Highs -n- Lows Living with the Disease

Changes in my skin...face, neck and chest...

Highs -n- Lows Living with the Disease

Sunday, March 31st

Happy Easter! 

God says "I Am"
God is our strength and hope for the future in the midst of our circumstances...be confident in who you are in Him...

Remind yourself everyday:

I am excited about my future
I am excited about what today will bring
I am excited about the new people I will meet
I am beautiful
I am grateful
I am talented
I am healthy
I am creative
I am happy
I am confident in who I am

The clouds will clear and the Son will shine...

Another great day!

Highs -n- Lows Living with the Disease

Saturday, March 30th

My knees, ankles, arms and wrists started to crack...boy it makes me sound so old, doesn't it :-) My skin is thinning and easily bruises...scalp itches...my hands, feet and legs tingle...I also get tested for cancer often...

What's worse...the side effects from the medication or the disease...I was told
I would only have 3 to 5 years to live if I wasn't treated...knowing that...I'll put up with the side effects anytime...

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It's spring...
One of the things I love about spring is the new life seen everywhere...not yet but it will...just wait :-)...there's something about it that is so encouraging...where the landscape seems dead and incapable of change or new growth, it begins to come alive...it shows me that just because we don't perceive something happening in our difficult circumstances doesn't mean all hope is lost...it's not..experience the transforming power of our Savior...Amen

Another great day!

Highs -n- Lows Living with the Disease

Friday, March 29th

I'm sitting here this morning as I always do...with my cup of coffee, waiting for my medicine to kick in. I also spend this time in the morning doing bible study and meditating.  Paul doesn't always get up as early as I do so I have this time with God. 

Today is Good Friday and as Jesus sacrificed his life for me...I too focus my life as a sacrifice for Christ...

We forget what the true reason for life is...it's not about the things in this world, its about the people...random acts of kindness, being there for those going through difficult times, listen to someone who needs a listening ear...

Make today a Great Day doing for others...pass it on...

Another great day!

Highs -n- Lows Living with the disease

Changes in my hands...

Highs -n- Lows Living with the Disease

Thursday, March 28th

This morning I woke up with shooting pains going down my right leg...the medication does help when it kicks in. I'm not sure how long this pain will go on...it's been close to a year already...One person said they've had their pain for over 5 years already...another over 2 years...I pray I don't have to put up with it for that long...

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Recently I've been struggling with the decision to go back to work...I'm used to keeping busy and I'm becoming restless....I've applied for a couple part-time positions...

I know with my diseases going back to work could be a bad idea...so I lift up my struggle to God...I pray He will open the door or close the door in the area He wants me to go...

I want to make sure I hear God's will so it would be nice if He could give me a loud blast or something I can't miss. :-) I will try to be still and listen to His will...

Another great day!

Highs -n- Lows Living with the Disease

Wednesday, March 27th

Today, I contacted the MDA office up in Edina...everyone was out for meetings...was hoping the process would go alittle faster...I'm disappointed I wasn't able to talk with my health care coordinator...

I wanted to get in to see the neurologist so he/she could let me know how things are going...will wait patiently for them to get back to me.

Another great day!

Highs -n- Lows Living with the Disease

Tuesday, March 26th

It is encouraging for me to know that my experiences are common experiences...the discomfort, weight gain and swelling, fatigue etc. etc.

With each day comes another challenge - The worse thing is when some people don't recognise you due to the weight gain and they say "Oh I didn't recognise you" and you make some comment about having a Prednisone face and body to try and cover up the guilt of puting on so much weight...our society is so focused on being thin and being beautiful or attractive...so sad...

I have experienced a drastic alteration to my body over the last year since my diagnosis and being put on prednisone...I've gained around 20/25 lbs, mostly in my mid-section...I can not wear many of my pants/jeans because of the weight gain and I am wearing larger, loose-fitting tops to try to cover up...

I continue to remind myself that beauty is internal not external and that external stuff is temporary and passes away...

Another great day!

Highs -n- Lows Living with the Disease

Monday, March 25th

I had a great time this weekend talking to good friend about old times and getting updated on current issues...so many changes for some of us...

We also spent a lot of time laughing, laughing so hard we were crying...it's been awhile since we've done so much laughing, it felt good....we decided we needed to get together more often...

They say laughter is the best medicine...so having a good chuckle can strengthen the immune system, boost energy, reduces pain and wards off the ill effects of stress...

I may not want my immune system to be strengthened because of the DM and Lupus but I could use an energy booster or pain reducer...

Another great day!

Highs -n- Lows Living with the Disease

Sunday, March 24th
 
Had a great weekend with 5 good friends from school...they have always been wonderful support through good times and bad...True Friends...
 
