Wednesday, April 30, 2014

up/down

Down: 
a. I have flu-like symptoms due to Herzheimer's reaction and, well, you know how the flu is. This plus everything else is a three layer cake of lethal that has knocked me flat out.
b. All areas that had almost finished healing (shoulders, back, chest, abdomen, thighs, back of R knee, arms, wrists, hands) from eczema are either back to their original state or worse.
c. A third fungi has apparently taken over my system.
(Uncertain why, but the theory is that when we got rid of the others this one, dormant in tissue, decided to 'move in'.
hlkjsafdsafhlkj. ! ! ! Disgusting x a billion.)
d. I am fully cationic, i.e. my system is extremely acidic.
I say "fully" cationic, because February testing revealed my system was cationic/anionic...some parts of were too acidic while others were too alkaline. Current ph is 5.8 (ideal body ph is slightly alkaline, at ~7.4 ph).
e. Sadly, we had to delay our departure date. No CA vacation for us, at least this time around. (Preview of an "Up" --> but we are still going to be there for the major family events, which is fantastic).

Up: 
a. As of yesterday (Tuesday), we have the results from one of the tests (not the blood tests, but still). Incredibly glad to have them!
b. Part of the results --> New diet to alkalize my system...and I like it way better, even though it is just as restrictive in many ways. Things like raw milk and raspberries are okay to eat now, even though old favorites like maple syrup, eggs (just kidding! This is apparently [thankfully!] temporary. In a month I can eat eggs! They are an acidifying food, but no where near as bad as beef, so just gotta wait until I am not so cationic, and then we will likely be able to reintroduce), and beef are off the table. :)
c. I am consistently able to open my eyes without difficulty, despite the fact that they are still swollen. This is a tremendous relief.
d. The eczema no longer impedes my ability to eat.
e. Today I did a lot of standing and walking around as mom and I did some errands to prepare for this new diet...and I am pooped but not crashing, as has been the pattern in the past. SO happy about this.
f. Found a clinic that does pre-warming / has the proper incubator so the final blood test (for this first round of testing) can be completed. Whoop!
g. My amazing mom blessed me by hanging out with me and discovering MOM's Organic Market with me when I wasn't permitted to take the blood test that was scheduled for today. I loved spending time with her. Cannot thank you enough, Mom. (You should all find good reasons to visit her, by the way. She is going to make a strawberry-rhubarb pie...and you know about my mother's magical abilities with pie).
h. Despite having to cancel our CA vacation, I'm not anxious or depressed. We're still going out for Sarah's graduation, just not when we hoped we would. It's out of our control, so it is both practical and of strategic interest to be at peace...but beyond that, I just am at peace.

While it is still true nothing sounds better than a few solid days with beautiful surroundings, with no one but my handsome husband and nothing to interfere in our plans... it's not my hope or source of joy. Are you rolling your eyeballs? Before you lift a scoffing eyebrow, realize that I think the day has been fancy if I go to the grocery store! Easter weekend has been the only weekend in ages that wasn't spent doing damage control for a new mystery surge as we watched all of our progress disappear. Just the idea of a vacation with your most treasured friend can easily become an idol when you are a shut-in. In retrospect, it had become that for me for a brief amount of time. Praise the Lord for His goodness and generous mercy in both shaking me free of that idol and for giving me peace when the opportunity for precious time with Tom was taken away.

For those of you who understand why this would be saddening, don't feel bad for me. I actually feel worse for Tom. I tried to convince him to go on without me so he could spend time with family and friends but, of course, he would have none of it, in the kindest way possible. He has had made so many sacrifices already. I hoped this would not be one of them. Thinking about all of the good (and just plain normal) things he has given up or missed---cheerfully, with love, for the glory of God, literally without uttering a single complaint---because of me makes my heart ache. (Lord, please grant Tom the desires of his heart, for Your name's sake). However, we strongly doubt that my condition is permanent, and while disappointing and a little sad, there will be other trips and opportunities...hey, while our time in CA will be a rushed and busy few days, they will be full of dear-ones. I can't wait to be spending time with our family! Eeep! <--(utilizing a non-word to express my intense level of excited anticipation! And excitement! Because I am excited. Did I mention I am excited about seeing our family??! Bah!)

Oh, and it will be warm. Poo on you, rainy Virginia.


