Happy Thanksgiving 2012

I know I'm not fully up to date with my posts, I still have a few doctors' appointments to post about, but I just had to post today since it's a holiday.

Hooray, run on sentence!

Anywho, this year I ate a few bits of turkey with gravy, two chunks of sweet potato, and a few bites of stuffing.  It was AMAZING.  The food bounced up and down a few times, but settled rather well after about 30 minutes.  I think the Bentyl and Neurontin are actually helping.  I even got brave enough to try a few bites of pumpkin pie!  That didn't go as well, and my stomach is still not too happy about it now, but I got all of the food to stay down.  I am ecstatic!!

Last year, I was in the hospital on Thanksgiving.  I had a doodled turkey stuck to my TPN bag for my PICC line.  This year I ate real solid food.  I still have to hook up to my PICC TPN tonight before I go to bed, but I think today was a huge step for me.  My morale is way up, and now I have hope for the future.  I got a glimpse of normalcy and it was absolutely delightful!!

I just had to share.

I hope your Thanksgiving was as exceptional and love-filled as mine was.  My mother-in-law cooked a fabulous meal and there was a house full of family.  Everyone complemented me on how well I looked considering all I've been through.  Lots of love and hugs were exchanged.  The future is looking a bit brighter.

Hooray!!  I am so thankful that my health is beginning to improve, and that I have such a wonderful support system.

Thank you all for reading my little blog and caring abut me.  It's so nice to know there's love and support for me here, too.  I'm thankful for you guys, and for the people I can support and encourage through hard times after surgery.  You guys are great <3

VaperCon 2012.... with a PICC...

We arrived at VaperCon a day early for the pre-party.  The Clarion hotel in Richmond, Virginia, was invaded by approximately 800 electronic cigarette enthusiasts.  The vapers.  It was a weekend to gather and hang out with people we chat with online daily, but some we had never met in person, and some we hadn't seen since VaperCon 2011.

I survived Thursday-Sunday.  It was a blast.  We met some great people, and hung out with friends, and got to see all the latest wares from the vendors who had booths set up.  There were hugs and squees aplenty.

VaperCon includes an annual Halloween costume contest.  I didn't enter the contest itself, but dressed up anyways just for fun.  NyanNyanNyanNyanNyan...

Yeah, I'm dorky.  I was NyanCat... that's my trailing rainbow in my right hand, and my PICC bag in my left.  I actually made the PopTart, front and back.  It was my first attempt at crafting.  I think I did pretty well  =)

It was great hanging out with everybody, but I had to run back to my hotel room ever 4 hours to get meds, and I went to the hotel room at 7:30 every night to get my PICC bag hooked up.  Thankfully, my room was just a 5 minute walk from the conference room.  I got a LOT of exercise running up and down stairs since the conference room was on the second floor and out hotel room was on the second floor in the adjoining building.  i did cheat and use the elevator a few times when I was just too tired.

We left on Sunday and I slept in the car most of the way home, waking up only to fish out toll money and mumble a few things about how cold it was.  I pretty much slept all day Monday, too.  Being social is exhausting!

It was really nice to get out of the house though.  I'm so glad we went.  I don't get to do to much socializing anymore.  I already miss the lovely vapers we hung out with, and we're already planning on next year's trip.  Hopefully VaperCon 2013 will be the first one that I get to attend while I'm healthy!!

*fingers crossed*

The Further Adventures of Sickly Kiera...

So, I haven't had the chance to update this in sooo long, I have a whole lot of stuff to write.  I'll try to chunk it into bite-size pieces in case you don't feel like reading it all at once  =)

Well, on October 3rd I went to my surgeon for a routine follow up.  I told him things were pretty much the same.  Abdominal pain, vomiting, tired, same ol' same ol'.  He decided that I looked terrible and said he was reserving a room for me at the hospital.  Do not pass Go. Do not collect $200.  Go straight to the hospital.

Crap.

I went from the doc's office, hurried home and packed a little hospital essentials bag, and got checked into my lovely viewless suite around noon.  My official diagnosis was "Malnutrition and Dehydration."  I was hooked up to an IV of fluids and settled in for an unknown period of time.  Sine I wasn't there for a surgery or any specific procedure, they let me wear my on pajamas instead of a hospital gown, so I was a little more comfy than the usual hospital stay.

After some tests and a CAT scan, more of my favorite Gastrograffin, and lots of failed attempts at eating hospital food, I ended up getting a PICC line again, and after a few days of fluids and PICC line nutrition (TPN), I was released on October 6th.

Now I have the whole TPN hooked up for 12 hours a day for nutrition and vitamins.  My visiting nurse comes out once a week to change the dressing, check the PICC, take blood work, and monitor my weight and fluid retention.  I seem to be retaining fluids in my lower legs.  Some days I have no ankles.  It's weird, but it doesn't hurt.  It's just annoying.  So, they keep adjusting the fluid levels in my TPN every few weeks.

One week after being release from the hospital, we went on a bit of a road trip.  The hubby and I had been planning this vacation for a year, and I wasn't going to miss it just because I had a stoopid PICC line to deal with.

I called the hotel where we had reservations to make sure we could get a fridge in our room.  The two-bed rooms usually don't have a fridge in them... The phrase "Medical Necessity" seemed to help that process.  My TPN and vitamins need to be kept in the fridge, so it really was a must.  The Clarion in Richmond, Virginia, was really great about it and the fridge was in the room and already cold when we arrived.  Win!

I need a bit of a rest, so the whole VaperCon adventure will be in my next update.  I promise to get this blog up to date in the next few days.

Omnomnomnom.... *review*

So, I've always been a fan of the Quest Bars... when I can tolerate solidish foods.  Today, I just got my pre-release order of the new Cravings line from QuestProteinBar.com.  They sold the new bars for a one day, preview kinda thing.  They had a limit of one box per order, sold in boxes of 12.  The Cravings bars sold out in about 12 hours.  Luckily, I was one of the ones that got in on it.  Of course, they arrived at my door today as soon as I was finished my breakfast.  Ugh.  Had to wait a few hours before I could try them.

The usual original line of Quest bars are very firm and dense, without any kind of coating or drizzle, making them perfect for stuffing in your pocket or leaving in the car.  No melty, drippy mess even on really hot days.  The New Cravings Chocolate Crunch Bar is messy.  It comes mashed in a little plastic tray (which I assume they use to shape it) which kept most of the bars in my order in one piece.  They are super crumbly and glued together with a powdery chocolatey substance.  Rather like a loose powdery bad-for-you crunch bar.  I just turned mine over and plopped it onto a plate.

Now, as we all know with anything protein... do not judge by look and smell.  They're actually rather nommy.  I can only eat about half of one at a time, but it's not too sweet with a little bit of peanutbuttery undertones.  I'd definitely order them again once they go into mass production.  I plan on using the broken ones to add some crunchies to my sugarfree pudding or to top my Fage yogurt.  Now I'm just waiting to see what the 4g of sugar alcohols and the "minute" bit of stevia does to my system.  I have a stevia allergy that usually results in airway constriction and a weird itchy tongue feeling.  After eating half a bar, I don't have any symptoms, which is making me absolutely ecstatic.

So, overall, nommy, albeit a bit of a weird texture.  Much better for me than trying to eat a candy bar, and 20g of whey protein to add to my daily goal.  I got really brave and ordered the pre-release of the next one in the Cravings line, too.... Peanutbutter cups.  Now to stalk the mailman...

Just a rant... nothing to see here....

/rant

Preparing for a roadtrip has never been really easy for me.  I stress about everything all the time.  Now, with all of my restrictions and pain and medical crap, I tend to stress even more.  In less than a month, we will be heading down to Virginia for a big convention.  We attended the same convention last October.  Most of the people that we'll see there haven't seen me in about a year.... about 180 lbs ago.  Some of out closer long-distance friends have seen me a few times since then, and most have seen me in a tiny sidecam on a nightly internet show that I frequent, so it won't be a great shock about how much I've changed, but I still know I'm going to hear it.  The "compliments." 

"Wow!  You lost SO much weight!"
"Ohmygod, you're so skinny!"
"You're tiny now!"
"Where'd the rest of you go?!?!"
"You look great! You're so thin!"

Why does this bother me so much?  Out of all the crap I have to deal with, the "compliments" seem like such a no-big-deal kind of thing... but they're not to me.  They get to me.  Horribly.  I am not tiny.  I am still clinically "overweight."  I am not "skinny."  I have loose skin flaps that could aid in taking flight.  I don't look great, I look tired and in pain.  I generally feel like death warmed over, even when I'm all looped out on my meds. 

Since January 2011, I have gone from a tight size 26 jeans to a currently falling off of me size 10 (constantly pulling my pants up since I haven't found a belt that I can wear comfortably).  Sooner or later I'll get around to getting some size 8's and seeing if they fit yet.  My tshirts have gone from a men's 4x to a men's medium (though I still wear a large most of the time).  I understand that I look different.  The human-nature thing to do is to point these things out.  Most people think they're being nice.  Sometimes I think I'm the only person on earth that doesn't like compliments.  Maybe I'm just being a jerk.  Maybe I just never got enough compliments before to feel comfortable with them...

Then you have the not so nice ones.

"You're losing too much weight."
"When are you going to stop losing weight?"
"Aren't your doctors concerned that you're so skinny now?"
"You're going to start looking malnourished soon."

*sigh*

And of course, you have the inquisitive complimenters....

