Monday, April 18, 2016

anticipatory

It's been so busy. It feels like one thing after another this last month.  And it can be a good barometer of how I'm healing to watch how my body responds to all the busy-ness.  Our family just got back from Seattle.  The WHOLE family went. WOW.  For sure my body isn't up to traveling alone with all the kids, and I'm thankful my husband volunteered to sit with the two most precocious ones on the way there and the way back.  And I'm thankful for gracious and understanding friends who let me just sit and be at their houses, not expecting me to jump up and help chop food and set tables.  They remember me at my sickest 5 years ago and while I've improved so so much since then, they are the kind of friends you want for life. They are godly and humble and selfless and they put your needs above their own and don't judge you for just needing to sit and watch them prepare food for (oh my goodness) 8 kids in all if you combine them!!

It was non-stop while we were there and it was so fun! But when we got back, my body crashed.  We walked in the door, I lay on the couch, and my body just crashed.  And it's been doing that for quite some time.  Even though I've been doing so much better and been able to do a lot more, walk a lot further, etc - I still pay for it. Usually it means I have to lay, recharge a bit, and then I'm able to get up and do a little more.  But the crash from Seattle was literally a 6 hour straight nap during the day, wake up to eat a little bit even though my tummy was queasy, watch a bit of Netflix, then sleep hard through the night.  My body needed a really big re-charge.  And the following day I still felt like I was recovering!

So energy is still a huge issue we are dealing with and in a few short days I will go to DC to see my doctor and discuss these things and get examined and find out what's what.

A lot of times I try to compare it to the phone battery - imagine waking up, but you only have about a 40% charge - even though you just slept through the night! After a shower and getting dressed, you're already down to 20%. Making breakfast for the kids takes you down to 5% and then you start thinking in your head about how to ration that last 5% until you can re-charge.  I have it down to a science on some days when we have to go out.  The shower goes out the window, obviously, and that saves me a little bit of battery "juice"; my husband makes the kids breakfast or the eldest will chip in, and that helps; but still you have these unexpected things that come up and boy, oh boy! You just don't know what is going to "drain your battery" or when you'll have a chance to lie down and re-charge.  Sometimes a nap is needed for a really good re-charge, sometimes just quiet and lying down is needed. It all depends on the severity of what energy has been expended.  And THAT is what needs to continue to be addressed with my doctor and team of doctors.  They have already been working on this and one of their solutions has already proven to have been helpful, but we've got some work to still do.

So that is why I am anticipating this next appointment at the end of the week to find out the next plan of action and see if we can't get some more energy ideas put into place and well as continuing to address killing off the last remaining little buggers of Lyme&Co.  Thankfully it looks as though there may not be many left.  But just as soon as I start thinking that and the doctors start evaluating that, sometimes Lyme can throw you for a loop...it's such a tricky disease.  So we continue to pray that God heals me completely and thoroughly and rids my body of all traces of this horrid disease!

We are thankful for how much more I am able to do and for all the improvement we've seen over the last years.  Even when it's hard to be thankful for the lows, I know God has used them to help encourage others, so I know there is glory for Him in that.  And I know my kids watch me closely and are learning valuable lessons that I hope one day will translate to them in one way or another. So - I anticipate the end of the week and what the doctor will say!

Wednesday, March 16, 2016

curled up

It's treatment week and it's just about that time in the week that I wilt.  My husband walks in for lunch and finds me curled up in a tight ball on the couch, the kids doing (what I can only hope are good and right) things in the playroom, and it's almost just routine now -  the tighter I'm curled, the more he knows I'm fighting the pain and the ugly ickiness that comes with killing what's left of the Lyme disease and the few co-infections I have left to get rid of that the tick gave me.  He acknowledges me and states (more than asking), "The medicine is catching up." And I sort of groan an unintelligible answer. And then he goes into the kitchen to do what I still long my body could do - a simple thing - make lunch without feeling like I've run a marathon! He gets lunch on the table for all the kids and brings me something to eat and I sit up, dizzy, but manage to eat even though my tummy doesn't feel right and I wish I had some strong ginger beer to help ease the queasiness.

