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.
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.....
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.....
My illnesses are the way I drive my loved ones insane (except for poking my brothers with my finger pricker)...i have other ways ;)
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...
At least I do not hand that sheet out to friends. LOL