June 20, 2017

KNOW THY MEDS!

Back on April 18, 2017, my blog post Made In The Shade!  was published.  The post was about a dermatological appointment,  the results of my biopsy, and most importantly the preventative measures that I should follow to prevent further sun damage to my skin.  At the time, it was explained to me that I was being treated for solar keratoses, as a result of long-term sun exposure.  I shared with my readers some of the preventative measures that were explained to me, and I now follow.

Well, here in Rhode Island we experienced torrential downpours all of Friday night and into Saturday morning. As soon as it cleared I headed to the beach with my dog, Sean Patrick.  Because it was gray and overcast I wore a sweater, but eventually removed it during the walk.  When I arrived home I realized I had a sunburn on my face, chest, and exposed arms.  For the life of me I couldn’t figure out how this could be, since I had only been out an hour, and it still had not completely cleared up.  I was confused on why this happened since I religiously apply SPF 30 on my face, arms, and hands each day.  Jeff suggested that I check all my medications, and see if any causes photosensitivity, and therefore may cause sunburn or rashes in a brief amount of time.  I researched my medication’s side-effects and realized that three of the many caused protosinsitivity.  Methotrexate, hydroxychloroquine, & my occasional ibuprofen were the culprits.  

I’d be lying if I didn’t say that treating RA stinks, at best!  But to learn and treat RA each day for over 3 years and still get stumped at what it throws at you, is a rollercoaster ride that I want off of!  We do what we can at the time the challenge is presented and hope the challenges decrease.  Even thought the weekend was a washout, I spent last Tuesday in Boston, hanging at the Pru and watching the B 52’s at Symphony Hall, it was wild!  

Have a great, pain free week!  

 

 

June 18, 2017

Happy Father’s Day!

Today I celebrate a father that gave me the greatest gift-himself!
xo Today & Always

June 13, 2017

DON’T JUDGE A BOOK BY ITS COVER!

I chose to live my life downplaying anything that considerably limits any of life’s activities. Living with a chronic illness is a lot of work, and without visible disabilities, it is even more difficult living in a world that judges you because of your lack of noticeable limitations.

In the past I have shared in my blog, suggestions and skills that make life easier living with a chronic illness. But, recently it was brought to my attention that some individuals are unaware that hidden disabilities are just as valid as physical ones.

Every day is a struggle for me to go to work.  Somedays I am fatigued and in pain, and the commute is unbearable.  Other days I am full of energy and strength, and dreading when this frame of good health will end.  I have strategies! One of the most important ones I use is getting to work at least an hour before my start time, securing an advantageous parking spot close to the entrance, and conserving energy early in the day, in order to make it through a full school day. 

Last week, the parking space I usually occupy and don’t own, was taken by one of the few individuals that are privy to many of my work challenges. It was disappointing to me that this person lacked common sense and consideration by parking in that spot, knowing how it would adversely affect me, which is the reason for this post.  I am saddened to come to the realization that there is a lack of understanding in the workplace of what a disability is and knowledge that all disabled people don’t look/act alike and by no means are confined to wheelchairs or need specialized accommodations.   Some of us just need understanding and common courtesy, and that shouldn’t need explaining!

 

Smooth Sailing for all this coming week! Mary Ann

  

June 6, 2017

A FRESH APPROACH TO LIFE!

It’s not all bad living with a chronic illness!  As bad as it may seem and feel, I’m realizing that there are silver linings that appear as your life continues.  This is my fourth spring/summer season with Rheumatoid Arthritis and I’ve come to realize I love solving the problems associated with the disease, and I embrace its challenges. Every season presents you with an opportunity to explore and learn what works and what doesn’t.  As the seasons change you realize yours needs, whether it be professional, dietary, cosmetic, or wardrobe. This year I haven’t purchased anything in season,  just necessities that are what I would call my personalized adaptive style!  

 

 

All the items I purchased are replacements of things I already own, that are no longer useful, comfortable, or fit.

 

 

 

 

Winter, Spring, Summer, or Fall I’ve always had a bunch of warm, cozy, and comfy sweatshirts to wear on chilly evenings or informal daytime excursions.   I’ve finally given up fighting to get the sweatshirt over my head with swollen fingers and lack of strength.  The ribbing on the knit cuffs are absolute torture, if they don’t get stretched out over time. Basically, I needed something that slips easily over my head, and doesn’t put pressure on my wrists.   I found the perfect sweater to take the place of my now defunct sweatshirts.  

