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POTS UPDATE ON SARAH

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A great deal of progress has been made since I last posted two months ago about Sarah’s POTS’ saga.  The purpose of sharing our journey is to get the word out about POTS (Postural Orthostatic Tachycardia Syndrome) and dysautonomia.  We also want to share any treatments that have worked for Sarah in hopes they may help others on this journey.

First of all, we’re very happy to have found an Electrophysiologist (which is a subspeciality of cardiology) who treats POTS.  This new doctor is only about an hour from our house so we’re very glad to have found him.  We met with him for the first time in February with subdued hope that he would be able to treat Sarah.  So far, after seeing him only twice and following his recommendations, Sarah is so much better!  Let me explain…

During our first appointment, this doctor informed us that she was drinking way too much water.  Whoa!  Wait a minute!  Everything we read and have been told up to this point (for the last six months) has instructed POTS patients to increase water intake!  Of course, she has been increasing her salt intake also during this time, but apparently by drinking so much water, she was simply flushing it right out of her system.  He also told her to begin drinking Gatorade because she needs the electrolytes.  This was revolutionary for Sarah!

We immediately stocked up on Gatorade but also found an organic sports drink on Amazon that is on order, along with the salt tablets that the doctor suggested.  Now, the Gatorade and decrease in water alone have not been miracle cures; however, they have single handedly aided more in her recovery than anything else aside from the Florinef!

She has had far less fatigue and her stamina has increased incredibly so.  She is still experiencing heart palpitations and the doctor has ordered a 24 hour heart monitor for her to wear for two weeks.  We should receive that any day now.  I think that will tell the doctor in greater detail exactly what she is experiencing.

Her former cardiologist ordered a post-event heart monitor but it only captured tiny snippets of cardiac information, so I feel this will be far more telling.  Sarah is off the Atenolol, which was disastrous.

Also, another disastrous drug for Sarah was Corlanor, which the new doctor prescribed.  She only took one dose, but its effects almost sent her to the ER.  We had a very scary few days.  As with any drug, some work for some patients and not for others.

We met with the doctor a few days after the bad episode and were apprehensive that he would simply write out a new script for another potentially disastrous drug. We prayed he would have wisdom to know how to treat our Sarah and I believe he did.  That was when he ordered the heart monitor.  I am thankful that he is digging deeper to seek to understand rather than gloss over her symptoms.

Before meeting with the Electrophysiologist, I prepared a cover letter to the doctor along with Sarah’s medical history and recent lab work results.  In the letter, I stressed the importance of obtaining treatment for our daughter and if he felt that he could not treat POTS, to please let us know prior to her appointment.  I stated that we did not wish to waste his time, nor ours.  We’ve seen enough doctors in the last six months and cannot afford to run in any more circles than absolutely necessary.  Included in her medical history was a chart with all of her diagnostic testing she’s had done (CT scans, etc.) so that he could clearly see the larger picture.  I believe the more information any doctor has (especially a specialist), he is in a better position to accurately treat the patient.  (not to mention, this prevents redundancy)  Yes, we have requested medical records from previous doctors, however, we have become keenly aware that often times, things fall through the cracks.  So, we take it upon ourselves, in the interest of trying to obtain effective and thorough treatment, to deliver as much information as possible.

So, I said all of that to say … After the doctor read through our little package that preceded our visit, I’m certain he understood the importance of attempting to find treatment.  I do believe Sarah is finally in competent hands…finally!  Her last cardiologist flat out told her that he could not treat her for POTS, which is why we had to find another doctor.  So many doctors, even specialists, know very little, if anything about POTS.  Since our family has never encountered a situation like this, it has been very frustrating.  I don’t think one could truly understand unless you walked through it.

POTS is not necessarily a common illness, however it is estimated that between one million and three million people in the U.S. have it!  Wow.  Sadly, it is often misdiagnosed or not diagnosed at all. It has been called the “Invisible illness”.  If you looked at my daughter, you would see a beautiful young lady, inside and out.  She’s lovely.  Sarah is our only daughter and she’s so very special to her mom and dad!  A priceless gift!  We always tell her she’s so beautiful!  (because she is, even if she rolls her eyes, understanding that her parents are naturally biased!)  But, to look at her, you would think she is just fine.  However, POTS is a dysfunction of the autonomic (things that function on their own) nervous system.  So, all these functions are happening on the inside of the neurons and axons … all invisible to the eye.

