His Higher Ways

Things have not been easy lately. That about sums it up.

However, I have some very special people in my life surrounding my little family in love and prayer. I received a card and a grocery gift card last week from one of those special people. The gift card for groceries was hugely helpful to us in a practical way, and the card is very meaningful to me as well because of the message in it. The words resonate with me in this season and brings peace. It says,

"When my life didn't turn out the way I had hoped,
I asked God for help.

He gently reminded me that His plans were better than anything I could have ever dreamed.

His plans for you will be wonderful."

Printed above that is one of my favorite verses, Jeremiah 29:11:

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

The message in the card reminds me of another verse, Isaiah 55:9,

"As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts higher than your thoughts."

Sometimes when I read that Scripture, I feel like having a childish tantrum and complaining and whining. "Why aren't my ideas and my plans working out? Why can't I be the boss of my life? How dare God not think I know what I'm doing? Waa waa waa"

Yep, total tantrum and completely proving that I'm not spiritually mature yet (that takes a lifetime and more, I'm convinced). But thankfully I am growing, because those tantrum moments don't last as long as they used to. And they flow into new moments, where I am reminded that God is the perfect parent, and does know best. Because of that, I can and need to trust that His fatherly reminder in Isaiah 55:9 is reliable. I can put my faith in it, and trust that when I believe it not only will I live with so much more peace, but my life really will turn out beautifully. He knows best, and I need to be obedient with that simple fact.

I really like The Message translation:

“I don’t think the way you think.
    The way you work isn’t the way I work.”
        God’s Decree.
“For as the sky soars high above earth,
    so the way I work surpasses the way you work,
    and the way I think is beyond the way you think."

The way it is written there, it really paints the picture that God's ways are truly better than mine. When I let go of my small, human perspective and jump into His arms for the greater life He has in mind for me, I won't regret it. Never ever. And that rings true in every experience I've had so far in my 28 years. Whenever I have moved forward into an adventure, into a scary step, with courage and trusting that God's plans were the best, I have been rewarded each time with amazing growth, experiences, and memories.

So whether we're talking about me continuing to face these "incurable" diseases and tough days head on with hope and the future in mind, or maybe talking about you jumping out and taking a risk to move to a new city or job where you know you'll make a greater impact for Christ... the adventures He has in mind for each of us are so unique and beautiful. Whatever it may be, will you join me in facing the challenge with a faith that God has better things ahead than you can dream up, even if there are a few bumps in the road between here and there? Meaning, it won't always be easy, it won't always be sunshine and rainbows... but it will be worth it!

One of my favorite things about Jesus-following life is the great adventure it truly is. There is no more exciting or thrilling or rewarding life on Earth! His ways are higher, His plans are greater...
Let's not let fear or uncertainty or especially comfort keep us settling for anything less!

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

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."