Highs -n- Lows Living with the Disease

Thursday, January 31st

We woke up to a beautiful day...34 degrees this morning...the highs were 68 degrees...I really love the weather in AZ this time of year...

My face, ear lobes, chest, hands and arm are getting red...more exposure to the uv and florescent than at home ...I've been spending more time outside in the shade...wasn't sure how I would do since I've started taking the medication...the light still does affect my skin...really sad...I want to enjoy the beautiful weather...

Another great day!

Highs -n- Lows Living with the Disease

Wednesday, January 30th

This morning when getting out of bed and stepping onto the floor both feet felt like stepping on pins...It went away after a few minutes...

I've been spending time outside today...my hands, feet and legs are swollen...head has been itching a lot also...

Another great day!

Highs -n- Lows Living with the Disease

Tuesday, January 29th

We stayed in a hotel in the Cities last night so we didn't have to rush this morning to get to our flight...so glad we did it...sounds like the roads were worse this morning at home.

Taking our yearly trip to Tucson, AZ...we usually go down for the Gem show and to spend time with Tim and Connie...it will be so different this year...we usually stay with Sue, Connie's mom, but she died after our visit last year...will miss visiting with her...

Didn't take my medicine on time today, so alittle sore and itching today...will get back on track tomorrow...

Another great day!

Highs -n- Lows Living with the Disease

Monday, January 28th

Had a busy day getting ready for our trip...picked up my medicine so I had what I needed while we are gone...spent $660.00 for all the medicine...the pain patches being the most expensive at $500.00...if the neuropathy wasn't so painful I wouldn't need them...

I pray the neuropathy, bursitis, shingles and DM would heal up so I didn't have to deal with them anymore...Amen!

Another great day!

Highs -n- Lows Living with the Disease

Sunday, January 27th

Last night we learned of the death of our neighbor...so sad...when we hear about things like this it wakes us up and makes you think about life...

Today, I am going to begin to see things differently...I have DM and I am enduring the symptoms that goes along with the disease and complications...

Starting today I am going to live...I don't want to be sheltered away from everyone.. somethings I have no control over.  I will appreciate what I can do and continue to look for other things to enjoy...

Another great day!

Highs -n- Lows Living with the Disease

Saturday, January 26th

Took a drive to Faribault this morning with Christine and Kaylee to pick up Grandma Faye...we are getting ready for our trip to AZ...I'm looking forward to seeing my brother and his wife...only see them once a year...

Sounds like the locked unit were Granda Gloria lives won't be ready for another two weeks after the main break...not very good...Grandma Gloria is adjusting well to her new temporary surroundings...she really loves to see Kaylee...the highlight of her day...
Grandma Glorias legs are also finally healing after starting antibiotics...won't need to see the Dr until after I return...so thankful...

I thought moving the grandma's into Milestone would give me a break from caring for them but I am finding out it doesn't end...

Having a good day...again woke up with a lot of pain in my right leg, hip and back but after taking my morning medication...the pain lessens...so glad the medicine helps...

Another great day..

Highs -n- Lows Living with the Disease

Friday, January 25th

One of the medication I am on is prednisone...I started at a higher dose of 60mg and then eventually got tapered down to 20mg...my Dr wants to eventually get me off it but until they can find a combination of medicine to keep the symptoms under control I will continue to take it...

I can feel the difference with the prednisone...It allows me the relief to live a somewhat normal life :-)

I am having a quiet afternoon...decided to just take it easy...Another great day!

Highs -n- Lows Living with the Disease

Thursday, January 24th

I had a good night sleep last night and a much better morning than yesterday...one thing I have noticed with DM...you never know what you will wake up to or how your day will go...

This morning I watched the movie You Got Mail...love that movie...it reminded me of our internet trying to dial up a few years back...we could only get AOL...still today we don't have very many internet options...I currently use my phone...one minute I have internet and the next nothing at all...I could be in the middle of typing and then lose my connection...it can be frustrating...

I spent the rest of my morning doing laundry and cleaning...taking breaks when needed...

I picked up Kaylee from daycare at around 2:30pm...mom and dad work late today...

Kaylee started to walk around talking and moving both hands...we were trying to figure out why she started moving her hands while she talks.  Several months ago I started teaching her sign language...not sure if that's why or if she just does it...it is so cute whatever the reason...I enjoy having her come over...it helps my days pass and she does the cutest things...

