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.
I had an interesting experience yesturday! I made the legal documents for my Advanced Directive with my family. I am 20 but have been very severely effected with this condition in my lungs, GI, heart, etc. It's just bound to happen at some point that I get really sick and have to take bigger measures to turn it around. Anyways, what I didn't realize is the huge difference in view points that I have as the patient, and my family has as outsiders. My sense of humor can be a bit crude and it was offensive to them. An example is on the death topic, I gave boundaries for how long things can go on if life support occurs..etc. and I made a comment along the lines of "pull the tube at that point, donate me to science, and feed me to the sharks so theres a purpose for my body." What they wanted was to do anything and everything and let me stay on life support until I'm fixed. It doesn't work that way, and in my opinion is selfish as a family member to allow that suffering and quality of life to drag. They also don't like my commentation on things, told me I'm wreckless and selfish for MY decisions. No I don't wear a mask around anybody that coughs or sneezes. But I don't neglect my treatment. I'm a full time student, working and paying bills, and I somehow still amange my appointments, medications, and 4-6 hours of lung therapy everyday. I never skip my scheduled treatments and meds because I know I need them, and therefore everything I do has to revolve around therapy and my health. On the mask issue, I refuse to live in a bubble. In all areas I would rather live full and short, than loong and sheltered. If that makes me stupid, ok. Anyways, any experiences or thoughts? Sorry if this was offensive to any of you. I take things seriously, but don't want to be upset and afraid of this disease forever! That's just how I am! Thanks:)
Regarding your family not liking your joke or decisions about your Advance Directive, that I think is just a lack of understanding on their part. They don't want to let go of their kid.
I, really liked your joke.
When I wrote my Advance Directive, I purposely left my family out of it and let a good friend be in charge. I didn't think my family could be objective enough to carry out my 'Pull the Plug' order.
My Directive actually states that before administering the Morphine once the plug is pulled, to please give me a good dose of Dilaudid as it is the only drug I never tried as a teenager, then load me up with the Morphine :)
You were wise to draw up your Advance Directive, It feels better to me to make jokes about these things..(.donate MY body to science? Sure, my feet still work)..then to be to serious all the time.
Maybe outsiders won't understand the jokes, but if you can't have a little fun here, where else can you?
:)
LuLu
*This is my opinion. Like gliderlove, I had no intention of offending anyone.
When I was a late teen my grandmother would take me around the house every summer I visited. She'd carry a roll of masking tape and a Sharpy. Then she'd proceed to ask,"Would you like to have this when I'm gone," while holding up an object. At first I was sooo uncomfortable. I kept saying, "But Grandma, you're not anywhere near dying." and she kept reminding me we all die--and the very last thing she wanted was to have anyone arguing or unable to make decisions about where her and my grandfather's possessions went. And it's true. When they had both passed on, I have some very meaningful things of theirs to remember them by. But, like I said...the process for me was scary at first and took me a while to feel comfortable with (many summers!).
It's easier to think of ourselves leaving then letting someone else go.
I have this crazy lung disease and talk about it pretty openly. I don't let it rule my life though. I do NOT wear a mask (I have been told by docs that they are useless), I shop, go to movies, go out to eat, etc. I am also very frank about the fact that I have an expiration date. This makes people very uncomfortable and feel the need to tell me to be positive, you never know what will happen, etc. I am not all torn up about it, very matter of factly made up my will, advance health care directive, let my daughter get a dog because frankly that dog will outlive me and be there to console her, etc. I just want to LIVE, whether its for a 10 days or 10 years, I will live by my terms, not in a bubble and with a positive outlook on the time I have left.