"Wow! How did you lose so much weight so fast?"
"What kind of diet are you on?"
...etc

Some days I just tell people that I do a high-protein, low carb thing.  Some days I explain that it's all due to medical complications.  Bad days just make me say "cancer" and walk away.   I don't think anyone deserves and explanation.  If they mattered to me, they'd already know.  Sometimes I just feel like a jerk after answering questions, so I give the quick reflex answer to nip the conversation short. 

Some of the worst conversations start while I'm in the waiting room at my surgeon's office.  Some chipper, hopeful pre-op decides I look approachable and starts asking me about my "weight loss journey."  I hate that phrase.  I tell them about my sleeve and my complications, I try and point out that I'm the 0.001% and I'm not badmouthing the procedure, but inevitably I walk away from a much less chipper, frightened looking pre-op.  And again, I feel like a jerk.

But I digress...  back to the road trip.  I'm planning my snacks for the week, rationing out meds, making sure I have enough protein shakes, looking into buying some ready-to-drink shakes just to have an easy option on hand.  I'm packing clothes and making sure the kids will be stocked up with groceries and a freezer full of fast meal options...  the whole time dreading it.  I know I'm going to have to listen to three days of  "compliments" that just kill me.

It would be so much easier to be a hermit.

And reading back on this, it seems like such a petty, stupid thing.  I guess I'm just trying to rationalize it to myself, and hopefully someone out there can relate. 

I wish people would just shut up. 

I'm more self conscious now than I was at over 400 lbs.  I'm much more critical of my own flaws.  I have a hard time seeing myself as a post-op.  The mirror and my brain do not hold the same image for me.  I have heard that this is normal and it take a while for the brain to catch up.  I hope it does catch up.... eventually.

/endrant

I've been shrinked!

Well, the surgeon has a good idea about what's been going on.  You see, I still have a bit of the sleeve hanging around, connected further down into my intestines, to supply a tiny bit of digestive juices.  Kind of like what they do in a normal RnY procedure, but much smaller since so many of the complications have each taken a chunk of said stomach tissue.  It's basically the remnants of the sleeving procedure.  My surgeon thinks that the small lengeth of intestines trailing from my leftover sleeve has become impassable, therefore kinking the line.  This may be causing a backup of digestive juices over a long period, thus causing my rain to always regster that I am "full" even though this bit of nonsense is no longer used as my actual "stomach."  Since the line is kinked, but not closed, the spasms will let the fluid release into my operation intestines, causing an overflow to backup into my new stomach pouch, thus causing more pain and spasms.

Okay, sounds plausible. It makes more sense once you see it on a chart and a bunch of random scribbled innards like he had when he explained it to me...

He still wants to get a gastro specialist on board, but every one he has spoken with wants to take my case on as a primary.  My surgeon does not want to give up his primary status on my case.  He said that he wants to see this through until I'm healthy.  So until we can find a specialist that will take on my case as a "consult only" position, we're still searching.  For some reason, most specialist don't want to consult, they want to take over...

Regardless, we're definitely planning another surgery, but aiming for Novemberish.  Hoping to get a specialist on board before surgery number six begins.  My instructions are still the same... heavily medicated, keep taking vitamins, keep attempting solid foods.

My diet is still mainly liquids and cheese.  For some reason cheese sits pretty well... at least it's high in protein and kind of good for me.  I'm still drinking the Syntrax Nectar Sweets protein shakes.  I got crazy and went for variety and ordered their Cappuccino flavor to go along with the Strawberry Mousse and my much beloved Double Stuffed Cookie.  Most days are still two protein shakes and random snacks in between.  On good days, I can eat an individual pack of Just The Cheese chips (Grilled Cheese flavored), or a few almonds (if I spend five minutes chewing).  Those are my solids of choice.  Meats are still not nice to me.  Very, very moist soft chicken will stay down every now and then.  I love days like today when I can eat almost a whole naked chicken nugget (they're unbreaded, roasted chicken chunks that I bake in the oven with some gravy or cream of mushroom soup).

This past Monday I went to see my new shrink.  For those of you just joining us, my stoopid new primary doctor thinks I need a shrink eval, so she won't approve a refill of my anxiety meds until I went to see a shrink.  I made an appointment with the same psychiatrist that did my pre-surg evaluation since she seemed tolerable.

The appointment went well.  I am apparently "very well ajusted and capable of dealing with things on a rational level."  We spent an hour chatting about my surgeries, my complications, my food intake, and my daily routine.  We spoke about pain management and how I'd like to get completely off of my pain meds as soon as possible.  This is when she asked if I had heard of self hypnosis to regulate pain.  What? Huh?  I can do that??  So, feeling like a complete mook, I sat there while she guided me through the process.  I must say, I felt silly sitting there with my eyes shut listening to her talk about envisioning my breath moving through my body, but it actually seemed to help.  I got pointers on how to practice doing this by myself, and sent home with a new appreciation of breathing.

I've been practicing daily at home and I think I'm getting the hang of it.  I have another appointment this coming Monday as a follow up, but the doc said I really don't NEED to continue seeing her if I don't feel it's necessary.  She said I'm dealing rather well with all of my issues, and that my sarcasm and wit are actually a good coping mechanism, and seem to be working for me.  She did suggest that I explain to future new doctors about said coping mechanism, and to try and avoid any references to jumping in front of busses, even if said in jest.

Good advise, methinks.

I'm going to go take my meds and envision my breath now.  My apologies in the update delay.  I still suck at blogging.

Yep... I'm bringing this in...

This pain chart from http://hyperboleandahalf.blogspot.com/ is coming with me to the surgeon's follow up appointment I have tomorrow.  I have been in extraordinary pain lately.  Every time I eat or drink or vomit, I get this vicious kicking/twanging feeling from the center of my abdomen.  It feels like something is fighting to get out!  It's progressively getting worse.  This is really beginning to wear me out.

I will be sure to post a proper update after my appointment.  I have just been couchlumping and steadily taking my pain meds for days.

*FINE PRINT:  Please go read http://hyperboleandahalf.blogspot.com/ ...  She is brilliant.  I hope she doesn't mind me using her poster.  I, in no way, make claim to this image or it's idea.  I borrowed it and very much appreciate the brilliance behind it.

I Hate New Doctors...

My primary doctor has moved out of state.  I liked her.  She got me.  I needed to see a doc since I started getting these little itchy red patches above my elbows.  Most people that lose a lot of weight have skin issues from the loose skin on their abdomen.  They develop rashes and itchies where the "Abdominal apron" hangs over.  Me, I gotta be weird.  I have itchy patches from the loose armflaps hanging down.  Yeah, I know...

So yeah, sure, I'll just schedule an appointment with my old doc's replacement. 

My new primary doc is a moron.  She was nice enough, very cordial and professional.  I explained that my meds were all in non-solid form since I have no stomach tissue left.  I explained that her computer numbers were correct, and I had indeed lost about 90 pounds since my last visit in October.  I told her about the loose skin and my itchy elbows.  She thinks I have exzema.  Really?  Now she wants me to strip so she can look for other patches.  Nope, no other patches.  Just the weird "look, my loose skin hits this spot" patches.  Really, lady, I know what's doing it now how do I fix it!?!?
 
I asked for my anxiety meds to be refilled, since I haven't had them filled since October.  She asked if I was feeling depressed.  I answered with "Well, some days I want to jump in front of a bus, but luckily I'm too tired to get off of the couch."  She didn't understand my sense of humor and now wants me to go see a shrink.  She said "If I give you an Rx for 90 pills, are you sure you won't take them all at once?"  "Geez, lady.  Have you seen them?  They're in individual blister packs with paper backing, it would take me hours just to unwrap 90 of them!"   Again... she didn't get it.  So, now my medical record says that I'm SquirrelNutZipperCrazy and I need a shrink.  My last primary doc would have laughed.  I miss her.  *grumblegrumble*

I think it's time to check my insurance website and see where I can find a new primary doc with some common sense...

Meh.

Nothing really new going on over here.  I have to go to the nutritionist on Monday.  I'm so looking forward to that...  I'm still getting under 800 calories a day, my average day is about 600.  I'm still bringing back 30-50% of my intake, including liquids.  I'm still in a pretty good amount of pain.  Nothing has changed very much.

My "twanging" pain is getting a little stronger.  I can actually watch my abdomen jump sometimes.  It almost feels like a good, strong baby kick.  When I press my hand to the center of my abdomen, where my "stomach" actually is now, I can feel my heartbeat... kind of like when you sprain your ankle and it throbs every time your heart beats... Yep.  Like that.  All the time.

I'm going back to see the surgeon for a follow up on September 5th.  Until then, I'm just trying to stay medicated and keep eating.  I'm still on mostly soft foods and protein shakes.  I have figured out that I can eat almost 1/4 cup of peanuts or almonds at a time, but I have to chew incredibly well.  They always come back up, so chewing is important or it's kind of like vomiting gravel.  Ouch.  Vomiting almond butter isn't quite as bad.

I never thought that vomiting everything I eat or drink would be my "normal."   I've done this for so long that I'm used to it.  I'm surprised when food or drink DOESN'T come back up.  I've grown accustomed to my medically induced eating disorder.  I suppose sooner or later I'm going to have to face the toll that this past year has taken on my dental health... I've put that on the back burner for now.  No sense getting the damage repaired only to keep vomiting for another year...