Today is another cold day...I really hate this cold weather...looking forward to our trip to AZ... :-)

Another great day!

Highs -n- Lows Living with the Disease

Wednesday, January 23rd

I had a great day with Christine and Kaylee...
The residents always have a great time watching Kaylee...its good to see them smile and talk to her...

Today my leg hurt most of the day...put my pain patches on early to hopefully help with the pain...

I also have puffiness under my eyes and eye drainage...not sure why...

Have a good night...

Highs -n- Lows Living with the Disease

Wednesday, January 23rd

I woke up with shooting pains going down my right leg...got up and took my morning medication for a little relief...

Today, our plans, Christine, Kaylee and I, are to visit Grandma's in Faribault...we are eating lunch with Grandma Gloria...

At the home where grandma's live...they had a water main break so it was a busy day for employees...felt bad for them...they had to move all the patients from the locked unit over to the apartment side...sounds like it may take a week or maybe longer to get everything back together for residents to move back in...the water was ankle deep...

Grandma Gloria will be staying in Grandma Fayes apartment until cleanup is complete...I hope it goes well...

Another great day!

Highs -n- Lows Living with the Disease

Tuesday, January 22th

Brrrr...another cold day...hopefully this cold spell is short...it's way to cold for me...

I am looking forward to going to AZ...a week from today we fly down to Tucson...my first flight since I was diagnosed with DM and while on my immune suppressant medications...not sure how it will go...

On the flight I will wear my mask to protect myself from everything...its a tightly closed area...who knows what could be floating around...

Tucson, AZ is were my journey began...it will be a year...when I had my punch biopsy taken while visiting AZ...it brings back a lot of emotions...

The Dr told me I would be the expert on DM...I will need to read, ask questions and inform them what my needs are..

After reading online and looking at the pictures...I begin to realize that my journey really may have started a year or so earlier...
While at work...many times I would get these striped like marks and then they would disappear... I would tell staff to watch how these marks would come and go on my arms, legs, cheek, neck...It was very unusual...I didn't realize at the time what these marks meant...
The only other symptom I had at that time was the red patches on my chest...

Now my symptoms include changes in my hands, face, neck, chest, scalp, elbows, knees, I had muscle loss, and strength loss...
 Right hand

 Left hand

 Changes in my face

Highs -n- Lows Living with the Disease

Monday, January 21st

Happy MLK Day!

What a morning...so cold,  -7 currently...it hasn't been this cold in 4 years I was told...a great day to stay inside...

I've been thinking about my morning routine...I get up, use the restroom, take off my pain patches, take my medication, put a pot of coffee on, eat breakfast and watch the news...not usually much on for good news...

If someone has the money to start up a new news station....make it a station that shows the good things going on in the world...I know there is a lot of great stories to share...about everyday people...

As day continues....I take medication 5 times during the  day...some of the medication I take for DM are Coticosteroids also known a steroids...don't confuse these medications with the steroids abused by athletes...

Corticosteroids help suppress the over active immune system that is fighting my own cells and organs...

Unfortunately these strong medications have side affects that can cause tissue damage and other infections...colds, flu, shingles, and other infections going around...I've already picked up most of these infections several times since I've been on these medications...

I also have to watch for open sores...the medication causes the healing to be delayed...I get sores in my mouth, on my scalp, and on my hands...I've been lucky they all seem to heal eventually...

Another Great Day!

Highs -n- Lows Living with the Disease

Sunday, January 20th

I think I am finally coming to grips with DM...I really don't want it, but I have to live with it...I kept struggling with how to dress to hide all the changes taking place...some changes cannot be hidden ...

I put UV makeup on my face to protect it from the light and to hide my chin and nose...they are the hardest to keep covered or hidden...they are both really red...

My hands are showing a lot of changes....

I continue to have an itchy scalp...

My strength is not like it use to be....I cannot get up from a kneeling position without assistance...I struggle opening doors...somedays I struggle buttoning or zipping my clothes...

I found information online that stated when I exercise that I should not expect to increase my muscle like ordinary people, but to just prevent further muscle deterioration...the reason my joints and tendens are suffering is that my muscles are not working properly and therefore putting extra work on the other parts...

When discussing the disease with my Dr she couldn't tell me that I wouldn't someday be in a wheelchair...she said each person responds so differently to treatment, but we would work towards that goal...

