Everything’s Fine

Fine.  

I’m convinced there’s not another word that could be taken to mean so many different things.  When I go to the doctor, that’s often all I hear. “Your labs are fine.”  You’re fine.  Everything’s fine.

On paper, I’m fine.  I went back to the Rheumatologist last week and he doesn’t even need to see me again for another year.  Obviously to him, I’m fine.  I am starting to think that maybe we accidentally stumbled upon the least of my problems (Sjogren’s Syndrome), and have yet to discover the bulk of my issues.  Constant stomach problems and continued weight loss, but I’m fine!  No worries here.

And yet, “fine” is my favorite thing to say when people ask me how I am doing.  I don’t know exactly why I do it on any particular day, but here are my theories:

  1. Comparatively at the moment, I really am fine.  ‘Fine’ is such a relative term.  My response may really mean – compared to having my insides revolt against me the last three days, today I’m fine.
  2. Much of the time, people don’t want to know the real answer to the “how are you” question.  When I have been honest in my response, it makes most people incredibly uncomfortable.  Very few people have a clue what to say at that point, and I cannot blame them. Some feel the need to say things like, “it will all get better soon”, “the sun’ll come out tomorrow!” (I may have made that one up), or my personal peeve, “well, you look good!”  FYI – that last one is a terrible thing to say to a person with a chronic illness.  It may not sound like it in your head, but in ours it’s as if you don’t believe we are really sick.  Why the heck anyone would make up a debilitating illness is beyond me.
  3. Some days, if I tell you the real answer to the question, there is a good possibility I will burst into tears, making us both incredibly uncomfortable.  I am trying to appear much stronger than I am in weak moments, so bear with me!
  4. I do not want to see pity in your eyes.  There is a very fine line between showing understanding and pity.  The few people who really listen and understand have meant more to me than they will ever know. They also don’t see me as the poor, pitiful, sick Karina.  They remind me in my darkest hours, when I have trouble believing it myself, that I still have something, however small, to offer the world.
  5. Sometimes I want people to believe that I am fine.  I simply want to be normal again.  I want to be part of the land of the living, where people go to work, attend social events, and don’t spend every waking moment thinking about what’s going in and out of their bodies.  I want to have a life outside of this illness!
  6. I want to believe that I am fine.  There’s really something credible to the theory that the status of the mind affects the status of the body.  There have been numerous times that I’ve been convinced I will never get better. Of course, if I have that mindset I won’t get better! I have to believe that one day this will end, either in this life or the next, so my “I’m fine” response may mean that I’m trying to convince myself as well as you.

So, what are you supposed to do with my “I’m fine” response?  That is an excellent question and sometimes I’m not even sure I know the answer.  I guess I just want you to know that sometimes the “I’m fine” can be taken at face value and sometimes it may say so much more.  If you truly want to know the real answer, if you have some time to listen and maybe a pocketful of tissues just in case, ask again. If I trust that you really want to know, I may tell you. But don’t do this unless you REALLY want to know. I cannot handle bearing my soul to you if what I get in return is cheap, flippant responses, dismissing everything I have just said. It’s OK to not know what to say.  A silent hug speaks much louder than empty words. Also realize that at the moment you ask, I really might be OK, so don’t be offended if my answer stays the same!  No matter what I say, please know that I love you for asking but I also may not be ready to tell you. Complicated enough?

At this point you may be itching to know, how am I REALLY doing?  I have good days and bad days. I remind myself all the time that I previously only had bad days, so progress is much greater than I sometimes think.  I have honestly been feeling much better lately.  It may be the diet or a lull but I’ll take either one!  I’ve been able to attend the few social events I’ve needed to attend, which six months ago would have been impossible.  It’s difficult for me to answer the “how are you” question today since I was just glutened and feel like a train wreck, but the fact that I’m sitting here typing and not lying on the bathroom floor is pretty monumental.

I completed two months on the Autoimmune Protocol before I broke it. The elimination phase was only supposed to require 30 days and I wasn’t completely better so I decided to quit being so strict with myself. If it’s not working anyway, I may as well try to enjoy life a little, right?  It may have been a bad move, but using my own intuition with regards to my health has been so refreshing.  The first thing I did was drink about a fourth a cup of coffee (yikes!), and I hate to say it, but it wasn’t all it’s cracked up to be.  I was incredibly amped from the caffeine and without all the stuff to dress it up, it wasn’t so great.  Then I found myself in one of those situations where I was out and about and had to eat something STAT.  We pulled up to the only ‘safe’ place for gluten-free folk that’s open on a Sunday, Pie Five.  They have the best gluten-free pizza on the planet.  Ask Jason, I freaked the whole time we were in line.  “Maybe I should just get a salad… but I can’t put anything on my salad… so if I get other veggies and a dressing on my salad (thereby introducing even more forbidden foods), I may as well eat pizza, right? No, I’ll just get a salad… but it’s so expensive just for lettuce. I’m getting pizza.  Should I get pizza?”  At this point my poor husband must have said in his mind, “The woman I married is insane”, while his response to me was, “Let’s just go”. Realizing my own ridiculousness, I bit the bullet, shut off my brain, and ate the most glorious thing I’ve put in my mouth in two months!!  It was incredible!

