Tuesday, June 28, 2016

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.

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.

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.

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.

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!

Thursday, May 26, 2016

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!

Saturday, September 12, 2015

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

Saturday, July 11, 2015

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!