Staring Down the Monster. And, Another Big Needle in the Gut

I have been meaning to sit and write out this post since October, when I titled and saved it as a draft. So much has happened even between then and now, that this post alone could be the chapter(s) of a book.

Early October I had just had my bout with cholangitis, been in the hospital on antibiotics for several days and had a failed ERCP to try and open the strictured (narrowed by way of inflammation turned to scarring) bile duct that contributed to the issue. We'd just been emergency-moved out of our home as there was black mold discovered under the house, and I was processing all of that, along with the newest topic brought up by my liver team the week before: retransplantation.

Retransplantation has gone from being my nemesis, my enemy to be avoided, denied, and not even considered at any costs, to a dark scary monster standing between myself and the life I expected to have when I got married and became a mother, to what it is now... a very possible reality in my future.
Once you're in the position of having to face a fear, and your survival hinges upon facing that fear, you just do it. Not all in one fell swoop easy as pie, but in a graciously gradual process that God takes you through, holding your hand and opening your eyes to what you need to see.

I'm thankful to say, it's not such a monster anymore. The worst part (in my experience) of needing a liver transplant, is how helpless the waiting list can make you feel. You have no control over whether you'll get a liver or not.
Liver transplant is the most intense, physically challenging organ transplant, and livers are not easy to come by. There is no dialysis like kidneys have; there is no life support like a lung or heart machine. It's a perfectly designed filter and toxin-eliminator for the body, crucial in digestion and life itself. There are partial-liver transplants now, where a living donor is able to give part of their liver because it will regenerate, and the piece that is placed in the transplant patient will regenerate as well. However, these kind of liver transplants have a lot more bile duct scarring complications, and when you're already needing a new liver because of your scarred bile ducts due to PSC (primary sclerosing cholangitis) it isn't a great or sometimes even viable option.

*This is the perfect opportunity to make mention of tomorrow's special distinction: February 14th is not just Valentine's Day, but also National Donor Day. If you are not sure you are signed up to be an organ donor, please visit the national registry and get signed up! Follow this link and click on your home state to do so: http://organdonor.gov/becomingdonor/stateregistries.html
Here is a great little informative article just put out in a college newspaper yesterday, detailing some of the most common questions and concerns about organ donation: http://thesnapper.com/2014/02/12/have-a-heart-this-organ-donor-day/
When in doubt, just ask. As an organ donor you can save or enhance up to fifty lives. That's amazing!
There is still a huge need for registered organ donors in the United States, and especially needed are minorities. It's estimated that eighteen people pass away every day waiting for an organ. Consider it and do what you can. Ok, PSA over :)

Back to the not-so-fun scenario of being on the organ transplant waiting list, and having no control whether you'll receive the life saving transplant that you need...
This is where it becomes so important to ground yourself daily -moment by moment- in Truth. There is One who knows my future, and I'm no more in control of the ultimate destiny of my life than a healthy person that the Lord watches over. I continually find myself responding to any mind monsters or doubts that come up, "Maybe so... BUT GOD."
"But, God shall supply ALL of my needs."
"BUT GOD will satisfy me with long life and salvation."
"BUT my GOD will fight for me; I need only to be still."
"BUT GOD knows the way that I take, and when He has tried me, purified me through these challenging times, I will come forth as gold, giving Him the glory."


I didn't update after my ERCP to fix the stricture on January 27th (my guy and I celebrated our seventh wedding anniversary that day in the hospital, by the way! shout out to my amazing hubby!). That was the second attempt since October, and it didn't work. The doctor that did the procedure is world class, has decades of experience, and tried for two or three hours (I can't remember, I was intubated and under general anesthesia for it, and so sick and sleepy for hours and hours after, I missed all the reports, Lol!). But that one stinker of a sharp turn where my transplant was sewn to my bile duct, he just couldn't get the wire through that they needed to put in the stent.

Checking out of the hospital the day after my last ERCP, Jan 27th

Meanwhile, my bilirubin has gone to a level over 20 (normal is 0.2-1.2), my AST/ALT/Alk Phos (liver function tests) are very high, and I've been so jaundiced and itchy, it's been quite the couple weeks!

Orange flavored Cholestyramine, a powder that kind of suspends in water, not dissolving, and you have to just get it down because it's supposed to bind to bile and help get it out, lessening the itching and bilirubin #. It is NOTHING like Orange Juice :)

I was very nauseous for a while, and finally figured out that I wasn't digesting fats very well - that's something you take for granted if your bile ducts are working! I normally eat healthy, nourishing, Primal style meals including butter, Greek yogurt, avocados, full-fat canned coconut milk, etc. I had to curtail that whole way of life and switch to fruit and veggie smoothies twice a day.

This morning I had my favorite: Beet juice, tons of super greens, small handful of blueberries, half a banana, carrot juice, fresh squeezed OJ... Amazing how daylight minimizes the jaundice in this photo. I'll take it!

It's been fun and neat to see how that helped me to recover from the nausea and even keep up with my busy little gal most days all on my own while Hubby works, despite the crazy state of my health. God is always allowing me to live outside the box of sickness that I "should" fit into according to my labs and test results. He's so good!

