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Monthly Archives: March 2010

Update 3/23/10

Well, today I had a great workout in physical therapy!  We worked for 45 minutes instead of 30 and I ended with icing my back and neck!!!  Great progress is being made!  I am waddling less and less each day!  Yesterday I walked to a neighbor’s house while the kids rode their bicycles around me in circles to slow their progress to my speed, but I made it!  It was quite the accomplishment.  Praising the Lord for that!!

Medically, I have been coming down on the prednisone.  Two weeks ago I switched from 40mg/day to 30mg/day.  This is a hard process and it was very painful.  I have found that mornings are very difficult, but by mid afternoon, I am able to get around a lot better.  It took me probably a week and a half to get used to this new dose and within the last couple of days, I have been doing better, but still struggling each morning.  Tomorrow I will go down again on my dosing.  I am going to 20mg/day.  I am a bit nervous about the change, knowing that it is going to be difficult, but I will make it through it!!  As Dr. Carter told me last week, “Courtenay, you are what we call here a Steele Magnolia!”  LOL!!  I am assuming that is a compliment.  I am tough and I will make it!  God has given me great strength and motivation to heal and get better and to put up with a lot of pain.  So again, I give Him all the glory for my ability to have a high pain tolerance and the almost stubbornness to fight this disease and get better!!  I have another appointment with the great Dr. Gilkeson next Wed. and we will be re checking my cpk levels, so hopefully they will still be fine and in normal range on the new level of prednisone.  I have been able to take the heart monitor off.  I have not gotten a report or seen the cardiologist about the results yet.  I have an appointment April 8 with her to discuss the results.

Also tomorrow, Jacob and the kids will fly back to Costa Rica.  We are praying that I will only be about 6 weeks or so behind them!!  Jacob will be focusing on homeschooling the kids, finding our future home (we are praying that God would go ahead and reveal to us a place we can stay in long term because we are ready to settle down.  We have moved so much in the last couple of years and we are ready to find “the place” for us in Costa Rica), and the Bible studies that he began before he came to SC up in Cipreses. 

Ways that you can pray specifically,

1.  That the Lord would give me the endurance to face the pain associated with coming down on the prednisone and the healing/rebuilding of my muscles in physical therapy. 

2.  That He would grant me grace in the mornings as this is the hardest part of my days.

3.  For Jacob and the kids.  Their safety.  Jacob having to do my job and his.  Small things like grocery shopping and cooking for me are easy and enjoyable, are harder for him.  Us all missing each other.

4.  Our future house.  That the Lord would give us a place with fresh flowing air (this is crucial because of the interstitial lung disease).  On a property that can be used long term with teams and our future ministry so that we can finally settle down after moving 4 times in the last 2 years.

5.  That we would continue to shine God’s light where ever He places us.  Here in Charleston and in Costa Rica we are His rays of light that need to share hope and grace with the people around us 🙂

6.  My heart really goes out to other people that have polymyositis or dermatomyositis.  Before me having this disease, I had not heard of it and now that I know about it and am facing this battle myself, I am asking you to pray not only for me, but for the others that are out there battling this battle.  One in particular is Aidan McKenzie.  He has been in this battle for 17 years.  Please pray for those facing this besides me.

7.  That God would use this disease in me for His glory!!

Thank you all.  I will continue to keep you all posted!!  We need and appreciate all of your prayers!!

This is one of my favorite songs!!  We sang this song at our commissioning service!!  This is our desire!  Enjoy!  “This is my Desire”  by Jeremy Camp

http://www.youtube.com/watch?v=04wLNGk8xxg

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Posted by on March 23, 2010 in Uncategorized

 

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Update 3/10/10

Ok.  So yesterday I had my first session of physical therapy.  Dr. Gilkeson had ordered stretching and massage.  And let me tell you, I thought I was going to especially love the massage and was looking forward to the appointment.  However, it actually turned out to be a difficult appointment.  First of all, it pointed out to me how much my muscles have been affected and how far God is going to have to bring me in order to get me back to where I hope my recovery will be.  Also, we tried to do a little massage.  I never thought that I would say this, but I did not like the massage and do not want to have that in the future!!!  After that appointment I decided that I was going to stay focused on God and His timing and His power to heal my body.  I was not going to worry about tomorrow and what it brings (or in this case does not bring) and I was going to let it worry about itself.  But honestly, it was a hard day.