Monday, April 28, 2014

hang loose




1. Many things (well, sinful actions) arguably stem from issues of control*. The range is great; from anger to passive aggressiveness, for example. Personally, I generally internalize it and become an extremely stressed and stressful person, leading to other things (e.g. subdued panic, being a terrible wife/sister/daughter, and eczema flare-ups, haha). Through this whole saga, especially as the past three days have been terrifyingly bad, I have been realizing all of the areas over which I have consciously and subconsciously tried to exert control (the list is becoming impossibly long). It is God's grace that has revealed this to me through these distressing circumstances and, to be honest, I am rejoicing in it. I'm not a fan of the circumstances by any stretch, but I am so glad that God is graciously, mercifully, and lovingly sanctifying me! A gift of mercy.

2. I'm in pretty terrible shape. Not going to going to make it long but... it's gnarly. And gross. And miserable. And painful. But I'm relaxed (whatwhat?!). We might have to delay our trip to CA and cancel our vacation but... I'm okay. Ask me again if we actually have to do those things, but for now, I'm relaxed and peaceful. Praise the Lord for His kindness in this. And please petition Him for my healing, that He may be glorified through my physical wholeness.


*"Arguably" used to make room for other theories / beliefs, including pride, nature v nuture, greed, being a first born, selfishness, 'because I love you', and IBS.

rely not on ourselves

For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too. If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort. For we do not want you to be ignorant, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many. (2 Corinthians 1:5-11 ESV)


Saturday, April 26, 2014

downhill

Can't really move; can only open right eye a little; swollen, oozing, extreme pain, etc. Worst day in a while. No idea why. Prayers would be magnificent. 

Friday, April 25, 2014

flopsy

Becca sent me this and it is a brilliant summary of how I feel all the time. I showed it to my siblings today and we all determined it was precious. So maybe I really just feel precious and not pooped. Or precious AND pooped. (Mostly just pooped). At any rate, thanks, Becca!

"does that sound okay, ma'am?"

All of the recent medical bills have added up. Insurance is chipping in on those bloody blood tests, but did you know that they cost ~5k?! For the 21 vials of my blood they took on Friday?! That's over $220 per vial! Oi.

Last year I was teed by a truck, and by God's grace I only required some intense but brief chiropractic care. The fellow's insurance offered to pay the medical expenses, but it seemed that they had dropped the ball until... I received a call from them (completely unexpectedly) to inform me that they would like to send a check for the chiropractic care and would it be fine if they added an additional $1,000 for pain and suffering? (The cheeker was definitely fishing for a reaction). I played it cool, because that's what I do, but Tom surmised from all the faces I was making at him that something was up.

We had prayed for the chiropractic bills to be paid in the past...but hadn't thought about it recently, assuming it would never happen. It has been over a year, after all. To receive not just the answer to that prayer, but the blessing of an unexpected thousand dollars... Wow. We are quite thankful...and quite surprised. An answer to prayer that has definitely caught us off guard. 



steady as she goes

The title was originally "chug chug", inspired by the steadiness of a train, but then I realized that wasn't what it would convey to everyone else. Shhhaved it! 

Tl;dr: 
Spiritually: Psalm 27:13 --> Psalm 34. 

Health: ebbs and flows; sometimes I'm good, sometimes I'm flat-out and can't get out of bed most of the day. It's like sticking your hand in the Harry Potter jelly jean mix; you could get watermelon or earwax or candy-floss or vomit -- whee, what an adventure. 


_____________________________________________________________

As I mentioned before, Sat-Thursday of last week were horrendous... then Friday-Wednesday (well, I am stretching this a little, as Wednesday was terrible until 4pm, buuut) were fantastic, which was amazing. We loved it. I loved it. It was incredible to be able to attend the Easter service without having to sit down during the singing. We were kind of stunned (pleasantly, of course). 

Today (Thursday), is bad. My face and neck have worsened by a good bit. My energy levels are eh, and yes, they always, always are, but you feel it so much more when the rest of you is blerp. AND, the microbiologist who is processing the test I sent in a wee bit ago still hasn't been able to get to it... which isn't a big deal, but a smidge disappointing nonetheless, since it was supposed to be done last Friday. Oh well! Hopefully tomorrow it will be finished. : ) 

I have mentioned that this whole process has revealed my desire for control, and many have been sweetly praying with us that I would be given the grace to relinquish that. It creates endless anxiety (bearing nothing but bitter fruit). 