Tomorrow is the day we are going in for "Plan B" - a PTBD - Percutaneous Transhepatic Biliary Drain. It will be done in Interventional Radiology, where they'll sedate me and use various radiology technologies to find the route, then using a (always too large looking!) hollow needle, go right through my abdomen, through the liver, into my bile duct, insert that handy guide wire that's resisted two other attempts via the ERCP route, and put in a stent to open up this darn strictured bile duct. The plan as it stands is to leave that stent in for up to six months to allow scarring to happen around it, creating a much bigger opening so bile can pass through. Something doctors said after that last ERCP attempt was that, at least visually it appears, most of my bile ducts "have lost function. They are strictured and scarred to the point where little to no bile is passing through."
I put that in quotes because, that's may be a fact, but I choose to keep fact separate from Truth. That report is not what God says. It's what my very smart and caring doctors say, and now that they've gotten this information, I will follow all the steps needed to pursue a transplant eval and be listed, because I am not foolish.
However--- THIS is ALSO where my mind calls forth the TRUTH--- "I walk by faith, and NOT by sight." "Faith is being sure of what we HOPE for, and certain of WHAT WE DO NOT SEE." "Though the vision tarries, wait for it; it will surely come." "NO weapon forged against me shall prevail." "By HIS WOUNDS I AM HEALED!" "AS Jesus is, so AM I in this world!"
You get the idea. :)

Bottom line: I'm not letting this "Monster" take me down. The battle for our lives - whether we're recovering from an addiction, healing from a trauma, trying to bounce back from a failed relationship, or facing some dark diagnoses - the battle begins in our minds. Fill and fix your mind on things above - Philippians 4:8 tells us, "I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse."

If your mind has junk in it, gather it all up like you would rotting food in your fridge, and kick it to the curb! Life is too precious to spend it stuck on garbage thoughts that aren't from God. Life, and life abundant is what Jesus came to bring us - not just in Heaven but here on earth. But it's completely our option - something recently pointed out to me, was that Jesus said, "I have come that they MAY have life..." That leaves the ball in our court.
Speaking from experience, it is so worth the effort and repetition that it takes to build new habits in your thought life, to step out on your sea legs of faith and start looking past a bad report to what the Word says. It may feel completely awkward at first, but it gets easier, and more routine, and pretty soon it is your norm. If you want to do it, you can and you will!



If you've read this far, thank you for bearing with me ;)  This probably should have been two or three separate blog posts! A little secret - we haven't had a working computer in a couple years. We have an old netbook that we have to hook up to our TV to see anything on, and it gets overheated after five to ten minutes of just booting up most of the time-- needless to say I wasn't blogging from there! But about a year ago an incredible family in our world gifted us with a Kindle, which has been an absolute God-send not just for when I'm in the hospital, to stay connected and entertained, but also in parenting a two year old! ;)   And this week I was able to get a keyboard to go with it, which I'm so excited about! I cranked out three quarters of this post in no time! All that to say, you should be seeing more frequent but less lengthy posts from me in the future. SO many times throughout the week I think, "Ah, I should blog this!" usually as I'm learning something I'd love to get down in ink and share with you all. Now I'll be able to do that much more efficiently. Wahoo!



I hope I've informed, encouraged, spoken truth or life into your airspace today.
I'll close with this:

"This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live, and that you may love the Lord your God, listen to His voice, and hold fast to Him.
For the Lord is your life, and He will give you many years in the land."
-Deuteronomy 30:19-20

My two greatest treasures and me at MESH Conference this week. Nothing can keep us away from the House for long! I love my church!

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...

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!!

Easter Hope and Healing!

Jesus is alive :)

Happy Resurrection Sunday to you, or as you may know it, Easter!

We are experiencing some amazing weather in the Seattle area this weekend: gorgeous sunny days with temps above sixty! This is a delight to us lifelong residents. Easter here usually feels more like October than spring.
My little fam attended our church's community kid centered event in the morning, there was an Alice in Wonderland theme and felt like a full on street fair, it was wonderful! Then we had lunch, dressed in our Easter best, and headed back to church to serve. What an awesome night, two great services celebrating what our Jesus has done for us.

I just had to update and share that not only did I make it through all of Saturdays events, I made it out Friday to the mall with some friends, Thursday night running errands a long time, and I am still going, just need rest for a while.

God is so good. Monday night we went out as a family, and had a great time. But when we got home, I had another return of the migraine. It took until Tuesday night, but I got finally a RX from my doctor for a med, and it helped! So after six days and nights of almost constant migraine... relief!

Each day since has been improving in overall energy and function. I finished the antibiotic doctors put me on in the hospital. Gut infection all cleared up! No signs of bleeding. No signs of low platelets! Less arthritis. Sleeping through nights. Energy to go out and do things! Strength to pick up my Victory! What a change from two weeks ago in the hospital. Thank You Jesus.

I also had check ups with my new GI doctor, my primary care doctor, and my new liver doctor. They all went well. My fave part of it all is when my liver doctor said, "You are nowhere near needing a new liver." Woo!!!!! That was GREAT NEWS.

So, I just wanted to write all this down, even just for my own encouragement later, and declare my hope for this pattern of improving health to continue.

Thank You God for healing, for hope, for answered prayers, for EASTER!

I hope you will take time today to recognize Christ's death and resurrection. Without it we would be dead and lost in our sin and pain. Because of it, we can have hope and life with God forever.

Happy Resurrection Sunday! Jesus' love for you is greater than any shortcoming you possess - embrace that today.

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... (and Hurray, tomorrow is Christmas Eve!)

Hello friends!
Christmas will be here in two days, and two days after that, it will have been two MONTHS since my last update! Oops! I've often thought about needing to fill you all in on what's being going on, but haven't had the energy or desire to sit and type it out. I sat down today and typed this out - it might be a bit rambling but it's an update :)


So the last time I posted, we were just starting to walk through the treatment process for ITP (immune thrombocytopenia pupura) which we were told was my diagnosis for the sudden drop in my platelets. I started the N-plate ("romiplostim") shots on a weekly basis. Our weeks were full of clinic appointments, lab blood draws, and infusion center appointments for the shots. (If I never have to go to that medical center again, I will be a happy woman! I know it too well!)

