How Quickly Your Life Can Change! #1
This journey began with the first twinges of pain on 23 May and a diagnosis of Shingles at the ER on Memorial Day, after returning from a weekend trip to Texas where Neil performed the wedding for one of our "Panama Kids". I enjoyed the time with friends, but the pain increased exponentially each day.
The Shingles, which attacked only my right arm -- and yes, I am right-handed, seemed to have about run their course. I'd continued to work every day, although not totally full days sometimes, and was dealing fairly well with the intense shoulder pain (God bless Vicodin!!) when this Post-herpetic Neuralgia hit with a vengeance. This took me to a whole new level of pain intensity!
This is the way it works. My arm is always sensitive. It feels "alive"or "electric"-- a burning sensation from just to the right of the back of my neck (which originally was not involved in the Shingles at all), across my shoulder, and all the way down to my wrist and the bottom knuckle of my thumb. There are maybe 7 incredibly sensitive "hot spots", and a few places you can touch without hurting me, but VERY few.
When I get what I've labeled a "Pain Attack", it feels as if someone is putting a branding iron against the inside of my upper arm, and that hot, searing pain rolls up and down the arm two or three times, across the shoulder, up the neck, and stops at the base of the skull, leaving me feeling as if my head will explode. Although initially, when these began a week ago Sunday, I could tough out a pain attack, and they lasted maybe 30 seconds, they have increased in intensity and duration, now ending in about 2 or 3 minutes and leaving me a quivering, groaning puddle of pain. I cannot NOT groan aloud, no matter how hard I try, although initially I could and have gotten through a few of them in a group setting without people knowing what was happening, in the early pain attack days.
Now, I'm on Gabapentin, typically an anti-seizure medication but that also usually works well on this type of nerve pain. One must increase it gradually, which we've been doing for a week & a half. Yesterday, when the doctor realized how incredible the ongoing pain of both the attacks and the extra-sensitive arm was, he did increase it significantly. But he also added another diagnoses, which we really do not yet understand: Autonomic Dystrophy. Initially he wanted me to see a neurologist, but he called today and said he felt as if a Rehabilitation Specialist would be the better choice. I have an appt for next Monday, altho not with the doctor he recommended, but with his partner.
Yesterday, I was down to four pain attacks, which is a huge praise. I'll be extremely happy when we're down to none! But the sensitivity and constant burning pain and extra-sensitive "hot spots" on my arm have increased so that last night I was in agony all night. Nothing could touch my arm, and my arm hurt just resting on the sheet. It was a long and difficult night.
Neil and I talked to the doctor about long-term prognosis, and he said "You're in this for the long haul." Not precisely the words I hoped to hear! When we talked about my job, he suggested I quit. Neil and I met with my wonderful boss yesterday afternoon and agreed on an indefinite medical leave of absence. How I hate to do that, as I love my job so much, the people with whom I work, and the mission of Transformation Ministries. However, I am looking at long-term health decisions, and I have to be the priority here in order to recover fully and to have ongoing optimal health.
I also have been referred to a Rehabilitation Specialist. Initially, I was going to be sent to a Neurologist, but this morning the doctor called to say that he'd pondered my situation more and thought the Rehab Specialist would be a better option. I have an appointment on Monday, and we'll see where we go from here.
I am more surprised than you at what's happened in my life over the past 4 1/2 weeks, since the first twinges of shoulder pain began. Never would I have believed at that point in time that I was heading into an incredible and excruciatingly painful journey . . . with an end not yet in sight. How quickly your life can change!!
If you are 50 or older and have had chicken pox, or if your parents or grandparents are, I strongly recommend talking to your/their doctor about whether you/they should get the Shingles vaccine. You really do not want to go the Shingles route -- or even worse, the Post-Herpetic Neuralgia route!!
As God would have it, I sang at a women's tea a couple of weeks ago, little knowing that the words to the song I was asked to sing would bring me great comfort through this tough time. The words are below, in case you're interested.
You know how much I would cherish your prayers -- for the long haul, since that's what we're facing!
~ ~ ~ ~ ~
Trust His Heart
All things work for our good,
Though sometimes we don't see
how they could.
Struggles that break our hearts
in two
Sometimes blind us to the truth.
Our Father knows
what's best for us.
His ways are not our own.
So when your pathway grows dim,
And you just don't see Him,
Remember, you're never alone.
(Chorus)
God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
When you don't see His plan,
When you can't trace His hand,
Trust His heart!
Trust His heart!
He sees the master plan,
And He holds the future in His hands.
So don’t live as those
who have no hope;
All our hope is found in Him.
We see the present clearly,
But He sees the first and the last.
And like a tapestry,
He's weaving you and me
To someday be just like Him.
(Chorus)
God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
When you don't see His plan,
When you can't trace His hand,
Trust His heart!
Trust His heart!
He alone is faithful and true.
He alone knows what is best
For you!
(Chorus)
God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
When you don't see His plan,
When you can't trace His hand,
Trust His heart!
Trust His heart!
