ne plus ultra, rambling

Self-destructive behavior.  That’s what I call last night.  I did not stop at my one drink limit.  And I have the headache to prove it.  A well earned one though.  I had a lot of fun, and every now and again you have to do that.  I made a laughable attempt at playing pool, but won when my friend scratched on the 8 ball.  Then we played darts.  I’ve never played darts before but it’s something I’m going to do again.

I don’t really have anything to say, I just felt like writing.

Tomorrow I have nothing going on, so I was thinking about shooting the sunrise.  The sunrise it good for the soul :)  Wed I go back to work for the week.  It’s also rock climbing night, Thurs is a strobist meet-up, Friday is a Cloud Cult concert, Sat my sister is in town and a friends birthday party  and Sun I can think about breathing again after work.  Sun is also my going out night I decided.  LOL.

Andrew and I are over a month behind on some of our tv shows and we’ve had the same Netflix movie forever.  We just don’t have the time.  And it’s not even Summer!  I like being busy though.  I like that I can be.  That I have the energy.  Things are getting back to a good normal.

I can’t believe it’s getting towards the end of March.  It’s been 5 months since my surgery.  First, and foremost, surgery was worth it a million billion percent.  I feel like I’m getting my life back.  I’ve gained almost 15 lbs.  That’s right, GAINED.  I don’t know the last time I said I’ve gained weight, and this time it’s going to stay.

I’m also a little diabetic now.  That could still go away, or get worse.  Right now I’m on 8 units of a long lasting insulin (lantus) once a day and that’s it.  It’s been corrected a couple of times in the last few months.  I check my blood sugar before big meals, or three times a day.  Right now it’s well controlled in the 110s. 

So how was surgery?  It sucked.  LOL.

Initally I spent three weeks in the hospital.  When I came back lucid I was in my own room.  I really don’t remember the ICU.  The only part of ICU that I remember is the nurses trying to roll me, or move me, and having a panic attack because it was so painful.  Apparently they gave me more drugs and tried it again later, I really don’t remember. 

I do remember waking up in my own room.  I woke up with a drainage tube in my abdomen, a stomach drainage tube, feeding tube, oxygen, a pik line in my neck, iv’s, monitors….

After a few days they got me out of bed to use a commode next to the bed.  I needed lots of help.  In fact, I needed a lot of help for a good week to use the bathroom next to the bed.  The doctors and nurses got me started in physical theraphy right away, relearning how to get up and move and get out of bed…weeks later walking and getting into a sitting position and climbing stairs….

After a few weeks there was still some discrepancies between doctors on whether or not I could start eating, so I was given food.  Soft foods.  I was happy.  Spend a couple weeks not eating, and whether you feel up to it or not, you’ll want food.  I was still on a feeding tube and a stomach drainage tube.  After three weeks, and still feeling really rough, I was sent home.  At this point I was on liquid methadone (directly into the feeding tube port) for pain.  I was also on an anti-naseau medication that I was taking quite often.

I spent a week at home before going back to the hospital, and during that week I ate quite a bit of food.  And vomitted a lot.  And took a lot of anti-naseau medication.  It didn’t help.  It was getting bad.  I don’t remember what exactly made me go back to the hospital but I’m sure it was pain.  The local ER did x-rays and kept me for a while, then sent me back to the twin cities to the surgeon.  They let me go by personal vehicle.  UM-Fairview did a strait admission, re-did all the tests and then did some more.  They kept me for 8 days.  I had an obstruction.  I should have never been allowed to eat in the first place.  Those 8 days in the hospital were days with nothing by mouth.  Nothing to eat or drink.  And that diet continued after they released me. 

I have to add here that you haven’t really seen anything until you’ve seen doctors and nurses sucking out your insides through a stomach drainage tube every hour or so for a few days.  Flush with water and repeat until the siphon is clogged with chunks of food, or the water starts to come back clear instead of green sludge.  You’re welcome for that little bit.

For the next couple months I had nothing by mouth.  From Nov until the beginning of Jan, until I could keep the stomach drainage tube closed without getting sick for an extended amount of time, I was not allowed to have anything by mouth.  I lived on the feeding tube.  I lost more weight.  I was getting enough fat and calories where I should have been gaining weight, but I still lost 1-2 lbs a month.  I went down to 98 lbs.  (And have I mentioned I’m 5′8″?)  When I was told I could have some juice, nothing could have made me happier.  And food?  HOLY SHIT!  FOOD! 

