I'm Scared - Choosing Faith over worry.

It's 3 am and Bob wakes up. He has been moaning in his sleep and now he is awake. His body is suffering with micro tremors, I can't see them, but he can feel them and they have awoken him.

He asks me if he took his scheduled pills?

 Yes.

 When are the next ones due?

 6am.

 Too long!

 I'm sorry. Would you like some wine?

Can't swallow, muscles are too tight.

 How about in a syringe?

 Yes, thank you.

There were other issues that needed to be dealt with also and so I crawl out of my bed and tend to them. But I have to confess in a Martha sort of way. I was grumbling. Lack of sleep, fear of the ever present progression of this disease, living in my self serving flesh. I struggle to keep my eyes focused on God, to lean on Him, to serve Bob as unto the Lord. And then I hear the words.



I'm Scared

 

How do I comfort him? I'm scared too. What is he scared of?

What am I scared of?Are they the same things?

 How do we negotiate this  journey?

 

Fear

Worry

Paralysis

Ineffectiveness

Frozen

Anger

Frustration

Lost

 

These are the things we battle, these are our adversaries, our enemies,

the host that encamps against us.

 

And I whisper to God, in the middle of the night. "Help me Lord to serve you, to care for Bob as if I was doing it for you, Not in my own strength but through yours. To your Glory and not in a self absorbed inconvenienced state of mind. I love Bob, I love you, help me to be the very best Wife, Servant and Daughter of God I can be."

 

Its 10 am, the night has passed, things have calmed down, we got some rest but we are moving slowly. Having set Bob up with his breakfast I go downstairs to have a quite time with the Lord. I've been reading Chuck Swindoll's - "Living the Psalms Encouragement for the Daily Grind"

 

Today?

 Psalm 27 - The Grind of Fear

 

The Lord is my light and my salvation;

Whom shall I fear?

The Lord is the defense of my life;

Whom shall I dread?

When evildoers come upon me to devour my flesh,

My adversaries and my enemies, they stumbled and fell.

Though war rise against me,

In spite of this I shall be confident.

One thing I have asked from the Lord, that I shall seek:

That I may dwell in the house of the Lord

all the days of my life,

To behold the beauty of the Lord

And to meditate in His temple.

For in the day of trouble He will conceal me in His tabernacle;

In the secret place of His tent He will hide me;

He will lift me up on a rock.

And now my head will be lifted up above

     my enemies around me,

And I will offer in His tent sacrifices with shouts of joy;

I will sing, yes I will sing praises to the Lord.

Hear, O Lord when I cry with my voice,

And be gracious to me and answer me.

When you said "Seek My face," my heart said to You,

"Your face, O Lord, I shall seek."

Do not hide Your face from me.

Do not turn Your servant away in anger;

You have been my help;

Do not abandon me nor forsake me,

O God of my salvation!

For my father and my mother have forsaken me

But the Lord will take me up.

Teach me your way, O Lord,

And lead me in a level path

Because of my foes.

Do not deliver me over to the desire of my adversaries.

For false witnesses have risen against me.

And such as breathe out violence.

I would have despaired unless I had believed that I would

     see the goodness of the Lord

In the land of the living.

Wait for the Lord;

Be strong and let your heart take courage;

Yes wait for the Lord.

 

How good is my God?That he responds to my needs and cares. And so I read Swindoll's words of insights and I write the inspired thoughts that sooth my soul and draw me closer to Him. I cry, I pray, I am refreshed in my spirit and my resolve and the I open my Facebook to this

 

 

this was posted by a friend from the church I grew up in  -Valerie Higley

and I respond in the comments section

 

I've been reading Chuck Swindoll's book "Living the Psalms- Encouragement for the Daily Grind".

 Psalm 27 is the Psalm for the Grind of Fear. Worry is what we do when we are fearful, but if we  choose to follow David's example and we can face fear with Praise, Confidence, Remembering past Victories God has done in your life, Seeking His help and waiting on God. All the while singing a song of victory.

 Fear can paralyze us, but if we focus on these things we can break it's hold. The only way through is to rely on, to trust, to be secure, to have assurance in our relationship to a God who is not some distant Deity. An impersonal, abstract, theological Being. He is a very personal, ever present Friend and Helper. Our confidence and stability comes from this relationship because it is not our strength but the Lord's that sees us through. He is our only foundation and He is unshakable!

 

This was my morning quite time and a paraphrase of Chuck Swindoll's writing on Psalm 27 - Susan

 

A short brief exploration of the lessons He has been teaching me today, and in fact for awhile, the themes have been:

 

Keep your eyes on Jesus

Keep your focus on Him

Serve as unto Him (not to others)

Do all to the Glory of God

He is Personal

My confidence is in Him not me

He is my foundation (Unshakable)

 

So are we scared? Yes and we have reason to be. How do we face it?  With a faith and confidence in God. I choose faith over worry. Confidence in God over fear of this disease. And I remember early on He told me:

 

I've got this

Don't worry

 

"Every place that the sole of your foot will tread upon I have given to you..."

