Food Fight!

"Eating good for my belly is crushing my soul."--Me, as I stared down my third bowl of quinoa gruel in as many days.

Ahoy, mateys!  I can't believe it's been a month since I last posted, but I haven't had much news to report.  That is, unless you count numerous episodes of public pooping, overnight cramping, or rectal bleeding as news. 

You do count all that as news?  Oh.  In that case, I'd better fill you in....

Once I came back from my trip to the mountains with my friends, I had a little "come to Jesus" talk with myself about getting on track and doing my part to help my little "passengers" achieve their mission.  To me, that means watching my diet, and that, in turn, means eating smaller meals, eating less challenging foods, and cutting way back on sweets, wheat, and caffeine. 

So for the last few weeks, I've been trying to follow this advice--with a break for St. Patrick's Day--but it hasn't done me any good, at least not in terms of easing my symptoms.  Still running to the bathroom at inopportune times, still getting tummy grumbles after eating anything at all, still having unexplained cramping overnight and seeing too much blood in the toilet.  I'll admit I'm not the most stringent follower of these dietary guidelines, but shouldn't the modest improvements I have made be yielding any kind of benefit?

(Many of my IBD friends will read that and shake their heads, and as they sip delicately from their small cup of organic green tea with kombucha brewed for exactly 3 minutes with pure spring water, they will think to themselves, "C'mon Nancy.  You know there is no 'try.'  There is only 'do.'" And others will gulp from their super grande moccachinos and think, "Yeah, it's just not fair.")

Meanwhile, I have been continuing to drop my prednisone dose by one mg./day per week and am now down to 5 mg.  However, I've decided to settle in at this dose and see if I can stabilize before I go any further.

Sure, it's a little discouraging.  I am now about 9 weeks out from when I introduced those little whipworms into my system, and although I know darn well that different people react differently, deep down, I thought I'd be one of those people who started to feel better within just a few weeks.  But now that I think about it, I'm not even sure how that's possible, since those little buggers are probably not even all grown up and attached to my colon yet.  If you check out the lifecycle of the whipworm on wikipedia, they'll tell you it takes up to three months for those babies to grow up and go to work.  (For what that's worth.)

But what I'm dealing with now is not even so much about what's taking those worms so long to get going, I'm in the throes now about worrying about the persistence of some of the worst of my symptoms.  Had there been no worms and I was having these symptoms, I'd probably be in my dr.'s office right now talking about where to go now, even though I know the answer would basically be a shrug of the shoulders and a sheepish, "Maybe we should increase your prednisone....?"  So instead, I'm just kind of trying to ride it out, hopeful that in just a few more weeks, things will be looking up.

In the meantime, life is getting in the way of this little medical experiment of mine.  After leaving a job interview last week, I found myself driving to my next appointment and realizing that I had probably 2 minutes to find a bathroom.  Well, guess what?  I didn't make it.  So then, instead of being on my way to that appointment, I found myself turning the car around and driving home to clean myself up and change my clothes before getting back on track and finishing my errands as if nothing had happened.  I got through the afternoon and evening okay, but the next day was AWFUL...I spent the whole day in bed.  I was achy and had tons of muscle soreness.  My brain felt foggy and I was exhausted.  Oh yes, and dehydrated.  So dehydrated.

Once I felt better, things got back to normal a little bit.  This Sunday, John and I even resumed our weekly trip to the grocery store via bicycle.  I love that little warm weather ritual.  But of course, we got not halfway through the store before I had to make a mad dash to the bathroom.  And then, not 10 minutes later, I had to abandon our cart in the dairy section for another trip to the loo.  Imagine all that, and then realizing, "Hmmm.  And now I have to ride a bicycle loaded with 20 pounds of groceries home."  At least it's only a few miles, and all downhill, at that!

All of this makes it sound like things have been unrelentingly bad for the last few weeks, and that's just not true.  It's just that I have had a few more "bad days" and those days have been a bit worse than I'm used to.  Even though I didn't feel great yesterday, I was able to walk my dog without incident, and even jog around the neighborhood park a little.  But, on the flip side, I didn't feel confident enough to go for a long walk with a friend.  Today I have another job interview, and you'd better believe I'm going to leave myself plenty of time for a bathroom stop beforehand AND make sure I visit the loo again afterward.  But then I'm meeting a friend for a drink this afternoon--and who knows, if I'm feeling okay, maybe I will sip on an actual DRINK.

As I've been saying from the beginning, my friends, this is a journey I'm on.  And right now, it's a roller coaster ride more than anything else.  As usual, I'll just hang in there and keep trying to live a normal life.  Or some semblance thereof.

There Is No Free Lunch

I am reminded today that just because I have these awesome little creatures doing their best to bring my immune system under control, I am NOT off the hook for doing MY best to bring my immune system under control.  That is to say, I am still responsible for taking care of myself; I have not abdicated that responsibility just because someone else is on the job.

