How Quickly Your Life Can Change! #2

I told you about the Memorial Day Shingles diagnosis -- truly a memorable day -- and the ongoing diagnosis a couple of weeks after that of Post-Herpetic Neuralgia, followed a week later by the third diagnosis of Autonomic Dystrophy. And now for a recap of the week . . .

God's touches of love and grace, which are hard to capture briefly:

~ Transformation Ministries, my employer, sent out what we call an "e-blast" -- news that needs to get to our people now -- asking for prayer for me and announcing that I was taking an indefinite medical leave of absence. That was quite a touching surprise to me, and the responses that came back, all of which were forwarded to me, were overwhelming. Yes, I responded to each one. Between our TM pastors and people's prayers, and those of so many other family, friends, and their churches, there is no doubt that I am thoroughly covered by the prayers of God's people.

~ My cousin, Ted, a doctor in Canada, wrote an amazing e-mail about his journey, which parallels mine. Despite the fact that he shared he could not wear a shirt for 6 months (his chest was where he was attacked), and that he was not totally over this for a year, his e-mail blessed me beyond belief. I knew for sure that there was an end in sight, and that I could come through this and be healthy again. Praise the Lord!

~ Others, like my friend Faye Powell, have also shared their journey to help me understand what's happening and that I am not alone. It's good to walk with others who know the pain and struggles that come with this.

~ Pain attacks, those absolutely horrendous hot rolling pain that my cousin, Ted, calls "Lightening bolts", have been absent for 5 whole days. Given that two weeks ago I was up to over a dozen one day, this is a HUGE praise! With those gone, it is easier to cope with the other ongoing pain.

~ Offers of meals and help, which we so appreciate, we have turned down, although hoping we did not offend anyone. Neil is a rock, and we are doing fine on that front.

~ For the many e-mails and cards from so many people on this list and in our church affirming their love and prayers and sending words of encouragement.

~ I was able to go to church last Sunday for worship -- the first time in a month. It felt great!

~ Praise that I have a wonderful husband who makes an excellent and patient care giver, chef, and patient chauffeur, going to each medical appointment and taking notes. When you're on drugs and in pain, your brain misses things that need to be remembered. Thank you, Neil -- I love and appreciate you more than words can say!!


What the medical folks are saying:

~ You know my primary care said we're in this for the long haul.

~ Neil and I went to see the Physical Medicine/Rehabilitation Specialist doctor on Monday. She was a delight and spent an entire hour with us. Imagine that!! She raised my Gabapentin yet again, to the highest dosage I can take, and increased the number of daily patches for pain -- Lydoderm patches that can be cut and put on hot spots and worn 12 hours a day.

~ This doctor, as did doctor/cousin Ted, said that I do not have Autonomic Dystrophy. Another huge praise! She did say, however, that we are "just at the beginning of this long journey", and then indicated 6-12 months before I'm totally back to health and strength.

~ Tuesday, I will begin Physical Therapy. Actually, I've already begun, as the Rehab Specialist suggested I work hard to keep my fingers nimble, which includes working on the computer! How great is that -- definitely my kind of PT!!


Prayer Requests:

~ Please join me in praising God for His healing touch! Yes, I still have pain almost all the time. There are minutes in the day when, if I do not move my right arm, I will realize I have no actual pain, although always that underlying feeling of things not being right, but most of the time the pain is much more present, and sometimes I cannot even wear the lightest overblouse because of the sensitivity. I'm grateful it's summer!

~ Nights are the hardest right now. I can sleep 2-3 hours, and then I wake up in really intense pain. I've found that getting up, coming upstairs for tea, a piece of banana, maybe some Ibuprofen or Acetaminophen, reading for a while, then kicking back in the love seat-recliner somehow makes a big difference, and then I can sleep for another 3 hours, if I'm lucky.

~ I do not respond well to sun and heat . . . but cool breezes also raise the awareness of my nerve endings, although not painful like the sunshine.

~ Pray for Neil, for whom I know this journey cannot be easy.

~ Our Panama Reunion next week: many of you know that six families who were together in Panama in the early '80's get together every other year. This group is more important in our lives than words can say. Our 30th anniversary of meeting and beginning this long friendship journey is July. Neil and I are scheduled to leave next Tuesday after the PT appointment -- driving to Sacramento, flying with Chris & Rich and kids to Knoxville, TN, driving to Gatlinburg where we have rented a 13 bedroom/9 bath house for the 43 or so of us who can gather together this year. Please pray that my pain levels are such that I will not be in agony and that I can enjoy this very special time.

~ Your continued prayers for healing and for the guts to suck it up and make myself massage the hot spots, which I need to do per the Rehab Specialist, use the right arm, and work hard on the ongoing physical therapy. Self-inflicted pain: not my thing, but if I am going to get fully well, it must be done, and I do plan to get fully well, hopefully and by the grace of God long before the doctors' predictions!!

How I cherish your ongoing encouragement and prayers!

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 End of an Era

It's amazing, humbling, and deeply touching to look back and see God's hand in things. Today, I'm looking specifically at people with whom we have shared space over the past dozen or so years.

When Neil and I bought this condo so close to Fuller and Old Pasadena, we had no idea God would lead us into a space-sharing mode. It started so naturally when a prospective Fuller student from Michigan came out to visit and stayed a week or so with us, even before we had our condo. Once we were settled so close to Fuller, our condo, nicknamed by one of our Fuller Southwest students as the Frey HORD -- Home of the Revolving Door -- really became popular, for short-term and long-term guests.

During our first two years in the condo, there were these two great guys from Bakersfield with whom we shared space a day or two a week to help alleviate their four-hour round-trip commute each day.

And then there was Jorge, a pastor from Mexico whose family didn't come to Fuller with him. Jorge lived with us for over three years, and what a good thing that was!

After Jorge came a missionary kid whom we loved, who came for a month and stayed for a year. And while he was with us, the son of good friends needed space for a couple of months, so he used the loft. I think those were our only two non-Fuller roommates.

Others of you came, of course, for shorter periods of time -- some needing a place to stay for a week or a month or three before your apartment at Fuller was ready or after you moved out but before you moved away to what God had for you next, some needing space away from your current living situation for whatever reason, some needing space for visiting parents, some needing a more permanent place to live for a time . . .

Looking back on it all, we realize how much richer our lives are because of each of you. We want to thank you for putting up with my "I don't clean; I don't cook" mantra, and for being such good space-sharing people. You have blessed us immeasurably.

Just as God gently opened that space-sharing door, He now seems to be telling us to close it. It's with tears in my eyes that I write this reminiscence, treasuring memories of each of you and your times with us, but we know this is the decision we're supposed to make. We have come to the end of this era of our lives. A Fuller student is moving out this morning, after spending his final couple of on-campus months with us. Our nest will now be empty, the Frey HORD a thing of the past.

But the Frey B&B is still open, so don't hesitate to ask if you're coming for a day or three in the Pasadena area. It would be our pleasure to have you here again!