The Refining Fire

Malachi 3:3: "He will sit as a refiner and purifier of silver."

This verse puzzled some women in a Bible study and they wondered what this
statement meant about the character and nature of God.

One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study.

That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver.

As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.

The woman thought about God holding us in such a hot spot; then she thought again about the verse that says: "He sits as a refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.

The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's easy - when I see my image in it"

He is Faithful

Every month for 2 years, it's been on the 9th of the month. That is, until this month. This month they said I was being 'suspended' and 'investigated', and 'reviewed'. On October17, we went to the elders and asked in the name of Jesus for prayer for healing. We claimed James 5:14 .... and asked for healing of all sorts. Certainly physical healing, but not just that. We need financial, emotional, spiritual healing as well. The vultures had begun circling, looking for monthly payments.

Today I called my NEW case manager at Liberty Mutual. He was kind, plesant, and easy to talk to - that is an answer to prayer in itself. He confirmed that my case is in APPROVED status, and furthermore that my monthly check was mailed out on OCTOBER SEVENTEENTH.

I don't believe this is a 'coincidence'. I believe it is restoration, an answer to prayers made with faith in the name of our risen Savior. To God be the glory and honor and praise, forever.

Obedience is what He asks. Blessings are on the other side of Obedience.

Ready to Go Again!

The infection is gone, and I have a nice pretty green t-tube in my left ear. Tomorrow morning first thing I'm calling the clinic to see when I can get back in for an infusion. I'm also taking MTX again and I have high hopes that the combination of the two drugs will work. There are so many Sarcoid and RA patients that are reporting positive results on this combination.

In the meantime I fell down the stairs and got a stress fracture on my left foot. The foot doctor said I have so much inflammation in my feet that he wants to fit me with permanent braces on both ankles. I have a 'healing shoe' on my left foot to immobilize it, and a temporary brace on my right ankle. I have to admit the brace makes my ankle feel more stable and better. Maybe it will help me not to fall again too!

Bumps in the Road

I've had an infection for about 4 weeks now. Infections are the #1 risk with Remicade treatments. It came along with bronchitis and an earache and just generally feeling even more puny than normal. Didn't respond to a round of antibiotics, so the ENT Dr. is going to put in a tube and drain it. Until he is done and releases me, I have to stop Remicade treatments. Not that they were doing any good yet anyway, but it's still a setback. When I get back on Remicade, I'll have to get built back up to the full dosing level.

Then there's the foot thing. a few weeks ago I noticed a very painful area on the top of my left foot, which was accompanied by a slight mass. The pain and the mass have both increased since then. My Rheumy looked at it and said it may be a type of benign tumor that sometimes forms at the endings of nerves. I'm seeing a foot specialist next week to get to the bottom of it.

Good Lord, how many more things can go wrong? Ooops.... forget I asked that. I don't really want to know.

Great Headlines from 2005

• 
  Something Went Wrong in Jet Crash, Expert Says
• Police Begin Campaign to Run Down Jaywalkers
• Panda Mating Fails; Veterinarian Takes Over
• Miners Refuse to Work after Death
• Juvenile Court to Try Shooting Defendant
• War Dims Hope for Peace
• If Strike Isn't Settled Quickly, It May Last Awhile
• Cold Wave Linked to Temperatures
• Enfield (London) Couple Slain; Police Suspect Homicide
• Red Tape Holds Up New Bridges
• Man Struck By Lightning: Faces Battery Charge
• New Study of Obesity Looks for Larger Test Group
• Kids Make Nutritious Snacks
• Local High School Dropouts Cut in Half
• Hospitals are Sued by 7 Foot Doctors
• Typhoon Rips Through Cemetery; Hundreds Dead

Gratitude List

I have a warm, safe place to sleep tonight.

I am surrounded by people who love me.

I have things I can do when I feel up to it.

I have been blessed with precious children for a time.

My parents taught me about Jesus Christ.

This life is not all there is.

