all "spoon'd" out

For the next two weeks I do not have to take Lyme-killing-meds.  The hope is that my body will rally and I'll feel "good" and better for as long as possible to sort of gauge how well the meds are working.

Problem is, I started this week off with a holiday.  A holiday that I simply couldn't just lay around for.  I was too excited.  On Saturday we gave the girls their Easter baskets and did an easter-egg hunt in our backyard.  Even just getting off the couch and standing outside with her and Daddy took some of my "spoons".  My body had just come off of a rough 2 weeks of treatment so I really didn't have "spoons" to spare.  I was in "spoon" debt.

Then the next day was Easter.  We got up early and got ready for church to go celebrate the resurrection of our Savior.  Right after church we came home and cooked and cooked to prepare an Easter "feast" (as my little girl calls it).  My husband made me rest a lot during this but some recipes just need Mommy's touch.   We had a few friends there to help too so that made it easier.

But preparing food, socializing (with great friends no less), etc., always depletes my already depleted supply of spoons.  It's so sad that something so fun can make you feel awful the next day. So there I was left on Monday -- pretty sad and feeling awful.  But you know what?  My husband and I talk about it.  He'll always say, "Are you sure you want to do that because it'll just make you feel worse afterward?"  And depending on the activity I'll say, "I know the cost, but it's worth it for this!"  And that's just what it was this weekend.  It was all worth it to feel worse afterward.  I didn't mind losing "spoons" for all that.

Today I feel a LOT better but I'm laying low just the same to make sure I can truly recover and not overdo it these next two weeks.  It helps so much that my sweet friend from our old church out-of-state came to visit for a couple weeks and she's helping with the kids.  It really is giving my body a chance to recover from treatment AND the busy weekend.

I was SO excited for Easter-feast :)  While on the yucky meds, I was perpetually NOT hungry.  Every night my husband would ask what I would like him to make for dinner and every night my answer was, "Blech.  Don't ask me.  Just give me food and I'll do my best."  I worked HARD to eat something at every meal.  It wasn't always very MUCH food, but I did EAT so that was good.  I ended up losing 10 lbs. over the course of the last month or so.  Not great for someone who was already underweight.....and for someone who gaining weight is a HARD endeavor.

But all that to say, I planned our Easter meal because I knew I would probably have a better appetite and so I picked things that sounded delicious.  We had a yummy ham (from Costco that I'm proud to say this year, the brown-sugar basting sauce is gluten free!), rack of lamb, cold spinach salad, potatoes au gratin, fruit salad with a delicious vanilla-citrus sauce, deviled eggs, and Brazilian cheese rolls.  All of this was gluten free and we didn't have to work hard to make it so.  No substitutions were made for all the of recipes.  I think Easter is the only major holiday that that has happened for us!  I mean, I suppose you could say that the rolls were substituting but I think since they ARE a real "roll" in Brazil that weren't "meant" to be gluten free, they can be counted as "normal" food. :)

Oh it was so delicious -- all that food.  But the sad thing is, I think my stomach has shrunk since being on the latest meds.  So I piled my plate only to eat about 1/4-1/2 of it!!!  The good thing about big feasts hosted at your house, though, is that you get leftovers ALL week :)  And I've definitely been taking full advantage of that.

So anyway, leaving on a "food" note, I'll say - here's hoping and praying that the next two weeks will be easy on my body and encouraging to my soul!

weary

"There is no attribute more comforting to His children than that of God's Sovereignty.  Under the most adverse circumstances, in the most severe trials, they believe that Sovereignty has ordained their afflictions, that Sovereignty overrules them, and that Sovereignty will sanctify them all.  There is nothing for which the children ought more earnestly to contend than the doctrine of their Master over all creation - the Kingship of God over all the works of His own hands - the Throne of God and His right to sit upon that Throne.  

On the other hand, there is no doctrine more hated by worldings, no truth of which they have made such a football, as the great, stupendous, but yet most certain doctrine of the Sovereignty of the infinite Jehovah.  Men will allow God to be everywhere except on His throne.  They will allow Him to be in His workshop to fashion worlds and make stars.  They will allow Him to be in His almonry to dispense His alms and bestow His bounties........but when God ascends His throne, His creatures then gnash their teeth.  And we proclaim an ENTHRONED God, and His right to do as He wills with His own, to dispose of His creatures as HE thinks well, without consulting them in the matter; then it is that we are hissed and execrated, and then it is that men turn a deaf ear to us, for God on His throne is not the God they love.  But it is God upon the throne that we love to preach.  It is God upon His throne whom we trust."

-Charles Spurgeon

*sigh*  My husband and I remind ourselves OFTEN of His Sovereignty and that He ordained our lives to be THIS way.  This disease is oh-so-tiring in the practice of belief in His sovereignty and faithfulness and goodness.  I'd love to say it comes easy but it doesn't.  That's why it IS sanctifying (to purify or free from sin).  We have the roots of these doctrines and do feel held down and can repeat them to each other and to God as we cry out to Him,  but we teeter every so often (as I expect anyone going through a difficult trial can attest to) as we see how ugly and draining and depressing this illness is not only to me but to our family life.

