April 10, 2018

Smooth Sailing into Year 3!

This month we celebrate the second anniversary of RA Style & Flare. This blog was launched as a means to share information that empowers individuals to live life with Style & Flare in spite of Rheumatoid Arthritis, or any other chronic illness.  That’s what I shared with my readers two years ago in the about post, but I never came clean on why I was really embarking on this blogging journey.

It would be difficult to describe the myriad of feelings I experienced when a name was given to the excruciating pain that was ravaging my body.  After all the medications that were prescribed and the medical information that was given on the initial appointment, I left the appointment overwhelmed, dazed, and still in excruciating pain.  Enough about the particulars, I got home and immediately started searching for and reading blogs about RA.  I was really looking for success stories or stories of encouragement that living life with RA was going to be no big deal.   Sad to say, most of the blogs turned out to be negative descriptions of life with RA and what they share and do was a projection of their own reality and attitude, that was scary as hell!  Even though I truly understood the pain and frustration many of the writers felt, I needed to disconnect from the negativity, I was hurting and needed a life line.  The inception of writing this weekly blog has forced me to understand that medication is only a part of the equation that makes living with RA bearable.  I write about different areas that I need to address due to the changes my body regularly experiences.  In the last two years I’ve been remiss by not mentioning how important it is to surround yourself with people that are winning at life, the ones that enrich your life, that help and not hurt you.  

In previous blog posts I have acknowledged the support I’ve received from friends, family, and caregivers, and today I must add to the list.  For quite a few months I’ve been following a blog written by Leigh called phat50chick with RA.  I met Leigh for the first time today at lunch.  We have a lot in common and it only proved to me how important a positive attitude is.  I think the lunch was good, but the company was better!  It really was refreshing to spend time with a likeminded woman who shared some of her life experiences with RA that helped me and she made my day a little brighter simply with by her positive energy.  So on the 2nd year anniversary I am celebrating my blog and its future, plus the acquisition of a new friend!  Have a great week!

 

April 3, 2018

48 Hours Newport, Rhode Island

With the prediction of the fast approaching 4th nor’easter of the season to hit our coastal town, my friend Elise and I set out to avoid this first day of spring, storm. Both of use needed some relief from the battering of the previous storms and the lack of electricity, this seemed to be the perfect solution. We set out early on March 21st for a 21 mile ride along the low roads to reach our destination, Gurney’s Resort, Goat Island! It became a truly an exciting and invigorating ride when approximately five miles from the resort our visibility and speed significantly decreased due the furious snow fall. We felt it was a sign that we were lucky to get out of Dodge in time and be staying at a resort that would not lose power and be equipped to keep us entertained and extremely happy! 

Let’s cut to the chase!  This was the storm that never materialized after that brief burst of snow, we stayed put waiting for its delayed arrival that never came!  Just like having a chronic illness, sometimes the best laid plans don’t happen and you make the best of what can be!  Well, the following is what we did on our 48 hour staycation in Newport!

Our room overlooked the East Passage, south of the Newport Bridge.  Even with the heavy fog and cold we stayed on our balcony and enjoyed the beauty of the angry ocean.  The room was clean, modern, and comfortable.  The Nespresso in the room was greatly appreciated, as well as the Gilchrist &Soames toiletries.  

 

Everything about our stay at Gurney’s was wonderful.  The Regent Lounge, had the most delicious Negroni Fresco’s and chili calamari.  The workout room was small, but well appointed, and the pool was absolutely delightful!     

We stayed at the resort the first two days, only venturing out for dinner.  From the front desk, concierge, and valet service all the staff went above and beyond to make our stay perfect!  There is a coffee bar in the lobby, a decanter of fresh fruit water replenished as needed, and a day spa with the most extraordinary views!

View from the mani/pedi station!

What I’ve learned from this experience is what I now believe was the intendant reasoning of taking a staycation, a relaxing, restorative, and enjoyable experience. In comparison to my  Staycation” in January 2017 which was an exhausting experience and not a heck of a lot of fun, this was a true staycation. The unpredictable weather we faced is similar to what individuals with chronic diseases face each day, uncertainty of what the day will bring, and making the most of what is present.  Waking up on the day we were leaving with the sun shining and calm seas, we left the resort to stroll the empty streets of Newport and visit some interesting local businesses.

Audrain Automobile Museum

The museum floor overflowed with muscle cars that looked like pieces of art!

Seashells In Bloom

Coastal items ranging from home decor, jewelry, apparel, and so much more!

Farmaesthetics

A skin care clinic and retail store that sells 100% natural, handmade, herbal skin care products!

 The aroma of this store was intoxicating!

We meandered through the streets for hours before leaving for home, and wishing we could have stayed a bit longer!

 

March 20, 2018

The Fatigue of it all!

