Highs and Lows Living with the Disease

Another Beautiful Day!  
Today, I'm hoping to get the rest of the plants in before we have a hard freeze. I'm cleaning up the front porch so I can fit the rest of my plants in. 

The leds for the Spinal Cord Stimulator was taken out on Friday.  I found out that when they placed the stimulator, I ended up with 6 holes instead of the 2 holes as they search for the right area to place them...it took the Dr awhile.
The stimulator did a great job blocking the pain signals to the brain.  Before I left the Dr office, on Friday, I told them I was interested in the permanent stimulator.  But before I can have it placed the Dr wants me to get down to 5mg of prednisone.  Currently I'm at 10 mg.  So after we return from Oklahoma next week I will go down to 7.5mg and a week and a half later I go down to 6mg and a week later I will go down to 5mg.  It may be temporary but I will be down to the 5mg to help the healing process go better :-)  I will be out of commission for 8 weeks.  No bending, reaching, moving more than 30 degrees or lifting.  They want the scare tissue to form around the leds to hold them in place.  I  will have to carry a medical card at all times.  The remote control will the way I control the controller which is placed under my skin in a pocket on my back.
I'm having the stimulator placed on the 22nd of November.  If I have a flare before then I may need to go up instead of down on my prednisone and if that happens I will have to wait until I can get the prednisone down. 
I've also been experimenting with the gabapentin, the nerve pain medication.  I was told when talking with the pain Dr that I'm on a low dose of the pain medication so I have room if I want to go up to see if a higher dose of gabapentin will help.  So I thought I would see how upping the  medication helps.  I'm not sure which would be the best route to go...Please pray for me as I prepare for the surgery, if this is in God's plan. 

I am so thankful for all I can do...
Have a beautiful day!
God's Peace to you and your family!

Highs and Lows Living with the Disease

Another Beautiful Day!  
This morning we have the windows open...enjoying the fresh, crisp air...it's 59 degrees right now.  Today the temperature is supposed to be in the high 60's to lower 70's. Perfect weather!!!!

I have so many things to get done today ahead of the spinal cord stimulator surgery, tomorrow.  I won't be able to reach above my head, bend down, move more than 30 degrees and no heavy lifting.  I'm planning on sleeping in the chair or on the couch to prevent myself from pulling out the leds.  I can't drive with the stimulator on because there is a chance the stimulator may cause me to jerk the wheel.  Better to be safe than sorry...

My plan for today is to finish cleaning and getting the sheets back on the beds before company comes.  I should run and visit mom in Faribault but not sure if I will get over there yet. 

We have company coming on Tuesday and again on Saturday.  Kris is stopping out today...I may have him help me get the plants inside before the cold weather hits.

Next Saturday we have a wedding and the following week we are planning to go to Oklahoma to visit the kids and grandkids.

I am so thankful for all I can do...
I am Blessed!
God's Peace to you! 
Julie

Highs and Lows Living with the Disease

Another Beautiful Day! It hit 75 today...

After returning from our yearly trip from Arizona in late March I decided to stop taking oxycodone.  I didn't like how the oxycodone made me feel and I had been taking it for almost 4 years already.  It wasn't helping with the pain anymore and I didn't want to increase it.  The DM and the Postherpetic Neuralgia can be very painful so I decided I wanted to see a pain management Dr. to hopefully get the pain under control.
Before going to the pain Dr. I tried other things that I thought might help.  I went for physical therapy and for acupuncture but neither helped.  I think the acupuncture made the pain worse.  The pain Dr talked to me about using a spinal cord stimulator to lessen the pain.  Thursday morning I received two messages from the pain Dr's nurse.  One stating I was scheduled for surgery on Monday,  October 17th. The second asking me to call back so I can schedule a couple other appointments.  I called her back to set up a preop appointment, a postop appointment and an appointment on the Friday following surgery to see how the spinal cord stimulator trial worked.  They give it a week to see how the spinal cord stimulator works before they put the controller in a pocket under my skin.  Once it's under my skin I use a remote control to adjust it.  I will be  limited on what I can do for 6 to 8 weeks if I decide to do complete the stimulator implementation.  Friday morning while I was giving blood I received another message to let me know I was scheduled for a MRI on Monday, October 10th (this morning).  So this morning I ran to Gundersen in LaCrosse, WI at 6:15am for an 7:45am appointment. Tomorrow I run back to Gundersen for the preop and to get the results of the MRI. 

I was really surprised when they scheduled the appointment for the surgery for the Spinal Cord Stimulator trial already.  I don't know how I feel about it.  I'm alittle scared that my body may not heal properly or my body may reject the leds or controller. 
I've  been wondering if the cadaver skin and mesh used for the hernia surgery caused the Dermatomyositis and Lupus.
It is said that Dermatomyositis is brought on by trauma to your body or cancer.  They tested me for cancer and nothing was found at that time.

I am so thankful for all I can do...
God's Peace to you and your family!