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Sunday, November 08, 2009

Sun, 08 Nov 2009 03:52:54 GMT

Just thought i'd share...that the sounds of Christmas are in our house today!

Stephanie was helping me hang a few left over things from the move three months ago, that never made it to the walls, and while she was hammering for me she was hammering to the tune of "God Rest Ye Merry Gentlemen" and now everyone is either singing or humming that tune!!!

Just thought i'd share how happy things are sounding around here!!!

Saturday, November 07, 2009

Sat, 07 Nov 2009 03:40:05 GMT

Update: Talked to Marks PCP tonight and she seems as confused as we are to the whole change in diagnosis...getting me a referral for a second opinion as we go through this yucky mess trying to figure out what is really going on and what it is we are to be learning from our Lord and Savior....I know there is so much I (we) have learned on this journey, but I also know that there is so much more that I can learn, and probably NEED to learn....this hurts sometimes, but I love God and hold on to Him tightly rejoicing each day as I know His mercies are new every morning!

This post is going all over the place, as my brain feels like scrambled eggs now more so then ever...so good luck figuring out what I am trying to say here...

Ok, so Mark has been diagnosed with many things in the past several months...what is the right thing...I haven't a clue any more!?!

As you many of you know Mark has been diagnosed with everything from prescription drug overdose, to a bad drug interaction, to a stroke, to an Anoxic Brain Injury and now they say that is completely wrong and that it looks like he has Wilson's Disease, and the Neurologist thinks it was caused by Mark taking Promethazine back in April, (Promethazine is sometimes called Phenergan)

*(there is some info below from the web on side effects to look for when using Promethazine....in case anyone is interested, and these side effects make sense as to what Mark went through, and is going through, and Pastor Al, I bet you can attest to this since besides the girls and I, you were with us at the hospital that first night these symptoms began)*....

Promethazine is a drug that many of us may have taken at one time or another...and the doc says it can take one dose of that stuff to cause this disease.

I'm not certain if I understand what Wilson's Disease is, but will be researching it and speaking to Marks primary doctors as well as his other docs.

Mark still has the pain from being diagnosed with RSD...I don't know if knowing that one being fact is a relief or not...UGH!

Plus the neurologist is not a very patient or nice guy...and wouldn't listen to what we felt was important for him to know so I went ballistic on him(really I did and it wasn't pretty or God glorifying at all!)....I did later apologize, but my heart is still dealing with anger towards him, so I would appreciate prayer for me on that.

Also thinking about a second opinion for a neurologist, so if anyone here in Tucson has any thoughts on that let us know please.

Oh Lord I am so confused and beg for your return!!!!

Thanks, we love all of you more then we can say!!!

Kel

*Important information about Promethazine

Stop using Promethazine and call your doctor at once if you have twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs. These could be early signs of dangerous side effects.

Sunday, October 18, 2009

Sun, 18 Oct 2009 18:18:02 GMT

I want to be like my Jesus!!!

My Jesus

Todd Agnew

Which Jesus do you follow?
Which Jesus do you serve?
If Ephesians says to imitate Christ
Then why do you look so much like the world?

Cause my Jesus bled and died
He spent His time with thieves and liars
He loved the poor and accosted the arrogant
So which one do you want to be?

Blessed are the poor in spirit
Or do we pray to be blessed with the wealth of this land
Blessed are they that hunger and thirst for righteousness
Or do we ache for another taste of this world of shifting sand

Cause my Jesus bled and died for my sins
He spent His time with thieves and sluts and liars
He loved the poor and accosted the rich
So which one do you want to be?

Who is this that you follow
This picture of the American dream
If Jesus was here would you walk right by on the other side or fall down and worship at His holy feet

Pretty blue eyes and curly brown hair and a clear complexion
Is how you see Him as He dies for Your sins
But the Word says He was battered and scarred
Or did you miss that part
Sometimes I doubt we'd recognize Him

Cause my Jesus bled and died
He spent His time with thieves and the least of these
He loved the poor and accosted the comfortable
So which one do you want to be?