The other thing to which I trusted my intuition was giving my body a break from most of my supplements.  I was taking far too many pills a day and I just felt like my body needed to reset to figure out what problems were most important.  It was freeing not having to remember to take my medicine at all times of the day.  I learned there are certain things I do still need to take but I also was able to remember that my body knows how to rid itself of certain things without the use of supplements.  Wheat, on the other hand, is such a booger.  My body can’t seem to get rid of it on its own, no matter how long it’s been since I’ve had any.  I dream of the day when the things that help me get better are covered by health insurance!

I remind myself daily the dark place from which I’ve come.  Sometimes life still seems pretty dark, but I think maybe it’s currently only a bit gray. Remember that waiting room I talked about?  I think there’s some light shining underneath one of the doors. Maybe, just maybe, it will open soon. For right now I say, I’M FINE!!

How are you, my dear friends?

Much love,

~Karina

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Beauty in the Slamming of a Door

Originally written on February 1, 2016.

Praise God for slammed doors.  Not simply closed with the chance of being opened again, but slammed in your face.  Nailed shut.  Do not open.  When I can’t seem to close the door myself, he does it for me.  Praise God.

I’m not a decisive person.  My anxiety level rises when my husband and I can’t decide what to eat for dinner.  God knows this and I think that’s why he helps me out sometimes.  He knows that I will agonize about a decision until I don’t make it at all or, perhaps worse, I make the decision I want, which is not necessarily what’s best for me.

Hindsight is an amazing gift so allow me to tell you a story.  Once upon a time there was a very stubborn girl who planned her life exactly the way she wanted it, visualizing where she would be and what she would be doing in future years.  She planned herself a perfect little life.  This girl went to college and there fell in love with Tennessee.  She just knew she would live there, staring at the mountains, forever and ever, amen.  The girl decided to go to grad school.  She applied to a school in Tennessee and, since everyone knows you can’t just apply to one school, she halfheartedly applied to a school in Pennsylvania, which was close to her hometown.  She was accepted to the PA school, but still fully expected to attend the school in TN.  On the strangest, most heartbreaking, horrible day in her sheltered little life she received, of all things, a REJECTION letter from the TN school.  WHAT?!  Confidence shattered, heart broken, door SLAMMED, singing the Tennessee Homesick Blues all the day long. What… Just… Happened? Then she remembered a prayer she uttered while sending in both applications.  Annnnnd I quote, “Dear Lord, if you want me to go to Pennsylvania, please send me a rejection letter from Tennessee.”  For real.  Why on earth did I pray that?  Oh yes, by now you’ve definitely figured out that naive college girl was me.  I was so upset.  It’s pretty safe to say I was in mourning for my perfect little TN life.  It wasn’t that I didn’t want to be with my parents or visit my hometown.  The issue was that the life I had built in my head was crumbling.  I had fallen head-over-heels in love with my life in TN and I couldn’t imagine anything different.  The goodbyes were some of the most painful I had experienced up until that point.  I mean, who knew what would happen after grad school and if I would ever see my precious Tennesseans again?  Yes, I’m a bit dramatic.  Just a bit.  Oddly enough, the TN school changed its mind later and accepted me, but the decision had already been made and I was moving 500 miles away to live with my parents again and head to the PA school.

Did I praise God at the time?  Not so much.  My reaction looked more like throwing the biggest little girl tantrum in a post-college woman’s body. Oh, blessed hindsight.  Now I see what an incredible gift that slammed door was in my life.  Once I stopped kicking and screaming a few days…er… months into the process, those two more years in my hometown held some of the most precious blessings in my life.  There were the practical blessings, like living rent-free so I could concentrate on school and spending time with my parents.  There were the amazing friends and colleagues I never expected to meet in grad school. There was the opportunity to sing and play music with my home church on many Sundays.  But I had no idea that the biggest blessing to come from that time was the opportunity to spend two more precious years in the presence of my three surviving grandparents.  What a tremendous gift my God had given me!! When I moved back to TN just two years after moving away (yes, I got all dramatic and tantrum-y over a measly two years), all three of those grandparents flew away to Jesus within the span of just over a year.  I cannot emphasize enough so I will say it again –PRAISE GOD for two more precious years with these people who had shaped my life immeasurably!! I shudder to think of what I would have missed if I had given into my stubborn tantrum and had not followed God’s clear call back to PA.  Praise God from whom all blessings flow.  Oh, thank you, thank you, Jesus!

Right now, I’m staring in disbelief at a few more slammed doors.  I can see clearly the reasons behind some of them and I’m still waiting to understand the others.  Having to leave my job is a slammed door that I’m still fighting to open, and sometimes I wake up pounding on the door from the nightmare of losing my career.  Yes, I continue to be dramatic. It’s a gift.  But I did leave my job kicking and screaming with many, many questions like, “What, on the earth, are we going to do for money?”, “What is my life’s purpose?”, and mostly, “Why the heck am I paying out to wazoo on student loans for a degree I used for a piddly seven years?!?!?!” Oh, that question taunts me constantly.  The hardest question that runs around in my head sounds like, “Is my career really over?  At 31 years of age, is this it for me?” … along with many “WHY?”s thrown in for good measure.

Last week I tried to get a job as close to what I knew as possible.  I would have been able to work from home, connecting patients to online doctors instead of what I was doing before – connecting in-person patients to in-person doctors. I made it through two interviews and started realizing that this job may have been even more demanding than the one I had left. But we needed the money and I needed purpose so I kept going.  But there was that crazy prayer again – “Dear God, if you don’t want me to have this job, don’t give it to me.”  Had I not learned my lesson the first time? Next day = REJECTION letter.  SLAMMED door.  OK God, thank you for that incredibly clear answer.  He knew I would have been miserable, tied to the computer all day, everyday, unable to really take care of myself and my health problems.