Truly, that prayer has been answered. Today was proof of that, at least to me. After such a crazy long streak of excellent days (SIX days! SIX!) it was disappointing to be greeted by such a huge resurgence when I awoke. But, that was it; I was disappointed, but not discouraged, and I surprisingly didn't feel any anxiety (besides that one time I applied oregano oil on my oozing face*... desperate times, desperate measures, desperately dumb #ProverbsByChloe). 

All that to say... grace has been poured out abundantly for me. Prayers have been answered so generously. I am amazed by God's goodness in providing those good days and by shoring me up with His perfect peace when they ended. To say that I am comforted and amazed is an understatement. If I was to be completely transparent, I would have to admit that the mere thought of God's grace during these past months makes me teary. He has provided us with all that we needed. Praise be to the God of our salvation, who works wonders and is holy and just and righteous in all things! 

While the face is oozing eczema, let the heart ooze with joy. #ProverbsByChloe 

#AndNoOneWasAbleToMakeEyeContactWithHerAgain



*For the record, after 20 minutes of terrifying pain, it was all good! And my face was better for it. Or at least that's what I decided. #DecisionsByChloe

Wednesday, April 23, 2014

ice cream?!

To the pounds that I have lost due to the change in my diet: see you soon! 

Recipe (be sure to get certified GMO-free ingredients! or look forward to this *warning:graphic/super gross & sad) + stick it in the freezer and stir every thirty minutes or so. Or forget about it and mix it up as it defrosts. I have done both. 



Tuesday, April 22, 2014

cup runneth over

A tale of two amazing mothers... 

My second mom (Tom's), when she heard that the earliest that the doctor could see us was over two weeks away, made her own phone call to the doc based on the promoting of the Holy Spirit. She just so happened to secure an appointment that was only two days away. Yes, really. We all briefly acknowledged feeling like a cool part of the mofia (so bad apple -- earlier doctors appointments! Yeah, my mom made a call. Growl/fist slam into palm), and rejoiced. Days later, we were still randomly commenting to each other about how cool it was that God provided for us in that way through Debbie. 

And then, my first mom. Oh my goodness. My mother has been so generous. (As has my kind stud-brother Mitch, as you will quickly see). 

Two Fridays ago, she and Mitch came over to set up what I was told was the rest of my birthday present? Or was it Christmas present?! My mind was blown either way... It was a beautiful porch. Chairs, this ridiculously rad green foofy carpet-ish stuff, a side "table", a pot of pansies and parsley... We have used it every time the weather has been vaguely nice. 

She came over to walk with me on Tuesday, even though it was cold and wet outside. 

On Wednesday, because I wasn't safe to drive, she brought me with her to Reston so we could both do our WFM/TJs errands together. And, when I started having an eczema attack in TJs that was initially easy to control and then began to escalate once we were on the road to my home... She and Mitch carried my groceries up four flights of stairs, and cleaned my house while I crashed in bed (my memory of that part of the day is weirdly spotty/foggy because I could barely even think due to the intensity of the attack... Quite literally "out of it"). That is the day that I mentioned in my last update. I still can't believe that she, Mitch, and Ginny did all that for me while I was in bed dealing with the attack. When I woke up at midnight to take meds I was flabbergasted. My eczema had gone from ugh to horrendous in 90 minutes earlier and had worsened since then. I may have been a mess, but my house was not! It was so clean. And I loved it! It made such a difference. They blessed me beyond words. 


On Friday, she offered to come over to help me with the spring cleaning that had been started and stopped a thousand times because of me (blegh...shoutout to my incredibly chill and patient husband for being willing to live with our clean clothes in bins during the never-ending 'in-between'. He never complained and helped me bail out each time. A champ in every regard). She and Mitch came over and the three of us conquered it once and for all. Thank you both so much. You are crazy to help me out in this way (cleaning the sick house? Ew), but I am so glad of it. 

So yeah, there's my humble brag. I have great moms. 

Monday, April 21, 2014

strangely addictive cookies

They were named by Tom, who partook of his first cookie to be polite...but he was promptly hooked, much to his surprise. We love these! And they are a sinch to whip up. 

Modified from My Whole Food Life. 

