Where to Begin? A Summary of Recent Events

I admittedly wait long periods of time between my posts recently, and the farther apart they are, the more overwhelming it is to try and sit down and write out the most current events. I thought that was just due to trying to remember what happened, the farther in the past it goes. Now I think it's also more about how time keeps moving, more things keep happening, the list of items to blog about and update grows longer and - recently - weightier.

My last post was about getting ready for "Plan B," an upgrade to my PTBD biliary drain - to do angioplasty of the bile ducts with a balloon and open up one of the main ones that has serious scar tissue narrowing. I had that procedure done at the beginning of April.

Here I am, ready to go... little did we know it would be about six more hours wait ;)

I came out of it with a French drain tube doubled in size. The doctor exchanged the 8 gauge drain tube I had to a 16 gauge. Wooey, the first look I got under that bandage made me grateful I'm not a wound care nurse, but much more capable, not as easily grossed-out people are in that profession! :)

I was in a groggy state for a day and a half afterward, but it was so good to be home!

That means it has been a whole month with this larger PTBD, and unfortunately, no changes. I tried capping the drain on two different occasions, following doctor instructions. It went well overall; right now it's capped. I was losing way too many electrolytes in the fluid output of the drain, so I had to. I'm still battling those low levels of magnesium and potassium, as well as working really hard (it's not easy, for some reason!) to keep drinking water and other wholesome beverages, and eat good meals. It's a bummer that there were no changes to my lab numbers after this larger drain; even when the drain bag was attached, my bilirubin was still up at 19. Yikes. And the jaundice has stayed the same, and itching has returned WORSE. Ah if I could pick pain or itching, I'd choose pain. Itching is slow torture!

As I mentioned, there haven't been significant or really even noteable changes, improvements, to my lab numbers. This is the reason for my next big piece of news...

I'm glad we got this news the week of Easter. It made everything easier. I cherish the Hope of and in the Resurrection.
Always - Only - Jesus.

I've been referred to the University for another liver transplant.

(:sigh:)


One of my liver doctors sent over the referral, and I'm just awaiting their call one of these days to set up all those crazy pre-transplant evaluation appointments. It's possibly going to be a busy summer... if only it will be full of things like swimming lessons and dance classes with my Victory bear, rather than doctor appointments and uncomfortable procedures?? I will keep hoping and believing.
It's something that's come up in conversation numerous times since about four years ago when my team started noticing that the PSC (primary sclerosing cholangitis) may have recurred. But it was never so definite or concrete as now.

This is a picture of the imaging from my second-to-last procedure, when the first drain was "installed." They got it in and were able to inject dye to illuminate the ducts (the darkened, tree root looking things).
There should be so many more, especially on the left...

That is one mass of sharp, irritating to my skin blue stitches. And one big drain! I flush it with saline like this once or twice a day.

Just for the record, heading into another twelve hour surgery is not what makes me take so many deep breaths, and need time to process these developments, and soak in the Word and worship to be fueled up for those inevitable Mind Monsters. It's not that that scares me. This time I would be heading into a transplant not as a light-hearted teenager, but as a wife and mom to a toddler. I want to be here for them. Always. And a waiting list of approximately, at all times, 17,000 people needing a new liver, versus only the 6,000 per year that receive one... well, do the math. (Source)
Of course this is a fear that I don't dive in too deep to, because my heart and that Holy Spirit voice thankfully always tug me back to earth and say, "but Emily, BUT GOD. This may look daunting, BUT GOD. He can do anything, and He wouldn't have brought you this far to leave you or let you be done living now."

So anyway, that's the biggest news I had. My days are so full of joy and memory making, it's not derailed me too much, just mostly made me live all the more intentionally to soak up the everyday moments. Hobby Lobby had this painted sign I wanted to get for my living room at one time (coincidentally, it's not there anymore). It said, "There is always always ALWAYS something to be thankful for." How true that is!

I had a glorious nap last week, later than usual, and woke up to a gorgeous sunset...

A couple Sundays ago, we took a short drive to the Peninsula and found a secret children's garden. Dreamy looking mature trees, and little fairy gardens someone's made. Miss V was on the hunt for Peter Rabbit :)

The Secret Garden

Momma and Miss V made it to Costco all by ourselves the other day! What a fun time and a big accomplishment :)

I experienced a huge glimmer of hopeful progress the other day. My eyes became more and more white throughout the day, and by evening they were whiter than they'd been since Christmas! Unfortunately back to very golden the next day, but that event sure was encouraging. Looking for more of those in days and weeks to come!

We always enjoy the beautiful garden at the clinic. What beautiful flowers and trees we get to appreciate because someone works very hard at planting and tending.

I've been marveling at God's grace and sustaining me to be able to keep up with Miss V around the house, and I'm on a baking roll this week as well! V and I made grain-free "puffy oven pancakes" on Monday, and I whipped up a batch of sugar cookie dough from a gluten free Hodgson Mills mix. We never got to make Christmas cookies.... or football/Superbowl cookies... Valentine cookies... or shamrock cookies... or Easter cookies. Despite me getting everything including the appropriate cookie cutters out on the counter, every time I've been too tired. Well we are going to make our Easter/spring cookies, no such thing as too late :)
Late last night I couldn't sleep and made coconut flour blueberry scones. (Yep we're still very much gluten free around here. We added back grains last year when I needed to put on weight desperately. Phasing them out again little by little, because all three of us do better without.)
Then today I made a rhubarb crisp, grain free, vegan, refined sugar free, with local rhubarb from a farm down the road. Delish! I have missed baking very much, and can't believe how much I've been able to do including cleaning up afterward, doing multiple loads of dishes and laundry each day, hanging with Miss V and watching a movie a day and doing crafts with her. Every day I have strength and energy to keep up and make life fun in my home, I am SO thrilled and grateful!

