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To Live Is Christ, To Die Is Gain

Friends, as most of you know by now, my sweet sweet Elisabeth slipped off into glory on April 23rd. She is gone, but not lost. She’s not lost because I know exactly where she is. Heaven.

Well, here we are. I miss her and I know you do too. I’m not a writer but my beautiful bride would always tell me to speak from the heart, so that is what I’m going to do.

I’d like to talk about Lizzie (this is what most folks called her), to me she was babe, boo, dear, sweetheart. Lizzie had the biggest personality for such a small gal. If she was in the room, you knew it by how she lit it up with her big blue eyes and bright friendly smile. She was amazing. She was sweet. She had grit. She had passion for the Lord. She lived well. She suffered well. She died well.

Lizzie brought James 1:2 to life. She lived it. Although she was in a trial that should have taken down the fiercest of men, she was able to find JOY in it. And she would tell you that it was only because of the HOPE that she had and the FAITH that she had. That FAITH that has now become sight. I watched the Lord over the last three years take things from her (her health, her hair, her sight, her physical strength, and the list goes on) but despite losing these comforts, her strength and joy in the Lord only grew. Why you might ask? Well I’ll tell you why. Let’s look at James 1:2-4. It says this “2 Consider it all joy, my brethren, when you encounter various trials, 3 knowing that the testing of your faith produces endurance. 4 And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.” Elisabeth had JOY. Why? Because she knew the Lord was refining her. Because her faith was being strengthened to endurance. Because she knew God was using this extreme fiery trial to melt her, to shape her, to forge her into the exact person He needed for Heaven. Now she is perfect. Now she is complete. Now she is lacking in NOTHING!!!!

Lizzie ran the race and fought the good fight. 2 Timothy 4:7-8 says this “7 I have fought the good fight, I have finished the course, I have kept the faith; 8 in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day; and not only to me, but also to all who have loved His appearing.” Friends! She did it! She has fought the good fight. She was a soldier for the gospel. She has finished the course. She ran the race towards Christ likeness. She has kept the faith. She guarded the truth with her life.

Lizzie has inspired me to live a life well lived, suffering along the way with grit, and keeping my eyes focused on our great Savior, Jesus, the son of our great God.

I don’t know about you but I am so excited for the day when I get to see my sweetheart again and serve our Heavenly Father together with her, FOREVER. The day where there will be a magnificent reunion. That day will come soon. Sooner then we even know because we are only here for a mist (James 4:14). This great reunion I’m talking about is in 1 Thessalonians 4:13-18. It says this “13 But we do not want you to be uninformed, brethren, about those who are asleep (these are Christians, THIS IS LIZZIE), so that you will not grieve as do the rest who have no hope (these are those of you who do not have Christ). 14 For if we believe that Jesus died and rose again, even so God will bring with Him those who have fallen asleep in Jesus. 15 For this we say to you by the word of the Lord, that we who are alive and remain until the coming of the Lord, will not precede those who have fallen asleep. 16 For the Lord Himself will descend from heaven with a shout, with the voice of the archangel and with the trumpet of God, and the dead in Christ will rise first. 17 Then we who are alive and remain will be caught up together with them in the clouds to meet the Lord in the air, and so we shall always be with the Lord. 18 Therefore comfort one another with these words.”

Did you just read that with me!?

If you are a child of God, this is so amazing and comforting! Lizzie, and your loved ones who knew Christ as their savior, are the ones who have are asleep vs13. They are the ones who we will be reuniting with vs16 and 17! They are the ones we will FOREVER be with the Lord together vs17. Fellow brothers and sisters! Let us use this passage to encourage each other! Let us use this passage to keep our eyes focused on heaven! Let us use this passage to fuel our hearts to tell those who have no hope, that there is HOPE!

Friend, if you are one with no hope…If your heart is numb, cold, and confused with these passages you’ve read, if this is YOU…Lizzie would want you to know- you want to be where she is. She would want to see you at this great reunion. Friend I want to see you at this reunion. Any true believer wants to see you there. I promise you- you don’t want to be one who grieves with NO hope. You want to be where my sweet sweet Lizzie is. With Jesus. In Heaven. I’m going to tell you exactly what Lizzie would have said at this point: “Hey friend! Pick up a bible and start reading 1 John”. So pick up a bible and start reading. It is the Word of Life. The only book you will ever need.

Well you might have some questions for me. How am I doing? What’s next for me? What does this next season look like? Where am I going to live? My broad answer is, “I don’t know, but God has me in His trustworthy hands”. But I will try to share with you what some of my plans are knowing God has and will continue to direct my path.

How am I? Well I just saw my sweetheart breathe her last breath here on earth. That was not something I ever wanted to see. A piece of my heart went to heaven on that day. Yet.. Along with Job I can say, the Lord gives and the Lord takes. Blessed be His glorious name. (Job 1:21) Along with David in Psalm 6, I flood my bed with tears every night. Along with Solomon I can say, it’s far better to be in a house of morning than a house of feasting. It’s far better because its sobering. It keeps us focused on what really matters. Heaven. The Gospel. Jesus.

