Helps to laugh!

Seizure cartoon

When the time is right

One of the hardest parts about chronic illness for me (longer-duration illness, not permanent, hopefully!) is the change in my relationships.  I’ve written previously about the loss of casual friendships, the ones based upon common interests or gathering places.  Today I’m talking about the one between a husband and wife.

Steve and I have been married almost 6 years.  I call him my “intended beloved” since I believe the Lord has blessed me with an amazing man of God as my life partner.  We came together in our late 40’s, having learned much about life, people, and the Lord’s enduring grace in the years before we met.  We’d both lost our youngest sibling and the last of our grandparents within the past 10 years, shared both similar and completely opposite interests, had to relocate due to divorce, seen plenty of changes in the world around us, and came to a saving faith in Jesus Christ as adults.  Still when we got together we needed to work on a few things as a couple.  I believe these things have become our strengths and bonded us together for life.  Yes!

Steve and I share the “love language” of caring touch.  (For more on the 5 love languages, see the work of Gary Chapman.)  Therein the challenge of late lies.  The most noxious symptom of Chronic Inflammatory Response Syndrome for me is seizure-like episodes, 3-4 times per day.  Most any sensory stimuli can make a seizure attack worse or even trigger one if it is intense enough.  An episode can become  worse after it starts if Steve or anyone touches me.  So imagine a loving spouse attempting to comfort his or her beloved at a time of severe illness, reaching out and discovering that the gesture actually makes the person worse!  And if this happens over an over again, despite the caution, precautions taken to be gentle or vary the type of comfort, the spouse can become discouraged.  In our marriage, we have decided to work with the symptomatology and find a firm touch or closeness by proximity that sort of worked for me.  Thankfully, Steve did not stop trying altogether.  I understand that could have happened.

After all, the worst seizure attacks and convulsions happen late at night.  Steve often needs to go to bed to get up for work or another commitment the next morning so he simply cannot stay up with me night after night.  Our physical intimacy suffers.  Oh and if the attack isn’t so bad and we attempt marital relations, it’s a crap shoot whether or not the noxious symptoms start again.  Can you imagine turning something intended to be precious into something so ugly?  We often don’t even “go there” if I’m feeling sick or I’m in “pre-tic mode.”  The heartache of frustrating my spouse isn’t worth the Russian roulette we must play to see if things are going to work out o.k.  Stopping a tender moment also wrecks my thought process; it wrecks “the mood” for me.  Steve just says, unbelievably, that he doesn’t mind or that we had a time of closeness anyways.  Where do they make guys like him anyways?  Certainly I had not seen any in my past . . .

And this is where I must trust the Lord to sustain me, to sustain Steve-and-me through this season of our relationship.  I am incredibly blessed to be married to a man who loves me truly, “in sickness and in health.”  I did not experience this when I was married before as a young woman.  The Lord allowed certain health issues at that time to challenge us, test us, deepen our faith and we both failed to lean on His leading to overcome the trials.  In the end, my former spouse turned to another woman for solace and physical intimacy.  She was an unlikely comfort:  wealthy, mother of 6 children, and spouse of a man about to be imprisoned for embezzlement.  Craig left anyways.  And what that left me was a fear of relational intimacy or at least of trusting another man to endure the inevitable trials of life.

In the time that followed as a single woman, I turned to my Heavenly Husband for comfort, protection, provision.  He was my constant companion and much healing occurred.  It wasn’t until a time of serious illness struck 2 years ago and 4 years into my marriage to Steve that I realized a little more recovery was needed.  Steve’s steadfastness strengthened by his true relationship with the Lord has never waivered.  Never!  I am humbled and grateful.  I often see in Steve:  “Jesus with skin on.”  Steve has been wounded by his past and an ex-wife who disrespected him terribly.  Regardless, he has rarely brought any vulnerability from that experience to our marriage.  He, too, has allowed the Lord to “restore the years the locusts have eaten” (Joel 2:25), rising up to become the spiritual leader God intended.  So glad he’s tall too.  I love looking up to my Stevers.

When the time is right, when we have submitted ourselves to the refining fire that can be the trials of life, when we are faithful to the calling the Lord lays before us, we too may be rewarded with blessings beyond belief.  Those blessings may not be what many think of as gifts or rewards.  For me and my beloved, those good things are the ability to overcome the wretched things of life in a way that actually deepens our love relationship together as well as our walk with the Lord.  My hope in writing this is that you are also seeking the One who knows your pain and loves you just as you are:  the person of Jesus Christ.  (Psalm 41:1-3)  He may indeed bring you an angel to minister to your needs, a “Jesus with skin on.”  He may bring you to the foot of His throne of grace a few times in desperation, alone.  I know that He will not frustrate you beyond what you can handle, however, and will fill your heart with unspeakable joy someday.  (Romans 5:3-5)

I am grateful to see the latter despite wretched illness.  I pray that you too, Gentle Reader, will be able to see all this and more when the time in your life is right.  (Ecclesiastes 3)  The sorrow will not be wasted, of that I am sure if we but keep our eyes fixed on the face of Christ.  We may even get a sweet snuggle with someone special too!