But, now what?  I have no idea.  No one usually looks forward to sitting in a waiting room.  But now I’m hanging out in this ‘waiting room’, staring at the slammed doors all around me, not sure which ones will open and which will remain closed, locked and barred.  Occasionally in a moment of weakness I pound on one until I bleed and God takes my hands, cleans and kisses my wounds.  But there is a sort of peace in knowing that God clearly knows best and will open the doors that are right for me.  He is so patient with me as I pace the floor day after day, night after night, longing for a door to open, or at least a voice on the intercom telling me some kind of news.  He sits with me as I throw all the “why” questions at him and reassures me that he has my best interest at heart.  I know that I will walk through whichever door he decides to open and I have no doubt that I will find something incredibly beautiful.  Something prepared just for me, for such a time as this.  Even this ‘waiting room’ is beautiful, if I look really, really hard.  Thank you all for hanging out with me here, holding my hand as I wait.  Praise God for his wisdom found in those painful, beautiful slammed doors.

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Day 30

Today marks Day 30 on the Autoimmune Protocol diet.  I do not want to write this post but I feel I need to update on what was supposed to be the last day of the elimination phase.  I’m supposed to feel great enough to start reintroducing foods again.  But, once again, I’m an anomaly.  I feel awful.  I’m having one of those weak days where I am having trouble believing I will ever get better.

I sat on the porch this morning and read through Job.  I know his troubles were far worse than mine, but I can so relate to him.  With Job, I cry to God, “What strength do I have, that I should still hope?” – Job 6:11a (NIV). I’ve spent too much time hoping for the next ‘thing’ to be my cure-all. I’m tired in body and tired in heart.  And yet, I also find it within me to say with Job, “Though he slay me, yet will I hope in him.” – Job 13:15a (NIV).

How is it possible to continue in hope?  My hope is in heavenly things, rather than earthly things.  If God does not heal me in this life, he will in the next one.  “I know that my Redeemer lives, and that in the end he will stand upon the earth.  And after my skin has been destroyed, yet in my flesh I will see God; I myself will see him with my own eyes – I, and not another.  How my heart yearns within me!” – Job 19:25-27 (NIV).  Oh, how deeply my heart yearns for that day!

I cannot imagine those who don’t believe and are incredibly sick like this. What hope do they have at all?  I am so grateful to know that at the very least I can look forward to complete healing one day.  In the meantime, I struggle along with Job, “The Lord gave and the Lord has taken away; may the name of the Lord be praised.” – Job 1:21b (NIV).

My apologies for the downer update. That’s why I did not want to write today.  But my days are not without triumphs and that is what I constantly try to remind myself.  When I think of how debilitatingly ill I was several months ago, I do see some progress.  Maybe the diet is helping at least a little bit.  My body certainly didn’t get sick all at once so naturally it will take awhile to get better.

Let us all HOPE that the Lord will see fit for my next update to be much happier!  Your constant thoughts and prayers mean more than you will ever know.

Love to you,

~Karina

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Give Me Jesus

I’ve been struggling lately.  Really struggling.  Not so much struggling with my faith in God.  To be honest with you, I’m mostly struggling with my faith in Christians.  If I had to admit, I’ve occasionally been embarrassed to wear the title.

I’ve had the unique opportunity to sit in two worlds.  The Christian world where we frequently discuss what it means to be Christlike and, through my previous job, the world of poverty where we wish more people would portray what it means to be Christlike.  The general lack of those two worlds colliding has deeply discouraged me.  I’m just as guilty as the rest.  We like to talk about what is “right”, but when it comes to the “doing” part, we have a lot of excuses.  We give some money to the  missionaries in church on Sunday but when it comes to joining them in the trenches, we think we’ve done enough already.  We attend anti-abortion rallies and boycott department stores, but when it comes to actually walking alongside the hurting souls, we somehow think that’s not our job. I’ve been so disillusioned with the Christianity I see, which admittedly may be skewed by the prevalence of social media making it easier for people to spout hurtful things.  I see such little love of Jesus in Christianity and that breaks my heart into a million pieces.  Oh, I feel the love for me, mind you.  Christians love me to death because I’m one of them.  But I’m not seeing much poor-loving, immigrant-loving, pro-choice-loving, LGBTQ-loving, liberal-loving, people-loving.

And before you flip out, by “love”, I do not necessarily mean “agree-with”.  Mostly I just mean that unless you are willing to walk through the trenches with these people, offering your hand in love, you have absolutely no right to yell at them from the street corners, protest their lifestyles, or shoot them dirty looks when they’re trying to use the bathroom.  Actually, I’d prefer you not do any of that even if you do walk the trenches.  Discuss your differences once you have REALLY LOVED them and formed a relationship with them, sure. These are REAL people, loved by our Jesus.  They are not just some sin you oppose.  Do you honestly think public displays of disapproval win ANY souls to Christ?  More likely, it’s driving your own people away, into the much more ‘loving’ arms of the world. I only say this because I am there.  I have truly felt this many times.  There have been many times that I have thought, or said out loud that until Christianity looks more like Christ, I don’t want the title. “Jesus-follower”, always and forever. “Christian”, maybe another day. But just when I feel my anger and disappointment growing to the point of explosion, I am reminded that often those with whom I am angry simply have the loudest voices. Sometimes I need to look a little harder for the quieter, loving side of Christianity.

