Miles to go

Progress is a funny thing. somedays are great and others, a mess - but who can't relate to that?

I've been gaining weight, more and more. Last week, my BMI was as close to "normal" as it's ever been. Most of my running clothes are getting pretty snug, and even my feet are getting bigger - got some blisters on my toes from running shoes that are now a bit snug. Most of my rings don't fit any more. This is getting expensive. I don't have any pants that fit. I've always fallen into the "leggings are not pants" camp - however, after checking multiple stores and trying on more pants than I care to count, I may be revising my position. I've been finding myself in skirts and dresses more often. On Wednesday, it took all of my effort to not leave work early, sighting painful pants. Is that a good enough reason to leave work? "Sorry, Boss, I gotta go. My pants hurt."


My running is pretty pathetic by my former standards. At this point I don't care. I ran around Lake Monona last weekend for the first time since last June. It took me a long time. Very long. But I did it. I did not even call a cab or just decide to check into a hotel along the way for a nap. I won't lie, I looked for a nice place to nap, and probably made it home just because I wanted to take a nice nap. I'm confident that my May marathon is gunna be ugly. My goal is to get healthier, not faster. It is my hope that if i get through this, I will find myself in better shape than I would be otherwise.

I am in a better place than I was this summer, but as Robert Frost says, miles to go before I sleep, miles to go before I sleep.

Do These Pants Make My Butt Look Big?

OK, probably not.  I don't think anything will ever make my butt look big.  But, the good news is that I'm gaining weight.  I've put on over 15 pounds since I was at my sickest.  I am still under weight, but these 15 pounds are a ~huge~ improvement.

When I got dressed this morning, I went through about 4 or 5 pair of pants until I could find some I was able to wiggle into - and zip/button.  Really.  Pants that used to be too big would not even go on, let alone close.

I finally found a pair of pants that used to require a belt and safety pin to keep up - and today, I had to suck it in to get them to clip shut.

None of these jeans fit anymore!

The largest grey pants on the bottom had to due for work today.

They used to require a belt and safety pin.

Today, they were pretty tight.

It's ridiculously satisfying getting rid of clothes that no longer fit.  After work today, I went on a little shopping spree and picked up some dresses as I figure that I'll be able to wear them through a few size changes.  Seems silly to buy jeans and assorted pants that I hope to outgrow quickly.  Todays shopping excursion was the easiest it's ever been.  I bought smalls and 2s instead of trying on extra smalls and zeros that are all too big.  

I still have weight to gain, and I'm not in great running shape, but I'm thrilled with the progress I'm making.  

Getting back to running more makes me a little nervous.  I don't want to run off the weight I've put on.  As my miles get up there, I'll just have to make extra eating efforts.  Not that I'm not already making an effort...  I'm thinking about signing up for the Eugene Marathon on May 10, 2015.  I know I won't be in shape to run a fast marathon that soon.  But I bet I could get the distance done in a time that many would call "respectable" for a sickly gimp like myself.  If it goes well, I can target a Fall race to see about a faster time.  At this point, I'm trying to figure out how to live in a body that feels new to me.

I still have a bad stomach day here and there.  Maybe once or twice a week I feel pretty lousy.  But that's a massive improvement over feeling terrible, all day, every day.  

Forward! 

I'm Back (kind of).

Is it weird to say that I'm always surprised when people ask how I'm doing?  People actually care and ask about me?  Thanks!  Y'all make me feel so loved.

I've been back at work for about two months.  The first couple weeks were ugly, I felt terrible and wanted to die under my desk.  But it got easier bit by bit.  My body adjusted to sleeping less than 12 hours a day, and eating normal food.  I've gained back all the weight I lost when I was at my worst, and even a couple extra new pounds, so that's pretty awesome.

In passing, my doc mentioned in a very off hand sort of way that L-Glutamine sometimes works for people with my symptoms.  After trying everything else, I gave it a whirl, and it's been a huge relief.  I was expecting very little, thus I put it off because I figured it would do less than thinking happy thoughts about poop.  I love it when I'm wrong.  I'm not "cured" but instead of being sick every day, 4 times a day, I have a rough go of it once or twice a week.  I'm eating whatever I want, I don't worry about dairy, gluten, blah, blah, blah.  It's liberating, really.

Running has been happening again.  I use the term "running" loosely, in reality, I go jog for a couple miles now and then.  And I head to yoga from time to time.  Sure, I'm going like 9:30-10:00 minute pace, but it helps me feel more like myself, and for that, I'm grateful.  I've got grand plans to run the Minneapolis Marathon this summer.  I've got some time.  At present, the goal is to get to a place where I'm ready to start training in January.  And January is surprisingly close.  I'd love to PR, but in reality, just finishing with a respectable time would be huge for me right now.

Hi Gluten, I've missed you!

