hold your breath to breathe

To those of you who follow me on Twitter, it’s no secret I had a really overwhelming trip to the doctor today.  Yet, things got done, and for that I am grateful.  But, here’s the story from the beginning, attempting to capture my mindset and emotions while writing this one.  We’ll see how it turns out.

FIRST, I have to say, I talked to Epic Steve a couple hours before my appointment today, and, dude—thanks for motivating me to go raise some hell in there .  Second, go welcome him HOME!!   WELCOME HOME STEVE!!!!

Warning in advance, if you don’t like me swearing, I’m warning you in advance, right now—it came out when I was writing; this is the real deal, and I’m not editing it out.  You guys know I try to be as honest as possible with this blog, and that includes how I use (or misuse) language.  And, you’re getting the real me here, because I only swear in real life when I’m REALLY frustrated.  Disclaimer ended.

Also, this may not all totally make sense as it may not be in order; so much went on I’m having trouble piecing it together.

Waiting room.  At this point, Kathy the phone lady came out to get somebody and was all “Hi Kerri”.  She probably knew I was coming in, but I am not sure it is a good thing or not when the nurse lady can recognize you when you are sitting in the waiting room . . .

So I wait here for awhile.  And watch some Doctor, Doctor on my iPod, because what else is there to do in the waiting room?  You gotta watch Doctor, Doctor, because it’s hilarious.

I bought a delicious Vanilla Bean Frappuccino to kill some time before going to the doctor, and got to spend some time with a friend who I rarely ever run into at school (I couldn’t convince him to come to my appointment with me though lol).  It was delicious and made waiting more bearable.  I enjoy Starbucks.  (And <3 Epic Steve, as he is caffienating me from a zillion miles away).

Starbucks, Starbucks. Waiting for the doctor, doctor.  (Kathy and I talked about Starbucks as she was prepping the examining room.  I love that lady.)

So the doctor finally comes in.   After the hi-how-are-you’s the first thing she says is “So, you’ve seen Dr. H again?”

“Uhhhh yeah.  I don’t think we really click . . .  He looks at my peak flows and spirometry and doesn’t let me talk or ask questions.”

“Well, I can answer any questions you have.”

“Yeah.”  That is true.  But what the heck is the point if she never knows any answers?  I know way more about this stupid disease than she does. “I think I fall into a weird place.  I have weird asthma, but not severe asthma.  From what I’ve seen, he primarily treats COPDers, and I am the only young person amongst the 80 year olds.”

Okay, so then she goes “Asthma’s a chronic condition.  It doesn’t go away, so young people with asthma turn into older people with asthma.”

NO SHIT lady.  “Yeah, I’m aware of that.” Obviously.  “Except most asthmatics don’t sit around and talk about their smoking history.  Anyways, I don’t feel like I’m accomplishing anything with him . . .”

She clicks at her computer for a moment “Your spirometry is normal,”

“I’ve actually sent that out to a few friends who are respiratory therapists and asthmatics over the internet, and to Dr. Wenzel at University of PIttsburgh who’s like, a world renowned pulmonologist who’s in charge of the Severe Asthma Research Program. I have a friend who participated in the study who suggested I send them over to her.  She took a look at them, which is really cool.”  My doc actually was looking REALLY impressed at this.  (All thanks to Steve, I might add ).  “But, well, I know it’s not huge or anything but my FEF—my small airway stuff—is like, 77% predicted.”

“Which indicates asthma,”

“Yeah.  Anyways, when I went for the skin testing, I’m still kind of sceptical of the accuracy of the results.  The control spot didn’t react,”

“Which means you’re not allergic.”

“Um, which MEANS that I can’t be guaranteed the accuracy of the test, as the CONTROL SPOT that is supposed to react in EVERYBODY did not do ANYTHING.  It was exactly the same as the saline spot and all the other spots.  Dr. H was kind of surprised she let it go.  Anyways, Dr. Wenzel recommended doing the allergy blood and eosinophil testing, as well as FULL pulmonary function tests.  Which, I intended to ask Dr. H about, but he wouldn’t let me TALK.  I need to see somebody who deals with ASTHMA on a regular basis—asthma and COPD are totally different.”

“I can look around for an asthma specialist for you, and make a referral for you if I can find one.  Would you like to see the same allergist or a different one this time?”

“Um, a different one please.” (I can just imagine: “Uh, hey Dr. K.  My allergy tests were broken, you wanna do them again?”  No thanks.  Wow, they’d take me SO seriously if I talked like that, eh?).

“How often are you using your blue puffer?”

“It really varies,   I can’t really give you a definitive answer on that . . . I can go for a week without it, or I can use it every two days, or at some times, like yesterday afternoon, I used it four times in five hours.  It’s all over the place.”