I'm still rather down about the whole situation, but I have climbed most of the way out of my hole.  I know that there are things that need to be done, kids that need to be tended to, laundry that needs to be washed, etc.  I'm functioning pretty well on most days.  I'm still thinking about going to talk to a shrink, but I haven't convinced myself that yet another doctor would help things yet.  I'm very lucky to have a good support system in place.  My hubby and my in-laws are great, very supportive and they listen to as much as I can vent and whine.  I really don't know what I'd do without them.

So, there is my non-update update.  Nothing new to see here.  Carry on.

New Comparison Pic...

So, I decided today to update my MyFitnessPal.com profile pic since it's been quite some time.  After putting a new pic up, I got a few requests to bring back the goofy hat that I wore in my old avvie pic.  I went hunting around and dug out the raccoon hat to comply with the requests.  After putting them side by side, I think that my old pic looks better.  I miss my cute chubbiness.  This makes me kind of sad.  In less than 10 months, my face has changed so much... and I'm not sure I'm happy about it.  I put my MFP avvie back to the old pic.  The new one makes me kind of sad...

You Can't Call it a "Party" Without Balloons...

I'm so horrible at keeping up with this blog.  I have been sucked into playing Minecraft on a private server with a few of my fellow vapers (e-cig enthusiasts), so I've been wasting time digging holes and building a homestead.  Well, when I'm able to sit at the desk anyways...

Not much has changed.  I'm still playing paperwork bingo with the specialist at HUP (Hospital of the University of Penn) and waiting for his office to call.  They have to review my file and decide if they want to accept my case.  My surgeon seems to think that possibly someone outside of his local network may be able to think outside of the box.  I'm hopeful, but very pessimistically so.  I'm not very up and cheery lately.  I'm just getting downright tired of feeling so awful.

I still have the random rubberband twang feeling going on.  Sometimes it's just a little twitch, other times it leaves me curled up in the fetal position.  I never know when it's going to get to that point.  It doesn't seem to coincide much with eating or drinking, though eating solids can make it a little worse.  Any kind of physical activity seems to make it act up a bit.  But there are times where I'm just being a couchlump and it will decide to say hello and kick my arse...

I called the surgeon's refill hotline today to get my pain meds refilled.  If the pharmacy has to order them, it'll take me two days to get them.  I have to wait two days to go pick up the Rx since my meds are of a narcotic origin, so now I'm in a panic about running out of meds.  I know I can ration myself and make it through, but being low on meds makes my OCD act up and makes me slightly paranoid.  I still don't like taking pain meds, but they make my stomach accept foods and liquids a little better.  More meds = less pukey.  Less pukey is definitely a good thing.

I'm still bringing back about 50% of my intake, but most things stay down on the second or third try.  Protein shakes have been my staple.  I'm still not very brave about solid food.  I miss it sometimes, but solids are more of a hassle and cause more pain when they come back.  It's just easier to drink a protein shake...

Friday night I had my second experience with intestinal impaction.  I swear this is what is going to end up killing me.  I had no abdominal cramps or bloating like I did last time, so the impaction caught me completely by surprise.  It must have taken me at least an hour to get that cleared up, so I've just been exhausted all weekend.  It's amazing how tiring pooping can be.  There, I said it.  Though everything is tiring when you average 600 calories on a good day.

I'm starting to think I'm just stuck like this.  Possibly I did something so horrible and heinous that this is my karma payback.  I wish I could figure out what I did...  The negative thoughts are getting harder and harder to ignore.  I'm afraid I'm going to be wallowing in my own self pity soon.  I'm trying to avoid that.  I know that no good can come out of it, but it's just getting to me.  Maybe I'll go out this week and get myself a bouquet of balloons so I can have a proper pity party and get it out of my system...

I'm sooo sorry, kitteh....

So many things going on at once now, I think my head is spinning...

After the follow-up with my surgeon, he has decided to put together a think-tank of specialists from Temple University, UPenn, and Johns Hopkins to see if they can come up with new ideas.  I'm currently playing phone tag with UPenn, trying to get a consultation with one of their bariatric/GI specialists.  My surgeon has set this up as a second opinion case, not a patient transfer, so it's hard to get in to see a new doctor when the doc knows you won't be his/her permanent patient.  It took a few phone calls worth of sad, angry crying to get them to accept me as a patient without having to sit through their "required introductory seminar."  I let them know that the post-op girl puking at the back of the room may scare off prospective patients...  they finally listened.  So, now it's just a matter of signing releases, transferring paperwork, and getting all the background info up to the UPenn specialist.  Hoy...

I'm still taking my Rx vitamins and getting close to, or over, my 60g of protein a day.  My system has now suddenly decided that it no longer appreciates the thick, milkshakey texture of either Chike or Syntha-6 protein shakes.  I can't keep either one down.  Not with water, not with milk, not with almond milk, not with or without ice... Dammit.  They tasted the best out of all the protein shakes I've tried.  Fortunately, I still have a metric crap-ton of samples laying about, so I've been on the hunt for a protein shake that tastes tolerable and doesn't make me puke the whole time I'm trying to drink it.  My "stomach" has decided that Syntrax Sweets shakes are good. 

After depleting my sample supply, I decided to use up my drugstore.com dollars and order some Syntrax Sweets (in Strawberry Mousse and Double Stuffed Cookie flavors).  Thanks to my extensive time for research and my savvy shopping skills, I managed to get 2 ginormous canisters of Syntrax for about $30.  Yeah, I know.  Drugstore.com was the cheapest prices (factoring in my drugstore.com dollars) and I know they have crazy fast shipping.  Ordered 'em on Saturday, the arrived here this morning.  I had a few samples of the Strawberry Mousse (which tastes to me like the evil pink powder with the bunny on it that you mix into milk as a kid), but I went off of the rave reviews from MeltingMama.net for the Double Stuffed Cookie flavor.  Holycrapmonkies.  Seriously?  The powder itself is delicious.  Yep, it smelled so good, I licked the powder off of the peel-off seal from the top.  I'm THAT classy, I know.  Envy me.  But yeah, it still has the slight "protein" smell, but man, it's tasty.  The Syntrax Sweets (which is their candy/bakery/creamy varieties) have weird instructions, but basically one scoop in 8oz of 2% milk is my measurements.  One scoop has 23g of protein.  They mix up rather thin, which my "stomach" likes now, but they lack much of that protein-ish taste.  Of course, now I have several opened and unopened cannisters of Syntha-6 and Chike to put into storage until my stomach throws me for another weird loop...

I'm trying to "take it easy" as per doc's instructions, but I'm finding it more and more difficult to sit on my arse.  My husband yelled at me last night... he said "You just can't JUST SIT, can you?!?!"  Yeah, nope, I'm tired of being sick.  I'm tired of just sitting.  Though I did get a bit of a wake-up call on that.  I was moving things around in our storage room, looking for stoopid Brita filters of all things, and got myself worked up into a cleaning frenzy.  Our air conditioner was down for two days, it was hot, and what do I decided to do?  Yep, Malnourished Cleaning.  Needless to say, after about 30 minutes of sorting and organizing, moving, throwing, and cleaning up after a leaky bottle of Tide, I started feeling horrible.  I was dizzy and sweating like a maniac.  I stood up to dispose of some papertowels full of Tide, when all of the sudden I went all tunnel-ey.  You know, when your vision starts to get fuzzy and dark around the edges?  Yep.  I felt like I was falling, and my vision was going fuzzy and black.  That was it.  Scared the bejeebies outta me.  I told the youngest son to finish the last of the picking up and went promptly to the couch for a cold beverage.  Two sips of cold water later, I leaned over and puked on the cat.  I'm still apologizing to said cat.  But, needless to say, I'm not really doing much today.  I thought I was going to have a stroke or a coronary or something.  Cripes.

So, here I sit.  On my arse.  I figured since I'm not doing anything, I might as well update my blog.  And now that I think about what happened yesterday, maybe I should get up and get the cat some treats...

Yep, I have medical proof that I'm a stubborn bitch...

My visit to the Weight Management doc today didn't go as well as I thought... My blood work came back pretty bad.  I'm deficient in Vitamin D, B-12, Thiamine, and protein.  My levels are scary-low.  The doc said "The only reason you are still able to function is because you're a stubborn bitch.  I've seen better levels in ICU patients."   Keep in mind that this doc has seen me from the get-go and knows how I am, so I was not offended in the least...

I'm supposed to pay close attention to any numbness or tingling feelings, and watch for any difficulties or signs of a stroke.  Apparently malnutrition can make you more susceptible to stroke.  Great.

I got an Rx for Vitamin D 5000 IU once a week (little gelcaps) and was told to discuss my Thiamine levels with the surgeon.  I have to take twice my usual dose of B-12, and try and get more protein in.

I have a follow up with the surgeon scheduled for tomorrow, so I'll write a more in-depth post after that one.  I've got nothing quirky or snarky to add.  This kind of scares me.

Happy Independence Day...

Another glorious holiday... I declined a few invitations to the usual barbeques and such today.  Sitting there watching people drink massive amount of alcohol and eat food that I long for doesn't really appeal to me anymore.  My husband and the kids decided to stay at home with me.  Not in the mood for the typical Fourth of July fare, the hubby asked that I make something different, so I made them oven fried ranch chicken, chicken fettuccine noodley side dish, and mixed veg.  It looked delicious.  There's also a homemade chocolate Heath bar pie in the fridge for desert.  I made myself a half of a slice of leftover soft meatloaf and ate a few of the carrots out of the mixed veg.  I have white chocolate sugar-free pudding in the fridge for later.  I could go on and on about wishing I had some chargrilled hamburgers or hotdogs, but there's no sense dwelling on it.