Speaking of energy levels and miracles...
Another hurdle I'm in process of jumping is some wonky blood and bleeding issues. My exhaustion level didn't fade enough once I capped my drain last week, and I had a hunch about not just electrolytes but also my blood counts. Sure enough, my doctor reported back to me that my Hemoglobin was at 8 and Hematocrit 26. My Prothrombin time and INR (both indicators of the time it takes for your blood to clot) are double what they should be. I actually had to wait a few hours while I was infused with three units of Plasma before my procedure earlier this month, because my numbers were past their cut off for a safe procedure.
It has to do with the challenges my liver is fighting through, and the state of sickness it is in; PT and INR rise. Not much you can do, I am now taking Vitamin K but really I just need healing! I'm really starting to feel it and noticing that it's not really improving.
Oh more blood drama! It's been almost a full year since my intense war against Autoimmune Thrombocytopenia ended and [I believe] God healed me and put that nasty disease into remission forever! But I'll never forget those trips to the ER hanging on as I was on the verge of passing out and my skin was so white and cold.
I got my blood drawn yesterday evening to check Hemoglobin, Hematocrit, and to do a Type and cross for a blood transfusion. It's inevitable that I'll need one within a week (actually, it's been a week since my labs were drawn last and my doctor informed me of the electrolyte and blood situation and my need for a transfusion.) but the Infusion Center where they do blood is so booked up, I can't get in until Monday. I do NOT want to end up in a critical situation ever again due to low red blood cells, so I figured checking today would be a good idea, we'll see where my numbers are at (knowing I'm still having bleeding issues - dumb gut ulcers!) and if needed, the team will go ahead and put me in the hospital for a short stay to receive a blood transfusion that way. I'd much rather give up a weekend day doing that then have to rush to the ER late Sunday night because the numbers got out of control.
Please say a prayer for clear results and a great plan of action. And as always, a blood match for me that's clean and healthy!

I think that is the summary of the major things going on. It's been a busy month - anyone else feel like April just FLEW by? But I am excited for May; it's my "happy month." :)
I will celebrate thirteen years since my liver transplant on Cinco de Mayo the 5th, my third Mother's Day on the 10th, and my 30th birthday at the end of the month! It's a good life. Never let go of your vision or your fight.

And don't take life or yourself too seriously! ;)

Right?? :)
Interesting to me, my hair is getting back to its curly, wavy state. It was like this before my liver transplant in high school, and changed to being mostly straight when I was pregnant with Miss V. Now, the curls returneth!

Here is a group of statements I wrote out to myself last week when things were feeling overwhelming, lonely and anxious. A declaration:

"I choose to live.
I choose to keep moving.
I choose to take one day at a time.
I choose to not quit.
I choose to trust Jesus.
I choose to believe the enduring, unfailing promises of God.
I choose to look high and low, far and wide, to find any joy I can find in the most difficult of days.
I choose to hope.
I choose to stay in the fight.
I choose to be fully present in the moments for myself, my daughter, and my husband.
I choose to thank God in every moment.
I choose life.
I choose joy."


And here is a beautiful prayer I discovered; I've heard and read parts of it before, but wanted to see it in its entirety. I want to print it out and carry it in my purse with me to remind me of these truths.

St Patrick's Breastplate

Christ be with me, Christ within me
Christ behind me, Christ before me
Christ beside me, Christ to win me
Christ to comfort me and restore me.
Christ beneath me, Christ above me
Christ in quiet, Christ in danger
Christ in hearts of all that love me
Christ in mouth of friend or stranger.

(390-461 A.D.)

What's Happening

Ok, so I am about a month overdue for a major update on everything that's been going on with me. Our one "real" computer in the house, a little netbook, hasn't had a working screen in almost two years, so when I need to sit down and really blog, I have to make the time to turn it on, plug in the special cord that Hubs rigged up to connect the netbook to the TV, and get a chair over to the spot, hunker down and start typing. And then more recently our little netbook does this really charming thing of shutting off, completely randomly, either while paying a bill, writing a blog post, or worst of all - livestreaming church! Oh well, we make do. I am going to type as much as I can while old Trusty (or Not-so-Trusty) is running, and see how far I get :)

So. I have been out of the hospital for about six weeks, I think, and it has been AMAZING! The weather in Seattle has been out of this world beautiful, and I've been able to catch up on things at home that have been neglected for the past ten months as I was just struggling to stay alive and functioning in the very basic human mode. The other day I finally (as in, a year later) organized the big cabinet we put on the bathroom wall, cleaned it out of everything that had piled up over the year - wax ring for installing a toilet, anyone? - and got all of our bath towels put in the there.

Wow, that felt good to finally accomplish! When everything unnecessary and unused is OUT of a space, and it just has what we use and need, I feel so much better. So yay me, for slowly but surely working on things and getting to enjoy being a wife, mom, and domestic diva a bit again :)

Another accomplishment was finally putting tile backsplashes up in our kitchen, oh, three years after the remodel too place? Again, what a feeling of accomplishment, and security that no water from the sink or grease from the stove will be splashing onto the drywall (which is, yes, still unpainted) and causing issues down the road). I'm so thankful for the great deal on tile that we got, it was just what we wanted and works great in the room. We repurposed shelving from another area in the house, and I've got my open shelving wall and tile. It's looking pretty cute!

One bummer we found out is that there is mold under the wall surfaces in our coat closet, and so alas, ANOTHER remodel looms. It will be the last one, it is the closet in our living room, which is our one remaining room with old plaster walls and no insulation. But finding the time and resources to do that, in an already busy and balancing act of life, is a challenge. Good thing Hubs is always up for a challenge - by fall, we will get it done I think, and be much healthier and cozier this coming winter! 
In the meantime, I have boxes of my crafts supplies, fabric stash, glassware, birthday party supplies - you name it, sitting in my living room, waiting for a finished closet to be put into. Character building, I say ;)

So, moving on from house to health - here's what's been happening:

Going with the most recent events, I am on Prednisone right now in case of liver rejection.
My LFTs (liver function tests - ALT, AST, Alkaline Phos, Bilirubin) have been elevated pretty consistently for a couple months, actually since switching from Tacrolimus to Cyclosporine as my anti rejection med. My doctor is very calm about it, which I really appreciate and need, and isn't panicking, but started me on Prednisone a couple weeks ago and we are going to recheck my labs tomorrow (Wednesday). If numbers aren't improved, I have to go in for a liver biopsy. They will want to check for rejection, as well as any issues like infections and what not. It occurs to me that after so many blood transfusions this year, they will look for hepatitis as well. It will all work out!
Interestingly enough, the reason they can do a liver biopsy without the risks of bleeding is that...