Today I will take it one day at a time...

Highs -n- Lows Living with the Disease

Saturday, January 19th

In my online search I found the definition of DM...It's the Inflammation of skin and underlying muscular tissue...

The cause or causes are unknown, I was told it was usually brought on by cancer or some type of trauma to my body...

Online it mentioned it could be a viral infection triggering the body's immune system to misidentify infected skin and muscle tissue as a threat...

It also characterized myositis as weakness of limbs and neck muscles and with much muscle pain and swelling accompanied by skin rash affecting cheeks, eyelids, neck, chest, and limbs...progression and severity vary among individuals...

My symptoms at the onset of the disease were weakness of my hips and thighs...I started to fall...I had extreme sensitivity to all lighting, UV and inside lighting...this is called photosensitivity (skin itching upon exposure to light) I had joint pain, hands and feet locking up, and shortness of breath...

My symptoms vary from day to day...I have to take three immune suppression medications to help control my symptoms...many of these medication are also used for cancer patients...

I enjoy every day...

Highs -n- Lows Living with the Disease

Friday, January 18th

I have been doing additional research...looking for new information on DM and Lupus...I thought I would stop at the MDA office in Tucson when I am there to see what kind of information and studies they may have...

Another Great Day!

Highs -n- Lows Living with the Disease

Thursday, January 17th

While getting ready today I noticed my left ear had the red patchy rash...same red patchy rash I have on my hands, face, neck, elbows and knees...

I'm not sure what brings it on and why it appears when it does...

Another Great Day!

Highs -n- Lows Living with the Disease

Wednesday, January 16th

At my last Dr appointment I was diagnosed with bursitis and neuropathy along with the post shingles pain...I continue to have pain and swelling in the area I had the shingles so I was given the pain patches to help ease some of the pain...the patches are helping :-)

Another Great Day!

Highs -n- Lows Living with the Disease

Tuesday, January 15th

I know I'm not supposed to be physically active until they find the best combination of medications to get symptoms under control but today I thought I'd take kaylee to the mall to walk...we had a good time...

I read an article in the AARP magazine that said to be healthy we should walk at least 10,000 steps a day and I have not been walking alot at all...I can tell...

I need to keep myself from gaining to much weight...it will cause more complications in the long run...I really don't need additional problems...

Another great day!

Highs -n- Lows Living with the Disease

Monday, January 14th

This afternoon...after returning from Faribault...I stopped at our local post office to mail out a couple boxes...

I set the boxes on the counter to be weighed and my left hand locked up...I was so disappointed...it's been several weeks since my hands or feet locked up...so sad :-( I thought we finally found the combination of medication that worked best for me to control the DM...

I choose to live every day with joy and peace...

Highs -n- Lows Living with the Disease

Sunday, January 13th

During the short days of winter, you see less of the sun but the UV light still shines through the clouds...putting me at risk...

Even though I use UV makeup...my face has additional areas affected so I started wearing a mask ...this is an extra protection from UV or inside lighting, the cold and flu...

At times I feel disconnected from life, unable to go and do the things I use too...when I struggle with these feelings I shift my focus to the things I can do and be thankful for those...I trust the wisdom of God...

Another great day!

Highs -n- Lows Living with the Disease

Saturday, January 12th

I am tired and not feeling well today...hopefully it's nothing...I woke up alot last night...I have noticed changes taking place in my hands...

This afternoon I laid down for awhile...it helped... :-)

Another good day...

Highs -n- Lows Living with rhe Disease

Friday, January 11th

I thought I'd take the next few days to clean up the house and get everything put back...I took down all the Christmas decorations and put them in the extra bedroom until I decided to pull out all the empty boxes to put them away...

My back, shoulders and hand give me trouble...some days are better than others...I get tingling between my shoulder blades, my back hurts and my hands are losing muscle strength (it's hard to explain )...so I'll sit down and rest or repostion myself before going back to cleaning...

My Dr still doesn't want me to do too much physical activity until they can get the medication adjusted to help with my symptoms...they will get the medicine adjusted soon...

I love the feeling when the work gets done...Another Great Day!

Highs -n- Lows Living with the Disease

Thursday, January 10th

As I'm getting ready this morning I was thinking about what I should wear...I had short sleeve shirts/T-shirts I thought I could wear but if I wore short sleeve shirts I'll have to put something long sleeve over the top of it...for protection from the lights and to cover the patches of red I have on my elbows...