Something

Alone then not
Either way feels wrong
A piece that doesnt fit
... anywhere
... anymore
What to say, what to do
...whats the point
...anymore
Unsettled in my own skin
....my own body a stranger to me now
Was there ever a point
...to this life
...to any life
...to this day
...this hour
...this minute
...this second
Aliveness is a faint memory
Pain is so familiar
...easing up beside me
...getting comfortable
...makig itself at home
...burrowing its way deep within my bones
...gnawing away
...grinding down
...inching further and further into places it doesnt have permission to be
Pain respects no boundaries
....no schedules
....no plans
....no place
....no lives
....no one

3 Good Days

3 Good Days

It's Saturday night. I've just had 3 good days in a row. Wow, what a blessing. I've spent most of my time with my kids and it's been so wonderful just doing 'normal' stuff together. They are so precious and every minute with them is a gift. What can I say, except thank you God for 3 good days. And if anyone is reading this, some advice: treasure every moment with your family and friends. Those moments can never be taken away from you no matter what happens in the future. Let tomorrow come, tonight I'm counting my blessings.

Small Things

Small changes, just a little at a time. So you don' t really notice too much; but the friend who hasn't seen you for a year gasps in disgust before quickly hiding her reaction under an ever so plesant "Oh it's so great to see you again!"

...Though to be honest the friend who hasn't seen you for a year will probably pass by without so much as a glance, not even recognizing the thing you have become.

Little bits and peices; changes; odd things; 'unusual' things; unwelcome things. The inevitable decay that one expects to meet eventually - but not at 41. Such a surprise, such a mystery, to start sliding down that slippery slope at such an age. With so much left to do, so much left to BE.

At our first meeting, I was unstoppable; just a little time; a little rest - all would be good as new. Now we have been constant companions for these 2 years - everything is different. I know the power, the relentless strength, and the me that I was is only a faint memory.

Every assault digs a little deeper, eats away a little more at your belief that one day you'll 'beat this thing', tearing away flesh and bone and spirit; gobbling it down as if it were a delicious treat.

Its so hard to believe when the scoreboard is always against you and gaining.

I had always prayed for a quick death; just to go in my sleep unexpectedly. Seems like a cruel joke to drag it out like this; just a TINY dose of death EVERY DAY and plenty of TIME to watch it happen.

Just small changes, just a little at at time.

Weathering the Storm

Weathering the Storm

I haven't written in awhile. It's been a tough month. I was diagnosed with "drug induced" Diabetes and it has been a roller coaster. I had no idea how bad Diabetes can make you feel - Nausea, Headaches, Visual Disturbances, Irratable, Sweating, Weakness, Fatigue, MOOD SWINGS - and I've been sleeping about 16 hours a day. I cry at the drop of a hat, and anywhere - I can't seem to control it. Now I'm on Insulin, but not responding like a 'normal' person (is there such a thing?). My Endocrinologist (yes, ANOTHER new specialist to see and PAY) says the Prednisone has made me Insulin resistant and that is why it is taking so much to stabilize my sugar. I take 5-7 shots a day plus two pills and have to check my sugar 8-10 times a day. My sugar has been racing around in the high 400's and it feels like CRUD.

Meanwhile, my Rheumy says the Remicade MUST be working because I cut my Prednisone from 20MG to 10MG and didn't get any worse (I didn't get any better, either). But she says the fact that I didn't have a flare when I cut the Pred. means the Remicade must be working. So she increased the Remicade dosage for my next infusion on June 29. So I guess that's my silver lining in this storm.

Remicade Hope

Hope for Remicade

---

A mother with 2 teenage children had been in so much pain from RA that for years she had basically been homebound, dreading any activity that forced her from her home and into more pain. One Saturday, she said to her teenage daughter, "Hey , lets go hang out at the mall". WOW. She couldn't believe the words had come from her mouth. Her daughter stared, dumbfounded.... then grabbed the car keys. This mother had been on Remicade for some period of time and this was a breakthrough moment for her. Suddenly, without warning, she wanted to do something "normal" wtih her daughter. It was the beginning of remission for her.

---

Another woman was downstairs in her home and needed something from upstairs. She ran up the stairs, grabbed the item, and ran back down. Then she stopped. How many years had it been since she had done that? Several. Something good was happinening to her body. She also had been on Remicade for a period of time. This was a turning point in her disease process.

---

I am basically homebound. I cannot drive more than 1 mile, and then only at certain times of the day because the heavy doeses of pain meds make me a danger to myself and others. Every week, there are more days in bed than out of bed. Even on 60 mg Oxycontin plus breakthrough pain pills, I am in significant pain ALL THE TIME. I have great difficulty breathing and need my oxygen more and more. I can't remember the last time I ran up and down the stairs - but I do remember doing it without a giving it a second thought.

