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The Chronic Illness New Year

The start of a new year is great right? You watch the ball drop, raise a glass, make resolutions–all that good stuff. January first comes around each year and you feel a sense of a fresh start. You look back on the previous year and see how far you’ve come; you look forward into the new year that holds all sorts of possibilities. Great. But for those of us who deal with chronic, significant health issues the new year means something else as well.

It’s something we dread.

It starts not on January 1, but with the first major medical necessity of the new year.

For me, and my PI homies out there that is generally our first infusion shipment of the year.

You dial the specialty pharmacy number with a knot in your stomach, you try to sound normal as you go through all the normal shipment info, then the moment arrives– with trembling hand you hold the phone to your ear and wait for the bomb to drop. Your copay amount.

You see, the new year means that the deductible you met last year is all gone and you have a fresh pile of money you have to toss into the insurance pit before you’ll get decent coverage.

It also means that your insurance company can make all sorts of changes that come into effect with the new year–maybe they’ll move your infusion medication to a different tier on their covered medications meaning they cover less of it, maybe they’ll increase the cost of your medication, maybe they’ll make you switch to a whole different one because they no longer cover the one you’re on… The terrifying possibilities are nearly endless.

This past week the Chronic Illness New Year hit me and my family hard. I went to order my months supply of Gamunex-c and infusion supplies to be met with the wonderful surprise of my copay increasing from $250 (but actually zero because our deductible had been met with copay assistance from the wonderful folks at Gammagard before I was forced to switch) to $600.

For those of you who aren’t familiar with Ig infusions, this may seem like an impossible amount (and really it should be), but the sad fact is that this is a problem continually faced by those who need Ig infusions and their families.

Luckily most Ig companies provide copay assistance to those who use their product and need help paying for it (which is basically everybody). After my wonderful doc and I jumped through several hoops, it looks like I will be able to get copay assistance starting next month from my new buds at Gamunex. But even with assistance many families still have to shell out a considerable amount before the year’s deductible is met.

As I’m writing this I’m thinking I really, really wish that I didn’t have to know so much about health insurance already. But I’m also thinking despite the hoops, the bills, the stress, and all the wonders of the Chronic Illness New Year, I’m just so grateful to be able to have the Ig infusions. I’m so grateful that my immunodeficiency was able to be diagnosed and there is this treatment. And it does help. A lot.

So Happy Chronic Illness New Year! May the odds be ever in your favor…

How Can an Illness be Invisible?

“Invisible illness” is a term you see thrown about a lot these days, but have you ever wondered exactly what it means–how an illness can be “invisible?” Well if so, good. You’re in the right place, cuz I’m about to explain. Or try to at least.

See these two good-looking sisters? Pretend for a moment you don’t know which one is me–just by looking at the picture can you tell which sister has an immunodeficiency? Migraines? Anxiety?

No. You can’t. Let’s be honest–you can’t even tell which of us is older (me people! Me. The one with bad vision. Everyone always thinks she is older). That’s what an invisible illness is–a condition that can’t be identified by just looking; it’s the pain that no one sees, the panic that no one notices, the everyday struggle that goes unrecognized, the illness that goes unseen, unrealized, sometimes unbelieved–that is what is meant by “invisible.”

Really almost all chronic illnesses fall under this category because so little of what goes on with our bodies is visible to the naked eye. And yes, this is good because I think most people, sick or not, prefer not to stick out. But it’s also bad. Why?

Well let’s go back to me as an example. Except for my inability to smile normally for pictures, I look like a pretty average college student (I think so at least). So people who don’t know me, who say, see me in a morning class but not in an afternoon one, would assume I’m just skipping that second class. And that, in turn, would change the way they look at me. I know this from high school; most kids I had classes with the last couple years of high school thought I just skipped class all the time. So did some of the teachers. Because they couldn’t see what was wrong with me, and because at the time, I didn’t even know exactly what was wrong with me, they didn’t believe that a teenager could really be sick that much. Therefore I must just be a lazy, liar skipping class and then making up tales to cover my butt.

We humans have a hard time believing in what we cannot see. It’s silly, but it is definitely a thing. When applied to invisible illness, it causes people to say stuff like “but you don’t look sick,” in turn causing an increased co-morbidity of chronic illness and homicidal impulses (kidding). But hearing stuff like “but you don’t look sick” or “but you’re too young to have all these problems” does get old real fast. Not that I would like people to come up to me and say, “wow you look awful!” That’s not what I’m getting at here. What I’m getting at is that all people with invisible illnesses want is for you to believe them. Believe when they say they’re in pain, they’re in pain–even if you can’t see it. Believe when they say they’re tired, it’s more than just being a little sleepy. Believe them when they say they’d love to, but they’re not feeling up to it. Just believe and be understanding. Those two actions alone can significantly lift the burden of an invisible illness.

