Birthday Weekend ~

September 21st is the greatest day of the year ... because it happens to be my birthday :-)  Wow, 27 years old.  Crazy.  

Even though I love this day and it always makes me feel special ... deep down there is always that thought that this will be my last birthday.  Then I say to myself, "Louisa you are so dumb.  You are going to be an 80-yr old mall walker like Barbara Ann Hughes (she's my old boss at the nutrition private practice)".  This year, my internal focus was "this will be my last birthday with these ole lungs" (my wifey Amanda gave me that little pep talk).  No guts, no glory is my mantra for this year!  I have things to do, people to meet and places to go.  This transplant is just a long-awaited bump in the road, nearly 3 years in the making.  And I will overcome it.



Back to my birthday .... Mom came up Friday and took me out to lunch.  Beasley's Chicken and Waffles (sounds odd, but oh so good) and a little shopping for this new tote.  Hey, a girl has to carry her oxygen tank around in style :-)

I had some special guests come over ~ 

Amongst the others, the adults - Leigh Ann, Josh, Hillary, Brian, Kyomi, Grace, Robbie, Kim and Donald.  We had dinner at Armadillo Grill (yummm) on Saturday, and had a Sherrill family brunch on Sunday at our house.  Thank God for family.  Oh yeah, how could I forget?   My wonderful husband gave me this (it's pink and glamorous).  

It only took him a few hours to find it, with my help of course ... b/c I know where everything is in this house.  Women have a wider peripheral vision, says Dr. Oz.  Or it may be because I put away everything where I think it should go.     

   

     

Losing Control

A few months ago, after an appointment at UNC's transplant center, my mom and I were sitting at the kitchen table, talking about if I should move forward with an evaluation.  My mom thought I should get going on the evaluation.  At that time, I still wasn't sure because:

A. I was in denial that I was sick enough to need a lung transplant

B. Anxious, because I knew the evaluation was a lot of poking, proding and other unpleasant things; quite the ordeal, if I do say so.

C.  Scared about what my future held if I started on the transplant track - stopping working, multiple appointments, telling my friends/family about lung transplant.  Things I didn't want to happen.

D. Overall, disappointed that I had let my lungs and my health get to this point.

E. And many, many other random thoughts that went through my head that day.

Mama said to me, as I was crying and staring at the floor and going in to my 'shut down' mode, "You are hesitant about a lung transplant because you can't control what will happen.  And I am mad because I can't fix it".  Wow.  What an insight, and it couldn't have been more true.  I am very stubborn, I like doing things on my terms and I feel like I know my body better than anyone.   So this evaluation, at a new hospital with people who do not know me but are essentially determining my fate .... ugh.  Not my ideal situation.  And my poor mother.  She can't fix the pain or anxiety or make my lungs better.  What a trying time for us both! 

As a Christian, I know God is ultimately in control of everything.  And I reap some satisfaction in that, surprisingly.   Michelle Duggar, of TLC's "19 Kids and Counting", once said something along the lines of, "I am glad we don't know the future.  How could we ever live in the moment and be happy if we knew what was going to happen to us?"  Such insight!  

Therefore do not be anxious about tomorrow, 

for tomorrow will be anxious for itself. 

Sufficient for the day is its own trouble. 

--- Matthew 6:34

  

Cinnamon Sugar Bagels

Yum.

I love Breuger's Bagels.  I always always get a cinnamon sugar bagel with creamy peanut butter and a pint of chocolate milk.  And I carefully observe to make sure I don't get jipped on PB, because having too little PB is just too dry and plain bad.  The sweetness of the cinnamon/sugar with the PB on the thick toasted bagel.  And then ... (hallelujah) the chocolatey milk to wash it down .... ooh nom nom nooomm.  I estimated atleast 700 calories for the entire meal.  And ~$4.00.  So, my super smart husband suggested I try to make them at home to save some $$$ and driving time. 

