9.11.11

I'm Seriously Special, Are You?

In the year or so that I've been blogging, I've made a few cryptic references to my medical situation.  I haven't written about it detail because, frankly, it's a depressing and not terribly funny story, but I believe the time has come. Now, I'm no doctor, and this is all from MY perspective, but if you know of someone who has an undiagnosed breathing problem, perhaps my story will be helpful.


So, here I go.


*takes a (theoretical) deep breath*


I live with a disease called Eosinophilial Bronchitis (say that 3 times, fast) and it's most similar to severe asthma. The disease was discovered by my super-smart research doctor, who is the Chair at the Department of Medicine at McMaster University in Hamilton, Ontario. He has so many acronyms after his name that he almost needs double-sided business cards. Dr. Smartypants found that people who died from severe asthma attacks often had an insane amount of eosinophilial cells in their lungs and concluded that the hyper-reproduction of cells played just as large a part in their death as the asthma.


Here's why I'm special: I have the disease without the asthma.


*brushes shoulders off*


So the basic breakdown of the disease is this:


Everyone has eosinophilial cells in their lungs, but for whatever reason, mine are involved in orgies - breeding and multiplying with no end in sight. Normal people's lungs have 2 - 5% of the cells. 


Me? Anywhere from 25 - 35%, depending on the day. The more they multiply, the more they fill up my lungs, making it incredibly difficult to breathe. The only thing that slows down the cells is Prednisone aka The Big P, which is an oral steroid. Not to be confused with steroids associated with GTL-ing. 


*looks at Ronnie*


The side-effects of The Big P are fucking awful. Yeah, I dropped the f-bomb because it's totally appropriate. Besides the anxiousness, lack of sleep, mood swings and weight gain, I've also developed a hump at the base of my neck and a seriously swollen face (I could go on as there are a few other doozies, but I'll stop before it gets mega-depressing). In short, the side-effects of the steroids - both short and long-term - are almost as bad as the disease itself. Boo.


As of now, there's nothing available to make the cells go back to normal. The Big P only slows the hyper-reproduction. That is, unless I get sick with a cold or some other respiratory infection and then they totally bug out, making it necessary for me to take an even higher dose. Double Boo.


Over the last two months, I've been on a stupid-high dose of The Big P (30 - 50mg) without being sick, which is super sucky because it means that I'm getting worse. My most recent trip to my specialist confirmed that's the case. Triple Boo.


There is a drug on the horizon that will hopefully be on the market in a couple of years but I just can't wait any longer. So now, I'm pursuing getting the drug on compassionate grounds (pre-FDA approval). The process is freaking AWFUL and will involve many invasive tests and a few rounds of alternative drugs (including oral chemo) but it may lead to me being able to get my little hands on the drug that would replace The Big P so it's worth it. Plus, I might end up with curly hair after the chemo and that would be awesome as my current locks are as limp as overcooked angel-hair pasta. 


The point of this post, though, is NOT to wallow in an ocean of self-pity. Nope. Not one little bit. I'm WELL aware that things could be MUCH worse. Aside from this problem, my life is quite blessed. 


The real reason I decided to share my diagnosis with all of the internet is because although I know I'm special, I'm not that special (despite what my mother told me). There are definitely people out there who are just as sick as I am and I can GUARANTEE that doctors aren't taking them seriously.


Why, you ask?


Well, I've learned A LOT about doctors and specialists while on my medical magic carpet ride and the biggest surprise of all is a previously unknown (to me) population of...


BIG FAT FAKERS


You heard me. There are some serious nutbags in the world who claim they're sick while being perfectly healthy. That, or they're actually sick but choose to lie about taking their medication properly.


Yeah, I don't get it either.


My biggest hurdle through this whole thing has been that I haven't really looked sick (well, until recently, that is). Sure, I couldn't breathe when I'd roll into an emergency room, but physically, I looked fine. My doctors think it's because I was in pretty great shape pre-sickness, but let me tell you - it's been a HUGE disadvantage because people didn't take my condition seriously (some family and former friends, included). It also wasn't terribly helpful that I'm hilarious and even during my serious flares, would joke with nurses and have The Hubby race me around in a wheelchair. It's become clear during my escapade that sick people who don't look sick or act sick (re: sad, cranky) are grouped in with the fakers. 