Two years ago at 7pm on July 4th, I would have been on someone's couch or porch, in quite the food coma after eating at least 2 cheeseburgers and possibly a hotdog (they looked so good I just HAD to taste one) and quite a few helpings of mac and cheese, sipping on some Captain and Diet Coke, watching the kids be moody and emo.  I'd be contemplating the 4th refill of my drink and deciding how I was going to have a piece of cake, a brownie, and a slice of pie without anyone realizing how much I was eating.  I would be planning and strategizing, asking one of the kids to just get two pieces of cake when they got their dessert and just bring me the extra one.

Two years ago at 7pm on July 4th, I would have been around 400 lbs and sweating like mad because I wasn't comfortable in summer clothes, so I would wear jeans and a t-shirt and an overshirt to hide my rolls of fat.  I was convinced that that 4x button-down, unbuttoned, made me magically appear slimmer.  There was no way I'd even wear shorts around the house, let alone outside with all these people.  I felt that the more clothes I had on, the less absolutely HUGE I must appear.  Nevermind the fact that I needed to carry around papertowels stuffed in my pockets to wipe the sweat off of my face constantly, nevermind the fact that I was pretty much beet-red all summer.

Two years ago at 7pm on July 4th, I would have been on the lookout for the sturdiest piece of furniture at the party.  I was always in fear that the flimsy plastic lawn furniture would break.  I was afraid of the cheap metal folding chairs collapsing under my weight.  I was leery about sitting on the ground because it would take 5 minutes and several embarrassing struggling noises to haul myself back to a standing position.  God forbid I had to sit on the pavement, then I knew there would be a very large ass-print of sweat when I finally got back up.

I've been through quite a lot in the past two years.  I can no longer celebrate Independence Day like I used to.  I'm still not healthy enough to BE independent.  My husband still takes care of me when I'm feeling sick, or when I'm having a bad day with food, or when the pain just refuses to stop.  I'm still quite self conscious about how I look and how I eat around people.  But looking back on it all makes me realize that I was much more miserable than I thought... than I ever would have admitted, even to myself.  I still struggle with holidays, they're just different struggles.

Holidays mean a little more to me now.  I have lived to see another holiday.  That, in itself, is something.  I'll be able to watch fireworks from my living room window tonight.  Some of the neighbors always set off some form of fireworks on holidays.  I'll be sitting on my couch, in shorts, eating my quarter cup of sugar-free pudding and smiling at the kids' constant teenage indifference.  At least that never changes.

Wonky much?

This morning I went for my pre-follow up routine bloodwork.  Not like I eat much anyway, but like most bloodwork, this requires fasting.  So, at 9:15 I show up for my 9:30 appointment at the blood lab.  The waiting room is packed with octogenarians who give me that evil old people stare that is generally reserved for criminals and tattooed people.  Oh, yay.  The hubby went with me, so ge stood next to my chair to give me something to lean on since I was feeling wonky and wobby today anyway.  I forgot to bring a book, so I had to amuse myself by listening to the plethora of complaints that emanates from a room full of oldsters.  The wait is too long.  It's warm in here.  I don't have an appointment, why do I have to wait? I tried to call for an appointment from the car on the way here, but no one answered the phone.

Really, you called a lab ON THE WAY HERE?  What the hell?  My parents ingrained in me that you make an appointment early and you show up early.  If I'm 15 minutes early anywhere, I'm running late.  When did being 80 make you entitled?

Anywho, they called me back and got my Rx for bloodwork and my insurance card and sat me in a big huge bloodwork chair.  My feet were swinging, I felt lost in the huge padded chair!  Then I realized that last year, I sat in this same chair for bloodwork.  This chair that made me feel like Edith Anne (yep, remember that?) was rather a tight fit last year.  The receptionist recognized me by my tattoos and squealed at me.  "Ohmygawd! How you lose dat much weight?? You look sooo guuud!!"  *sigh*  I thanked her for the compliment and proceded to explain that I have no stomach tissue and only 2/3 of my intestines left.  It works well for weight loss, but I wouldn't recommend it...  She stopped squealing at me at that point.

So, after getting 6 vials of blood drawn, I slowly got up from the chair.  I was feeling mighty wonky by this point.  The room was starting to tilt.  I said I was feeling a little lightheaded and tried to walk slowly.  The oh so helpful receptionist said "Oh, just go have a cookie or two and you'll feel better."  Yeah, thanks.  I'd like to have a cookie or two.  Bite me.

Maybe I'm just bitter and grouchy today.

The hubby helped me out to the car.  I did try to eat a little bit after we got home, but I'm still feeling wonky.  Dammit.

I'm going to the surgical follow up on July 10th with my Nutritionist and the Post WLS doctor, so I'll find out what kind of malnourished wonder I truly am then.  I have a feeling that most of my levels are still off.  Hoping that we can figure something out for the wonky dizziness... 

For now, it's time for more pain meds... and maybe a nap.  Perhaps a few hours of blissful slumber will make me less of a cranky, bitter, bitch today.  Let's hope so, for my family's sake...

Definitely a Lateral Move...

So, it's not really an improvement, but more of a trade-off.  It seems as though the nasty, bitter, horrible Bentyl has kicked my intestines into motion.  I have been able to keep about 80% of my food and fluid intake down, and I'm actually not all backed up like I had been for a while.  I'm tolerating more and more solid-ish foods and am making my minimum protein requirements (60-80g daily) on most days.  Of course, there's a catch.  There's always a catch...

My pain levels are going through the roof.  Especially after I eat or drink, I have this weird pulling/tugging sensation in the center of my abdomen.  The pain seems to be coming from my "stomach" or maybe from where my PEJ feeding tube used to be.  Some times it's just an annoyance, then there's the times where it feels like someone twanged my innards with a big rubberband and started trying to remove my intestines with pliers and a great deal of force.  On good days, I can actually feel the movement of the foods I eat.  On bad days, I curl up into a whiney, crying ball.  The pulling pain seems to get worse if I decide to try and move around, or if I bend to pick something up.  I've actually started taking my pain meds as often as prescribed, hoping that if I keep medicated it will keep the severe pain in check.  No such luck.  I'm terrified that I'm going to end up back in the hospital.  I'm trying to stay stoic, but it's getting more and more difficult.  I don't have another follow-up with my surgeon until July 11th, so I'm at least trying to hold out until then.

I do not want to go back to the hospital.  I would appreciate the stronger meds, but I really don't want to spend another holiday walking around the 7th floor of the hospital in a drafty, ugly hospital gown.  I really don't want another surgery, but it's starting to look like I won't have a choice.  I can usually put up a pretty good front about the whole pain thing, but this is getting worse and worse and I'm not sure I can keep up the "I'm fine" thing too much longer.

*sigh*

Some People Just Need a Good Ol' Throat Punch...

If I have to read one more post, email, or accusatory private message with the phrase "easy way" things are gonna get ugly.   I'm not generally a violent person, I am in fact an angry person.  I  do not mind simple questions.  I don't mind when people ask my opinion.  I do mind when people decide that I'm lazy and "took the easy way out by having surgery."

At the risk of offending any readers, the only answers I have for this accusation are both two word solutions:  Throat punch or "Fuck you."

I understand that some people are always healthy, have been raised healthy, and are perfectly fit.  I understand that some people decide to be Born-Again-Fit.  I also understand that some people are lazy and unfit and do, indeed, look for that quick fix.  We're all different, we all have different struggles, blah blah blah.

I decided I was tired of being fat.  I was in Weight Watchers for years, I followed medically supervised diets with an endocrinologist, I did all the fad diets starting at about age 10.  My mom decided that one summer I would eat nothing but canned tuna.  She decided that one year, before every meal, I'd have to eat this "candy chew" that tripled in size in your stomach so you couldn't eat as much.  She fed me grapefruit and Sweet N' Low, yogurt, and salads.  We made KoolAid with NutriSweet and chewed gum instead of eating.  We followed diet plans out of magazines and the backs of tabloids.  We fasted and walked.  Everything that my mom could grasp to for hope of having a thinner child, that's what we did.  Did any of it work?  No, of course not.  That's why we had to keep trying.

Most people who are overweight, or the new medical catchphrase "obese," have been through their own gamut of these challenges.  I finally decided I was tired of chasing my tail.  My insurance was offering to cover gastric surgery (well, 90% of it), so I finally looked into it.  As an added bonus, the docs found stomach polyps during the pre-surg testing, so I could lean on that as a reason and excuse.  There's a certain shame that the general population hands to gastric patients.  Like "You want surgery to be thin, how dare you!"  So I convinced myself that I was having the stomach polyps removed and as an added bonus, I'd have a gastric sleeve!  There are still some people in my life that don't know I chose to have gastric surgery.  Some people that I know would not be supportive.  I don't need that.  Especially now.

Society tells us that gastric surgery is the easy way out.  That the patients of bariatric surgeons are lazy and unwilling to work for their fitness goal.  Society shames us into a hiding of sorts.  Gastric surgery is usually not the result of a need to be "prettier" or a superficial want for attention.  It's the last resort to get rid of things like diabetes, sleep apnea, high blood pressure, and the overall trapped feeling of being obese.  I didn't want to be 100 lbs.  I wanted to be healthy.  I wanted to be able to keep up with the kids.  I wanted to make sure I could attend graduations and grow old with my husband.  I knew that being over 400 lbs would, in all literal matters, eventually kill me.