My platelet counts seemed to be responding to the shots for the first month, at least. But in recent weeks, despite increasing doses of the N-plate each week (which made me SOOO SICK, by the way) the numbers were not going up, or actually decreasing still. My hematologist recently decided to declare that he isn't sure I have ITP after all. After getting nine shots that are just to treat ITP? That wasn't so encouraging, but Hubs and I began to understand where the doctors are at - things aren't responding to their medications, and they are stumped. Period. I have become a guinea pig and they are shooting in the dark now with their ideas. They wanted me to get a full neck to pelvis CT scan last week, to look for "more significant" lymph nodes to biopsy, because they are now thinknig they may have "missed lymphoma" in September after taking out the node in my neck.

Phew. And that is the short, no-details version of this story that has been playing out for two months. All the while, we have had Thanksgiving and the Christmas season come along, and I've been trying to create some traditions and memories for our family especially our sweet Victory (who is 16 months old today!). It has been a testing time for us. I was SO SO sick from the shots, I have decided I can understand a little bit where chemo patients are at when they are so very sick. I had no desire to eat, I've lost ten or fifteen pounds (which I didn't really need to lose... Baggy skinny jeans aren't a good look!). I was more exhausted than ever before. I had terrible joint and muscle pain and aches. It was a messy time, and made worse because it took about a month to convince my doctor that the symptoms were definitely from the N-plate, because of a pattern we noticed, and I needed some medicine for nausea and the like.

Thankfully, the week they were finally listening to me, I started to feel better. But Hubs has missed so much work, we have gotten closer than ever before to not being able to pay our mortgage. We have been gifted groceries and gift cards from friends and family for food and gas. Our church family continues to be the most amazing body of people we've ever known. I am so proud to belong to a church that looks like the Church God desires and created to exist on this earth. Surrounded by our faith family, we have never felt alone or without hope. The best people on earth - I'm convinced!

Last week I had a short overnight from the ER to the medical floor of the hospital. My clinic called me right after we left the blood draws and said my platelets were down to 3,000, and I had to go to the ER because they were concerned about bleeding. When they took my labs at the hospital, their lab came back with a level of 13,000, and after a platelet transfusion (my first ever) that night they went down to 10,000. That's when the doctors really got confused, Lol!
I talked them into letting me go home the next evening, because watching for bleeding there and being bored, away from my daughter, and paying too much money, versus sitting at home where I want to be, watching for bleeding - it's a no brainer.

Since I have been home, God has sustained me every day. No serious bleeding, no ER. I have been learning so much about what it means to ask God for enough strength and sustenance for the day, and leaving it at that. It is much like Him providing manna for the people in desert. Just enough for the day, no more, no less. Wow, what a blessing that growth has been to my faith and my daily life, already.

Last week was a wonderful change of pace for us. I went to see a new doctor, a practitioner of alternative medicine, who is also a follower of Jesus. Wow, what a refreshing time it was, where we were empowered, encouraged, and given real, true information about what is standing between me and health. I am so thankful for the new path I have started from that appointment. I cancelled the CT scan which was going to be Wednesday. I cancelled my blood draw, and I cancelled my hem appointment. We all needed a break in our little family, and it was a good decision.
The main reason for cancelling the CT was radiation. Did you know one CT is worth 500 X-rays of radiation? Yuck!!! I cancelled the blood draw because my veins need a break. I had two IVs blow in the ER last week, my arms are a mess. And I saw no need for the appointment without labs to discuss. I think I will get my number checked next week, but I have so enjoyed the break from the hamster wheel of testing and results and bad reports and possible diagnoses. It can be really negative and sometimes you just need to get out of it!

I am just so grateful to be out of the hospital, to be with my family, to be able to go to church today and have gone out yesterday and made a Christmas time memory with my sweet Hubs and daughter. I'm going forward each day approaching it one day at a time, asking God to sustain and strengthen me enough to be able to do what He has for me at that time.

I believe healing is still ahead for me. Every day it has not happened yet, I am one day closer to the day it does happen. God is willing and able to heal today just like Jesus did in the New Testament -He's the same yesterday, today, and forever! I am looking forward to being healthy and strong again one day, yet in the meantime, I will not let this testing make me a bitter or negative person. I will become a better person from every challenge I walk through; that is a commitment I will never regret! And to choose joy in every moment that isn't so joyful on the surface - that is my gift to myself, my family, my friends........ Our greatest power is our power to choose. Thank You God that I get to choose my response to every situation in life!

So stay tuned in 2013... greater things are ahead for every one of us that pursues them!

Home from the Hospital, Hurray!

For those of you not in my world on a daily basis, I thought I'd better update and let you know what I've been up to. My last update stated I'd be starting my Romiplostim shots to treat ITP later that week.
Well, things got worse a little too early in the week to wait. We were on the phone off and on with my hematologist all day Tuesday, discussing the treatment and if I really had any option to wait or go with something other than Romiplostim, because I really didn't want to have to stop breastfeeding just cold turkey and without tapering down Victory's feeding schedule, or without either of us being ready, frankly! Once I'd worked through all of my questions, concerns and frustrations (have I mentioned I have a really patient, kind doctor? because it needs to be mentioned) I decided, ok, I will go ahead with that plan. During the last conversation with my doctor, it was my husband on the phone with him. I asked him to ask my doctor if he could put in a lab order to check my platelets. I was really not feeling well - just exhausted, weak, and like things were just not right in my body. He put in the order, we drove the fifteen minutes to the lab, I got my blood drawn (and received much more concern from the phlebotomist than the day before, apparently I looked a lot worse!), and we left the clinic and started driving the long way home down backroads, because the traffic for the Justin Beiber concert that night was making the freeway look like a mess and a long wait.
Within ten minutes of leaving the clinic, my doctor calls - my platelets are down to 3,000, critical in the medical world. Criticial meaning, you're not just looking out for bruises or even nosebleeds, but your brain could just start hemorrhaging at any point. Not great news. Doctors orders, I had to get to the hospital right away and be admitted through the ER, and start some treatment.

