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!

Highs -n- Lows Living with the Disease

Another Beautiful Day! 

To understand my story you'll need to understand the daily obstacle course a person with DM, Muscular Dystrophy,  faces due to weak legs, poor grip function, light sensitivity, swelling and pain. Simple things that everybody takes for granted have turned into challenges that need to be conquered, modified or simply given up as losses.

THE THINGS I MISS:
Walks in the woods or at the beach. Swimming in the ocean or in a pool. Running up a flight of stairs. Going for a brisk walk. Going on trips or visiting friends without having to think about pain, accessibility of location and lighting. Wearing nice fitting pants versus the loose fitting pull up pants. Wearing shorts and tank tops.  Wearing shoes with heels or sexy sandals. Regular gardening, raking, or simply pulling up a weed. Doing laundry, vacuum, cleaning and sweeping without pain or fatigue  Walking while looking at the stars. Just simply moving about without having to think about how to do it safely.

So many simple things I can no longer do or have to work twice or three times as hard to be still doing them. My energy expense account gets way overdrawn on a daily basis, and I have had to learn to slow down, prioritize, pace myself. I need to listen and respect my body signals and yet not be trapped by feelings of guilt about them.

THE BEGINNING
My first diagnosis was Lupus in March 2012. After a muscle biopsy at the University of Minnesota in July 2012 I was given a new diagnosis of DM/Myositis. At that time I was not aware that there are different forms of Myositis, each with their own distinctive features and approach to treatment. My diagnosis then was Lupus and DM/Myositis and I was given the usual approach of treatment with Prednisone. Methotrexate was added to that later. These are aggressive medications with ugly side effects when you take them longterm.  After taking the high doses of steroids I got a really bad case Shingle, jumping 4 times. 

I began having my first unexplained falls in 2011 walking up a hill from my car to the house, thinking I was just clumsy. I had trouble lifting my legs up on a footstool and lifting my arms were painful.  I had bad rashes on my chest, arms and legs.  I had puffy eyes and white cuticles.

LIVING WITH DM
When I am unable to sleep I use a reclining lift chair.  I have grab bars for the bathtub. In 2015 when it was clear that I could no longer manage steps or stairs very well. 

In the last six months it has become more apparent that my mobility has become more difficult. My legs feel like weights are attached and some days they just don’t want to move.  By the end of the day I need to lay down in bed with my feet up to help relieve the pain.

I broke my right foot 3 weeks ago and have been using a boot to help with the healing.  The doctor told me that the medication I'm on causes brittle bones so it doesn't take much to injury myself. The book is causing my back to hurt because of the uneven balance using it.

I can no longer walk through stores without the assistance of the grocery cart.  I walk as much as I can as often as I can.  I'm trying to stay as independent as long as possible and to keep the circulation in my legs.  My legs and feet are turning purple. Some days walking is not an option due to swelling and extreme pain.  A scooter looms in the future. What I lack in physical mobility I have to constantly make up with mental gymnastics, every move I make requires me to be mentally focused on.

IN CONCLUSION
When you have to fight your daily battles with DM (Dermatomyositis) there is no chance of a furlough, leave or truce. It is ongoing, relentless and progressive. It is truly mentally and physically exhausting. You absolutely depend on having a good support system through family and friends. They have to share this disease with you whether you like it or not. It is a learning process for them too and a harsh reality. I have learned that it is O.K. to have down times. I save clippings, quotes and relevant poetry to help during those downtimes when you have to try your best to control your thoughts and avoid anything that may have a negative influence.

Have a Blessed Day!

Highs and Lows Living with the Disease

Good Afternoon!
Another Beautiful Day! 

This morning I woke up to the sound of a thunderstorm.  We needed the rain.  It's been so dry lately, the ground has started to crack.  It cleared up this afternoon and now the sun is shining and the birds are singing. 

I fractured my right foot when moving the furniture, during spring cleaning, 2 weeks ago.  I'm not sure how it happened or when it happened.  I was on a role and I wanted to get the house clean.  :-)  Now I'm in a boot for a few weeks.

I had a few appointments with the dermatologist to check some spots on my face.  One was a precancerous spot so they took it off.  I go in every 9 months to watch for changes to my skin.

I've been experiencing alot of changes to my body since the DM diagnosis. I have alot of tingling going down both legs and my legs are getting heavier, my bones are hurting alot more, expecially when the weather is changing.  Being able to do things is getting tougher.  It's really hard some days :-(  I have a tough time walking very far without assistance.  I us store carts when in stores and wheel chairs in the clinic.  I don't go very far.  I have been swelling alot also.

I've also been trying to get rid of some of the medication I'm on...I don't like the way it makes me feel or how it changes my mind.  I've had brain fog or forgetfulness for awhile.  I hate that the most.  I go in for some test in July. 

I am so thankful for all I can do and I'm enjoying every day to the fullest!

God's Peace to you!

Highs and Lows Living with the Disease

Another Beautiful Day!  This weekend we are up north with family...
Enjoying the weather and time together.  It's a beautiful day!   Temperatures are in the high 60's.  Perfect temperature for being outside!  I  haven't been out much but it is a perfect day...

The last several months I've been trying new natural remedies to help me with the diseases and symptoms.  My goal is to get off the pharmaceutical medication and only use natural remedies.  I am sick of all the medication... I know I need them to keep the muscles from deteriorating and the diseases from progressing.

I have been swelling alot and I am having trouble with my left arm...I can feel my muscles deteriorating...it can be painful.
I am having tingling in both legs and my right arm.

I get spells where I can't find the right words or it takes time for my thoughts to get from my brain to my mouth.  It's frustrating...

I will always be thankful for all I can do.  I appreciate each moment of each day.
I will continue to stay positive and enjoy my time with family and friends.  

So very thankful for all I can do!  I am Blessed

Highs - n - Lows Living with the Disease

Another Beautiful Morning!   So many things to be thankful for...

It's been awhile since I've posted last.  I've been trying to keep focused on the positive side of life...
I've been enjoying the grandkids and I  continue to clean and decorate the house. It can be a full time job. I'm so very thankful that I can do it.

I woke up this morning at 4:30am with a really bad headache...I'm trying to get rid of it but it taking awhile...

The DM and Lupus are causing changes in my life but I will not let them get me down or run my life.  I enjoy everyday the best I can under the circumstances I'm in. 

I'm trying to keep as active as I can.  I do wish I could do more but until then I will be content with where I am.  I continue to study the bible and I want to get back into my old routine of meditation and yoga also but I have trouble staying focused. 
It's the combination of both the medication and the diseases.  I've also been having trouble with my right foot. The bone is inflamed.  I'm not getting around like I used to.  Alot slower these days. :-(

I am so grateful for all that I can do and I will continue to stay grateful for all life has to offer. So Much...

Keep your head up and your eyes on Jesus... :-)

Thank you Lord for being there for me and for providing for my every need.  Continue to show me Your grace. Thank you for providing me strength and Your peace as I travel on my daily journey.  Take away all the pain and light sensitively.  Some days it can be tough...really tough. Guard me from all negativity. Amen and Amen!