Pain was an issue.  Even after coming home, being on methadone, being on oxycodone, I was in a lot of pain.  A lot.  I was in the ER every week for pain control.  Every couple days it seemed I was back at the hospital for something.  Pain medication, x-rays, MRIs, consults…And I had a home nurse.

In January everything changed.  My stomach started working again.  I started getting energy back.  I felt better.  Then we started getting me off of methadone.  It didn’t go so well.  I ended up in the worst pain of my life.  In fact, worst pain doesn’t begin to deescribe the pain.  Morphine, dulodid, something stronger, then fentanyl.  Lots of fentanyl.  My own fentanyl pain pump, then an ambulance ride back down to UM-Fairview.  Turns out I was just in withdrawls.  Methadone is not a fun drug to be on, or come down off of.  My doctor started me back up on methadone and after I was stable again we took me back off of it even slower.  The second time around it went much smoother.

Now I’m rarely in pain bad enough to take anything.  In fact, it’s been weeks, months?, since I was.  I’m still on reglan 4 times a day to make my stomach/digestive system work.  It’s slow otherwise.  I do, and always will have to, take digestive enzymes every time I eat.  And that’s about it.  Oh, and no more drinking for me.  One drink a week and no getting drunk.  Doc’s orders.  I’ve never been much of a drink though, so…not a big deal.

Physically I still can’t do a sit up.  Not even if it was to save my life.  My core is still really weak.  I did just get permission to start exercising again though.  I’ve started rock climbing (no falls) and power walking on a treadmill.  No sit-ups for me, they’re apparently the worst thing I can do.

I’ve been back at work since the end of Jan.  Overall I took about 16 weeks off of work.  I had to come back by the first of Feb for insurance reasons and I made that goal.  And thank god for that insurance, over that period of time they paid out about $300,000.

For some reason I really didn’t think I’d see the first snowfall this year, but I was wrong.

Friday night I spent the night playing poker with some friends and when I left to go home in the morning, I had to brush the snow off my car and the roads were slippery.  AND THE SNOW STAYED.  Usually the first snowfall melts as soon as the sun comes up (or at least shortly thereafter).

And I am not complaining, I love the snow.

——————————————————————

It’s been a full weekend.  After a long week.  I hung out with one group of friends Friday night, had a bonfire with other friends last night, and stopped at a LAN party on my way home to drop off food and say hi to other people.

It’s weird for me.  I’m basically just going to disappear for a few months.

I’m just trying to clean the house, get everything ready to be left alone, make all my doctor appts, and think about it as little as possible.  Or maybe I’m so calm about it because I know how much it’s going to help me…I know I’m going to be okay.

At any rate, yay for only one more week of work.  I’m already exhausted and this week hasn’t even begun.  I just need to make it through this week.

And on that note, I’m going to bed.

That a Total Pancreatectomy with Islet Autocell Transplantation and it’s happening on the 19th.

Compared to most people, the time I’ve had Chornic Pancreatitis has been pretty short, only two years.  For me, it’s been the longest two years of my life.  I’m a different person than who I was before all of this started.  I used to be active, running 3-4 times a week, rock climbing, hiking, camping…going to school full-time, working full-time, keeping the house clean (jokingly OCD-ish).  And being social on top of all of that.

Now making it through a week of work is really hard for me.  I sleep an easy 12 hours every night, and when I’m awake most of it is spent on the couch, and that’s on a good day.  Sometimes I just sleep for days.  I physically can’t exercise, it hurts and I’m just so exhausted.  Although sometimes I do okay.  Maintaining weight is so hard for me.  I keep losing it and there’s nothing I can do.  I’ve lost about 40lbs.  I’m down to 103 lbs, I’m 5.08.  I think it’s disgusting.  Most clothes don’t fit.  I take Viokase 16 (5 horse pills with every meal) to digest my food and try to help me “gain” weight.  The Viokase works in the sense of not getting diarrea and helping to reduce pain when I eat.  As for gaining weight thought…pfft.  I used to be a healthy size 8, now I’m lucky if I fit in a 00.  You can see my ribs in my chest.

Even on Reglan and Compazine, I still have to be careful about what I eat.  French fries are only a dream, no matter how many pain killers and anti-naseau pills I take.  I’m pretty much down to meal-replacement drinks, and fresh fruits and veggies.  Anything else is almost guaranteed to cause me more pain.  Every now and again I get the goofy idea to try something fun.  It’s always a bad idea.  But I’m only 25.  Living this way is really hard.

