"Letter to patients with chronic disease" MUST READ!

I read this after it was posted on one of the MSA facebook pages I subscribe to and I thought it was worthy enough to pass along to all of you.

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

I found a lot of good insight that might help me deal with any and all new professionals that I come into contact as Bob's disease progresses and perhaps it ill help those contacts be more successful.

Susan

Not your ordinary Hospital Bed

As things progress in this disease I endeavor to be proactive and prepare for things ahead of time. Bob's walking is getting more and more unreliable and we have added the option -"Do you want to walk or ride" as to how he gets from bed to chair these days.

So I have started making room for a wheelchair. Last summer after his gall bladder surgery and the resulting problems with middle of the night aspiration we obtained a hospital bed. Not wanting to move into another room - and we only have a one bedroom apartment- I placed a twin bed next to it. Unfortunately there was very little if any room left to maneuver.

My solution? I found out that there could be room to put a trundle bed under the hospital bed. So I worked out a floor plan. I had to consider several things. first of all is the position that he tends to sleep in, he would want to be facing me so he could see me (and for spooning potential). Then there is the placement of the TV and if he could see it. The problem here is that he has very limited movement so we have to work with in his parameters, and then there is the space available along each wall and how all the other furniture fits.

The last piece of the puzzle is how we want our bedroom to feel. We don't want it to be a "Sick room" or "Hospital room" we want OUR bedroom, our sanctuary, our lazy day hangout place. Bob wants to keep as much of the bedroom furniture, that we purchased 32 years ago, as possible.

So here is my solution,

 We placed our original headboard up against the wall and then pushed the Hospital bed sideways up against it - kind of looks like a day bed

 Still have our hutch (with knicknacks and photos) next to the bed is the "Bob station" and we have plenty of space for any kind of wheelchair to come into the room

 The trundle bed revealed. The hospital bed has up to 15 inches of clearance. Trundle bed frames are 4" to 6" and mattresses can be 4" to 8"

 Trundle bed pulled out

 And popped up into place

 Sleeping together side by side for 34 years. The trundle bed can also be moved out of the way to allow access if I need it during the night. If he gets to moving around too much with the tremors I can protect him with the bedrails and I can get some sleep without being shaken all night.

 The Bob station is placed at the head of the bed and has all the things I need for the morning and evening routines - keeps me from running around collecting everything and a surface to work on

 Lotions, potions, powder and towels, paper, tissue and wipes. Timers, gloves, lots of love, Gregorian chants at night. Blood pressure cuff, stehescope, Scissors, toothbrushes and cups everything we need for the night.

 Bulky items are under the table - Now you see them

Now you don't

 

We now have a bedroom that is now wheelchair friendly, has all the amenities I need for his care and our comfort, is still our sanctuary and I actually gained some storage spots I didn't have before.

One more thing :

Marlin our 19yr old cat was quite distressed that his "Spot" had disappeared. For those of you who follow "The Big Bang Theroy" show, he was very Sheldon Cooper about it. After a week I think he has finally found his "Spot" and now the arrangement is officially Marlin approved and we can all heave a sigh of relief.

My Veteran- Happy Memorial Day

USS Elliot - Bob's Ship
 

Today we will be going to a church friend's house for a picnic - maybe

They will see him freshly bathed, a haircut and beard trimmed, polo shirt, crisp board shorts and boat shoes.

They will also see the bright red scooter with his pirate flag, the stooped posture, masked face and barely there voice.

 

I see a young man on the bow of a destroyer in full dress uniform with a grin as wide as the oceans as he gazes down at his bride on the dock.

I see him at the helm of his sailboat screaming across the Bay

Thank you to all the veterans that have made our lives possible.
Have a happy Memorial Day

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.