Friday, January 11, 2013

Bummer

Thanks to the lovely winter weather for this weekend, my movers can't get my things from my apartment in Pierre and bring them to Madison.  So, no electric fleece throw, no fleece blankies, and no craft stuff to take with me.  Kind of bummed about it, but certainly don't want them to travel on bad roads--especially pulling Lucibelle (my car).  So now I have to think of something else to do.  I always wanted to write a book, but I doubt that will happen.  I can't draw a stick person, so I won't be doing any drawing.  I can eat very little, so doing a bunch of recipe testing is a definite no.  I can't blog constantly or you will all be falling asleep.

If you have any suggestions--let me know! 

Monday, January 7, 2013

Farewell, Pierre!

Well, I am about as ready as I can be to leave tomorrow. Between 5:45 and 6:00 AM.  I can only take 2 suitcases and a bag on the shuttle with me.  Everything else I have to hope the movers will be able to bring on Saturday.  So hope for good weather.  Keep hoping for Sunday, so that we can leave for Milwaukee.  I think we have taken care of everything we could possibly need to arrange for being gone.  I have to go to the bank in Madison to give them a copy of my ID so that my account is ready.  I also have to sign the leave for the apartment that I will not be able to move into for several months.  But can't do that from here in Pierre.  I actually feel so tired, that I don't even know how tired I am.  Most likely, I will feel that as soon as we get to mom and dad's and I crash on the sofa.  Even the psycho dog won't bother me tomorrow.  For now, need to unplug the TV and put the bubble wrap on it so the movers can just pick it up and put it on the truck. 

I do have some pictures of Milwaukee--courtesy of Google Earth.  So, here is the house where we will be staying and some of the area attractions:

The house on 30th Street, with the hospital in the background.  Guess
that means we'll be hearing lots of sirens and helicopters!

Real bagels just 3 blocks away.  YUMMY!

Bucket List--eat at Chipotle. Cilantro lime rice, the yummy marinated
chicken breast, and a nice warm tortilla.  Maybe just a light smear of mild salsa.

OK, it's actually the No. 1 Chinese Restaurant, but the post is
blocking the 1, so it just looks like "NO Chinese Restaurant."  Is it
even legal to have a strip mall with no Chinese restaurant in it?

I loved the Walgreen's sign right at the turn in to Wal-Mart.  We don't
even have to go out onto the main road to get there--about 3 blocks of
side streets and a cut through a parking lot.

Two places we will not be going.  No liquor stores, and NO Indian food!

Good night, and good bye Pierre!  I will miss my friends, my little Nashers and Gogan buddies, DakotaMart, DakotaMart Pharmacy (Rob rocks!), Scrappin' Ladies, Hogen's Hardware Hank, Red Rossa, Dr. Plumage and Bobbi, and the crazy lefse ladies



Saturday, January 5, 2013

Season of Change

I guess my New Year's resolution is accepting change.  No longer being able to work.  Moving from Pierre to Madison, and getting a new liver.  Next week I leave Pierre, and my belongings will be moved to mom and dad's spare garage.  I will stay with them for the few days before we head to Milwaukee to begin the final prep testing for my transplant.  My numbers have remained elevated for long enough now that they would like me to be in Milwaukee should a liver with my blood/tissue match be available.

Check the box when you renew your driver's license, and
make sure your family knows of your wishes.


My apartment in Madison will be available the first part of February.  My stuff may move into it, but I won't be for a while. I will be hospitalized for several weeks, then remain in Milwaukee for observation for a while before going home.  I will have to stay with mom and dad for a bit until the doctors feel I am able to take care of myself without monitoring.

So, here is what my apartment will look like, courtesy of dad's nifty camera work (really--pictures of the closets but not the bedrooms?) and mom's debut as a Price is Right model/Vanna White wanna-be.  Thanks for running over there to do that; I do appreciate it. But I wouldn't be your daughter if I didn't give you at least a little grief.

The kitchen--view 1
 
The kitchen--view 2
 
 
The kitchen--view 3 with Vanna White Hair (mom) showing the pantry.
 
Vanna holding up the wall
 
Living room
 
Private laundry!
 
Master bedroom closet
 
One of the bedrooms
 
Closet in guest room a/k/a the "craft" room"
 
Stay tunes for exciting (or not so exciting) updates from the move and the trip to Milwaukee.  There will be NO surgery pictures taken or posted, so you can open your eyes now, Brandy!
 