Every few weeks I think I'm dying.  I do.  I lay wherever my body is collapsed and actually wonder, "I think this is what dying feels like."  And sadly, in that moment I am more excited for heaven to be out of pain and misery than I am to see our Savior.  I've pondered that more often lately and have tried to make a conscious effort to refocus my view of God and just how awesome it will be to be there with Him.  Even the fact that when I was 4 years old and "accepted Jesus into my heart", I remember doing it out of fear of hell and not so much because of the view I had of myself as a sinner before a Holy, blameless and pure God.  Yes, I know, four is an age where that can be a hard concept to grasp so fear of hell can work :)  It wasn't until I was older that I grew more in the knowledge of Him by reading the Bible and listening to sermons that dissected and taught the meaning of His Word and realized what a wonderful thing it will be to be in the presence of God in heaven some day because of what He did for my sin.

I heard it somewhere and I forget where so I'm sorry I can't find the source....but anyway -- they say cancer patients and AIDS patients don't want to die...but some do because they just can't stop that from happening.  But Lyme patients -- they DO want to die and they can't.  In most cases, Lyme disease does NOT kill you.  It just makes your physical existence terrible....and that word isn't even the most accurate word I can think of.

I feel that way every few months.  I actually think of how much better it would be to be dead (because of my physical misery).  Matt is encouraging when I am feeling this way.  He offers to do anything that could help my misery.  We've found a few tricks that sometimes ease pain and malaise.  But they don't always work.  It's very frustrating.

And it's not just the physical misery -- it's the misery in all aspects of our lives that the disease touches.  I can get so mentally weary and discouraged and so can Matt.  Usually when one of us is up, the other is down so we have the other to encourage.  But lately, we've both just been so weary and discouraged TOGETHER.  Our family and church family has faithfully prayed for us and we've received little encouragements here and there.

"In all His relations with His people God is faithful.  He may be safely relied upon.  No one ever yet really trusted Him in vain.  We find this precious truth expressed almost everywhere in the Scriptures, for His people need to know that faithfulness is an essential part of the Divine character.  This is the basis of our confidence in Him. "

"There are seasons in the lives of all when it is not easy, no not even for Christians, to believe that God is faithful.  Our faith is sorely tried, our eyes bedimmed with tears, and we can no longer trace the out workings of His love.  Our ears are distracted with the noises of the world, harassed by the atheistic whisperings of Satan, and we can no longer hear the sweet accents of His still small voice.......We find it difficult, yea, impossible, for carnal reason to harmonize His frowning providence with His gracious promises.  Ah, faltering soul, severely tried fellow pilgrim, seek grace to heed Isa. 50:10, "Who is among you that walk in darkness and hath no light?  Let him trust in the name of the Lord, and stay upon his God."

-A.W. Pink (The Attributes of God)

And so we carry on...bedraggled....and always thinking of our example to our little ones and trying to teach them that though life is difficult right now, God IS faithful to us in so many ways, even the ways we don't think of.  And that we trust Him because He is sovereign.  And even when we don't feel, we still obey because His goodness, faithfulness, and sovereignty is not dependent on our happiness or well-being.

 I'm thankful this Good Friday to reflect upon His death on the cross that paid the penalty for my sins and that because of His death and resurrection I can have a personal relationship with Him.  And through the reading of the Bible which is His Word, I can learn to trust in the promises He's made in it because they haven't once failed me.

Happy Easter, everyone! 

blessed

Did I ever tell you how we jumped right into a church and prayed that God would provide just the right group of friends who would not scrutinize or question my disease as some people can?  And how we prayed that God would provide a group of people who would feel led to HELP us in our time of need.  That's not always easy to do with new people so we felt it would be a gift from God if we could find people like that.  We were new to the area and had no family or "back-up" anywhere nearby.

God answered our prayers almost as SOON as we got here.  We made a thoughtful and prayerful decision about which church to attend.  We wanted one that valued the Word of God and taught it faithfully and truthfully.  After attending a few, we found a great one.

Our next order of business was to find a "Sunday School" class.  This is the kind of thing that you attend AFTER the main worship/preaching service.  It's more intimate as it involves a smaller group of people and you study the Word of God even more together.  So our first Sunday there, Matt and I just sort of aimlessly walked on the campus of the church (it's not terribly large) because we had the bulletin and it suggested a few Sunday School classes that might have our age group/stage in life in them.  We walked past one class and looked inside.  We thought maybe we had gone to the wrong room because most of the people were 50+ years!  So we left.  No one had really noticed us there.  Then we kept walking.  Past a group of family type people.  No one stopped to say hello.  That's okay.  They were all engrossed in conversation.

We kept walking and thought maybe we would just call it a day and research it more online on the church's website.  But then a voice called to us, "Hey!  Are you guys new?"  We must have looked it with our confused faces and slow walk.  The man came up to us and extended his hand and proceeded to make us feel so welcome.  He said, "Would you like to join us today in our Sunday school?"  Did we have a choice?  I'm kidding :)  We actually did.

