This blog entry may sound like a big ol' F YOU and to be perfectly honest, it is. It is not meant for any of my readers or anything, but just to some stupid bitch who happened to ruin something completely magical today. This is my blog, and I have every right to vent my frustrations as they happen. If you somehow happen to stumble upon this and read it (person who bothered me) sucks to be you bitch.
This blog predominantly is about my lungs and bronchiectasis and transplant. Rarely if ever do I talk about SCID - my primary condition that led me to develop bronchiectasis in the first place, but today I'm going to focus on SCID, b/c someone (actually 2 people on 2 separate days) have done or said something to completely ruin and annoy me.
I'll start with yesterday. I went to visit someone ( i feel like i've mentioned this....have i?) yesterday, and they worked with someone who felt that they had a pretty serious immune system and wanted my input on what I think it could be/what could they do to boost their immune system. They told me what their symptoms were (you know, b/c i'm a medical doctor and all, what with my almost degree in ANTHROPOLOGY and all), and how they were sick with colds a lot. She wanted to know what she could eat to boost her immune system (b/c it's that easy evidently) and i said 'garlic' (which is true) but that's about it. I said if she was really worried to ask her doc to write a referral to an immunologist for further testing. She said her doc said her problem wasn't serious enough. She then asked about my IVs and stuff and told me that it wasn't long term. I wanted to smack the shit out of her. If it's not long term, then I guess getting gamma for the last 18 years has been a big mistake on my part. Whatever.
Now on to today's incident. Without being too specific, I will say that there is a support group out there for people with SCID. In it is a thread regarding the issue of frustrations. The biggest frustration with SCID is the common assumption that all of us are "bubble boys". While this image has been shown again and again, I personally find it annoying and rude, b/c it has become a form of mockery instead of a key way to identify the condition. Many people echoed this sentiment, until some angry woman stepped in and called us all ungrateful, saying that we should be thankful that we're alive since her child had gene therapy and died.
While that is unfortunate and I find it sad for her, she really had no right to come in and shit on our parade. The group was created as a place for people afflicted with SCID to come and share experiences, vent frustrations, share fears, and get to know other people living with SCID. It was NOT created so people could play the 'who has it worse' game, and it was not created to generate sympathy. To assume that we are alive with SCID without complications is ignorant and quite frankly, a little immature. I sit here, living with SCID, and things are not all hunky dory. I am waiting for a FUCKING LUNG TRANSPLANT, and for you to come into my group and call us ungrateful for venting frustrations over a term is beyond me. First and for most we are PEOPLE - we should NOT be defined by our disease so expressing disdain and annoyance over an unflattering and miscontrued term is not grounds to call us ungrateful or anything else. To also make other assumptions and claims about medical professionals is uncalled for. This is not the group, nor the time, nor the place. If you have issues, speak to someone who can help you - NOT people trying to get on with their lives just b/c you are an angry human being.
Regardless of it you've survived, or sadly passed on, the place was NOT created to compare whose situation is worse. To tell us we are not thankful for living . Do not tell me how to deal with this - I can honestly say that I have been dealing with this LONGER than anyone.
And do NOT tell me to take a deep breath - b/c I can't.