Wednesday, January 2, 2013

Am I Happy or Scared?

I spoke to the transplant center this morning after having my labs drawn on Monday.  My MELD is still elevated.  So as of now, I am #2 on the B blood list.  The person at #1 is a liver/kidney dual transplant.  I will find out tomorrow if I continue to stay in South Dakota, or head to Wisconsin to wait and prep for transplant so when the call comes saying they have an organ, I will be ready to go.

It is good news, in that I will be getting a new liver so that maybe I can feel better after recovery.  On the other hand, someone has to die for me to live.  And I have to live with their spare parts in me.  How do I really feel about that?  I've kind of been grappling with it all day, and it's brought me to tears a couple times.  Then I feel positive that I won't have to feel lousy like today forever.  All while I've been trying to clean, sort, and pack to move.  I can only do so much before needing to rest again.  I hope I sleep tonight, and don't lay awake thinking.  I hate that.

So, until tomorrow after the transplant committee meets and I get my answer, I will pack a few more boxes.  Yuck.

Tiramisu the Easy Way

I love tiramisu, but not things like raw eggs.  In fact, I'm totally not allowed to eat them.  So I came up with this recipe as an alternative.  I have also given the ingredients with both alcohol, and a non-alcoholic substitute since I can't and don't drink.  So choose which way you want to go, or mix it up a bit.



2 eight-ounce containers mascarpone cheese, softened
1 three-ounce package cream cheese, softened
2 cups heavy whipping cream
1 teaspoon rum extract or 1 Tablespoon rum
1/4 cup Kahlua coffee flavoring syrup (like Torani), or 3 Tablespoons Kahlua or Tia Maria
1/4 cup powdered sugar
1/4 cup unsweetened cocoa
1/3 cup finely shredded dark chocolate bar
1 cup very strong coffee, cooled (I use Medaglia D'Oro Instant Espresso Coffee)
2  fourteen-ounce packages Alessi Savoiardi crispy ladyfinger cookies

Whip heavy cream until stiff peaks form.  Whip together mascarpone (as Giada de Laurentis would say:  maas-car-POH-nay) and cream cheeses; beat in powdered sugar, half of rum/rum extract and half of Kahlua/Kahlua syrup.  Fold in whipped cream.

Put coffee and remaining rum/rum extract and Kahlua/Kahlua syrup in a flat container.  Roll savoiardi in mixture to allow each side to absorb just a little.  Do not let set in liquid or cookies will get mushy.  Start by doing about 1 1/2 packages, since it doesn't usually take all of both packages of cookies.

Line bottom of plastic or glass pan (9" x 13") with a layer of cookies.  Do not use metal.  Top with half of filling mixture.  Dust with half the unsweetened cocoa powder.  Layer remaining cookies over filling.  Top with filling and dust with remaining cocoa powder and the shredded dark chocolate.

Cover loosely and refrigerate overnight to let flavors combine and cookies to absorb the flavor fully.  Cut into squares or rectangles.  If desired, dust serving plates with unsweetened chocolate, and top with a dollop of whipping cream and a few shavings of dark chocolate.

Tuesday, January 1, 2013

It's been a while, hasn't it?

Just noticed I hadn't posted anything since OCTOBER!  Sorry about that.  I was dealing with a lot of stress at work, and it kind of put me in a funk.  Don't have to worry about that anymore since I am no longer working.  I had some health issues earlier this month that put me in the hospital for 5 days.  Basically 5 days of fluid push, so I wound up a tad bloated and had my first bout of abdominal ascites.  Finally got to Sioux Falls to see the liver specialist and had an ultrasound done.  And a lovely paracentesis to remove the fluid.  This is what was removed:



Four 1.1 litre bottles, plus .6 litres in the fifth.  A total of five litres, or just about 1.5 gallons of fluid.  Which  is about 14+ pounds.  With the additional fluid I've lost since then (that wasn't in the abdominal pocket), I've lost about 34 pounds now.  Since 12/12/12.  Not fun!  Fortunately the fluid was clear and had no infection or bacteria.

The foamy white stuff on top is protein.  The loss of the protein required an infusion of two units of albumin.  Infusions are NOT fun.  They cause much bruising, especially since they'd had so many problems finding good veins all month anyway.

If you look at the center of the bruise, you can see a wiggly unbruised line.  That was the infusion needle.  This photo was taken four days after the infusion.  The discoloration had started to fade.
 
