The Adventure Never Ends...

I wish it would....

So.... Thursday, I went for my PICC xray and found out that it had shifted from it's original position, so I was going to need a new PICC put in.  The nurses that install the lines were busy, so I had an appointment scheduled for Friday morning.  After that lovely news, I went for my EGD, which I was told was scheduled at 10:45am.  After I had checked in, gone into the pre-op area, got dressed in the lovely paper gown, I was told that my appointment had been changed to noon.  Aaaaand, no one told me.  Yay, lots of extra time in pre-op...

During my EGD, my surgeon found an errant stitch that should have been removed two years ago.  He took that out and said he also untwisted a slight turn in my intestines.  I woke up from anesthesia feeling like someone beat me up.  I've gone through a ton of EGDs before and I'd never woken up feeling so awful.  They pumped me full of Fentanyl and sent me home.  I actually slept most of the rest of the day.

I had my PICC appointment this morning at 9am.  The nurses were overbooked, as usual, and seemed hurried.  They got me prepped and yoinked out the old line.  Not too much of a problem locating a good vein a little further up in the same arm.  The problem arose when the nurse started the deep vein punch and it HURT.  I yelped and tried not to move, and the nurse casually said "Oh, I guess I should give you some Lidocane."  What?  You did that with no local anesthetic?!?!  Oh, shoot me now.

Par for the course, huh?

Now I'm crabby, my arm is sore, and I have to get used to the new placement f the PICC.

I know, whine and bitch, bitch and whine.  That's about all I'm good for lately.

I haven't tried to eat anything solid yet.  I just don't want to.  I did drink a protein shake today, but that's all I could manage.  The pain twang is still there, though it does seem to be lessened.  At least that's something.

Haven't They Figured Out That I'm Bad at Tests??

Tomorrow, I'm scheduled for another EGD.  Before I go in for that joy, I have to stop by radiology and get my PICC line xrayed.  My visiting nurse is concerned that my PICC line has pushed itself out 7 cm over the past 6 months or so and now it may not be seated properly above the heart valve.  If my PICC xray shows the line has indeed moved up far above my valve, I'm going to have to get the current PICC pulled and have a new one installed.  I'm not sure exactly which I'm looking forward to less...  At least with the EGD I get a nap...

So, joy of joys, since I cannot drive myself to these appointments (1. since I'll be under sedation, and 2. since I'm on heavy duty narcotics and don't trust my own driving skills) I'll have the added stress of hanging out with my parents the whole day.  Don't get me wrong.  I like my parents.  Though my father's driving lately tends to scare the bejeebies out of me.  So, yay.

I'm still convinced that I have some form of adhesion to my abdominal wall.  A small piece of fused scar tissue perhaps.  It would explain (in my mind, at least) the tugging, pulling, and rubber-band like twanging feeling that I keep getting.  It would also explain why hiccups, sneezes and any sudden movement of my abdomen leave me looking like I have Torrettes Syndrome.  I hiccup, I curse.  I sneeze, I curse.  I turn too fast, or bend down to quickly, I curse.  ...maybe I just have Tourettes...  I should add that test to the list.

Monday, next week, I'm traveling up to the Hospital at the University of Pennsylvania.  I've been working with the Gastroenterology department (Dr. Wernsing and Dr. Yang) there attempting to get some much needed answers.  On Monday I'm scheduled for a menometry and a little tracking camera-pill (that I can't remember the name for right now).  Basically this will test my rate of peristalsis and check for any physical anomalies along the way (such as ulcerations or obstructions and strictures).

I'm still having the same pain in the same spot, so at least something is consistent.  Still feels like a rubberband twaging me... or on a bad day I swear it feels like a baby kicking.  It's creepy and weird and on really bad days you can watch my abdomen move while it spasms.

Hopefully someone will figure something out soon.  I'm ready to take my ball and go home.  This isn't fun anymore.

In addition to all of my medical stresses, my oldest son just graduated High School.  YAY!  We survived prom planning and graduation stuffs.  Man, that crap is expensive!  My youngest also had to order his school ring.  I feel like I should be shooting twenty dollar bills out of my fingertips with all the money I've been handing out lately.  But I must say, I am proud of my boys.  My oldest and his woman looked fantastic going to the prom.  The boy made me super proud graduating, and he's already been accepted into the college of his choice for the fall.  Now the college planning begins.  He'll be going to school in Connecticut, so we have to figure out travel expenses along with everything else.  I swear, if this stomach thing doesn't kill me, freaking out about college will.  It's very traumatic realizing that my first born baby boy is a man.  A man with a beard.  A man with a clear career path and plans for his life for the next 10 years.  I must have made a good decision or two somewhere.  The kids turned out pretty good.  Or I got lucky.  Something like that....