ITP seems to be in total remission!!! GOD IS GOOD!!! My platelets have been steadily climbing since I left the hospital in mid June, and that has been an absolute encouragement. It is so fantastic to get a call from my hematologist or go online to check my results, and find that the platelet number is higher and higher every time. What a gift after such a crazy year of scary-low critical platelets! Most recenty, last Monday, my platelets were at 149,000. The range they call "normal" is 150,000-400,000, so WOW, I was just one point away :)

In light of the elevated LFTs, I went in for an MRI/MRCP earlier this month. They were checking to make sure I did not have any strictures in my bile ducts, as when you have PSC (Primary Sclerosing Cholangitis) liver disease, those can become a problem, and cause back ups and pain, cholangitis infections, and elevated numbers. I refuse to accept that PSC is back in my new liver, despite what the reports may have shown over the past couple years. I believe God healed me with my transplant, and I am sticking with that. And awesome as He is, God gave us a great report on the MRI! No strictures, and actually improved liver tissue in an area that radiology report eighteen months ago said was looking not so good.
Awesome, right?! :)

Finally, the other health event I had was my annual colonoscopy. Woo, party time! (Haha!) 

colonoscopy prep solution

With all of the colitis problems this year, the major bleeding coming from my colon and just being exacerbated by the ITP low platelets, my gastroenterologist and I came up with a plan to start talking about colon removal. The first step in the plan was to even accept the idea. Talking about a simple tiny biopsy and colonoscopy, let alone complete removel of my colon, is very serious when my platelets were as low as they were (8-10,000, consistently). It is much more than an issue of surgery, as there's talk of hemorrhage risk, and also they said I must do the surgery at a liver transplant center, because there is a risk of liver failure when doing abdominal surgery when liver scarring or cirrhosis is evident (so 'they' say). As you can imagine, becoming comfortable even talking about a decision that major was a big deal. That alone took me a few weeks.
Then I started doing research, asking questions, and had an interview with my doc and asked all sorts of things about colectomy, ostomy bags, and so on. If I am not completely healed of colitis, a surgery and ostomy looks like it is in my future. That was another big mental thing to get a grasp of, and took a bit of time.

Snuggles with my girl while waiting for my doctor

My smarty girl, checking me out after she saw my doctor do the same thing :)

The most recent step was to have my colonoscopy, so they have a current picture of what my guts look like to give to the surgeon if we continue going down that surgery road. This wasn't even an option for most of the year, because of such low platelets. But my platelets started improving and we scheduled the procedure, and the day before I went in to get my numbers checked. They were planning to give me a platelet infusion during the procedure, to prevent any bleeding issues, and only take a couple biopsies. Well, my platelets came back so good, I didn't need any infusion and they got to take more biopsies, which is always good for monitoring sake. Woohoo!

Kind of grossing me out, I had a number of polyps in my gut. I've never had that before, even having colitis for nearly 20 years. But they were all biopsied, along with a bunch of other spots of gut tissue - and everything came back clear, no malignancies, no dysplasia! Yeah Jesus! :)
Also, the report, similar to my Liver MRI, came back showing that my guts look better than the last scan, in two areas. There is definitely colitis activity and my transverse (across the top of my abdomen) colon looked worse, but the ascending and descending colon areas are improved. So, hurray for that!

Thankfully, things have been pretty quiet with colitis and ITP these past six weeks. I am so grateful for that! Not having to worry about bleeding and transfusions and going back to Critical Care or riding in an ambulance... phew! Thank You Jesus!
What a gift it has been to be at home, at church, and around our city with my sweet family and incredible friends, just enjoying the summer weather and all that is good in my life. WHAT a gift.

We may live in the 'hood, but our summer sunset views are million dollar :)

Pray with me in agreement for a great report on my LFTs and platelets tomorrow! Once my numbers are stabilized, I get to taper off the Prednisone, which is always a good thing. Last night my knees and belly were super swollen from the side effects. Pred is a great drug in the short term, but so many icky side effects when you have to be on it for a while. Speaking of which, is why I am up before dawn today. (Insomnia is another lovely side effect.) Thankfully in the summer, being up this early, it gets light out early, and I have always loved watching the sun come up. One reason I really loved being on crew in college :)

Today is a new day, full of new gifts, opportunities, and potential! Seize the day - look UP and around at all you have been given - life is good! Xo!

"So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that’s where the action is. See things from his perspective."
-Colossians 3, MSG

Crazy Week, part two

I ended up being in the hospital for five days, I think. I got to go home finally on Saturday afternoon. The first 24 hours in the ER and CCU went by so fast, when I was trying to remember what happened there and how long it was, it was a blur. I'm sure that has to do with the whole "hemorrhagic shock" thing. Medscape says, "Hemorrhagic shock is a condition of reduced tissue perfusion, resulting in the inadequate delivery of oxygen and nutrients that are necessary for cellular function. Whenever cellular oxygen demand outweighs supply, both the cell and the organism are in a state of shock."

I really didn't take the CCU doctor very seriously, I thought she was overreacting calling it that, but once I was up walking around, and felt the complete muscle weakness in my quads and calves, I realized that my body really had to pull strength from somewhere to get through those intense hours. It was tough just walking down the hallway one time; my legs really lost their strength over night.
Once I was discharged and trying to get back to anything resembling normal life at home, that was a rude awakening! I realized, okay, my body really took a hit in those couple hours that my blood count got so low. How I got to that point, by the way, is the same thing that's been happening repeatedly in the past six months or so. An episode of bleeding that gets out of control, my body can't keep up with the blood loss, and things get ugly. (ITP / critically low platelets + Ulcerative Colitis / gut infection causing GI bleeding = no clotting happening = bad scenario)
So after all that, I realized the doctors weren't overreacting, they were really concerned, and took good care of me. This was the worst, most serious event we've had happen, and I am lucky to be here ... again ... always.

On Wednesday, I believe it was (my first full day out of the CCU), I had a great friend come to the hospital to visit me. A dose of friendly faces from the "outside world," bringing faith, smiles, genuine care and help to you when you're stuck in the hospital -especially when you have no clear timeline of getting out or solution to prevent this from happening again- that is such a gift! Thank you to my sweet friends and family for coming alongside Hubs and I through this, both this one event and throughout the past eight months. It's definitely been the hardest year of our life together since we've been married, and probably the hardest year for each of us individually in our lifetimes. The people who've stuck by us and trudged through this season with us - you are truly priceless!

Wednesday evening, just when I was starting to get concerned that I hadn't seen my hematologist and wondering if he would be coming by, because we had some things to discuss - he popped into my room like an instant answer to prayer! We had a great chat about putting some notes in my chart for any staff to be able to access, noting that we have a plan in place for when I have to come to the hospital, and basically saying to all the doctors just meeting me and seeing my lab numbers, "Do not freak out! This is normal for her and we have a plan!" It was funny to hear my doctor admit, "When I first met you and saw your numbers, I freaked out! But now I'm used to it." I have a great care team and I appreciate when we can laugh about things together :)

We also set up a plan to go by when I went home. It is basically, to go to the lab twice a week to monitor my CBC (red blood cells - hematocrit and hemoglobin, and platelets, being the most important numbers to watch), and call with any serious bleeding, and if a transfusion is needed, the nurse will triage me to either an outpatient infusion center, or an overnight direct admit to the hospital for fluids and blood if needed.
It felt really good to set up a plan, just because everything has been so unpredictable and crazy the past few months, at least we now have a set idea of what to do when symptoms come up. I realized I have to do a better job of facing the reality of a bad bleeding episode too, and go in for labs and let all of my doctors know, instead of hoping it will clear up on its own.

