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What CFers Do: Put Doctors and Pharmacies on Speed-dial

This entry is part [part not set] of 19 in the series What CFers Do

Speed-DialYou know that you have issues if your clinic, PCP office, and 3 pharmacies are on your speed-dial on your cell phone. Personally, my iPhone has the following:

  • my PCP office
  • my clinic 800 number
  • my CF coordinator’s cell phone
  • my local Walgreens at the corner
  • my Publix pharmacy where we buy groceries
  • my mail-order specialty pharmacy

I might as well add my Aetna customer service number to that list, but I would have to have my card out to give them my ID number anyway. It’s things like this that make me feel like a secret freak, but at least no one knows this sort of thing unless they thumb through my phone or read this entry. You know that if an EMT ever found me on the ground at the mall and got to my phone, he’d know something was wrong with me. I’d at least be labeled as a hypochondriac at the least. I hope he’d be smart enough to see Wife Mobile and Wife Work at the top of my list and call her first.

What CFers Do: Get Mad About Losing Weight From a Cold

This entry is part [part not set] of 19 in the series What CFers Do

Soup for a ColdMy latest life event that describes what CFers do: I am mad about losing weight from what I think was just a cold! CFers, unite in common disgust.

I know it’s been quiet on on here for a week, but my life has been anything but quiet. Beautiful’s allergies grew into an infection and I either got her bug or caught a cold on my own by coincidence. I don’t handle stress very well, either, and our last 3 weeks have been full of stress. We are very blessed to have a strong marriage, because it’s been a very trying time, not for our relationship, but this sort of stuff is what pulls couples apart. We grew closer.

So, the last you heard from me, I had hit a clinic all-time high weight of 132lbs and could barely give them a sample for the sputum culture because I didn’t really have any to bring up. I managed a little dot for the RT and we sent it away for cultures, which take forever when my sample is that small. We only had the preliminary results last Friday when I e-mailed Sue.

Starting the very next day, I woke up with a completely blocked nose, coughing and gagging from mucus, and started a 5-day off and on fever, but strangely never ran a temperature; my body simply lost temperature regulation for some reason.

I also lost an interest in food. Completely. Then, when I was better, my stomach had shrunk back to pre-vacation size so I was no longer able to eat a full meal when I did eat. I am trying my best to stretch it out again, but Saturday’s weigh in flashed a 122 back at me! Ten pounds lost in a few days!

I’m hoping it’s mostly dehydration, because I don’t look any different.

What CFers Do: Go to the Pharmacy

This entry is part [part not set] of 19 in the series What CFers Do
A Few of My Pills, Lots More Elsewhere

A Few of My Pills, Lots More Elsewhere

I’ve been going to the pharmacy for as long as I can remember. As a little kid in Findlay, Ohio, I still remember the pharmacy was The Medicine Shoppe and my parents joked with the pharmacist asking which of his kids we were putting through college by now.

I could probably take you to the pharmacy even though we moved before I started driving.

I remember there was a motion-detector in the corner by the door and I’d try to move around slowly while Mom paid to see if I could get from one side of the store to the other without tripping the light on it.

I remember my pharmacist at our local Publix after we moved here knew me by name. His name was Bruce and he called me “Mr. Petersen” when I was only 17 or 18.

Our Publix pharmacy next to our apartments when we got married had a quick-learning and personable college-age girl with cute glasses frames (that was her nickname between Beautiful and me, “glasses frames girl”) who never needed to ask my name. She saw me walk to the general area of the pharmacy and would pull anything that was mine that was ready. She even started to recognize Beautiful if she was the one doing the picking up for me.

This all changed when we bought our house and can’t seem to get perfect service anywhere, but we are giving one of the Publix pharmacies another shot now that they fired their pharmacy manager about a year ago. One girl recognizes me, but still confirms my name and address. We’ll get her trained, too.

CFers always train their pharmacies and pharmacists. We probably visit a pharmacy every week – sometimes 4 times per week, plus deliveries from mail-order specialty pharmacies. a couple of times per month. It’s a lot of Rx co-pays and a lot of “hey, you should recognize me by now.”

What CFers Do: Gross Normal People Out

Maybe Gross

Careful, she may be gross...

This was by request from Beautiful after watching a Twitter conversation I was having with another CFer about our ENT visits. This conversation happened to be going on with a seemingly “cute and regular” young woman as far as her sinus surgery pre-op photo with pigtails and a big grin showed the world.

Before you know it, we’re talking about boogers and other gross sinus/nasal stuff. Quite a shock from the cultural norm, but CF girls aren’t like other girls that way. Sure, they don’t like to talk about this sort of stuff (at least I don’t gather that from our more normal conversations that happen every day), but they aren’t bothered by it. I haven’t found a guy yet who didn’t like to talk about bodily functions, so I’ve got that spectrum of the global population covered.

Topics CFers bring up that gross out others:

  • mucus
  • snot
  • boogers
  • polyps
  • enemas
  • blood (especially hymoptysis)
  • injections
  • puking
  • surgery
  • puss
  • diarrhea
  • particular things that happen that are gross as they happen

I think this should stand as a generally good reason why 2 CFers should not marry, aside from the whole issue of getting each other sick constantly and not being able to rely on the other person to be somewhat healthy enough to care for them if things should turn for the worse at some point. Can you just imagine the conversations that would go on in that house? Not to mention a number of other gross things that our spouses have discovered after moving in and realizing what they go themselves into. 😉

Sometimes you just have to say, “trust me, you don’t want to know, so you’d better stop the questions before you get details you don’t want.”