I was amazed thinking about how I almost didn't get my lab drawn. I'd made such a fuss that day that my doctor had said we could wait until Thursday to draw any more labs. Definitely a God thing that I felt funny and spoke up!

So we got home as fast as possible (which felt like it took FOREVER!), threw some things into bags, I grabbed the ripe bananas on the counter to take with us because I figured they'd be black and very scary by the time we got home - not knowing when that would be, and we drove away. Dropping Victory at the grandparents' house (by the way, I am so grateful for amazing parents that I can trust to keep my baby safe and well taken care of, and the fact that they live in the same area. Thanks Mom and Dad, you are a blessing!) we continued on to the hospital. Driving there, I got a headache, and when we were waiting in the ER for my room to become available, it got worse and worse. When they tell you that your brain could hemorrhage any time, a migraine out of the blue makes you a bit nervous. It stuck around actually for the next four days, and finally went away when a resident thought to give me something called Imitrex (not sure on the spelling of that) which is for treating migraines. That was quite a week of pain I never want to repeat!!

I am too tired still to get into all the details of my hospital stays (yep that's plural-part of the long story), but I'll do a quick bullet point list, leaving out a bunch of the medical details I'll try to share later:

• Admitted to the hospital Tuesday night
• Given oxycodone (on an empty stomach - blech) for the headache, Tues late evening - didn't help
• Given tramadol for headache early morning Wednesday - didn't work
• Had to wait for Zofran too long, and threw up from oxycodone and tramadol - headache still there
• Nurses were so helpful and gathered sterile specimen containers and zipper top bags so I could pump milk, and they put it in the refrigerator so we could keep if for Victory. My doctor agreed to put off my shot one day so I could have more time to pump. That was really nice of them and meant a lot to me.
• Two infusions of IVIG Privigen (intravenous immune globulin) Wednesday 3 am and 8 pm
• Visit from my parents and sweet Victory Wednesday afternoon :)
• Visit and dinner and magazines to read from wonderful friends Wednesday evening :)
• Woke up and got sick, felt terrible, got everybody worried and wanting to keep me there more days - then felt much improved in the afternoon
• First Romiplostim shot Thursday 1 pm
• Convinced the doctors I was feeling better (I really was for a time) and got discharged Thursday around 4 pm
• Driving home, that night, next day, next evening - resting and fighting the horrible headache and feeling miserable
• Fever of 101 Thursday night and early Sat morning - went up to 102 point something then, and :sigh: I had to go back to the ER. Threw up at home as we were leaving - good thing I had a collection of pink buckets from the hospital stay 18 hours earlier!
• Arrived at ER, amazing husband told them I'd just been there thru Thursday for low platelets, I am a liver transplant patient (always a big deal when you have a fever and are in the ER - they take it very seriously), and had a high fever and horrible migraine type headache. They took my temp and it was up to 103. 
• I got an IV, they gave me a pain med called "Delottid" (spelling?), it helped headache, it wore off, they gave me more Delottid. In the meantime someone drew some blood for labs, I was taken for a head CT to look for brain bleeds, they put a mask on me because the doctor thought there was a very small chance I could have infectious meningitis, they gave me Tylenol in an untraditional manner to get the fever to go down, and they put in a catheter to get urine to test... and all I remember besides that is waking up every few hours, looking to my right and seeing Hubs leaning over the bed rail trying to sleep - or praying - I haven't asked him what he was doing. I just remember waking up, looking over, seeing that, and crashing again. Like something out of a movie I tell you! I have quite a colorful medical record, but I am not usually the girl creating a hectic scene in the ER. Interesting experience for me!
• Turns out we were there waiting to be admitted, for 11 and a half hours. Have I mentioned that my husband is a saint? He is the most incredible man I know, dealing with all of my nonsense health issues, and all the ramifications of those - financial and otherwise - and the guy never complains. He is a saint, and I am blessed.
• Somewhere around 4 pm I was taken to my room - woke up enough to walk from the ER stretcher to the bed (four steps or so). Went back to sleep, woke up at dusk. Fell back asleep. Turns out that the anti-nausea med they were giving me with the Delottid is very sedating, creating that 24+ hour blur I have. All that sleeping + high fever = a crazy damp bed, let me tell you!
• Saturday around 7:30 pm a neurologist came in to my room and said they wanted to get some spinal fluid to look for meningitis - because of the ongoing headache, high fever, and nausea. Translation: spinal tap! Another one for the medical bucket list! It wasn't that bad.
• I think it was Sunday morning, a resident suggested I get that migraine med, and I tried it and PTL, my headache left, finally!!! I got another dose of that when it tried to sneak back, and it worked and kept it away - and it hasn't been back since!
• Sunday I don't remember a whole lot, except kicking my hubs out to go to church and get some encouragement, which he did. Turned out he got a LOT of encouragement, hugs, prayers, LOVE! We have an amazing church!
• Sunday afternoon friends came to visit after church - more friends came - family and sweet Victory came - then everyone was gone.
• Sometime in there they came back with a report from my spinal tap that there were white blood cells in the fluid, which is called "aseptic meningitis - inflammation of the meninges." Also, we learned that the IVIG I got infusions of the previous stay can cause something called "chemical meningitis." 
• They had started IV antibiotics late Saturday night I think, and continued them late Sunday night/Monday morning.
• Monday all the doctors that had been following me came through and gave their OK that I could go home, as my fever was gone, headache was gone, nothing was coming back on my spinal tap, and I was feeling much better in general.
• The doctors concluded that my symptoms that brought me back to the hospital were either a reaction to the IVIG or Romiplostim, just a severe reaction not usually seen especially when only 5% of people react at all (agh, why do I always have to be the small percentage on the negative side of things? LoL), the chemical meningitis from one of those, or an enterovirus (stomach bug/flu). No real answer, they said, but those are their guesses. The spinal fluid cultures are still cooking, and they told me they will call if something shows up, and I need to come back in the get IV antibiotics. So far so good :)
• We left about 6 pm Monday, and I was feeling so good! Since then I've probably done more than I should (I have a difficult time sitting still, I want to DO things always!) which is probably why I feel weak and tired often. But I am feeling good, my platelets were at 32,000 Monday morning, the only bad thing is that my white blood cell count is now at a point where they get really concerned, and I have to be extra cautious of sick people and going out because an infection would be a bad thing to get right now. They have no idea why my white cell count is so low, so if you like, pray with us that they can figure that one out and find a simple solution.