I have red blotchy patches on my elbows, knees, fingers, face, neck and chest...these patches of red continue to increase...these red blotchy patches are symptoms of the DM...

I appreciate everyday..

Highs -n- Lows Living with the Disease

Wednesday, January 9th

This morning I woke up again with mattered eyes and both eye's were bloodshot..time to get in for an eye appointment to make sure it's not anything serious...

When starting one of my medications...my doctor said it could effect my eyes so they had me go in for an eye appointment...a starting point to watch for changes...

Another great day!

Highs -n- Lows Living with the Disease

Tuesday, January 8th

After going to bed last night I had tingling in both legs and feet...

This morning I didn't wake up until 8am...wow, I must have been tired...
when I finally woke up I had alot of matter in both eyes, a headache behind my left eye and my left eye was twitching...really... what's going on??? After taking medicine symptoms went away...

Another great day!

Highs -n- Lows Living with the Disease

Monday, January 7th

A week or so ago I ordered a few wigs because of hair lose and hair  thinning...

I decided to try to wear a wig today, I got my hair tucked under and got it situated on my head...they need to put instructions in with them...I had no clue what I was doing...

We ran down to Winona to run errands...on our way down I was already having trouble with the wig moving...I put it back in place and it continued to move...it was so frustrating...I wasn't going to keep adjusting the wig so I took it off and put on a hat instead...lucky I decided to bring the hat along just in case it didn't work out...

I'll try it again another day...

Highs -n- Lows Living with the Disease

Sunday, January 6th

When I was diagnosed with dermatomyositis...I wasn't sure how much I would be able to do anymore...I enjoyed being around people and traveling.

We went to AZ every year and I had a cruise to the Caribbean planned
The Dr told me I couldn't go on the cruise because of the hypersensitivity to UV and inside lighting, and my symptoms weren't under control...it was frustrating...

I'm not going to let myself feel defeated...I will enjoy and accomplish new things in my life...

Highs -n- Lows Living with the Disease

Saturday, January 5th

My head was itching alot today...my husband, Paul told me I should shave my hair off my head so I could use the medicated cream on my scalp, to keep it from itching...

It's a good idea because my hair is so thin and dry anyway...I just have to learn how to use the wigs I purchased and get the nerve up to have it done...

If it doesn't work out...my hair should grow back...I think :-)

Highs -n- Lows Living with the Disease

Friday, January 4th

My journey with DM can be a daily challenge...not knowing what each day will bring.

My doctors told me to learn as much as I can about the disease...so I went online to search...I found several sites that could help me gain the knowledge I needed.  All of them had good information...

One particular site said many adults with DM at age 60 have cancer :-( this is not what I wanted to read..I try to keep as positive as possible.  It's hard enough struggling with the symptoms of DM, Lupus and Shingles...I really don't want anything else added to my plate now or then...

I will keep my head up and enjoy everyday...

Highs -n- Lows Living with the Disease

Thursday, January 3rd

Continued changes in my hands...

Highs -n- Lows Living with the Disease

Thursday, January 3rd

What a day...Kaylee and I went to visit Grandma's in Faribault...I thought I'd treat everyone to a milk shake from McDonalds...so before going to Milestone I picked up their surprise and we headed over...

After arriving I got Kaylee ready to go in...then I got the treats...I dropped them...I was so upset with myself...I lost only one...the others survived...my hands don't have the strength and they were swollen more than normal today...so frustrating...Kaylee looked at me...I just had to smile...she always brightens my day...

We ended up sharing the milk shakes that survived and enjoying every bit of it...

Another challenging day but a good day!

Highs -n- Lows Living with the Disease

Wednesday, January 2nd

Today I was moving a few plants from in front of our front door so we could have appliances delivered...I found out that I don't have the strength in my back anymore...I can move a few small pots and then needed to rest...

I am so thankful for what I can do!
Another Great Day!

Highs -n- Lows Living with the Disease

Tuesday, January 1st

Last night I put oil on my scalp and in my hair...they are both so dry...kept it in overnight...scalp is still pretty itchy...

I am still pretty sore...have been using the patches for the pain but I have them 12 hours on and 12 hours off...

I will get better soon :-)