Will there have been a few hymns that have become bitter sweet for me. I sing “It Is Well With My Soul,” I tear up and lose it at these lines: “Though trials should come” – Trials did come for Liz and I. We would not have traded them for anything because we got to see deep things about who God is. “And Lord haste the day when the faith shall be sight” – Liz’s faith has now become sight as she has seen Jesus face to face. I sing “In Christ Alone,” I tear up and lose it at the lines: “No guilt in life, no fear in death” – Liz had no fear in death. “From life’s first cry to final breath” – Liz has had her final breath here. “Tell He returns or calls me home” – He has called my sweetheart home. I sing “Rock Of Ages,” I tear up and lose it at the lines: “Let me hide myself in Thee” – Liz and I knew this was/is the only way to go through the rough, painful, beautifully horrible trails in life. “Simply to the cross I cling” – Clinging to the cross was the only thing that made sense to Liz these last few years. It was the only thing that gave her Hope. It’s the only thing that gives me Hope in this dark storm. “And while I draw my final breath, And when I close my eyes in death” – I saw my sweetheart draw her final breath, I saw her close her eyes in death. That moment will forever be burned in my memory.

And what about this new season? Well..I don’t know, but I do know how holds my future in His loving hands. I will keep my eyes focused on heaven. I will continue to follow our great and almighty God. A God who gave me such a wonderful gift, such a sweet gift, Elisabeth. The same God who created this earth (Gen 1:1). The same God who holds us in place with gravity. The same God who spoke the earth and all of its creatures into existence (psalm 33:9). The same God who will one day destroy Satan and death FOREVER! (1 Cor 15:26). YES, this is the God I will continue to surrender my life to every single moment of every single day. He will continue to guide my steps down here on earth, and then will guide my steps when He comes or calls me home. The eternal home where Jesus is, the eternal home where my sweet sweet Elisabeth is.

I will love my dear Elisabeth forever. My love for her will never fade.

I will close with a prayer.

Oh Lord I love you. Lord thank you for saving my sweet Elisabeth. Thank you for giving her to me, if only for a short time, and for my sweet bride even 50 years would have been too short. Thank you for snatching her from this world of physical torture. Lord I long to see your face like my bride has. Please Lord let those who don’t know you know you. Oh Lord please open the eyes of those who don’t believe in you. Open their eyes to know that there is only one way to heaven. Through the blood of your son on the cross. Through surrendering their entire life to you. Through believing in you oh Lord. Oh Lord, soften the hearts of those who are reading this. Amen!

In Christ,

To live is Christ (Caleb) To die is Gain (Elisabeth)

Here is the link to Lizzie’s memorial service below. I pray it will be an encouragement to you.

March Update

So, as of Thursday night (March 22) , I will have gone to the ER 3 times so far this month for 5+ different reasons. It was also our third wedding anniversary, and we celebrated a year of having our Pomeranian puppy, Danger! Which also brought about quite a few reflective thoughts, as he has been a huge help in coping with this disease. I have five unfinished blog posts that I’ve started writing out (and/or thoughts and heart changes inspired by this month) so far, but my vision (and in turn, God’s better judgement and sovereignty) have prevented me. So I’ll finish and share them when I’m ready! ‬‬

Im so thankful to be home now, embracing beloved quiet, keeping a healthy distance from screens (mostly because my vision is so blurry and painfully light sensitive), keeping a healthy distance from answering questions.

Can I add a ‘helpful-for-me’, little side note? Answering health questions has been understandably consuming about 80-90% of my time lately. Which, I’m learning how much more deeply illnesses are effected by stress. For example, the stress of focusing on this disease by answering frequent questions about it throws my exhaustion/fatigue of adrenal failure from a 4/10 into a 0/10 most of the time… this was magnified so much at the hospital, but can you guys keep this in mind when you’re texting, messaging, and when you see me? Let’s talk about you! Thanks friends!

This disease is something else… I’m feeling weak, depleted, and very, very human… we’re daily asking God to lend us just enough of His superhuman strength to make it through each day, and He does… with just enough. 🙏🏻♥️

I don’t have much else to say, other than the fact this disease continues to be harder than anything I could have ever imagined. but God redeems hard things, and He defines goodness differently than we do. His definition of goodness is greater than ours. More beautiful. More relatable. More true. Everlasting.

It was heartbreaking though, this week… the hardest inpatient hospital stay I’ve ever had out of… maybe 10 stays over the last decade? I’ve lost count. I’ve never stayed in the hospital with this many alloimmune symptoms, meanwhile on so many heavy pain meds altering my perception and emotions for such a consistent long time, meanwhile being interrupted at my bedside every 20 minutes by one of my 17+ doctor specialists, nurses & therapists m to ask me 20 questions at random throughout each day and middle of the night. It was… overwhelming…

Yet. Here’s the struggle. And it’s real. In the same night, both myself and another inpatient with chronic GVHD articulated to the same nurse that we both regret getting the transplant. We regret our successful cancer treatment. For a few of us: our cancer cure turned to be worst than the cancer. But we’re all so different with different dna from different transplants, so there’s no comparing!

And here’s the other struggle. When my cancer returned, I knew enough to know that I did NOT want to do traditional treatments again. I had already researched 3,000+ hours into health in regards to my specific health issues. I am my own best and most knowledgeable doctor & GVHD specialist on my team (but it’s still a team!), but I’m not yours. Be your own advocate!