In reality and every day life for Sarah, there are lots of things happening!  When she gets up, she feels dizzy sometimes.  She’s often nauseated because the digestive system is also impacted by POTS.  She eats gluten and dairy free and is very particular about what she eats, but problems still persist.

The fatigue has improved with the advent of Gatorade but she still has limitations.  Sleep is a big problem.  Perhaps the greatest problem at the moment is the heart palpitations and sometimes heart racing.  Those are scary symptoms for anyone, let alone an 18 year old.

Lately her joints and muscles have really been bothering her and per the new doctor’s advice, she will see a rheumatologist in May.  Often she will use essential oils on her joints to ease the pain.

I’ve only outlined the most prominent symptoms at the moment, there are seemingly countless others.  There is virtually no part of the body that POTS does not affect.  It’s all very mysterious in a way, like a maddening puzzle to solve.

We are, however, very encouraged these days to be on a good path after so many dark days!

I just want to encourage you to never give up hope if you or someone you know is sick.  Keep knocking on doctor’s doors until you find someone who knows something!  I used to think doctors were experts in all things.  Nothing could be further from the truth.  Often through this ordeal, I have felt like they must be handing out medical degrees these days!  There are excellent doctors out there … it just may require a great deal of work and patience to connect with them!  But don’t give up!

My belief is that God is healing our Sarah bit by bit every day and that one day, she will walk out of this phase – completely healed!  Some days are dark.  Some days give us such hope.  But no matter what we see, our faith encourages our hearts to keep putting one foot in front of the other and press on!  Our miracle is just around the corner!

 

 

{Disclaimer:  I am not a doctor.  Nor do I play one on t.v.  Any medical advice is for informational purposes only.  Do research and seek out professional help for your particular situation.}

 

 

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I did 20 Years…and so did he

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A rather persistent, mutual friend insisted that I meet “this guy” that would be just perfect for me.  I brushed her off a couple times as I’d recently come out of a hurtful relationship and besides I preferred things to happen naturally.  Nonetheless, I humored her and agreed that she could give “this guy” my phone number.

He called and in a matter of a few conversations, we fell in love.  We had many subsequent, lengthy phone calls in the evenings after work.  Each of us couldn’t wait for the next time we could speak!  I agreed to attend a Christian concert with him and some other mutual friends.  After the concert, we all went out to eat.  I was starving.  Literally, I could hear the acids in my stomach raging but I was too nervous to eat.  I opted just to have a Coke and upon “this guy’s” insistence, a few of his fries.  I was so hungry, yet I wouldn’t eat.  Ah, young love.  Well, we talked all night and our love story was sealed that June evening.

We were engaged on Christmas Day and married the following June, 20 years ago.

What is the secret of staying married until death do you part?

I like the quote I’ve seen around, “We were born in a time when divorce was not an option.”

or this one:

“I was born in a time when if something was broken, you fixed it.”

There’s something to those sayings.  It’s called removing the option of giving up, of throwing in the proverbial towel, and pushing up your sleeves and working on it.  A little elbow grease.  Effort.

Marriage is hard work.

There are no two ways around it.  But did you ever have a relationship that wasn’t?  We are all enshrined in this flesh called humanity, and as such, we have tendencies of failure.  We also have huge capacities to love.

And in my Bible it says that love conquers all.

Love hopes.  Love keeps no record of wrongs.  Love does not boast.  Love places the other before self.

That’s what love looks like.

Yes, love is hugs, kisses and all the physical trappings that accompany the marriage relationship and make it one of the most beautiful unions.

Sometimes life requires more than mere hugs and kisses.

Sometimes it demands forgiveness, forbearance, time, selflessness.

The demands of family, work, finances can be absolutely draining.  And sometimes one can feel like you have nothing left to give.  There are certainly seasons like that, especially when the kids are young.