Now if only my MELD score would go down.  It had been running 18.  A year ago it was 14 to 15.  In the hospital it hit 23.  We've gotten it back down to 20.  Now I have to re-MELD monthly for the transplant center so they can see where I'm at.  Had those labs drawn again yesterday.
 
I am still weak, and get fatigued very easily.  I am not up to working full-time anymore.  So I am moving closer to Sioux Falls to have easier access to the transplant center by air when the call comes.  Or I can ride with my parents if it's a "you need to be hospitalized, but no organ available right now" situation.  Hopefully I can find a part-time job to help while I apply for disability.  I found a great apartment with 2 bedrooms, and it was completely renovated inside and out last summer.  New carpet, blinds, cabinets, countertops, appliances (including the smooth-top range like the one I have now).  Finally will have space for my craft stuff.  Packing, sorting, and cleaning are going slow but sure.  I have to take regular breaks and drink plenty of fluids.
 
In the next day or two, I should have my tiramisu recipe posted at the request of a few people on Facebook.  For now, time to do a little more work on the apartment before I shower and turn in for the night.  Very tired tonight.  Hope to sleep well.
 
 

Friday, October 5, 2012

It's been a few weeks

A crazy few weeks.  All sorts of things going on, from work, to getting together with friends, to a rush trip to Sioux Falls to go to the doctor with mom.  Her pacemaker has needed a "tune up" to try to get her heart going stronger, so she had surgery to fix it on Wednesday.  She was supposed to go home this afternoon, but started having deep muscle spasms in her lower back, so onto a bit of morphine to control those.  And that delayed her release.  Dad went back home, and will drive back and forth until she is released--hopefully soon.  I had already sent her flowers (thanks to a snafu in the gift shop, she got double the flowers), but wanted to get her a pick me up.  So I sent her a MONKEY!  No, that is not a typo--I sent her a little stuffed monkey.  Now she can see monkeys in the hospital too.  Wonder if Dr. A can go tell her it isn't a heart transplant monkey?

Anyway, here is a little something for mom.  Thank you for making sure we always knew this.


Monday, September 17, 2012

I LOVE Fall



I love the crisp smell in the air.  I love the sound of the drying leaves rustling as the wind blows through them.  I love the thought of baking an apple pie, or a stuffed squash.  And the fact that I got to eat turkey dinner with all the yummy things that go with it (B&G Produce roasted carrots!) for dinner--before they ran out of food just an hour after starting to serve.  What do I love most about fall?  The cooler temperatures and no humidity.  I just feel better.  And I apparently looked better, since my (she makes me say this--"favorite") aunt stopped by my office while she was in town today and she said I looked much better then the last time she saw me.  Apparently in June I looked "scary."  Hello!  I'd been sedated and had tubes shoved down my throat, stuck in a large scan tube, and had everything from my neck to navel echo tested.  And lost a ton of blood because the idiot nurse didn't know how to draw from an IV tube.  There was blood all over the side table.  Still went shopping both days though!  Some things a girl just has to do.   

And I'm very happy tonight--my Lefse 101 class is officially filled!  The class is November 3 at Faith Lutheran Church. Attendees will take home lefse, coupons for lefse equipment from Hogen's Hardware Hank, and a booklet of authentic Norwegian recipes from my very own family.  YAY!  And now it is time for bed.  Snuggled under a huge pile of blankets.  Ahhhhh.

Friday, September 7, 2012

We need a medic!

I will admit that I am slightly obsessed about my garden.  Even when I haven't felt quite up to par, or had my arm in a sling, everything got watered.  I currently have a good number of inappropriately shaped cucumbers!  Very odd.

I also have 6 tomato plants in 5 varieties. The Roma plants are producing well, and the cherry tomatoes are going crazy.  There are 41 little tomatoes on the cherry tomato plant.  Hopefully they will all start turning red.  A few are getting to be an orange-hued green,  In the wind last weekend, one of the vines (on which a tomato and several blossoms were residing) got bent and nearly broke off.  I didn't want to lose the tomato, so I decided to see if I could save the vine and the tomato.  So I wrapped it with white cotton sports wrap and taped it with white paper tape, then tied it a stake for support.  After several days, it looks fantastic!  See--pretty ingenious, right?



Now if only the frost will hold off until the tomatoes and peppers have produced enough to earn their keep in watering.  Otherwise, it's going to be just cucumbers next year, and herbs in the raised planters.  I had a dream a couple nights ago that it had snowed overnight.  Yet the snow didn't hurt the tomatoes.  And I didn't even eat anything weird before going to bed that night.  Weird!  Normally I just have pretty normal dreams, and don't even really remember them.  But every now and then there is an odd doozie.