I'm thankful that the Lord has let me have good mornings.  We get a lot done in the mornings - all that needs to be done gets done, but by lunch, I'm done for and then - as far as the kids are concerned, ESPECIALLY on treatment week, it's "room time".  They've gotten used to it since they were little - it started with music and toys and books in their little rooms and just branched out to accommodate me needing a rest time on more trying days when I need quiet and days when curling up tighter and tighter and tighter is really the only solution until help arrives (aka "Daddy's-home-from-work").

"If you really get into any kind of touch with Him you will, in fact, be humble -- delightfully humble, feeling the infinite relief of having for once got rid of all the silly nonsense about your own dignity which has made you restless and unhappy all your life." - C.S Lewis

We are really thankful that I haven't had a seizure since December.  We are praying that it remains that way.  I have to be mindful of various things when my body feels "on the verge" as we call it - noise, sensory overload, even standing for too long! So far, though, my doctor (and we) think that the dose of my seizure medication and the continued treatment of Lyme&Co and detoxing has helped with the seizures which used to be such a big problem - many a month, and now, praise God, ZERO since December!

When you're curled up in that tight, tight ball, all you can think of is the pain, or how awful you feel, or how you just.can't.get.up.  But that's the thing - it's another opportunity to turn your suffering into a mindful exercise of putting your mind off of yourself and your suffering and putting your mind on to Christ.  I still often don't know how or why God is putting me or us through this trial or this period of continued suffering, but I do know that He will and has been glorified through it; I need to stay steady at the course.

"The Son of God suffered unto the death, not that men might not suffer, but that their sufferings might be like His." - George MacDonald

As we come upon Easter and think about how Christ ultimately suffered for us, it's hard not to ponder and worship Him in a different way through the lens of one who has and is suffering. I can find many things that God has blessed me with and I am humbled.  I'm still learning to look along the beam of sunlight in regards to my affliction. 

And most of all, I keep beating this phrase into a kind of repetition when those moments of needing to curl up tight are all I can do - "this light momentary affliction is preparing for us an eternal weight of glory" - 

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." - 2 Corinthians 4:16-18

Friday, February 12, 2016

in true love

These are all words I've written before, but they are all compiled a bit differently.  You'll just have to excuse me.  My brain isn't functioning well enough to come up with original material today!  But I feel it's been too long that I haven't sung the sweet praises of the guy behind what makes this whole "machine" keep working, ticking, keep chugging along.  I honestly wouldn't be encouraged enough to continue on without God's graces and he tries to point me towards that in everything he does.  So - here we go:



I've probably written about it before.  In June 2006, Matt and I vowed before God and our 150 or so guests to love each other "in sickness and in health".  It's funny when you are preparing vows and thinking about them and the seriousness of them, when you read about your promise to love each other whether you're healthy or not, you consider minor illnesses like the flu or cold and you kinda get warm fuzzies thinking about how you'll get to pamper your husband-to-be with some homemade soup and some TLC.   You briefly consider the possibility of cancer or some other serious illness later on - WAY later on, but you're young, so those are fleeting thoughts that skip by without dwelling on the sadness of them but you know you are promising to stay even if that were to come about.

But we NEVER in our preparation for marriage even harbored an inkling of a thought about what would happen to us.  We got pregnant soon after getting married and were so overjoyed.  Our first anniversary came and went and then we were holding our little baby in our arms.  All seemed fine until I got gallstones 5 weeks after birth.  That was the straw that broke the camel's back.  A camel's back we didn't know existed until then.  It was the beginning of a long spiral downward into what we now know is Neurological Lyme Disease and Co-infections.

It was many days of pain, misdiagnosis, miscarriage, another baby, confusion, more misdiagnosis, more miscarriages and ultimately watching my husband watch me wilt before his eyes.  I went from a healthy 135 pounds to a sickly 105 pounds.  I could see the pain in Matt's face when he looked at me helpless.  He WANTED to help me.  He didn't want to run away or run out on our marriage.  That never crossed his mind.  He was so affected with pain FOR me that he would often (and still does) just sigh and say, "I wish there was some way I could take your place."

