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Trolls, Molds and Woman Colds

Well that title is fairly self-explanatory I think. So see you next week.

Just yankin your chain.

This week can be somewhat appropriately represented by these three nouns.

First, Trolls. 

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You know what hugs are great for? Sharing germs. Way to go Poppy.

My oldest niece is currently going through a Trolls phase. At least twice a day she asks for “Everybody oh oh oh.” Since she is not quite two, I can understand why the bright, song-filled movie is appealing to her. In fact, the adults of the house have agreed that the movie was either designed by a think-tank of five-year-olds, or the people who made it were crazy high the whole time. Either way I think we are all excited for this phase to be over.

Second, Molds.

I’ve been getting allergy shots for my new-found mold allergy for over a month now. I do feel that they are already starting to help–I have been sinus-infection-free since July despite the very wet September we are having (molds love the rain). The only downside to the shots is that they tend to trigger migraines. In the long run this may be a good thing, as that suggests that mold is a big migraine trigger for me right now; once I get the allergy under control my migraines will likely improve. For right now though, it does make shot day a tad tricky.

Third, Woman Colds.

The Woman Cold is a term I have decided on to describe a phenomenon as real and as ancient as The Man Cold. The Woman Cold, like it’s masculine counterpart, can of course be experienced by either sex. Its name is simply an acknowledgement that the majority of its sufferers are women.

The Woman Cold refers to a cold/illness that the sufferer chooses to ignore and remain in

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Ron with his Woman Cold

denial about until something drastic happens. The owner of The Woman Cold will continue with life as normal, steadfastly insisting that “it’s not that bad” until they either recover or get much, much sicker.

This week I had a Woman Cold. There’s been a cold going around campus and I finally succumbed. Really, as far as the cold itself goes, it was nothing to write home about. The cold was not the primary problem though–the whole week my chest was getting tighter, I was coughing a little, then a lot, then A LOT.

Just part of the little, trifling cold I was sure. It will pass.

Eh. Wrong.

Friday morning I came back from my morning class. I set my backpack on the floor of my room. I bent over to retrieve my phone from its depths. Suddenly I was seized by an intense coughing fit that led me to discover this equation:

Intense coughing + bent over Miranda = throw up on my poor backpack.

Oops.

Now I really, really didn’t want to throw up on someone else’s backpack, so I finally accepted that it was time to stay home from class. My Woman Cold had sneakily metamorphosized into bronchitis.

Actually, as I have already mentioned, this development wasn’t sneaky at all, but as a fundamental part of The Woman Cold is denial, virtually every outcome except full recovery comes as a surprise to the sufferer.

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And don’t think for a second I’m saying that The Woman Cold is a good thing–if many of my professors and classmates hadn’t come down with this particular branch of the cold then I probably wouldn’t have gotten it. They were in denial, they came to class sick, they got other people sick and that ultimately led to me getting bronchitis. The Woman Cold is just as annoying and foolish as the man one. Well almost.

 

 

I Earned My Stripes with a New Zebra Record (Or Two)

Friday at , at long last, I got my Ig meds and was able to do an infusion. It had been exactly three weeks since my last infusion, beating out my previous record of time-without-an-infusion (since I’ve started infusions that is) by several days. It’s been a long three weeks.

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Had to celebrate the end of the nightmare with some Fro Yo!

Amazingly, I did not get seriously sick or get an infection this time. My previous record of two-and-a-half weeks without an infusion got me a horrible gi infection and a partially paralyzed stomach. So my family and I had good reason to be a bit worried this time, but even with classes starting and sickness already going around campus I managed to avoid any great catastrophe…

Friday night I actually set another record–the longest it has ever taken me to do a sub-q infusion. It was my first infusion of Gamunex-C (I had been on Gammagard, Aetna made me switch).

At the historic event Thursday of at last being able to set up my shipment, the nurse informed me that the rate tubing I’ve been using with Gammagard is off-label for Gamunex and so I have to use a different tubing and discard my old ones (I got to be honest this is very unlikely to happen). If you’re wondering what the difference between F900 rate tubing and 120 rate tubing is, it’s just a difference of about six inches and 2 hours. Normally I infuse (or did infuse) two 50ml syringes and each syringe takes about 30 minutes. Add in a short break in between syringes to discourage leaking and my entire infusion took 1.5 hours (not counting set up). Friday it took 1.5 hours PER SYRINGE. If you’re keeping up with my extremely complicated math, you’ll know that means it took 3 hours to infuse Friday!