After bariatric surgery, the patient has to be more dedicated than pre-surg.  Especially after so many complications.  I have very little leeway now.  I have very few choices I can make.  I can't have just one more cookie.  Hell, most days I can't have ONE cookie... I can't take one more sip, I can't have one more drink at the bar.  If I make the wrong choice, I will be sick for hours, or I may be dead.  Since I have no stomach tissue (well, I have a 1 cm band at the end of my esophagus), I can not have alcohol.  I no longer produce the enzyme needed to break down alcohol, so I would have one drink and may just poison my liver enough to kill me.  I can no longer make bad choices.  I have no choice now.  I've been Clockwork Orange'd.  I must do what I'm supposed to, or I get horribly sick.

Even patients that have no complication still did not take the easy way.  Major surgery is rarely easy.

There are post-surg patients that are not ready for the level of commitment.  I see posts on the boards about people slipping into bulemia (oh, I ate something I shouldn't have so I just made myself throw up), about people not ready for the dedication (I'm 2 months out from my sleeve and all I eat is cookies), and people just not taking advantage of the tool they've gotten.  This irritates me to no end.  I want to smack people.  Dammit, you still have a choice.  I DON'T HAVE THAT ANYMORE!!  I get jealous.  I just want to shake people.  It's the patients that were truly not ready that give us all a bad rep.

I get messages often about taking the easy way out, sometimes I answer them.  Sometimes, I educate them.  Sometimes, I cuss at them.  Most times, I just send them a link to my blog and say "If you really think I have it easy, email me when you're done reading."  I rarely get a reply.  Makes me wonder if my blog made them at least stop and think...

I'm glad you're losing weight the natural way.  I'm glad you have that ability.  I'm glad you're 120 lbs and have flat abs.  I'm just trying not to starve to death.  I'm trying to have enough calories every day so that I can get off of the couch.  I'm trying to wait for the dizziness to stop so I can go make my family dinner (that I cannot eat).  I'm trying to stay hydrated, and get enough protein in so that my hair will stop falling out and my fingernails will stop breaking.  Somedays, I'm just trying to think positive so I can keep going...

If you still think this is easy, you really have no idea...  If I had the strength, I'd punch you in the throat.

Yay! Even more TMI...

So, after my first encounter with the evil Fleet bottle and a brief few days of feeling better, the feeling better stopped.  After another week of no BMs, I had to resort to the same measures.  This time, it didn't help as much.  I still had the "brick in my gut" feeling afterwards.  After talking to the doc I realized that I had another intestinal impaction.  He said that if the impaction was in the beginning of my intestines, that the Fleet might not travel that far to relieve it.  He suggested I try some Magnesium Citrate.  Soooo, off to the pharmacy...  If you've never had the pleasure of trying it, Magnesium citrate is a 10oz beverage that is usually available in either lemon or cherry flavors.  My pharmacy only had lemon, so that's what I got.  I put it in the fridge while I tried to figure out exactly how my 2 oz "stomach" was going to ingest 10 oz of this med.  The bottle recommends drinking the entire bottle for patients over 12.  Well, since my stomach is tiny, maybe I can just drink half of a bottle...

Tuesdays morning I got brave.  I took the bottle out of the fridge, steeled my resolve, and started sipping.  It wasn't as bad as I thought.  It just tastes like very salty lemonade.  Not delicious, but tolerable.  After about 2 oz, I started feeling very full and a little queasy.  I put the bottle down and headed for the bathroom, figuring if I was going to heave, I might as well not have to clean it up... then the gut started gurgling... then the pain started.  Imagine if you will, a cinderblock moving slowly through your intestines.  Yeah, that's what it felt like.

Without grossing you out too much, I was in and out of the bathroom every 30 minutes for the next seven hours.  Then it was once an hour.  Then it was a few times over night.  Then it woke me up this morning.

Needless to say, the problem is now fixed!  Whoohooo!  I feel like I ran a marathon yesterday, but my gut feels soooo much better.  I'm exhausted.  I'm spending today relaxing on the couch.

I'm watching a talk show about Pro-Ana lifestyles.  I kind of relate.  I don't understand how 70 lb girls think they're fat.  I was over 430 lbs at my heaviest, so I guess I'll never really relate, but I understand not liking food anymore.  Food has been mean to me.  Puking sucks.  But man, if I could eat one, I'd love to have a sandwich.  When this whole mess started I had dreams of being thinner.  I never wanted to be "skinny."  I just wanted to be thinner.  My goal weight is still over the doctor's recommended guidelines.  I think 150 would be nice.  The guidelines say I'm supposed to be closer to 130 to be at a healthy weight for my height.  I'm still fat, and I'm weirded out by the fact that I can feel my ribs and my collarbones.  Never in my adult life have I been able to actually feel my bone structure.  It's weird.  I can't imagine being 70 lbs.  I just want to feed these people sandwiches.  Sandwiches are delicious.  I can't eat a sandwich, dammit, but they can.  I often think that I'm stuck in the middle of a medically supervised eating disorder.  I hate eating and I puke a lot.  None of this is really of my own choosing.  I see a lot of posts on the surgery support boards that sound like people are choosing and ED mindset... quite a few people have posted that they eat food they're not supposed to and then just induce vomiting to "get rid of it."  This pisses me off to no end.  I have to fight to keep my food down.  I have to struggle to get my calories up every day.  I want to find a way to slap people through the computer...  If you're doing this, stop.  If you can't stop, get help.

I'm going to eat half a popsicle now... Someday I hope to be able to eat a whole one... and I'm definitely going to try and not puke...  Mmmmmm.... popsicle....

It's partly my brain's fault....

Yep.. I blame my brain.

I went to see the surgeon on Wednesday for my Gastroparesis follow-up.  I let him know that the Reglan was not as effective as he had hoped it would be.  It didn't taste too horrible, but I was still getting sick about 50% of the time.  Me and my big mouth...  So, he switched my meds from Reglan to Bentyl.  This is a GI anti-spasmotic, supposed to even out the motions of the whole GI tract.  And it tastes horrible.  It's the same color as Reglan, and just about the same texture, but it just tastes like bitter, and leaves a nice coating of nastiness that doesn't seem to wash off.  It make everything taste horrible for the next 30 minutes.  I've tried drinking a chaser, I've tried mixing it with juices, I've tried brushing my teeth.  Nope.  Everything is bitter and nasty after Bentyl.  On the upside, I have yet to vomit up the Bentyl, and it seems to be working as well as the Reglan was.  So, I'll take it.  It's not any worse than it was.  I'm good with that for now.

I explained that I was feeling "full" after just a bite or two of food.  My doc asked if I was "full" or just "done."  I thought that was a weird question until I thought about it.  Yep, I was feeling like I'm done.  Not really physically full.  He explained that since I've been sick for so long, my brain has now wired me to believe that after two bites, I'm pushing my luck.  The more bites I take, the more likely I am to get sick.  My brain says it would rather starve me than have me puke anymore.  So now I have to fight my brain and try to eat at least 1/4 cup of food at a time.  My brain doesn't want to eat anymore.  Stoopid brain.  I'm going to stab it with a Q-Tip if it doesn't start cooperating with me...

My abdominal pain is still rather unexplained.  He said perhaps after the 5 surgeries and all the poking and prodding and cutting I've been though, I might have some kind of over-scarring or an adhesion that isn't showing up on the scans.  If my pain continues, he's thinking of doing an abdominal exploratory surgery to try and find the source of my pain.  Since it is rather localized in the center of my abdomen, he's hopeful that it won't take too much exploring.  In the meantime, I was told to take more pain meds.  I got another lecture about being "too stoic" and that taking pain meds is not a weakness, blah, blah, blah.  He did, again, add that I'm the only patient he's ever had that has to be told to take MORE narcotics.  Usually, he has the patients that take too much narcotics.  I reminded him that I do not want to become one of the narcotic addicts.  That scares the beejeebies out of me.  I'd rather be in pain and getting the laundry done than be pain-free and drooling on the couch.  He gave me a refill for my pain meds and instructed my husband that he's allowed to spike my water now and then...  Cripes.

I've been adventurous lately and delving more into solid foods.  Mushy stuff is boring me to tears.  I figure if I keep it down, great.  If I don't, at least I got to enjoy it the first time.  I'm gonna puke now and then anyways, I might as well enjoy some food when my stoopid rebellious brain will let me...  Now if I could just eat some ice cream...  Man, I miss ice cream....

Rambling, Rantings, and a Little TMI...

My next surgeon's appointment is two days away.  I seriously don't know if I can do this anymore.  I know, I don't have much choice, but I feel like a whiny baby sissylala.  To use a much overused cliche, I'm sick and tired of being sick and tired.