1 c. nut butter (we used almond)
5 Tblsp maple syrup 
1.5 Tblsp cocoa powder 
1/4 tsp baking powder
1/8 tsp coconut oil 

Oven: 350* F

Step 1: blend all ingredients together in food processor. 

Step 2: turn the mixture into balls and put onto lines baking pan. 

Step 3: bake for 10 minutes. 

An addictively easy process for an addictively delicious (and vegan, Paleo, gluten-free, candida-safe (assuming no peanut butter), sugar-free) cookies. Magic. 




Thursday, April 17, 2014

praise for / pray for

Points of praise
1. My hands are not itchy 24/7. They aren't healed by any stretch, but they are no longer point of constant anguish. Your prayers are being tangibly answered!

2. The fact that my whole body just starts shutting down whenever I have an eczema attack is actually helping a different problem -- sleep. 

Today, instead of trying to manage it by the myriad of coping mechanisms I've tried / developed, I just went to bed. It didn't take but five minutes for me to fall asleep initially. I slept lightly (just because I was at the beginning of an eczema attack) for a solid thirty minutes before my alarm went off and I tried to get up to teach... but my eyes were so swollen and my body shaking so badly / the pain was so great I could barely talk or type so I had to bail and went back to bed. I slept off and on (partly because my eyes quickly swelled shut and I had no choice in the matter - ha!) from 2pm to 11:45PM -- and I only got up because I decided I needed to lay in bed to see if the swelling would go down so I could get up and eat in order to take pills...which it did. They are still swollen but I can see enough to get around, so that is pretty great!

3. Even though I'm getting worse, I'm less anxious about it and my spirit is settled. That is incredible. Seeing Isaiah 26:3 so clearly manifested is amazing. 

4. MOMS! I mean, really. Both the biological and in-law kind. Moms are amazing. So amazing, they will be getting their own post. You guys are crazy wonderful. 

5. My dear husband. He doesn't complain. He is beyond patient. He tells me I am beautiful, even. Taking care of a sick spouse is one thing... taking care of a spouse that has been sick at varying levels for six months with no end in sight is another. That God would let me be his wife overwhelms me. Grace upon grace. I deserve nothing good, least of all salvation, and next to that, my kind man. 








Points for prayer
1. No need to expand on this too much farther (since I mentioned it under praise #2), but I have definitely gotten worse and it is frustrating. This has impacted everything, including my ability to drive (not that I am up to going anywhere most of the time, but you know). Besides the obvious issue (i.e. I can't open my eyes) the eczema on my neck prevents a level of mobility that is necessary to drive safely. It improved a little after my eczema-attack induce uber-nap, so hopefully that will switch to be a point of praise in the next day or two. :) 

2. We are going to try a new doctor tomorrow. We are praying that the doctor would be able to quickly discern with divinely-provided wisdom what to do. That will probably include blood tests on my part, which...I am kind of dreading it. It's new territory (and my number one reason pregnancy stinks--obviously I have never been pregnant, haha). But hey, if I can do a colonic without passing out or vomiting, I can get my blood slurped out of my veins with a large metal stick. (I am being facetious. I am SO grateful that these facilities are close by and available to us so easily. Living in a first world country is such a blessing). 

3. As always, pray for Tom. This isn't bad news... it is merely a point of prayer. Being a caretaker isn't a piece of cake. He is teleworking tomorrow until he has to take me to the doctor. When we get back home he'll continue teleworking...and then he'll have to help me with the evening routine. :( It's rough! He is a treasure with which I cannot believe I have been gifted. I don't want him to be neglected in the midst of everything. My prayer for him is that he would be healthy (in every way), at peace, happy at / able to find joy in work, be given opportunities to see his family more often, thriving spiritual regardless of circumstances, and for blessings to be poured out on him in abundance. The prayer of a righteous man availeth much, and I confident that most of the individuals reading are far more righteous than I (by leaps and bounds)...so I hope that you remember him in your prayers, as well.