Anyways. When I suspected it was back, I hit it with everything natural I could. For about three weeks I did my own variation of the gerson diet, budwig protocol, made my own essiac tea, rebounded every hour, wheatgrass a few x a day, juicing greens, high doses of curcumin, food grade frankincense EO under the tongue every hour, apricot seeds, you name it, I’ve most likely given it a fair try. And I responded! My lump shrunk, my blood counts improved, I felt it was working… but just not fast enough knowing the nature of my aggressive cancer.

I got opinions from three different clinics in Mexico who I know of, have been to or trust, all of which encouraged me that western treatment for Acute lymphoblastic leukemia was the most successful route technology has available for me so far. They could have taken my money and my life, and they didn’t!

I realize that I made the wisest choice for myself at the time. God was sovereign in that. So I will not let this root of bitterness spring up (correction: continue to grow) despite it being the biggest struggle of my life at this point. I do regret not going with my gut and following through with fighting it naturally, just a little bit longer before proceeding with western treatments again. That is for another blog post, and hopefully a future book.

Everyone is so different, so I would not give medical advice on that to anyone. I’m not anti-medicine, it’s good to be aware of all your options and all perspectives! But The Truth About Cancer is an excellent (in my opinion, the BEST) resource if you’re curious to learn more abbout cancer prevention and alternative treatment options that have shown to be promising for a lot of people. 🙏🏻

That was the first time I’ve heard someone else feels the same about the transplant, only to find out that there were four others on the floor that week who articulated the same that week. None of us felt adequately prepared or warned for this disease… at least two of us had our chronic GVHD effect our bodies so severely that the pain and discomfort of daily life with chronic GVHD didn’t feel worth it.

There are a lot of thoughts I could share, but I have been on heavy painkillers for 3 weeks straight and am waiting to articulate anything of that magnitude until these medications are well out of my system! But yes. It is infuriating. But God is still God.(Job 38-42) I am still redeemed and saved from an eternity of Hell that I totally deserve (John 3-16), with the hope of swelling heaven with my Perfect Hod and all of His family. And I’m still called to live according to Romans 12:2. Which is easier to do when you’re dwelling on what you’ve been saved from.

Symptom update: I’ve been able to eat and swallow a little bit more, my vision had improved (though the last few days have been difficult again, but still progress from a few weeks ago! Writing in the middle of the night is the best time for me because of the darkness). So I’m hopeful that all the acute reasons for why I was admitted are getting better, and I still have a few months to see further progress in my blood treatments and IL-2 clinical trial. So we continue to hope and pray!

I’m thankful to be home on a strong gut restorative probiotic protocol to recover from some of those heavy hospital antibiotics 🙏🏻♥️. Thank you for the continued prayers, friends!

The last week the hardest symptom to deal with has been that the scleroderma (hardening / tightening of the skin from my neck down) makes me feel claustrophobic lately at night, like I’m wearing a full body corset at all times. It’s extremely uncomfortable and the last three nights I’ve only slept 1-2 hours a night since getting home from the hospital. At this point, praying for symptoms just feels silly. There are so many.

I’ll list the most common ones just so you know how to pray and be aware.

To be clear about my hospital stay, so I was first recommended to stay as an inpatient because of my bad acute eye & mouth sore reactions earlier this month. The eyes & mouth have the most pain receptors in the body, and both of mine were in 10/10 pain for a while… Then I was admitted because along with those issues, I developed bronchitis & a sinus infection. So it was a good week for getting my infections under control, getting the nourishment I needed while waiting for my mouth and eyes to heal.

Lately it’s also been hard because my mental capabilities are changing, but I’m not sure to what degree, yet.. I’m seeing a neurologist about it soon… I can’t process loud voices, two voices talking at the same time, or multi tasting the ways that I used to, and sometimes I forget the most obvious words. I’m not able to insert myself into conversations like I used to, so lately when a normal person asks me a question, I’m unable to raise my voice loud enough to interrupt them to respond. Well, no one thinks to pause to let the other person talk anymore, especially millennials! So for the last two weeks at the fast paced hospital, I’ve felt so unheard. Then I try to explain myself and the person interrupts me to tell me to stop explaining. So this is my life now, seemingly endless conversations of people asking me questions, then getting inpatient when I can’t respond and getting more impatient when I want to explain myself. I have a whole new compassion for the elderly because I relate to so many of their ailments now, and hopefully I can help share a little bit of that awareness and compassion to you! ♥️

Along with maintaining IV nutrition with my acute mouth sores (I wasn’t able to open my mouth, we, or talk for about 5 days without the worst pain I had ever experienced. Caleb was out of town. I begged God to take me to heaven every 15 minutes for about 5 days. And it was the sweetest, most intimate time spent with my Counselor, Comforter, Keeper, Father and Friend. Jesus could hear me. He could understand me. He understood my tears and loved me through them. Even Caleb can’t do that for me perfectly like He can. He understands the pain that no one else can comprehend (Isaiah 55). And you know what, it was the best week for me. Ii can’t wait to sit down and write about all the sweet things the Lord taught me through those five, relentlessly painful, Jesus defendant days. He carried me. That’s another post for another day!

-EYES: severe dry eyes making them severely painful to keep open if I run out of drops. I’m getting special serum tears spun with 30 vials of my own blood, and having prosthetic lenses made. Two weeks ago I lost the top layer of my cornea, and have several exposed corneal abrasions on each eye

-MOUTH: severe dry mouth, making it hard to talk, chronic ulcers, ability to swallow & open mouth by 40% capacity & loss of most taste. Loss of tongue muscle function making it hard to talk & hard to articulate words. Shortness of breath making it also hard to talk while walking or standing.