Cause my Jesus would never be accepted in my church
The blood and dirt on His feet might stain the carpet
But He reaches for the hurting and despises the proud
I think He'd prefer Beale St. to the stained glass crowd
And I know that He can hear me if I cry out loud

I want to be like my Jesus!
I want to be like my Jesus!
I want to be like my Jesus!
I want to be like my Jesus!

Not a posterchild for American prosperity, but like my Jesus
You see I'm tired of living for success and popularity
I want to be like my Jesus but I'm not sure what that means to be like You Jesus
Cause You said to live like You, love like You but then You died for me
Can I be like You Jesus?
I want to be like you Jesus!
I want to be like my Jesus!

Friday, October 16, 2009

Fri, 16 Oct 2009 01:33:15 GMT

Ok just a quick update...

Marks neurostimulator procedure has been moved back to noon tomorrow instead of 1:00 which was good to hear with all the let downs we have experienced through all of this.

We also found out tonight that the neurostimulator will be put in and then taken out probably next Wednesday...if it worked well for him they will then put in for the prior authorization to the insurance to have it permanently implanted in approximately 3 weeks...so if it works he will be completely pain free or at the very least in less pain (we were told of a police officer that dealt with 17 years of severe chronic pain like Mark has and had the neurostimulator put in and he is 100% w/out pain and has been the whole time he has had the thing in, so that is very encouraging!) anyway he will have little to no pain (we will be thankful for even a little pain relief, but we are praying for complete relief) for a week then back in pain for up to 3 weeks if our insurance approves it then he will go back to have it put in permanently.

I let you all know this so that I can ask for specific prayer that this does work for Mark and that the prior authorization goes through with out any glitches.

Thank you all so much for continuing to hold us in prayer!

Because of Christ!
Kelly

Friday, October 16, 2009

Fri, 16 Oct 2009 01:29:30 GMT

It has been a rough couple of weeks...emotionally for Mark especially.

I am learning to deal with the ups and downs of all that comes with a person with a brain injury...there is so much to learn! I really need to hone my patience skills and sometimes that can be difficult. My eyes are on my Lord and Savior and that is the ONLY thing that keeps me hanging on. I am also learning how to deal with the many side effects that come with living and loving someone with a brain injury, through his therapy (his speech therapist has been great in helping us through all the ups and downs of his brain injury) and through the brain injury association. Mark is also tentatively scheduled to see a neuropsychologist in December as they know how to deal with so much in the area of brain injuries...we are just waiting on the insurance to authorize it.

I have a long way to go in how I handle all the things that come with this type of injury...but then again I think it is so much more difficult for Mark on so many levels. He says he does not feel like a person...and it is so difficult for him to talk clearly, and sometimes he has so much trouble speaking that he just goes "uh, uh, uh, over and over again until he gives up completely frustrated.

I pray for him all the time and lay in bed at night just staring at him while he sleeps, because that is the time he is most calm and it is good to see him so relaxed and calm!

One of the reasons it has been a rough couple of weeks is that two days before Mark was supposed to go in to have the neurostimulator put in, the doctors office called saying they had to reschedule because the doctor had an emergency and had to fly out. While that is understandable it did not lesson the feelings of frustration on Marks part especially...I have been doing all I can to encourage him and help to count down the days until the day it was rescheduled for which is this Friday...and now we are about two days away for him to be living life pain free or at the very least with less pain...and we can begin weaning him off of all the meds he is on for pain. I believe that as soon as we get Mark off of the pain meds that he might begin to see progress better in therapy...right now it is one step forward and two steps back when it comes to therapy because the meds cause him so much forgetfulness, and fogginess so it is hard for therapy to accomplish what it is supposed to.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On another note earlier today, I was directed to this post and I wanted to share it with you all. I pray you all are as encouraged to love your neighbors as much as I was as a result of the story in the post.