The rest of the week was mostly a LOT of blood draws, a few more units of blood transfused, magnesium IVs, IV steroids, and starting an antibiotic for aNOTHer infection I got from being in the hospital. Yuck! Thursday night (early morning) I got 90 minutes of sleep, the rest of the night I was awake and in serious pain and going back and forth to the bathroom far too many times than anyone should ever have to! Thankfully that improved slowly over the next few days, and though I could have gone home sooner if I had not had that infection come up, it was good to stay in the hospital until everything was calm and my counts were stable.

I sure miss my Victory when I'm in the hospital. Highlight of the week was definitely her visit!

While I was in the hospital, we also started talking more seriously about something that came up the last time I was there: surgery. Surgery to remove my colon. I'll blog about that next time.

For now I'll wrap this up. I have been to the clinic for three CBC tests since leaving the hospital, and each time my hematocrit and hemoglobin have been good, staying stable above 30! My platelets were 7,000, 8,000, and then most recently, 11,000, which is no where near normal (150,000-400,000) but it's great to see them stable and even increasing a bit.
My guts are staying mostly quiet, and no serious bleeding issues, Praise the Lord!
It has been a true gift to be able to be home with increasing energy and strength for more than one week. I have been able to do things I haven't done in months, maybe even all year! So many things go by the wayside when you're in survival mode, from regular cleaning chores around the house, to taking time to enjoy yourself with a hobby project or outing. And getting to be a hands-on mom again, after so many days and weeks of pain and weakness and needing help to even change diapers, has been the BEST!

So that's part two of my crazy week. Thankfully, since I've been home things have gone from crazy to calm, and are going well! Quiet and stable is much preferred to crazy and serious :)

Crazy Week, part one

Exactly seven days ago, I was spending the night in the Critical Care Unit. Tuesday morning my husband had to rush me to the Emergency Room, where they declared I was in hemorrhagic shock. My blood pressure was low, heart rate high, skin white, and body struggling. Hubs had to carry me to the car and into the ER wheelchair.

After arriving to the ER, they got me right in, and all available staff came to assess me, put in two IVs simultaneously, ran an EKG, and a tech stood by ready next to the code cart.
Here I am wrapped in blankets - I was so cold:

I was put into the CCU because they could not find a match blood donation to give me right away, and wanted to monitor my vital signs closely in the meantime. It ended up taking five or six hours for the blood to arrive. I received a platelet infusion while waiting for the blood, but it didn't boost my platelet level. (Same as the time in December when that was tried.) This darn ITP is a nasty thing.

You know what they don't have in the CCU rooms? Toilets. Bathrooms. In case you love to use a classy contraption called the bedside commode, it's the place for you!

God bless my husband for his nurseliness. The things he puts up with for me...

After my transfusion of two units, I had a little improvement. It was slight, just sitting up successfully and better vitals, but progress. Hubs said my skin also had some color back to it.

The next morning, my doctors explained the plan was to transition me to a medical surgical floor. We waited most of the day for that, and in the meantime I was able to start walking around. The hospital has a rooftop garden for patients right down the CCU hall, so we went out there to enjoy the sun.

What a testimony to the power of prayer! I looked so much better and felt better then. I stayed outside almost an hour sitting and drinking water and sun basking. Then we went in, ate lunch, and it was time to go upstairs.

My room was on the top floor of the hospital, possibly the best room and view in the whole place! It also happened to be on the floor where a friend of mine is a nurse! I felt like God gave us favor with those circumstances, they were not a coincidence but Him, showing us He was near even in those little things.

The view from my hospital window:

I got settled in, the hospital doctors came to see me, I got to eat dinner, and then it was night. They started me on high doses of IV methylprednisone, and checked my blood count again.

To be continued...

turn Weak into Strong

Yeah, I kinda dropped out of the Blog Every Day in May challenge. I'm okay with it. I've been been having a tough week, a colitis flare and my platelets are being stubbornly low. I'm going to win this battle, I keep saying it and it will happen eventually.

So I just wanted to check in and let you all know I'm still here, just not all about blogging at the moment. I'm still reflecting on an incredible Oxygen womens conference last week, recovering from a full weekend, and marvelling at the daily blessings that come from being a wife and a mom to two incredible people I have the joy of calling my family.

I do want to share share one thought that's been trudging around my head all day today. It's the second part of Joel 3:10 b, "Let the weak say I am strong."
This verse dropped into my path yesterday when I was doing some reading, and it is so timelyfor me. In tbe times that my blood count is dropping, it's difficult to watch and feel the effects in my body. I have learned recently that I can declare strength from God, literally speak it with my mouth, and it makes a difference. It makes my body respond, because there is life and hope being spoken. In the struggles of life, including physical, we are not powerless!

Read the Message translation: "Let the weak one throw out his [her] chest and say, "I'm tough, I'm a fighter!"

That's what I'll be doing this weekend, determined to bounce back from this setback without a hospital visit!

A moment in my day (BEDIM: Day 9)

Here we are, Day 9, and I'm still in the game. Go, me! It feels good to be able to keep up with a commitment. Haven't had that opportunity much lately!

Today is about sharing a moment in my day.

And I was about to post this after lunch, explaining how my day is panning out today. But then I promptly fell asleep for four hours. Wow.

So, now I will post. This is my pillow, blue Gatorade, and me. Today my guts are being fussy, blah blah.
I'm so Thankful for Hubs capably taking care of everything so I could/can rest.

Tomorrow's going to be better!!

Hospital Week, mostly in pictures

So last week I had to be admitted to the hospital, and stay for six nights and six days. I am not feeling well today, so all the details I'll get to later. For now I have a few pictures to share.

I half don't want to post this one because of how scary pale I look, but I think it is at least a good representation of how drastic the transformation can be after a blood transfusion (or three)!

On the way to my doctor's appointment, knowing I would probably get admitted to the hospital. I was not feeling so good... It is hard to catch me not smiling, but this was one of those rare times I just couldn't. I. Was. Miserable.

Hanging out in the ER. After we arrived to admitting, the triage nurse called an "all staff" to my room over the intercom. Three nurses were already in there when they wheeled me in. They helped me into a gown and then two nurses worked at the same time putting an IV in each arm. Then they started major fluid infusions.