Five nights and six days, and my husband hardly left my side. I am thankful that his employer and managers are understanding and concerned, and never make him feel pressure to be at work when he simply cannot because of my health issues.
I pray that God provides the resource that we won't have because of this last week of missing work, and provides for the bills that are on their way. Only He knows how we'll get this paid for. I even pray that somehow we'll still be able to take a family trip this year. We had just started planning a road trip to the old west, Yellowstone Park, Mt Rushmore, and many other fun and historical places, and I hope we can still do it. Six years and one vacation is not enough, especially for a family that lives with the kind of pressure we that is there, from my ongoing challenges.

Thank you to my church family, friends, relatives, and blogging pals near and far that have been praying and cooking meals, doing laundry, offering to babysit, and some have even sent cards and given resources to us that are so helpful in this time. It means the world to my little family that we aren't alone in this fight, and so many others are believing for my total healing. Thank you! I can't wait until that happens and we can all celebrate together! Xoxo

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

Post-Bone Marrow Biopsy Check-In, and Humbled Gratitude

Hello! I wanted to check in and let you all know how I am doing post-bone marrow biopsy. As of right now, I'm feeling well! The biopsy was kind of interesting... I got all ready and my IV in upstairs, then they wheeled me down a floor to the area where they do lung scopes, because they have the means to use sedation in that area. Once we were in the procedure room, the nurse got me ready - sticky things onto my chest for the heart and respiration monitor, getting me onto my stomach and keeping the cords untangled, etc. They let Hubs walk me down there, and he ended up staying the whole time. I told them he could wait in the corner (ha) but they let him stay right up by me and hold my hand throughout the procedure. It was pretty mild as procedures go: clean the area, stick some needles in to "numb" it, make a little incision for the bigger needles, stick in the bigger needles, get syringes of fluid, and again needles in, bottle up the samples and send them off to the lab. (This is the run-down that Hubs gave me.) The process was simple. What wasn't so simple was the fact that the doctor was going into my bone - my pelvic bone in my back, to be exact, in between my left hip and spine. Hubs said that at one point the doctor was tapping, tapping, tapping (kind of like hammering) to get into the bone for the samples. ::Shudder much?::

I am told that I was dozing for just the first minute or so. As soon as the needle for lidocaine went in, I cringed and said, "Ouch!" They had to keep going with that, and I repeated my cringing, flinching and "ouch"-ing. Then when the real needles started, I really yelped and was saying, "That hurts!" and crying. That all went on until they finished. :(
I'm glad I don't really remember that, although I have a weird dream-like deja-vu memory of it, and I woke up in recovery crying. (SO strange to me that I have no recollection of getting off the table and into the stretcher to be wheeled back upstairs - but Hubs said I was 'awake' and did it myself. Trippy!)
My poor doctor, he called me twice -later that evening and the next afternoon- to see if I remembered and how I was doing. I think he felt really bad. He is really compassionate; the nurse told me that most of the hematologists don't give their patients anything for this procedure. I have to give that a big, "OMG - are they crazy?! I wonder how they get any samples?!"

Recovery was simple, except it took me a long time to get the drugs out of my system. We got to go home within the hour after the procedure, but I took almost a two hour nap once I was at home, and stayed groggy all night. I was bummed that they gave me more sleepy juice when I was yelping, because it clearly didn't work quickly enough to inhibit the pain or my reactions, but it stayed with me all night. Icky stuff, but a blessing to have, too.

My doctor called that evening to say that a quick look at the bone marrow show it looks "quite healthy" (yahoo!!) and so in that case, he's going ahead with his hunch (after putting all the pieces of my recent and past health history together, which he did quite thoroughly in our pre-biopsy consult), that it is my immune system destroying platelets, something like the condition ITP. So he prescribed me a four day Rx of Dexamethasone, which is like a super-Prednisone steroid drug, to hopefully get my immune system to calm down. It was very interesting learning that this condition affects a lot of young women that he sees in his Hematology practice, and that often it can happen after a viral infection - your immune system is working hard to fight the virus, and it can "misfire" and start destroying platelets along with viral cells. Fascinating, and totally fits with Emily's immune health nonsense, right? (Haha.) Have I mentioned I would like a new immune system for Christmas? :)
On the positive, of course, there are too many things to list, but one huge one is that I'm grateful for an immune system that works overtime, instead of not enough!

So I'm on day three of the Dexamethasone, almost done, and it's not bad. I even get to continue breastfeeding for most of the day, I just pump in the mid-day when the dose is highest in my body and feed Vicky at bedtime and in the morning. She is so in love with nursing, still, it is so sweet, and I'm grateful I didn't have to take something that would have been incompatible with nursing. Weaning her abruptly would be traumatic. Another thing to thank God about! (By the way, I did check with my friend who is a brilliant pharmacist, and also with Vicky's pediatrician. Always good to make sure about these things rather than not informing yourself of any risks.)