We are happily at the stage now where our kids are nearly grown.  The two younger ones at home are 16 and 18.  Our oldest left home quite a few years ago and is 27.  So, the physical demands on us are fewer than they were years ago.  But during the years of great demand, that’s when dating your spouse really is important.  Carving out “couple time” is crucial to staying on the same page emotionally.

Twenty years now.  This June it will be 21 years!  God sure has been faithful to us.  We’ve weathered some fierce storms, times when throwing in the towel sure had its appeal.  If we succumbed to giving up, we would have forfeited the most precious love we share today.

When we were newlyweds, our euphoric love seemed incredible – like Fourth of July fireworks!  We thought it couldn’t get any better than this!  We were so young and naive.  Weathering the storms of life together creates an undeniable bond and deeper love than one could have imagined.

Am I thankful for the storms?  Well, maybe I am.  Strange as that sounds.  Without them, I would not have seen the sweet expression of love and care when my husband has brought me soup when I’ve been ill.  Without the challenges, we wouldn’t realize how desperately we needed one another.  Without the adversities, we would not know the grace and mercy of God as displayed through the other.

You know, friends, when we love our spouses, we are honoring God.  And when God is honored, there are blessings!

One of the most meaningful things my husband and I do together is pray.  When our hearts are overwhelmed, we invoke God’s presence and power into our lives.  When our hearts are full of thankfulness and joy, we express that, too, in prayer.  God is such a vital part of our relationship and He has always been.  I encourage you to pray with your spouse if possible.  God truly honors the unity of prayer.

Not only that, but I believe there is power in prayer.  Sometimes the most spiritual prayer is – “Help!”   God is close to the brokenhearted, my friend.

My husband and I are testaments of God’s grace and His power at work in our hearts.  The beauty of being married for a while is that before long, you know the other’s heart.  My husband knows what I will and will not do and vice versa.  Our hearts trust the other.

So, love begets trust.  And like a garden.  If left untilled, weeds will grow.  Don’t neglect your most precious relationship.

The grass is not greener on the other side.  There are weeds over there.  Till your own garden and your marriage will flourish.

What you invest in, you will reap the harvest.  Invest well.

 

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We’re Under Contract…

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After four, long months of feverish house hunting, we are seriously under contract on a house!!  If all goes as planned, we should close next month.  Yay for us!!  🙂  God has answered our prayers!

To say the Florida real estate market is rebounding would be more than accurate, particularly in our area.  As soon as one comes on the market, it is swiftly scooped up.  It seems out of state investors are in full force and my only prayer is that it doesn’t lead to a repeated bubble.  At any rate, here we are.  Elated doesn’t begin to describe our feelings at the thought of being liberated from our tiny abode, otherwise known as our apartment.  I really shouldn’t complain as 1,500 square feet is not small, however my disdain for it has more to do with my desire for a more permanent situation.  I’m so looking forward to hanging curtains, unpacking all of our boxes, organizing and decorating!!

Before any of that happens, the house needs to be painted and new flooring!  So, despite a possible closing next month, we will not likely move in until sometime in May.  But, at least, things are headed in that direction!

The master bathroom also needs to be gutted because of mold behind the shower wall, so we’ll completely renovate the master bath prior to move in also.  The thought of a claw footed bathtub sounds delightful!  I think I have finally convinced my husband of their popularity and how nice it will look!  I love all things antique-y and he leans more toward trendy, although sometimes we actually meet in the middle of what I’ll call “classic” style.  Haha.

We definitely will take loads of before and after renovation pictures and I hope to have a few spare moments to share them with you!

I have a “coastal” theme in mind for the living room … a white couch with coral print accent pillows paired with turquoise or slate blue print accent pillows; a white coffee table and end tables (one end table square & one round perhaps); two coral print accent chairs… This is what my thoughts are so far for this room.  The white couch has a slip cover, which can be easily machine washed.  I’m all for practical decorating ideas.  This is so exciting to me because it’s the first time in our twenty year marriage that I’ve actually hand picked our furniture.  Most of what we’ve owned in the past has been second hand or a concession I’ve made to my husband’s tastes.  This time around, I actually have a firm idea of what I want!  Only took me twenty years!  Haha.

