June 2017


Has there ever been such a popular idea as “Me Time” I wonder?  I bought into it hook, line, sinker.  I wanted “Me Time” to recharge.  I wanted “Me Time” to work on continuing my education.  I wanted “Me Time” to listen to a popular podcast.

You know, there isn’t anything inherently evil about the idea of a little alone time.  I remember the part in scriptures where Christ withdrew from the crowds of people.

When Christ learned of John’s death, the Scriptures tell us that he withdrew to a solitary place and yet the crowds followed him, wanting him to heal, to speak, to tend to their needs.
Matthew 13-21 ~ When Jesus heard what had happened, he withdrew by boat privately to a solitary place. Hearing of this, the crowds followed him on foot from the towns. When Jesus landed and saw a large crowd, he had compassion on them and healed their sick.  As evening approached, the disciples came to him and said, “This is a remote place, and it’s already getting late. Send the crowds away, so they can go to the villages and buy themselves some food.”
Jesus replied, “They do not need to go away. You give them something to eat.”
“We have here only five loaves of bread and two fish,” they answered.
“Bring them here to me,” he said. And he directed the people to sit down on the grass. Taking the five loaves and the two fish and looking up to heaven, he gave thanks and broke the loaves. Then he gave them to the disciples, and the disciples gave them to the people. They all ate and were satisfied, and the disciples picked up twelve basketfuls of broken pieces that were left over. The number of those who ate was about five thousand men, besides women and children.

And so Christ, putting himself aside and that time he had wanted to be alone, served those around him out of compassion.  He then again withdrew –

Matthew 14:22 -Immediately Jesus made the disciples get into the boat and go on ahead of him to the other side, while he dismissed the crowd. After he had dismissed them, he went up on a mountainside by himself to pray. Later that night, he was there alone, and the boat was already a considerable distance from land, buffeted by the waves because the wind was against it.

In this passage it is not “me time” that Christ was seeking.  It was time with the Father.  He was seeking comfort, perhaps guidance, but his time was not self-fulfilling, but time spent with the Father.  We see again, in the garden of Gethsemane, Christ seeking time alone with the Father.

If Christ is our example, what does that mean to us?  It is obvious, as mamas, that there is always a crowd of little ones and sometimes big, seeking from us guidance, a need to be spoken to, healed, nurtured.  And it is taxing, especially when we are dealing with our own concerns, our own worries, our own needs.  And yet, we see Christ, deeply sorrowed over the loss of a beloved friend and later over his own impending death, spending time praying to the Lord and pouring out compassion to others.

Is he not the perfect example of what is needed and what is to be done?

I cannot help but go back to Mary and Martha.  I am a Martha through and through.  But let’s look at that passage:
Luke 10:39-42

She had a sister called Mary, who sat at the Lord’s feet listening to what he said. But Martha was distracted by all the preparations that had to be made. She came to him and asked, “Lord, don’t you care that my sister has left me to do the work by myself? Tell her to help me!”

 “Martha, Martha,” the Lord answered, “you are worried and upset about many things, but few things are needed—or indeed only one. Mary has chosen what is better, and it will not be taken away from her.”

I know how much work you pour into your children and how much work you pour into your home.  I *know* this.  As the mother of eleven children, and nine of them in twelve years, I know that when you sit, the laundry sits.  When you sit, the dishes sit.  When you sit, the children keep moving.  😀  I know these things.  I also know, from my own experiences, that unless you want to burn out, it is NEEDFUL that you sit at the feet of God and refresh yourself from the scriptures and pray.  I have been there, I have done that, and it is not a place I wish to revisit.

I also know that selfishness breeds selfishness.  When you indulge sin, it begets more sin.  Have you ever noticed that “Me Time” leaves you hungry for more? Or that you feel out of sorts or discontent when you come back, longing for the next time you can get away for some more me time?

Martha needed to stop.  She needed to sit.  She needed the Word of God.  She needed to pray.

There was time for dinner, time for dishes, time for cleaning up… Trust me, those dishes weren’t going anywhere.

I have often said the doing needs done.  And it does.  But who are we to believe that the 24 ours in a day that God gives us is insufficient for what He wants accomplished in our homes, our lives?

 

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It’s been three months since I last wrote a post.  That second EMG went well.  It did not show denervation.  A muscle on my calf appears as though it is atrophying but no denervation and thus, I have avoided the ALS diagnosis.

The University has recently given me the diagnosis of Motor Neuron Disease / probable Primary Lateral Sclerosis and the “clock” has begun.  90% of PLS patients will develop Amyotrophic Lateral Sclerosis, ALS, Lou Gehrig Disease.

Because of the small amount of Lyme antibodies in my spinal fluid, we also chose to travel to Minnesota to see a Lyme “literate” MD and be tested with the full Western Blot for Lyme.  Coincidentally or not, I did test positive for Lyme in four bands as well as one Indeterminant.  If the indeterminant band had been positive I would have been CDC positive.  I had a tick bite around the summer of 2008 which was insufficiently treated with doxy.

All across this wide web, there are whispers and sometimes shouts of Lyme “induced” motor neuron disease.  Is it real or supposition or the hopeful dreaming of patients who have no real hope in ALS and seek something else?  I have no idea. I’m not especially learned, not especially wise, and not especially gifted in these areas.  But this I know…. Try we shall.