One more thing about the biopsy:
My doctor is awesome - I asked him at the end of the consult if we could not do the biopsy if my platelets had gone back up to normal (they would draw a sample to test once I got my IV in), and he said sure, without even looking at me funny. I think he sees people with some faith occasionally :)  The gals from the lab came in to the procedure room right after my doctor, with their special sample-gathering equipment, and delivered the news on my platelets: they were down to 10,000 - that or below that is considered "critical." Yikes! My doctor looked at me and said, "It's good we're doing this then, just in case," and I agreed.

Tomorrow we re-check my platelet count. I am believing it will be back to normal! The exciting thing about this condition is that after this short treatment, it can disappear (or go into remission) FOREVER. Please agree with me in prayer for that outcome!

Speaking of prayer: Wow, I have been so humbled by the prayers of my Christ-following friends and my church family - my strongest teammates in life! They (some of you reading this!) are lifting me up to the Lord in mighty prayers, and I want to say thank you again! I really felt it yesterday in my body! Yesterday I woke up with NO MORE PAIN at the biopsy sight. It didn't hurt all day, until I was running through a parking lot pushing Vicky in her stroller and it just ached like a little bruise for a second (yes, I was running and pushing the stroller, and we were both laughing our heads off! It was the best!)
But back to what I was saying - I'm so thankful for a church that is family; just like God designed it to be. I am grateful for so many believing with us that my healing is on its way. I'm so thankful that God placed Hubs and I in our city four years ago this month, where we knew no one, and drew us into an incredible church where we knew not one person but each other, but knew right away that it was HOME.
I would be a messy mess without my church, without the wisdom, encouragement, and sense of belonging and purpose I receive from being a part of that house. And I am so, so grateful that somehow, although I feel like I don't contribute a thing compared to what I'd love to contribute since my health really took a turn, somehow our little family has been endeared to so many special people, and somehow it seems God makes our hearts and love and commitment to our church shine through even if we're absent more than we'd like, and not able to serve as much as we want to serve.

What a gift to know I am loved and not looked down upon one bit, and that so many of my teammates just want to see me whole and well again - BETTER than before. That reminds me of the heart of Jesus. I love you, my Champions Centre family!

[Bone Marrow Biopsy] or "Should I Start a "Medical Bucket List?"

How was your week?

I can't really remember past yesterday, as it was a completely exhausting day and my brain decided to take a short strike, I think. :)

I titled this post, "Should I Start a 'Medical Bucket List?'" because lately, it seems like I am setting personal records and doing things I've never done before -not in sports or business like perhaps I wish I could, but in the hospital arena. I set a new record last week - 15 vials of blood drawn in one sitting. And on Monday, I will be seeing a hematologist (already done that - nothing new there) and getting a bone marrow biopsy (that one is something for the 'bucket list').

It all started when on Thursday I went into the lab to get some blood work done, in preparation for a check in appointment with my Rheumatologist coming up this Monday. No big deal, just some basic's: CBC (blood counts), CRE (inflammation levels), etc. No  big deal, I thought. But Friday morning when I woke up, I had two voicemails waiting for me, from that familiar phone number of the hospital's main line. I've had that experience more than enough times, and know it's not the beginning of a quiet day. Ugh...

The first message was from the infectious disease (ID) doctor I saw last week; she was calling to discuss the results of my 15+ blood tests. The second message was from my hepatology nurse practitioner, who was contacted by the ID doctor because of some unusual numbers that showed up on my CBC. I called each of them back, eventually got in touch with both practitioners, and learned that the results from last Friday's fifteen plus tests were looking good. No infections, no viruses, nothing showing up that pointed to why I had those swollen lymph nodes. That was all good news.

Then it was explained to me that the blood work done last Friday, as well as the blood work done on Thursday, had come back with concerning platelet counts. They have over ten years' of records and my platelets have always been stable. Early September they took a drop from 200,000, and now they are below 50,000. The term for low platelets is Thrombocytopenia. This is concerning because platelets are what causes your blood to clot when you are bleeding. A count this low can lead to serious problems if you are in an accident, and if they get lower you can bleed/hemmorhage spontaneously. (Yeah, yikes!)

So, my medical team got on the case. My ID and my Rheum talked to my liver nurse, she talked to a hematologist, and the hematologist worked me in to his full schedule for a consult and the biopsy on Monday. I got between ten and fifteen phone calls from nurses, doctors, nurse practitioners and schedulers yesterday. I had to listen, learn, ask questions, process, wrap my mind around everything as best I could, explain it all to Hubs, and once everything was rearranged, scheduled, and understood somewhat, I had to ensure our sweet Victory had someone to hang out with and that I had a driver. Talk about [MENTALLY EXHAUSTING].

What an exciting start to the week- getting a needle stuck into my back. Isn't this a lovely illustration of the procedure? 

Even though that man is just a drawing, he looks so uncomfortable I feel compassion for him! Totally tense and cringing! I'm grateful that the Hem Dr. decided all on his own to give me something "to make you still like us," as he put it. When a doctor flat out calls something "rather painful," instead of using their typical underwhelming words like 'pinch' or 'discomfort,' you know it will be an experience.

So my rockstar med team is looking at several possibilities of why my platelet count dropped. They are looking at:

• Infection. Likely not this, because I just finished all that testing and all looks good.
• Immune reaction. (ITP) Your body can mistakenly destroy platelets if it thinks they are a threat.
• Cirrhosis. My liver supposedly has microscopic cirrhosis throughout, and this can affect platelet counts.
• Autoimmune disease. Active autoimmune disease like RA and lupus can mess with platelet production. My body is messed up with autoimmune reactions, and this is my hunch as to why the platelet counts are screwy. We'll see. I think my Rheum was looking at this possibility when he ordered 14 tests for me today - checking every possibility.
• "Bone marrow problems." Hence the bone marrow biopsy. They didn't say exactly what they mean by "problems," but it could be a number of things. They want to make sure my bone marrow, where platelets are made, is doing what it is supposed to be doing. The Hem I will see is well respected and a rockstar in his field, so I hear, and I know I'm in good hands as far as getting any answers in the biopsy.