I'm taking my Reglan like I'm supposed to.  My gastroparesis is still present and accounted for.  I do keep more food and fluids down that I have in the recent past, but I'm bringing up about 50% of my intake (as opposed to about 70% in the past).  I've gotten so tired of trying to replace what I've lost that I've instituted a "Three Strikes" rule with my puking... I'll choke it back down twice.  If it comes up a third time, then I'll spit it out.  Most things seem to stay down the second or third time I swallow them.  It saves me time and energy.  It sounds horrible, but if you figure I don't really have stomach acid to contend with, and things come back up relatively soon after I eat or drink, it's not as bad as it sounds.  I'm keeping track of my food and fluid intake, but I still can't get my calories up as far as I'd like to.  I'm having a really difficult time with textures, and right now, protein shakes are not my friend.  On a positive note, I can eat more solidish foods now as long as I remember to take my enzyme tablets.  I keep a bag of beef jerky around, that seems to be my best bet for a high protein snack on a good day.  I'm still living mainly on a soft diet, but every now and then I need to attempt something solid...  My "stomach" seems to top off at about 1/4 cup of food or fluid at a time, so I feel like I'm constantly needing to eat to keep myself fueled.  I'm not getting enough calories, so I'm exhausted most of the time.  I just keep pushing through.  What else can I do?

On the other end of things, I did break down and get some Miralax.  The first dose worked a little bit.  It wasn't too bad mixed in with some Crystal Light.  Miralax just has a faint "Elmer's glue" smell to it, but doesn't seem to taste like much.  I took a dose every day for a week. The first dose worked overnight.  A little.  Then nothing.  I've just been overly gassy.  Miralax just makes me fart.  Oh, great.  After a week of Miralax, my abdomen was soooo uncomfortable.  I completely felt like I was full.   Like my eyes were going to turn brown.  THAT kind of full.  My hubby threatened that if i didn't have a BM soon he was gonna make me go to the emergency room since I was in pain.  That was the point where I gave up my last shred of dignity and went to the store for that evil green Fleet box.  I figured that's what the hospital would do to me anyways...  So, without too much TMI, that finally got things going.  Man, do I feel soooo much better now.  I am going to talk to the doc about it and see what I can do to prevent that from happening again.  I know that my pain meds are supposed to constipate, and the high protein diet can do the same.  So yeah, let's not get stuck in that situation again.

So, I'm full of sad, full of bitchiness, and full of tired, but at least I'm officially no longer full of shit.... *rimshot*  ...thank you, I'm here all night.  Enjoy the veal.

I'm still fighting with Social Security.  They don't think I'm disabled enough.  Apparently puking all the time doesn't count.  I'm still on disability from work.  I miss working.  I miss being a productive member of society.  Being stuck at home makes me sad some days.  I just feel useless.  I want this to be over.  *sigh*

Anyways, I'll post an update with what the surgeon says later this week.  Hopefully, I'll have some kind of good news.  It's about time for some good news...  Something.  Anything.

Less is good, right?

So, I figured it was about time for an update.  I don't have much new going on.  I've been taking my Reglan religiously trying to get my guts moving properly and it seems to be working.  I have an occasional "Draino noise" like I used to, and I'm vomiting a lot less.  It hasn't stopped, but now it's gotten to a 70/30 ratio when I eat, instead of a 50/50 chance that I'll puke, and the liquids are staying down much more than the food is.  Any improvement is a good one.  I'm so tired of planning my food around the whole "what tastes ok the second or third time around."

I've been drinking water like crazy the past few days, but I can't seem to get hydrated.  I still get dizzy often and my outgoing fluids are getting a little darker than they should be.  I guess if that doesn't clear up soon, I'll have to call the doc.

My "Stupidity Moment" of this past weekend was quite a learning experience.  I got a terrible craving for a taro bubble-tea.  I haven't had one in probably 5 years or so.  It was just one of those random weird cravings.  We went down to DC to visit some friends and one of the girls actually went to a real Vietnamese place and got me a taro bubble-tea.  I knew it was risky.  I knew it, but it didn't stop me.  I sipped it slowly.  I stopped after 5 minutes.  I made sure not to eat very many of the bubbles since they're just "stomach filler" and I drank very little of the tea since they are NOT sugar free.  I used the straw.  Yep.  Duh.  I should have known better.  Three hours of horrendous gas pains has proved to me that I cannot use a straw.  Ever.  A little bit of sugar was ok.  A few tapioca bubbles were ok.  Drinking through a straw HURT.  Lesson learned.

I'm also having less bathroom time, which is NOT good.  Along with being dehydrated, it seems like I may have to resort to some Miralax or something.  Nothing's moving in that department, either....  I don't know if I should up my fiber supplements or if that will just cause an impaction... Eeew.  I know.

Sooo, that's about it.  Nothing real remarkable.  Less puking is nice.  Less output everywhere else is not.  *sigh*

Big Words Aren't Always Fun...

Big word of the day: Gastroparesis. I has it. Basically, my stomach and small intestines are paralyzed, no longer moving food and fluids. My peristalsis is broken. I start new meds tomorrow to try and force peristalsis. Follow-up with the surgeon in 4 weeks. No new surgery for now...

 So. my surgeon  gave me an Rx for Reglan liquid to try to get my stomach and intestines moving again.  He said the twist in my intestines isn't fully closed and is allowing liquids through, so we'll try and deal with that after we get my guts moving the way they're supposed to. 

 I was told to take more pain meds.  I tried to explain that I have a choice between not hurting OR actually functioning around the house.  I prefer to function and hurt.  My doctor disagrees.  He wants me to try and keep the pain at a "low level" because I seem to think that being in pain is manageable.  He wants me to be pain-free.  The surgeon pointed out that I still have half of my pain meds left... that was an Rx from March for a 10 day supply.  He's very insistent that I take my pain meds the way I'm supposed to.

I suppose I'll go take some narcotics and try to take a nap...

It's What's Inside That Counts... Right?

Yesterday I had the pleasure of having an "Upper GI with Small Bowel Follow Through" test at the radiology department of the hospital.  The fun began with the receptionist.... when I was called up to check-in, I presented my insurance card, my drivers license, and my Rx from the surgeon requesting the test.  The receptionist look at my ID, looked at me, back and forth for a good minute...  then she asked for another form of ID "Cause dis don't look like chew at all!"  *sigh*  It does look like me... I'm only about 60 lbs heavier in my license picture.  So, I went through the whole, check the piercings, they're all the same, I'm just a bit thinner...  She then flips out "Awww, chew look so guud!! Whatchew had done? You had onna dem surgeries?"  *sigh*  I have no stomach tissue, my stomach is made out of intestines, which isn't really working, I've been unable to eat solid food for almost a year and that's why I'm here for a test...  I don't think that was the answer she wanted to hear...

So, I get checked in, taken back to the testing room and change into the lovely hospital gown.  Do they make hospital gowns fugly on purpose so you won't be tempted to steal them? Really, who would steal a hospital gown??  So I'm now in a blue and white striped gown with red/blue/black starbursts and moons on it.  I felt like i was wrapped in 50s wallpaper... Yeah, I'm comfy now!

Thankfully, it was a barium test.  Barium is not delicious.  In fact, barium tastes pretty much like chalk water.  But barium is waaaay nicer than gastrograffin.  Gastrograffin is more like clear dishsoap.  I'll take chalk water any day... As an added bonus, the nurse in my procedure room had been there during some of my many gastrograffin tests while in the hospital, so she already knew that I had a limited stomach capacity and she remembered how much trouble I usually have during these tests...

Basically, this test has them watch as you drink the radioactive fluid.  A fluoroscope gives them x-ray like pictures of you digesting the testing fluid.  They watch as you drink, then they take new pictures every 20 minutes or so as the fluid moves through your system.  When the fluid stops moving at a certain point, they know that you have a stenosis, or a stricture. 

You can get an idea of the scale of the picture by using my spine as a reference point.  Yep.  That's barium just kind of hanging out...

After 3 hours, the barium was moving slightly, but not as much as they expected to see.  They had good fluoroscope pictures of the bad spot, and I was in a lot of pain, so they sent me home.

Soooo, now I feel horrible.  I've felt sloshy and full since the test was done.  I have a follow up with the surgeon next week on the 9th to find out what can be done about the stenosis in my intestines... I'm just trying to hang in there until then...

Newest Side-By-Side Pic.. A Litte Pick Me Up...

Nothing like a side-by-side to really make you see your progress...

I was submitting the first pic for a contest at the tattoo shop I frequest and said GEEZ, that doesn't even look like me anymore!!  Hubby agreed and said maybe I should do a side-by-side and compare... So, they're not the greatest pics of me ever, and please excuse the hair in the first pic and my pajamas in the second, but HOLYCRAPMONKIES...

And now I just had to post it pretty much everywhere.  I'll have to keep this pic on my computer for those depressed days when I feel like all of this pain just isn't worth it...

Friday Update...It Could Always Be Worse..

So... Next Thursday is my Radiology test... I'm scheduled for an upper GI with small bowel follow through.  Another "drink this gross stuff and we'll watch you digest it" kind of thing.  Oh, yay!  Can't wait for that...

On a positive note, Yesterday I was brave and ventured into new clothing territories... I found out that size 14 jeans are comfy.  Not even tight... might be into a 12 sooner than I though.  Of course I only bought one pair of 14 jeans, but hey, they fit.  I got brave enough to finally buy new drawers (panties or underthings, for those of you more delicately inclined).  No more size 8s, hello size 6! I also got a few sportsbra options since I'm supposed to be moving and shaking a bit more on days when I'm not so pukey.  I'm not sure I can get used to this one... It feels like someone's hugging me constantly.  It does make me stand up a bit straighter, but I'm getting claustrophobic or something.  I'm so used to wearing clothes from 140 lbs ago, that stuff that actually fits right makes me uncomfortable.