Finally, 4 years into marriage we got an accurate diagnosis.  While the diagnosis of Lyme&Co isn't grim in the sense that you are sentenced to a slow painful death, it IS grim in the fact that you are sentenced to a slow, painful recovery.  If Matt or I thought this was the easy answer to our years of frustrating misdiagnosed problems, we thought wrong.

The diagnosis came just in time.  I started having partial seizures (which later became much more severe) - something that left me scared and short of breath, just watching my limbs flail and wishing so badly I could just be unconscious (and years later I would be) for them.  Matt would calmly be by my side and talk soothingly in my ear while trying to shield me from the view of our two little ones.  I was embarrassed that he had to see me that way.  Heck, he'd seen me in way more "compromising" positions that should have been embarrassing but weren't.  But I think what embarrassed me about getting so ill was that I had always prided myself on how strong I was, how much endurance I had, how I could (usually) "keep up with the boys".  And here I was not able to move on my own.  I had to have help in the bathroom!  I needed help showering!  And, gasp!, I had to be pushed around in a wheelchair! I mean, it all felt demeaning.


But I'll tell you what, my husband NEVER made me feel demeaned.  He helped me without a second thought, like it was his job.  He's offered help when I was about to heave, picked me up off the bathroom floor and carried the full weight of me, and he's stayed by my side as I convulsed while neither one of us felt comfortable but had no idea what to do otherwise.  He's shoved medicine in my mouth when I otherwise couldn't do it myself.  He's cut up my food because my joints hurt and he offered to feed me when he saw me wilted at the kitchen table before my dinner.  The thing is - it is his job.  He promised it at our wedding. But he has never treated it as a burden.  

It's times like these that I reflect I am just dumbfounded and in awe at what a wonderful God I have, that He brought Matt and I together.  I can truly see His precise hand in the matter, knowing that I'd need this man and his humility and his servanthood in my life.

I'll tell you when I first understood the meaning of love in our marriage - - when my husband lovingly and without hesitation took on all the ugly parts of this disease that have made me physically not beautiful, emotionally not very nice (mean to him), and spiritually downtrodden.   He must truly love me and THAT gives me butterflies as I realize he is imitating our Savior which is just how he was commanded to love me in God's word at our wedding years ago.

 All the reasons I FELL in love with him in the very beginning, happen to be the same reasons I love him today. Let me give you some examples:

-Matt displayed humility and servanthood when we met - Over the course of our marriage this has showed itself very clearly. He never acts better than anyone; he always thinks and talks the best of people; he proactively looks for ways to serve me even when I don't ask; he doesn't complain about the 'burden' I can be since my health has been, let's just face it, AWFUL -  for most of our marriage -- he just tells me more than I could ever ask for, how much he loves me and never regrets marrying me; he never hesitates to admit fault and isn't stubborn about changing to become better for Christ. He is oh-so-patient with his feisty wife and doesn't expect me to be something more or less than I am. He encourages me to be like Christ but loves me even though I'm a sinner. He's brilliant too; he'd get mad if I told you his score on the SAT, but he won't talk about it or rub it in *wink*....really...try asking him - he gets super uncomfortable and you'll never get him to tell you :)

-Matt displayed persistence and diligence when we met - He works so hard, yet effortlessly and he's faithful to his job and hardly complains about it even though the hours can sometimes be late and his previous job was, I believe one of the hardest jobs of all time. He views life through the lens of God's sovereignty; he realizes God has planned our life to be the way it is, so instead of complaining about the seemingly bad things, he just plugs through them, trusting God because He is trustworthy. He learns things quickly and if he NEEDS to learn something, he pays attention so he can get the hang of it fast. He's never scared away from a project just because he doesn't know how to do it. He sets about working with his hands to figure it out. He's very determined (something his daughter has taken after him about!).