Thursday, Hubs and I took a brief, slowwww walk down the hall of my unit, and noticed there was a certain odor in the air. I started dreaming of the spring hyacinths I smelled outside the clinic the week before, and how delicious they smelled, and wished I had some to put by my bedside.

Not two hours later, a flower arrangement showed up at my room.

They were beautiful and smelled just delightful - particularly the hyacinths. :)

Thank you my dear Sara friend.

Four days and six blood units later...

...my beautiful and faithful friends Traci and Sarah (who live five hours away by car) visited me! They happened to be in town for an event and came by the hospital on their way home. What a BLESSING!

Sunday was a good day. It was sunny outside and so bright in my room because of that. My usually serious and occasionally outright grumpy doctor came by and was chipper and even smiled! I had major relief from the pain in my legs that kept bothering me. A visit from some incredible church family, and my baby girl came to see me!

Here I am Sunday night...

...taking my last dose of Tacrolimus!

I am now taking Cyclosporine for transplant anti-rejection purposes instead. It may put my UC into remission too, according to some new research. Here's hoping!!!

It was hard to be away from my sweet girl and my home for a whole week, under the circumstances. I am praying that the tests and changes we made because of the long stay will be fruitful continually in the next weeks and months. I have two new doctors, and they are amazing, and I was finally able to catch up with my liver doctor while there as well. I have a great team working together to help me the best they can.

If you feel led, pray for my doctors, that they would hear and receive treasures of wisdom and knowledge from above, ideas and answers they never thought of before, for great treatment and even getting me completely well again!

So I have been home since Tuesday night. It has not been an easy transition, and I am not feeling too well, which has been so frustrating. Dealing with pain almost 24/7 is so exhausting, and looking into the mirror seeing a pale, exhausted girl staring back is discouraging. I am so thankful I know how to pinpoint those negative thoughts in my mind and boot them out. It is a constant battle in these shoes, but I am determined to win!

I will try to post again before too much time passes, to update on everything. I have five doctor appointments in four days this week. FIVE! Not looking forward to that, especially because one is going to involve some really serious "real talk" about my options and what may need to happen. But that's really nothing new for me. 

God before me, Jesus within me, Holy Spirit surrounding me, I can do it!

thanks for checking in on me. :)

Update: A New Autoimmune Disease

My platelet count was re-checked today, and they were at 8,000. For a refresher, last Monday they were 10,000 and Friday they were 18,000. Mistakenly, we thought that the 18,000 mark was a sign that they had "doubled," and were on the rise. Turns out that that is also a terribly low number, and once you're that low they bounce around in the neighborhood of eight to twenty thousand, depending on the hour of the day they draw the lab. (Wish I would've known that last Friday, ha!)

So after speaking with my doc, the good news to share is that still and again, my bone marrow looks very healthy (woohoo!). There are no problems and no issues with it, my body is making it just like it should, and that is all well and dandy. The bad news is that this low platelet thing is not because of anything else (bone marrow issue, lingering virus), but a new autoimmune disease: ITP. Idiopathic or Immune Thrombocytopenic Purpura. As my doc explained, it used to be called "idiopathic," as in, "We don't know the cause." Nowadays it is considered an autoimmune disease - the body attacking itself. When I asked if it was indeed ITP that I have, and he explained that history, I laughed and said, "Well at least they blame it on the body now, instead of saying, 'it's all in your head!'" That's good I guess :)

I explained that possibility in my last post. Not much more to say about it, other than I am going to investigate around my Paleo sphere and see if anyone out there doing Paleo AIP (Autoimmune Protocol) has this too!

I will get a call from the infusion center tomorrow, about starting the treatment for this: a weekly shot of Romiplostim. It will stimulate my body to make more platelets, so that even with my spleen destroying a bunch through confusion in my immune system, there will be enough platelets to have a healthy, clotting blood and not at risk for hemorrhaging and such. That's a good thing!
They would not normally proceed to this step right away, because the traditional treatment is to remove the spleen. But they do not like to do that in people with liver disease (such as myself). The spleen's function is so important, especially with a compromised liver, so I appreciate and understand that. I have been such a pincushion lately, I am grateful I do not have to undergo a major surgery right now :)

I'm certainly not looking forward to these shots, and haven't even begun to consider how we'll afford the bills - ah, patented Rx drugs, how expensive you are... and just when Hubs and I are starting to plan our first vacation ever.
But I am looking at this as a temporary set back. It is so important to keep that mindset in the tough times of life - battles are temporary, rough patches are just seasons. We must never forget that we have the victory through Christ, and God always has our best in mind. This is just a chapter; this is not the end of my story!

Jesus has a purpose for me, and for this chapter - just like all the chapters each one of us walks through in life.


So many of you are praying and believing with me - thank you for that! Here is the most specific thing you cam agree with me on: that my immune system will be healed, and begin to function the perfect way it was created to function - fighting off the bad, and leaving my body (the good!) alone! It is amazing that the confusion and "misfiring" in my immune system is the root of ALL (yep - ALL!) my health issues. My immune system set up attack on my colon (ulcerative colitis), my bile ducts in my liver (primary sclerosing cholangitis), my joints (polyenthesitis), food and other things in my blood (leaky gut, allergies, intolerances, asthma). When my immune system in healthy and whole again, I will be a new woman!

Thank You God for abundant life, no matter what the situation looks like - John 10:10.
Thank You for giving me the power to choose my response, and the grace to choose JOY today  :)


And thank you to my beautiful friend Emily, for reminding me of this truth:

So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever.
-2 Corinthians 4:17

No Lymphoma!

Praise Jesus, I do NOT have lymphoma!!!

Hubs and I went to my post-op appointment last Wednesday, and (I just love this doctor!) the first thing that happened when the doctor opened the door was to say, "Well, it's not lymphoma. I just got off the phone with pathology." Way to lead with the good news, Mister! I so appreciated that!

After my appointment, we went home, picked up Victory and my mom, and went out to dinner. One of the best Mexican restaurants in the area has recently started cooking some of their things gluten-free, taking measures to prevent cross contamination and such. (What a nice thing, by the way!) Before my appointment, I'd said, "Let's go to Azteca after we get the good news!" I was doing all I could to walk out the confidence I felt in my heart, and one way was to plan ahead a celebration in anticipation of the great report I was about to get!