-SKIN: scleroderma hardening / tightening / fracking of skin from the neck down, causing constant severe nerve pain all over my body & a constant total body corset tightness feeling, along with chronic ulcers. At one point I had 70 severe non healing ulcers on my chest & back, and ironically the only thing I’ve found that’s helped heal those ulcers, isn’t an FDA approved medical treatment, but actually a really simple, painless red light therapy device at home using a protocol I put together for myself at home! (Again: a future post & hopefully a future book on this) butbif you have ANY sort of skin issues, mild or severe. Red light therapy is worth looking into! That, along with photopheresis blood treatments helping the rest of my skin has me feeling hopeful. Let’s pray for all of this to stop progressing and start healing!

-GI: Chronic diarrhea & vomiting

-ETC: random new muscle spasms that can be severe at times in the feet & rib cage I think from scleroderma. Also losing my nails, and dealing with frequent other symptoms that come and go unannounced. My hair still hasn’t grown back from the GVHD induced alopecia I got it 2016, so finally going to look into seeing if insurance will approve a full cranial prosthesis! (Higher quality medical prosthetic - better than a wig -vthat’s built to last, look natural and with a special cap that’s more comfortable for people with permanent hair loss! Praying insurance approves it but it’s always a slim chance. Trusting God knows what’s best for my heart!)

So, friends, pray for my heart… I was so vibrantly joyful and hopeful last week. It was supernatural vibrancy that I ONLY have when I have my joy in the Lord. Any other time: that energy is nonexistent and I’m too exhausted to keep my eyelids open! My smile was sincere. I had so many incredible stories to share from the first half of my hospital experience. And this week I just feel. Human. Sinful. Hurting. Crazy. In pain. Sad. Sleep deprived. Emotional. Brain fog. Sympathetic of my sweet husband who’s going on overdrive at all times and still leading me in scripture when I can’t read for myself. Drawing near and asking Jesus to draw near right back.

At this point, the main redemptive quality to my life this last year has become writing for you. Savoring the sweetness of understanding Paul in Philippians 1:21, to live is Christ and to die is gain. He found joy in his suffering because God used it for good. It encouraged his brothers to press on. But yet, the only thing that would be sweeter (and is the world’s greatest fear) is to be out of the hopeless misery of this world and looking into the brilliant face of God. To be filled with His presence infinitely. (Which obviously isn’t attractive and makes no sense if you don’t know Him!) The more pain I’m in, the more of His redemptive hope and light shines through. And by His wounds I’ve been healed. (Isaiah 53:5)

Please press on, Christian friend. Be curious, stranger. Have hope, millennials.

Like Psalm 42, my tears have been my food, but the Lord sustains them all. “Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation”

‭‭Psalms‬ ‭42:5‬ ‭

ADDITION: I wanted to extra clarify and end this post with a more intentional tone of hope: whenever I share openly about how at times I’ve longed to go to heaven because of pain, that is so different than a desire for death. My soul will never die, so death isn’t even on the table for me. So of coarse death has no sting! But please don’t misunderstand my heart, I am not praying for my life to end. There still time to see improvements with all of these treatments and clinical trials, and so know God had me here for a good Purpose despite the pain, so it’s worth enduring. but I am totally praying for deliverance from the suffering, comfort and growth through that comfort. I trust that God will answer that prayer in the best way He sees fit. In light of that, I can truly laugh at the days to come with the Proverbs 31 woman, I get her a little better now, thanks to trials and God’s infinite wisdom. We laugh because we know we have nothing to worry about, God is sovereign, and what matters are things that are unseen. (2 Corinthians 4:18) And THAT. Is another reason to remember that trials are not to be feared, but embraced. Now, I’m getting off to go try and live in that mindset! ♥️

Update as of 3/13/18: I was admitted to city of hope last night as an inpatient for bronchitis (sooo thankful, we were worried it was pneumonia again!) I anticipate being here for about a week. This has been physically the hardest month of my life (aside from August 6 2015, the day when my dad unexpectedly died and my cancer returned). I haven’t been able to open my eyes without heavy doses of morphine around the clock, among several other reasons for the morphine. Every hour of the day is different and dependent on pain killers. I’m actually amazed that I’m able to post this! That’s an answer to prayer!

I don’t know what tomorrow holds, but I know that I have nothing but Jesus (Psalm 73:25) And in light of that, well, this is hard…. the hardest thing I’ve ever had to physically endure, way harder than cancer, aggressive chemo, or max capacity total body radiation treatments ever were in my 5 years of experiences with them. Life hurts. I’m not happy about this situation or this chronic GVHD that I’m in the 4% worst severity of. I don’t want to be here, in this unceasing, ever changing and unexpected pain, fatigue, and weekly changing severe symptoms..

Life isn’t easy, but in light of Jesus, I’m still okay. In light of Jesus, I know I’m here for a reason. So all of this crap (literally, per last week’s post. lol!) isn’t a waste. My incurable-disease isn’t a waste and it’s not in vain. And there are good things m, blessings coming out of it (psalm 84:2). Jesus’s eternal hope (John 3:16) is totally worth enduring all this pain. He’s totally worth enduring all the pain in the whole entire world. (and while I hope my heart isn’t dramatic or selfish in sharing this, but lately there have been many times where I do feel like I’m living in that reality, fighting for my life each day. Fighting for God’s unfailing and comforting and perfect peace (Isaiah 26:3). God’s word is sustaining me. So if God can give me peace in this crossroads of a storm, why not entrust your daily, hopefully less life threatening trials to Him too?