Ingredients:
Pack of white (or whole wheat) bagels - the couponer in me only buys them when they are buy 1, get 1 free ... making them <$2 for a pack of 6 :-)  Take that Breuger's.
1/2 cup white sugar
1/2 brown sugar
1/4 cup of cinnamon
1/2 melted butter

Directions:
Mix sugars, cinnamon and melted butter together.  Then taste with your finger ... mmmm.  Okay.  Now place bagels on a cooking sheet for toaster oven, middles facing down.  Spread/brush sugar mixture well onto bagels.  Toast for 5-8 minutes, or as desired.  Take out, and let cool so sugar mixture will harden even more. Spread on peanut butter (or Nutella??? - that might be sweetness overload) and enjoy.

It's amazing.  I hope you can handle it :-)    

Being uncomfortable

In order left to right - Amanda H., Karen and Me

     I met my friend Amanda H. for coffee today.  I met her through wifey-Amanda.  After moving to Raleigh to teach elementary school PE, she moved in with me and my roomates for one year.  She is one of the nicest and most indearing people I know.  This picture was taken at my friend Karen's wedding.   On the 2-hour road trip back in May 2012, I told Amanda I was considering a lung transplant.  Today, I told her that I have almost finished the evaluation and will most likely get one in the near future at Duke.  Needless to say, she was very supportive and positive.  We talked a good while about the process, and she encouraged me to continue getting out and talking to people about my feelings (good or bad).  I know she will always be there for me.  *Tears*

     During our conversation, she expressed how uncomfortable medical testing can be, even if it's not painful.  She has been having bouts of kidney stones and recently had a CT scan with contrast.  She was not mentally prepared for an IV, contrast and the machine itself, and ended up taking a whole day off of work to recover.  She felt like a weenie compared to most people because this test wasn't that invasive.  After reading Sick Girl Speaks, we have to understand that everyone has different thresholds and experiences with illnesses/pain/tests/etc.  It's important to have empathy and compassion for people no matter how their situation or feelings compared to your's. Yes, compared to my heart cath, her CT scan with contrast was not as invasive.  But for Amanda, it was a big deal and truly threw her for a loop.  I understand that and do not blame her at all for her feelings.  Personally, I HATE having blood drawn and ABGs.  It's just a small, quick needle prick, but I get so anxious and upset (especially if they don't get it on the first try) nearly every time.  Yet, my husband can go and donate blood (my mind says - who would voluntarily have blood drawn???) and act like it's so easy-peasy.  Not it's not.  It's traumatic in my world.       

    Life is full of uncomfortable times.  It's important to accept it, not to dwell on it and keep going.  You can't always predict and prevent being uncomfortable.  And no one can take that uncomfort from you, though drugs can do a pretty good job :-)  This whole lung transplant process is very uncomfortable on many levels for me.  Not just the physical poking and proding ... but being anxious about the future poking and proding.  I have alot of procedures, blood draws, IVs, ABGs and pain in my future.  Sometimes, these thoughts consume my mind, and I truly think "I can't do this" even though everyone assures me that I can.  But if I quit this transplant path ... that means I'll die.  So really, there is no easy path at this point of my disease process.  That is a terrible feeling.  I'm not 100% comfortable yet with Duke taking over my medical care because I have been so comfortable with my CF team at UNC.  I know I will not be comfortable working out for 3 hours/day in rehab.  I am not comfortable with the change of not working.  I am not comfortable unloading groceries.  And Mama can't change that, though she tries so hard :-)  

   So, EVERY DAY we have to carry on, no matter what comforts or uncomforts life brings.

Pets

Isn't this face enough to keep a dietitian disabled :-)  This is Will, our vizsla/beagle mix (we think) that we adopted about a month ago.  He's settling in nicely.  He's been to 2 out of 8 obedience classes, and can effectively sit when undistracted.  He also likes Greek yogurt more than peanut butter in his Kong toy.  Weirdo.

<---- Saber, orginiall Justin's cat.  Not as photogenic.

 Miss Charlotte, originally my cat.  She could be a cat model.                                                                           ---->

 Will and Miss Charlotte get along well.  I got Miss Charlotte when I was in graduate school, straight from the Lenoir County SPCA in 2009.  She is more accustomed to being around other animals.  And she's friendlier than Saber.  And 90% of the time, more cute :-)  Saber was found in a barn in New York by our friend, Andrea.  She brought him down and sort of gave him to Justin shortly before we started dating in 2007. 