So what keeps me coming back to Christianity?  Maybe it’s the fact that I get goosebumps every time I watch someone get baptized.  Maybe it’s the Christians who actually look like Jesus… or even those who just favor him up around the eyes a little.  Maybe it’s because when I waded to the middle of the creek at Deep Valley Camp and was plunged under the water, I saw Jesus.  Maybe it’s because when my dad met me with a towel and a hug at the shore while everyone sang “Now I Belong”, I saw Jesus.  Maybe it’s because when church members offered to become my family away from family, they were Jesus.  Maybe it’s because listening to an entire college campus solemnly singing “It is Well” after the death of one of its own sounded a little like Jesus.  Maybe it’s because holding my precious nieces and nephew felt a little like Jesus.  Maybe it’s because my brother looked a little like Jesus when he officiated the funerals of my grandparents.  Maybe it’s because when I met the man God prepared for me at the end of the aisle on our wedding day, I saw Jesus.  Maybe it’s because every time a precious fellow worshiper tells me how much I mean to her when we barely know each other, I see Jesus.  Maybe it’s the beautiful servants who love the unlovable, touch the untouchable, and see with the eyes of Jesus.  Or maybe it’s simply, Jesus. I know he lived.  I know he died.  And I know he rose again.  I know what he did for me and I love him.  I know he wants me to look like him so I’m going to give it my very best effort, knowing the world is watching.

Jesus will always be enough for me.  When I remember that, the loud, protesting, unloving, discouraging voices grow dim.  You can have this world.  Just give me Jesus.  That’s truly all that I want.  Jesus will always keep me coming back.  After all, his world was pretty disillusioned too.

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A Day in the Life

Some people may wonder what I do all day now that I am home. So now I give you,

A Day in the Life with Chronic Illness:

So whether you eat or drink or whatever you do, do it all for the glory of God. – 1 Corinthians 10:31 (NIV)

6:00AM – Say goodbye to Jason as he leaves for work.
7:00AM – Take June for a walk. If I’m feeling ok I will stay up but more often than not I have to lay back down after the walk. Mornings are difficult.
9:00AM – Prepare breakfast. Today I had homemade sausage (sausage you buy is not AIP-compliant because it’s full of sugar and nightshades) and a grapefruit. It usually takes me a good 10 minutes to prepare all of my supplements for the day but that time is getting shorter because I am trying to slowly get off of supplements. I’m taking a ridiculous amount of pills per day and we cannot afford them.
9:30AM – Eat breakfast. Feel nauseous.
10:00AM – Prepare bone broth in the crock pot because it is supposed to help heal your gut.
10:30AM – Prepare kefir water. Kefir is also supposed to help your tummy and my parents sent me some grains to try last week. They are cool because, if you take care of them, they will last forever. More info at www.culturesforhealth.com.
10:45AM – Do dishes. Keeping up with this is essential because we cook absolutely everything.
11:00AM – Wonder if yoga will help me feel less like throwing up so get out the Wii Fit. Wii Fit tells me I’ve lost yet another pound. Internally freak out for a couple seconds and move on to some zen exercises and stretching.
11:20AM – Wonder what I will make with the ground beef for dinner but no energy to figure it out so sit on the porch for my daily Vitamin D therapy, reading the Bible and drinking my kefir water. At the beginning of this journey I decided it was a good time to start reading through the whole Bible again. Today I finished II Chronicles. Even though people with chronic diseases especially need more Vitamin D, I have to be careful with how much sun I get because, ironically, the sun often makes people with Sjogren’s Syndrome feel very bad.
11:40AM – Shower, for which I have hand-made all my hygiene products due to my reactions to all chemicals. Try on every pair of shorts and realize that, although almost every pair was too small last year, every pair is now too big so throw them in my ever-growing yard sale pile, saddened that they were pretty much never worn. Try to wear the only pair of shorts that fit but realize that, even though I have hung them out on the porch for hours, washed them FIVE TIMES and soaked them in vinegar, they STILL smell like “new clothes” and I know that if I wear them, I will react to the smell/chemicals. Throw them in the wash for the SIXTH time, this time on soak cycle with tons of vinegar and soap.
12:30PM – Realize it’s already time for me to think about food again. Prepare a chicken caesar salad with homemade dressing for which we had to order fish sauce online because every other kind of fish sauce has additives and sugar. STOP PUTTING CRAP IN MY FOOD, PEOPLE!!
1:00PM – Know that if I finally sit down, June will ask to go out. Think I can make it to the mailbox without throwing up, so take June on another walk.
1:15PM – Sit down to start this blog.
2:00PM – Since the rest of the day hasn’t happened yet, I will tell you about yesterday. Went to Fresh Market for their Tuesday grass-fed beef and free-range chicken sale.
2:30PM – Went to Walmart (I know, gross) because I thought they might have the specific kind of strainer I needed for my kefir grains.
3:00PM – I am fading fast but know that if I don’t go today, I will have to force myself to go tomorrow and who knows how I will feel tomorrow so I went to Ingles to do the rest of our grocery shopping.
3:30PM – Put groceries away. Walk June.
4:00PM – Start preparing dinner. Yesterday’s dinner was herbed chicken with mayo-less coleslaw.
5:00PM – Eat dinner. Feel nauseous for the entire rest of the evening.
6:00PM – Figure out what meat we will have tomorrow and get it out of the freezer. Make sausage for tomorrow’s breakfast. Make caesar dressing for tomorrow’s lunch.
7:30PM – Finally have a moment to spend with my husband.
8:00PM – Walk June.
9:00PM – Take all my bedtime supplements, prepare my pre-breakfast supplements for tomorrow, fill up my water for the billionth time and head to bed.