He brought us into the room and there were couples of all different stages of life and just about EVERYONE came up to us before class started and genuinely welcomed us.  Then as class started the leader said, "So, we have some new people here.  Who met them and who can tell me something about them?"  Boy, I liked that.  I don't like standing up and introducing myself and talking about us :)  All of the sudden the room chimed in here and there.  All over the room there were facts about us spilling out.  These people really DID care and they WERE listening to us when we met them earlier.

After class, a few couples came and asked if we wanted to go out to lunch.  We said no but that we love to be asked.  We didn't tell them that it was because I was so fatigued from Lyme.  In fact, we hadn't told anyone about Lyme yet.  We felt so weird coming into a church NEEDING instead of being able to come in SERVING as we wanted.  We didn't really know how to bring it up.  I figured one of those Sundays I'd be in a wheelchair anyway so it would have to come up.

Still unsure whether this was THE church God had for us, we decided to try it a few more times.  Each time we returned to the Sunday School class and began to really get to know people.  They were so welcoming and friendly and godly!  Such a blessing.

They do prayer time every week.  So after about the third week of us being there we trepidatiously shared our prayer request.  Well, Matt wasn't trepidatious.  I'm always worried when I share with someone that I have Lyme that they will judge or that they will somehow know so much about the controversy of the disease that they will argue with us.  Or even just that they will say, "But you don't LOOK sick."  It's a hard disease to convey to people sometimes unless you're wheelchair bound or convulsing in front of them.

I was working myself up inside so I did start tremoring.  So Matt decided to talk.  He shared with them that now that we had chosen this church to be in and that we felt so blessed to be among these new friends we felt comfortable sharing our request for prayer.  Matt told of our struggle with my illness and we went into details of how it affects our every day life.  And we asked that they would continually pray that I would have strength to care for the girls each day while Matt is at work and more than anything that God would be glorified though my illness.

Everyone was sympathetic.  No one judged.  No one questioned.  There was immediate prayer for us.  And immediate love - a few women right then and there said, "We have care calendars for this type of thing.  Let's talk after and set up some days we can help you!"

And since then (February), they have stepped up, bringing meals once or twice a month and coming to play with the girls a few times a month (or more when people's schedules work out), and coming to CLEAN MY HOUSE.  Wow.  This is the body of Christ at work.  Genuine Christ-like love.  An amazing example not only for me and my husband but for my young girls.

And those of you with chronic illnesses know that it's not just the sick one that suffers, but also their spouse.  This church we are in understands that.  They pray every week not only for me but for Matt and that he wouldn't be discouraged and that God would give HIM strength to deal with all the extras that are put upon him since I'm sick -- all the gaps he has to fill.

And then today, a random call from a dear one in our class.  He said, "I'm coming over to do whatever you want. I'm bringing a few of my daughters too. We'll all pitch in and help.  We can do yard work or laundry or whatever you need.  Or if there's anything that Matt needs done that we could help with to free him up, we'll do that."

Wow, was that timely.  I told him I definitely could think of a list of things that would be so helpful if they did for Matt.  He said they felt BLESSED to be able to help.  And I'm so excited to be able to surprise Matt with accomplished work done by a loving friend.  I know he will feel overwhelmingly grateful.

This is truly what the body of Christ (the church) looks like!  And God has used it to encourage us through these dreary days of illness.  Thank you, Lord!

right back down again

The evil yellow "paint medicine" has got me down again!  One more week and then I've got a 2 week medicine vacation!  I'm hoping that "off" time goes well and I can feel somewhat normal.

I was thinking again today just how much I use to take for granted how easy it was to do seemingly mundane things in my life.  Like showering.  This has got to be one of my biggest nemesis.  On harder days, a shower completely takes it out of me.  So far my record is 3 days between showers just because of how draining it can be.  And when I do shower, I certainly do not have the energy to shave my legs.  For this I feel terrible.

You know?  Your husband already has a sick wife and you would like to be aesthetically pleasing.....or at least as aesthetically pleasing as you can muster.  Makeup is hard....too much energy. I save it for when we go out (as few and far between as those times are).  Dressing isn't so draining for me so I try to dress fairly normal for Matt and try to AVOID sweatpants if I can, although some days sweatpants are a must.  Hair?  Well, I will confess I let mine air-dry.  And that isn't always pretty.  I do what I can with clips and such but that's just about it.

Oh how I long for the day when I can have the energy to get up, smell pretty, shave my legs, put on makeup, do my hair, and care for the kids, and have dinner on the table for my hardworking husband.  I know the day will come so I'm looking forward to it!

up for air

It didn't happen until Wednesday of this week but I'm happy to say after "drowning" for about 4 or so weeks, I am finally up for air.  I have no idea why but I'm thankful.  I'm grateful that I can have some days of reprieve from awful fatigue and pain until I start up the meds again on Monday.

So I am here.  And I am enjoying my family.  And hopefully I can post a bit more often.  I'm trying to arrange a Q&A that I think most of you will really enjoy reading.  So stay tuned.