-Matt displayed teachability when we met - He is always open to suggestions (and I give them way too frequently) and always willing to change; but he's not a push-over...he'll defend his honor when needed and he'll put me in my place gently whenever I need it (thankfully!). He does care deeply about sin and wants to be holy. He is so trustworthy and honorable and my heart swells with pride when I think about him *flutter flutter flutter* :)

-Matt displayed leadership when we met - He's a good, strong, dependable leader. He doesn't flaunt his 'power' in our marriage. He leads with care and always tries to understand me and come alongside me. He communicates with me and tries to make our marriage a joint commitment, not a one-sided dictatorship. He makes it EASY for me to follow him and trust him because he cares so much about what I think. He doesn't have to, but he has totally earned my respect instead of demanding it.  He's a great daddy too and I know our kids are growing up respecting him as a father and learning from his humble example. I think it will be easy for them to want to know God more because of their Daddy's faith.

-Matt displayed a desire to know Christ more - I love how Matt gets excited about the Bible. He loves the Old Testament stories and often has insight to share with me about how applicable it can be to our lives. He thinks about Christ's words in the New Testament and wants to follow Him. He understands how to interpret the Word of God correctly and in context and how we should apply it to our lives to grow closer to Christ in our walk with him as a couple and as individuals.

-Matt displayed humor and laughter when we first met - I cannot tell you just how fun it is to laugh with Matt. We get the giggles ALL the time. We will laugh until we cry. We find the same things funny (which if you think about it is a real blessing....wouldn't it be awful if he thought some movie that I thought was terrible, was super hilarious?). We enjoy the same silliness that only each other understands and we can make each other laugh at the most rotten times in our lives. He knows how to get me out of a grump-frump by persistently, but not annoyingly, being silly to make me smile. This is a feat no one else can do! He knows how to balance the fine line of teasing me without offending me (too badly at least) :) He encourages me not to think too far ahead and get sad about the future (when sad things are ahead) when we have so many happy blessings right here in front of us.

-Matt displayed spontaneity when we met - He never complains when I come up with some last minute change of plans. He's fun to adventure with and even though the adventures don't always go as planned, it's fun to be along for the ride with HIM. We've gotten lost together so many times and sometimes even though I don't show it in the moment, I secretly enjoy the hilarity of our misadventures.

What a blessing to have a husband who doesn't change with the wind and what a blessing to know JUST what I was getting - no surprises after we said "I do." The only thing I didn't expect when I got married was how much fun it would be to be married to Matt.


I think time flies when you're not having fun too. Icky antibiotics and a routine that just kills ya.  It's not fun for me, but I see love all over and through it.  He care for me so much and I am so blessed that he is my husband.  

When I was on IV last year, he left for work at 7am, but we got up at 6am so that he could administer 2 doses of IV meds.  THAT, folks, is love for a guy who is not a morning person.  And he didn't complain about it at all.  No grumbling or whining or hemming or hawing; I've got a keeper and boy do I thank the Lord for him so very often that he's stuck with me through SICKNESS and health.  He's kept his vows for nearly 10 years of mostly sickness.  We pray this will be the year that health prevails.  But if not and the Lord chooses another path, we'll trust Him with that and do what He bids.

I know that neither Matt nor I are the exact same people we were when we got married ten years ago, but I know that the changes that have happened are GOOD and have brought us closer to the Lord and have deepened our faith and brought us closer to each other. Marriage isn't perfect and isn't always easy but when you follow the Lord and keep Him central in your marriage and try (ever so hard sometimes when your natural inclination just wants the opposite) to put the other first, it can be joyful.

Life is NOT how we dreamed it should be at this stage in our life. Married to each other - each other's best friend, 3 kids. I think we envisioned our lives being more adventurous. I mean, this truly has been some kind of adventure but we thought we'd be adventuring in other ways - across the world together, hiking, traveling, being more involved in our church, being more involved in tuning the hearts of our kids. I know for a fact that when we vowed our vows on our wedding day, that neither one of us expected THIS.

Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed. I Peter 4:12-13

But really we should have been ready for it, not surprised. If we were truly letting God lead our lives we wouldn't have been so taken aback. Even with the good things He's given us. I've always been so surprised by them. How wonderful the good things that God gives us are. We have SO many blessings and each time I was surprised at how good they were, when really? I should have known it would be so wonderful based on WHO He is. Maybe if I had spent more time studying WHO God really is I wouldn't have to remind myself that the good things are more wonderful than we can imagine and the bad things are not out of His control.

“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain” - C.S Lewis The Problem of Pain


We don't doubt God's sovereignty over this trial in our lives. Even as bad as it has been and as worse as it's got. We're no longer at the point of feeling shocked at each new physical scary symptom. We're leaning on our Guide knowing that He may keep giving us scary things to deal with and giving us things we don't want to experience. But we know it's not out of His control. He is leading us all the way.
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. Deuteronomy 31:8

So here are the last few things I have to say about my partner in life that God ordained to spend with me through thick and thin - the things I love about him - the not so serious things - the silly, fun things that wrap this up and make it a bit more lighthearted: 

1) I love how he's taken on the role of "chef" in our family since I've gotten ill and haven't had energy to make dinners.  He's taken it to the extreme and done VERY well with it.  He does own the Julia Child cookbooks and has read them and now understands the whys of how cooking her way works wellHe'll explain to me why I am saying, "These fingerling potatoes are SOOOOOO good!".  He LOVES to cook and come up with delicious food for us each night.  He's a good chef and someday I know he'll go to culinary school. 

2)  I love how he loves our kids.  He wants every little story about them that he misses during the day while he's at work.  He laughs with me at their silliness and will often report to ME when they do something hilarious that I've missed.  

3) I love how he's the best singer of 'Mr. Roboto' that I've ever heard.

4) I love that he can spend hours on a piano bench taking turns playing the piano, guitar, and ukulele.

5) I love how he likes our cat (even though he might deny it to your face...but he likes her and that makes me happy).

6) I love how he makes fun of the music on my playlists, yet he listens to them and sings along.

7) I love how he never ceases to keep me entertained just by being himself.

8) I love that he studies God's Word faithfully.

Happy Valentine's Day, to the one who I know won't abandon me even though I'm quite a mess!


Monday, January 4, 2016

alive

I'm here guys.  I know it's been 8 months.  I did get my line out. I did take a shower (only to find out our hot water heater was really old and only held hot water for 5 minutes -- so my husband gifted me a new one and I took a very long HOT shower).  I did take a jacuzzi.  I did swim in a pool.

It's been 8 months.  The line came out.  It's been hard...still.  Maybe I expected it to be easier like *poof* - your line is out - you are a jump higher on the mountain climb of Lyme&Co? But it is still a bumpy mountain bike trail that hits rocks and divets and goes deeply down and up up up and then down again.

It's been hard. It's not just Lyme I have to contend with so that makes it all the more hard. Life and Lyme - how do people get better I wonder sometimes? But my doctor is committed. Won't give up. In it for the long haul.  Despite being beaten up by the IDSA - they trudge on because of patients like me and you because they see us getting better even if it is little by little.  They are trained to see the sunshine as the coal dust settles and they see it and it's what keeps my doctor and staff going and for that I can be grateful!

Anyway. I haven't been up much for writing.  But I'm here and much has been going on in my Lyme world. And maybe someday I will write about it. And maybe today writing something means I'm a little more open to sharing more and more. Hope you all are soldiering on no matter what ails you! ((hugs))

Monday, April 20, 2015

like it's coming out

This is the week that Lord willing my PowerLine will be coming out.  Just a couple more Lactated Ringer's solution drips through the line and then it'll be bye-bye. It's been about a year since it's been in and it did help me a lot. Of course I'm still working hard to get well, but going through IV was a big push in the right direction.

