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)

Rascally Rabbit!

Rascally Rabbit

Cooked my first rabbit roast yesterday!

No, I didn’t shoot it!  Picked it up at the local meat market when some testing showed that it’s a type of meat that might help calm my nerves, in addition to some other, higher fat foods.  Sounds like a ketogenic diet!  Maybe that’s where I’ll end up.  The seizure attacks are menacing and we’re still investigating, testing new strategies to diagnose and treat my noxious symptoms.   At least this Sunday was the best one I’ve had in 3 weeks!  Thank you Jesus.

It was weird rubbing a new, unfamiliar dead animal with a seasoning mix.  Somehow I don’t have this reaction to chicken!  After all, a chicken breast looks like the breast of a chicken.  I should be queasy but I am not.  A dead rabbit looks like a rabbit and somewhat like a dead cat.  Ewwwwww!  Just too close to our domesticated friends I guess.

The crazy part was our dog’s reaction.  Elle was on alert as soon as the package with the rabbit in it came out of the refrigerator!  I hadn’t even unwrapped it yet!  Did she know it was the (domestic) remains of the furry menacing critter she LOVES to chase at breakneck speeds through the neighborhood? Somehow, I think she did.  And I don’t mind it either because the wild rabbits eat my garden plants.  I would shoot them with a .22 if I could.  But I’m not that great a shot, yet, and it’s dangerous (and illegal) to shoot anything in a neighborhood.   I just wish she wouldn’t play with the bunny once she catches it.  Sends mixed messages you know.

After dinner I cleaned the rest of the meat off of the cooked rabbit.  It was actually very tasty:  a cross between chicken and crab meat and kind of sweet.  I understand that wild rabbit tastes different.  I’ll remember that if I’m ever in a position to eat wild rabbit.  Anyways, I gathered up the tendon and other tissue scraps and tossed them into the dog bowl of the now very attentive German Shepherd on guard.  “Dead rabbit!” was my command to her as the flesh hit the bowl.  She needs to know the delicacy of dead rabbit for when she’s standing guard in my garden.  I wonder if she got the message?

The Throne of Grace

He’s got the whole world in His hands

So much to let go.  So much that still haunts this troubled mind and body.  Troubled?  Yeah, a side effect of battling an illness that affects your central nervous system.   Negative emotions are magnified, fears are stronger than they need to be, stress responses come more easily, and a cynical attitude creeps into more and more moments.  It’s a battle and little of needs to be mine, actually.

As a believer in Jesus Christ, we have THE warrior on the throne, can embrace HIS spiritual armor, and trust that HE will be the victor in the end.  He promises all this to those who love Him and call Him Lord.  It honors Him to call upon His name with our praises and requests.  Remembering this fights against the workings of my brain these days a little more than the distractions and temptations we all face.  No, I’m not special.  I’m just selected!  And I get to write about what I learn along the way!

I used to have a God Box.  It was a tool introduced to me during my years in Al Anon Adult Children of Alcoholics’ meetings.  The Lord used 12-Step meetings as a first step to finding a personal relationship with God (AKA Higher Power); I now know God as my Savior, Jesus Christ.  By writing a prayer request, troubling thought, or need on a slip of paper, I had a symbolic way of turning people/places/things over to Him when I put the paper in the God Box.  My Box was a little plastic folder with imprinted with a world map.  Somehow it seemed significant to me as a reminder that the Lord is everywhere, cares about everyone including me.

So this blog is another form of a God Box.  Here’s the list on my piece of paper today:

Lyme Disease.  Treatment decisions.  $250 per week out of pocket for medical expenses.  Restitution I feel my ex-husband owes me.  Amount of money I was entitled to but didn’t take from the settlement of my father’s estate.  Daily physical pain.  Dreams for my jewelry business.  Upcoming craft show.  VISA bills.  Yard work I’m unable to complete.   Last few CEUs for my OT license that need to be done even though I ‘m not working.  Seizure attacks.  Headaches; will the new OTC med. that worked for me yesterday work when I need it again?  The need to exercise and the intolerance of most exercise.    Oh dear.  There is so much and it escalates to near panic if I don’t stop when the avalanche starts.  I’ll stop here.  I need a good word badly!

