Tales From the Dark Side

Lyme Chronicles - Tales From the Dark Side

As I was talking to my mom last week on the phone and the blur of the past eleven years of Lyme disease mixed with yet another wave of symptoms was crashing down on my world, I asked her to have her church pray for me...especially since we haven't really plugged in anywhere since we moved to a new city. Without hesitation she said, "I'm on it." In the midst of my funk and despair she made me laugh, which I appreciate more than she probably knows. She told me she calls the Lyme bouts "Tales from the Dark Side." And while that title is pretty funny and cracks me up, there is unfortunately a whole lot of truth to it, too.
I am grateful that my mom has learned so much about Lyme disease. I don't feel that chasm of misunderstanding.  She even knows two other ladies that she has befriended who are going through their own battle with this stupid illness.
On a good day it can look to others like I am probably healthier than they are...I'm glad I dont look like I feel, I might get locked up and tested by a government facility if I resembled how I feel on the inside, or possibly shot by a scared citizen.

I have for the most part given up on trying to explain what it is to people anymore. It's hard to describe. It's hard to find words. The blank stare and inability for people to grasp the depth of what I am trying to convey only brings about a deeper awareness that I will gain very few companions on this journey who will "get it".

 Not that everyone needs to get it, but there is something nurturing to the soul when you feel understood.
I don't know that there are even words that feel adequate to describe it. I mean, I could easily spout off a list of symptoms, point people to websites, endless articles on the drama behind the scenes of Lyme disease, etc. but that is not what I mean when I say it can't be described. It's the experience of the symptoms that knocks the wind out you. The heart wrenching rollercoaster of heartbreak, dashed hopes, elusive answers, and the unclear treatment path. The desperate attempt at a cure that ends up feeling like grasping at the wind. The emotional weariness that makes you crave to be in heaven with Jesus from the very depths of your being. The hours, days and years that have slipped by and seem to have been survived more than lived. That sense of feeling robbed of the plans you had to be that amazing mom, wife and friend to others. Instead it seems that life has been spent getting IV treatments, eating a diet concocted through trial and error, taking supplements numerous times throughout the day and doing the bare minimum (eat, sleep, exercise, attempts at connecting with the kin I live with) and feeling like its a huge undertaking.

 One of the things that gets to me the most is when I can't focus and my brain feels like a blob. When I can't retain things I really want to remember well or the difficulty in taking on tasks that require lots of mental focus or require an ability to handle negative stresses. Things that used to be a normal part of life that have become unattainable...for now. (I still hope to get better.)

 And even though I am tremendously blessed with an amazing husband, fabulous kids, the ability to homeschool and I am able to see a doctor for treatment, there is still a heaviness there. Its like having a gourmet meal served to you but you have no taste buds. You can't experience the fullness of what's in front of you because your senses are dulled. They are being shredded apart by the endless affliction. While there have been stretches where life feels almost normal on the outside, and symptoms slow from a raging boil to a slow simmer, the heart is always painfully aware of that thorn in the flesh.
And even though I don't understand the whys of it all,

God has revealed so much truth to me in the midst of this living nightmare. Not by way of feelings, be it emotional or spiritual highs, but through the Word. Endless hours of expository teaching from K-House and laying on a couch listening to K-Wave. There is one sure thing that will push you to search for Truth, and that is when all your ability to experience comfort in this world is stripped away.

I am so grateful for the promises of God and that in the end it will be worth it all.

Until that time I will cling to Him and when I lose my grip I am so glad to know that His hands are strong enough to carry me through.

 

I am grateful for the moments where I have been able to catch my breath and have some laughs and joyful experiences with my kids and husband. But even the best of joys experienced here are but a foretaste of heaven. Even with all we think we know, it is hardly even a drop in the bucket.