Are you hurting today? He is waiting to embrace you with His loving arms. He has you where you are today for a reason. A purpose. What is your purpose? If you profess to be a Christian, don’t waste your trial, Jesus’s perfect loving sacrifice for you; by complaining or giving in to self pity. ♥️

“Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.“”

‭‭Matthew‬ ‭11:28-30‬ ‭

The Day That Happened. Gas station poop dilemmas and other stories: A Day in the Life with severe Chronic Graft vs Host Disease.

This is my gas station poop story. If you can’t handle it, I warmly invite you to stop reading.

First things first: a small update. I don’t have energy to write a full one, but this has been the hardest physical month of my life living daily with chronic GVHD thus far. I had a few different separate bad reactions a few weeks ago which put me in the ER, unable to open my eyes or mouth in all severe pain, or move my body without severe scleroderma skin hardening/tightening/cracking pain nonstop for around 5 days. My team wanted me to be an inpatient for two weeks for pain management and IV nutrition but they didn’t have any beds available. Thankfully it’s much more comfortable for me to be at home though with all of my autoimmune relief protocols so it worked out better. I’ll share a better update when I have less going on… the good news is though, I am seeing small results from the photopheresis blood treatments, my skin is improving little by little. Which means that they’re working for now, and we hope to see more improvements as the months pass! Please keep praying! I also had a little accident where I lost the first layer of my eye and now have large (not visible) wounds on the outer later, the last few days I haven’t been able to open them at all but thanks to the help of a friend I was able to get this finally put together! I am waiting to get an appointment to have these special PROSE (prosthetic) eye contact lenses made, as well as special blood serum tears spun from 30 viles of my own blood from the only clinic in California who offers this technology, in Irvine. What a blessing that I have this accessible to me! My eyes are so dry they’ve been unable to heal, and I can’t open my eyes at all without heavy pain killers. So please pray that my eyes would miraculously heal quicker than we expect, or that all of these processes would be expedited. All of my issues are very specific and require specialists who book out pretty far in advance.

Back to my story!

The day that happened.

The morning started off better than usual. My acupuncturist who has become one of my favorite people in the world lent me her very own healing mini biomat. She has a full sized Amethyst Biomat in her office that is amazing if you go 2-3x a week for chronic inflammatory health issues. But she wanted to see if using a portable size one at home each night might make a difference with all of my severe symptoms, so she let me borrow her personal one to try sleeping on and using whenever I have time at home during the day for two weeks. God is so kind to place so many sweet people in my life who are going out of their way to help me!

Not gonna lie, I was skeptical. I have tried many wellness tech devices in clinics and at home and didn’t expect much more of this one. But my goodness, does that thing make a world of a difference when you’re using it consistently for insomnia, chronic pain, chronic fatigue and so much more! I could sing it’s praises and would love to learn more about this technology so I can share more and help my other chronic pain suffering friends!

SPEAKING OF WHICH! Kathleen and I put together a little Spring Seasonal discount for my friends and readers, if you’re interested in trying the full sized Amethyst Healing Biomat that she has available to reserve for 30 minutes in her space. She’d like to extend a little discount to you as well as a free acupuncture consultation to those who are interested. She has helped me reverse many of my food allergies, other environmental sensitivities, and helps me SO much with my other severe symptoms as well, which all in turn has helped me along this path. She works a lot using acupressure with kids, helping them reverse their health issues by balancing out their allergies! She’s a wonderful resource that I’d be selfish to keep to myself! I love it when my friends are able to both be helped and also supported by the people who’ve helped me! I’ll share details at the bottom! ♥️

Anyways. I was pleasantly surprised and a complete believer after using it every day for two weeks. So when most mornings I wake up feeling like I got hit by a train until I wait for pain relief to kick in, I woke up feeling better than I had in months. I was only in 5/10 pain as opposed to the usual 7/10. My sandpaper eyes were still glued shut but once I finished my two hour morning biohacking wellness routine I was ready to leave the house less tempted to have a bad attitude, which is everything for me these days!

Earlier that week a sweet friend dropped off the most amazing Julia Child worthy home baked rotisserie chicken, to which I used the leftover bones to make some pretty incredible broth! I was feeling blessings surrounding me from every side in the midst of all of those storms raging. I hadn’t been able to eat solid food in over a month or two and haven’t been able to function (eat / drink / talk / + constant sharp pain caused by ulcers, scleroderma hardening & tightening limiting the ability to swallow and also meanwhile thinning of the mucous membrane lining of my cheeks and tongue and other inside skin, causing severe sensitivity to even water) without lidocaine for a few weeks. So any taste of flavor without tears was a major win! My mom came and picked me up around noon to leave to see my natural doctor. She’s 90, and a naturopath with PhD’s in nutrition and biochemistry and is also a super sweet believer who works within the field of energy medicine, along with analyzing blood work and balancing the body using Russian astronaut biofeedback technology. (I could nerd OUT about wellness tech, guys. All day LONG!)