We will have a large family room downstairs, but we already have a couch, love seat and tables for that room.  We sold our formal dining room set before we moved so we will need a new set.  I really like the farmhouse tables I’ve seen around and would love something very durable, yet pleasing to the eyes too.  A cross between casual farmhouse and elegant every day style.  Does that exist?  I don’t know, but what I do know is we will have many family dinners around this table and that they will eventually include grandbabies.  I don’t want to worry about every nick and scratch on our new furniture.  So…that’s the idea behind that.

We already have friends who want to come visit us this summer and my dad is already planning his visit for Thanksgiving!  So, we’ve got to get settled in quickly!  🙂

The house we’re purchasing is a short sale and, honestly, there have been very few “updates” since the house was built in 1988!  It’s as if the house is stuck in a time warp.  Now 1988 was a great year.  It is, after all, the year I became a mother for the first time!  However, homes need a little TLC and updating every now and then!  The previous owners had a cat and the carpet has long done its duty.  So, that is one reason the floors need to be redone.  I have bad allergies to cats, so that’s a non-negotiable.

The 80’s watercolors cornice boards will be one of the first things to come down.  Hideous!  Haha.  I personally adore natural lighting and the back of the house allows plenty of that with all of the gorgeous windows.  So, I’m not sure I’ll want anything but blinds.  We’ll see.  At least that’s not something that requires immediate attention.

My husband and I made a list with two columns.  One for immediate items that need renovation and the other for items that can wait, but definitely need attention.  We also attached approximate dollar amounts to each area, so we have a general idea of our future expenditures related to the house.  We weighed our total investment against the average CMA in our area.  In the end, our investment still makes sense.  We showed our analysis to our trusty realtor (who’ve we’ve spent a great deal of time with over the last four months!!) and he commented that he’d never seen anyone ever do this before!  I couldn’t believe that!  Especially when one is purchasing a short sale that needs a lot of work, one must count the cost!

We’ve had every conceivable home inspection performed recently!!

We had the following inspections:

  • the general, extensive home inspection (including the pool)
  • mold & radon
  • termite
  • structural engineer (to check an area of concern)
  • well (& sent water sample to lab for testing)
  • septic (& had it pumped out)

I think that just about covers it!  Whew, what an exhausting time!  Although these inspections can add up to a big chunk of change, we feel like they offer a bit of insurance or, at a very minimum, a glimpse of what upcoming expenses may be. After all we went through with selling our previous house and having to pay so much for items that failed the home inspection, we wanted a very thorough picture of what we might be dealing with in advance!  This way, we limit our surprises!  Word to the wise…

This house is really special.  If we didn’t feel that way, we would not be willing to invest so much into it.  It’s in a wonderful neighborhood that is close to everything you’d need, yet in a peaceful surrounding.  There is a creek with rushing water that runs along the backside of the house, which funnels into a big river.  Yet, we are not in a flood zone.

Once we close and the dust settles, I will take some pictures, particularly of the back of the house.  The scope of the glass on the back of the house is amazing and beautiful!  I call the house a “diamond in the rough”.  Haha.  For some, maybe the present state of the house would be alright, but for us, we know it can really shine and be so much more!

We’re looking forward to the transformation!  Hope you’ll join me on this journey…

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Merriest of Christmases to You!

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“For unto us a child is born, to us a son is given, and the government will be on his shoulders.
And he will be called
    Wonderful Counselor,

                                      Mighty God,
                                                          Everlasting Father,

                                                                                                Prince of Peace.”    

                                                                                                                                      ~ Isaiah 9:6

Just wanted to pop in real quick to wish you all a very Merry Christmas and a Blessed New Year!

What makes a Merry Christmas?  What are the prime ingredients?

Is it the presents wrapped with beautiful paper and tied with elegant bows?  Is it found in owning the latest in technology?  Or can it be found under the Christmas tree at all?