Another great day!

Highs -n- Lows Living with the Disease

Saturday, March 23rd

Another long day on the road...I
Keep up the positive attitude!! Life is what we make it and I choose to be happy, despite having my issues...

If I'm having a bad day or week, I have made a concious effort to stay positive, even though I have flared in that time, a good outlook is a huge help to your overall health.

I don't feel sorry for myself... If anything, I feel blessed for those things I CAN do on the Days I can. I've also learned that when I'm not up to par, a game on Facebook, watching some of my favorite shows, reading a few verses in the bible can help, I consider that productivity when It's all I can do for whatever reason I'm down.

I have been working on finding hobbies to keep me busy, most of which are designed for when my body allows...No doubt, nutrition is important, no matter what your health is...but I don't think its going to cure DM or Lupus...

Another great day!

Highs -n- Lows Living with the Disease

Friday, March 22nd

Another great day!

Highs -n- Lows Living with the Disease

Thursday, March 21th

Today, I've been taking it easy...staying out of the uv light as much as I can but I continue to notice around 2:30/3pm everyday my symptoms increased...my hands swell, I have inflammation and my head is really itchy and irritated...                                                  .                     --------------------------------------

I continue to go with the flow of life by accepting my circumstances...whenever I find myself feeling fearful about the future, I take a deep breath to bring myself back to where I am now...living in today...

It is important for each of us to just "be" in this life, and not to always think we have to "do" in order to feel worthy...

So my request for you today is to live life at a slower pace...just "be" in life...

Another great day!

Highs -n- Lows Living with the Disease

Wednesday, March 20th

Today, I spent a lot of time outside...my right side is pretty sore to the touch...the neuropathy kicked in big time, my face feels puffy and my head is very itchy and irritated...

Had trouble swallowing this evening...it wasn't my first time and it won't be my last I'm sure...
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I was diagnosed with Lupus and Dermatomyositis in 2012, and my life has changed in so many dramatic ways since my diagnosis. It has taken me almost a year to see life from a very slow and deliberate perspective. There are only about 5 in a million people in the USA who are diagnosed with Dermatomyositis (DM). I continue to try to live within the realm of a difficult situation with a symptomatic lifetime disease...

To me, the beauty of embracing a situation which has no immediate solution is to deeply appreciate even the simplest things that surround us each day...

As I have been able to build my bodys strength to lift my legs again, raise my arms to brush my hair, walk up the stairs without difficulty and even to be able to eat and swallow my food without as much difficulty are all miracles; all of these miracles have deepened my gratitude for the amazing creation of our bodies...

Another great day!

Highs -n- Lows Living with the Disease

Tuesday, March 19th

I had another good night sleep last night and a good day with family...

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I am saddened because of the changes taking place with my memory...I have noticed a lot more memory problems...seems like it's getting worse...happening more often...again I'm not sure if it's my medicine or something else...

Still waiting for my neurology appointment...it takes so long...

I have also noticed weakening in my knees...hard to explain...the strength isn't there...hopefully its a symptom that will pass...

I could do so much more physically and mentally...I will take all these changes in stride with Gods help...

Another great day!

Highs and Lows Living with the Disease

Monday, March 18th

I slept really good last night...so thankful...

Another great day!

Highs -n- Lows Living with the Disease

Sunday, March 17th

Shooting pains on my right side this morning...tossed and turned again last night...very sensitive when the sheets touched...not sure why...I thought we finally had it under control...

I also had drainage from my eyes again this morning...haven't had the drainage for months...maybe I'm having another step back...

Taking it easy this morning...waiting for my medicine to kick in...

Another great day!

Highs -n- Lows Living with the Disease

Saturday, March 16th

Last night we stopped in Blackwell, OK
and stayed at the Econo Lodge.
I had trouble sleeping on their hard mattress...I tossed and turned all night.

We made it to Edmond around 11:30am...enjoying our time with the kids and grandkids...

Another great day!
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At times, in my pain, I have gone to God with a sigh of relief, God says, "I've been waiting for you to come to Me in your brokenness. Here, let Me heal you. You need My help; for without Me, you can do nothing."

Highs -n- Lows Living with the Disease

Friday, March 15th

Well, we are on our way to Oklahoma, spent a long day on the road...over 600 miles...I didn't do much walking and I can really feel it...very bloated and sore...
Tomorrow we only have a couple hours left to drive...we are looking forward to see the kids and grandkids...

Oh, don't want to forget to mention...we are also looking forward to their beautiful weather...sounds like temps will be in the 60's...

Another great day!

Highs -n- Lows Living with the Disease

Thursday, March 14th

Another Great Day!

