The State of MY Union

Today, President Obama will make his State of the Union address, and it got me thinking that maybe it's a good day to check in with y'all about the state of MY Union.  (For those who don't know, my sometimes nickname for the collective consciousness of me and my wormy little fellas is "the Union."  Or "the Legion." Or even "the Army.")

Unlike that other State of the Union, this one will not last days on end, will not be upstaged by the logistics of seating those who disagree with one another side-by-side, and will not once allude to the following terms: "ginned up," "shellacking," or (and this is my favorite) "the American people."  There won't even be a rebuttal statement, official or otherwise, from a perceived rising star among my adversaries.

So settle in...here's the latest.

Things are going not as well as I'd hoped, but certainly not as badly as I feared.  It's been about 2 and a half weeks since I ingested my 1,250 whipworm ova, and ever since, I've felt my symptoms just a little more keenly than before.  That means I'm a little slower to get going in the mornings, my b.m.'s are a little more loose than I'd like, I'm visiting the loo a bit more frequently, and that darned "barbed wire" feeling in my gut is a tad more persistent.  I've had two "urgency emergencies" since I became the Union, neither time a major accident, but anytime you poop in your pants while you're out in public, even just a little bit, it's worth noting.  My appetite has been up and down, with yesterday ending particularly sadly--all I could stomach was some plain white rice. Boo-hoo.

BUT...none of that's so bad, really, if you think about the horror stories I've heard from some people about contracting this parasite.  Unrelenting diarrhea, fever, cramps, etc.  Of course, others report either no symptoms at all or just a few days of them.  So the short answer is, I'm okay--not as bad as some, not as good as others.  Which is just like the course of my disease in general: I don't have it as bad as many, but I'm a little worse off than some.

So again, the key is that we all just keep in mind that I'm on a journey here.  What happens today is not so important on its own; what matters is the role of today's symptoms in a bigger picture, a long-term trend, and a future remission.  So it's okay if I don't feel so great today or even tomorrow, but do I feel a little bit better the next day?  Am I noticing an upward trend compared to last week?  The Union is young, my friends, and there will be trials and tribulations along the way to us becoming a humming, helminthic machine.  So stay tuned.

Other recent observations and realizations:

• Got a bill the other day for my latest Remicade infusion.  Hold onto your seat...My share of the bill is $1,250.  To which I say: F**K!  (er, I mean "Rats!")  Another reminder of just how badly I want to end my relationship with this drug.
• Re-filling my pill tray last week--you know, the kind that older folks use to keep track of their gazillion meds and what time of day they're supposed to take them--I realized that even if/when I drop my UC meds like prednisone and azathioprine, I will still probably be taking a fair number of pills every day to deal with the long-term effects of my disease and those nasty medications.  Calcium, iron, B-complex vitamins, vitamin D, etc. and so forth.  That's kind of a bummer.
• John asked me last night if I felt like the last few months that I haven't been working have helped me deal with my disease and I have to say ABSOLUTELY.  I was so stressed out, I was definitely headed for a health crisis.  Now the trick is to get another job before that lack of employment becomes the stressor that causes a health crisis.  I'm in the "sweet spot" right now where finding work would be a great thing, but it's not immediately dire.  (However, see above about my continuing medical bills!  "Immediately dire" may be just around the corner!)
• Another thing about the work situation: as I think about what to be when I grow up, I've had some serious consideration that maybe I physically cannot handle the kind of job/s I'd like to have.  A lot of the stuff I've either done or have been interested in are high stress, high burn-out positions, and having a disease that is greatly effected by stress may limit my options if I'm really committed to this remission thing.  It's a bitter pill to swallow, that despite what my mom always told me, maybe I can't do anything I set my mind to.
• Good news: I am consistently able to exercise a fair amount without upsetting the Union too much.  I'm walking the dog, logging a few miles on the treadmill, and learning to twist myself into pretzel shapes in yoga class, all without having to make a break for the restroom (usually.)