Sunday, April 13, 2014

no rest, no relief

I have been trying to sleep since midnight. It is 3pm and I have gotten about 2.5 hours of sleep. The reason is the recent spread of eczema to my palms and the bottom of my feet (no longer just my heels). This is very discouraging. Prayers for healing and relief would be greatly appreciated. 

with everyday pour out my soul
and He will prove His mercy
though life is just a fleeting breath
a sigh too deep to measure
my King has crushed the curse of death
& I am His forever 

O praise Him, Hallelujah 
my delight and my reward
everlasting, never changing 
my Redeemer, my God
Aaron Keyes

For God alone, O my soul, wait in silence, for my hope is from him. He only is my rock and my salvation, my fortress; I shall not be shaken. On God rests my salvation and my glory; my mighty rock, my refuge is God. Trust in him at all times, O people; pour out your heart before him; God is a refuge for us. Selah Those of low estate are but a breath; those of high estate are a delusion; in the balances they go up; they are together lighter than a breath. (Psalm 62:5-9 ESV)


More than life to me!

Pass me not, O gentle Savior--
Hear my humble cry!
While on others Thou art calling
Do not pass me by. 

Let me at a throne of mercy
Find a sweet relief 
Kneeling there in deep contrition--
Help my unbelief

Trusting only in Thy merit
Would I seek Thy face;
Heal my wounded, broken spirit
Save me by Thy grace. 

Thou the spring of all my comfort,
More than life to me! 
Whom have I on earth beside Thee?
Whom in heav'n but Thee? 

Savior, Savior, Hear my humble cry!
While on others Thou art calling, do not pass me by.  


Pass me not, by Fanny Crosby 

Saturday, April 12, 2014

spreading...

As if this morning, the eczema has spread to the palms of my hands and the heels of my feet. I am not going to even try explaining how difficult every task has become overnight. 

Love you all. 

Thursday, April 10, 2014

ruh roh

My circadian rhythm is all wompy-jawed. The eczema keeps me up late, and I have lots of trouble sleeping at night... but once I am able to sleep, I sleep a lot (see previous post). Today I took a nap on purpose (I have been doing it a lot accidentally lately, so this felt very different and was deep because I had given myself 'permission' to do it, so I wasn't bouncing in and out of sleep), and oh man, it was delicious, but I don't think I can do it again (thus it is with naps). It is almost 4AM and I am still awake! Ludicrous. But, tomorrow is a new day; I will correct this problem over the next three days. Challenge accepted!

Monday, April 7, 2014

bah humbug

Currently struggling with fatigue, in ways that are just ridiculous! I can sleep forever. Literally, I could just sleep for 24 hours and wake up only be fed and burped (slightly exaggerating, but still). I walk around the house like a slug. Raising my arms to grab stuff leaves me tired. Sometimes the fatigue is manageable, other times it is an enormous struggle. I got up and was in the process of slogging through the morning routine to get ready for church on Sunday, felt awful, decided I would go anyway, and then realized that would be foolish and didn't. To be completely honest, the fatigue makes me a bit of an unsafe driver at times (not all the time, since I'm just sitting on my behind, but if the fatigue is effecting my focus / is making me incredibly sleepy...). I'll be talking to the doctor about it this week, but if you have any suggestions, I'd appreciate them.

Saturday, April 5, 2014

symptoms: ...nope.

I won't be updating the list of symptoms for a while. Things aren't improving / are digressing and changing and worsening and seeing how little has changed from that first list is currently depressing (although I know it will be a point of encouragement in the future). The eczema attacks are becoming more debilitating and frankly, I am struggling to keep afloat. I am digesting a lot of thoughts and if I think it would be useful to anyone I may share them. But, just FYI. Symptom updates are discontinued until further notice. 

Love you all. 

refuge

And David spoke to the Lord the words of this song on the day when the Lord delivered him from the hand of all his enemies, and from the hand of Saul. He said, "The Lord is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold and my refuge, my savior; you save me from violence. I call upon the Lord, who is worthy to be praised, and I am saved from my enemies. For the waves of death encompassed me, the torrents of destruction assailed me; the cords of Sheol entangled me; the snares of death confronted me. In my distress I called upon the Lord; to my God I called. From his temple he heard my voice, and my cry came to his ears. ..." (2 Samuel 22:1-7 ESV)

David had been granted victory through and by The Lord when he gave this song of deliverance. I have yet to be delivered from my physical distress, but I have been delivered from my spiritual death. Blessed be the name of the Lord! He is worthy of all praise and glory and thanksgiving and honor and beauty and worship. 



Wednesday, April 2, 2014

okra me a river

Easy snack: sautée okra in coconut oil and sprinkle with seasoning. My favorite is curry and garam masala.