Coastal Blue and Bleached are the colors of each sweater I purchased recently to replace my sweatshirts.  The Vince, oversized, lightweight, 70/30 cotton/polimide blend sweaters, are keepers.  Unlike sweatshirt’s ribbed neck and cuffs, this sweater is a loose knitted, dropped shoulder, at Saks for $108 each on sale, versus the original price of $345 each.  I justified the expense when thinking about the ridiculous prices of some of the sweatshirts I have purchased, since they are only used casually and were rarely revered.  The coastal blue sweater has seen major action since arriving, dressed up and for lounging.  Totally worth the ease and clean look for any season. 

My watch needed to be replaced!  When my wrist swelled up, and the concealed folding crown clasp was not adjustable, it was impossible to wear.  Getting on in years I no longer could read my small faced watch without glasses.  So two strikes, I sold the watch and have been using my cell phone for telling time.  Since I don’t always travel with my cell phone, I choose to buy a 40 mm watch from Abbott Lyon, UK.

I choose a Nude Pink Leather Kensington 40 with a white case and gold metal.  This is not an expensive watch, I just happened to love that it only has necessary details, simple clean design, and was only $99.  I’ve had it a few weeks and it is serving its purpose and I am pleased with this purchase.

Give a Girl The Right Shoes,

And She Can Conquer the World”

Marilyn Monroe

For years I’ve struggled finding shoes/boots that I could wear to work and out, even during a flare.  Previously, I’ve posted a blog about the shoes and brands I now wear, and surprisingly since those shoes wore out, I have had a horrendous time replacing them, especially winter shoes.  This past winter I figured it out, buy suede! Suede will give during times of flares, allowing you to wear your regular shoes.  They absolutely stink in the rain and snow, but I found the perfect solution a month ago, the  Aquatalia Red Boot!

I can’t remember being so enthused about a pair of boots in my life.  These are the Farell Suede Chelsea boot with a 1.2″ stacked heel.  Wait, this shoe has a padded leather sock lining, I actually put these boots on and occasionally glance at them on my feet, while reading in bed!   But the most impressive attribute of this boot is they are weatherproof and stain resistant! I love these boots and cannot wait till the fall to wear them outdoors and out of bed!  I leave you with a link to Aquatalia’s Weatherproof Guide! 

Have a great week!  

May 30, 2017

FAIRMONT COPLEY PLAZA HOTEL, BOSTON, MA

On and off for the last 6 years, I spend a night or two at the Fairmont Copley Plaza Hotel on or around the Memorial Day weekend alone.  Last year I wrote a bit about my stay and visit with my friend Irene.  This year my visit was with Jeff and Sean Patrick earlier this month. We stay at the Fairmont because I feel a connection to the hotel, and most importantly, it never disappoints!  I love the central location, my friends still live in the area, and it is a great jumping off point to do anything in Boston!  

I’m real familiar with the area, I went to school around the corner on Commonwealth Avenue, and spent numerous hours diagonally across the street at the main branch of the Boston Public Library.  On many occasions waiting to be picked up by my Mom or sister, I sat on the cold stone bench that encircles the library, eating roasted chestnuts and burnt popcorn!  My mother told me the story of that fateful day she got married on January 6th and was snowed in, due to a blizzard.  She spent the first three nights of her married life at the Copley Plaza, while waiting to catch the first flight to New York City.  I know she spoke highly of the hotel when she regaled us with stories of her wedding, and realize she never spoke of where she stayed in NYC.  That speaks volume of the Copley Plaza, and its place in her heart.    I seem to have gone off on a tangent, mainly because I adore this hotel but all I really want to do is share my visit with my husband and pup, and the great time we had at this beautiful hotel.  The whistle tour starts now…….

We were lead to the….

on the 5th floor, overlooking Copley Square and the Boston Public Library!

The boys were extremely comfortable and I went for a little workout upstairs!

The view was spectacular from all angles, and the snacks were okay!

 

One of the really unique things they have at this hotel are their canine ambassadors. 

Catie & Carly Copley

Both of these dogs are rescue dogs, and are usually at the hotel together when we visit.  On our last visit, only Carly was present, Catie had gone home for the day!  Sean Patrick is very friendly with Catie, knowing her for years and missed her!  Last week I learned that Catie had passed away, and we will miss her!  I leave you with a picture of Sean Patrick and a very special lady, Catie Copley!

Have a great week and I hope you enjoyed a small glimpse into our life!  

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