We’ve had many ask so what do you have?  ALS?  PLS?  Something else?  Lyme?  Truth is we don’t really know and this is the best we can explain:

I have been diagnosed by the U of Iowa as having Motor Neuron Disease.

It is really less of a “disease” than a catch-all of symptoms –  Motor Neuron Disease comes in two flavors – either you have Primary Lateral Sclerosis OR you have Amyotrophic Lateral Sclerosis.

The difference:

PLS – means your UPPER motor neurons are degenerating. We absolutely know, with no doubt, that my UPPER motor neurons are beginning to die. There was never any question of this.

ALS – is different in that your UPPER AND LOWER motor neurons die off. We will know if I have LOWER motor neurons dying when my nerves begin to die and muscles atrophy in my leg (and eventually both legs, both arms, chest, etc.) IF that happens then they will change the diagnosis to ALS.

What now?

Well, when you have UPPER motor neuron failure but NOT lower motor neuron failure they give you a temporary diagnosis of PLS. This is what I have right now. They know that most patients (90%) will develop LOWER motor neuron failure but there are those that stay with just UPPER motor neuron failure. Those that just keep upper motor neuron involvement get a permanent diagnosis of PLS. Those that become both upper AND lower involved get the new diagnosis of ALS.

What about the Lyme?
Okay, so the confusion here is that we think this is Lyme.
We KNOW U of Iowa is correct. I have PLS. BUT we also know that many doctors across the country believe that there is a CAUSE for PLS/ALS – it is not random. Some people get it more than others – usually you are over 50/60, men get it more than women, and military people get the most of all.

There are a lot of theories. Vaccines take a big chunk of blame. Mercury in fillings take another chunk of blame. It is the idea that some people are more sensitive to toxins and thus as they absorb heavy metals from vaccines & amalgam fillings, their motor neurons weaken and die.

And then there are those who believe that Lyme causes SOME ALS/PLS.

These doctors are gaining more and more support.

So if it is Lyme, it is curable right?
Lyme is VERY curable….  – In the EARLY stages. You let those nasty little Lyme bacteria grow and get stronger and they will try to kill you. Lyme is a bacteria, an especially bad one – a spiral shaped monster called a spirochete.

As they reproduce and get stronger they choose an area to attack. For some it is the heart. For some it is joints. It seems more rarely, the little beasts chooses the brain. This is my case IF this is what caused my PLS and it is hard to cure because antibiotics have a challenging time crossing the blood/brain barrier and killing all of the spirochetes.  There are also researchers who believe that the tick transmitted a nematode at the time of the bite and that the nematodes harbor the Lyme, protecting it from antibiotics.

Yes, I know a dozen people who have Lyme and have been cured. I’m happy for them. Unfortunately, I know absolutely NO ONE who has neuro Lyme and I know no one who has had MND and Lyme and been cured. So this is a shot in the dark. Even my Lyme doctor in Minnesota has never had a Motor Neuron Lyme patient.

We are very nervous because what she has ordered for me could make me far worse. Or it could help – a lot. By far worse we do mean death. So it isn’t just a matter of, “Geez Kelly, take the antibiotics. There are patients who took these antibiotics for Lyme (ceftriaxone) and it did kill them and/or accelerated the Motor Neuron Disease.

So please know, that while we are making these choices, we take none of them lightly and we are weighing all of options. It might look like we are doing nothing. That is not the case.

It might look like we should do something else. Please know that we are doing the best we can with the situation we have been given.

The drugs they want to give me are $850 EACH DAY. Blessedly, my insurance is going to pick up a good chunk….. For a short while. But, after that , they will stop. There is no “approved” drug treatment for neuro Lyme so they are under zero obligation to pay for it. And unless someone knows of a half million job for the hubby, we are making the best decisions we can under these circumstances.

I FIRMLY beleive that God has His eyes wide open. He did not turn away for five minutes or blink while I got this disease. I absolutely know that He chooses to ALLOW us to go through trials for His own glory. This is supported in scriptures, that His believers will go through trials and tribulations and that these will change and mold those people to be more like Him.

I am requesting prayer.

Specificially:

Courage. We are forbidden by God to be anxious. We are to turn everything over to Him in prayer and thanksgiving.

No Bitterness – this is really hard for us.

The best case scenario for me currently, according to the University, is long term paralyzation. We hope this is just PLS and that it will take the next twenty years for me to be fully paralyzed. Or, that Lyme treatment can stop this.  Right now I am gardening, playing, spending time outside, doing projects.  I have people saying things like, “I’m so glad you feel better,” and “Wow! Maybe the doctors are wrong.  You’re doing great.”  Ya’all, I never felt BAD. 😉  I feel like ME – okay, maybe a slightly weaker version of me, a little unbalanced version of me, but still me.  And I surely am not going to sit on my tailfeathers and get weaker by lack of use.  Plus?  Plus if I know this is my last year to garden, or my last year to play with my kids, or my last year to………..  Why would I choose to sit on my couch and fuss?  Nope.  No.

Obviously we would love for me to be fully healed, God willing. But we also have to talk to the kids on their level about Mama being sick and make a lot of hard decisions. No one feels this more than my husband, myself, and these precious kids. Pray for all of us please.