A few weeks ago U of MN - Fairview did a Pancreatic Function Test while doing an Endoscopic Ultrasound (or right after since I was put under anyways).  We found out my pancreas no longer produces the enzymes I need to break down and digest food.  Since the MRCP only shows 4 or 5 of the 9 criteria for CP, the PFT was pretty difinitive.  The day after the test I coughed up blood all day.  Another day in the ER.  All the doctors and nurses around where I live know me because I’m there so often.  Thank god for good insurance.

Right now I’m not diabetic.  This past Monday I had my first fasting mixed meal tolerance test.  I’m curious as to how that came back.  I think I’ll call about it later this week if I don’t see anything in the mail.

So that’s kinda where I’m at.

———————————————-

I think my last medical post on here said I was doing pretty good.  Last year I started a medication for chronic pain, Cymbalta, and it’s worked really well for me.  CP (Chronic Pancreatitis) just keeps getting worse and worse though.  So the pain and the exhaustion and just gotten slowly worse and worse.  Although not as bad as it could be.  I’m on relatively low doses of narcotics, and I’m still able to work full time (my job doesn’t require me to move around). 

In June I started rapidly losing weight again, almost 10 lbs in two weeks.  I found that by stopping sugar I could basically control the cramping and diarrea I was having.  (And I used to have cronic constipation.  I stopped Miralax and Amitza- given for IBS.)  There was no reason this started, other than the CP.  Since June I’ve only lost 4 more pounds, and it seems to have evened out now by cutting sugar and further restricting my diet.

When I saw my GI, Dr. Freeman at U of MN - Fairview in July, he mentioned further testing and TP-IAT.  The hospital boards/GI surgical team immediately approved me.  I’ve had pancreatitis, I’ve had my gallbladder and appendix removed, I’ve had dual spincterotomies with stent placement twice…all with no lasting improvement.  I had testing through August and met with with Dr. Beilman at the beginning of September.  He also approved me.  My insurance company immediately approved me with no problems.  Now I’ve had immunizations for surgery, and I just have one? more doctor appt before the big day.

——————————————————

I’m going to spend 12 to 14 hours in surgery.  Three days in ICU.  Three weeks in the hospital.  I’ll wake up with oxygen, possibly a stomach tube through my nose for nausea (either that or directly in my stomach), I’ll have a central line IV (running insulin, pain medication, and fluids), heart monitors, blood pressure monitors, 02 monitor, a feeding tube, drainage tube, cathader, and those fun massaging things on my legs for clots.

I’m guessing they don’t have mirrors in ICU.

The day after surgery they say to expect the lowest of a 5/10 on the pain scale and that’s with all of the pain medication they can give me.  My goal is to be able to sit up with help.  By the end of the first week my goal will be to be able to stand.

I have so much floating around in my head right now, it’s hard to end this post.  But I’m going to try.  I’m going to try to start writing again, not for me, but for anyone else who may find this blog who has CP or who might be thinking of having a TP-IAT.  This is my story.

p.s.  I’m excited, I’m scared shitless.

Saturday night was the Fashion Forward charity event.  Nadine said we raised close to $6,000 for Safe Haven.  Awesome!  I was pretty disappointed the whole thing fizzled pretty fast, and half of what they said was going to happen, didn’t, but…oh well.  Doing the runway was a lot of fun.  Someone yelled, “I want you!” while I was posed at the end of the runway, and I’m not sure who it was, cause it wasn’t anyone in my main group of friends that was there…hmm….

I got to meet some new people though, and I learned a lot from all of this, so overall it’s been a crazy, stressful experience!  LOL

Andrew’s birthday was today..well, Monday…I think it’s technically Tuesday.  We had 7 people at our house this past weekend.  I made his birthday cake from scratch.  A dark chocolate raspberry gnache, the cake is made with Godiva mocha liqueur.  Yum!  And it turned out really, really good.

Now all my major projects are done…I think.  I have one more modeling thing to do for a friend.

Oh!  I found out I sold one of my pictures at the tattoo shop.  I have to make a phone call about that…

(Some of the modeling pictures I took on my flickr site…)

It’s 4am, I’m writing.  I’m not sure why, but here I am.

