My Double Lung Transplant

Thursday, April 10, 2008

Frustrated

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.

That's it.

4 comments:

Katlyn said...

Very nicely written Bree

Alice said...

Fabulous closing sentence...

Anonymous said...

Hi there, long time reader first time commentor: I definatly feel for you and understand your anger about the whole people playing who is the sickest game. Its something I myself wish to come last place in. Its interesting to that so many people just have to top everyone else even at the worst thing.

Anyway I have been enjoying your blogs, I have my own conditions and reading your blog is great (not the general fact you are sick though) but I love you cander about living with a chronic disease and you often seem to be saying what I am feeling so I definatly don;t feel so alone hal the time.

I am sory if this seems weird out of the blue and ill written, I am not feeling well and have insomnia but felt compelled to write.

Wishing you many better days - Kira
www.caringbridge.org/visit/kiram

DutchMoeder said...

I too am a first time reader of your blog.

I have CVID and Selective IgA deficiency (Stupid name for it if you ask me. I'm completely deficient in IgA) and I have dealt with BOTH of these full of shit people.

I've been getting IVIG for almost 7 years now and you'd believe how often people have said "Well at least you'll grow out of it." What? Since when? I guess people are only ignorant because they don't want to think something so lousy is so permanent.

And yeah there are some "My diseases are worse than yours!" people I'd like to stab sometimes. I spend time on the Primary Immune Deficiency Forum but I'm still looking for a more active community. Is yours only for SCID?

Good luck on your lung transplant. I thank my lucky stars that I just get shit taken out and have never had the dubious honor of receiving somones something :)

Don't let anyone rain on your parade. Blind them with sunshine a buttercups lol

Amanda