To explain: I just came home from a long weekend with friends in the mountains.  And although we sell it to ourselves as four days of playing in the snow, the truth is (for me, at least) that it is an extended opportunity to eat, drink, and shun sleep in favor of booze-fueled late night snowshoe expeditions.  I don't want to make it sound like I run with a pack of gluttons, but the truth is, we love good food, good drink, and each other enough to spend days on end indulging ourselves, with breaks in the action for a little skiing, a little sledding, a little snowshoeing, etc. 

I was nervous about this trip.  I had no idea how my tummy would deal with all the mayhem I was about to throw at it.  I was worried how I would do in a house of 16 adults, 8 kids, and 7 dogs (and three bathrooms.)  Add to that the fact that my safety net, John, wouldn't be there, and I was not sure what to expect.  But for the most part, my delicate system dealt pretty well.  Sure, my tummy hurt pretty much the whole time, I passed a fair amount of blood every time I went to the bathroom, and I felt the need to back off some of those outdoor activities, given the uncertain proximity to the loo.  But there were no "urgency emergencies,"  I didn't have to jump out of bed in the morning to run to the bathroom once, and I even got to enjoy my morning coffee without much ado.

And now, I ask you to re-read that paragraph and tell me what's wrong here.  Go ahead.  I'll wait while you re-read it.

Done?  OK, so did you notice that my whole attitude was about what my tummy did to me to make my life a challenge and not at all about what I did to make life hard on my tummy?  Let's start with the most obvious: food.  Who in their right mind thinks they can eat two Thanksgiving-sized meals a day, plus plentiful snacks, without repercussion?  And really, I shouldn't be chugging the amount of coffee that I did on this trip, but it seemed like the thing to do, especially since I was chronically tired from going to bed a little too late and tossing and turning a bit due to the stomach cramps.  Which brings up the issue of sleep: I know as well as I know my own name that getting too little sleep, and especially in a "travel" situation, is asking for trouble.  At least I was smart enough to not put myself in the situation where I would need to find a bathroom ASAP out in the middle of a snowshoe hike, but maybe there would not have been any reason to fear that if I had not filled my system with lots of rich foods, a fair amount of beer, and plenty of salty/sweet snacks.

Given all this, I'm pleased that I survived the weekend OK, but the uncanny thing is that I was not 15 minutes into the hour and a half ride home before I had to find a bathroom ASAP.  The poor ladies at the gas station were totally startled as I came flying into the store and flung myself down the hall to the restroom, where I locked myself for a good 10 minutes.  I got home fine after that, but my whole afternoon was one trip to the bathroom after another until I finally fell asleep on the sofa.  Sometimes, my body gives me a break when it needs to, but the bill always comes due.

So I got my come-uppance (and I'm still getting it today, unfortunately.)  And even though I know this already, I am reminded oh-so-vividly that I am still responsible for taking care of myself, and my whipworms are just one tool I have to do that.  I still need to watch what I eat, get a decent amount of exercise, and heed my body's cries for ample sleep.  If I don't do these things, or at least make a good faith effort, it will not matter how many pills I take, how many Remicade infusions I get, or how many helminths I have burrowing into my colon--I will still be sick.  It's just a reminder that the Union is a team, we're all working toward the same goal, and it's no fair if I sabotage the team's effort by not controlling the things I--and only I--can.

The next time I'm indulging myself (and let's face it: there WILL be a next time) I'm going to remind myself that as much as I love good food, good drink, and good times with good friends, there is no free lunch.  You're gonna pay, and maybe, just maybe, it's better to pay upfront by missing out on a few big meals, a couple of tasty beers, or a couple of late nights than it is to make life that much harder on the Union.

Breaking Up is Hard to Do

Yesterday I had my first check-up with my GI doc since inoculating (is that the right word?) myself with 1,250 whipworm ova.  To say that he is not supportive of this treatment would be, well, putting it mildly.  When I first discussed it with him last fall, he kept coming back to the same line: "But it's a PARASITE!  You'll have a PARASITE!"  So I knew going in to this appointment that this was going to be a tough conversation.

Part of me thought that even though he can't really get behind this, he should at least be intrigued by the possibilities, and since I had already done the deed, he'd be interested to see what happens.  But he really wasn't.  His immediate reaction was to ask about all my meds and current symptoms, becoming concerned when I told him I've had an uptick in my symptoms and actually increased my prednisone.  His thought is that because I am so immuno-compromised through my meds, the introduction of the parasite is going to render me completely unable to fend off even the most minor of infections. (To which I say, how come I haven't had so much as a sniffle while John has been fending off one lousy cold after another this winter? Why aren't all the scrapes and scratches I keep getting from trying to keep Scooby the cat entertained turning into raging, pus-y infections?)

Anyway, I told him that first and foremost, I wanted him to know that if he is uncomfortable continuing as my doctor, that's fine, and he should just tell me and I'll move on.  He said no, he's not going to toss me out, but now that I've "gone and done this to myself," his main job is to protect me and look out for potential problems.  Meanwhile I'm thinking, "What about the potential remission?  What about the potential upside?"  But he just doesn't see it.