As you can see, my life revolves around food and doing things for myself that hopefully make me feel less nauseous. Taking care of yourself is truly a full-time job, though unpaid, of course. ** I honestly hate it. ** When I went into Social Work, I dedicated my life to the care of others, and now I am completely wrapped up in what it takes to keep myself alive for another day. I forgot to mention that at least 500 times a day I have thoughts like, “I can’t believe how good I’m feeling” to 5 minutes later, “I feel so sick and am apparently never going to get better. Ever“. Irrational? Maybe, but that’s what chronic illness does to your mind.

So how are we doing with the Autoimmune Protocol lifestyle?

This is our 21st day on the diet. If I really think hard, I can usually see some improvements in my overall well-being. My mom reminded me the other day that the simple fact that I have been able to attend church lately is proof that I am feeling a little better. I am truly grateful. But then there are other times, such as the other night when I was crying in migraine pain, or most of the time since then, wondering if my liver is just going to explode out of me because of the pain. I just have to take a moment to say how ironic it is that someone who can count the number of alcoholic drinks she has had in her life on one hand should have such a problem with her liver. It’s really not fair, and I should have just partied it up! Ha! Life’s insanity can be so much fun.

New favorite things:

Kale, fried with olive oil and mineral salt.
Grapefruits – I seriously cannot get enough of these things right now.
Homemade mineral salt and vinegar sweet potato chips.
Spiralizer – My parents sent us an incredibly cool gadget that makes veggies into spaghetti or chips and we think it’s the greatest thing ever!

Do I miss the eliminated food? Not really. It’s actually pretty amazing. Occasionally, if we see something on TV like pizza or ice cream we will say something like, “that looks good”, but the only thing that I still crave like none other is coffee. Honestly, I’ve either been too sick to crave or I just don’t care about all the other stuff anymore.

Gratitude. I am truly grateful for the support I have in my husband, who is willing to try new things with me. I am grateful to my family and friends for their support and occasional ear when I need to just explode all over someone. *Shout out to the Roommie and Jason, who let me be honest, upset, and sometimes downright mean!* I am grateful that God continues to take care of our terrifying financial situation. I am grateful each day for further insight into my body. Most people don’t get to be so connected to their bodies and I am becoming its leading expert moment by moment.

Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your bodies. – 1 Corinthians 6:19-20 (NIV)

Here’s to tomorrow’s blessings!

Love from my pooch and me,

~Karina

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Spending My Life in Grocery Stores

Hey, friends!  I thought it might be time for an update on our AIP diet progress.  Jason and I have now been on the diet for ten days.

What have we been eating?

Chicken, beef, vegetables, herbs and fruit.  That’s pretty much it.  I cannot say that we have particularly loved anything we have put in our mouths but that’s not what’s most important anymore.  We have found a few recipes that we have actually enjoyed.  The first is Chicken, Onion, and Kale Stuffed Sweet Potatoes.  We tweaked this recipe by switching the pork for chicken and leaving out the cinnamon, apples and bacon because the only ‘legal’ bacon in AIP is uncured organic (basically made out of gold and/or diamonds).  I did set a potholder on fire cooking this dish, but there are usually some casualties when I attempt to cook.  Here it is, next to some mayo-less coleslaw made by Jason.

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The other recipe we have made twice is this Creamy Garlic Mushroom recipe here, leaving out the pepper because nightshades are ‘illegal’ on AIP.  These are so good that I think we will keep them around as a staple!  Here they are, along with some incredibly tough steak and more kale.IMG_20160404_173729358

We have struggled to get enough protein and good fats in our diet but we are getting better.  Breakfast is difficult because Jason never ate breakfast before, and without eggs or cured meats, breakfast protein is minimal.  I actually ate leftover meatballs for breakfast yesterday.  Desperate times call for desperate measures.  We have been eating way too much fruit because it tastes good, but that’s too much sugar so we have to cut back. We have also cheated just a bit.  I have eaten some pumpkin seeds for a very necessary health reason and Jason has eaten some nuts and seeds to try and get more good fats.  He hates avocados and they are one of the only sources of good fat (aka: brain food) in this diet.  We are learning, and giving ourselves some grace when needed.

How do we feel?

I started the diet very, very sick, which could be a blessing in disguise because I haven’t really craved anything until now.  The other day I walked into Fresh Market and smelled the most heavenly smell…..COFFEE.  I WANT COFFEE NOW.  I wanted coffee yesterday, I want coffee today, I imagine I will want coffee tomorrow. I’m not sure how much longer I can fend off that craving, even though I haven’t had any in about two weeks.  Again, grace may be needed but I want this diet to work so cheating is a pretty big deal.  

