The Tick Wins

So, I am going back into treatment. I had a feeling it was coming, after the last episode of swallowing,tongue and speech issues. Part of me wants to treat it like taking out the trash, or giving someone a ride to school, you know, no biggee, but deep inside, I know it means so much more, and that's what I am grappling with.
 
Why do I have to analyze every aspect of my life? 
You know, it is what it is. 

Treatment to me means:

• My life is not my own- I will have to go along with the whimsies of the meds
• My children and husband will have a new mommy for a while- which incidentally means a messier house, with less home-cooked meals
• Some people won't GET it- I mean I will hear.. "I thought your were over that thingy- what did you call it...Lyme?"
• Die-off
• Probiotics and stomach aches
• Bloating
• Lots of PJ days- hmm...that might be kinda nice for a change....
• $$$
• Defeat- hmph... defeated by a minuscule little tick
• Can you think of anything else? The list goes on....

That's it for now.  I will fill you in when the fun times begin.
To wellness,
Maryalice

MY LYME FRIENDS

Four years ago I didn't know what Lyme disease was, let alone that I would have Lyme friends, or lymies.  In the world of Lyme disease, I suppose it is much the same as the world of any disease.  Those that you meet within your circle of recovery become your friends. 

On any typical treatment day, I might sit in the IV room with C, S or J one day, or K and E the next. We all had a story.  We all had been bit at one time in our lives and some of us didn't even know it. Most of us had nothing really in common except being bit.  Some of us had IV's with 2 grams of rocephin, some were just getting started with 1 gram.  Some had DMSO mixed in  and smelled of tomato juice or garlic.   Others came for a bit of energy and got a Myers Cocktail. We all knew what we needed and we all wanted out of there and done with Lyme as soon as humanly possible.  None of us had anywhere to go. All of us had been robbed of our lives. 

Some had IV's wrapped in foil to preserve the ingredient.  Others had chelation drips, Vit B or C drips, or Hydrogen Peroxide drips.  Some got stuck 2 or 3 times, if they couldn't find an unused vein, or if they just needed 2 different drips.  Some brought home-movies for the 2-3 hour wait- others music. Many came and hooked up for a much needed nap.  There were lavender and flax seed hot packs, camouflage band aids, rubber tourniquets and plastic surgical tape.  Some lymies had babies at home that in turn were infected with borrelia. Others were business owners, husbands, wives or parents that used to have a life. Some couldn't be understood because their speech was affected.  Others had rashes or couldn't walk.  Some were 16, others 50 but looked 80. 

One of my favorites was J.  He shuffled in, slumped down in a rocker-ankles the size of tree trunks. His knees and hands rattled away. He chatted to me in garbled phonemes. Turns out that he was diagnosed with Parkinson's originally, but his treatment for Parkinson's by another doctor only exaccerbated the Parkinson's. Five years ago he was a regular guy working in a mill.  A simple lab test discovered Lyme Disease, and now it may be too late to turn the ship around.  Progress is slow.  One IV at a time. ((update... Johnny passed away from Lyme...)) 

One day I met the mirror of my new life.  I sat there, hooked up, staring at my Lyme friend that had Lyme induced ALS.  His speech was limited, due to dysphasia- impairment of speech due to neurological brain damage. His gait was slow and shuffled.  He looked at me with his tender eyes, unable to speak and I just wept. ((update... Ernie passed away from Lyme...))

There are lots of Kleenex's in the treatment room. 

I love my Lyme friends.  I know they will always be there if I ever need them again.

AWWW, TO BE A MOM, NOW THAT IS SOMETHING!

" I love my children sir, and the thought of living without them is like living without air." 
Mrs. Doubtfire

When i was a little girl, i knew exactly what i wanted to do when i grew up.  i would travel to far away places, go to college to be smarter, and find a way to be successful.  well, i have traveled here and there, gone to college, and been successful in many things.  the thing that makes most sense to me though is something that i never really put much thought into.  being a mom.  being a mom to me is the most amazing gift.  it is like Christmas every day.  it is better than fame, fortune and even ice cream!  i am so humbled that God would grant me, little ol' me, the blessing to be the Wallis kids' mom.  who knew?  in all of the details that our Father in Heaven orchestrated, how truly humbled i am that he found favor in me, and gave unto me the most incredible children under Heaven.  Amen.

PONDER THE PATH OF THY FEET

Yesterday during church I participated in an excellent discussion about Priorities. The talk, originally from Julie Beck Women's Conference 2010 states that "When priorities are out of order, we lose power".

Consider our Daily Choices... Now, humor me and  make a list with 3 columns:
Essentials: Put things here of Eternal nature- prayer, church, scriptures, love, callings, etc.
Necessities:Put things here that are "have to's to live", eating, sleeping, hygiene, shopping, laundry ( I suspect this is where most of us live, most of the time)
Nice to do: Put things here that you enjoy doing ie. hobbies, pleasures, etc.

One young lady commented that when she was stressed out, she found herself filling her time with "Nice-to-do's", but later while on a mission, her life was filled with "Essentials" and she found so much joy in serving others, it naturally became her "Nice to do's".


