Highs -n- Lows Living with the Disease

Monday, December 31st

Just got off the phone with the nurse...they are making changes to my medication again to get things under control...

It would be nice to get back to normal...whatever normal is...

Highs -n- Lows Living with the Disease

Sunday, December 30th

Today, I was taking it easy...don't feel well...caught a cold and was up alot last night...running a slight temp...hoping to get over it quickly...

My left eyelid is twitching again...Paul says the blood vessel is popped out causing my eyelid to sag alittle...

In alot of pain...wish it would just go away...I'm tired of the shingles pain...it's around most the time...some days are worse than others...today is one of those days when it's worse...

Looking forward to another great day...tomorrow...

Highs -n- Lows Living with the Disease

Friday, December 28th

Today I started cleaning up after our kids and grandkids left...taking down Christmas decorations.  I store the decorations upstairs so I  made several trips upstairs but got winded after 4 trips...I don't have the strength like I used to...

I also sweat much easier...I've noticed it happens several times a day...after taking my medication...I can be just sitting in a chair and I will start sweating.  The Dr told me that some of my medication could cause this...

Looking forward to another great day...

Highs -n- Lows Living with the Disease

Wednesday, December 26th

I'm having a tough evening...my hands and legs are sore and swollen.  I"m having trouble with my scalp...very itchy.  I have a few sores...not sure what I'm doing different today that may be causing these symptoms...

Looking forward to another great day tomorrow...

Highs -n- Lows Living with the Disease

I woke up feeling alot better than yesterday...not having any problems with my left eye, no head ache...so glad...

Looking forward to having all the kids and grandkids together tonight...

Faith is my way to Wellness...another great day!

Highs -n- Lows Living with the Disease

Sunday, December 23rd

Today I'm having trouble with my left eye...I have a head ache behind it, the blood vessel has popped out
and the nerve keeps twitching...painful...

Not sure why...We have company so we have more lights on than normal which may be playing a role in my problem...not sure...

Trying to understand the changes taking place...

I open my mind and heart to new understanding...

Highs -n- Lows Living with the Disease

Saturday, December 22nd

I'm looking forward to a trip to Kentucky next week to visit my nephew and his family...

I will be packing additional items that I wouldn't have needed before my diagnosis...I will be packing hats, scarves and gloves to match my clothes or coat...the gloves cover the redness and swelling in my hands, the hats covers the hair thinning or loss and the scarves cover the redness on my neck and chest...I also use the hats, gloves and scarves to keep myself protected from UV and inside lighting...I won't let these changes interfere with my joy...

I am open and receptive to all of life's changes.

Highs -n- Lows Living with the Disease

Thursday, December 20th

From the beginning of my diagnosis I've had problems with sores on my scalp, itching, hair thinning and hair loss.  Some of the medication I take also have the same side effects as the disease...the hair loss and thinning...

Because I have these issues with my scalp and hair...I won't be coloring it anymore...hard to accept...I've been doing if for as long as I can remember...

This last week I broke down and ordered a couple wigs...I will see how they look and how well they fit...it will take some time getting used to...

Had another great day!

Highs -n- Lows Living with the Disease

Some changes taking place with my hands...

Highs -n- Lows Living with the Disease

Tuesday, December 18th

Today, my granddaughter, Kaylee and I went to visit the Grandmas in Faribault...

After returning home...I decided to put on my comfortable clothes...while changing I noticed several bruises on my arms and legs...

I've had bruises before...when I first noticed the bruises I asked my Dr about them...she told me that this is a symptom of the DM...The cells attack the small blood vessels that supply my muscles and skin...the blood vessels breaking causes the bruising...

Everyday is a great day!

Highs -n- Lows Living with the Disease

Sundays, December 16th

When I wake up in the morning I  have a mattery discharge coming from my eyes...not sure if its a symptom of the disease or a side effect from the medication I take.

Last Sunday the discharge lasted longer than usual...I had to continue to wipe my eyes in church...it can be very embarrassing...I know I shouldn't care what others think but being human, I wonder...

Today I am enjoying another beautiful day....

Highs -n- Lows Living with the Disease

Friday, December 14th

Before starting my medications and in the search to find out why I had gotton the DM...I had a complete checkup...blood work, tests for all types of cancer, pulmonary tests, and an eye checkup...the doctors didn't find any cause.

I wouldn't be honest if I said I didn't question...why me??? It's such a rare disease...where did it come from? And yes why was I the chosen one to be effected by it?

In the early stages of the disease I had symptoms that gave me alot of trouble...my scalp, hands, feet, chest and muscles...

I had fallen several time, lost hair, my hands and feet would lock up and I was scratching so much I would bleed...the UV lights and the inside lights would irritate my skin...

My Drs instructions were to stay out of the light and when I go out stay covered....

Today I will enjoy another beautiful day....

Highs -n- Lows living with the Disease

Wednesday, December 12th...

 

This morning I woke up again with pain on my right side...having trouble with the shingles still.  The onset of the shingles was July 31st...it has jumped 4 times...the pain medication doesn't seem to be helping anymore so my Dr has increased the medication...hoping to help ease the pain...if I can tolerate the increase. 

 

Taking the immune suppressing medication opens me up to alot of different illnesses...I have had the flu once a month, October and November...Monday I woke up feeling ill but I wasn't sure if it was a flu bug or the increase in medication???  I ended up sleeping alot that day...

 

I continue to appreciate everyday...