Each time I walk through a challenge, a fight of life you could call it, I learn more about who God is and what He wants to be known for in our lives - faithful, ever-present, trustworthy, unconditionally loving, always caring, always having our best in mind... I could go on and on! I walked through this challenge with the most peace and confidence I've ever had through a battle, and God was there on the other side with a great outcome. However, I think it can be a battle in itself to ignore that little voice in the back of our minds that says, "Why are you so confident? What if it turns out to be bad news, and you've been telling everyone you can that you are healthy and God has this covered? What if you look like a fool?" That is really a self-centered train of thought, and if I'm thinking that way, it reveals that I've taken my eyes off of my faithful Father and I'm looking at myself and the people around me for answers.

I love that I was counting on a great report from my great God, and He had the situation covered the whole time, and we were able to go out and enjoy a nice dinner and bask in the relief and peace of knowing I was NOT about to start a crazy barrage of testing, appointments, and treatments. Thank You Jesus!

In case you are wondering why my neck did have an enlarged lymph node, we are still waiting for the full report, but remember those cultures for bacteria and fungus that they started after my surgery (I briefly wrote about it in this post)? At the time of my appointment, only some of those tests had come back (it can take several weeks for anything to grow). Two bacteria had shown up so far. And because I'm allergic to the antibiotic that they usually treat this bacteria with, I am one of the lucky ones (ha) and now have to see an Infectious Disease specialist on Friday to go over the rest of the results and get a specific treatment in place appropriate for someone with an allergy and also immune-suppressed because of a transplant.
My ENT doctor said we are getting oddly close to a scenario out of the TV show "House," because they have no idea why a bacteria would have settled in my neck, and still no clue how I got an infection in the first place. Craziness!

So, it's off to the Infectious Disease department of the hospital on Friday. Hubs and I are going to turn it into a date afternoon, because we'll be going up to Seattle for my appointment. It will be interesting to meet with an ID doctor; I've never been to one before (that's a good thing I suppose!). The other day I was thinking, I should get a checklist of all the different medical specialists and check off which ones I've ever seen  -  I think it would be a good chunk of the list. At least I can't say my life has been boring :)
Here's hoping the infection is mild and taken care of even before I start antibiotics! And also that the antibiotics don't send me into a major UC flare by killing off my good gut bugs! (Gotta stock up on probiotics, that reminds me!)

That's all for now. I have been daydreaming about some recipes to share on the blog but no photos or writeups yet. Stay tuned as it's slowly (stubbornly) changing to fall around here, and I know I'm going to be inspired by the apples and pumpkins all around... Yum!

Jumping Off the Wagon

You guys, I've jumped off the wagon for a few days. No, not by eating gluten, dairy, or even soy or eggs - I can't ever eat those things. Still no garlic or citrus or pineapple - that would not be good. Nothing I know will outright cause allergic reactions. I went to the store and bought a basket full of treats and snacks, and some of them are very definitely NOT Paleo. I needed some help getting me through this hungry/exhausted/frustrated/completely baffled week. Here's what I got:

Yes there are some grains in there (rice). And some outright un-Paleo, unhealthy, completely junk-filled Swedish fish. But the rest is not half bad right?  :)

See? I'm not perfect in any respect, and eating Paleo full time while trying to take care of your family and home, breastfeeding a nine-month-old, dealing with chronic illness daily "stuff," and freakish allergic reactions - well it just doesn't always work out.

Do you know how hard it is to find grain-free snacks that do not contain garlic? I would be all over some beef jerky, but it's got garlic. I ran into garlic or the vague "spices" term listed on so many ingredient labels. What is the deal with that?

Somehow, I got "glutened" or ingested some other allergen the other day. I am still completely baffled as to what it was. I know something happened because I had the worst reaction I've ever had - brain fog, complete and total exhaustion physically, emotional ups and downs, itchy, sinus stuffiness, joint pains, headache... Oh was it HORRIBLE! Hubs and I have been calling and looking up the manufacturer information for the foods we ate and still haven't come across a clue. (By the way, Kraft customer service is VERY nice! We called them about some uncured Oscar Mayer bacon -nope, it wasn't that-, and Hubs was on the phone for fifteen minutes including speaking with an executive! Go Kraft, you really are trying hard to be accommodating and sensitive to those with food restrictions!)

But it's been a tough couple of days. Whatever this was it threw my guts into a flare up and I have felt more than ever before that I am not absorbing anything from what I've been eating. Just getting up and walking across our tiny house feels like dragging a cart full of boulders behind me. I don't know how much it affects my energy level when in a flare like that, but I am still breastfeeding as well and I was dreading feeding Victory each time, because of how exhausted I felt. And that's not something I want to be feeling!

So.

I jumped off the wagon. I bought some food I can grab right out of the cupboard. And a few treats to boot. And I'm only sharing this so you see that I too, am human. I am learning that, particularly with Autoimmune disease and following the Paleo AIP, it doesn't matter as much that you're eating "perfectly," as much as it matters that you are dealing with stress and not putting unhealthy pressure on yourself. So this is my little vacation off the perfect Paleo highway, and I'll enjoy it, and get back to grain-free, crap-sugar-free soon.
I'm okay with that :)

Do you ever take a break from something in your life? "Jump off a wagon" that you intentionally were on to pursue health?
Sometimes it's more important to give ourselves grace and a little break, as long as we're still keeping health in mind. Pursuing health, especially when you have autoimmune disease, is a life-long journey, full of ups and downs and adjustments. What is important is to keep moving forward and brush off the guilt and tough moments.

"Diet" Labels, What's Up with Me, and the Bottom Line Goal: Health!

Truth be told, the longer I follow this "Paleo" way of eating, the more I think about my blog, recipes, and life being stuck with a label. And that bugs me. I don't want to be labelled or stuck in a box - by myself or by anyone else. As my profile says, I am on a journey to reclaim my health by eating the foods I'm truly meant to eat. Whatever label popular culture may choose for how I eat, my simple aim remains: to cook and eat real, nourishing, healing food. I think the tendency to need to label everything is a sign of our society's food insecurities and the confusion surrounding what is truly good for us. For instance, as children, most of my generation was taught, "MILK- It does a body good," and these days whole wheat breads and pastas are touted as full of nutritious wonders and the key to a flat belly.
But I bet you know at least one person in your world who has discovered that they are gluten intolerant, or feeling better not eating dairy, or encountered some other food lightbulb experience, and this puts the FDA guidelines - that tendency to push a "one size fits all" diet on every American - to suspicion.


Personally, I tend to go to extremes with things, specifically when I hear about diets that have 'cured' people of their autoimmune disease. I get so excited! About the possibility of being well without medications, and empowered by the information and personal stories of recovery. But (after living and learning a bit) I recognize that extremism is not a healthy way of living. For one thing, it puts the entire burden of failure or success solely on your own shoulders when you are your own coach and critic. Especially with dietary changes, I am learning that everything is not black and white. I am learning that we have to listen to our bodies and consider that we each have our own unique sets of genetic material wired just so, to make us who we are. So what works for your BFF/trainer/blogging idol may not work for you. And... that is okay.