I found some sleevers on MyFitnessPal, so now I get to read other people's food diaries that are a bit closer to my own, though I still get jealous of people recording that they ate a cheeseburger or a whole sandwich.  I'm still in mourning over bread.  I miss bread.  Not so much the sweets, like I thought I would.  I miss bread... sandwiches and toast and rolls and a big slab of homemade bread, warm with butter... Yeah.  I miss bread most of all.  Ooooh, and ice cream.  Ice cream was a go-to therapy kind of thing.  Now one or two babyspoons of ice cream makes me sick for hours.  Dumping sucks.

I've stayed off of the sleever boards for a few days since I've been angry and depressed.  I understand that this "journey" is different for everyone, but the boohoo-poorme posts enrage me sometimes.  "Poor me, I ate a whole pizza today!" "Poor me, I only lost 12 lbs last month!"  Makes me want to smoosh their nose into my blog like a dog that pooped on the carpet.  "Poor me, I lost all of my stomach, most of my small intestines, and I've been on liquids and mushy food for almost a year!!"  Dammit.  I know, not very sensitive of me,  that's why I don't respond to those posts.  Not everyone deals well with my snarky kind of insight.  I have come to accept that.  And I do have my own Poor-Me days, so I guess I don't have much room to talk.

I'm not dead.  I'm not back on a feeding tube, or a PICC line for my nutrition.  I'm not flayed open in the hospital waiting for a staph infection to be cured.  I'm not 400 lbs.  It could always be worse.  I have to keep remembering that.  That helped me get out (or at least partially out) of that big depression I've been going back and forth with these past few months.  It could always be worse.

So, there's my insightful advice for you.  This sucks.  Pureed food sucks.  Puking sucks.  Feeling lethargic and malnourished sucks.  Loose skin sucks.  Scars suck.  Abdominal pain sucks.  Not being able to eat what you want, or drink what you want, WHEN you want it sucks.  But, it could always be worse...

*knock on wood that I didn't just jinx something*

Anyone have a ladder I can borrow?

...or a rope, or some stairs... Anything to get out of this seemingly bottomless pit I've been in lately...

According to a bajillion websites, depression is rather common after WLS.  I've been reading up on it after realizing that I can't seem to get myself motivated.  I've talked to my primary doctor, but since I've had so many revisions, my medication choices are severely limited.  I can't take anything with an "extended release" formula, I can't take any medication in a solid form (no pills, no capsules).  I haven't had much luck breaking open capsules and mixing the contents with water or soft foods, they usually just come right back up.  You would think there would be a larger market for liquid antidepressants...

I've been depressed for a while now.  I guess after having so much hospital time and so many complications, depression is to be expected.  I've been trying to deal with it, but my patience is wearing thin.  I'm starting to get irritated and cranky at my family.  My kids are starting to avoid me when I'm upset, and my poor hubby tries to help as much as he can... I feel worse for making them put up with me. 

Teenagers get a bad rep, sometimes.  They make me crazy, but all in all (especially compared with some of the kids that I've seen come through this house) my kids are awesome.  They do chores after some prodding, and ask if they can get me anything... They stay out of trouble. They're good kids.

My hubby as been wonderfully supportive though all of this medical nonsense.  He's truly the best guy ever.  He's taken off a lot of days from work to take me to doctors appointments and tests and procedures.  He makes me tea and brings me a blanket when I'm not feeling well and stuck on the couch...  He lets me hug him and cry on his shoulder when I'm in the middle of a depressive fit...

So, if I have a great supportive family at home, why am I still so damn sad?  That's the most frustrating thing by far.  I know I'm depressed, now what do I do?  I'm hoping this is just a phase and it'll pass soon.  I've been burying myself in depression websites trying to find an answer.  I've been reading a lot of forum posts and responses, looking up statistics, and trying to sift through all the technical jargon on medical websites...  I wish I would have done this before I had surgery back in May...

My best answer so far has been that fat cells also store hormones.  As the fat cells are diminished, weight is lost, but more hormones are released into your bloodstream.  Great, so as long as I'm still loosing weight I'm going to be on constant PMS mode??!!?!?

WLS patients are up to five times more likely to commit suicide than the general population.  That is startling.  If the percentage is so much higher in WLS patients, why is this never really addressed before surgery?  I mean, I am nowhere near THAT depressed.  If I was, I'd hope to have the sense to check myself in somewhere...

I'm also in a serious Food Mourning stage.  I used to bury my depression with a pint of Ben & Jerry's.  Now I have to face my feelings head on.  I miss being able to use food as a comfort and a crutch.  Now food and I have a tense, iffy relationship at best.  I've been Clockwork Orange-d.  Food is my violence.  Now just the thought of food makes me rather queasy.  Viddy well, brother. Viddy well...

Blah...

The past few days have been more of the same.  Don't wanna eat.  Have to eat.  Occasional yarking.  Trying to get more water in.  Nothing really new.

This morning I woke up and just couldn't get myself out of bed.  I knew I had to get up... I even had to pee... I just didn't feel like moving.  So I just stayed there, looking up at the ceiling, talking to myself in my brain.  Trying to find motivation.  After a while, the hubby walked in to see if I was awake...   He kissed my forehead and put his hand on my waist and promptly said "Pelvis!"... I cried.

It wasn't his fault.  I'm sure he doesn't believe that it wasn't his fault.  I've been having issues with what I see in the mirror for a long time.  But all at once, my new boniness hit me.  I can feel my ribcage and my pelvis when I lie down.  I can feel my pointy pelvic bones when I sit on a hard chair.  I can feel the cords in my legs behind my knees and at the top of my thighs.  I can see my clavicles and feel the divots in my shoulders.  I can see the cords in my knuckles instead of the fat little dimples that used to be there.

When I was 400+ pounds, I didn't much like what I saw in the mirror.  At times, I still see the same fatgirl in the mirror that I saw back then.  But now nothing feels the same.  I still feel fat, but now I'm fat and bony at the same time.  That doesn't make much sense to me, but I don't like it.

I was never really good at accepting compliments.  My family taught me that there's some kind of snark behind every nice word.  I haven't quite unlearned that.  Now when someone says how good I look now, or something about how I've lost so much weight, I just want to scream.  Don't you see how horrible this is?  I'm lumpy and bony and weird now!  I hate it!  WTF?

I guess I'm just having a pityparty kind of day.  I read through the archives on WeightySecrets.com and commiserated with many of them.  I know how they feel.  I never expected the whole WLS thing to be "easy"... I just didn't know how much harder this would be than just being fat.

When I was fat, I had no comorbidities.  My blood pressure was a little high now and then, but nothing too bad.  I had no sleep apnea, no diabetes, no cholesterol problems... none of the usual suspects.  I was just fat, so I got tired easily and I would sweat more than your average thinner person.  I gave all that up for this.  This lifetime of being borderline anorexic.  A lifetime of constantly watching and planning my food and water intake.  A lifetime of vitamin and mineral supplements, protein supplements, constant nausea, dehydration, and clothes never fitting for more than a week.

I can't undo it.  I can only carry on.  I'm trying to stay positive and do that "tomorrow will be better" thing, but damn, when is my tomorrow?

Oh, the many ironies of my daily life...

So, today has been a sucky day for food so far.  I just don't want to eat.  Anything.  Don't wanna.  I'm not feeling too nauseaus, I'm not yarking every few minutes, and I'm not in too much pain today... I just have no desire to ingest anything.  I keep finding things to do around the house so I don't have to sit down and eat anything.  I've done 3 loads of laundry, picked up the boys' stuff from the living room, and even cleaned up the "mancave" around my husband's desk... I realized that I'm doing this so I figured I should probably put it into text, acknowledge, and overcome.  So there it is.  I have to eat.  I have to make a protein shake or something.  I did manage to eat two slices of cheese this morning (10g protein, yay!)... and I'm trying to keep sipping on some Crystal Light since it's about 85 degrees in the house.  This is just really hard today.  I'm not hurting too bad, so why can't I just suck it up and eat something already??  Gah!!

Anywho, one of the more ironic parts of the whole food situation is I am a baker.  I've been on disability since May 2011 and I'm not allowed to go back to work until we get this whole nutrition/vomiting thing under control.  So to supplement my sad little disability check, I've been exchanging baked good for donations towards my medical bills.  I used to send out noms now and then to friends just as a simple gift.  Some of my friends thought that I should get paid for my work and started dropping money into my PayPal account, especially since they know all about my medical stuffs and work situation.  They shared baked goods I had sent and they told people... who then told more people... who then told more people...  And now I am sending out, on average, 4 packages a day of baked goods.  I'm rather famous (infamous) in our ever expanding social circle.  I've been dubbed The Queen of Noms.  The Cupcake Lady.

I can't eat a cupcake.  They make me violently ill for hours on end.  I have days, like today, where I absolutely abhor food.  Today, I mailed out 8 dozen tiny pies, 3 dozen cupcakes, and assorted truffles, muffins and chocolates to 6 different states.  I am constantly surrounded by food that used to talk to me.  Cupcakes all knew my name and yelled very loudly from the kitchen.  Chocolate pies were a weakness.  Chocolate was my fatgirl crack.  Now I have to have someone else home when  I bake because I can't even taste the frostings I make to check them, they might make me sick.  My tolerance seems to be right around 7g of sugar at a time.  The difference between yummy and ohmygodimgonnadie is somewhere between 5 and 6 jellybeans.