“Well, I’m satisfied with your level of control.”  Awesome. I think that means she has figured out that the standard three-times-a-week on the Ventolin DOESN’T quite work for me all the time.

This lead me to mention the chest tightness/dyspnea of yesterday’s flare.

Which causes her to get on the friggin anxiety trip again, which is when I feel myself starting to crumble a bit, not to mention get pissed off.  I finally look at her straight in the eye and say “Breathing is first, reaction is secondary.”  (Boo-ya!)

And I think she finally got it when I said it that way, like the last time she mentioned it, when I pulled a Breathinstephen and went “You’d be a little anxious too, if you couldn’t breathe”.

So then she said something else that pissed me off, and I can’t even remember what it was but this is when I was like:

“I have to deal with this EVERY SINGLE DAY. [this is where I start crying]  And when I am getting different responses from different people, it’s frustrating.  And so many people just don’t get it.”

At this point, Dr. S handed me a Kleenex and told me to keep talking, which kind of pissed me off even more.  I did not go in to this appointment with desire to be fucking counselled.  Yes, I wanted to work stuff, out, but NO, I did not intend to come in here and have a breakdown and cry and then for her to dig around in my head while I’m in the process of being an emotional wreck, okay?

I start beginning to try to calm myself down while she tries to pick around in my brain about my asthmatic friends of the blue-puffer real-time variety, and a bunch of other crap.

So I kind of just looked up at the ceiling and made myself force my tears back with hopes she would get off my back.  I bet I’m going to have some shitty notes in my file about this one.

At some point when she was digging around in my head I said something about being overwhelmed when I’m doing all the stuff I am supposed to and end up with weird fluctuating peak flows.

So she comes to this inaccurate conclusion: “Your peak flows are overwhelming you.” I may be a little fixated at times, but no, they’re not.  They often make things make more sense, actually.  “Maybe you should stop checking them.”

Um, WHAT?

“Uh, actually, that thing [meaning the meter] has kind of made a big difference on several occasions.  I’ve been as low as 64% and not even FELT it, at all, okay?  It’s part of what I do, and it makes a lot of difference to how I make decisions to self-treat.”

I know it’s true when I’m flaring I do go somewhat overboard with checking my PFs.  And I do go with perception first, numbers second.  If I feel crappy and my peak flow is fine, yes, I treat my perception.  However, sometimes that slight overboard is necessary.  If I am feeling like crap consistently with minor improvements, then YES, I think doing peak flows is really important—ditto if I have a flare like yesterday afternoon and I want to know HOW I’m responding to what I’m doing, and if an hour after treatment I am crashing again.  If I’m feeling good, then I check MAYBE twice a day.

The peak flow talk distracted her I think, so I got her to get off my back about the emotional crap.  Which is kind of something I tend not to talk to people who aren’t asthmatics themselves about because nobody else really gets it.  And while it’s true that I don’t know that my doc doesn’t have asthma, the emotional crap is why I blog.  ‘Cause you guys GET IT.

So finally since I have distracted her from digging around in my brain, I pull out my rescue inhalers and go “Yeah, they switched my ratio-salbutamol to this apo-salvent stuff, and it tastes like bug spray.  Can you, like, make it so they don’t do that?”

I made her laugh with the bug spray comment, which I think had her convinced I was back to my normal cheerful self and I wasn’t going to go home and like, freak out on anybody.  She told me I could probably just talk to the pharmacist, but she could change my prescription to no-substitutions.

So, I walked out having made progress, even if I did cry and get really pissed off.  And, I guess that, in retrospect, is probably a good thing I freaked her out a bit that way.  I think I may come across a lot of times at these appointments like I’ve got my shit together about this asthma thing—and, most of the time, I really do, even if nobody can give me any answers.  But, at the same time, I think I come across as definitely INVOLVED but like, almost nonchalant, because I’m very open and am a really cheerful, positive person.  I think that this over-the-top reaction was probably partly due to my frustration with Dr. S, added to my frustration from Dr. H last week, on top of being an emotional girl, on top of being a hormonal emotional girl (yep, yesterday’s flare?  Blame my period.)

Referral to a new allergist as well as HOPEFULLY one to an asthma specialist (if they even exist here), and prescription refills

And, a lot of frustration in my head and my heart, a lot that I’m gonna think too much about, and a lot to bring back to you guys out here in the asthma world.

This has gotten long enough, but, hey, that’s the real deal.

[First, thanks for reading all of this long post.  Thank you all for your continued friendship and support through everything.  Each and every one of you is so special to me, and I appreciate it so much.  Thank you for sharing in this journey, through the bad and the good.  <3]