Oh, happy day.  If I manage to be incredibly consistent taking my enzymes, it would seem, I can digest gluten again.

I started experimenting slowly, basically by letting restaurants cross contaminate my food.  Then, I went to Bluephies with Leah, ordered a veggie black bean burger with no bun and a side of french fries, which I knew would be friend in oil that had fried gluten.  When the order came out, the fries were battered.  After peppering the waitress with tons of questions, you'd think she'd mention that the fries were coated in gluten.  But, I decided to be brave and eat 'em anyway.  Mainly to see just how sick I'd get.  I didn't get sick.

After another week of adherence to my enzymes, I upped the test.  Took myself to Hilldale.  Went to the Dumpling Haus (why an Asian place spells the name the German way, I'll never know) and had a bowl of the peanut glazed noodles.  THEN,  I took my gluten filled belly down to the grocery store and snagged a package of Carl's cupcakes.  You know the ones, with the raspberry filling and butter cream frosting.  Those.  Yum.  I took the cupcakes home, and ate one.

Guess what - I felt fine!!!  And I still feel fine.  I can eat gluten!!

I'm still adjusting to some other meds that make me pretty tired, but once I get this all figured out, I think life will get more comfortable.  

I may need to tote pills around with me wherever I go, but I'm starting to be OK with that.  

For those interested in the details, I take RX Creon, it's pretty expensive and the strength my doc set me up with is not quite strong enough for a large meal.  So, I take one RX and one OTC pill.  The OTC pill is called Enzymedica Digest  - in Madison I found it at Community Pharmacy, but it can be found on line for less, and in larger quantities.  The ingredients line up pretty darn closely to the stuff my doctor prescribes.  The main difference is that the OTC stuff is much cheaper, a bit less potent, is plant sourced, contains a few extra enzymes to help with the digestion of dairy, and the pills smell kinda funny.  I take a pill every time I eat, even snacks.  I guess if I were just having juice, I'd skip it.  

I am looking forward to seeing my doctor.  The pills I'm taking contain digestive enzymes, enzymes a pancreas ~should~ be producing.  On the CT scan I had done a while back, my pancreas looked fine.  So that would indicate I don't have something terribly sinister going on with my pancreas.  Which is good.  But why do I need these enzymes to eat?  If I skip a dose, it's apparent.  I had some more blood drawn yesterday to check pancreas function.  Hopefully those results will be available when I see my doc next.

In addition, I'm back to yoga.  It sometimes feels "safer" than running.  If I need to go to the bathroom, I can always duck out of class; when running, finding a bathroom could be problematic.  Plus, let's face it, an hour of yoga is much easier than an hour of running.  It feels good to be back on the mat after some time away.  It's evident that I've lost plenty of strength, but I know in time it'll come back.  

Progress?

Time has been ticking by slowly.  I sleep a lot, I wonder what's safe to eat, and I'm probably making some progress.

At this point, I'm on what I call a "gluten reduced" diet.  I still can't digest big amounts of gluten, like pasta or a sandwich.  Last week, I made some yummy CSA salsa, and bought what I thought were my usual blue corn tortilla chips.  Turns out I grabbed the 8 grain chips, which included corn, barley, wheat, rye, and a few others.  I was frustrated - 5 minutes before Packer kick off, fresh salsa and possibly "poison" chips.  I thought about running to the store, but instead opted to eat the chips and salsa I had one hand.  I was fine! This causes a lot less stress.  I don't have to freak out if i go out to eat and a crouton touches my salad.  I don't have to worry obsessively about cross contamination!

My doctor, in a sort of "let's try and see what happens" way set me up with some digestive enzymes.  These aren't the kind you can pick up at your local hippy store, made from pineapple and papaya enzymes.  These are the real deal - the kind for people with cystic fibrosis and pancreatic cancer and other such undesirable illnesses; the kind that cost around $280 for a months supply.  They seem to be helping - a lot.

I take a pill before each meal, and the enzymes in the pill help digest the food for me.  After reading the package insert, apparently the enzymes come to me from the pancreas of a pig.  I'm a vegetarian, so I'm not crazy about using pig parts 3 times a day.  But I figure I've been not eating pigs for over a dozen years, so eating just the enzymes to keep me going ain't so bad.  Unless you're the pig.

I was talking with my nutritionist about the new pills, and my curiosity as to why they seem to be helping.  By all accounts thus far, my pancreas is fine.  She says the pancreas is a busy body part, it probably does more stuff than any other organ.  Maybe mine does most of the stuff it needs to, but just slacks off when it comes to pumping out the digestive juices it should be making.  A pancreas need not be full of tumors or gangrene or something to "slack off".  I sure hope it's just slacking off.

In other good news, I've put on a few pounds.  I'm pretty excited about that.  It's always been a struggle, and it probably always will be, but I'm happy for the progress.  Maybe more to come?