She has saved my life SEVERAL times over the last 8 years in some seriously hard times when the field of medicine wasn’t able to! So the morning was GOOD! It took me an hour and a half on the drive there to drink my bone broth with small bites of fresh soft sourdough with ghee on top for lunch. It only hurt maybe 4/10 instead of the usual 8!!! But I FINISHED it! It was the first meal I completed since I couldn’t remember! I played Oh Happy Day and rejoiced at that win for a few minutes.

The appointment was wonderful as always but super long because she invests time and care into each patient. I was drained. And by drained, I mean I couldn’t open my eyes, mouth, or lift a finger. When I say drained, I mean debilitating exhaustion caused by adrenal failure (what happens when you take steroids for too long, but that’s also how they TREAT GVHD! So. It’s a pickle that I’m in! We were parked on the freeway at 6:30pm. My GVHD of the GI tract decided to take its vengeance out on me at this pinnacle moment… we stopped at a Starbucks just in time… it’s hard to move because scleroderma has hardened and tightened the skin on my body from the neck down, and sometimes that causes people to eventually be in wheelchairs or on oxygen because of the loss of mobility. So I’m fighting hard against that with physical therapy and everything else… but the struggle is real!

We get back on the freeway, and sure enough, I feel another rumble. We hurry off to a well lit gas station. I hurry in and ask the Lord to please help me NOT recreate any dumb and dumber scenes. I guess this is my life now. This is fine. Ugh, do I have to start wearing depends? Does this mean I can’t wear my beloved leggings anymore? Who am I?! All these thoughts keep running through my mind. This is not my home.

This. Is. Not. My. Home.

A grizzly looking man with an eye patch and a reflective neon yellow vest with the bathroom key walks past me into the bathroom. He looks at me as he closes the door with a dirty looking gender neutral sign hanging on the back. I look nervous. He looks like the kind of man who might intentionally miss his aim. Excellent.

I’m dizzy so I lean against a magazine stand, close my eyes and continue to pour my heart out to my Counselor through each tummy grumble… in that moment, when life just felt unbearable… I was just so done. I love Caleb. I adore him. I would give absolutely anything to make him happy. My love for him and my fear of God are what keeps me motivated to stay alive and fight every minute of the day. And it’s a true driving motivation.

But in that moment… I was selfish. It was cold. My joints have been getting severely painful in the cold, it makes me shiver and have trouble breathing and then I start to panic. I was begging God to help me not have an accident right there on that gas station store floor. I asked God to please help me not catch any of these nasty germs that I was unable to fight off in this dirty bathroom. Asking Him to give me strength to breathe through the cold, strength to breathe through my anxiety, through the scleroderma breathing issues and grant me enough range of mobility in my skin during those few cold steps to the bathroom without crying from the joint, skin, lung, ulcer, eye, mouth and tummy pain. So in that moment… and in light of all the thousands of moments each day perfectly mimicking that one… I begged God to please, just let some crazy psycho come in and just shoot me in the back of the head really nice, painless and fast (Don’t worry friends I’m not remotely suicidal).

It’s funny the things you start to pray for when your body is failing.

It seems trivial now to pray for things like my finger nails to stop falling out, my hair to grow back, to be able to wear jeans and heels again… To attend church, to serve, to live, to be a mother someday… when in the same breath each minute, I’m also asking God to grant me the strength to help me take another step, another breath, and help me to chew and swallow an entire meal in without a single tear or regurgitation.

Life is a funny thing.

And I also say that, with 100% peace, assurance, confidence and joy. I am rejoicing in HOPE in JESUS through every impossible step.

Guys, I’m THIS low, there’s no confident end in sight. This is just my life now. I don’t know if I’m going to have to suffer with this for another long and painful 50 years like Joni Earickson Tada has had to endure, if I’m going to happily die and see my Savior’s face next year or if I’m going to happily heal and God will use Caleb and I mightily together here until it’s time to go to the comfort and glorious perfection of Home.

But in light of Romans 8, I have never been able to say more confidently that God is good. In light of THAT, I can truly laugh at the days to come! Proverbs 31:25. So if you’re truly a believer, stop complaining. You’re gonna be fine. Rejoice in hope!

Anyways. Icky grizzly man walks out and hands me your typical long black gas station bathroom key holder and key. They’re wet. And there’s no napkins in there. I’m still asking Jesus for help throughout this entire process because without His strength I, millennially, just “CANT EVEN.“

So there I am.

MINDING MY OWN BUSINESS.

LITERALLY. 💩

Thinking that the door is locked… because… I have the lock and key. And that’s how those things work.

So there I am… giving my body the release it needed… when BOOM. The door SWINGS NICE AND WIDE OPEN.

I’m not usually abrupt in that type of a situation when I know it’s an accident. But this girl, probably around my age lingered way too long with that door wide open for all to see so I yell at her, “CLOSE THE DOOR! I’m sorry! I thought it was locked! Please close it!!! CLOSE IT! PLEASE CLOSE IT! CLOSE THE DOOR!” Oh my gosh, does this girl not speak English? Hmm.. I’m trying to frantically remember Spanish (to which I failed in high school twice) and draw an unsurprising blank. Isn’t this common sense!? Can she not see and smell what is happening right now!?!?

This girl had to have been on something. Because she just gives me this entitled expression and says, “ummm I have to go!?!?”

I tell her again, “You need to wait! Close the door! CLOSE THE DOOR PLEASE! PLEASE CLOSE THE DOOR! CLOSE THE DOOR! GET OUT!”