 

"Have I not commanded you?

 Be strong and of good courage;

Do not be afraid or dismayed;

For the Lord your God is with you

wherever your go." (Joshua 1: 3 & 9)

 

 

And I find comfort and strength with a God who walks with me through the wee early hours of the day when my strength wavers.

 

 

 

 

 

 

 

 







The Slope is getting slippery

Sorry for the gap, Bob has been having a tough 8weeks.

 Up until now Bob has been steadily but gently declining, each year I can see that he has needed more and more help but it hasn't been so dramatic or burdensome. One year he can get in and out of bed, then he needs help a couple of times and months later you realize that you are helping him every time and he seriously can not move around in bed without help. Bear in mind that I try not to offer assistance when he truly dosen't need it, I don't want to start him down any paths of dependance until it is truly needed.

But recently it seems that we are in that place where things seem to be accelerating. Since March we have had at least three serious events and I'm not sure when the next one is going occur. Or even what that will be, although I know of a few things that could go south really fast. So I am getting more help and getting Bob to start accepting care from others in even the more sensitive things. He is a very modest man but I just can't keep doing it all and it is getting more and more taxing. So the downword slide is getting steeper and we are rolling faster.

I will fight to keep Bob as healthy and happy as possible for as long as possible. I don't see an expiration date on him anywhere and I am not "giving in"  or "giving up". I will keep my roots solidly in God's word and my relationship to Him fresh

"It is of the Lord's mercies that

 we are not consumed, because His

compassions fail not.

 

They are new every morning: great

is thy faithfulness.

 

The Lord is my portion, saith my

soul; therefore will I hope in Him.

 

The Lord is good unto them that

wait for Him, to the soul that

seeketh Him." (Lam 3:22-25)

 

I believe that God has been preparing me since the begining of this journey. He has whispered in my heart, giving me an inkling of what is happening, comforted me by showing me encouraging scripture.

 

"Every place that the sole of your foot shall tread upon, that have I given to you..."

Joshua 1:3

 

 

Giving me strength and support, security so I can concentrate on Bob's needs and know that mine are being taken care of.

 

I am often asked how I can be so cheery, strong, positive. I'm not always, I am a human, boistrus, Irish redhead who can go from nice church lady to a sailor in a heartbeat. But that's the beauty of my relationship with God. He knows, He gave me all the character traits that make me both a wonderful caregiver for Bob and that crusty little sailor. My job is to allow Him to guide me and prepare me for His work, this life, Bob's care and forever after with him.

 

So here we are, the rock is picking up speed, we are keeping close to God and hoping for a really good long run. 



 

Wear Purple!

March is MSA Awareness Month!
The Ribbon color is Purple!

All across the US- MSA warriors are petitioning their states to, first, make a proclamation of March as MSA Awareness month and then to push it forward into a state law. Many have reached the proclamation stage, a few are already state law. I would give you a list but I haven't seen one, but I do know that one is currently being created and I will include it later.

The difference between proclamations and the laws is that the proclamations are only for that year while the law makes it permanent.

When Bob was first diagnosed with MSA I found very little info and support out in cyberland. I continued my association with the Parkinson's Resource Center here in town and still count the caregivers support group my mainstay support along with the wonderful people in my church.



Gradually through social media I have met and connected with others in the MSA community and watched it become more and more active and persistent in raising awareness of this rare disease.

What is MSA?

MSA is a rare neurological disease that affects about 15,000 people in the US. It is considered a degenerative disease that affects one's balance, bladder, bowls, blood pressure, speech, swallowing, sleep, breathing often accompanied by muscle rigidity and tremors. Most often patients are misdiagnosed as having Parkinson's disease. To find out more check out the press release posted on http://www.msaawareness.org/


How can you help?

• Wear a purple ribbon and when people ask what it's for tell them about MSA.
• Help us raise funds by purchasing the beautiful awareness products produced by several of the MSA warriors. Many of these people are the caregivers of folks with MSA and they are making beautiful- T-Shirts, hats and bracelets that help both make MSA visible and the funds go to help support research.

                    T-Shirts and hats              bjconnelly@netnet.net

                     MSA awareness bracelets  msaawarenessbracelets.weebly.com

• Pray for both a cure for MSA and for the provision of everything that people currently dealing with MSA need.
• Keep in contact with those you know that have MSA. They can often become very isolated and social interaction is an amazing lifter of spirits, both for the person with MSA and the caregiver. 
• Write to them - the caregiver can read the letters and cards to them, let them know they are not forgotten. and don't forget the caregivers.
• Treat the caregivers- the better spirits they are in the better care they can give.