I have received my Christmas gift already but it wasn’t wrapped or nestled under the glowing lights.

The greatest gift of all is found in knowing the love that God so extravagantly displayed in sending His one and only Son into this depraved world so that He would grow into a man, who would take our sins away and put us in right relationship with the Father.

That is the message of the Gospel.

It isn’t complicated.  It is simple.  God loved.  God gave.

It is up to us whether or not to receive such a priceless gift, the gift of spending eternity with God.

It’s just that simple.

Man tends to complicate matters, but the message of the Bible remains unchanged, unaltered throughout the ages.  It’s the message that you are a valuable soul and God loves you too much to spend eternity apart!

Won’t you accept Him today?

If you already have, then you have all that is necessary to have the Merriest of Christmases!  Jesus, the perfect Gift!

To top it off, on a personal note…

Our family has sold our house and recently moved 1,000 miles to be near our grown son.  We could not be happier to be spending our first Christmas together in the same area.  (More on our big move to come…)

To all my WP friends, new or old, here’s wishing you a very Merry Christmas and a happy and healthy New Year in 2015!

“And, now my brothers, I wish above all things that thou mayest prosper and be in health, even as thy soul prospers.”  ~ III John 2

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We Have a Contract!!!

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Special thanks to all who’ve prayed for our house to sell!!  God has answered prayer and we are ever grateful!!!

As most of you know, we’ve lived 1,000 miles from our grown son for five years now and it’s been my prayer for most of that time to move back!  I feel like I’ve missed so much!  He’s 26 and we’re so excited to live closer very soon!!

The real estate market has been sluggish, especially during this time of year.  So, that’s been one challenge we’ve faced.  However, the greatest challenge has been being separated from my husband, who began his new job in early September where we will be moving to!  We’ve been married for 19 years and have never been apart more than two weeks at a time!  This has been so hard on us, despite all the modern technology advances (i.e. Skype, texting, phone calls, etc.).  He’s flown here and I’ve flown there, but nothing replaces sharing daily life together!

Our two younger kids are 15 and 17 and they are overjoyed that we will all be reunited very soon and can move on with our lives!  (The umpteen showings were really beginning to wear on all of us!)  They’ve handled this transitional period very well and are always a big help.

So, now the rush is on to find an apartment to lease until we do our homework and find a house to purchase.  I’ve narrowed it down to four!  🙂  I’ve done the legwork and now my husband will investigate further.  Then, the next thing is to reserve the Uhaul.  Yes, we’re “Do it Yourself-ers”!  🙂  Fortunately, we’ve gotten rid of a lot prior to listing our house, done preliminary packing and are selling some furniture.  I’m anticipating a smooth move with far less than we moved into this house with.  We’ve moved quite a few times over the years, so we have this down to a science.

The home inspection is this weekend and the septic tank inspection is Monday, so we’ll be glad when those are behind us.  Although, we do not anticipate any issues.  It’s just nice when that hurdle is over.

We will be moved just two weeks before Christmas!  What a Christmas present!!  I can’t think of a better one!  All of our children together!  My husband and I absolute love the Christmas season, so this will be really special!

Just wanted to pop in long enough to share our awesome news of the Lord’s provision!!

(I’ve been interrupted every two seconds by my teenie boppers while writing this, so pardon if it’s choppy!  Some days I think I have preschoolers.  😉  These are the days I will miss soon.  My daughter graduates from high school in May and will be in college next year.  And my 6′ 15 yr. old is growing faster than I can believe!)

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I’m Still Here…

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So, it turns out I haven’t dropped off the face of the earth, friends!! Our family continues going to physical therapy three times a week as we recover from our car accident in May. We’re all doing fairly well…still in pain every day … but praying our way through and believing for God to bring total and complete healing!

THE BIG NEWS IS …

No, I’m not pregnant! Ha! I hope not at age 40 something! …

The real big news is … we are moving five states away (1,000 miles!) to be closer to our grown son!!! Those who’ve followed my blog for some time know how much this mother has missed her #1 son (for 5 long years now)! God has opened the door for my husband to transfer his job and we are so excited about this breakthrough for our family!!!!! Can you sense our excitement?!?!