Now I know what you’re thinking–shouldn’t I just be grateful to have anything to infuse? Well I am. I super duper am. But nonetheless I feel it necessary to be true to human nature and find SOMETHING to whine about, no matter how small.

How long it took is really my only complaint with the new med. Well that and I had the exact same side effects from Gamunex that I had when I infused Gammagard at twice the rate. Otherwise the only thing wrong with Gamunex-C is that it is a change–a change from a med I was very happy on and a routine I was accustomed to. But oh well. Life goes on.

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The new med!

What To Do When You Can’t Get Your Ig Meds

I apologize for not posting last week. The beginning of classes combined with Aetna drama has made for some significant insanity.

As of Friday I’ve gone two weeks without an infusion. This is not the first time that insurance problems have caused a gap in my Ig treatment. Actually it is the third time in 3.5 years of treatment, so if my experience is any indication, it’s hardly a rare occurrence. So what do you do when you run into insurance woes and experience a gap in treatment?

1) You freak out.
tumblr_neiak7IgW71svfqeco1_500If you don’t have PI you can’t fully understand how terrifying it is to go without Ig treatment, but let me try to help you: imagine that everyone is born with a car, but you were only born with half of one. Most of the time you have a supplemental second half that, though not as good as a regular car, allows your car to function. Now let’s say your car insurance hasn’t re-approved your supplemental second half, so it is taken away temporarily. Do you know what half a car is good for? Nothing. That’s what. It can’t drive. It can’t even keep out the rain. Right now I’m driving in half a car (so by “driving” I mean just sitting there hopelessly. But I get lost in the metaphor).

 

2) You prepare for battle.IMG_0002

Ok freaking out time is over. Now it’s time to get down to business. Until you receive your infusion you will be fighting a war of insurmountable odds on two fronts: on the Western Front you will need to pull out all the stops to defend against viral and bacterial invaders–AKA you’ll be trying not to get sick. So dig some trenches and fill them with hand sanitizer, germicide wipes and Vitamin C. On the Eastern Front you’ll be on the offensive, trying to infiltrate the insurance company and get access to your Ig meds before the germs overwhelm your defenses. As it is only a matter of time before your weakened immune system is smushed, your offensive efforts are especially important.IMG_0001

 

3) You harass your insurance company into submission.

This is your offensive plan: you call them everyday, multiple times a day. You ferry messages between your insurance adversaries and your doctor’s office, hoping you’ll be able to find a resolution. You write down the names of people you’ve spoken to so you don’t get lost in the vast sea of insurance employees playing hot-potato and phone-tag with you. Yes, your ears will bleed from the grating, static-filled hold-music you spend minutes and hours and days listening to. Yes, your brain will be battered by the ever-changing information you are told ping-ponging around in your head. Yes, you will burn with frustration and anger as hour after hour of effort turns fruitless. But when you sit once more in front of the TV with your Ig juice flowing through the needles in your legs or tummy it will all have been worth it.IMG_0003

 

4) You breathe and hold onto the knowledge that this is just a temporary setback.IMG_0005

Every time this happens to me each day without Ig coverage seems endless, the insurance maze seems unsolvable and the sickness that results from lack of treatment feels as if it will go on forever. But every time the lack of coverage comes to an end, the insurance puzzle is solved, treatment resumes and health eventually returns. That being said it is still perfectly acceptable to break some stuff, punch a wall and/or cower in an extremely sanitized corner holding a can of disinfectant spray–that my friends is an inescapable part of the process.IMG_0004

 

5) You eventually emerge bloodied but victorious.IMG_0006

Congratulations. By now you probably have caught a virus or developed an infection, but at last you get to resume treatment. Your insurance woes are behind you for at least another 6-12 months. Now you just have to deal with the all the stuff you normally do, plus the physical and psychological destruction caused by your war with the insurance company. Feel free to melt into a puddle of relief that the nightmare is, for now at least, over.

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