Now out to harvest herbs before I go to work for the day.  Hoping that today goes smoothly.  Please . . . .

Monday, September 3, 2012

The Tale (or Tail) of the Monkey


Please could I have regular insomnia instead of having it tied to an event?  A year ago, I was in the immuno-suppression wing at Avera McKennan (after a $3,258 ambulance ride from Pierre under the influence of lovely quantities of morphine).  I’d had a very high fever, and my labs were totally out of whack (my MELD had jumped to 20+), and I was having bad headaches.  They called in a neurologist with the worst bedside manner ever.  I told her I wanted to see my own neurologist since he was also affiliated with Avera.  She just blurted out “oh, he died.”  Umm, thanks.  I didn’t realize that Wal-Mart did the physician training in bedside manner.
 
She sent me down for an MRI.  To the MRI lab which was closed for Labor Day weekend and only had some dim passageway lights on.  Ever seen Flatliners?  They take people to the deserted basement to do experimental medical procedures on them.  So the tech put the head-immobilizing “Jason” mask on me and handed me a thingy to squeeze if I wanted out.  She slid me into the tube.  She never said “keep your eyes closed.”  Squeezed that thingy so hard it almost exploded in my hand.  I made her take me back upstairs.  The neurologist decided to give me some kind of med that she didn’t run past the transplant surgeon first. 

 Thanks to the pharmacy not listening to me about one of my prescriptions, I had begun slipping into another encephalopathic bout.  Add freaky med.  Result equals delusions.  Dobbie (from Harry Potter) was hiding under the bed and only popped out when I got up to go to the bathroom then disappeared back under the bed.  I became agitated.  The Estonian nurse thought it might help to calm me if she spoke to me soothingly in her language.  Wrong!  She instantly became the German version of Tokyo Rose, there in the VA hospital to hurt the other veterans.  I am not a veteran, nor was I at the VA hospital of course.  I knew I had to go for help.
 
Earlier in the day, they had disconnected all the tubes and such, although the IV line was still in my arm.  So I put on my traction socks, and my robe, and stealthily (or so I thought) left my room and made a break for it.  I went down the hallway I thought the ambulance gurney had come in through.  Guessed wrong.  Nurse Ashley saw me and tried to stop me and have me sit in a chair in the hall.  “No, the bad peoples will see me!”  I kept walking.  She guided me into a conference room and tried to get me to sit at the table.  “No, they can still see me!”  So I sat on a chair in the corner, by the coat rack, huddled behind some kind of projector thing (I think).  She called the doctor to find out what he wanted to do.  The Estonian nurse came in with a pill.  “No!  She’s one of the bad peoples!”  They assured me she was not and got me to take the pill.  I would not go back to my room because Dobbie was still in there.
 
So I got to go sit at the nurses’ station in a comfy chair, looking at magazines (because reading didn’t make sense at that point), and eating cubes of red jello.  Drat Wal-Mart for discontinuing carrying the Winky sugar-free black cherry gel bites!  After a while I was tired and went back to my room.  This is the part that is still a bit fuzzy.  Somehow I became convinced that the reason they had taken me to the MRI lab (a/k/a experimental medical procedures area) was to give me a monkey liver.  I could not be talked out of this.  Even the next day, I was still convinced.  I argued with Dr. A that if they used pig valves for heart replacements, they could easily use monkey livers.  He assured me they didn’t use pig valves, and couldn’t use monkey parts, but if they could, there would be an endless supply and therefore no need for waiting lists.  I guess I finally believed that.
 
After returning home several weeks later, I was greeted by my staff giving me monkey bandanas, texting me monkey pictures (I told you I would get even James), and eating bananas at their desks.  So much love and support!  To this day, I detest monkeys.  Their looks, sounds, nasty bug-infested fur.  I have, however, decided that the classic old sock monkeys are cute.
 
A good portion of last summer has returned to my memory, although not all.  And it possibly never will.  I’m just grateful that memories from prior to that seem to have almost fully returned.  There are still occasional blank sectors on the hard drive of my brain, but I hope that’s just because it was something that I should have deleted anyway.
 
So now you have it.  The full story of the monkeys, or at least as much of it as I can recall.  Or have been told.  For now, I’m just trying to stay healthy so I can put off the transplant as long as possible.