Friday, March 02, 2007

Busy Hands~*~ Busy Mind

Nine years ago, I experienced an extended stay at Stanford Hospital Pain Clinic. I was there for 5 weeks.

The first week & 1/2 was a living hell, having to detox from all the different medications I was on. They strip you of everything and then slowly experiment with different medicines, giving you a little more or less, here or there.

You have no idea what they are giving you. Your medicine arrives in a small cup with a pink liquid inside. They refer to this as a "blind cocktail."

The goal is that you leave with the greatest amount of physical function possible and the least amount of daily medicine intake. My medicines have not changed in all these years. It doesn't matter how small the amount of regular narcotics taken to manage your pain, when it comes to detoxification, it is one of the utmost worst physical experiences I have ever had.

I think that is why I have been so reluctant to increase my pain medications these last nine years. The more you take, the longer you suffer while in detox. Even just 2 little milligrams per day, can give you one extremely long week of suffering, while it leaves your body's system.

My doctor is currently petitioning for me to get back into Stanford again. We still need to jump through a few more hoops yet, but it is near impossible without doctor's going to bat for you. Stanford is one of the main hospitals working on cures for people with Lupus and Fibromyalgia. My philosophy about having a chronic illness is this...I don't mind spending 50% of my year with symptoms that keep me down, as long as the other 50% is spent decently functional. When the good days greatly decrease, it's time to try new things :-)

So, how do people live with chronic pain without drugging themselves into oblivion? *Distractions* Keep your mind busy. I learned in one of their workshops, that doing things that require great concentration help to keep your mind off of your pain number (lingo for my fellow pain suffering friends ;-) So, I do a variety of things and one of them is designing and making jewelry. Watch out when a bead shipment comes in...sorting beads has got to be one of my most favorite things to do! How crazy is that? Have a fabulous weekend and...

...What do you do when you're in pain?


Blogger Mary Timme said...

Yep, meds are a blessing and a not blessing. Some you have to have when you have chronic pain, but I've been surprised at how little I need to function. Keeping busy does help! Loving you Darlene, loving you!

5:18 PM  
Anonymous amy said...

your jewels are delicious! detoxifying from medication is a horrid experience. i hate that anyone has to go through it. i find that keeping my mind busy with work and study helps but movies and popcorn are a favourite distraction. i hope your doctor's lobbying helps you get the care you need. i hope that Mark's recovery is going well too. take care, amy d.

5:29 PM  
Blogger LEstes65 said...

As always, I will pray - esp for your pain. What do I do for mine? I have never had chronic pain like yours. I have had intense pain for short periods - after many surgeries. Most were as a child so I don't recall what I did. Probably just took whatever they brought me in a little cup. And ate as many popsicles as they'd let me (nurses get a soft spot for returning kids). I have a pretty high tolerance for most pain (again - it's because it's short lived). But I can't take back or tooth pain. Probably because that's nerve pain. And that's a whole other level of pain than muscle or incision pain. I have many friends and family that are former addicts from self medicating due to pain that was not addressed or diagnosed properly. It hadn't occurred to me how you have to detox even from "legit" meds.

I love your works of art. They make me want to wear jewelry again (I'm not a big jewelry person because I'm too lazy!). Your work is beautiful.

I am praying big for your health.


7:35 PM  
Blogger Shaz said...

I hate medication it messes with my mind unfortunately its a nessasary evil.
I wish I had a distraction as beautiful as yours at the moment.
Your such a talent sweet girl on more levels than most.
Keeping busy is the key (when its physiacally possible)
Sometimes the less meds I take and the more I push helps me mentally (its a control thing I think), but as you know we pay later.
So I am at a loss also my dear friend.
You are in my routine of prayer rituals as every day is a day deserving of my prayers for you.
Lovin you always xoxo

10:06 PM  
Anonymous Sophie said...

When I'm in pain or need distraction I try to laugh as much as I can. For example watch a lot of Will & Grace or anything like that. I'll be busy doing other things in the mean time, but when my concentration slips from those activities, W&G will be there instead of thoughts of pain or stress :)

I'll be thinking of you this weekend and sending you some relaxing vibes from the Spa.

Your in my prayers, as always and in my thoughts.

Loving you,

XO Sophie

12:30 AM  
Blogger gerry rosser said...

