Saturday, April 28, 2012

Offer it Up

What a beautiful Saturday morning it is today! I've been up since about 2:30 AM, but I'll not complain. I got some reading and internet cruising done, and the fresh air coming in through my open back door is lovely.

A good morning for a bracing cup of tea!

Well, I went to the doctor again yesterday, and she agrees that since my MRI came back clear we could put off a neurologist until/unless weird neuro stuff starts up again. Meanwhile, I know for a fact now that I do NOT have Lyme Disease. Nor do I have CMV. But I DO have Epstein Barr. No big surprise there. My system (slow, sluggish and beleaguered that it is) just hasn't been able to fight it off yet. So I was right...the mono is still flaring up and affecting my life from time to time.

And so it looks like the three things (or is that four?) that we know about are what are going on: Fibromyalgia, Hashimoto's, Epstein Barr, the copper thing, the and hormones (ya gotta pronounce that like the lady on My Big Fat Greek Weeding, as 'or-mon-ees, just for fun).

So, it's time to start taking medication for the fibromyalgia. I've been diagnosed with it for eight years now, and although I've been on the guaifenesin protocol for many of those years, I was never all that much better. I went off the guai protocol last fall hoping that the Hashimoto's diagnosis was what was really going on...but by now it's clear that's just one piece of the puzzle.

I've changed SO MANY things for the better since last fall: gluten free, grain free, no more sugar, no more starches, no more coffee, lots and lots of good fruits, vegetables, meats when I can get them, etc.

I've seen wee hints of healing here and there. I'm no longer showing any signs of allergy when I eat almonds. So that tells me my gut indeed is healing. My knees don't hurt anymore when I go up and down stairs. That's a blessing, because in three months we'll be moving, Lord willing, to a house with stairs.

Why do I go on and on about my health? heh. Good question. Maybe it's because it is currently defining and proscribing my life. Did I use that word correctly? It's hemming me in on every side. There's so much I want to do that I don't get to do...both in general, and in specific instances: no contra dancing, no fitness efforts, a cancelled date last night because I was too tired, no big sewing jobs.... I just have to let those things go and give them to God.

As my Roman Catholic friends say: "Offer it up". Indeed.

Sunday, April 22, 2012

The Tallest Mountain

Every Sunday morning I feel like I am fighting a war. Actually the war starts on Saturday night while I'm sleeping. If/when I can. I never sleep well, and each night of deep sleep comes with the price of weird dreams, a side effect of the Melatonin my doctor has me on. So I put up with bad dreams on most nights in order to feel refreshed in the mornings. Saturday nights/Sunday mornings, the dreams are always particularly vile and I always wake up on Sunday's very very depressed.

Yes, I know. There's a war going on.

And physically I wake up on Sundays feeling beaten. Pummeled. In pain.

Yes, I know. That war thing. It's no accident.

I fall asleep praying, I pray when I wake up at night, and a wake up praying. Lord have mercy. Theotokos help me. Jesus have mercy on me a sinner. It's nothing amazing...just me crying out to God.

And the battle rages on.

Many times, I lose the battle and stay a home. The physical aspects of living with chronic illness are sometimes too much for me and I just don't have the strength to be there and fight for that meeting with the Lord. I think the depression stuff is worse, or as bad as the pain and fatigue. Maybe its all one thing.

Today was not such a day. Today was a day when I woke up and fought and pressed through the pain. I was in pain the entire time at Church.

A victory, perhaps, to be, and my stupid embarrassing cane, which I barely used today because I didn't have the energy to stand up hardly at all.

I was there, and I made confession and I took communion. The most important things got accomplished. Win.

And folks, I wanna say: Anyone who is dead serious about living the Christian life is living in a spiritual battle zone. We are at war. We are not alone, by any means, but we are at war...and not just the ones of us who are dealing with chronic pain or illness. We are all of us either fighting this battle or not fighting it.