Many people have asked how they can help me and have even offered to take over caring for Bob while I get away. I really appreciate the offers and sincerely think about how I can accept the offers. Getting away for a few hours is do able, but we are always mindful of the intensely personal care that can be required that involves extreme trust and can limit our ability to accept the offers. So if you offer and truly want to help don't be dismayed if it takes me awhile to figure it out. I do want the help, I just have to figure out how to arrange it.

Case in point. A man from my church offered to spell me for a bit and the end result is that he will be taking Bob to our men's retreat. The retreat is located at a conference grounds about 45 mins away. An overnight is not impossible but it would require a LOT of packing and I would have to attend. But I can get him ready and hand him off to the men of this church who can bring him home Friday night and pick him up again Saturday morning. I am confidant of his care because Jim is familiar enough with Bob and several of the men attending are paramedics, nurses, doctors and emergency responders. He couldn't be in a better place and I can be relaxed while he is away. Also we have product that we can use during the day that can alleviate the need for "embarrassing" moments.

I am excited to hand him off to the men of Crossover Church, both for Bob and for the others. There is as much joy in ministering to others as there is in receiving the ministries. Both will benefit greatly and who knows how God will work in this outing.

I know I started this blog entry as a way to promote MSA Awareness month, but it seems to have morphed into a Bob Awareness tutorial. Funding for research, finding therapies that help those who have the MSA now and looking forward for a cure for the future is very very important, just as important is caring for those who suffer with it now. So I guess this post is  truly all about raising awareness of MSA to find a cure and to minister to those who suffer.

So don't forget to wear purple for MSA and Bob Awareness month!!!!

One of my favorite pictures of Captian Bob taken shortly before MSA entered our lives

Life, Monster Trucks and MSA Awareness

Sorry I haven't posted in a while, ever since Bob's surgery in August, I have just felt a little out of step. Whenever you go through something as traumatic as his gall bladder surgery was it's kind of like a tuning fork - once you hit it it takes a really really long time to stop quivering and towards the end it's so subtle that most won't even see that it's still vibrating.
Somehow though I feel like I am beginning to get back to some sort of normal or back to a healthier place.

One way to tell that we are getting back on track is when we get moving and do something "different". It's usually something relatively spontaneous, a little wacky, lots of fun and usually has very little cost involved. This tendency of ours has led us to some very interesting places and kind of our signature approach to life. The last few years we have been a bit limited because spontaneity is a little difficult with the logistics of a chronic illness.

We have an early morning news show called "Good Morning Northwest" that I like to have on in the background of my waking up ritual on an occasional morning. On Fridays they have one of their anchors at a "secret" soon to be revealed location and they have some sort of give away. Two weeks ago it was just a few blocks away at a local car dealership and they were giving away tickets to the "Monster Truck Jam". So I screwed up my courage, banished my relunctance to get dressed and go out into the dark cold of an early snowy morning, and drove to the spot and got two free tickets to the event.The one compelling reason that I used to convince myself to go was that I really like the anchor that does these "For Free Friday" things and March is coming.

March is MSA Awareness month (Everyone wear purple!) and many of the MSA sites that I frequent have been making a coordinated effort to get the word out. As a result we can download a professional press release and packet that has all the info you need to pass on to your local media and lawmakers to promote MSA Awareness. so I booted up the computer, printed a copy and off I went.

So now I have done my civic duty and scored some tickets.

And on sunday we went to "MONSTER TRUCK JAM"!





We had a great time! Back when Bob was a teenager he was very involved in racing, and we have always enjoyed going to the occasional sprint car race, watching Formula 1 on TV, and Bob loves to watch the tractor shows on the Rural TV channel. So at the begining of the show they are all reving their motors and the whole place is just vibrating with sound and he starts to cry. I was a littled worried it was because his ears might be too sensitive (he did have ear protection) but he said he was just filled up with memories and yes he was enjoying it.

Often times Bob has difficulty with facial expressions and to those that don't know him he can look like he has a mask on, but on that day there were some very definite expressions of joy that crossed his face and it was a very precious thing to see. What a wonderful day, a simple thing that became a very bright memory.

We need these bright momments, because sometimes our reality can really suck. Lately we have had some health challenges and last week our MSA community lost a very dear man to this awful disease. Bob and I will be traveling to Everett with Kym Crowe (who lost her mom in Nov) so that she and I can attend the services. Kym makes these amazing MSA Awareness bracelets to help raise funds for research.

MSA Awareness Bracelets made by Kym

 

 

 

I know Kym is still in the throes of greiving her mom and I too have been impacted by his passing.  Keith was a believer and I am so glad that he is at rest and in God's care. Pam however is now faced with his loss and we go to wrap our arms around each other to offer comfort, understanding and love.

 

Pray for us on our journey and remember that:

 March is MSA Awarenes month and wear purple for Connie, Keith and Bob.