctor and come home with yet another diagnosis for something else that has gone wrong. It has taken me a long time to figure out that complaining does nothing to help the situation.

Happened today: I was at the dentist's office and the assistant asked me to tell her about any new physical issues or medications since the last visit. I literally burst out laughing! I finally said, "I have CVID--you don't have enough paper! Steroids--just say steroids..." And she started laughing, too. When the dentist came in, she said, "At least she is having a good hair day today--that's all that matters." Humor helps...

TinaMichelle 07/26/2011

I even find it difficult to speak to doctors. There are so many things happening and everything is connected. What I do now is this: I created a one-page bulleted list of medical history, medications, and major symptoms--it is really easy to scan and it takes far less time for a doctor to read that than to hear me try to explain. It really helps. They can keep it in my records, I feel heard, they have not had to "hear me out" and get overwhelmed...

At least I do not hand that sheet out to friends. LOL

deleted_user 07/27/2011

Tina, what a wonderful idea!! My mom had something like that for me when I was little, but that was A) more for her own reference and B) hasn't been updated in about 5 years and I've developed different problems/symptoms/medicines since then. I think we should work on another one! :)

deleted_user 07/27/2011

In case you don't already do this, I also like to keep a laminated card with all of my current medications on it - 1) so I dont forget anything, and 2) in case I am nonresponsive. Sometimes it feels like I have to update it every week, but it's worth it!

TinaMichelle 07/27/2011

I keep a card with all of my meds on it and keep it in my wallet--I like the idea of laminating it, though. Excellent idea!!

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