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?

COURSE CORRECTION

At various times in the travels of our lives comes a time of redirection. Redirections can come to us in many ways. Perhaps we are seeking a new Job or Relationship. Perhaps it is even more personal- maybe a call to Repentance or Forgiveness-

Some call this Course Correction. How many of you have used a GPS? If you plug in a destination, the GPS generally gets you where you need to go. But you know that little voice that speaks to us when we go off track and says "re-calculate"? That little voice is similar to the one we hear inside our head when we receive new information. The opportunity is then ours to either change course, or stay the same path. Occasionally, recalculation is due to a new roadway that a GPS is unaware of- In our personal lives, I would relate that to a new pathway that has been Course Corrected, and replaced with a more improved and positive pathway.

Course corrections are rarely comfortable, but nearly always necessary and healthier in the long run. With redirection, we may find a new friend, a job, repair a relationship, or seek a new destination, that we may never have known was possible.

Could it be that little word called- Change that we are running away from?

5 SIGNS OF A CONSECRATED LIFE and OTHER GREAT IDEAS

I love to hear talks that are to the point.

Today I listened to our church's semi-annual conference for 4 hours and heard multiple talks just like that!

It was a welcome breath of fresh air. One favorite talk by

Elder D Todd Christofferson gave us detailed reasons why these 5 subjects are signs of a consecrated life- Is it any wonder to you ???

• PURITY
• WORK
• RESPECT FOR OUR LIVES
• SERVICE
• INTEGRITY

Another favorite - Elder Dieter F. Uchtdorf- said:

Ask yourself: what things matter most to me??

Answer - God, Family, Fellow Man, Ourselves

So- Where have we drifted for a 'more excellent' way??

Loved this: " Simplicity is the Ultimate Satisfaction" Leonardo deVinci

and finally:

L-O-V-E is spelled T-I-M-E

To wellness- MA