Through the course of conversation, I realized that even if I have a miraculous recovery, he will not believe it's due to the parasites.  "It's a totally uncontrolled experiment," he says. "Maybe you would have just gotten better on your own anyway."  Now, I ask you, my friends, how likely is it that I would have a spontaneous remission on the exact same medical regimen I have been on for more than a year?  I just felt like this is crazy talk.  I don't think you have to be a "man of science" to see that just doesn't make any sense.

But I get where he's coming from.  This is a guy with a background in clinical research.  He has a lot of respect for that process, and told me that even when new drugs go through this incredibly rigorous process of clinical trials and FDA approval, they could still turn out to be dangerous.  (Hmmm....like, say, Remicade?)  He says that he's not giving this, or any other alternative treatment, a knee jerk negative reaction; he just holds everything--drugs, acupuncture, probiotics, dietary changes, etc.--to the same standard of proof that it works and is safe.  He also just can't understand why us "lay people" (I think he means "patients," you know, the people who deal with this crap every single day) are so drawn to "natural" treatments when they can be more harmful than anything put forward by Western medicine.


That was the comment that pushed my buttons the most.  I just burst and said, "Look.  It's not that I don't respect Western medicine.  I've had this disease since 1997 and in that time have tried every single medication my doctors have suggested.  But in the last two years, my disease has become less manageable while my options have diminished.  I have sat with you in this very exam room every three months begging for ideas of what to try next, and you have nothing to offer.  I even advocated for a higher dose of Remicade at more frequent intervals, which you originally balked at.  So don't make it sound like I don't want to give what you're peddling a chance.  Now I'm at the top end of the dosage for this risky medication that isn't working anymore and you can't understand that I'm looking elsewhere. 

"And another thing: don't tell me that just because it has FDA approval and is administered in a nice shiny clinic by well-trained nurses that Remicade is not just as much a roll of the dice as infecting myself with a parasite.  In my case, Remicade is a roll of the dice that we know isn't working anymore.  Jury's still out on the parasites."

OK, so, my rant wasn't anywhere near that articulate, and there was a little bit of sniveling in there as I tried to get my emotions under control, but I think he was pretty clear on where I stood.

So where do we go from here?  Well, as I was leaving, I didn't say that I was LEAVING, but I am seriously thinking about pulling up stakes and moving on.  In the meantime, he is consulting colleagues with experience in infectious diseases to see what other systemic dangers I am exposing myself to.  I offered (twice) to connect him with the web resources I have been using to gather my info about this treatment, just so he can see where I am coming from, but he's not interested in my internet hoo-ha (my words, not his.) 

Problem about moving on is it's not easy to find someone who is a good fit.  I want a good GI who is up to date on all the Western medicine stuff, and who will work with me as I go through this other treatment and whatever else might come down the pike.  They don't have to be all for it, but it would be nice if they were at least a little bit curious and hopeful about the potential outcome rather than focusing solely on what can go wrong.

Through my work with CCFA, I'm lucky to have met a lot of really great local GI's and I've talked "offline" to a handful of them about this treatment, if only in very hypothetical terms.  I did find one who seemed very intrigued, but unfortunately, his practice is about 75 miles from my home, so that doesn't seem very practical.  Because this treatment doesn't have the blessing of the medical establishment, it's hard to know what a doc might really think about it until you get behind closed doors with them.  One guy I know, a fellow "helminther," suggested that those who find a "worm-friendly" GI mark their doorways with an X or something so the rest of us will know who's OK.  Kind of an "underground railroad" for helminthic therapy.

Since it's not really practical to go looking around doctors' doorways for X's either, I will probably start making some appointments to interview prospective docs in the next few weeks.  And though I really want to find a good GI, I will probably expand my search to include a few naturopaths or other practitioners who might be more open to looking at the whole picture.  (My mother, the RN, is probably spinning in her grave at the very idea.)  We also have a center for integrative medicine here in town--maybe I'll give them a call and make an appointment.

But I do know for sure that life is too short for me to spend any more time with someone who's not behind me and my quest to feel better.  Breaking up may be hard to do, but it's not as hard as beating your head against the wall.

One more note just for my friends and family: So many of you are so super-supportive, it gives me the strength to know I deserve better from my medical team, that is, the people who are actually getting paid to care about how I feel.  But once in a while, you will use words like "inspirational" and "brave" to describe my fight, which makes me uncomfortable.  To just let you know how inaccurate that description feels, this encounter with my doctor left me in tears not once, not twice, but three times.  Once, in my car driving away from the office.  Twice, recounting the highlights of the appointment to my dad.  And thrice (Conan O'Brien would be so proud), explaining to John why I'm so frustrated.  What would be brave, to me, would be to get over it and move on.  To grab hold of this opportunity I'm giving myself to feel better, no if's and's or but's, and don't let anyone get in my way.  But that's not what's happening.  Until it does, I guess I'll just keep on keepin' on.

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!