Highs -n- Lows Living with the Disease

Wednesday, March 13th

The sores in my mouth have healed without calling the Dr...so grateful...

Another great day!

Highs -n- Lows Living with the Disease

Tuesday, March 12th

Reviewing the different medical definitions and articles I've read on DM...I noticed that one article says DM is not painful and in another article It said it was painful...I can truly say the swelling or pressure of the inflammation can be painful, the shingles, neuropathy and bursitis are painful but the changes taking place in my hands or feet aren't painful...you can feel something changing but it doesn't really hurt...

When I was first struggling with the onset of DM...my hands and feet would freeze or lock up...I wasn't able to move them until the muscle released it...

The pressure I have been experiencing lately, on my right foot, is close to that feeling I experienced before when they locked up but not to the extreme I had when I was first diagnosed...

My Dr is having me tapper the prednisone...I was at 20mg and now I am at 17.5mg...she told me...I may see three steps forward and one/two steps back...that is normal to experience with the tapering...so maybe the feeling taking place in my right leg/foot are part of the tappering process...a step back...

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General symptoms of chronic inflammatory myopathy include slow but progressive muscle weakness that starts in the proximal muscles, those muscles closest to the trunk of the body.  Inflammation damages the muscle fibers, causing weakness, and may affect the arteries and blood vessels that run through the muscles. Other symptoms include fatigue after walking or standing, tripping or falling, and difficulty swallowing or breathing. Some individuals may have slight muscle pain...

We never know where life leads...

Another great day!

Highs -n- Lows Living with the Disease

Monday, March 11th

As the right side pain is decreasing/becoming more manageable...only hurts when I move now...I have also been noticing other feelings in my leg and foot...something I haven't felt before...it feels like my muscle tightening or shrinking...I feel it in my right foot the most...a pressure on my foot by my big toe...I know that sounds strange...
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As I share my journey...I am not focusing on the negative...I am coming more intune with my body...God's temple...

I look back at my life and remember times l lived with total and complete peace...I realize it was during my time of growth through bible study and meditation...it helps release the stress and takes me to our source...our source is God...God gives us peace that passes all understanding...He tells us to "Be Still and Know I Am Your God"...

Meditation creates abundance...it opens us up to opportunities...remember to let God handle the details...there is nothing that we will need or want...He provides all things...

Another great day!

Highs -n- Lows Living with the Disease

Sunday, March 10th

The time changing overnight threw me off course this morning...rushed to get ready for church in 20 minutes...it's not easy for me anymore...my pain medication hadn't kick in before church so I was limping around...

My pain is more manageable than before...I am no longer using my pain patches at night...so thankful...

This morning I was also thinking back to something that took place on Friday...Paul and I were meeting up with my sister, Brenda and her husband, Curt in Rochester...We decided to go into Rochester early to stop to look at modular homes and pick up a few groceries...

While at Harmony Homes, I noticed a set of keys on the kitchen island in a home we were looking at..they looked like our keys...I don't remember putting them there, if I did...Paul usually puts the keys in his pocket when I give them to him before we get out of the car...not sure how it happened but it was really scary to realize I may be losing my mind...this wasn't the first time I've done something like this...probably won't be my last...

Is it the medication I'm on or is it something else...I'm looking forward to my neurologist appointment...hopefully he will have some answers for me...

Another great day!

Highs -n- Lows Living with the Disease

Saturday, March 9th

I slept real good last night...the pain on my right side is finally becoming manageable...I have tingling in my legs and a feeling of cold spots in my thighs...

Yesterday, I got sores in my mouth...will need to take extra care of those... hopefully they heal without calling the Dr...

Another great day!

Highs -n- Lows Living with the Disease

Friday, March 8th

I joined a couple of online support groups for those with autoimmune disorders and DM...it's nice to be able to connect with others dealing with the same conditions as I...the groups provide a lot of new ideas, information and support...

Another great day!

Highs -n- Lows Living with the Disease

Thursday, March 8th

Well, I slept last night without the pain patches...but I've had a lot of pain this afternoon...

Spent my day researching foods that cause inflammation...hoping if I change my diet I could decrease the number of pills I take...

I also thought if I'd decrease my calories it would help me lose weight...I found a few new recipes we are going to try out...will let you know how it works out...

Another great day!

Highs -n- Lows Living with the Disease

Wednesday, March 6th

Well, I used my last pain patch last night...I thought I would see how it goes without them for a few days...if I can't stand it...I will call the pharmacy and reorder them again...

Another great day!

Highs -n- Lows Living with the Disease

Tuesday, March 5th

Being diagnosed with Lupus and then being told I have Dermamoyositis has really changed the way I live my life...I wasn't sure what it was I had or how I got it...