Thursday, March 26, 2015

limed


Lyme disease is often misdiagnosed as Chronic Fatigue Syndrome, Fibromyalgia, MS, Parkinson's, ALS, and more. I was misdiagnosed for several years. Both of my girls were treated and now are symptom free. It's so important to rule out Lyme with a specialist if you've received any of the above diagnoses. These pictures were part of the Lyme Disease Challenge and you may have seen ones like them going around lately. 

My last appointment in DC went well.  I'm making slow and steady progress with fewer seizures and we're trying to get down to the bottom of my energy issues. For this next two rounds of treatment we are trying new things to figure out if there are underlying causes and I've had lab work drawn once again to see if anything can be figured out besides "THIS IS LYME" and this disease is terrible.  But really, in the end, one day, I will be my normal self again and that is the hope.  And energy should be returned to its full strength to be considered normal in my book.

I'm still without joint pain which is wonderful! I'm so so thankful that the Lord has seen fit to keep that away.  I may have kicked it for good.  I think the best news from the appointment was that at the end of April I will get to have my line removed! Yipee :)  Showers and jacuzzis and beaches and swimming are in my summer future! Just.in.time. 

While things are looking up, life is still quite hard as it is difficult to function on very low energy reserves. So pray that the Lord would strengthen me and that the doctors would find answers as to how to remedy that.  And as you can imagine, life doesn't stop when you have three children, especially small ones!

Lord, I'm drowning
In a sea of perplexity.
Waves of confusion
Crash over me.
I'm too weak
To shout for help.
Either quiet the waves
Or lift me above them--
It's too late
To learn to swim.
-Ruth Harms Calkin

But I continue to try to stay prepared daily for each "crisis" through prayer and through His Word, for only those things will get you through to the end.  And I know He still is doing what He has planned for me even though it's hurting like heck.

"He knows the way I take; when He has tried me, I shall come forth as gold. My foot has held fast to His path; I have kept His way and not turned aside. I have not departed from the command of His lips; i have treasured the words of His mouth more than my necessary food. But he is unique and who can turn Him? And what His soul desires, that He does. He performs what is appointed for me." - Job 23:10-14


Wednesday, February 11, 2015

stalled

It's been a while.  But the good news is, I'm no longer on IV antibiotics!  I've graduated to orals.  I've still got my trusty line in, though and I'm using it for Lactated Ringer's solution to help flush out and detoxify.

I already have a month of oral antibiotics under my belt and I'm underway with my second month.  And like a stalled car just trying to start I feel like I'm screaming at my immune system to please kick in and start!  Please! Please! Remember your job - start up again - do what you're supposed to be doing!

I'm quite worn out all the time and can function minimally, but I have just come out of the battle as my husband reminds me.  It's early to start expecting me to bounce up and be perky with vigor.  But I've got to say I'm frustrated. I'm so frustrated and downtrodden. This is such a sucking vortex of a disease that brings you down down down into a pit of despair if you don't watch out for it and I've got sucked into it because I wasn't careful to guard my heart.

It's been 4 years since I was diagnosed, but it was 8 years since I was debilitated by the disease and longer since I've had symptoms.  Eight years is a long time to be really sick and nearly non-functioning most of the time with various stages of people and friends who do and don't understand what you're going through with opinions flaring and such.  Downtrodden.

But there's lots to be thankful for!  There have been many who have been so supportive!  My family for one!  Most of our close friends in the previous states we've lived in - they did so much in acting as family since our family couldn't be there.  They truly were the body of Christ and we are so thankful for that.

I'm thankful my second daughter is (with a tentative voice) Lyme-free. That has been a very long road filled with triumphs and setbacks and heartache and someday I may tell her whole story because I know it may encourage others with parents who have children with Lyme.  We have no kids with Lyme disease now.  Praise the Lord.

It's just me now.  I need to heal.  Why can't I heal faster?  More like, why can't I be patient?  Isn't 8 years patient enough?  I hate this disease.  Coming in to see a doctor after being so so sick for 4 years for sure means it's going to take a bit longer to heal than your average person.  I know that.  My husband and I just wish we could finally be done with this disease once and for all.  We see the success stories and know it will happen.  But Lord, when will it happen for ME?