Stay tuned for more updates on the State of My Union.  I promise that you, "the American people," will be the first to know if my helminths get all "ginned up" about something or other, and I'm looking forward to sharing with you the news that my UC has taken a "shellacking" at the hands (or the whips) of my little wormy friends.  (So sorry about reneging on my promise to not drag these terms into the conversation. Actually, I never intended to leave them out.  Guess I'm more like a politician than I'd like to admit!)

Cheers!!

Whipworms on Dr. Oz!

My friends the whipworms are continuing their march (or would that be their "wiggle?") into mainstream society, this time on daytime t.v.  No, they didn't go toe-to-toe with the ladies on The View, Matt Lauer didn't do an expose on the Today Show....Dr. Oz featured them on a segment called, "So Crazy it Works!"  Check it out here: http://www.doctoroz.com/videos/weird-health-remedies-pt-1 

This is a good chance to see just how big they are, and even what they look like inside your colon.  You'll notice that everyone in the audience is totally grossed out by these images, but I tell you what, the inside of my colon, as seen in my last colonoscopy, looks way worse than that! Plus, people who poop in their pants on a regular basis are not so easily disgusted by something like a little worm.

Go whipworms, go!

Now What? Waiting, That's What!

Greetings, intrepid readers.  I am back in town, having had an uneventful whirlwind trip across the pond to meet my helminthic destiny.  Everything went smoothly: No travel snafus, not a single emergency sprint to the toilet, and yes, I ingested 1,250 whipworm ova.

It was fairly anti-climatic, really.  The little fellas come in a vial of maybe 2 tsp. of liquid, and it's as clear as clear can be.  No sign of the eggs.  No smell, nothin'.  I gulped them down so fast I actually found myself sucking on the vial, feeling like surely there must have been more to it.  But no, the whole thing was over in a few seconds. 

So how do I feel now?  Well, not great, truthfully.  I've spent more time in the bathroom the last few days.  Today already it's been about 8 times, and it's only mid-afternoon.  A few more trips than usual, passing some darn near totally liquid diarrhea.  A little bit of gas.  Mild cramping.  Could this be a sign of the whipworms getting settled?  I don't know.  I don't think about that so much as I wonder how many of those 1,250 ova I am losing every time I poop!  Truth is, I don't feel any worse than I did before I took the worms, just a little bit different.

Now that I've got these little gems in my system, the hardest part begins: waiting.  Some people have expected that I would come home from this trip and know right away whether this is working or not.  Truth is, helminthic therapy is not so much a destination as a journey.  I expect that as the worms reach maturity, I will start to feel a little bit stronger.  It probably won't be any kind of earth-shattering experience, just a general upward slope until one day, maybe this summer, I'll realize that HEY!  It's been a while since I've had to jump out of bed first thing in the morning and sprint to the bathroom.  Or, WAIT A MINUTE...did you notice that I ate Mexican food two days in a row?  HOLD ON...when was the last time I had a fever?  Or spent a day in bed?  Or had that barbed wire feeling in my gut?

Of course, waiting is not my specialty.  I was not present the day they handed out patience.  I took one look at the line and decided I couldn't wait that long.  So it's not like I'm just going to forget I have this going on and will blithely go about my business.  Instead, I have to harness that expectation, that impatience, which I plan to do by, well, by planning (which is, incidentally, one of my specialties.)  I will start by making a plan for stepping down on my meds, starting with the extra prednisone I started taking before my trip, then getting rid of my regular dose of prednisone, then the Remicade infusions, the azathioprine, and finally the Asacol.  And then I will establish a set of milestones for checking in with myself at various intervals to see how I'm doing.  At one month, how many b.m.'s am I having?  What are they like?  How urgent, how much gas, etc.?  At two months, how long since I've had any aches and pains, fevers, etc.?  At three months, how is my UC affecting my quality of life, my ability to exercise, eat, etc.?  When's the last time I had to make use of my emergency undies kit I always carry in my purse?  Have I had to cancel any social invites lately?

In six months, if all these things are going well, I will be able to say, YAY!  Looks like I've achieved remission!  And if not, I hope that at least a few of these things are looking better than they are today. Say, for example, the idea of going to the dentist doesn't strike fear in my heart because what if I have to stop in the middle of a teeth-cleaning to leap up and run to the restroom? 