Today we knew was going to be a big day.  We had kind of stalled in bringing my cpk down with the past three weeks and today, we knew we were going to have blood work done this morning and then have my doctor’s appointment with Dr. Gilkeson to see if we were going to have to add more medication to get my cpk coming down again.  The new medication we were discussing was one that would have to be injected, so I really was not wanting to add this new medication and we were going to discuss our timeline again as far as me returning to Costa Rica.  I had told Jacob that I was going to consider it a miracle if I actually did not have to add the new medication.  Well, we went in and when Dr. Gilkeson looked at his computer, he turned it to me and said, your cpk is in normal range!!!!!  I could not believe it!!!  Normal is anything below 190 and mine was 186!!!  I was in shock!  Jacob and I sat there and could not believe it!!  We had prepared ourselves to face hearing the worst and we instead heard way better news than we could have ever imagine!!  🙂

So what does that mean?  Well, first of all, I am going to be able to come down again on the prednisone some more.  We will be stepping down 10mg every 2 weeks.  It also means that I do not have to add another medicine.  The prednisone is helping the immune system suppressant that I am taking bring down and keep down my cpk, so no new medicine and slowly come off of the prednisone.  I will probably be on the immune suppressant for the next 2 years or so depending on how I do.  Dr. Gilkeson says that I may have flair ups in the future, but I should not get into this state again!!!  Praise the Lord!!  Also as far as the physical therapy goes, not only now can I do stretches, but I already have permission from Dr. Gilkeson to start working on getting stronger already!!  That is so exciting to me!  I go back to physical therapy tomorrow!!!  So we will start then!  Dr. Gilkeson says that I may continue to still feel sore and pain, but that should be getting better soon!!

What about returning to Costa Rica?  Well, Jacob and this kids’ flights are scheduled for March 24th.  We have been praying about it and with the news today, Jacob and I are in agreement that they should go ahead and return to Costa Rica.  Dr. Gilkeson wants to get my medication fully under control which, should everything continue the way that he thinks, I should be able to return by the beginning of May.  That would have us separated about the same amount of time as we were before.  In God’s providence I was reading last night about Nate Saint.  In the part that I was reading he and his wife were separated for months at a time and at one point she had their baby daughter!!  Us being separated for a little bit of time puts us in the company of some pretty impressive people.  Not to mention all of our troops that go serve our country.  They are separated for the benefit of us all from their family and they survive.  We will be separated for a much shorter amount of time for the long-term benefit of my health and for the people of the Irazu Volcano!!  I am praising the Lord for such a wonderful day.  For Him supplying the results that I needed to help us make some big decisions and for Him to be giving me the grace that I need constantly to face this disease.  All I can say is that He is so good, all the time!!!  He wove me together in my mother’s womb and He knows exactly how this disease is working in my body and exactly how and when to fix it for His glory!!  And today was all about His glory because He worked out what I consider a miracle today!!  And I honestly am still in shock and awe of Him!!  Again, “To God be the glory for the things He has done!”  “Shout to the Lord all the earth let us sing!!  Power and majesty praise to the King!”

Please continue to pray for us and my continued healing and I will continue to keep you up to date!