Do I feel healthier?  Not really.  I’ve lost another five pounds, which puts me smaller than I was when I was 16 years old.  How do I remember that?  Well, I was about to go on a mission trip to Haiti and they needed to know my weight for the prop plane.  I don’t care how thin she is, you do not ask a teenage girl how much she weighs in front of a room full of people and on a conference call.  Anyway, I feel better than last week but I’m not sure if it’s the diet or just a lull.  When I asked Jason how he feels he just said “hungry”.  He has lost 11 pounds and I am very proud of him!

Where do I spend my days?

GROCERY STORES.  I live and breathe them now, which is pretty much my worst nightmare.  I have gone to the grocery store no less than FOUR times this week.

Yesterday, I was in the checkout line behind an obvious college student.  There was not a single healthy, or even unprocessed item in his basket.  Easy Mac, Hot Pockets, Candy Bars, Chips.  I was a mixture of jealous and revolted.  Part of me wanted to say, “sit down next to me, child, while I tell you the story of my life.”  Oh dear ones, I’m not sure whether to tell you to live it up while you can or to stop poisoning your body right now!  I would give anything, ANYTHING to go back in time and stop hurting my body with an unbelievable amount of processed ‘food’.  His basket made me truly sad.

Where Do I Get Support?

I reached out for support in an AIP group online.  Several people have been encouraging and have helped me come up with ways to gain or maintain weight on AIP.  However, there were a couple real downers who meant well but discouraged me with their words.  I have felt kind of low ever since I spoke with them, which does not help progress.  I have to believe that this lifestyle will help me or there really is no hope left for me to get better. I’ve also been ‘blah’ because I finally applied for disability yesterday.  It’s laughable because I know for a fact that I will be denied.  Too many others who have far more recognizable diseases do not get disability but our debt situation has left me no choice.

What I have learned from this experience thus far is that you have to have GOOD support and get rid of the downers.  The downers take more of a toll than you may realize.  My husband is my biggest support and blessing.  It certainly helps to have someone changing their lifestyle with me!  Thanks to everyone for all their prayers and support!

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The Day the Music Returned

Anger

I’m just gonna go ahead and say it.  God and I haven’t been, as the song says, “the best of homies” lately.  He is, was, and will always be my God, but I guess I have been angry with him.  I’ve tried not to be, and I’ve told myself I’m not, but sometimes you just can’t fight the feelings.  Anger happens.  And I know that God is ok with questions.  He’s ok with anger as long as we act on that anger in the proper way.  Day after day of fighting my body often leads me to believe that he’s not helping me fight.  I’m so tired.  So very tired.  And I’m losing hope.

Silence

God’s voice has been fairly silent in recent months, perhaps, if I admit, years.  But really, I’m not sure why I would expect him to speak to me, since I’ve been pretty silent myself.  Many of my prayers have been one-liners, which led to my mind wandering to the worries and fears that serious illness brings.  I’ve tried to give those fears to him, but when I don’t see him working, my mind wanders again.  Oh, my weary soul.  I feel like the Disciples, who couldn’t stay awake long enough to keep watch for Jesus.  The spirit is willing, or at least it used to be willing, but the flesh is so very weak.

Peace

A couple days ago I was driving down the road, having another one-sided conversation with God, which was mainly me saying for the millionth time, “What do you want me to do?  I don’t understand.  Tell me what to do!”  I finally stopped to listen and I swear I heard him say, “Just hold on.  I’m going to do something big.”  God, telling me to get out of his way, so that he can act.  I immediately had a small sense of peace, a peace that I have not had in such a long time.  A peace that passes understanding.

Hope

In the past, I felt God’s presence when he would give me his songs but, as I said before, the silence has been deafening.  I could no longer hear his music and, therefore, could not write it anymore.  He used to give me his songs freely and I would constantly write and play them.  But I just couldn’t find him anymore.  Until today.  The day the music returned.  I sang just one line before collapsing in tears.  You haven’t left me, God!  You’re still here!  After I gathered myself, he gave me the rest of the song.  Here it is:

Wash Over Me

So many days since I’ve heard your voice

So many nights with tears in my eyes
Longing for just one sweet melody
that tells me you’re still here
Wash over me
Fill me and make me clean
Wash over me
And sing me your songs again
God, I’m so weary from fighting each day
When will you take this burden away?
Sing over me a song in the night
that tells me the battle is over
Wash over me
Fill me and make me clean
Wash over me
And sing me your songs again
Then just one note is heard on the wind
Filling my heart with hope once again
God, you’ve been there in my heart all along
Even when I lost your song
Wash over me
Fill me and make me clean
Wash over me
And sing me your songs again
Wash over me
And I’ll sing your songs once again.
And just in case I haven’t been quite vulnerable enough, you can listen to me squeak out the song here.  The shakiness in my voice could be emotion, or the incredible pain in my unused guitar fingers.  Also, picking is not my strong suit, hence the constant staring at my guitar.  Strumming is my game, but not what this song ordered.
So, there you have it.  My heart split wide open for all the world to see.  Sometimes I wonder why I do this to myself.  But I love you all too much to tell you anything less than the truth.  May you find God’s peace and hope in each moment.
Love and blessings,
~Karina
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The Start of Something New

After countless doctor visits, diet changes, supplements and hours of research – all of which had to happen during the rare moments when I wasn’t writhing in migraine pain, covering my eyes in a spinning room, or lying on the bathroom floor – I am still just as miserable as ever.  Nothing has made me feel better for more than eight days, and that was a rare week of bliss.  I usually feel bad every second of every day and I’m tired of it!

