Friday, June 7, 2013

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.

Wednesday, June 5, 2013

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...

Thursday, May 30, 2013

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  =)

Wednesday, May 29, 2013

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.

Thursday, November 22, 2012

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

Monday, November 12, 2012

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.


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.