Court

 
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Posted by on March 10, 2010 in Uncategorized

 

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Update 3/2/2010

Today we have lots to be thankful for.  God is so good and faithful and is continuing to guide us and little by little bring healing to my body.  My mom and dad gave me a bookmark with a verse on it that sums up my heart right now –

“A joyful heart is good medicine.” Proverbs 17:22” 
 
And I have many things right now that are making my heart joyful.  First of all, Jacob and the kids arrived safely and we are all so happy to be together.  When they arrived, Sophia and Benjamin had to go to the pediatrician here because Sophia had a rash and Benja had an ear infection, but they are now doing great.  Jacob is continuing to have to do homeschooling for the three of them, but we have been able to add going to the county park for them to ride bikes as PE and of course Benja is playing golf!!  We also all went to the aquarium on Saturday with Jacob’s parents – little added science lesson!  I was able to make it with the help of my wheelchair.  So everyone is settling into a routine here at my parents’ house.  🙂
 
As far as my health progress goes….we are still working on getting my cpk and aldolase down into normal range.  We have made progress, but I am still not where I need to be, so I am still having discomfort.  I am able to walk now though, all be it slowly, and if it is going to be a large amount of walking, like when we went to the aquarium, I have to use a wheelchair.  I have been able to get to our target amount of the immune suppressant and I have begun to successfully come down some on my dose of prednisone.    I will meet again with Dr. Gilkeson next Wed 3.10.10 to decide if we are going to need to add another medication.  I am still wearing the heart monitor and do not have any news to report on that.  I am praying everyday that I will get a phone call from my cardiologist and that she will tell me that I can take it off and we can know what the issues are with my heart, but so far, I am still waiting.  Today, I had to go to GYN for an extensive check to make sure that ovarian or breast cancer is not what triggered the gene in my body that caused this disease to come to life in my body.  We may not ever know the environmental trigger that caused it, but we need to make sure that it was not one of these types of cancers.  And in women with this, these types of cancers are common triggers.  Tomorrow, Wed. 3.3.10, I will have a mammogram and then on the 16th I will have ultrasound of my ovaries and then on that same day I will meet back with my new GYN here and discuss if we need to do any more checking or testing.  Next week on 3.9.10 I will go to physical therapy for the first time for stretching and massage.  I will not be able to work on regaining any strength until we get all of this under control, but we are hoping this will help me be more comfortable and in less pain. 
 
Specific ways to pray
1.  That my cpk and aldolase would come back into normal range.
2.  That my cardiologist would get to see what she needs to see from this heart monitor so that we can make decisions regarding my heart health.
3.  That all cancer tests would come back negative, but if there is something there that we need to be aware of, that God would reveal it in the testing that we are doing so that it can be addressed.
4.  That physical therapy would bring me some relief and that I would continue to heal and get stronger day by day.
5.  That everywhere we go we would continue to share God’s light, love, grace and shine for Him. 
 
I know that God is using this time here in Charleston for His glory.  I have seen Him make changes in me and I feel closer to Him now than I have ever been.  I have watched Him work and move in situations where only He could be responsible for the things that are going on around us.  I can only be thankful for this situation and pray that I would bring Him glory through each stage of this.  I thank you all for your prayers and encouragement.  They are so special to us and make all the difference.  We need them and ask that you continue to pray for us.  
 
To God Be the GloryText: Fanny J. Crosby (1820-1915)

To God be the glory, great things He hathdone;
So loved He the world that He gave us His Son,
Who yielded His life, an atonement for sin,
And opened the lifegate, that all may go in.

O perfect redemption, the purchase of blood,
To every believer, the promise of God;
The vilest offender who truly believes,
That moment from Jesus a pardon receives.

Great things He hath taught us, great things He hath done,
And great our rejoicing through Jesus the Son;
But purer, and higher, and greater will be
Our wonder, our transport, when Jesus we see!

Refrain:
Praise the Lord, praise the Lord,
Let the earth hear His voice!
Praise the Lord, praise the Lord,
Let the people rejoice!
O come to the Father, through Jesus the Son,
And give Him the glory, great things He hath done!

 
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Posted by on March 2, 2010 in Uncategorized

 

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