Oh Lord help me.

Oh my gosh people. Meanwhile. REAL LIFE IS HAPPENING AND THE DOOR IS WIDE OPEN FOR ALL THE GAS STATION CUSTOMERS TO SEE MY EXPOSED SELF AND MY SCENT IS NOT REMOTELY RESEMBLING IT’S USUALLY BEAUTIFUL AROMA AND OH MY GOSH CAN LIFE POSSIBLY GET ANY WORSE RIGHT NOW.

The door swings wide open and closed maybe 10 times. She keeps repeating herself. Many expletives are running through my mind but none seem adequate or appropriate to say out loud as I was literally just talking to Jesus like 30 seconds ago. I finish, clean myself up and try to exit the bathroom but she stops me at the door and gets in my face and says…

CAN I HAVE FIVE DOLLARS?!

And at this point I’m just GIDDY! I mean come on, this is COMEDY GOLD.

WHAT IS MY LIFE!?!? 😂

So I respond by saying… I AM SO SICK AND YOU JUST RAN ME OUT OF THE BATHROOM WITH DIARRHEA, NO, YOU CANNOT HAVE FIVE DOLLARS.

😂😂😂😂😂😂😂

But you guys, this entire day was worth it because of that moment. And that story. Because who else can say that they’ve literally been ran out of a gas station bathroom with diarrhea AND heckled for money at the same time!?

I win. 👍🏻

And that, my friends, is my gas station poop story. That was just another average day in my life! What else can you do but embrace the inevitable chaos? God likes slapstick potty humor too I guess, haha.😂.

The struggle is real. But so is Jesus.

The end.

PS.

My acupuncturist Kathleen and I put together a little Spring Seasonal discount for my friends and readers. If you’re interested in trying the full sized Amethyst Healing Biomat to see if it’d help with any of your chronic pain, inflammation issues, or just would like a nice, warm & quiet rejuvenating 30 minute self care treatment, she would like to extend a little discount to you guys! If you call her office which is in a shared wellness center in Canyon Country 661-252-4100 and schedule your first biomat session with Kennealley Acupuncture, mention me (Elisabeth Effinger) or my Chemo Chronicles blog. From March 20 through June 20 you’ll recurve a 30 minute relaxing, warm pain relieving biomat session for $20 instead of $35 and a free 20 minute acupuncture consultation. If you or any of your children or family members struggle with food sensitivities or unexplainable symptoms, she might be able to help you too. She is certified in an allergy elimination technique, she’s actually helped a LOT of kids and families in the SCV area by helping remove food allergies using acupuncture (or acupressure for kids).

Please keep my sweet sister in love, Charissa in your prayers. She’s been in the ICU with pneumonia on a ventilator for over a week now. She’s been blessing my in laws with her life as they’ve cared for her full time with Rett Syndrome (an extremely rare female condition where your brain stops developing at 1.5 years old) for 34 years 🙏🏻 She is such a treasure to us and a huge part of the REASON Caleb is the man he is today! Please pray for her health and our family back in Virginia. 🙏🏻♥️

On a MUCH less important note, these last two weeks have been the hardest for me with GVHD so far. I spent the night in the ER and they wanted to admit me for a week but didn’t have beds available, but it worked out better out better to be home. I don’t have energy to write about it now but I do treasure your prayers that I’d willingly embrace a joyful and hope-filled heart, rather than a bitter and discouraged one.

I haven’t had energy to respond to texts or PM’s but I’m resting in Romans & Psalms and the fact that when no one else does, JESUS UNDERSTANDS US. 🙏🏻 ♥️1 Cor 8:3.

UPDATE 2/26: Sweet Charissa was cleared out of the ICU and is off the ventilator. Still recovering in the hospital but in a much better state. 🙏🏻♥️

This one, my lover, I will fight for him until the end of time.

So many friendly new faces have followed along since I shared my story on Instagram stories on Saturday! If you missed it, I invite you to set aside five minutes of your day to peek into a little window of my updated story & soul. Be sure to add the music I recommended, trust me! That series is permanently parked on my IG profile story highlights.

I’m Elisabeth! I’m 26, am married to this super handsome honey of mine, Caleb! We live outside LA and call our church body family, we LOVE allllll of our many nieces and nephews, we love road trips & coffee, and we have a pup named @dangerthepom!

I was a hybrid fine art film photographer for 6 years, and traveled often for it. I am a self taught “student” of natural medicine since 2011. 🤓 I’m an ENFP, a lover of all things visual and design, and looove using beautiful imagery to change my own perspective. And... a second gen immigrant who’s really into my Swedish heritage! 😍

Caleb is the anchor that steadies me. He cares about every person he meets. I fell in love with him the day that I met him, when he opened the back seat car door for me in front of his friends. 😍 He’s a Master Electrition with 18 years of experience, who grew up on the east coast working on a sheep farm and building log homes for their old family business. I am SO proud to be the wife of a quality blue collar man! 😍

I’ve been a Christian for 9 years now, and it has been quite a ride. The harder life gets, the sweeter the blessings He gives me: hope, joy, peace, contentment, security. You can read more about that in my blog, linked in my profile!