Another comment I found insightful: 
Self Worth does not depend on the length of your to-do list! 
How many of us find ourselves busy beyond belief and accomplishing little?

Take a moment today to Ponder on the Path of thy Feet. 
Blessings!

Shutting the Door to Lyme--- Forever?

I stand behind a heavy door that reaches to the top of the universe, ready and more than willing to slam shut the illness that has racked my body for the past several years.
Questions come to mind:

• What do the little twitches and random numbness in my cheek mean? 
• What about the bouts of fatigue?
• Is there really such thing as remission with Lyme?
• What if I get bit again?
• Will I ever be 100%?

Knowing most of the answers,  I resolve to do what I have been taught to do:

• Keep my chin up and continue to pray.
• Count my many blessings.
• Keep my covenants and remain faithful.

What else can one do?  As I reflect, I seek for answers in my journal and realize that I am much further along than I expected, and for that alone, I rejoice. 

Journal dated December 5, 2009:
It has been almost 1 1/2 years since my last entry.  It has pained me to write, as I really do not want to actualize the words that I must write.  As the days and years have gone on and I see the purple edged spine of my lonely journal, my insides groan and I resist.  Why do I resist?  I am a coward, I suppose.  Perhaps by writing, I will reveal things I don't want to believe myself, however, time is of the essence, so to speak and I must write now, before the time may come that I won't be able to anymore. I am scared.  For the 1st time in my life, I face the fact that the keys of mortality are jangling in front of me and I am simply not ready emotionally to face that.  But, come what may, it is a fact of life, that God gives it, and at some point is taken from us.  But thank the Lord for eternal life, and eternal families.  How grateful I am for that.  My health has taken so many twists and turns but continues to decline, as I see it.  In 2005, I was vibrant, active, and healthy and walking 15 miles minimum a week, organizing conferences, writing a book and homeschooling successfully, I was primary president, I had life wrapped around my finger. Today, I am sedentary, my speech is slurred, my tongue is numb, my throat won't swallow, I can't remember things and I say things backward, use the wrong words for simple things, have labored breathing and am unable to participate in activities, exercise or organizations.  I can't lead or take charge of most things.  My gait is unsteady, I have no appetite, my eyes hurt and sting and I can't see when I get up.  I am taking about 25 products to keep my brain healthier and being treated for late stage disseminated Lyme disease, Epstein Barr Virus, chronic fatigue syndrome, a bacterial infection in my lungs and now my symptoms are manifesting ALS.  More than anything I want to be well again.  I want to raise my family, be a wife to my husband and live. I will try to be positive and happy and keep a good perspective. It is scary.  The things I read aren't good and the prognosis is awful.  There is no cure.

I am turning the knob now............

My Lyme Rollercoaster

This past year has been quite the rollercoaster ride, and I hate rollercoasters.   I have been in treatment for lyme disease for the past 2 years and  many days I felt like I simply wasn't going to make it.  I thought people thought I was just faking it.  My body was not my own and somedays, if it weren't for my children and husband, I wanted to die. I can remember one night, really late, laying in bed and thinking about my life, and the quality of my life and trying to swallow, and it was so hard to swallow!  I started to cry and it was one of those uncontrollable cries. I couldn't stop crying.  I wondered if I might not be able to breathe through the night- what if my tongue got stuck in my throat because it was so numb?  My sweet husband just held me and stroked my hair.  We both had a good cry together in the middle of the night. These are the memories I have from this dreaded disease.  The following are some lyme notes that I kept when my symptoms were at their worst and manifesting ALS- Lou Gehrigs Disease.


11/18/09 through 12/10/09  Dysphasia, tongue numb, balance
12/12- dysphasia, tongue numb, balance, foot falling asleep, fatigue 
12/14- 1000mg IV - after IV felt good for a few hours
12/15- Tired, slow, tongue swallowing issues
12/16- good day, IV in afternoon, Tired but energetic; balance improving
12/17-12/23 IV's daily
12/22- swallowing issues coming back, balance poor, fatigue
12/25- nap 2 hours, balance, tongue tingling, swelling, thick, swallowing issues back
12/27-balance, eyes sore, fatigue, nap, yeasty, swallowing issues
12/28-severe headache,right shoulder pain, fatigue
12/29- arm hand stiffness, balance poor, fatigue
12/30-swallowing slow and numbness bottom/back of tongue , balance, fatigue
12/31- tongue tingling bottom and back, balance poor, legs sore and stiff


This continued until Feb 1 when my balance was restored!  No more walking around holding on to things.  The following 5 months consisted of IV's 4 days a week along with 5 other oral antibiotics.  My last IV was May 19th.


I Hate Lyme Disease, but dare I utter that I am getting better?

Just Down a Couple Flights

I' m falling out of Heaven,

Just down a couple flights

I don't remember this ever happening before.

Inside of me I want to keep falling,

part of me that is.

The other side doesn't want it all that bad.

I'd like to clutch my Bible and say to it,

Motivate Me, Read me your stories

but I can't right now

because I am falling out of Heaven.

I wrote this poem when I was a junior in high school and trying to find my way. Sometimes I find myself still trying to find my way. Don't we all?