Galatians 5:14

For all the law is fulfilled in one word, even in this: “You shall love your neighbor as yourself.”

Have a blessed weekend!

Sunday, October 04, 2009

Sun, 04 Oct 2009 22:27:14 GMT

Neurostimulator round ~~two,~~ ~~three~~ or is it four now?

I spoke to our health insurance case manager this week about getting through the hurdles to get the neurostimulator approved and finally aim to get Mark off of some, if not all of the meds he is on. It seems that this case manager is one person doing the job of ten and told me she had NO RECORD WHATSOEVER of a prior authorization for the procedure even being submitted (which should have been done 2-3 weeks ago) and she asked me if I could make some phone calls requesting certain information from doctors and from Boston Scientific (who is the company that makes the neurostimulator) and do some leg work for her to help things along?

I said YES without a doubt I will do whatever is needed to help my husband!

So that day the first thing I did was to began praying SPECIFICALLY (and asking others to do the same) for us to get through another hurdle in regards to the neurostimulator.

The next day I called Nita who is the nurse at Dr. Chase's office (he is the chronic pain doc) and left her a message asking what was going on with it, and as of yesterday she had not returned my call . I also called Boston Scientific to see if they could shed some light on the prior authorization status...they had no record of Mark even in their system...

So this morning I took Mark to the neurologist (who is in the same building as Dr. Chase) to follow up on the results for the EEG he had last week and afterwards I was going to find Nita after that appointment and talk to her about it...during our appointment w/ the neurologist Nita came looking for us to tell me she was very confused by my message because she had the approval letter right there and she is trying to get Mark scheduled for next Friday afternoon!

Once again I am in awe of God and how amazing He is...faith can be difficult to muster in tough times, but let me tell you it is important that we have that faith and trust God no matter what and keep on trusting and obeying even when you do not understand!

As to the EEG, it looked promising as no seizures were shown, Praise God, however his brain waves were abnormal which could be a result of the brain injury itself or the meds he is on, or sadly she said it could be the result of past alcohol and drug abuse, and admittedly being a dumb kid/young adult he did do drugs and drank alcohol...I did too, and I can attest to the attitude when one has (or can have) when they are young and dumb...you never think about the side affects you may endure later on in life from those dumb choices, and think just because you seem fine at the moment you are doing drugs (or drinking) and you think that they are not affecting you, it does not mean you will not suffer consequences later on in life! Just a warning to anyone who may stumble on this blog who is making those kind of choices, no matter how old you are...it is not worth it!

We want to thank you all for your faithful and continued prayers for us these past months and ask you to please continue as Mark and I are trying not to worry about this being pulled out from under our feet again at the last minute, also please pray that the neurostimulator is the answer to at least some pain relief for Mark and if it is it will be requested of the insurance by Dr. Chase to implant it permanently (he will know the day it is implanted temporarily if it does work, but they do a 2 week trial run before they permanently implant it) so please pray for the prior authorization for the permanent implant of the stimulator will go through w/out any problems.

I wanted to share the following e-mail I received from my friend Angela this morning:

Author: Elisabeth Elliot
Source: Keep A Quiet Heart
Moonless Trust
Some of you are perhaps feeling that you are voyaging just now on a moonless sea. Uncertainty surrounds you. There seem to be no signs to follow. Perhaps you feel about to be engulfed by loneliness. There is no one to whom you can speak of your need.
Amy Carmichael wrote of such a feeling when, as a missionary of twenty-six, she had to leave Japan because of poor health, then travel to China for recuperation, but then realized God was telling her to go to Ceylon. (All this preceded her going to India, where she stayed for fifty-three years.) I have on my desk her original handwritten letter of August 25, 1894, as she was en route to Colombo. "All along, let us remember, we are not asked to understand, but simply to obey.... On July 28, Saturday, I sailed. We had to come on board on Friday night, and just as the tender (a small boat) where were the dear friends who had come to say goodbye was moving off, and the chill of loneliness shivered through me, like a warm love-clasp came the long-loved lines--'And only Heaven is better than to walk with Christ at midnight, over moonless seas.' I couldn't feel frightened then. Praise Him for the moonless seas--all the better the opportunity for proving Him to be indeed the El Shaddai, 'the God who is Enough."'
Let me add my own word of witness to hers and to that of the tens of thousands who have learned that He is indeed Enough. He is not all we would ask for (if we were honest), but it is precisely when we do not have what we would ask for, and only then, that we can clearly perceive His all-sufficiency. It is when the sea is moonless that the Lord has become my Light.