So, to update the newcomers: I started blood treatments this month and a new clinical trial last week! There’s still a ways to go before we’ll see results. But I realized something empowering this week: the darker my life looks, the brighter His light will shine through! (Matthew 5:16, John 8:12) it’s given me renewed excitement for life! I’m happiest when I’m sharing His hope, and this is new for me. Romans 12:12!

Shared via Instagram @elisabeth.effinger

Let me learn by paradox

that the way down is the way up,

that to be low is to be high,

that the broken heart is the healed heart,

that the contrite spirit is the rejoicing spirit,

that the repenting soul is the victorious soul,

that to have nothing is to possess all,

that to bear the cross is to wear the crown,

that to give is to receive,

That the valley is the place of vision.

All my doctors look at me with eyes of sympathetic compassion, they understand how I’m one of the few unlucky ones. They struggle to offer words of hope, with well intentioned comments of uncertainty, like, “New research is being discovered every day!” Which slowly drizzles salt on each and every wound. But little do they know, I’m the luckiest of all. This opportunity has been entrusted to me by God. It is the job He has bestowed upon and chosen for me: to share His perfect unfailing hope, no matter how impossible my circumstances feel. He will restore all this devastation with a good purpose, and I get to show people a tangible example of Jesus’s perfect love casting out ALL my fears each minute of each day and each night. (1 John 4:18) What an honor... what an honor to feel and believe and to live in that.

Do I really believe His words are true? I believe, help my unbelief... ❤️

For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose.

Romans 8:24-28

If only every day could be a quiet, Carpinteria day like that one... but I’ll treasure every golden memory and share them with some truth... Because heart. And because pretty.

But if you swipe right, the reality is.... Well friends, I don’t really know what to say. I’m just entering the stages of seeing if allll these new trial & error treatments will bring short term relief, and then hope and pray for consistent long term relief... it’s a delicate dance of waiting and trusting and surrendering to this unknown territory. Will I get better or worst? From one of the few diseases that I just can’t control with nutrition alone, because it was all caused by a risky, not yet fully understood medical intervention. (That did cure my cancer!) God knew what I needed, to surrender my precious, beloved control. (Because of Matthew 16:24-25 & Isaiah 45:9)

But God is powerful enough to heal even MY hopelessly weary and sick soul! Otherwise I would have definitely given up over the summer and most of these days since. That’s a treasure and delight that I want to share with the WORLD. 😍 If God can give ME true peace and a good purpose amidst ALL of my chronic tragedies, surely He can redeem yours too! Now that’s something I can rest in... His everlasting hope. 😌

So if you’d like to find hope in your chronic pain, anxiety, depression or weariness too, consider these powerful words about the God who created and designed your entire body and entire soul...

The LORD Himself goes before you and will be with you; He will never leave you or forsake you. Do not be afraid, Do not be discouraged.

Deuteronomy 31:8

No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.

1 Corinthians 10:13 @ City of Hope

High highs and low lows.

God’s goodness outshines it all, and I am carried by His grace. #lifeatgcc

I’m so tired. This week has been so long, with new specialists and lots of long back to back consultations at city of hope every day with new #GVHD specialists, new treatments and starting a new clinical trial this week in addition to the rest. Caleb is finally home for long enough to maybe feel a little bit of a routine again. So to fight the consuming weight of weariness: I’m living and dwelling in the comforting promises of Philippians 4:4-8.

Going to church used to be a mindless ritual, one that I’d carelessly sleep in for.... now seeing my church FAMILY is THE highlight of each week. But it’s hard. And it’s worth it. I love these people.

The ash from alllll these fires and wind had my eyes burning like sandpaper. New muscle spasms brought me to uncontrollable tears in the service. But these people love me in all of my vulnerable weaknesses. They accept me because God accepted and loved me first... (John 3:16) what sweetness and comfort I find in that. 😌

These are the moments I live for. These are the moments that lift every heavy and painful weight.

Dwelling in this truth today...

And I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them.

Isaiah 42:16

Ps. I’m so over having my scalp show through. My hair hasn’t even started growing back this last year. So I’m finally biting the bullet to embrace wig life! Going to try to make the most of it. 😉 photo by my sweet friend @suzyvandyke!

I have a lot of “valid” reasons to complain. Probably more reasons than most. I could be that person. I have been that person before.

But... what’s the point of that? I can’t change my circumstances and dwelling on that will only breed negativity in my heart and bring down the people I love most.

Every day feels heavy and long. I don’t remember the last time I wasn’t in severe pain with severe fatigue.... I think maybe back in August? Or June.. the Alaska cruise was nice. Pain has become my Siamese twin, which makes anxiety and weariness more like two of my closest friends. Some days are harder than others, but here’s the pattern for my good days: choosing gratitude. (Something Graft vs Host Disease can’t take away from me)

A sweet friend decided to be the world’s biggest blessing and show up to my moms (where I’m staying while Caleb is traveling for most of the month 💔) with a bag full of goodies, one of which a gratitude journal.

This morning I woke up in 9/10 pain, I felt like a tin man for the first two hours. And sitting down and focusing on ALL THE GOODNESS that God is doing in my life. All the ways He is using my Graft vs Host Disease for good in other peoples lives. And in mine.

For the first time ever, this morning I felt a little bit of gratitude for Graft vs Host Disease. Just a smidgen.

So the moral of the story is: if you want to better your life, get a gratitude journal! Maybe it’ll help with your pain too! 🤗❤️

Now I’m off to a long day of many treatments at city of HOPE! ❤️

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