My Latest UC Pity Party, Explained...

My journey with the beast we know as ulcerative colitis is also marked by a lot of blessings, one of which being an outrageously supportive network of friends and family.  Many of those great folks say such nice things to me about how upbeat and positive I manage to stay in the face of all this crap, but for some reason, I feel the need prove them wrong by pointing out examples of just how upset I can become.

Sometimes these little pity parties are not even triggered by the disease itself, but by all the other stuff that goes along with it.  Example: just last week, I came very close to losing control of my bowels just as I arrived at a job interview.  Worst first impression EVER, but I shrugged that off and went on about my business, and it was fine.  (Hey, I even got the job!)  So I can survive all that, but a little piece of paper I received in the mail late last week started me on a cycle of doom that ended in a full-fledged temper tantrum last night.

It was a benefit update from my new health insurance company, showing me that my share of my monthly Remicade infusions will be $2,500.  Each.  When I became upset about this, John reminded me that before he took his new job, he quizzed their H.R. about this treatment specifically, and although he didn't remember the exact answer about how much it would cost, he knew he would never had accepted an answer like, "$2,500."  So he set off to get some answers from his company about the coverage.

Meanwhile, I had to deal with some other administrative stuff related to getting all my medications paid for.  But it's kind of hard because when I first got signed up for this new insurance, they input the wrong birthdate, so I wasn't showing up in their system.  While they were working on that, I still needed to have prescriptions filled, so they did some kind of temporary voodoo to make that work.  With the help of some nice folks at the insurance company and John's H.R. contact, it's fixed now, so everything should be running smoothly on that system.  (Pay attention, friends: THAT is what they call "foreshadowing...")

Then, there's the fact that the clinic where I get my Remicade treatments has a hard time staying on top of their billing.  I know it takes time to file a claim to my insurance, find out what they are going to pay, and then bill me for the balance, but as of today, my bill for the treatment I received in MARCH was still outstanding (as well as all the subsequent treatments.)  I called twice in July to sort this out, and finally sent a really angry letter asking them to research any discrepancies and get back to me.  Yesterday, exactly a month after that letter was sent, I received a voice mail from the billing agent saying that my balance is $1,053, that I should call her at my earliest convenience, and she is "available to take my credit card info over the phone, because these bills are getting quite old now."  I nearly crushed the phone against my head when I heard that.  My blood pressure is going up just writing about it now.

But wait!  There's another player in this whole billing thing.  The drug company offers a program for patients to reimburse you a portion of your share of their outrageously-priced drug therapy, based on some formula nobody will ever figure out.  But because it's a reimbursement program, you wait until your insurance pays the clinic, then send the drug company your insurance paperwork showing what your portion is, then they will load their reimbursement onto a credit card which you can only use to pay your health care provider (not at the grocery store, or Anthropologie, or DSW!) Thankfully, my clinic is so far behind in their billing that this doesn't slow down my ability to pay my bills, but it's quite a hassle.  Each year, you need to reapply for this program by filling out paperwork which needs to be approved by your doctor and accompanied by a slew of your personal financial documents, so they can hold your social security number hostage, I suppose.

Now back to John and what he found out from his employer about that $2,500.  They want to provide their employees with an insurance plan that has a $1,000 deductible, but the premiums would be sky high, and only a small percentage of their employees will use their health plan enough to reach that cutoff in one year anyway.  So instead, they have a plan with a $2,500 deductible (aha...the amount I am expected to pay for that Remicade infusion...a light goes on!) but they will reimburse any employee $1,500 when they show that they have met that $2,500 deductible.  Which is great, but the paperwork I received from the insurance company last week is not the form they need, so the H.R. person kindly told John that I can access my insurance account online and print off what she needs and we'll go from there.  As luck would have it, this is the same form I need to send in to the drug company to get their reimbursement, so I can kill two birds with one stone, as it were.

But here's where the temper tantrum comes in.  John asked me to get that paperwork last night so he could turn it in today.  I said sure, but give me a minute, I am running behind on my dosing schedule and need to administer a suppository and then an enema so that I'll be able to do my last enema before bedtime.  Once that was done, I sat down at the computer and logged in to the insurance website, where I can see several claims, but not the one in question.  Hmmmm....Guess what?  None of the claims that took place before my birthdate was fixed shows up in their system!  Before I got all freaked out, I asked John to just look over my shoulder and see if maybe I was missing something, and when he couldn't figure it out, he got frustrated.  So now we are both mad, and I tell him, don't worry about it, I will call the insurance company tomorrow, I'm sorry I got you upset, don't worry.  But he was pretty ticked and kind of flew off the handle about how frustrating this is, which made me feel like it was somehow MY fault.