so with that said all praise goes to El Shaddai - THE GOD WHO IS ENOUGH!!!

When you have nothing left but God, then for the first time you become aware that God is enough.

-- Maude Royden

Wednesday, September 23, 2009

Wed, 23 Sep 2009 18:59:30 GMT

The post linked below is one that I appreciated greatly...mostly because in the past year or so, I have been asked by many people when I was going to go to work because we have been struggling financially. Funny thing is while we have been struggling financially we have never been without! Yeah things have been tight and sacrifices have had to be made, but we have never once gone without anything we needed, God has been with us taking care of us every step of the way.

Anyhow to those people that think I should have gone to work, I have to tell them that I do work, I just do not get paid for it. I believe God will honor that and I know He will and He has done considering that all of our needs have been met, and I have learned to balance out my wants from our needs....that has been a good lesson learned.

Along with everyday life tasks, (i.e. paying bills, balancing the checkbook, making sure there is gas in the car, and making sure the oil gets changed on time and a bit more of the yard work then I used to do,<<<these are all things that Mark used to do regularly before his brain injury rendered him unable to keep up with this stuff as before...I am also Marks full time care-giver, helping him get dressed, help him with showers, make sure he gets his meds on time (4 to 6 times a day) one dose is at 4:00 a.m. each day then every eight hours plus every 4 hours as needed for his breakthrough pain...it is all been part of a pain managment plan the docs have him on until he can get the neuro stimulator in hopes of getting him almost to completly pain free and not dependent on narcotics any longer), also making sure his prescriptions a filled on time so that he does not run out, managing his many appointments which I need to balance with my kids appointments and my appointments and their free time *which is slim to none these days*, but it requires me to get them to and from places in a way that is somewhat organized, thankfully God has given me wonderful friends that stand in the gap on that area and help me out tremendously! And of course, like every mom I am my childrens' full time care-giver as well, which involves keeping them on task spiritually (Mark tries to do this, but he has so much to work on with himself that it is difficult for him at this time), as well as with their schoolwork, discipline and daily life skills (also teaching Steph how drive *yikes*, which in reality this is not so bad since for the past few months Mark has been unable to drive therefore Steph has been a great help in that area, when I am just done driving anywhere she can take the wheel and let me be passenger...plus it has taught her how to drive and do well rather quickly since she has had to learn on the fly so to speak...there has been little to no parking lot practice with her...it has been cold turkey on the road) and trying to take care of myself, spiritually, emotionally and physically as much as I can.

I try to help the girls with their schooling as much as time allows, thankfully however our girls have been able to do so much independently and while I know that this is a season we are going through it will one day end, and I can focus on them better...just the same our girls have been a great help in so many areas, such as doing as much school as they can on their own and helping to keep things running smoothly at home, they are growing up to be fine young ladies, and I appreciate them so very much! Just the same though I need to follow up with them to see that they are on task spiritually, as well as with school work, but with all the doctors appointments and therapy appointments that Mark has they do end up doing so much on their own,

I am in no way complaining about my role nor am I condemning any woman who works in or out of the home by posting this link, I just wanted to post it because it was an encouragement to me.