Hoping Beyond All Hope

Therefore, I’ve made the decision to start the Autoimmune Protocol (AIP) diet.  You can look here for more information.  Lots of research shortened, I will be eating no grains, no refined sugar, very limited other sugar (honey, maple syrup), no dairy, no nuts, no seeds (including coffee and chocolate – GASP!), no eggs, no legumes (i.e. beans), no nightshades (tomatoes, potatoes, eggplants, peppers), no spices made from nightshades or seeds (i.e. pepper or cumin), no thickeners or gums and no NSAIDS for at least 30 days.  The first phase of the diet is meant to calm any inflammation and eliminate most foods that can cause flares.  It is a gut-healing process, since many autoimmune diseases are caused by leaky gut syndrome.  Before you think I’m crazy, please, please read this incredibly informative article about Leaky Gut Syndrome.  Really, this is an amazing, easy-to-understand article by Steve Wright.

The next phases of the diet slowly add back in one food at a time, waiting at least five days before adding back another food and paying very close attention to how it makes your body feel.  If it triggers a response, I will not eat that food again.  It is a long process and huge commitment, but completely worth it if it’s the thing that finally gives me some relief.

I told my husband that I could not cook two dinners so he would either have to cook for himself or at least eat the dinners I cook.  Being the incredibly supportive man that he is, and needing to get healthier himself, he has decided to go on the diet with me.  So here we go, embarking on a difficult journey…

Starting right now, we begin eating to live rather than living to eat.

Here is a picture of our first produce-filled shopping cart:

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We are hopeful that eating the way God originally created us to eat will calm whatever evil is inside of me.  To give others on the AIP diet some meal ideas I may be posting a few meals here and there.  This was our first AIP meal.  It was pretty good.  It did not have much flavor but I can play with that.  Cilantro Lime Chicken with Zucchini Noodles:

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One of the big problems may be that I get hungry in between meals and there’s not much to snack on in this diet.  I’m going to have to get very creative, and I am not a fan of cooking.  My next AIP meal was Coconut “Yogurt” with Berries and Toasted Cinnamon Coconut:

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I did not know where to buy probiotic powder so that I could “grow” my own yogurt so I thought I could leave it out.  I was wrong.  After hours in the fridge it was still soup so I froze it and basically had coconut ice cream for breakfast.  Live and learn.

How I am feeling thus far:  Tremendously Horrible. I’ve only had a few AIP meals so I don’t expect it to be a miracle cure right away.  I have been so dizzy from a bacteria in my mastoids (aka: ear infection) that I can barely stand sometimes.  I am having terrible stomach problems, headaches and awful brain fog.  My parotids (salivary glands) are swollen and I have incredibly itchy patches of skin popping up on my fingers, eyelids and right ear.  I am hoping that this new adventure will set me back on my feet again.  This post has gotten longer than I thought so I will sign off with a request for all of the prayers we can get.  I need to learn to cook new things but I have no energy at all.  I also usually ruin new recipes but we cannot afford to do that because we can’t just go out and get something else to eat.  I don’t want to think about continuing throughout the rest of my life feeling this awful so I am trying to trust.

Three times I pleaded with the Lord to take it away from me.  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. – 2 Corinthians 12:8-9 (NIV)

Love and blessings to you, friends,

~Karina

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The Full Extent of His Love

Holy Week blessings to all of you!

This is my favorite week of the year.  It is incredibly reflective, meaningful, and usually warmer than Christmas!  I think Resurrection Sunday is my favorite holiday.  But I love the reflection leading up to Sunday during Holy Week.

Today is Maundy Thursday.  Growing up, I had never even heard that term, but it came to mean so much to me as I learned more about it.  Today is the day we reflect on the last moments Jesus spent with his Disciples before being arrested.

It was just before the Passover Feast.  Jesus knew that the time had come for him to leave this world and go to the Father. Having loved his own who were in the world, he now showed them the full extent of his love. – John 13:1 (NIV)

The full extent of his love.  What a beautiful phrase.  Of course we know that the full extent of Jesus’ love was his willingness to die for us.  But I also think it is purposeful that the phrase “full extent of his love” appears just before Jesus washed the disciples’ feet.  Foot-washing was the task of servants.  How beautiful that the king of kings set the ultimate example of service by humbling himself, kneeling on the ground, and washing dirty feet.  He could have just left it at that – an example.  But he knows how simple and full of excuses we can be, so he specifically tells us what we are to do.  He tells us to follow his example, saying:

“You call me ‘Teacher’ and ‘Lord’, and rightly so, for that is what I am.  Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet.  I have set you an example that you should do as I have done for you.” – John 13:13-15 (NIV)

What?!  Jesus, you want me to was HER feet?  She’s so dirty!  And HIS?  Gross, he smells!  Do you know the terrible things he has done?! Let’s face it.  Every single one of us has the filth of this world on us in one way or another.  Jesus lovingly washes it off.  He showed the ultimate humility in the full extent of his love.  How can we dare to think we are ‘above’ serving those we see as dirty or sinful, when Jesus himself washed the feet of sinners?