A note to all my well-wishers.....I am so pleased by each and every note of support, and even more by the amazing outpouring of HUMOR you all have brought to the proceedings.  Thanks for making me giggle with images of you eating a hearty breakfast of gummy worms in solidarity on the day of my ingestion, thanks for musing aloud about what I might say to the customs agents, thanks for all the Devo "whip it...whip it good!" jokes,  the insistence that we have a welcome home party for my new friends, and on and on.  The most enduring joke has been John's insistence that I now refer to myself in some sort of menacing third person plural, such as "The Army," or possibly, "The Union."  For example, "The Army would like another cup of coffee."  Or "The Union is going to read for a while before bed."  If I didn't have any power complexes before, I surely will develop one now.

But back to the point at hand, I do honestly feel that everyone's health is affected by positive relationships and "vibes" (for lack of a better term), and so I'm really grateful for all the good energy that comes from knowing people care about me and are not afraid to show it!  So thanks, one and all!

Final preparations

We're in the last 48 hours before I leave town to pick up my new friends, the helminths.  Lots of little last minute stuff going on here, like assembling a wardrobe completely comprised of wool and down (it's been awfully cold in Europe this winter), making my transportation arrangements, getting my dog and cat sitting settled, etc.

These are the kinds of things we all do before a trip, but I'm also doing some preparing for the health journey I'm going on.  I'm spending a lot of time (too much time, really) thinking about how I feel about this big leap I'm about to take.  Funny how I've been planning for this for almost 9 months now, but I still wonder, is this the right thing for me?  Don't worry: the answer is definitely "YES!" It's just that I am such an indecisive little ninny that I question EVERY decision right down to what cheese to put on my cheeseburger.

Which brings up another area of preparation: diet.  Since travel is so difficult on my system, I try to watch my diet for at least a few days before I go to give myself the best possible chance to do well while on the road.  So I had some "farewell french fries" on Sunday, but now it's all about easy to digest grains, fish, and fruits.  Plus coffee.  You know I'm not going to give up my coffee, no matter how bad it gets!

Another strategy to help me cope with the stress of travel is to try to get some extra sleep in these days before take off.  So I'm trying to get to bed earlier and am squeezing out as many extra minutes before I hop out of bed in the morning as possible.  (But if you follow my Facebook page, you know I was posting around 11:00 last night!  At least I was doing it from bed....)

The last preparation is in terms of medications.  I have a stash of enemas, which are a liquid form of a pill that I take 3 times a day.  The enema works as a topical application of the same med, and is typically taken at bedtime so you can (hopefully) retain it for a full 8 hours.  I was planning on doing one of these each night of the last week before I go, but honestly, I just couldn't face it.  Of all the treatments I've been on, mesalamine enemas suck the most.

So instead I am adding a foam enema in the a.m. and a suppository in the evenings--much easier treatments to swallow, as it were.  Yesterday I had my latest Remicade infusion, so I'm good to go there.  And starting a few days ago, I doubled my dose of prednisone from 5mg to 10mg.  For those who know the evil that is prednisone, that may not sound like such an astounding dose, but I am so freakin' sensitive to the stuff that it is rocking my world: my appetite is way up and I'm not sleeping as well.  Soon, I know my face will start to balloon out, and I will get even a little more testy than usual.  So this coping mechanism is at odds with my "eat better and get more sleep" strategies, but this one is important because it might help stave off any possible reactions when we introduce those cute little worms later this week.


The last preparation is responding to all the nice thoughts and kind wishes of those wishing me well on my journey.  I've been hearing from everyone: family who have been with me from day one, friends from high school, college, and beyond, other "helmith-ers,"co-workers, former co-workers, and even co-workers of former co-workers!  All have shared with me their assurances that they are behind me 100%.  So if the power of positive thinking has anything to do with the success of this treatment (and I'm certain it does) then I am well prepared to take this on.


So think of me when you wake up Saturday morning--that's about when I suspect the deed will be done!  And then be prepared to keep standing by me, because remember, this is a JOURNEY I'm on, not a destination.


Thanks, all!


P.S.  I added a link to a really good website under For More Information, to the right of this page.  If you're looking for an intro to helminthic therapy, please check it out!