It helps to look at Sunday mornings as a war zone. It used to be that the battle played out on my insecurities, and Sunday was the day I could. not. find. a. thing. to. wear. and when I battled my insecurities the most. Lately that hasn't been the issue (I only changed shirts once and jacket/sweater once...but that's because I dripped makeup on my first shirt and because I opted for a more comfortable/softer sweater over a structured jacket due to pain this point I almost don't care what I look like as long as I'm decent).

But that Sunday morning battle rages. It hits our weakest spot. It's like climbing the tallest mountain, sometimes...just trying to make to the Eucharist.

Thursday, April 19, 2012

GAPS/Paleo/SCD Birthday Cake

Bethany turned 18 today! Congratulations, and God grant you many years! Lemon Cake with Lemon Filling recipe here.

Wednesday, April 18, 2012

This blog needs a new name

I gave up coffee. Someone forwarded me an article about some reasearch saying that coffee has a protein in it that is cross reactive to gluten. Well, goodbye coffee. I quit the moment I read that article...and I do believe I'm better off for it. Currently I'm swigging my way through the black tea in my cupboard and once that is gone, I'll go with green tea and probably stay with green tea. Unless/until I learn something evil about THAT.

Meanwhile, I do believe taking iron is helping me, as I have a modicum more of energy. Thank God, thank God, thank God!!!!

ANNNNNDDDDDD....I put on a t-shirt that the last time I tried it on was a bit snug, and it fit perfectly. I wore it all day yesterday. Today, I went to put on a shirt that used to fit just fine and it hung like a tent. So, I had to go through all the shirts in my closet, and a bunch of them now reside in a bag destined for the thrift store. Some of them beloved favorites, too. Oh well. I'm not going to weep. So I went from one gargantual plus size to the next smaller not-quite-as-gargantuan plus size. At least I'm headed in the right direction even though there's a long way to go.

So, this blog needs a new name. Coffee can no longer be part of my IDENTITY, which is what it was. I knew at the beginning of the year that this year would be a year of change and growth. It has been and is continuing to be. The GAPS process is huge for me right now, but I don't want my blog to be all about the GAPS diet. Gluten free is huge, but again...not my main main thing.

So, I'm stuck and can't come up with anything good. Suggestions?

Saturday, April 14, 2012

Holy Week

I feel so blessed. I AM so blessed, regardless of how I FEEL, and one of the things the Lord has been showing me is that I need to focus more oh how much He helps me (because He does!) and less on how tired I am.

This week, I think, God helped me A LOT. I was able to make several of the services. And that was a huge blessing. We did not go to the 12 Gospels service on Thursday night and on Wedesday, our kids were so fried that we scooted out the door as soon as we got our Holy Unction...B had been having a panic attack during the whole service.

So, Thursday night we stayed home and read the 12 Gospels together as a family. I decorated our fireplace mantle with some silk flowers found in our craft bin, and the right icons, and some candles. I know silk is a bit "redneck" but hey, we are shame!

The past two days I've been very busy in the kitchen. I've made SO MUCH FOOD...most of in "diet legal" junk food....GF cream puff shells, GAPS soda bread (well, B made that), GAPS nougats and chocolates which are ironically "lenten". I dyed the eggs reddish with onion skins, and found some gluten free salami at the store. I also bought some yummy sheep milk cheese and organic wine for our basket. It's been a busy two days, but I have been able to pace myself. I'm counting on a second wind to get me through the service tonight. Pure adrenaline!

We are all so excited! Pascha! Just a couple of more hours and we'll be heading out the door.

I was blessed to make it to Church this morning, and that was wonderful. Arise O Lord judge the earth, for to Thee belong all nations!

Sunday, April 08, 2012

Palm Sunday Fail

It was such a blessing yesterday to be able to go to Church and receive communion on Lazarus Saturday.

But that was yesterday.

Today: Palm Sunday Fail.

I was there. I arrived at about 10:20 and stood in the narthex while a baby was being churched. I could feel my energy leaving me at that point. You see, I was barely able to make it in the first place.

That's how my days have been. I do one thing, and I'm exhausted. I plan my days around much needed naps and the rest of the family is picking up my slack.

Almost like when I had mono. No, wait. JUST LIKE WHEN I HAD MONO! (Do I still have mono? Well, as soon as the blood work comes back, we will know.)