Another Not-So-Smooth Start to a Semester

If you’ve been following me for a while you’ll remember that my last semester started off with being unable to get my infusion for three weeks and then coming down with whooping cough. Needless to say I was hoping for things to go a bit smoother this semester. But that’s not really how life works I guess.

Thursday was our first day of classes. I had three classes (French, Screen Writing and Dramatic Literature) and a meeting to update my accommodations letter. While I was in Screen Writing I got the bad news–my sister and niece had started throwing up after I left for class. We had the dreaded stomach flu in our home.

The last time I had a stomach virus I was a brand-new 19-year-old. That virus damaged my digestive system, causing gastroparesis (literally “stomach paralysis”), and leading to some very miserable months and ultimately two years away from school. So naturally I have an intense fear of dear old norovirus and all its relatives.

Egged on by this fear I did everything I could to avoid coming down with it this time img_0084around, but by the time I became aware of its presence it was far too late. That night around 9:30 I threw up for the first time. And then again. And again. And again. Until about 5 or so in the morning. *shiver* The stomach flu is the WORST. Every time I have it I get like minor PTSD where for a while I can’t stand certain foods, clothes, tv shows, movies–anything that is associated with the experience. This is especially true for the virus that permanently messed up my digestive system and changed my life.

EA57ED6A-C454-4F26-A275-0833E9EACA3BBut like I’ve said before, even the worst of things pass, and so did this. Well it’s passing. Friday I was still quite sick and miserable, even though I had stopped involuntarily ejecting the contents of my stomach and intestines. Mostly I had gotten really dehydrated and I was having a hard time getting sufficiently rehydrated. I ended up going into the local urgent care in the afternoon because of this; they did not give me a saline IV as I had hoped they would, but they gave me some strong anti nausea medicine to help me be able to sleep and drink more. I hadn’t slept since Wednesday night so I was beyond exhausted. Later Friday (about 4), I laid down to take a nap and woke up at 9:30 the next morning!

Right now as I write this, I am doing my infusion. I didn’t want to do it until I was well hydrated again, since insufficient hydration makes the infusion process (and aftermath) seriously miserable. And I’ve had quite enough of that this weekend.

So yeah, another rough start. But I don’t think it bodes ill for the semester at large–I think it’s gunna be a great one, as a matter of fact. Because, well, why shouldn’t it be?

Migraine Crash Kit

Happy New Year! I feel like I’m expected to write like “a year in review” kind of post today, but I’m not feelin it. Instead I’m gunna talk about migraines; migraines are on my mind as I just emerged from a nasty 72 hour period of  head-crunching, world-spinning, face-tingling, and vampire-like aversion to light and noise.

The tricky thing about migraines is that they can happen anytime, anywhere. You could be in the car, at work or school, at the store, on a date, eating out with friends—and boom—a migraine can just come out of nowhere. Because of this a lot of people with migraines find it useful to have a crash kit that they take with them whenever they go out. In addition it’s always important to have a more extensive kit to fall back on at home. What goes in such a kit will vary greatly as no two migraneurs are the same. Here’s what I keep in mine.

On-the-Go Crash Kit: (keep one in purse, one in backpack- have with me at all times when I leave the house)

  • Triptans (Frova works best for me personally)55A7D547-E9B8-444B-A7E2-A9D7F8DE5B1C
  • Aspirin/Ibuprofen
  • Benadryl
  • Anti-nausea meds (I use Zofran)
  • Water bottle
  • Ginger Tummy Drops
  • Protein Bar


At Home Kit:

  • Sports drink (I prefer low cal Gatorade)
  • Excedrin
  • A longer working NSAID like Aleve
  • Ginger Ale
  • Icy Hot (for shoulders and neck)
  • Peppermint oil (temples)
  • Steamer (sinus/face pain and congestion comes along with my migraines)
  • Higher caffeine content Kombucha
  • Foods for upset stomach (crackers, bread, applesauce, etc)
  • Stronger pain killers (only if it won’t break with normal stuff)
  • Ice pack
  • Heating pad
  • Dark, quiet room to lie down in
  • My tablet to listen to an audio book or familiar tv show (or watch once my eyes can take it)
  • And of course everything in my on-the-go kit as well



What do you keep in your crash kit?