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Addendum:  A new medication is bringing new hope.  I’m down to about 1 attack per day and they are less intense.  We are holding onto hope as this journey of illness appears to be changing.  Praise the Lord!!!!

Sometimes the night just passes unnoticed

SLEEPING_GIRL_TS4023-550x579Psalm 121

I will lift up my eyes to the hills— From whence comes my help? My help comes from the Lord, Who made heaven and earth.

He will not allow your foot to be moved; He who keeps you will not slumber. Behold, He who keeps Israel Shall neither slumber nor sleep.

The Lord is your keeper; The Lord is your shade at your right hand. The sun shall not strike you by day, Nor the moon by night.

The Lord shall preserve you from all evil; He shall preserve your soul. The Lord shall preserve your going out and your coming in From this time forth, and even forevermore.

I’ve heard this called the bedtime psalm.  Sure beats the one I grew up with:

Now I lay me down to sleep

I pray the Lord my soul to keep.

If I die before I wake,

I pray the Lord my soul to take.

The childhood prayer above offers me no comfort during a night like last night.  If the worst outcome of 15 or so total hours of noxious symptoms last evening and overnight were to repeat itself, I would need the truth of God’s word on my mind and in my heart.  Some wishful rhyme uttered as a “prayer” has only the fleeting power of a feel-good sentiment.  It wouldn’t refresh my husband enough either to feed me or carry me to the bathroom again.  Only God’s word has the power to transform our fragile lives, and I know He will transform mine someday.  I know he sustains my beloved with supernatural strength.  Only God’s word provides sustaining grace for all who suffer, for when sleep will not come.

This afternoon I must somehow get to 2 medical appointments despite the lethargy, pain, sweats, stiffness, low grade neck headache, ringing in my ears, and so on.

Oh Lord, I do hope these trials end soon!  Maybe I can nap later this afternoon?  Yawn.

You have made a difference!

I am grateful for the love, care, and support of some special folks who have helped me make it through nearly two years of serious illness.  I am also sad for those who have left my life or misunderstood this time in my life.  Hardship is not contagious folks!Mom's 75th B Day Party

First, the good stuff.  The person nearest and dearest to my heart is my beloved husband, Steve.  I am amazed when I gaze into his blue eyes at the sincerity of his love for me and for the Lord too.  When he comes close and holds me through a tough episode, cradling my neck in his hands to comfort me and minimize the trauma of various noxious symptoms, I am humbled!  There are not many people on the planet that would do this even for a loved one two years “down the road.”  Many would become exasperated, angry, indifferent, or worse by now.  Thank you Lord for this amazing man.  Thank you for my “Jesus with skin on.”

The next group of folks closest to the fire, so to speak, who have helped me to survive are my Lyme Literate Medical Doctor and our local Lyme disease support group (who are largely his patients).  You understand!  You get it!  And you believe me!  When my Doc calls me on a Saturday with the name of a pharmacy where I can get a medication almost $100 USD cheaper, I am grateful!  When it’s my turn to share at our monthly Lyme group meeting and my tummy is happy from the yummy snacks we bring that fit our special dietary restrictions, I feel loved!  And then when we exchange text messages or Cindy, or Roberta or Diana offers help with a special task, I am humbled.  Oh how I pray I may serve you too in your time of need.

A few dear friends and family members have witnessed and endured much of the past 10 years of this incredible journey of transformation.  I love the kind of relationships that go on no matter what life brings, picking up when we meet again as if no time has passed.  I hope my brother Mike, Brenda, Deb, Kinsey, Patrice, Mary, Judy, Maria, Tami, and a few others feel the same way?   Now that my parents and grandparents have passed away, I appreciate even more my extended family including my Other Mom, Other Dad, Uncle Dave, Aunt Lori, Aunt Patty, and Aunt Shirley.  I love you and thank you for investing in my life.

There’s a special place in my heart for the online community.  Whether I met you on a Facebook Lyme forum, your blog or when you commented on my blog, I credit you with keeping me sane at the odd times of day when no one else cares!  Thank you for your “likes,” for following this blog, for your comments and suggestions, for your time.  The greatest gift from a friend is a gift of his or her time.  When you reach out to me I know that I am not alone.  While the internet can be a ruthless place, I am grateful for it’s goodness, especially when I am awake in the middle of the night.  It’s pretty cool that my buds in the UK or West coast of the US are online when I am!  Please let me know how I may return your kindness.

