Tuesday, May 5, 2009


My flu relapse sucks! Kids, don't try this at home.

Monday, May 4, 2009

Lived Thru The Night And Hope That Was The Nadir

I did have a horrible night and came close to giving in and going to the local ER. I could not breathe well, but I didn't want to go. I couldn't afford the copay for one thing. Also, I don't do well in hospitals overall (all of the crazy sensitivities etc. I have do not translate to nurses) and that's where the real germs with might and power lurk, waiting for the immunosuppressed. And there is always some sort of bureaucracy that trips me up, the last time having to do with the fact that my primary care doctor is in a different city.

Today after finally getting some sleep I felt like a facecloth that had been wrung and hung up to dry. Exhausted, depleted. But I could breathe better than I did last night. I tried to get some very icky paperwork done today and I did, but only a little bit of it, as I can't do very much very quickly. Tonight I kept falling asleep in front of the computer and I'm going to go take a shower now and get into bed and turn out the light.

I'm grateful for being better today than I was last night and I hope I will be even better tomorrow. Fifteen days, an antibiotic, three inhalers, and a lot of extra prednisone later, I might actually be starting to get over this respiratory infection. I sure hope so.

No, I haven't been tested for H1N1. I do not meet the criteria:

"Testing for Swine Flu
Testing for swine flu is being focused on patients who meet the following criteria:
o Patients who have been hospitalized due to influenza-like illness
o Non-hospitalized patients with influenza-like illness who:
• Had close contact with a person confirmed to have swine flu
• Lives in a high-risk setting for transmission (e.g., school, prison)
• Is part of a cluster of people with influenza-like illness (only one patient needs laboratory confirmation)
• Returned from Mexico within 7 days of illness onset or cared for ill household members with this travel history"

So anyway, good night.

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.

Friday, May 1, 2009

Woke up, got out of bed, dragged a comb across my head...

and there the similarity to the Beatles song ends :)

I am having trouble breathing today. And it hurts to breathe. I've also got a nice big shiny RED clown-face lupus "butterfly" rash. I'm trying this new makeup I got from Clinique to guinea pig for my support group. It's green. Supposed to reduce red. I think it did a bit, but I may just have to look like I just stepped out of a sauna on this actually cool day...

And I've got joint and muscle aches, and am very tired, so probably won't be seen by people except those at the pharmacy and at wherever dburr wants to go for errands, anyway !

What's wrong with me lately

Well, I had some kind of flu bug that probably started affecting me on April 18. I don't have flu symptoms any more. Due to being immunosuppressed from lupus treatments, and in particular now being B-cell suppressed from receiving rituxan in a medical study, I am catching infections very easily. I did get a secondary bacterial infection in my lungs, cleared by a Z-pack (antibiotic.)

What's left is a cough and some trouble talking, breathing with any exertion, fatigue. At first I really couldn't talk at all but now that is better. This unfortunately is a typical problem for me, and goes back to April/October of childhood years when the allergies came around. I did see a pulmonologist, was diagnosed with acute bronchitis (no, you can't catch it from me -- but wit the H1N1 stuff happening now I can clear a room fast when I cough!) and seem to be getting better with several medications. Unfortunately one of them is good old prednisone. I had been losing weight at last, but who knows what it will do to my metabolism again. Hopefully I can get back to a low dose soon. I'm already swelling, ugh. And, yes, I do feel the tendency to depression, moodiness, and particularly oversensitivity to criticism. I keep reminding myself it's the med. And, I'm avoiding criticism. I'm ok if I stay quiet and peaceful, which is also what I need to get better.

About Me

My photo
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...