---

Today was my 3rd Remicade treatment. I am up to 400 mg per treatment, and my next treatment is 8 weeks from now. If these other women can receive healing then so can I. It will be great day when I say "Amanda, lets go hang out at the mall", or "Michael, let's spend the weekend in the mountains", or "Will, lets go see a movie". Or maybe it will be "Yes, sign me up for that show - I can't wait to go!".

New Treatment Starts TODAY

Today is the beginning of something new.

Today I start on Remicade. There are brand new studies that show it works on Sarcoid AND RA patients. Since those are my two demons, it sounds like a perfect match. I am HOPEFUL. It's kinda funny, Michael came to me with info on Remicade at least 6 months ago and urged me to look into it. At that time, there were no studies out on Remicade for Sarc, plus my Dr. was concerned about infection, so we didn't try it. But now I've survived a round of Embril, which didn't help my disease, but at least didn't make me sicker. So my Dr. feels more comfortable putting me on Remicade. So we start TODAY. The insurance company is covering it, so all I have to pay is $30 per visit. The way it works is I go to a clinic and they run an IV for 3 hours. That's kind of a bummer, but once it gets "going", I'll only have to go to the clinic once every 8 weeks for an infusion. The other good thing is the clinic is at St. Josephs, so we don't have to go downtown every time. Maybe in a few months I can even drive myself there and back!

It feels good to have hope.

And it's bright and sunny outside.

Confusing

Very Confusing

I've started the slow slipping down off Prednisone again. There must have been some people praying for me because we all made it through this round pretty well. But the taper down, now thats tricky. Everything is surreal and I fade in and out of life. So much of the time not feeling anything except the pain increasing as the pred decreases. Your voice bounces around in my head mixing up the words in a jumble until what I hear is not what you said. The other voices are there too, calling me, always calling me. The tradeoff is in full swing now. I don't have enough pain meds. The pharmacist treats me like a drug addict. I sit in silence. Is there anger in there? Will it come out some day? What did I just say? Was that me or you? Where is home base and can I ever get there again? Ah, HOME. what a word. what a place. what a feeling that must be, to be HOME.

Crazy

Crazy
Ok, so where do I start?
Of course, I woke up feeling like hell. Chest pain unbearble. Popped a few pills, drug myself to the car and took Amanda 1 mile to school. Nearly hit two bushes on my own street driving back, I was so dopey.

Checked on mail from yesterday. Liberty Mutual wants tons of forms signed, plus the names, specialties, address, phone, fax, and treatment dates of all doctors I've seen in the last 2 years. That took 3 handwritten sheets. Jst a little light research to start the day. I understand they have to be vigilant; there are so many people who take advantage of insurance companies. But at some point I wish they could put you in another "non-crook" category and treat you more humanely. All this does not help my recovery.

Logged into eBay. Was I surprised to see hundreds of motorcycles listed under my account! And ll listed with premium features, costing hundreds of dollars charged to my account. So I'm on it. Trying to right the wrong, erase the bad listings, regain my credibility, and most of oall prevent financial damage.

Spent HOURS online with eBay to fix it all. Had to change my eBay password, my e-mail password, my Merchant password, my banking passwords, my blogger password, my Shopping Cart password, my paypal password, my hello password. And I'm sure there will be many more. Now lastly I have to relist all the 'goood stuff' manually on eBay.

Got a call from Emory during all of this. Of course they want their money. Of course they are entitled to it. Of course I don't have it. More stalling and apologies.
Then a call from UTHC. They want their money too, although they just want $500 and they'll be off my back. Of course they deserve it. Of course I don't have it. More stalling.

A horn is blowing outside. It is Lili, coming to take me to Will's teacher conference. I can't drive that far. So I lumber out, full of dread. What will it be this time? How much positive? How much negative? How much presure to put him on meds? There was a detour so we were late. Michael was already there. Yep, mostly negative. And the meds came up again. I'm tempted to do like a 2-3 week trial while he is still in lower school to see if there really is a difference. Will talk to Kathy next week about it.

After the conference, which lasted 30 minutes too long, it's off to the dentist. We were 30 minutes late so they couldn't take him and I had to make an appointment for next Tuesday. So Lili took us back home. By now I'm a basket case and throbbing from head to toe with pain.

At home, I pulled out RatRace and sat down in the den to watch with Will. Amanda came in and promplty removed the video (it's hers) and said it was totally inappropriate for Will. He starts crying and the next thing I know its all about how he hates Mill Springs. Doesn't want to go back there next year, on and on. After about 20 minutes I can't cope with it anymore and go upstairs and lock my door. I pop all of my NIGHTIME meds plus a couple of extra for good measure and close and lock my door. I put in my ear plugs. Maybe I won't wake up.