I am looking forward to heaven. Don't get me wrong, I love my family very much and all, but better is one day in His courts than thousands elsewhere. Did you catch that? Elsewhere includes the most amazing place you could imagine spending your days here on this perishing Earth. Oh the joy that will be experienced! I am grateful for the Psalms, for Job and for songwriters who use their gifts to create masterpieces of music that put words to my innermost feelings and experiences. I could give a  laundry list, but in the interest of time I leave you with this one. I love this song, but here is the original writing:

Absent from flesh! O blissful thought!
 What unknown joys this moment brings!
 Freed from the mischiefs sin has brought,
 From pains, and fears, and all their springs.

Absent from flesh! Illustrious day!
 Surprising scene! triumphant stroke
 That rends the prison of my clay;
 And I can feel my fetters broke.

Absent from flesh! then rise, my soul,
 Where feet nor wings could never climb,
 Beyond the heavens, where planets roll,
 Beyond all keep of time.

I go where God and glory shine,
 His presence makes eternal day:
 My all that's mortal I resign,
 For angels wait and point my way.

-Isaac Watts

Is it Summer Yet?

"Is it summer yet?" I whine to myself. No, my kids aren't whining. It's me. I confess. Even though we are only about midway through spring, and the scorching Arizona heat is quickly approaching, I am ready for summer. Not because I enjoy feeling like I am sitting in a convection oven being baked alive. No. That is not appealing to anyone sane. I am ready for the school year to end!

Pretty sure I still feel the same way about the end of the school year now as I did when I was in school back in 19??. I think I am scarred for life. My kids don't experience school the same way I did though because they are homeschooled. Lucky kids. Yup. We homeschool. And we wouldn't have it any other way. We think it's pretty fantastic. Who wouldn't enjoy rolling out of bed without the prompting of an alarm clock ringing in your ear? I'm relieved I don't have to jump out of bed and rush around. I'm pretty sure I would be a bear, to use a term that won't soil your mind. No thank you. I'll pass. I love getting to dictate the order of my day and the family schedule...or the lack thereof. I am blessed and I am grateful to let my day begin with the following:

 

 

...followed by a little quality time with the hubby as the kiddos stroll down the stairs one by one after they each roll out of bed.

The littles forage through the kitchen shoveling whatever breakfast item they find into their sweet, adorable faces. They really are adorable. I'm not biased, either. Sometimes I feed them, but I am a big fan of the littles learning how to make breakfast for themselves and others. Don't worry, they aren't that little. I wouldn't make my one year old crawl into the kitchen to prepare breakfast. I wait until they can walk.

After breakfast it's time to hit the books. Well, I don't hit the books. They do. But I still have to keep track. Make sure everyone is doing their work, learning the necessary things as far as "school" goes. It may not sound like much, but it's a heavy load to carry in my mind. "Can they spell? Can they articulate? Do they read, speak and write so that it is apparent that English is their first language?" These are regular thoughts that pass through my mind, so I am looking forward to a break from all those internal questions that prompt me to frantically scope out what curriculum items we are using for each subject and whether or not they understand the work they are doing.

I used to be a fan of year round schooling. Yeah. Those days are over. The school year always seems to starts with a fresh feeling of, "Yes! Let's do this! We are going to rock this school year!" and slowly dwindles to "What do you have left to do in your history book? Three lessons? Okay, crank them out...don't ask me such hard questions! The answer should be in your book. Go ask your dad." Besides, playtime, downtime, rest and relaxation are just as important to a persons growth and development as discipline, learning and work.

I am sooooooo ready for a summer break.

Relaxing is definitely not a waste of time. I am ready for swimming, late nights, barbeques and s'mores. I am ready for some "time off" when all I have to figure out is how we can create some fun memories. I am ready to minimize my schedule to where the hardest things in my day are:

along with a little pool time and hopefully a vacation. Did I mention the pool? I look forward to enough time off to refresh my soul so we can start it all over again when fall arrives. Perhaps we will even get back out to the coast again. Do a round with the in-laws, see nieces, nephews, cousins and siblings who are always alarmingly older with each visit. Because I always need a jolting reminder of how much older I am growing. As if my kids don't do that reality enough justice. Ha! But I digress. My mind is ready for a reprieve. My soul is in need of refreshing. 

So I am counting the days because I am ready for summertime.

Is it Summer Yet?