Something else that can affect platelets is an enlarged spleen. I was told after my last CT scan (last spring I think?) that my spleen was a bit on the large side. Hypersplenism (swollen spleen):

Two applicable ways this can happen are from liver disease/cirrhosis and, "Various connective tissue and inflammatory diseases."  I found that very interesting, as that is what I have with polyenthesitis, diagnosed by my Rheum last year. Perhaps that will turn out to be something?

But that's it for now. I'm on strict orders to do no high risk activities, watch for large bruises or nosebleeds, take it easy and go to the ER immediately if I have any bleeding. 

Let me tell you, I am ready to be done with medical tests and appointments and all of this for a while. Hopefully Monday's test and the following rigamarole will be good, my platelet count will climb back up, and my little family and I can go away for a little trip. I think we deserve it; it's been one crazy year for this Momma! :)

I Wanna Tattoo!

For some time now (three years maybe?) I've been tossing around ideas [Scriptures or words inspired by Scriptures] for the text of a tattoo I will 'someday' acquire. In black ink. Probably on my inner forearm. :)

I've thought about getting "Jehovah Rapha" - translated, "The Lord is my Healer." I really like the idea of getting that written out in original Hebrew.
I've also considered just one word. "HEALED" - perhaps with a reference to Jeremiah 30:17* or Isaiah 53:5.** The word "VICTORIOUS" and Romans 8:37***

Then last night, I was hopping around Pinterest (yes, I finally joined the club last month) and I came across a little text/art image, the kind that is all the rage these days to reblog on Tumblr and repin on Pinterest. It was pretty to look at, and it happened to be a verse from Psalm 71.

I read it, and it hit me square in the heart; These are the perfect words.

Psalm 71:14 - "As for me, I will always have hope; I will praise you more and more."

After all this lymphoma scare craziness (beginning, great news, ruling out other stuff), and of course with my past liver transplant, and the challenges of living with Ulcerative Colitis that just won't go into remission, awful physical pain from enthesitis and arthritis, and living with crazy food intolerances with ridiculous reactions, and now they tell me that the liver disease (Primary Sclerosing Cholangitis) has recurred in my new liver, plus the tests that say there is fibrosis that has progressed all the way to stage 4: cirrhosis...

Yeah, I have no explanation for the strength, peace, and hope I feel, except to point to Jesus, and the Holy Spirit, and my Father God. I couldn't do this without the HOPE I have - for healing, soon on Earth (yes, I am going to be miraculously healed one day, and do so many things I haven't been able to do!) and then of course eternally healed in Heaven.

It's a funny thing to be the cheerful, smiling one in a room with a medical professional, a patient, and some "bad news." But that has often been the exact situation I've been in in the past year. And I've thought often of how I would love to have a tattoo that is just there on my forearm, as a constant reminder of who I am in Christ (Justified, Victorious!), what I can count on as a promise through Christ (Healing and Hope!), and/or words that, when other people read them, allow me an opportunity to share a bit of my journey and give glory to God for being my strength and partner through the journey.

"...Wait a minute! A tattoo as a ministry tool???" Doesn't that idea just have the old-guard legalistic religious Christians turning in their graves :)
(That's me being facetious; no need to get offended.)

*Jeremiah 30:17 - "'But I will restore you to health and heal your wounds,' declares the LORD.
**Isaiah 53:5 - "But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed."
***Romans 8:37 - "But in all these things we win a sweeping victory through the one who loved us!"

A Little Surgery and a Lot of Faith

So, I had a little surgery on Friday. It was ambulatory surgery, which meant I got to go home about an hour or so after the doctor stitched me up. I had a lymph node on my neck swell to a noticeable size a few weeks ago, and when I was in for my annual liver check up last week, my ARNP thought it would be wise to have it looked at and biopsied by an ear, nose and throat specialist (ENT). A "biopsy" turned into an "excision" (by the way, before this week I never knew that word existed, and I hate it!) in which they removed the whole thing so there would be more for pathology to study.

The medical experts looking after me are taking precautionary measures because a lymph node sticking around without any recent obvious infection or sickness is concerning, especially in transplant patients, who can have a higher rate of developing lymphomas because of the years of suppressing the immune system with medication to prevent the body from rejecting the transplanted organ.

The surgery was fine, I didn't even go to sleep (my choice), I just got a little bit of relaxation juice and they numbed the area locally. There was an exciting moment in which my surgeon (ENT specialist) had to move my nerve connecting my neck to my back shoulder muscles out of the way to remove the lymph node. He'd brought up that scenario as a rare possibility/risk of the surgery during our consult, and it was interesting that I ended up being one of the few people having that interesting (and challenging, for him) quirk in my anatomy! He got my attention when that happened, reminded me what he'd said in the consultation, and then let me know within that same minute when he'd moved my nerve out of the way. Riveting, right?!
I enjoy being semi-involved in the medical procedures I go through; it's fun to be able to speak to the team and ask questions, and also answer questions, and learn about what they are doing. I suppose not everyone feels that way about surgery, however, so thank God for general anesthesia for those who want it :)

The surgery took less than an hour in the OR. They stitched me up and sent off the lymph node to the lab where they will test it not just for lymphomas but also bacteria and fungus. What an interesting job that guy has that came to pick it up - transporting specimens. I wonder if he knows what he is transporting each day??
Anyway, then I went to recovery, and after I took a little snooze I asked my nurse for ice water and got a little cup of it. (Not eating for twelve plus hours gets easier with time - not drinking ANYTHING, especially when nursing and being a thirsty person anyway, is no fun!) When Hubs finally got to come back to the recovery area, he brought me my treat of choice, and possibly my new favorite thing: Ginger Root Beer Zevia and a nurse filled my water bottle with ice and I got to sip on Zevia and eat a pear.