Running has also been happening, but just a bit.  It feels good to get out now and then and get in a few miles, without having to worry too much about where the nearest bathroom is.  Running brings a feeling of normalcy to my life, it lifts my mood and makes me happy. It's also been incredibly meaningful for me to be running this time of year.  I started running 20 years ago.  Sure, I took some time off in there.  Running has always been there for me, and it's great to have such a lasting relationship with something that makes me so happy.  Sure, I've been faster and stronger than I am now, but it's important to me that I'm still going.

This past summer, I was all ready to do the Minneapolis half marathon  - but it got rained out, so they allowed me to register for the 2015 event for $20.  I signed up since it was a limited time offer.  In the next couple days, I'll be writing out a plan for that race - looks like they don't have a date yet, but last year it was June 1.  I figure until actual training needs to happen, I'll run 3-6 miles a few times a week and ramp things up when the time comes, hopefully I'll be feeling well enough to do so then.  Heck, I might even be able to do Syttende Mai as a training run.

I'm really happy with the new medicine.  It's the first thing that's seemed to help at all.  Given the expense, I sure don't want to be on them long term - but if that's how it's gotta be, then that'll just have to become my normal.  They don't seem to have any side effects.  Hopefully, I'll be fully functional and back to work in October.  Return to work stuff is up to my doctor, but I'm hopeful.

BYO

Wow, there are a lot of doctors out there!

My GI, Dr. Huber was pretty terrible last time I saw him.  He ran a bunch of tests, and they all came back normal.  Which is good.  I'm thrilled that I don't have Celiac, cancer, Crone's, colitis or any other disease he could think to look for.  So, that's fantastic news, really.  It's expensive, fantastic news.  The follow up GI appointment where we discussed results went terribly.  

Dr. Huber told me that all my results were normal, there is nothing physically wrong with my digestive system that he was able to see and there was nothing further he could do for me.  He then insisted that he refer me over to behavioral psychology - to deal with my eating disorder.  At this point I interjected :  I'm glad you don't find any disease.  But I don't have an eating disorder.  

I work in the insurance industry, and I'm trained to be on the look out for waste.  It's a waste to have me talk to someone about an eating disorder that I don't have.  It's a waste of the doctors time, my time, my money and the insurance company's money to talk to someone for a problem I am confident I don't have.  I then asked if he could refer me to another GI instead; which must have offended him.  He told me he'd been very thorough and had followed protocol running tests and procedures as necessary.  He then told me that he's seen patients complaining of chronic diarrhea - and it turns out they were taking laxatives.  Um, I'm not taking laxatives.He pointed out that people with eating disorders regularly lie about it.   

I changed tactics and let him know that I've been off gluten for a while and it seems to be helping a bit, can we talk about the possibility of gluten issues.  He again told me that all tests come back normal, and there is no physical reason for my body to have a problem with gluten.

I asked him if he was able to help me and he said he had nothing further for me.

I called the nice folks at the short term disability provider and the pretty much told me that if a doctor suggests referral to another specialist, I've got to take it.  So, those are the rules, I'll follow 'em.

But, I did get kind of excited that Dr. Huber pretty much said going off gluten was a waste of time.  So, I had some pasta, and dumplings and a cupcake.  And it was amazing.  Oh, cupcakes, I love you!  Then, two and a half hours later, I decided it's necessary to be off gluten.  Sigh.  I really did want to eat gluten.  

After that, off to see my primary care doctor.  I love Dr. Clevidence.  He actually listens.  And provides relevant feedback, and does not suspect I'm making up symptoms and causing my own illness on purpose.  

He's got me on some digestive enzymes - crazy expensive enzymes.  They are generally for folks with cystic fibrosis.  But Dr. C says it might help me digest some food.  So, the insurance company and I plunked down a bunch of money to see if it helps.  He's also put me on some meds that should help increase my appetite.  I take 'em at bed time cuz, wow, do I sleep when I take those things! I think the appetite stimulant is helping some.  I notice feelings of hunger more than I have in the past.  So, yay for that.

Dr. C also set me up with a nutritionist.  He supports me going gluten free, but we want to be sure that I'm getting the nutrients I need.  

I asked about going back to work.  He wanted to know if I thought I was ready.  I said I felt I could give it a try.  Dr. C. laughed at me.  He actually chuckled.  Told me I'm not ready, we still have more work to do, and my body has more healing that needs to happen.  So, we are looking at late September or early October to return to work.

I met with the nutritionist this past Tuesday 9/1.  I did not get a whole lot of direction, but we did a lot of goal setting, and she asked questions about my history.  It got me thinking.  And it reminded me of all the resources I already have.  I've got everything I need to eat a healthy gluten and meat free diet.  It's just a matter of getting organized.  I'll figure it out.  I've got a follow up with her in two weeks to get into more specifics.