And that's when I blew.

I screamed that I know how f'ing frustrating this is, he doesn't have to tell me what a f'ing frustration all of this is, because I want to slit my f'ing wrists over all of this pretty much every f'ing day.  All this, on top of taking a zillion pills, structuring my day around enemas and suppositories, and still feeling like crap half the time!  And yes, I do mean I SCREAMED all of this, then stormed out of the house in tears.  I spent the next 15 minutes sitting on my neighbor's curb, crying my eyes out, trying to get over it and convince myself that it's just paperwork--it's all going to sort itself out. 

Soon, I was drawing a little bit of attention from passing cars and neighbors, sitting there sobbing, but I didn't really care.  The only thing that finally motivated me to move was that I had to go back inside and begin the ritual that is administering my last enema of the day. (Those goddamn f'ing enemas....)

If you've read this far, you have a lot more patience than me, so I hope you can take something away from it.  Namely, I hope it makes you think a little (again) about the concept of universal health care and how much more cost and time effective it would be, not just for me, but for all the other people involved in this story, if we had a health care system that followed each person through their life, so they know who they are, charged a reasonable fee for the treatment or drug, and simply managed their f'ing bills.  Plus, add to this the fact that my disease, as well as so many others, is profoundly affected by stress, so maybe, just maybe, removing some of the stress from the process of being treated would actually result in better outcomes. 

I'll tell you something, I'd pay a lot more than that stupid $2,500 that started all of this if I could have such a system.  Having UC is a f'ing nightmare, but it's nothing compared to navigating the health care system.  More often than not, that is the crux of my UC-related pity parties.

(Addendum: you're going to LOVE this! I just got a robo-call from Walgreens telling me they are having trouble re-filling my suppository prescription and need to contact my insurance company for more information.  How much do you want to bet that the voodoo related to getting my birthdate in their system is responsible for this latest snafu?)

Worm Day #3

It's time to take my third dose of whipworm ova already--can't hardly believe how it sneaks up on me.  There's not much to be done by way of preparations.  I will plan on eating a lighter, less challenging, diet than usual today and for a few days going forward.  Then, I will take a little vial of clear liquid out of my fridge, which I hope and pray contains 500 viable TT ova, and drink that up just before bedtime tonight, which is the quietest time for my belly, so there's less chance of the eggs getting swept out the digestive tract.  Tomorrow and maybe for a day or two after, I will take a good dose of imodium to slow down my digestion and give those fellas the opportunity to settle in.  Other than that, life will go on as normal.

I have yet to reap any benefit from the wigglers I have taken thus far, and that is to be expected.  If I am calculating correctly, the first dose I took 8 weeks ago should just be getting attached to the lining of my colon and will soon start laying eggs of their own. Don't worry, these eggs cannot be fertilized in my colon, so there's little risk of developing a raging worm population.  They should harmlessly pass through my stool and into the toilet.  I will take a stool test in another month or six weeks to make sure those eggs are there, which is the only sure way to know if the worms are alive. (Barring another colonscopy, which I'm not up for.)  Once we know they are alive, it will still take a little while for me to expect to feel much better, and even then, it will likely be a slow improvement, not like flipping some kind of switch.  So I'm thinking that by Christmas time, I can expect to feel better.

Of course, knowing all of this does not stop me from reading into every single symptom I'm having.  The last month has been a little extra rocky for me, and I'm hoping that means there is a battle being waged by my immune system trying to expel my worms and my worms fighting right back.  I've had more b.m.'s, they have been less formed, they have come throughout the day (whereas they are usually bunched up in the morning), they have been more urgent, and I've started seeing some blood and just a bit of mucus again after having gotten that under control earlier this summer.  All of this could mean the worms are getting settled...or it could mean nothing.  I hate that about having UC.  There's just no way of controlling all the variables to know what's causing what.

But I do think I'm doing a bit better this week.  Have been eating and drinking a bit more freely the last few days, and have had no urgency emergencies.  Of course, some of this may be attributable to the fact that I went coffee-free for a week (fell off the wagon today, but I'll get back on), plus I added YET ANOTHER enema to my daily regimen for the last 8 days.  So now, in addition to my daily asacol, prednisone, azathioprine, and monthly Remicade infusions, I take two suppositories, a hydrocortisone foam enema, and a hydrocortisone liquid enema each day.  Geez.  When you put it THAT way, one really wonders why I'm not doing better than I am.

Which makes me all the more hopeful that the worms are the answer!  God, I sure hope so.