When you don't understand,
When you don't see His plan,
When you can't trace His hand,
Trust His heart!
Trust His heart!
The Shingles, which attacked only my right arm -- and yes, I am right-handed, seemed to have about run their course. I'd continued to work every day, although not totally full days sometimes, and was dealing fairly well with the intense shoulder pain (God bless Vicodin!!) when this Post-herpetic Neuralgia hit with a vengeance. This took me to a whole new level of pain intensity!
This is the way it works. My arm is always sensitive. It feels "alive"or "electric"-- a burning sensation from just to the right of the back of my neck (which originally was not involved in the Shingles at all), across my shoulder, and all the way down to my wrist and the bottom knuckle of my thumb. There are maybe 7 incredibly sensitive "hot spots", and a few places you can touch without hurting me, but VERY few.
When I get what I've labeled a "Pain Attack", it feels as if someone is putting a branding iron against the inside of my upper arm, and that hot, searing pain rolls up and down the arm two or three times, across the shoulder, up the neck, and stops at the base of the skull, leaving me feeling as if my head will explode. Although initially, when these began a week ago Sunday, I could tough out a pain attack, and they lasted maybe 30 seconds, they have increased in intensity and duration, now ending in about 2 or 3 minutes and leaving me a quivering, groaning puddle of pain. I cannot NOT groan aloud, no matter how hard I try, although initially I could and have gotten through a few of them in a group setting without people knowing what was happening, in the early pain attack days.
Now, I'm on Gabapentin, typically an anti-seizure medication but that also usually works well on this type of nerve pain. One must increase it gradually, which we've been doing for a week & a half. Yesterday, when the doctor realized how incredible the ongoing pain of both the attacks and the extra-sensitive arm was, he did increase it significantly. But he also added another diagnoses, which we really do not yet understand: Autonomic Dystrophy. Initially he wanted me to see a neurologist, but he called today and said he felt as if a Rehabilitation Specialist would be the better choice. I have an appt for next Monday, altho not with the doctor he recommended, but with his partner.
Yesterday, I was down to four pain attacks, which is a huge praise. I'll be extremely happy when we're down to none! But the sensitivity and constant burning pain and extra-sensitive "hot spots" on my arm have increased so that last night I was in agony all night. Nothing could touch my arm, and my arm hurt just resting on the sheet. It was a long and difficult night.
Neil and I talked to the doctor about long-term prognosis, and he said "You're in this for the long haul." Not precisely the words I hoped to hear! When we talked about my job, he suggested I quit. Neil and I met with my wonderful boss yesterday afternoon and agreed on an indefinite medical leave of absence. How I hate to do that, as I love my job so much, the people with whom I work, and the mission of Transformation Ministries. However, I am looking at long-term health decisions, and I have to be the priority here in order to recover fully and to have ongoing optimal health.
I also have been referred to a Rehabilitation Specialist. Initially, I was going to be sent to a Neurologist, but this morning the doctor called to say that he'd pondered my situation more and thought the Rehab Specialist would be a better option. I have an appointment on Monday, and we'll see where we go from here.
I am more surprised than you at what's happened in my life over the past 4 1/2 weeks, since the first twinges of shoulder pain began. Never would I have believed at that point in time that I was heading into an incredible and excruciatingly painful journey . . . with an end not yet in sight. How quickly your life can change!!
If you are 50 or older and have had chicken pox, or if your parents or grandparents are, I strongly recommend talking to your/their doctor about whether you/they should get the Shingles vaccine. You really do not want to go the Shingles route -- or even worse, the Post-Herpetic Neuralgia route!!
As God would have it, I sang at a women's tea a couple of weeks ago, little knowing that the words to the song I was asked to sing would bring me great comfort through this tough time. The words are below, in case you're interested.
You know how much I would cherish your prayers -- for the long haul, since that's what we're facing!
~ ~ ~ ~ ~
Trust His Heart
All things work for our good,
Though sometimes we don't see
how they could.
Struggles that break our hearts
in two
Sometimes blind us to the truth.
Our Father knows
what's best for us.
His ways are not our own.
So when your pathway grows dim,
And you just don't see Him,
Remember, you're never alone.
(Chorus)
God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
When you don't see His plan,
When you can't trace His hand,
Trust His heart!
Trust His heart!
He sees the master plan,
And He holds the future in His hands.
So don’t live as those
who have no hope;
All our hope is found in Him.
We see the present clearly,
But He sees the first and the last.
And like a tapestry,
He's weaving you and me
To someday be just like Him.
(Chorus)
God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
When you don't see His plan,
When you can't trace His hand,
Trust His heart!
Trust His heart!
He alone is faithful and true.
He alone knows what is best
For you!
(Chorus)
God is too wise to be mistaken.
God is too good to be unkind.
So when you don't understand,
When you don't see His plan,
When you can't trace His hand,
Trust His heart!
Trust His heart!
When you don't understand,
When you don't see His plan,
When you can't trace His hand,
Trust His heart!
Trust His heart!
posted by Patty @ 6:24 PM
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