Work is work.  The bullshit that’s been going on has been pretty unbelieveable, but I haven’t really done much about it.  I’ve been advised to sue, that I should sue, but I like my job, I want to keep it.  And at the same time it’s hard to believe all this bs will really continue, so I’m just kinda waiting and seeing.  I have another trainee right now.  I think by next week he’ll be on his own.  Then, for the first time since I think I started almost 5 years ago we’ll be fully staffed….something will have to happen, we never stay full-staffed.  Does anyone?  The new guy is a good fit though, with the rest of us, so hopefully he’ll stick around a while.

I’ve been doing a lot with my photography.  I had a piece in a coffee shop in January, now I’m a part of a show in a tattoo shop.  This weekend I’m taking part in a modeling/photography charity event (fashionforwardcharity.com).  I modelled.  And I did pictures of models.  Not the most organized project, but I’ve been learning a lot.  And it’s for a local women’s shelter, so it’s for a good cause.  I’m thinking there’ll be a big turnout.  I’m pretty excited about it.

The tattoo shop opening I met a guy who killed his wife back in the 90’s and got away with it.  Fucked up.  You could tell something wasn’t right with him, but intriguing to talk to.  “This is the most I’ve said to anyone in 4-5 years.”  Given the opportunity I’d talk to him again.

I haven’t been the healthiest lately.  Go figure.  I still haven’t gained any weight since my last surgery last year.  I tried stopping the pancreatic enzymes for a couple weeks.  I wasn’t sure if they were really doing anything or not, I haven’t had any follow up visits or anything.  So, experimentation!  After two weeks my pancreas has hurt for a week.  So…yeah.  That was fun.  Then I fell on the ice outside of work.  I put a hole in the knee of my $160 jeans.  And my knee.  And I bled all the way home.  And it’s black and blue.  And I’m supposed to do this modeling thing on Saturday.  My dress is short.

Let’s make this the longest post EVER.

Last Sunday I went to my dad’s house cause the whole family thought he might be dead.  Or that he could’ve killed himself.  At least that’s what we were led to believe.  So I ended up being the one to drive there, to call the cops to get into his building, to talk to the neighbors.  I’m so fucking sick of being the responsible one.  The adult.  When all is said and clear, in my opinion, it sounds more like my parents fucking with each other.  According to my dad his cell phone just didn’t work for a day.  My therapist thinks I need to set boundaries with both of them so I’m not dragged into the middle of all this bullshit again.  I can’t deal with.  It hurts.  I was scared shitless.  When I was 17 I got the call of “your sister OD’d and might not make it through the night”.  I deal with people finding their loved ones dead all the time.  This is way too real to me to have people just fucking around with each other about.  I could go the rest of my life without hearing the words “Your mom/dad did this….so I’m going to…”  My therapist says I need to.

My insomnia is horrible again.  I’m on more meds.  They don’t help.  It’s probably all the crap going on.  The strongest does of lunesta they can prescribe and a sedative.  lol.  They’re supposed to interact and should knock out a horse for 8 hours.  I start waking up after about 2.5-3.  Lucky me.

I forgot my sister’s birthday last week and I feel horrible about it.  Especially since she’s made an effort to make my last two show openings.  I’m not sure what to do, so I haven’t done anything, even though I’m sure that’s not the right answer.  I’ve just been caught up in everything else.

Andrew and I got Guitar Hero World Tour.  I kick ass at the drums.  They’re my favorite part.  I still like guitar/bass, I’ve just always wanted to play the drums, and this is like, my chance.  heh.  It’s fun.

Sometimes you just gotta give back.

I don’t feel like writing.  I might write about shit I’m not supposed to.

I don’t really know why I have a blog anymore.

I keep going through this.  Keep it or not, keep it or not.

I can’t talk about the things I want/need to anyways.

Maybe it’s time to start over somewhere else.

Feeling Emotional

Originally uploaded by pete (aka Amanda)

Self-portrait :) I haven’t posted one in a while, so I thought I would. I was up playing with my camera this past weekend. I’m lined up to be in another photography show in Feb. at Zappia Tattoo (downtown Duluth) with a black/low key/dark theme (Noir). Next door is DeKats, and there will be a white/light/high key show at the same time.

So this past weekend I’ve been brainstorming and started taking some shots and getting some noir-esque shots down. I did some self-portraits while I was it. You can check them out on Flickr.

For -13F we should have more snow.

I have high hopes for this weekend.