But alas, wake I did aorund 6:00 to heavy pounding on the door. It was Will. "Can I play with Mickey?" Sure, after you write the 10 commandments on these yellow sheets for your Wed. night homework assignment He does it in less than 5 minutes. I've been trying to get hin to do it for a week.

Michael comes home. He heads around the side of the house to get the DEAD CAT and bury it. Yep, one dead cat laid there under the Kitchen Sink Window. Will found him yesterday. It was truely traumatic. It was Will's new adopted pound kitty, and he was such a sweetheart. Something got him and he died. He was gone for 5 days, then Will found him. The dogs were playing with him like a ragdoll. I had to pick him up an throw him over the fence. Then Michael had to bury him today. Will wanted him buried near the tree that it (Rufus) climbed and stayed in for 4 days, before we paid a tree climber $250 to bring him down.

Now the're all off. Amanda at explorers. Will and Michal at Scouts. Maybe a little sanity for awhlile.

Just another day at the Allen house.

I might have some hair left, but if I do it's surely grey.

A CHOICE

A Choice
There was a choice to make.

The unspeakable pain started suddenly in my chest about a month ago. When I awoke my entire chest felt like glass and movement felt like shards cutting deep through my body. Rising from the bed was and is horrific. After I load up with narcotics, the pain settles into one single long dagger cutting through my lower right rib cage. Excruciating. The Oxycontin doesn't touch it. Neither does the Vicoden.

So the Dr. says go on 40 MG Prednisone. I resist. Stubbornly, I hold out. I hold out because I want to be alive and to be loved and not alone. I want to laugh and make art and music. I want to see beauty. I hold out because I have done that before and it changes everything. I begin to cry out in pain. I can no longer hide it. It engulfs me. It becomes more and more evident that the ER is in my near future to get relief. I think about the hours of waiting, sitting in the middle of God knows what germs with my immune system already totally shot, and having to drag some family member through it all. Then maybe some Morphine, maybe a little relief, but in the end the same old dark friend would be waiting for me: PREDNISONE.

So today I made the inevitable choice. Went up to 40 MG on the Prednisone. What a horrible chemical. The pain level is already different, but still extremely bad. Maybe tomorrow it will be less. Meantime my broom has come out of the closet. I am like a stranger to myself. I look in the mirror and I don't see a wife, friend, daughter, mother. I see a deep dark pit of pain, sadness, and rage, murderous rage; like a dark force has dug its claws down deep in my soul and rooted itself in. Like it wants to stay there forever and evict me from my own soul, my own life, my own mind. It mocks me, laughing at it's strength and my weakness. It's power is staggering, its' purposes pure evil.

Life is going on around me, I know it is. But I am unplugged, there is a ditch deep and dark and wide and inpassable and I am alone on the other side of it.

No not alone exactly.

I have my PREDNISONE.

The Next Thing to Try

Ok, so we struck out with Methotrexate, Antibiotics, and Embril. Now the doc says we should try Remicade. So I'll be starting treatment in late March or early April. This is a drug that shuts down your immune system (like MTX and Embril), but in a different way. It has been in use for RA patients for some time and there are now studies showing it can be successful for SARC patients. Thats me, a double winner. So the doc seemed excited to try it. I don't even want to read the side effects; maybe if I don't I'll have a more positive attitude about trying it. For today, my goals are to stay ahead of the pain and be kind to people around me.

Is it Possible?

Is it still possible?
To go to the fresh fruit market on Tuesday morning,
To watch a boat race in the bay,
To watch whales while having lunch on a terrace,
To stop on the road and watch that magnificant sunset.

Wednesday Night

Unyielding, pressing in, the ache so deep
Like fire daggers through my bones
The tears flow
They just come when they come; there's no stopping them
Every once in awhile there is a glimpse of the 'old me'
The glimpses are brief, few and far between
Who are they for?
How will it end?
How long will it last?
The distractions are a temporary hide-out
A way to create something beautiful
Even if it's only beautiful to me
To try to hide all the ugliness and pain
To try to remain among the 'living'
While I 'live' from pill to pill
The real me getting sucked deeper and deeper into a foggy pit
A vacant pit behind my blank stare
When I look at you and can't remember your name
Or mine