Meanwhile, back to my Palm Sunday fail...

So I make it in to churhc. I sit. I can barely hold myself up. Misery. The antiphons are a blur. So is the Epistle and Gospel reading. During the homily I put my head on Wes' shoulder and just drift. Jesus is King. OK, got that. Jesus needs to be King of my whole life. Yeah, well, He is. He's KING of this here sick person. And it seems his Kingly will not to heal me. I drift.

Then I had to escape and use the ladies room. Since we sit up front, it's a long walk of shame down the side aisle. I'm embarrassed by my wooden gait and by how sick I feel so I keep my head down. Everyone looks so healthy and beautiful.

I finally get to the ladies room. I greet some gorgeous healthy looking woman who is exiting. I'm alone in there so I let myself sob for a bit.

When I woke up this morning, my eyes had dark orange-brown circles around them, like I'd been beaten up. My face looked distorted and swollen. But I was determined. Trowel on the make-up and off I went.

Too bad make-up can't fix what's broken on the inside.

And truth be told, it didn't really do a good job of hiding my misery.

After a bit, Wes found me in the narthex and took me home. I crawled into bed.

I'm sick, ya'll. I'm so sick. And it just doesn't go away, and it never seems to get better.

On Friday I was at the doctor's. We go the results of my hair analysis back. I have copper levels that are WAY too high and it's throwing lots of other things out of whack....causing anemia for one thing.

Too high copper levels can cause fatigue, depression, alleriges, dyslexia, spaciness, anxiety, phobias...all these things I have. But to call it fatigue sounds too mild. It's the kind of fatigue not that you get after a good day's work. No, it's the SICK kind. When you have the flu and you can't stay upright for a second longer. That's how I feel every blessed day. NOt every moment. There are some moments when I have a bit of energy...when I feel approaching normal but that fatigue is lurking there and it does strike and I never know WHEN it will strike.

So there's the copper thing. There's the anemia thing. There's the fibromyalgia thing. and I"m waiting to find out if my mono is still active.

While she was taking blood, she's testing me for CMV and Lyme as well.

God's will be done, God's will be done, God's will be done. So I missed Palm Sunday Eucharist and the lovely procession. God's will be done. I"m sorry this post is such a downer. Here's a picture of my lovely dark rings around my eyes. I swear I look like I have a movie makeup job of a "sick person". LOL.

Wednesday, April 04, 2012

The Garden

Yesterday evening Wes and I took a drive out to the community garden to see what progress has been made.

It was a lovely evening. Insects were already flying in the grass by the road, and the earth had been disced, but not divided into plots yet. We hope to garden two of them this summer.

But there will be much work to be done. Wes wants to work it by hand, and bypass using the rototiller, and to that end he has purchased and spent the winter shapening a mattock. Just a wee step towards less dependance on petroleum products, I guess.

For my part, I just enjoy being out of doors, even if it means sitting and watching, or hobbling around with my cane, which support my legs need by the time evening comes.

After we looked around, we discovered some lettuce growing by the side of the road, so I picked it, and some wild flowers and we munched on some wood sorrel, enjoying its tart and tangy flavors for a few small bites.

While we were there, someone drove by with a horse in full lather who was pulling a two-wheeled cart. I thought my youngest daughter would have been outraged that the horse had its head pulled back by the harness straps to give it that more formal "look". She has, after all, read Black Beauty. ;-)

After looking at the garden-to-be and picking a few more wild flowers we drove over to where the animals are kept and said hello to the friendly goats. A few of them came up and let me scratch their chins and ears. Too bad I did not have any treats for them.

It was a lovely and warm evening and much too green for this early in April. I hope we don't get a hard freeze. Nobody plants much before Derby (early May) around here, but I'm not quite sure if that has to do with the actual weather or the unnatural focus on acquiring the best and biggest HAT.

Sunday, April 01, 2012


I have added new veils to my etsy shop. I must say, they are very pretty...and just in time for Holy Week and Pascha (Easter)!

Response Video to Why I Hate Religion but Love Jesus by the OCN