Tomorrow is Good Friday, the day we remember Jesus’ ultimate sacrifice – his own life.  Good Friday services were also never a part of my childhood.  For whatever reason, they were not commonplace in our area.  During college, some friends and I decided to attend all of the Holy services.  We were so determined that we actually pushed my friend’s car out of its parking spot since none of us knew how to drive a stick shift, but that’s another story!  The Friday service was called the Service of Darkness.  And that it was.  It was very dark, except for a couple candles.  And it was silent.  In the next moment the silence was broken by hand bells softly playing “Were you There when They Crucified My Lord?”  Once again, I was mesmerized by the beauty and the majesty of that quiet moment.  It is times like these during which the holiness is almost tangible.  I’m struggling to put it into words.  But I think that’s the point.  Sometimes the Holy cannot be put into words.  But you cannot help but recognize it.  The Holy is also present during loud Hosannas, which we will hear on Resurrection Sunday, but sometimes we need the silence to connect with God on a level deep within ourselves.

Be still and know that I am God. – Psalm 46:10 (NIV).

This Holy season, be still and reflect on the full extent of Christ’s love.  Remember that he calls us to follow his example.  Be blessed into silence, awe, and wonder.  And sing your loud Hallelujah’s on Sunday!

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Triumphs and Setbacks

I’ve had an incredible, note-worthy week.

Most remarkably – Last Thursday, my nutritionist gave me a miracle supplement.  It’s disgusting because I have to suck the coating off of the pills to stimulate bile, but I would suck on those bad boys until the end of forever if they make me feel this good.  My stomach immediately got better and I have had seven straight days with NO TUMMY TROUBLES.  I have gained almost five pounds in one week.  For real.  It’s the birthday cake, friends.  Just goes to show how starved my poor little body has been.  I’m not naive enough to think this blessed bliss will last forever, but I am enjoying every precious second and morsel of food!  Food, glorious food!!

Close second – My sweet friend took pity on my poor, over-sized wardrobe and gave me a birthday gift card.  I cannot tell you the last time I actually bought NEW clothes.  If I start losing my pants due to the weight loss, I will go to a thrift store.  Buying new clothes was a different experience for me.  At first I was sort of intimidated, but by the end I was singing Lorrie Morgan’s, “I’m Looking for Something in Red” at the top of my lungs… or maybe just in my head, but still.  A full belly and clothes that fit.  What more could a girl want?

Setbacks – There have been setbacks, for sure.  If it’s not my stomach, it’s my swollen, painful parotid (salivary) glands.  I woke up Sunday morning with some massive ones and had to go to First Assist for steroids.  I despise medicine and hate how jittery it has made me feel, but I’m not in as much pain.  It’s often a trade-off with me.  Can I tolerate the horrible symptoms of my disease more than I can tolerate potential side-effects of a medication?  Real-life gambling, folks.  Jason probably wants the steroids finished so I quit jabbering so much.  Talking and eating.  That’s what I’ve done this week and it has been magical!

BIG NEWS

Today was not especially fun.  I had two follow-ups from the biopsy I had of my salivary glands last week.  I spent most of my day listening to the doors of doctors’ offices screech like banshees, but I digress.  I swear I will bring them some oil next time.

First of all, my lip is healing fine for the most part.  All of my sutures fell out long before they were supposed to, so I have a gaping hole in my lip.  See, I’m always special. But it’s slowly healing and just feels like a very annoying canker sore. The results of the biopsy definitely support Sjogren’s.  So, there you have it folks.  After years of trying to convince doctors that there is ‘something’ wrong with me, I finally have the official diagnosis of Sjogren’s Syndrome.  

Sjogren’s Syndrome is an Autoimmune Disease. As with most Autoimmune Diseases, the body mistakes its own cells as something to fight off and starts attacking itself.  I love the meme that I will censor slightly that says –

“Autoimmune Disease – Because the Only Thing Tough Enough to Kick My Butt is Me!”

In the case of Sjogren’s Syndrome, the body attacks all of its moisture-producing glands. My eyes are so dry that I can no longer wear my contacts and I am so thirsty ALL THE TIME.  My parotid (salivary) tubes get dry and form little stones and when bacteria gets behind those stones, the glands swell up and become extremely painful.  It also can affect many other areas of the body. I seem to have a fairly rare, but not undocumented connection to the stomach and random food intolerances.  My favorite quote from a fellow ‘Sjogie’ thus far is, “I hate getting invited to anyone’s house for meals because I have no idea what I will be able to eat that day.”  True, that.  It is a gamble putting anything in my mouth at any moment of any day.  The Rheumatologist is not entirely convinced that Sjogren’s is causing my stomach issues.  He says it might be, but it’s very difficult to prove that and fix it.  So, for now he gave me some info to read on a medication that would basically make my glands produce more moisture, but may make my stomach worse.  It really has to do with my comfort level in trying new medicines, and I’m so anti-drug, it scares the daylights out of me.  For now I’m just going with the flow and enjoying my tummy relief while it lasts.

1 Corinthians 13:12-13 (NIV) – “Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.  And now these three remain: faith, hope and love.  But the greatest of these is love.”

This week I have experienced faith in the knowledge that God has control of my triumphs and setbacks.  I have experienced some hope in finally receiving a diagnosis.  I have experienced love in a kind friend and outpouring of prayers.  I have really felt ‘known’ this week, by the loved ones who know exactly what I need when I need it, by the doctors who finally recognize a problem, and by the relief of some of my symptoms.  If this is “but a poor reflection”, I truly cannot wait to see God face to face and be FULLY known.  Oh, how glorious!

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