Long before I was diagnosed with rheumatoid arthritis my life had already changed.  I dealt with the challenges and innumerable doctor’s visits in stride, always hoping that each definitive diagnosis and medication would return me to myself.  Well, that never happened until the correct diagnosis of rheumatoid arthritis, which came with a regimen of medications and a realization that life will never be the same!  These medications have side effects and the first one that reared its ugly head was the chronic fatigue that is part of the challenge that is rheumatoid arthritis.  

The loss of energy caused by chronic fatigue can be devastating.  When I first complained about the effects of chronic fatigue I was told to eat several small meals throughout the day to help keep energy levels up.  I was totally on board with this, but several meals morphed into many, and weight gain and fatigue were ever-present.  It’s funny how many lessons we learn in life that transcend into other areas of life.  Working with a dietitian these past three months I’ve learned to create tool boxes to address the challenges associated with eating nutritious meals, and now I’ve created a tool box of strategies to combat bouts of chronic fatigue.  The weather of late has caused flares and compromised daily schedules, therefore I now follow my newly formed tool box to help tolerate chronic fatigue flares, these are some of the things that have helped me when I’m struggling with fatigue.

 allow extra time to complete simple tasks and accept that some days you will be able to do more than other days     

balance how much I do with the amount of rest I need

exercise is helpful but I must be aware to not overdo it and pace myself accordingly

wear a mouth guard when I sleep

 avoid caffeine and sugar that may spike my energy level 

 avoid or limit stress if possible and keep a record of stress triggers to avoid

 stay positive

Sometimes it feels like a full-time job tracking and addressing my needs when chronic fatigue takes a hold on me.  The weather certainly causes an immense effect on how I feel and it becomes a need to prioritize what I to do versus what I’m able to do!  Tomorrow is the first day of Spring and an excess of six inches of snow is predicted to fall.  The past three weeks have been quite a rollercoaster of weather and today in anticipation of the storm to come the buffleheads were enjoying the mild weather and having a great day, I should follow suit!

 

 

 

March 13, 2018

March Stormin’ 2018

Three storms within the last 11 days!  It is incredibly beautiful, but individuals with rheumatoid arthritis will tell you, these days can be extremely difficult. Individuals with different forms of arthritis are known to predict the weather with joints acting up when a rainstorm is approaching or flares may occur for those with rheumatoid arthritis when a blizzard hits.  

At 4 am this morning when I awoke to a light dusting of snow in the driveway and the brushing of a tree against the side bedroom window, I knew why I awoke so early!  It was going to be a challenging day, considering my experience with previous storms. I knew I could weather this blizzard with the help of my tool box of bad weather necessities and my walks on the beach that loosen me up.

With the impending storm barreling through the northeast and the knowledge that many with arthritic issues may be having a rough time, I decided to forgo today’s scheduled post and let all who are having a difficult time know that I am thinking of you and hoping this storm has not overwhelmed you and you are all well!  Here’s to a great week!

 

March 6, 2018

Nor’easter 2018

March, 2018 came in like a lion and hopefully will leave like a lamb!  After 2 1/2 days of brutal,  wet, and windy weather, I awoke this Monday morning to a light dusting of snow and winds whipping through my side yard. Being a true New Englander, severe storms and hurricanes are what one grows accustomed to living here!  I don’t know whether it is the rheumatoid arthritis or I’m not a kid anymore, but I realize you need more than milk and bread to survive a Nor’easter. A young Mary Ann would love sitting around in candle light having a few cocktails and playing games while listening to the transistor radio, eating junk food.  Well, this past weekend it was mighty difficult putting together combinations of healthy food and limited exercise, leaving me in a blue funk craving healthier food choices and wallowing in the carb doldrums.  Even though I didn’t stray very far from nutritional balance, I really missed the energy and sound sleep I’ve grown accustomed to when eating healthy.

So, this morning I’ve started to compile an “ICE” file, suggested by my RD, Patty Berry!  My “In case of emergency file” will be supported by a gas fireplace, gas stove top, and great neighbors. I will not be dependent on the 3 day supply of non-perishable food products commonly suggested by emergency readiness organizations.  My supplies are going to be the large amounts of batteries I will need to allow me to read my large print books and dine sensibly.  I will now structure a three-day meal plan that will contain ready-made salads and protein, stored in a cooler on the porch.  On the stove oatmeal, soups, and omelets will be a mainstay, and I will have that bottle of wine ready to be uncorked.  Writing this after weathering the storm I realize the cavalier attitude I had that placed me in an awkward position whereas we didn’t have a great selection of healthy food available.  I hem and hawed a day before the storm and didn’t make it to the store, therefore our food selection was limited.  Thankfully, our neighbors fed us Friday night, and Saturday we hunkered down, listened to the wind howl, and ate soup!  

I’m sharing this in an attempt to explain how complacency bit me in the butt, and I’m glad because I’ll be ready when the next storm hits!  It is always a wake up call when you wander the neighborhood and realize just how powerful Mother Nature is!  

Aftermath of the Nor’easter!

Have a great week!