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 went to get my infusion this morning as I have been for the last 2 years, and guess what!? THE DOOR WAS LOCKED AND THEY TOLD US TO GO PICK UP OUR RECORDS!!!! They ACTUALLY CANNOT PAY THEIR RENT SO THEY WENT OUT OF BUSINESS!!! I had no clue, NOBODY TOLD ME ANYTHING, LAST TIME I WAS IN THE NURSES AND STAFF WERE ALL FRIENDLY, SO NOW I AM SOOL. Ya think they would have given me a heads up!!! So now I gotta figure out what I'm going to do. THINK POSITIVE, THINK POSITIVE THINK POSITIVE. OH YIPPEE. Stimpy
I am sorry about assuming that you were going the subcutaeous route. Infusions at home are working well for you and that is more than great. It is not something that my insurance will consider without me paying extra, quite a bit extra in fact. But the thing is, I have come to enjoy my experience at my small infusion center here in Austin.
It gives me one on one time with my doctor who goes over all my numbers with me, does a full exam and answers all my questions. I sure I am repetitive, but he just ignores that and goes along with the flow. I have become attached to him and to me infusion nurse. All in all, I come out feeling smarter and 'special'. I don't understand that completely, but I think it's got something to do with the other patients I meet there. Sometimes we all chat and bond, and sometimes we just respect the silence. I wish I could articulate it better, but it just works for me in ways that can't be explained.
There may come a time when home infusions might be what I need who knows. But, for now this is right for me in ways that I did not expect. Since I am alone, bonding with others with the same monkey on their back is healing in a way.
I don't believe that you intend to be condescending or that you are condescending. I think that are a very confident man who has been through allot of experience with CVID. Your confidence sometimes can be confused with arrogance. I can only speak for myself but I felt like you were trying to help Stimpy, but what he probably needed at that point was a bit of affirmation and sympathy. From my point of view it felt a little like, get over it and do what I do.
I see you as a very successful and probably powerful man. That is good. Once in awhile it helps to see the soft, underside. We all do have something in common that most of us have fear of. I never see that from you and if makes me feel stupid. you know...
Maybe you have expressed vulnerablity and I haven't seen it, and for that I am sorry. I like you and think that you are so important to our community. You have lots of experience and can offer assistance to those of us having to find our way through the more technical side of things. And I will turn to you for that.
Only speaking for myself, I wish if you ever has a shitty, down day that you might share that as well. Some of us are just not as well as you are, and you probably need to remember that a little bit more.
thank you for listening. I hope that I have not mis-stated anything, and I would not want to make you fell bad in any way. Just add a dash of empathy and kindness.
fezzy.