One Step Forward, Two Steps Backward on a Diagonal

Still working with the new allergy free diet and have cooked someone’s pet rabbit three times now.  Just kidding!   Refer to Rascally Rabbit blog posting for details.

For four whole days I had fewer seizure-like tic episodes; most were tiny jolts for less than 2 minutes total at a time.  One day I HAD NONE!  I had not had a break like this one in 7 months!  Then everything changed.  Not sure what caused the change exactly but on Friday I had a two-hour episode plus the usual ones when falling asleep at night or for a post-treatment nap.  Geez.  I was hoping to take the dog out for a walk on the 60+ degree sunny day we had on Friday.  Instead I spent it in bed.  The headache was menacing.  I’m not able to take anything for pain right now so it was a major bummer.  The Epsom Salt/Baking Soda bath helped some.  Geez again.

In those 4 days I realized how altered my life has become.  I had no idea how much was altered until many abilities and returned to near-normal for a short time.  I was able to handle the many little frustrations that occur over the course of the day, like needing to get a tool to open a stubborn container or stop what I am doing to answer the phone.  I didn’t cringe when a closing door made a loud noise or the dog continued to bark at the neighbor kid coming home.  I went from one activity of daily living to the next without thinking about it ahead of time.  No need to plan what I would do next or to prioritize what was most important in case I got sick in the middle of something and couldn’t finish it.  I just got busy and got everything done without a “To Do” list.  My diet had become very complicated so I spent time making weird food and even got creative doing so.  By the end of the four days, I was making some food for my family as well as myself, not thinking about what I was missing.  The headaches, pain, ringing in my ears, nausea, etc. diminished and my sleep schedule started to become more regular instead of fractionated.  My sense of humor increased and I could begin to appreciate beauty, little things, blessings.  I got clarity on a grant project that has largely been on hold since April and presented a review in front of our homeowner association Board.  A new jewelry design came to mind and came to fruition just after the symptom-holiday ended.  (After all, I’ve made most of my pieces whilst feeling sick so I pushed to finish the task.)  And then it was over.

Tonight I tagged along with Steve to run some errands, feeling sick.  The Lord became my strength and my husband my confidant as we both faded by the time we were on our 5th errand.  (Steve has a bad cold and I pray that I don’t get it too.)  Times like these is when you really notice the high sensory stimulation/sensory overload of the grocery store!  Wow.  So I did what I had to do and put my mind on auto-pilot and finished shopping.  Then the race against my energy clock continued at home to help put everything away (thank you Christina!) make dinner, make my allergy-free foods, clean-up, and get to the computer before I would collapse.  Made it.  Here I am.  Doing it sick.  Just had another “sweats” episode.  Now I’m chilled.  Baby, I’m back.

Next week I’ll meet with the consultant who helped identify the food sensitivities as well as my Lyme Literate Doctor.  Hopefully we’ll be able to tweek a few things.  Oh how I want those 4 1/2 days back!  Well this is Lyme and its complications.  One step forward, then comes two steps in any direction possible.

I just don’t know how I would survive the crushing disappointment without my faith in Jesus Christ.  He is my Rock in troubled times.  He is my Shepherd, guiding me when my brain or body cannot.  He is my hope, my future, my reason for persevering.  He gets all the credit for the good and none of the blame for the bad.  I know He grieves for me in my time of illness.  I know He is close when I but say His name, seek His face.  He is with me, my Emmanuel.  Oh my Jesus, I need you tonight.  Meet me here and hold my heart.  This is all bigger than me and infinitely smaller than your Omnipotence, Omniscience, Omnipresence.  I need you to catch my tears.  Thank you, my King.  I think I’ll be o.k. now.

…we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit which has been given to us. (Romans 5:3-5)

3 thoughts on “One Step Forward, Two Steps Backward on a Diagonal

  1. While waiting for an allergy testing appointment today, my doctor called with some important test results. We were able to integrate the results into the testing and develop some helpful strategies to help manage my symptoms. Now that’s the Lord! Thanks for your prayers my gentle readers! Yous da best! Julie

  2. Julie,

    I enjoy reading your blog. I am sorry that your struggle with Lyme is so intense — you are in my prayers. I believe that many of my husbands physical struggles (not as severe as youirs) are caused my Lyme. Bill has finally agreed to see Dr. Jakacki and has an appointment March 13th — he saw Jakacki years ago but will be considered a new patient now. Hopefully and prayerfully Bill won’t get much worse before then

    Thanks for your blog. Please send my greetings to the Lyme support group for me when you meet with them. I miss seeing everyone.

    Warmly,
    Barb

  3. Dear sister Julie, what a blessing it is to our faith when we look at yours. I think I understand a little better, why Paul was so blessed when he heard about the faith and love of the Ephesian and Colossian churches (Ephesians 1:15-16 & Colossians 1:3-4).
    We are praying with you and Steve.
    The little bits of humor and hopeful expressions that come through in the cartoon parts of the blog are great! I think I like the two dog’s having a conversation the best…
    God bless you sister,
    barkers

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