Like I've said before, I use the MyFitnessPal program on my phone to track my intake and make sure I'm getting enough protein and water in every day.  I occasionally read through some of the forums there, or poke through my friends' food logs just to live vicariously though other people's food.  Sometimes it makes me jealous.  Sometimes it just makes me sad.  I miss food.  Even when I hate food, I still miss it.  Food was like my long term abusive boyfriend.  It hurt me physically and emotionally,  It complicated my life, It even made me hate myself sometimes.  But I loved it.  And even now, knowing the havoc that food brought into my life, I still mourn my loss.

Now that food is no longer my addiction, I have become the dealer.  I am the supplier.  I am the pusher.  I am causing dietary havoc in the lives of people I like.  Watching the mailman cart off the 6 outgoing packages of noms today left me with a twinge of guilt.  I feel bad for selling cupcakes.  How silly is that? 

A protein shake will not assuage my guilt, but it will give me the fuel I need to keep rolling along as the Baking Machine.  I will keep supplying the demand... My guilt is still overwhelming somedays, but I have to admit, when one guy raved on and on about the triple chocolate donuts I sent to him, and how they were fantastic and sooo much better than any other donut he's ever had, I still didn't tell him that they were baked and not fried... and made with pumpkin puree instead of eggs and oil...  I just smiled and said thank you.  ...occasionally I send out low fat, low sugar noms without telling people.

I'm not a horrible person all of the time...

A Timely Update....

Well, we're a little closer to an answer now.  I had another upper EGD this morning at the hospital GI lab.  The horribly expensive Prevacid SoluTabs have helped and my frankenstomach ulcers are healing.  The ulcerations in my intestine are also looking better.  Unfortunately, while scoping my small intestine, the surgeon discovered that my jejunum has twisted causing a slight obstruction.  He was able to get the scope through the obstruction with "some wiggling and a bit of force," so he believes that fluids are passing through fine, but this may be the reason I've been having so much trouble with solids.  My last food intake was around 8pm, my last drink of water was at 11pm.  When the EGD was done around noon today there was still remnants of solids trapped in the intestinal twist.  Food is getting trapped at the sight and being forced back upwards, thus causing the ulcerations and the massive amount of pain I've been having. 

Now I have to go for a barium test to identify how bad the twist has obstructed my intestinal movement.  I'm going for an "Upper GI with Small Bowel Follow Through" on May 3rd.  That was the earliest appointment I could get.  I have to watch for signs of the twist getting tighter and may be in for an emergency room visit between now and then...

For those of you just joining us, I have a modified gastric bypass.  I originally went in to get a gastric sleeve and stomach polyp removal done May 23rd, 2011.  By the middle of June, my sleeve had fully strictured and healed itself shut.  I was given a much unwanted bypass in July.  This was followed by another modification surgery every 2 months due to strictures and over healing.  Surgery #5 was in January. I have lost most of my actual stomach tissue (except for a 1cm x 3cm band at the end of my esophagus), I have lost all of my duodenum (the first part of the small intestine), and my frankenstomach is now made of my jejunum (the second part of the small intestine).   Hello, I am the 0.001% Poster Child.  I am a walking Complication Machine. 

And the machine rolls on....

Not much to update... I still suck at blogging...

So, the surgeon didn't know why I'm still in so much pain.  He thinks it could be due to frankenstomach/intestinal ulcerations.  Now I'm on Prevacid Sol-Tabs that cost me $150 for a 30 day supply... that's WITH insurance.  The generic was pulled from the shelves, so I'm forced to buy the brand name.  This is the final option in a long line of acid blockers I have tried.  I do seem to tolerate them much better than the other ones, so at least they stay down most of the time.

I have another EGD scheduled for 4/13 to check and see if this has healed anything, or more likely, if it has began healing things.  I still may need a surgery to remove the permanent stitching.  The surgeon believes that the stitching may be causing some of the ulcer problems I've been having.

I'm still mainly on a soft diet... mostly protein shakes and chili (very mild, I can't see to eat anything spicy), cheese, and sugarfree pudding.  I get adventurous now and then and try to eat something a bit more solid, but my frankenstomach usually just sends it back up.

On the positive side, I'm down over 140 lbs and looking into buying some size 14 jeans... I still have trouble seeing it.  I get a little freaked out by the mirror sometimes.  Just waiting for my brain to catch up, I guess.  I read in a blog long ago that surgery is the easy part, the hard part is working with your non-modified brain.  Brain modification is difficult.

So, almost 11 months after my first surgery, I'm still never hungry.  I have to remind myself to eat by watching the clock.  Every 3 hours or so, I have to eat something or I tend to get light-headed.  Getting fluids in isn't too bad most days, but eating is still really difficult for me.  My relationship with food has changed sooo much.  It used to be a friend... a comfort.  Now I must eat to live.  Food is fuel.  It's a necessary evil in my daily routine.  Sometimes, food isn't too bad.  Some days, I hate food.  Seriously hate it.  Now when I'm angry or sad or depressed I have to face and deal with it.  It was so much easier to just bury myself in a pint of ice cream or a bag of cookies.  I no longer have that option.  It has taught me a lot about my emotions and my reactions to them.  Taking food out of the equation has completely changed my coping mechanisms.  It makes dealing with teenagers that much harder.  But I have to.  So I'm trying to learn as I go.  What else can I do...?

So, I'm just trucking along... waiting to stop vomiting.  Once I stop vomiting so much, I can go back to work.  I miss work.  I don't necessarily miss my job, per se, but I miss being a productive member of society.  Some days I feel useless.  I have deemed myself CouchLump on those days.  I think a lot of the anger and depression will go away as soon as I can get back to some semblance of "normal" in my day to day.  Until then, I deal...

Appointments and Disappointments...

Sooo, I have an appointment with the surgeon this afternoon.  Hopefully I can get answers as to why I have this continuing stabby pain the the center of my abdomen... It's right under my ribcage, which is weird since I now know exactly where my ribcage is.  I can feel it.  Like my clavicles, it's been a looong time coming, but I can actually see them now.  I have bone structure.... Whodathunkit?

I've been eating a little better, but still nowhere near where I'm "supposed to be" at this point.  Still a lot of soft stuff and the occasional Quest bar.  Mostly protein shakes... blech.  Getting tired of those...

Squirreling away my pain meds, I've managed to make a week supply last for two months.  The downside of that is I only take meds if I absolutely HAVEto, so I'm almost always in pain... Yeah, it's a habit of mine.  I hoard meds like some kinda junkie.  I hate taking meds, but I also do not enjoy the stabby pain... I need t fix my mindset on that...

Well, I'm off to get ready for my appointment.  I'll update my sad little blog when I get back this evening  =)

I suck at blogging...

Since I have been stuck as the newly designated CouchLump lately, I haven't felt well enough to sit at the desk and update my sad little blog.  The hubby decided maybe it was time to get a laptop so I can stop making excuses and being an antisocial hermit.  So here is my first update... written on my spiffy new (used) purple lappy.  i have named it LappyFromHell since the drivers were all wiped off of the memory and it took days to download them to an external drive and reinstall them to get the lappy to work.  Then I had to get rid of 769 viruses.  No, that's not a typo. Seven hundred and sixty nine viruses on this dang thing... Needless to say, I wrote a nice letter to the ebay seller...

Anywho, not much has changed for me.  I'm still in a world of abdominal hurt.  My sides seem to feel better if i have more restrictive pants on.  Gravity hates me.  So I'm stuck wearing pants that aren't too big, which now most of my wardrobe is a few sizes too large...  I still have a central abdominal pain, but I'm going to see the surgeon on the 14th, so i guess i can hold off til then.

I am finally paying attention to my protein numbers and making sure i get at least 60g in daily, trying for 80g but most days that's not really possible...  I still don't quite understand why i cant function as well as other people, and it still gets to me some days.  Hopefully we'll get some answers next week...

Just one of those days...or I'm just a crybaby...

Nothing remarkable.  Doing ok with being able to eat and drink, not too much of the slimeys or pukies... I just don't want to eat.  I have absolutely no desire to eat... or move... or anything today.

I don't have a follow-up with my surgeon until March, but I'm debating whether to call him or not.  My sides hurt and my abdomen is really tender.  It's not an all-out stabby pain, but if I'm not wearing tightish pants, my sides ache... When I poke at my abdomen it HURTS.  It's okay if I don't poke, though.  I dunno if I should call and complain, or just let it go until my appointment.  I keep thinking that I'm overreacting, but every time I call I end up in the hospital...  I'm thinking maybe it's just gravity pulling on all my excess skin.  I can't imagine people walk around and function in this level of pain, though.

I'm thinking I might just have to talk to my GP about getting back on some kind of depression meds.  Feeling this moody and grumpy is going to start impacting my family soon.  I'm irrationally crabby.  I dislike my body more now than I did 130 lbs ago.  I still can't see the weight loss like other people can.  Now I just have more loose skin and less boobs... I dunno...

I'm attempting to finish this protein shake, but it's not going down easy today.  Chike Very Vanilla, 8oz of 2% milk, and a splash to sugar-free Torani chocolate syrup.  Meh.  I'm just not feeling it today, but I've been slacking on my protein this past week.  I haven't had a gain, but I'm exactly the same weight I was a week ago...  Gotta drink my protein.  That's my new mantra.  Gotta drink my protein.  Gotta drink my protein.

Waaaaaaaaahhhhhh.....