I should specify how huge of a breakthrough this really is … First of all, for over four years my husband has been against the idea of moving. I learned a valuable lesson throughout this process…Take the desires of my heart to the Lord in prayer, leave them there and keep quiet. This has not been easy, I have to say. (especially considering how badly I’ve wanted this to happen!) But, God is faithful and I will be ever grateful to Him for opening this door for us!!

Our house went on the market today and we are praying for a speedy and solid sale!

Would you agree with me in prayer? I’d definitely appreciate it. Our prayer is for a quick sale and full asking price. There is nothing too hard for God!

We’ve been working feverishly getting our house ready to put on the market, packing extra things away, doing lots of touch up painting, etc. We laid 20 bags of mulch the other day in the front flower beds and it still wasn’t enough. Looks like we’ll need about 10-15 more! My husband only has a couple projects to complete and we will have this exhausting phase behind us! The photographer came out yesterday to take pictures of the house and install the lockbox. Exciting stuff!!!

As soon as the dust settles, I’ll return to blogging regularly but I wanted to check in with my WordPress friends! Miss you guys! God bless! 🙂

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Excellent News!!!

The sun is shining and this caregiver’s heart is elated that my dad is nearly ready to return to his home!!!  It’s been quite a couple of weeks but my dad is gaining strength daily and is determined to make a full recovery!  Praise the Lord for answered prayer!!

I laid out a fresh change of clothing for my dad early this morning.  So, he washed up, shaved and changed.  He tried to tell me that he’d change after the nurse and therapist left, but I told him that defeated the whole purpose.  He conceded my point… (He likely will be glad when he doesn’t have “Nurse Meanie Pants” to boss him around once he gets back home!  … I can’t help it – Personal hygiene is important.)  Then I fixed him a bowl of oatmeal and gave him a glass of orange juice for breakfast.

The visiting nurse came out this morning.  More than anything, they talked baseball!  She shares my father’s affection for his favorite team, so she didn’t mind their lengthy discussion.  She did take his blood pressure and listened to his lungs and heart.  That’s about the only medical function she performed.  I’m hopeful that, given my dad’s good lab report from last week, he can go to a 2-3 week re-check schedule.  Next week begins a seemingly continuous cycle of doctor visits, so I don’t think we will require the visiting nurse’s services after that point.

The physical therapist arrived just minutes after the nurse left.  She had my dad go down the front steps and walk to the driveway and back into the house.  We all were impressed with how well he did.  I think he may have even surprised himself!  He can nearly walk normally now.  I tell you, each day we are seeing great improvement in many regards!  What a testimony of God’s goodness, healing power and mercy!!  He is ever faithful.  I know my dad was glad to get outside and absorb some of the gorgeous sunshine!  I noticed my hyacinths are beginning to bloom and a couple of my daffodils have bloomed.  Spring, how we love thee!!

I was unsure when my dad would be able to return home, but when the physical therapist mentioned that she thought it would be soon, I was blown away!  She suggested that we’ll take a field trip to his house to see how he does, which is a great idea.  The therapist asked my dad if he’d been home to visit yet.  To which he replied, “She won’t let me!”  He was joking, but it’s true.  One day early last week he asked if he could ride with me, and, at that point, he had not regained the strength he has now.  The therapist doesn’t think her services will be required much longer, which is great news too.  I tend to agree.

Tomorrow we’ll see how my dad navigates the steps at his house.  If all goes well, he should be able to return home this week.  I know he’ll be thrilled.  And, I have to say, it’ll be good to have a break from the almost constant care of the last two weeks.  Not to mention, we’ll be able to return to a more functional school schedule!  Our lives and schedules have been completely turned upside down due to his illness.  The Lord truly knows how much we can bear and I’m ever grateful that my dad is recovering so well!  It’s really miraculous considering he was at death’s door two weeks ago!  He is very stubborn and has a real determination to be independent, which serves him well.  I’m sure the ER doctor would be amazed at his progress.

To God be the glory!!  Great things He hath done!!

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