Beware of Home Businesses! | georgene on Xanga

Friday, September 18, 2009

Fri, 18 Sep 2009 01:22:06 GMT

A good friend of ours once said that if you do not learn what it is God wants you to learn the first time then you will be sent to the back of the line for a chance to hopefully learn it the next time.

Well it seems with everything going on in our lives that we have something to learn and keep getting sent to the back of the line, because we are not getting it...whatever 'it' is.

I wonder if it is patience?

We were so close to Mark getting some pain relief without medication only to find out today that the insurance has not authorized the neurostimulator implant...so Mark will not be going in tomorrow as we had planned or hoped for, but we hope and pray that he can get approved and go in soon upon the insurance company approval.

Please pray for us that we are anxious for nothing as we wait on the Lord and learn what it is we are to learn...this has been such a difficult and emotionally painful road these past 6 years....we get so close then we start over.

_____________________________________________________________________

This was sent to me by my good friend, Angela (oops just found out that Angelas husband Al, sent this to us....he is our good friend too) this morning after we got home from one doctor appoinment today...in hopes that it would inspire us...I love when God puts things like this on peoples hearts...it was (and is) a very timely piece of encouragement!

DON’T QUIT

When things go wrong, as they sometimes will,
When the road you’re trudging seems all up hill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressuring you down a bit,
Rest, if you must—but don’t you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about
When he might have won had he stuck it out;
Don’t give up, though the pace seems slow--
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man.
Often the struggler has given up
When he might have captured the victor’s cup.
And he learned too late, when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out—
The silver tint of the clouds of doubt.
And you can never tell how close you are;
It may be near when it seems afar;
So stick to the fight when you’re hardest hit—
It’s when things seem worst that you mustn’t quit.

Now we are off to the second of Marks three appoinments today...life these days are busy, busy, busy with appoinments.

Thursday, September 10, 2009

Thu, 10 Sep 2009 20:28:56 GMT

Next Friday September 18 at 1:30 in the afternoon, Mark will be going in to THE CENTER FOR NEUROSCIENCES to have the Neurostimulator put in for a trial of one - two weeks.

If the Neurostimulator works it will be put in permanently for pain relief instead of the pain drugs he has been on and having increased over the past 6 years, two of which played a huge part in his brain injury this past May, so needless to say this is a HUGE step for him (and us)!

We would appreciate your continued prayers that this will be the answer for at the very least a big part of his pain relief!

What Is a Neurostimulator?

A neurostimulator is a surgically placed device about the size of a stopwatch. It delivers mild electrical signals to the epidural space near your spine through one or more leads (special medical wires). The electrical signals cause a tingling sensation in the area of your back and leg pain.

How It Works

Neurostimulation provides pain relief by modifying (modulating) the pain messages before they reach the brain. Think of it like rubbing your "funny bone" after you've bumped it – the rubbing masks the feeling of pain. Similarly, the tingling produced by the neurostimulation system masks the feeling in your area of pain.

You can adjust the strength and location of stimulation using a handheld programmer. For example, you can regulate different levels of stimulation at different times of the day or for various activities – such as walking, sleeping, or sitting.

About the Neurostimulation System

A complete neurostimulation system consists of five parts:

Neurostimulator – The device that generates the electrical impulses (usually placed under the skin in your abdomen)
Leads – Special medical wires that deliver neurostimulation to the epidural space near the spine
Extension – The cable under the skin that connects the lead(s) to the neurostimulator (optional on some systems)
Physician’s programmer – A computer at your doctor’s office that lets your doctor adjust the neurostimulation system and set stimulation parameters
Patient’s programmer – A handheld device you can use at home to customize the stimulation (within the settings your doctor has selected)

The neurostimulation system does not make any noise. It may be felt as a small bump under your skin, but does not normally show through your clothes.

Sunday, September 06, 2009

Sun, 06 Sep 2009 21:24:28 GMT

White House to fly Red Chinese flag People's Republic ¦ | suzsea on Xanga