This is a bad place to be, but the alternative would mean that I'd never get out of bed, so I stand firm in my decision to constantly search for silver linings. No matter how small. Frankly, since laughter is the best medicine, I'm surprised that more medical practitioners don't get it, but whatevs. 


The only way to diagnose this disease is to have a sputum test, which is basically hocking a loogie into a cup and then analyzing whatever comes up under a microscope. I repeat, this is the ONLY WAY to find out if you have it. I know from experience that the Mayo clinics in the States have access to the testing machine, but for you Canadians, you'd have to go to Hamilton. Specifically, the Firestone Institute for Respiratory Health at St. Joseph's Hospital.


Just tell em that Jennie sent you. I kid, I kid, you need a referral.


(I'm not sure about other countries. Sorry.)



So, if you or anyone you know has been diagnosed as an asthmatic but they don't respond to asthma medication (especially Ventalin) then you might want to shoot them a link to this posting so they can write down my disease. Like I'd expect anyone to actually remember it. 


Just so you don't have to scroll back, it's called:


Eosinophilial Bronchitis (or, if you have asthma already: Eosinophilial Asthma)
.

I'm a huge believer that you are your own best advocate, which is why I decided to reveal my big dark medical secret. Knowledge is power, so pass it on, people! As I mentioned before, this is a new disease that a lot of doctors are just becoming aware of. That is, if they keep on top of reading journal articles (don't even get me started on doctors who don't - how is that allowed?!).


So there you go. Now you know everything. 


As I mosey through the process of compassionate grounds, I'm not sure how much I'll be sharing. I created this blog to help pass the time and focus on much happier topics, but life isn't always bluebirds and popcorn. Bummer, but it's just the way things are sometimes.


All right, enough of the medical crap. I think I've covered what I wanted to. Now it's time for the new episode of The Real Housewives of Hotlanta. I've missed NeNe so much and don't want to be tardy for the party.


*gets glass of white wine, just like Kim*




6 comments:

Julie of Velvet & Shag Vintage said...

Wow, so sorry that you are having to go through all that, Jennie. I'm glad you still have your awesome sense of humor, though, and I will be praying for you to get that miraculous new drug and a cure in the very, very, very near future! Much love to you, Lady.

Heather said...

Your sense of humor is incredible, seriously. I have asthma and I whine about that enough; I can't imagine what you're going through. I'll definitely say a prayer that the FDA sees that you have a need for it.

TriGirl said...

Well that's just shitty. (If you're swearing then I'm gonna swear too :P ) Seriously, I can't imagine being on that dosage of prednisone and for that long. I was on it for a few days and was a super-big weenie about it. I hope you're able to get the new meds and do what they're supposed to. I think humour is how many of us deal with the things we don't know how else to deal with...the medical profession should start to recognize that.

jennie said...

Hey ladies. Thanks so much for your super-awesome words (and prayers - every bit helps!). I felt very vulnerable when the post first went "live," and I'm really grateful for your support. The last thing I want is to come across as a Debbie Downer, so it makes me feel good that I succeeded in NOT doing that.

And TriGirl - "super-big weenie" is still making me laugh :D, so thanks for that!

Beth W said...

Thank you for sharing this! I don't have difficulty breathing, but I do have a medical issue that the doctors here in the States are shrugging shoulders about (and I have also lost friends, who think I'm a faker, as well as jobs, because of it). You are absolutely correct that you're your own best advocate, and have to fight to be heard when something is wrong...but it's worth the fight.

I'm so glad I'm not the only one who has been judged to be faking, because I'm trying to be upbeat and funny even while in the hospital. Like sick people are gray and mean? Psh!

Your sharing this gives me hope that someday the doctors here will figure out, and treat (without Prednisone!) what I have (which is damned inconvenient, but doesn't seem to be life-threatening). And I do dearly hope that your treatment gets approved ASAP!

Joey said...

I just read this. How is it possible that I've been so up my own butt that I had no idea you were going through any of this. I whined and wallowed all the way through all of my medical crap because it was the on,y way I knew how to cope. You are SO much stronger than me. So much stronger. Here's hoping they do what's right and allow you the super drug. I know this us such an old post but I couldn't not say anything. And you know what? It sucks. I know it does. But you've written books now (yay)! Silver lining? Ok maybe not but I tried. <3