Here I am in recovery, feeling less groggy and ready for my beverage and snack:

We stopped at Chipotle on the way home, where Hubs picked up a steak bowl for me - gluten free with extra rice, no beans, no salsa (boo nightshades!) and of course no cheese or sour cream.
Once we got home, per the information given me by anesthesiologist and the nurse anesthetist, I fed Victory as soon as she was hungry. The meds they gave me for the surgery were not concerning or requiring me to pump and dump, and we never saw any effects in Victory to show they got through the breastmilk.

This whole string of events happened very quickly, starting with my liver appointment on Tuesday, seeing an ENT that afternoon, having a CT scan of my neck Thursday and the surgery by another ENT on Friday.
It was a bit surreal to experience it all, to be sent from one appointment to the next, and have that concerned look from doctors and the word "lymphoma" keep getting thrown around.
But I got my bearings and "put my big-girl panties on" as my pastor's wife would say, and realized I just have to do what I have to do. I'm definitely growing in my faith, because I haven't fallen apart into hysterics or a blubbering puddle once! (No shame in that of course, I've done plenty of that over the years!)  I have had a peace that surpasses my understanding this whole week, and I thank God for providing me with that. It's truly been a Philippians 4 peace. I love the way The Message describes it:

"Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life."

I have been speaking health and wholeness over my body and trusting that Jesus' work on the cross has already provided for my healing of anything that would try to take root in my body. It is more faith testing and more character building for me, and that is exciting in a way because I know that means God has greater purposes for me ahead.

Speaking the Word over my body and my life is not something I always knew about, and practicing it the past few years has changed my life. I highly recommend it for every day, but especially when you are sick or getting medical testing done or walking through a fire of another sort. Nothing happens to you that God doesn't know about, so trust Him and keep your confidence in His promises, and speak and repeat them over yourself. There is power and life in our words (Proverbs 18:21)!

• By His wounds I am healed!  (Isaiah 53:5 and 1 Peter 2:24)
• NO weapon formed against me or my body will prosper! (Isaiah 54:17)
• God has good plans and a secure hope for me (Jeremiah 29:11)
• I have a hope that is an anchor to my soul (Hebrews 6:19)
• "But for you who revere my name, the sun of righteousness will rise with healing in its wings" (Malachi 4:2)
• "For I WILL restore health to you, and your wounds I WILL heal!" (Jeremiah 30:17)

I am still sore around the incision, and OH SO itchy! I did not remember from my transplant so long ago that stitches itch like mad!!! My stitches have Steri-strips on top of them as well, so the corners of those poke the soft skin on my neck and it is just one irritating good time, haha! Thankfully the pain is better each day, I hardly had to ice my incision today. And I got the OK to shower tonight!

That reminds me, not being able to bathe for three days I ventured into the world of "dry shampoo" this weekend. I found a gem in the most affordable one out there: Suave Dry Shampoo Spray. I bought a can of it on Sunday morning before church and Hubs helped me spray it into my hair and I rubbed it in. It worked so well, my hair looked smooth and healthy but not too shiny, and it even made my natural color look prettier than usual. That was a great find.

The testing on my lymph node is expected to take until at least Wednesday to come back. It sounds weird to say but, in this context, we are obviously rooting for something like an infection to be the root cause here, because it's simple and treatable with antibiotics. We are praying and hoping for the best, and I am so grateful to say I'm not even playing the terrible "what if" game anymore.

I will update when we hear more.

I'll wrap up this post with this from Matthew 6. I have it written on my wall to read often:

"First, be concerned about your Father's kingdom and what has His approval. Then, all the things you need will be provided for you. So don't ever worry about tomorrow - after all, tomorrow will worry about itself."

Why You May Need to be Grain Free! Watch & Consider

This five minute interview with Dr. Peter Osborne is worth watching. Some quick bullet points it covers:

• Typical gluten free diets include heavy amounts of corn and rice
• Proteins have been found in corn that are identical to proteins in gluten - the gluten-sensitive immune system reacts the same to these proteins, and don't heal
• Lectins, chemicals found in beans and seeds, act like gluten, creating leaky gut walls
• Leaky gut leads to more and more food allergies
• Seeds were created to produce and perpetuate life, and so they have protective chemicals to prevent extinction - when we eat these, they end up in our gut. Don't assume they don't harm you!
• Grains induce intestinal permeability and autoimmune disease
• Study published: 92% of celiacs did not recover on a "traditional gluten free diet"
• In comparison, often when a person goes grain-free, they are healed completely
• "Healthy whole grains" are promoted on commercials... but aren't healthy!
• Gluten is now tied to 190 autoimmune diseases!

My family has been 99% grain free since January (no gluten, dairy, or soy since last year), and it has worked wonders for my health and the activity of autoimmune disease in my body. PLUS, my basically healthy husband has lost 30 POUNDS (with no changes to his activity level - just food alone), has no more foot pain despite his 6-7 miles of walking on concrete floors at work each day, and more energy each day.

There is something to this, guys. Please watch and consider for yourself.

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.

Auto Immune Disease Sundae Infographic

I ran across this infographic at Sarah Wilson's blog today. Thought I'd share it, because it's humorous and true at the same time, and all of us AI-er's (great people with auto-immune disease) can use a giggle most every day :)

"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."