I've also done a little bit of running.  Which you all know, I love to run.  It makes me happy.  Some days are ok, others are...  Not.  I've generally been sticking to around 3 miles or so, and go around 10 minute pace.  I figured this would make me crazy to run so infrequently, such short distances and so slowly.  But, I'm surprised with myself.  I'm ok with it.  I feel like this gluten free body that I live in is not the one I've lived in before.  

I "ran " in the Cow Chip Classic this past Saturday, did the 10K which was really cool, because I've not run that far in about a month.  I also averaged around 9 minute pace.  Normally, I'd be pretty upset with a time like that, but for the body I'm living in now, it's amazing.  I started with three goals in no particular order: finish, don't be last, don't crap my shorts.  All three accomplished.  Although, I'm glad I finished when I did, because I sure had to go visit the blue box of relief when I was done.  I feel like I did a good job running on feel, not thinking about anything else.  At this point, my focus is on healing and healthy digestion, not fast race times.  So, I'm glad I did it, and I'm really happy I listened to my body and just ran without worrying about time.  Felt good.

Sunday, I got to see Leah, which was awesome.  We did a little walking around at Taste of Madison, but then walked over to Picnic Point.  Just doing a lap at Taste was eye opening to me.  I've been eating at home and in controlled environments.  Events like Taste or just taking a road trip are going to be challenges for me.  I'll need to figure out how to bring foods along that I can eat.  Being spontaneous is probably not going to be much of an option from here on out.  So, that's my project over the next few weeks, self sufficient food to go! 

Courage

When not feeling well, there is not a whole lot to do.  Watch TV, movies, read, maybe go for a walk on a good day, text friends, surf the web...

I recently re-read To Kill a Mocking Bird by Harper Lee.  I remember loving it when I was younger, and sometimes those books are worth visiting again.

I found quite a few things about this classic to ring true today.  Some, to society in general, and some to me, specifically.

I assume most people have read the book.  So, here come some spoilers, the central theme is that Black folks rarely get a fair shake when it comes to the law.  Simply because of skin color, or money, or where you live in town, your life is not worth anything, you can be disposed of simply to make someone else look better. Sounds a bit like Ferguson.  Today.  Still today.

One of my habits is rambling.  And my focus here is digestive health, health of the body, running, eating, all that.  So, I'll leave racial tensions, murder and police brutality to those brave enough to take up those topics.

Atticus Finch tells his children: real courage [...] is when you know you're licked before you begin but you begin anyway and you see it through no matter what.  You rarely win, but sometimes you do.

My doctors are trying to help me, I believe they really are.  But our medical system, despite being some of the most advanced in the world is flawed.  A doctor is trained to look for a problem, and to fix it.  Which is awesome.  I'm glad I have access to colonoscopies and endoscopies and CT scans, and blood work (not that I enjoy them) but I really feel fortunate to have access to this stuff in a safe environment.

Before I even took the referral to my GI, I figured every single test would come back negative, all showing up as normal.  The odds of a tumor or something like that in me are slim to none (again, something I'm very thankful for) but being sick, really sick, and having all medical tests show that you are fine, is frustrating, painful, even embarrassing.  Like I'm making it all up, like it's not real.  It feels very invalidating.

But, having diarrhea at least once a day for almost a year, feeling exhausted and having symptoms get worse instead of better forced my hand.

I have to start down this path of doctors and tests, and changing how I eat, and how I live, and how I move, and how I interact with my friends and family.

All signs tell me I'll never have the life I had, I don't expect to be back on top of my marathon game any time soon (grocery shopping is now an exhausting effort that takes the better part of my day).  I don't expect going out to eat, or having dinner at a friends house will ever be the same.  I fully expect that I'll get to a point where I'll be just humming along, and then, WHAM - sick again.

My health care team is working on diagnosing me, but in the mean time, with the support of a few friends, namely, Kelli H, I've removed gluten and dairy from my already meat free diet.  I feel like Celiac Disease (not that I've been diagnosed with it) is one of those things where one is licked, even before beginning.  So many things are out of your control.  Gluten has a way of sneaking into places, even when you are extra careful.  But you have to begin, and you have to see it through.

Removing gluten is indeed helping my stomach.  I'm not "cured" but my stomach is inching towards better.  I'm constantly exhausted.  But, I've begun, I've started down the path of working with my doctors and trying to "cure" myself.  There will be days that will feel like a loss, and days that feel like a win.  But I've started, and I'll see it through.

I'll lean on my friends, my family, and my own inner strength. And a special shout out to Amanda C.  We've been friends since...  Well, it's been a while.  And we've lost touch for more than a couple years.  I'm so happy to have her support back in my life.  I only hope I make her smile half as much as she makes me smile.