Anywho, I'm off to bed.  Early start tomorrow.  Already have my TPN hooked up so I can take it off before my parents get here.  Oh, yay.  Wish me luck...

Sweating as a "thinner" person...

So, I was always under the assumption that I would sweat a lot because of my size.  Putting it plainly, fat people sweat.  I had become accustomed to carrying papertowels folded in my jeans pockets when the weather got slightly warm because I knew just walking from the car to the front door of my job would make me all kinds of sweaty.  Mopping the sweat off of my face/neck before I got into work/the store/whatever destination would make me look less...fat and sweaty, for lack of a better term.  I would dread sitting anywhere outside in the heat because I knew when I got up there would be a HUGE sweaty butt print left behind (especially if I sat on concrete like the benches outside of work).  There is no dainty way to play off that huge sweat-print.  There's no way to pretend it isn't there.  There's no way that everyone doesn't see it.  It's there.  On the concrete bench, on the plastic lawn chair, on the steps, where ever I sat, I could not escape the big sweaty butt print.  Worst of all, sweat spreads out, so inevitably the butt print would make my already formidable arse look even bigger.

I was under the assumption that thinner people sweat less, therefore I would sweat less when I became said thinner person.  As I sit here, sweat-stuck to my leather desk chair, I will tell you that thinner people sweat.  Dammit.  Today the thermometer outside hit 97 degrees.  I cannot seem to drink enough water.  I sip and sip and sip until my FrankenStomach is sloshy and I'm still thirsty.  I'm sweating it all out.  I'm racing to stay hydrated, attempting to find that fine line between sloshy and pukey.

Perhaps it's all the excess skin... Will I be less of a sweaty mess when I get that removed?  Or am I just a sweating kinda person?  Will I always be doomed to damp hair in the summer?  I guess I'll just have to wait and find out.  I'm drinking water like it's going out of style.  Sip, sip, sip, puke... rinse, repeat.  The last thing I want is to end up in the hospital due to dehydration.  I know a lot of post op's end up hospitalized a few times due to lack of waters.  I've already been there once or twice myself.  So I'm moving onto more breathable furniture so I can continue to sip, sip, sip my water.

I want a Mountain Dew.  It's almost 100 degrees out and I want a fizzy, ice cold soda... on ice... with a straw.  Bitch and moan, I know.  I'm going to refill my water bottle now.  ...well, after I peel my smaller arse off of this leather chair.

I was smart enough to put a towel down on the seat so no one can see my butt print when I get up... Ahh, the small victories.  Gotta take them when you can  =)

Wow, Has It Really Been That Long....?

Yep.  I have already said I suck at this blogging thing.  I'm sorry.

If any of you are still out there, I apologize for my absence.  I'm going to read a few pages back and see where I left you all hanging, then get some updates up.

It's been a rollercoaster... par for the course...  I've had my ups and my downs, and now I'm still pretty much in the same place I have been.

Currently I've been on the same PICC line since October of last year, but my TPN has been cut down to every other day.  My visiting nurse has suggested bringing it down further to every three days when I feel like I can eat enough to sustain myself in between TPN bags.  My diet currently consists of mostly liquids... Liquids are safer... I've been sipping on Glucerna shakes during the day since none of the protein shakes seem to be thin enough to appease the FrankenTummy.  I have bits and bites of solids, but usually it's just to satisfy the need for a taste of something.  I'm still vomiting like an overactive volcano with solids or thick liquids.

I haven't logged in to MyFitnessPal for quite a long time.  I just found it too depressing.  Instead of being inspired, I would watch the success of others and cry.  Sooner or later I'm going to have to face those demons.  I do miss quite a few of my MFP friends.  Some of them have sought me out on Facebook and we talk there.  Please feel free to contact me there, if you'd like.  But, yeah, I need to get back on MFP... I keep saying I'll log back in as soon as I'm off of the PICC line... that just hasn't happened yet.  I've also stopped logging into the gastric sleeve boards.  It's just too depressing.  Same reasons pretty much.

Basically, I'm still breathing, so that's something.  I'm still in constant pain and I'm now physically dependent on my pain meds, so there's another demon I'm battling.  I'm preparing for another EGD next week along with a wireless menometry test.  I'm still a medical mystery.

I will try and get back to logging about everything.  I have missed this blog as an outlet.  My cathartic little ranting place... Oh how I've missed you.  I'm still out of work on disability and trying to get signed up for social security disability.

Currently it's 90 degrees in Delaware, so my arse is sticking to my leather desk chair.  I will move some files around tonight and see if I can remember how to upload some updated pictures...

Again, thanks to those of you who were checking up on me.  I'll try and be less of a hermit.  I promise.

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*