15 For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. 16 Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.  From Hebrews 4 (NIV)

Lord I give you these heartaches this day.  I lay them at Your throne of grace.  I pray for your mercy and help in my time of need.  I also place before you the readers of this blog.  Bless them, Lord for caring about me and perhaps considering the role You may have in their lives.  I pray that each one would come to know you as Lord, lover of his or her soul, friend, and sojourner through this life.  Strengthen those who already know You.  For Your glory, Lord.  In Jesus name.  Amen.

They say it was sunny outside today

Sunny?  I did see it through the curtains this afternoon.  Yup, it was sunny.

Rainy the other day?   Saw the rain in the sidewalk cracks when getting the mail.    Yup, it rained.

Indian summer with weather in the 70s yesterday?  Let’s see, I was so sick driving to some important errands that I hardly noticed.  Yup, I think it was warm.

Composted a few flower beds?  My wonderful husband says the beds in the front of the house are now done.  Yup, landscaping is getting done.

Does anything help me to feel better anymore?  Epsom salt/baking soda bath at about 10:30 p.m. then showering this evening.  Yup, got me dressed and moving as far as this computer.

Baby shower for a sweet friend this afternoon?  Saw the pictures on Facebook.  Yup, it went well without me.

Sure is a different measure of living, this Lyme thang.   Now let me try another way of looking at thangs:

The sun warmed the bedroom calming my temperature fluctuations this afternoon.  Yes Lord!  The sun shines through an October sky warming me well.

A gentle rain brought nourishment to some late vegetables and the re-potted flowering kale on the porch.  Yes Lord, Your watering prepares all the plants for the harshness of Winter.

Warmer weather diminishes the pain in my body and the sunshine carries me through the day like nothing else.  Yes Lord, you are the glorious Creator, designer of all.  In your arms, nothing is wasted.

Five dollars bought a truckload of rich brown compost to nourish our garden beds before they go to sleep for the Winter.  My beloved got things started today.  Yes, Lord, I am grateful and can “taste” the cucumbers of 2013 already . . .

A long soak in a hot tub is an ultimate treat for relaxation of the mind and body.   Sleep can come easier:   rest, and restoration.  Thank you Lord!  Ahhhh.

What a joy to see a new life in the making, bathed in the love of family and the Lord.   Hope she’ll like my gift and love to be sent along too.

Guess it’s a matter of perspective, eh?  I am weak.  Lord, help me see with Your eternal eyes, Your eternal heart.

It’s peaceful tonight

Somewhere in the world, it’s peaceful tonight.  Not so much in my heart.

Earlier today, the Doc offered to pull some consultants at a special conference into my case and I felt honored.  Honored, yes.  At peace, no.  This means more evaluation, opinions and risky treatments.   Even the generic for Valium isn’t enough to calm my fried nerves these days, to prevent seizure attacks.  The drug actually made everything worse this past weekend.  Twenty-eight hours of noxious symptoms with 2 breaks of about 3 hours each!  And I felt like I had the flu during this “breaks.”  No peace for the weary.

I’ve stayed up unusually late this evening because I just can’t face the seizure-like tics again tonight.  Lord have mercy!  Will I make it all the way until dawn?  The episode earlier today was discouraging since I knew that I would not have a very long time to rest afterwards.  Had some medical appointments and had to be up and going before 3:00 p.m. in the afternoon.  I know, poor me.  In bed til late again.  It was five hours of sleep in a 4-hour and 1-hour segment and it’s a weird thing when it all comes after 5:00 a.m.!

Then again, there was a peace within me at church this evening.   I stood up, thanked everyone for praying for me, and asked for prayer over the new consultations.  I’ve been to the Wednesday night service twice in the past 2 months and Sunday morning worship the same amount.  Tonight I not only got to sit with my husband and be his wife in church, I gratefully got to go out to eat dinner afterwards too.  Subway feels like the finest cuisine in town when you haven’t been on a date with your beau in a very long time.  I love Steve so much!  Last night he held me close until I fell asleep finally at 5:00 a.m.  That’s love.

So Lord, you’ve allowed so many difficult times in my life lately and yet I can see sweet moments too.  The little things mean more again, a lesson that I have benefited from many times.  I think I’m going to borrow your peace tonight and place it in my heart until I can find my own.  Thank you for some time out with Steve and doing some creative work this evening.  I probably should have been sleeping, I know.  I am weak.  You are strong.  Be my strength once again and get my hind end to bed already!

Psalm 121

New King James Version (NKJV)

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.