I’ll save the best for last.  In the interim, I’ll briefly state my sorrow for those who have chosen to leave my life.  He or she will not be reading this so I won’t waste much white space gushing this or that emotion.  I am grateful that when I have endured hardship in the past, I learned the importance of letting go of the people, places, and things that leave my life at these times.  Perhaps saying goodbye makes room to welcome the blessings that are to come?  Thank you for all that you have taught me.  Godspeed, dear ones.  I’ll be here if you want to stop by for a chat or walk around the block in the future.  As for the things, well they are just things.  So long.

And now for the best:  the One who knew me and my frame before I was born, fearfully and wonderfully made by Your guiding hand.  (Psalm 139)  I love you Lord and thank you for saving me from my path of destruction as a young woman.  I praise you for crafting the incredible events of my life to bring me more blessing than I could have ever imagined in the middle of my journey on this earth.  While I do not fully understand the sorrows that have come, I am convinced that You hold my tears in your hand, counting and caring for each drop, every pain.  I have never felt alone.  Thank you Jesus for bringing me to Your throne of grace where I may dwell in Your presence now and forevermore.  Grow my trust in Your promises, Your plan for my life, Your will for me all that is around me in this world that is troublesome.  Come soon my Lord!

So for all of you and you and you and you and You who have made a difference in my life, I give thanks.   If I have screwed up somewhere, please let me know and consider forgiving me.   I want to make it right if I can.  And if any good comes from me, these blogs, or anything else, to God be the glory.  He is worthy to be praised!

Sneak Peak: Hope Beyond Lyme: The First Year

HOPE eBook Cover

Here’s an important peek into the eBook borne out of this online blog with updated material, bonuses, and references.  Stay tuned for publication information, coming soon!  Thanks a bunch,  Just Julie

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Final Thoughts

August 24, 2013

“Life is like a box of chocolates.  Sometimes you don’t know what you’re gonna get.” 

Remember this famous line from the movie, Forrest Gump?  (Paramount Pictures, 1994)  Yeah, I “get” this message when the day begins with renewed hope and generally ends, well, somewhere else!  Gratefully, the day is never without hope at some level.

Perhaps you have wondered what you would “get” when you were beginning to read this eBook.  Maybe you downloaded it because of the words, “Lyme disease” in the title.  I appreciate you wanting to learn more about it as it seems I too can never learn enough about this complex and almost sinister disease process that is so difficult to diagnose and treat successfully.  If you would like more information on Lyme disease see the About Lyme Disease chapter at the beginning of this eBook.  I also encourage you to go to the websites of the International Lyme and Associated Disease Society and Mercola.com

By now you realize that you have gotten something quite different from me than a Wikipedia description of this and other serious illnesses.  I am hoping that as we close here, you have seen how there can be more to a journey colored by a chronic sickness than the illness itself. 

Most importantly, I hope that you can see how much of a difference it can make to have a personal relationship with God through His son, Jesus Christ, when enduring a serious illness.  He has changed my perspective and transcended my experience over and over again in a way that continues to make a difference.  I could not go on without Him!  Life is just too difficult otherwise.

I hope that you have come to understand that you too can have this personal relationship with God by coming before the Father in prayer and supplication, in the name of Jesus Christ.  As we each approach the “throne of grace,” we must first acknowledge that we are imperfect, live in an imperfect world, and have an imperfect life.  The world is imperfect not because of our mistakes but because of its falleness and that is due to the presence of sin.  Sin in turn affects us no matter who we are as a part of our human condition (Romans 3:23).  We come to understand that we can overcome sin by admitting our brokenness, asking for forgiveness from the Giver of life, and accepting the gift of saving grace to wipe the slate clean:  He then restores us to a right relationship with God.  We are forgiven and free, now and forevermore.  (John 3:16)

The faith needed to believe this truth and go forth comes from reading and hearing His inerrant Word, the Bible.  (Romans 10:17)  When we do make a decision to believe, we enter into a relationship with the God of the universe (and with fellow believers too) that can never be taken away unless we denounce that Jesus is Lord.  We are saved from the guilt of our sin and our perspective in life changes.  We are never, ever alone again as we receive the indwelling gift of His Holy Spirit:  our Counselor, Our Guide.  We also embark on an amazing journey that brings peace, love, joy, spiritual gifts, blessings, and promises that will take us through everything and anything that happens on this earth.  We will not truly know what this is like until we make a decision for Christ.

And one day when our time on this earth is over, we will enter into His presence to live with Him forevermore.  We cannot even fathom the infinite glory of heaven in our finite earthly minds.  In heaven there will be no more suffering, no more tears.  Wow.  None! 

If you have not already done so, and would like to have a personal relationship with Jesus Christ, I encourage you to pray a prayer of repentance and submission right now.  In doing so, you surely will receive:   Hope Beyond Lyme.  And if you do, would you send me an email and tell me about?  I’d like to be among the first to welcome you into the family of Christ.

Take care, Gentle Reader.  Just Julie