About 10 or so years ago I woke up one morning with my first awarness that my lower back was troubled. The clue was that the motion required to get out of bed was so painful I couldn't do it. Arranged a hasty doctor visit, and couldn't get it the car (by then I had forced myself out of bed and, with help, put on garments).

So, ever since I have chronic lower back pain, at times I have taken muscle relaxers, and often have taken over-the-counter stuff like Advil or whatever. Lately, I pretty much just "suck it up." I have learned some (probably comical) moves for putting on pants and socks and such things.

Why do I deny myself pain relievers? Well, it ain't masochism. I find that I am a low-energy guy, with a lot of what sometimes is referred to as "brain fog" which makes it hard to focus/concentrate. I find anything which relieves pain exacerbates "brain fog."

What can I say?

5:16 AM  
Blogger Constance said...

I have been dealing with a chronic health issue for nearly 3 years. I have ITP, (Idiopathic Thrombocytopenia Purpura) which is an auto-immune disorder where your blood doesn't clot. The platelets, which clot the blood, are destroyed as fast as the bone marrow can produce them. Blood is filtered through the spleen but for whatever reason, the spleen misidentifies the platelets as foreign antibodies and triggers my immune system to destroy them.

A normal count (however it is measured) ranges from 150,000 to 400,000. I have been as low as 4,000 which is VERY bad. At lower counts not only are you a high risk to hemmorage to death from an internal or external injury, you can also have bleeding in your brain!

I have been in treatment at the Teaxs Cancer Center since my bloodwork came into question. I have had a bone marrow biopsy (VERY uncomfortable experience), transfused with platelets, infused with all kinds of expensive drugs, including chemo drugs and daily doses of 80mg of Prednisone (horrid stuff!), lost some of my hair, bruised, hospitalized and have spent countless hours in the Infusion Room at the TX CC with cancer patients (sometimes 4-6 hours at a time 3-4 days a week!)

The last resort was to have my spleen removed. Makes sense after what I wrote earlier right? The problem is that it doesn't work for everyone and it hasn't for me. I came down with Anaseptic Meningitis right before my surgery as a result of meds trying to "up" my platelet count going into surgery. After ruling out Bacterial Meningitis and seeing a Neurologist and having CAT scans and MRI's I had my surgery. I was hospitalized twice as long as normal because of complications and my recovery time took twice as long as well. I have been told that I have the distinction of being the Poster Child for the most difficult person to treat for ITP at the TX CC. Lucky me!

Having said ALL of that, I give thanks for my situation. It sounds crazy to some but through this experience I have come to experience the intimate, tender Father heart of God and feel His presence and love for me in ways I had never known existed. (I grew up w/o my real father and it deeply influenced the bad choices I made when I was young). The other thing this has done has made me develop more Christ-likeness. I am not perfect but I have grown deeper in love with Christ as a result of this time n the wilderness.

What do I do? I spend my time in prayer, reading the Word and PRAISING God for His incomprehensible love for me. Do I do this all the time? NOPE! Sometimes I rant & rave at God when I'm discouraged. The constant throughout all of it though, is dialog with God. He already knows how I feel so it's not like I'm keeping a secret! I recall His faithfulness and love for me as He has walked beside me my whole life-long, preserving and protecting me.

I honestly do not know how I would've gotten through the many years of my life if I didn't have the hope and peace that I have found in Him!


5:38 AM  
Anonymous Anonymous said...

when i'm in pain? if it's physical pain i honestly tend to curl up into a bitchy little ball like a wounded animal and lash out at anyone and everyone that comes near me.

when it's emotional pain (as it so often is)? i work with my hands. i knit, i crochet. i try to make something for someone else, embedding the few joyful and good thoughts i have into that item. it takes me out of myself for at least a few moments, gives me a new perspective.

6:18 AM  
Blogger BJ said...

My health issues are so very little compared with yours. And I will pray for you that you will receive the intervention that is needed. You have been through so much and stress plays hard on ones body and mind.
I love your jewelry and always come to look at your newest creation. You are so amazing. Please know that you and your family are thought about and prayed for. Feel better soon.

6:38 AM  
Anonymous Brian said...

I find that doing something mindless distracts me from the pain. I don't take pain medication because OTC has very little effect. I guess I just live with it because I am used to always hurting.

I try to write when the pain is low.

Love all the jewelry you have made. It's beautiful.