The vet says he needs some confidence.  So when we play tug of war, I eventually let him win.  Is that bad?  I also purposely throw the toy sort of near our more tempermental cat, Saber (whom Will is somewhat afraid of) to help them both get accustomed to each other.  Is that bad too - I feel like it is torture?  Working with him and following all the tips and types of training and ways to interact with him .... he's just short of going to a psychiatrist to build his confidence.  Sheesh.  It better work.  

On other notes ... I am starting pulmonary rehab at Duke on September 24th.  I am pretty exited - being home all day with no concrete schedule is not for the disabled dietitian.  And you have to do at least 23 sessions prior to surgery and after.  4 hours, atleast 3 days/week - yikes.  My wife/BFF/tertiary caregiver, Amanda, is a exercise physiologist for a cardiac/pulm rehab program at another hospital.  She is excited for me, and promises I won't die.  I hope (cross my fingers) it will help me gain some weight.  I'll also learn more about transplant and make some new friends, whom I am slightly afraid might be in the 60s and 70s based on the folks I have met in the clinic who are post-transplant.  

I also, compliments of my UNC CF team, am starting an antihistamine drug that also acts as an appetite stimulant.  Let's hope both that and the exercising help me plump up.   

In Need of Recipes ...

So far, the evaluation seems to be progressing well.  

My major goal to work towards right now is to (no judgement allowed) gain weight.  Now, for you and for about 98% of my patients, this is an easy (and not always recommended) thing to do.  However, for me, it is taking more and more calories/energy to breathe and (tail going between my legs) eating has not been my first priority with all the changes that are going on life right now.  I have about 8 pounds to go to get back to my "normal weight" to my body can have "some reserves" for after surgery.   As a Registered Dietitian, I know this is important, and I can tell you all day about high-calorie foods to eat, ways to add calories, snacking, supplements, counting calories, etc.  But as the person with CF going through a transplant evaluation, recently stopped working, on oxygen, who gets exhausted going grocery shopping  ... it is much easier said that done.  I have known this for quite some time, going through periods like this throughout my life.  I think living this disease has given me geunine empathy for people who face nutrition challenges in leiu of their disease(s).  Although eating is a basic necessity of life, it is something easily controlled by the patient's mind and can go on the back burner when you have other things occupying your mind. 

It is supposed to work like this: when a person is not hungry, they do not eat.  However, for a good chunk of Americans ... this is not the case :-)  For ill people, this IS the case and more.  I may have a slight desire to eat, but I'm not sure WHAT I want to eat.  Then I don't feel like getting up to prepare something to eat because it's too much effort and it's exhausting.  Then I lay on the couch, watch TV, take medications, pet the dog (aka Will) and notice how happy he looks napping on the plushy couch.  So then I probably fall asleep.  Before I know it, it's 2:00 and I haven't done a darn thing, including eat anything of real substance.  Sighs.   That is just how it goes.

Soooo .... my sister-in-law Hillary sent me this website to help me out:

http://happymoneysaver.com/making-50-freezer-meals-in-one-day

Great concept ... with recipes :-)   Thanks, Hillary!

Below are a few more of our favorite, higher-calorie recipes.   For 2 of our bridal showers, the guests were encouraged to complete a recipe card for us to start a recipe book collection.  We have used some, and they have been delicious.  So another big Thank You if you provided us a recipe at one of our showers :-)

Sauteed Apples - we add these to waffles on the weekends.  Not quite as good as the Cracker Barrel fried apples, but way cheaper.

Baked Apples and Pecan Pancake Bake - Yummy, sweet and easy.  Justin and I like to eat breakfast foods.  
** Confession, I prefer to cook my eggs with bacon grease.  We have 2 jars of left over grease in our freezer.  Bad, dietitian ... bad! **

Pioneer Woman  - We have cooked a few of her recipes, and they have been easy and delicious.  I also love her show on Food Network.  Sometimes I feel full just watching her cook and eat on TV.  Her recipes are very hearty, and not heart healthy.  Thank goodness her kids are actively working on the ranch, or I'm sure they'd be eat up with childhood obesity (pun intended).

Shrimp and Grits - we add onions, peppers, diced Italian-seasoned tomatoes and sausage to our sauce.  But very hearty, delicious and loaded with fat. 

What are some of your favorite recipes??