Wouldn't it be easier if I could just follow a black and white plan straight from the pages of a book? Heck yes, and I daily wish that would work for me! (For the record, I'd choose this book or this book.) I believe that food changes alone work for many people, to bring about needed weight loss, relief of joint pain, slow aging, recover energy, and so on. There are testimonies like that all over the net. But throw the factors of a leaky gut, autoimmune disease, food intolerances and chronically damaged and inflamed tissue into the mix (yeah, that's me), and it becomes quite a large Clydesdale horse of a different color...


I am very passionate about making dietary changes before turning to drug treatments that have potential adverse consequences. So when I see someone struggling with disease, I usually think, "I wonder if they've tried changing their diet... if they've tried 'going Paleo'... if they've tried..." This is because changing my own diet has helped me - specifically eliminating gluten, dairy, eggs and soy because my body is intolerant to them, and recently grains and legumes as well, because I have learned by trial and error that my guts do immensely better without them. Once I read about the damage that grains, legumes and dairy do to your guts, it was easy for me to let them go. This is the main reason our family has "gone Paleo." The two special people I live with have great health, and we want it to stay that way!  :)


On the other end of that, however, I have still not reclaimed my health. I am still waiting to find my own personal "perfect diet." I would like to say that kicking the SAD (Standard American Diet) to the curb has cured my Ulcerative Colitis and other junk. But it has not [yet...?]. In fact, this week has been so tough that I'm considering calling my GI doc and giving Prednisone another try if he thinks it will help. Because feeling like garbage is no way to live, and there are times when modern medicine needs to embraced as a gift of modern life, just like cell phones and the internet. [About the internet: Where would all of us blogging about special diets and diseases be without it?! Much more isolated and hopeless, I propose.] I really like my new GI doctor and it wouldn't be a negative experience to go see him. I'm trying to teach myself that even if I don't want to go on new meds, if something changes in my condition I should keep my doctors filled in on how I'm doing and at least see what my options are.


I'm also re-reading Breaking the Vicious Cycle and trying to muster the drive to re-try the Specific Carbohydrate Diet (SCD). I tried it  two years ago, and it helped to some degree. I stopped it before I knew that I was intolerant to dairy and eggs, so odds are it will go much better this time around, knowing that! I don't ever choose drugs first off; I always try to find another route.

Speaking of helping ourselves by making lifestyle and dietary changes, I came across this piece today, by Kurt Harris MD. I highly suggest you read it! I love his gentle but encouraging suggestion for his twelve steps: "Go as far down the list as you can in whatever time frame you can manage. The further along the list you stop, the healthier you are likely to be. Earlier steps, in my clinical experience, will give more bang for the buck."
Personally I am working on the very first step - SLEEP. Easier said than done for anyone, whether you've got a new baby at home or just love a busy life or get stuck on your to-do list so much that sleep takes a back seat!


If you've read this far without moving on to something else, thank you! I'll wrap it up. So all the aforementioned rambling to say, I don't want to hang onto a Paleo label at the expense of reaching someone with the potential of real, nutritious food. I don't want to come across as 'another diet extremist' and scare people off. I want to keep blogging because I hope - like so many blogs I've come across in my journey - that my sharing is encouraging and helping someone out there.
But just know, whoever you are my readers, that when I say "I love eating Paleo"  it's not to belong to some superior food-obsessed clique.  I think that the heart of the Paleo/Primal/Ancestral/Nourishing Traditions food movement is to embrace life at its fullest by embracing the foods that God put on the earth and meant for us to eat. Real, whole, unprocessed, unrefined, colorful, rich, nourishing, hope-filled foods.
On that note, I am going to keep my "Paleo" label for recipes because it simplifies things for my own organization. I know that when I've labelled a recipe "Paleo," it does not have gluten, grains, dairy, casein, soy... the big ones. But it is not an exclusive or inclusive label, because there are several interpretations of what constitutes "Paleo."

Six Month BFing Milestone

This post isn't particularly related to food. Well, not adult food...

Yesterday my family reached a special milestone. Yesterday my baby girl turned six months old, and with the celebration of her life and health thus far, we also recognized six months of exclusive breastfeeding.
We did it! We made it to six months! It feels amazing to come this far and look at my daughter and see all the growing she's done, and her adorable chub and rolls, and know that it is from the milk that I have been able to give her!

I am thrilled to be a post liver transplant patient that pushed past the assumption that I couldn't breastfeed because of my anti-rejection meds. I did the research and found that it is a false assumption! For more info on that, read my post Medications & Breastfeeding. Also, check out the LactMed Drug & Lactation Database where you can look up your medications for any contraindications with nursing.

I believe that a key part of our success in breastfeeding has been my attitude about it. I was proactive during my pregnancy, I educated myself, committed to it 110%, surrounded myself with supportive people, and came up with a few back up plans. A healthy dose of prayer went toward this subject during my pregnancy, as well!

If you are a transplant patient or UC/IBD/autoimmune disease gal like me, or simply interested in nursing your baby, please feel free to ask about my experience. I'd love to share and help you any way I can with my (admittedly limited, yet so far successful) experience. As a woman who was embarrassed by seeing mothers nursing in public just a year ago, and being an adopted kiddo that never was breastfed myself, I love that breastfeeding is now one of my biggest passions!  :)

I thought I'd share a few resources that have helped me thus far, and then a list of my favorite nursing accessories:

Great Resources

Kelly Mom - This website is AMAZING for answering questions, looking for specific information, learning about new stages in breastfeeding, and so much more. We looked up a few issues in the first few days at home, and found reassurance and answers.

The Ultimate Breastfeeding Book of Answers - I found this at the used book store, and if a bit extreme at times, it is a great source of information to read during your pregnancy. It prepares you well. I felt it wasn't much use to me after our initial stage of learning, because after the basics it moves into covering complications and challenges which didn't apply to us. I also learned some of the material in our breastfeeding class (which I highly recommend taking as another resource!).