I was ready to live with Lupus...I have a couple of friends that have it so I knew alittle about it but I knew nothing about dermamoyositis...

I took grandma Gloria to the Dr in Faribault and while we were there...the nurse, Dr and I was started talking about DM...when the Dr heard what I had he asked me "why"...I wasn't sure what he meant...I didn't know why I got it...it is rare...

Later I learned that you could get it because of trauma or cancer...after a lot of tests...they didn't find any cancer but because of DM they continue to test my blood counts for cancer...I have a higher risk of getting it...
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My continued search for information...

The Link Between Lupus And Myositis

Lupus causes chronic inflammation in the body. While lupus can create a feeling of overall fatigue, myositis occurs when the inflammation specifically targets the muscles. While this condition typically does not cause any pain, it leads to muscle weakness...

Another great day!

Highs -n- Lows Living with the Disease

Monday, March 3rd

I am so frustrated with the side effects of the steroids I'm taking...I take 3 different kinds...I'm gaining weight, facial swelling, sweating and diabetes....who knows what else they are doing...

They did slow down the symptoms of the disease...so thankful for that...

There are pros and cons to all medicine...

There is no cure for myositis. However, prompt and aggressive treatment may reduce muscle inflammation and prevent muscle weakness from progressing. Because of the many different kinds of symptoms and a wide range of reactions to different drugs, each person's treatment for myositis should be individualized...

Drugs that are used for treatment include corticosteroids, such as prednisone, to reduce inflammation and improve the body's reaction to infections. Corticosteroids may produce a number of side effects, such as weight gain, difficulties in fighting infections, psychiatric changes, sleeping troubles, water retention, bone thinning, facial swelling, diabetes, and cataracts...

Corticosteroid therapy usually leads to improvement in myositis symptoms within two to three months, after which the dose can be lowered to avoid the side effects. If the dose of corticosteriods is going to be reduced, it is essential to lower the dose over a period of time.  Immunosuppressant drugs are used to slow down the immune system's attack on healthy tissue and improve skin rashes...

Another great day!

Highs -n- Lows Living with the Disease

Sunday, March 3rd

EXERCISES FOR DM

RANGE OF MOTION
Moving your limbs through a full range of motion will help to keep muscles stretched and toned. Depending on your condition, you can do range of motion a few different ways. Passive range of motion is when someone else moves your body for you. Active assisted range of motion is where you move as much as possible and someone else finishes the movement for you. Active range of motion is where you move completely on your own...

STRETCHING
According to Drugs.com, stretching exercises in your arms and legs can help prevent contractures from forming. A contracture is when a muscle that has been shortened makes it difficult for a joint to move. Begin any exercise session with gentle stretches for your biceps, triceps, quadriceps and hamstrings as prescribed by your physical therapist. It is wise to hold various stretches for 20 to 30 seconds and refrain from bouncing...

HYDROTHERAPY
Exercising in the water helps reduce the effect of gravity and may be helpful if you are in pain. Hydrotherapy exercises may be prescribed by your physiotherapist as part of treatment, says Drugs.com. Hydrotherapy may consist of walking, jogging or stretching in a pool, or the use of whirlpool baths to help soothe sore muscles...

STRENGTHENING
During periods when your pain is at a minimum and function returns, it is wise to perform light strengthening exercises to help manage your . The Hospital for Special Surgery suggests using resistance bands or light weights to gently work your muscles. Avoid performing any strength training without the guidance and supervision of your doctor or therapiest...

Another great day!

Highs -n-Lows Living with the Disease

Saturday, March 2nd

Well, I decided I was going to set a routine to do stretches and other low impact exercises, walk and swim at the pool at hotel in Wabasha...I was going to try and get back on track if possible...not sure what I was thinking...I found out my body is not the same, my muscles ache and bones crack...I only did a few stretches with the Yoga tape and I hurt...really hurt..I had to lay down and rest while I recovered...even the little steps I'm trying to take are difficult...maybe it was just that day...I will try again...

I am at the moment trying to live with the symptoms but confess still have days that I swell and itch alot...I never know when I'm going to have a really bad day or why these days occur. I follow my doctors advice and continue to take the medication ( a ritual now in the morning, noon and night).

I try to take pleasure out of the simple things in life...so many...

Another great day!

Highs -n- Lows Living with the Disease

Friday, March 1st

It's so disappointing when I see the mistakes I make when I do these blogs or other things...I loose track of time because I'm at home most the time and my mind doesn't alway work right...I'm not sure if it's because of the medication and/or the disease...I was told that my brain could be affected also...

Another great day!