Saturday, May 2, 2009

I am having a lot of trouble breathing

The only thing that works is what is left of my last old aerosol inhaler, rapidly depleting. The new one does not stop my cough or my gasping for air. I get a bad headache first and my chest makes horrible squeaking noises; don't know what would happen next.

I just love the suggestion that we go to the ER so they can gather real evidence on how much we need the old inhalers. Maybe some of us wouldn't survive the trip. Last time I was there, I almost didn't survive the triage--a security guard told the idiots that a lady who had been forced to wait too long finally passed out. Not to mention the costs to the patients (even insured have deductibles and copays) and to society with the ER being an extremely expensive form of health care delivery.

It's also the last place we immunosuppressed want to be. Where all the nastiest germs gather together in one place.

Was I helping to cause global climate change when using the effective inhaler? I swallowed all of the aerosol, I thought! Funny that so many gross polluters are still out there, while asthma patients gasp for breath... Not that the drug companies could possibly have anything to do with it, with the new inhalers being much pricier...

I seriously think lupus and Sjogren's have done some stuff to my lungs as well, but that's another story.

I've been very concerned about the environment, global climate change, been accused of being a "tree hugger", etc. I'm actually surprised that I'm now on the side of the aerosols! For this one purpose, that is...I would not survive an alternative which meant high-dose oral steroids for long periods since I get such horrific side effects to them. I don't know what they will do with me. The first step is making sure docs BELIEVE me...I need to get witnesses!

They shouldn't tell us that the tests show it's all in our heads, not our lungs. I've heard that one before; so many times before finally getting a correct diagnosis. I was one of the luckier ones when I started, at age 18, to really work on finding out what was making me so sick; only took five intense years, very harmful to my self-esteem, of "you must be neurotic", etc.--before learning at last that I had lupus. Been there; done that; bought the T-shirt; ain't goin' back.

I'm not alone; seems there is even a petition . Please sign it and tell them you have a friend who can't breathe...I seem to be doomed to go through this cough from hell after every cold, flu, or allergy season. It's adding up to a lot of time.

The rumor is that you can still get the old inhalers in Mexico. I've never been to Mexico. I'm getting sick from eating my former favorite, cherry tomatoes, which suddenly all come from Mexico instead of California. I'm going to have to make some kind of bleach solution or something recommended for the immunosuppressed. It seems watermelon this summer, now also only from Mexico, will be out entirely. I have absolutely nothing against Mexican people, culture, food, etc. I can't help getting sick, and I don't get sick on EVERYTHING I eat that comes from there, just enough times and badly enough to not want to play Russian roulette. So although I would love to visit, I'm afraid to. This immunosuppression stuff isn't a lot of fun, really.

Wonder how I can grow my own cherry tomatoes in pots sans the neighborhood cats. Just an aside.

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at http://beepbeep.livejournal.com that I've had so long I'm probably stuck with :) My other blogs are here on blogger...