LactMed - As I mentioned above, it is a great resource for looking up your medications. If you have to go in for any medical procedures while you're nursing, find out what they plan to give you for anesthesia or pain, and look it up ahead of time. I had to do this a few weeks ago. I learned that I would need to "pump and dump" until the med cleared from my system, so I saved milk for bottles ahead of time

Some of my favorite breastfeeding accessories:

Avent breast pumps - I'm convinced these are the best designed and easiest to clean (and most sanitary!) breast pumps out there. Bonus: They are more affordable than the brands often suggested by hospitals and baby registry consultants. When my milk came in just 24 hours after I had Baby V, my post partum nurse suggested (several times) that we pick up the manual Avent pump on our way home from the hospital. I was fortunate to have the use of my good friend's Avent Double Electric pump for several months, and it was invaluable with my abundant supply. Thanks to this pump I had a rotating month to two month's supply in my freezer for the first three months, and a lot better (drier) sleep at night! Now I own the Avent Manual single pump, and it works great. I used it recently on a road trip and it worked great - super compact and portable with the insulated carrying bag. I highly recommend either one of those pumps to all my mommy friends.

The First Years Breastflow bottles - These bottles were suggested by the lactation educator that taught our breastfeeding class, because of their unique design much closer to actual breastfeeding than other bottles. It makes Baby work harder at getting the milk, more like the real thing, so it reduces the chance of "nipple confusion" and similar problems. We introduced an occasional bottle at six weeks with one of these, and had no problems. We moved up to the Stage 2 nipple after a few months, and that worked well too.

Nursing cover - You can pick these up at Target, Babies R Us, Amazon... But I'm old fashioned and prefer the DIY versions of most things, so I asked my mom to sew me one. My cover is made of fabric I picked out for the nursery and never used. It is a heavier weight and better quality than the covers sold in stores, being it was on the "decorator fabric" aisle at JoAnn's. I love it! With a cover I am more comfortable nursing in public because I feel I am respecting other peoples' space and comfort level (and I stay warmer since it's winter!). If you know sewing, see Simplicity pattern #2165. But even a beginning seamstress with the most basic skills can take on a simple nursing cover. Just sew a big rectangle and tack stitch on a ribbon; it will work!


Now that we've reached the six month milestone, it's time to introduce Victory to solids. Stay tuned for occasional posts about our adventures in baby led solids and homemade Paleo baby food. I am enjoying reading about Baby Led Weaning and we're approaching solids from that perspective. It's going to be fun :)
Any Paleo or BLW/BLS or homemade baby food making moms out there, feel free to give me your pointers and tips...

Paleo for Autoimmune Disease

No new Fast Food Mondays post today friends, sorry! I had a medical procedure last Monday and it took me most of the week to recover. I think my body has reached its biopsy limit for the year; it is starting to protest!

Despite no food sharing today, I did want to share an article. I've been doing some investigating around the web to learn more about the Paleo Autoimmune Protocol (AIP) (go here, scroll down to "Autoimmunity") and I came across a great article at Jo's Health Corner. Entitled "Is The Paleo Diet Beneficial For Autoimmune Diseases?" it explains how and why the Standard American Diet contributes to ill health (wheat, lectins, leaky gut...), and how the Paleo lifestyle can help any person, especially those who suffer from autoimmune disease. The Paleo AIP definitely requires another level of dedication, but it is really helping people who have limited treatment options. How encouraging to read testimonies of people going into remission from Multiple Sclerosis by cooking and eating good food!
Everyone can get something out of this article, I'm sure of it. So give it a read, and if you know someone who could use inspiration or understanding about restoring health, share it with them.

I'll catch up with you all later this week with a yummy recipe. Slow Cooker Spicy Coconut Chicken. YUM! It's my new favorite meal, and I cook it at least once a week these days. You don't want to miss it!

GF Vegan Chocolate Pudding!

I feel like I haven't posted in months! I have been sick and living the "treading-water" life day to day, just trying to keep everything above water. It was definitely time to update, so here is a new post with a great recipe...

I have been dealing with some UC flare issues for the past month or so, and craving chocolate pudding all the time. I love pudding. It doesn't require much digestion and it's such a friendly dessert (if there is such a thing?). I love slurping it up when I'm feeling crummy and my guts are angry. Chocolate pudding is my favorite, and I have made both cook 'n' serve and instant versions from the box for years, but I've always wanted to try making pudding from scratch. The ingredients in the box are not always pleasant to read, particularly when you're looking at the most popular pudding brand in America (not to name any names... Bill Cosby used to do commercials for them...). Even the "organic" versions of box pudding can be frightening. So I took it upon myself to find a pudding recipe I can indulge in that is free of all my allergens. I wasn't sure if I'd find anything without eggs, because they are a major ingredient of classic homemade puddings and custards. But this recipe turned up, I gave it a whirl, and I've now made two separate (eight servings each) batches. -Actually, I made the mix, and my Hubby cooked both batches! How could I forget?

A few notes:

• To cook, we used canned coconut milk from our local Asian market. It gives it a nice chocolate coconut flavor, and thickens much better than rice milk (nothing worse than expecting pudding  and ending up with a runny soup!)
• The Dutch cocoa gives the pudding a rich, chocolatey flavor that no box mix ever has. 
• If you are very gluten-sensitive, make sure to use certified GF cocoa powder and powdered sugar.
• I sprinkle my powdered probiotic on top of every bowl of pudding right before eating, and stir it in well. I know it helps my guts!

Give it a try and let me know what you think! Sorry I don't have pictures -- it didn't last long enough to snap any.  :)


GF Vegan Chocolate Pudding
Makes two batches of 8 x 1/2-cup servings (16 total)

My favorite part about this is that I know exactly what is going into the mix:

• 1 cup Dutch process unsweetened cocoa powder
• 1/2 cup cornstarch
• 1 3/4 - 2 cups powdered sugar (use 2 cups if you like your pudding really sweet)
• 1 teaspoon salt

Place all above ingredients in a large bowl and whisk to thoroughly blend. Set aside until you're ready to make pudding. (Sidenote: I think this would make a great gift for a food-allergic friend. Pour the mix into one or two clean, dry Mason jars, tie on some bows, put them in a basket with the necessary number of cans of coconut milk, the recipe, and a new spoon or spatula - voila! How fun would that be?!)

For cooking (now or later):

•  4 cups canned coconut milk OR your favorite dairy-free milk substitute
• 1 1/2 tsp vanilla

To prepare pudding:
In a medium saucepan, add 1 3/4 cups dry chocolate pudding mix and 4 cups milk. Whisk to dissolve the pudding mix. Heat on medium until the mixture bubbles and begins to boil, whisking constantly to prevent burning. Contine to cook for about 2 minutes until the pudding is smooth and thickened. Remove from heat. Stir in vanilla and cool before serving (or enjoy warm - sometimes it really hits the spot!). Makes eight 1/2 cup servings.

** Mix makes two recipes of pudding, or sixteen 1/2 cup servings. **