7:38 AM  
Blogger dee dee girl said...


Thank you, thank you, for the goregous necklace. I LOVE the colors and can't wait to wear it. It will surely get major usage. ;)

love you

8:23 AM  
Anonymous Anonymous said...

Hi Darlene, I love your jewelry.

I sure hope you get relief from the pain and the docs can find just the right "stuff" to make life pleasurable and comfortable for you and you can get into Stanford.

That was interesting to read as I didn't know that even a little increase in meds can make detox that much worse...

May blessings fill your life today and you find yourself pain-free.


10:07 AM  
Blogger turquoise cro said...

Phew! When I am in pain, I pray, pray, pray! That's what I will do for you too Sweet Darlene!!! Yes, my dad almost died going thru Detox last year! Praying in West Virginia for a sweet Ca. gal, xoxoxxoxo, Cinda

11:24 AM  
Blogger Karen "Kaa" Gordon said...

Mmmmmm! Your designs are sooooo yummy.

There is a bit of a bead addiction running through my family, both my mother and my aunt have opened up online bead stores, and make all kinds of jewelry. I do it too... but not quite as often, it is a dangerous addiction you know ;)


11:33 AM  
Blogger Georgia said...

Darlene.... I just realised my computer was logged in as my aunts profile... oops:) No, I am not a scary clown. :)


11:34 AM  
Blogger Becca said...

I have been so blessed never to have had to deal with chronic pain. My husband does, however, and has not learned a good distracting technique as yet.

Your jewelry is gorgeous! I've just started playing around with creating bead jewelry~it's great fun, and a really exciting new creative outlet for me. You've given me some new inspiration ;)

12:27 PM  
Blogger Gracey said...

Darlene, do you sell your jewelry???? I absolutely love should go into business. I would be your first customer guaranteed. Soooo beautiful!!

BTW, how is Mark doing???

3:59 PM  
Blogger Star said...

Migraines lead me to lie down in a darkened, quiet room. For other discomfort, I tend to knit (but I haven't done in for over a year).

Here's hoping that you are granted your wish for Stanford.

P.S. I love seeing all the pictures you've included in this post. Several remind me of when your sis posted pics of all the gifts she had received to promote fertility. You have the hands of an angel :D

4:12 PM  
Blogger Karen Travels said...

Hey sweetie, I haven't posted in a while, but I check in everyday. I need to order a necklace!! Something pink, I think. They all look so good.

I have been waking up in the middle of the night with my calf muscle so tight and cramped that I can't flex my ankle. It is terrifying...especially since I can't get out of bed when it happens. And it is dark and I am alone... So I breath through it, talk to the pain, and concentrate on pointing my toes up....eventually it goes away enough.

I find that drinking less soda helps with cramps like these, I guess because they are so dehydrating.

Hugs to you.

7:45 PM  
Blogger Kim G. said...

Lovely creations! I'll be praying for acceptance to the program at Stanford and that it will provide some relief. The pain I ever feel is so insignificant compared to what you and Mark have been through, however I do have some early signs of arthritis and a bad back that get to me now and then. I agree - it's best not to dwell too much on it. I like to stay busy and try to work through it rather than sit still.

10:56 PM  
Blogger Amber said...

I have been drugged up and sleeping for most of the last week and a half, and I hate it! Today and yesterday I only took a pain med in late afternoon, when I really had had had to. I just need to take it easy, and then I don't hurt as much or need the meds as much.

But mine is not a chronic pain, like you deal with. It only makes me understand how nice it is to be pain-free.

I hope you can be helped! I hate to think you are in pain at all.

By the way, I wore the PRETTIEST, most lovely necklace today...


11:16 PM  
Anonymous suzie q said...

I can't add any suggestions about the pain, Darlene. I just moan a lot and snap at people! ;) Laughing is good, if you can find something to make you laugh. What tickles you, Dars?
Your jewelry is so very very beautiful, sweetheart. You inspire me to want to have a go myself..
Stay strong, and know that we are praying the pain away..
Big Hugs,
Suze xXx

2:15 AM  
Blogger daisies said...

your jewelry is gorgeous and what a positive and creative way to deal with pain ...

i am blessed in that there are no physical pains that i experience other than my asthma and medication has that under control ...


8:15 AM  
Anonymous Anonymous said...

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10:20 PM  

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