Sunday, Funday

Morning and Happy Father’s Day.  It’s a beautiful day here in New England and after working hard yesterday in the yard, Mr. Phat and I are looking for a day of relaxing by the coast.  We both could use a day of down time.  He’s still recovering from his spinal fusion and finally is experiencing some relief from the pain.  He’s got a long way to go but is moving in the right direction.

I had an extra busy winter and spring with taking care of him, and working a new position at my office that I love, but it keeping me VERY busy.  It’s fast paced, high energy and has pushed me back into sales in a satisfying way.

I also spear headed a reunion weekend at my college in Maine which was attended by almost 100 people from my class and 1500 from all classes.  It was a very successful event and I made it home, full of nostalgia and love.  The next night I started with the sore throat and fever and by morning was feeling lousy.  Just what I didn’t need, was to take 2 days off from work, but I had no choice.

But, there is a huge difference for me now, than there was with my prior medication regimen.  I loved Enbrel, but I would get very sick, be down for 7 – 10 days, and need anti biotics to clear my sinuses and lungs.

With Xeljanz XR, it’s a daily pill, so it basically leaves your body each day.  When I feel punk, I pass on taking it, helping my immune system work on the germs.  The enbrel stayed in my system for a week or more, so unless I got symptoms on the day I was to inject, my immune system was too compromised to fight the bacteria.  My ENT told me several years ago that it was the worst drug for my sinuses, but it suppressed my RA so well, what choice did I have?

This week, I got sick Monday night and didn’t inject the MTX either.  I skipped Xeljanz XR for a couple of days and managed to get to work after 2 days sick – which is new and different for me.  (ok, a little more joint pain, but since I was laying down, it didn’t really matter)

I was really bummed when Enbrel stopped working, but in hindsight, I have found benefits of my new drug regimen.  Wishing all of you health and happiness.

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Spring!!!

Happy Spring.  Just when we thought it wasn’t going to show it’s face, it comes.  And this weekend has been a beautiful weekend for being outside and working in the yard.  Naturally this morning I woke to a very painful back, but I took my celebrex,  some tylenol, and  started moving. I managed to make it back outside again, but didn’t do work that strained my back.

Mr. made his appearances outside as well – he washed our two cars and moved around a bit.  He is coming along from his spinal fusion.  His left leg was such a problem before surgery but he indicates that it’s much better and that is visible because he no longer drags his left leg when he walks.  He has a long way to go still and he’s trying to start getting back into the activities of his life.  I had taken him to a meeting this week and on the way home he mentioned how fatigued he was and that he was tired of being tired.  So I told him about being a Spoonie .  I know that my readers who have RA or another chronic illness are very familiar with the Spoon Theory and work hard at counting your spoons as I do. He listened to me and he didn’t think I was nuts, he said that he’d never heard it put that way, but it make perfect sense.  So now we are both Spoonies!!!

After missing last year’s ski season and most of this years ski season, I did manage to get to NH and skied 3 mornings.  It was pretty incredible – almost seemed like an outer body experience because my knees didn’t hurt!!!  I couldn’t believe that this was me skiing with NO pain at all.  I’ve skied with pain since 2000, so it was pretty incredible!!!

skiing 2018

This is part of the motley crew that I ski with – that’s me in the white.  As you can see, we’re not always a uniform group!!!  So I’m looking forward to next season and we have Switzerland in our sights.

Lastly I had a terrific lunch 3 weeks ago when I met Mary Ann of RA Style & Flare . We met through our blogs last year and discovered that we lived near one another, so we had a great lunch together.  I can’t tell you how comforting it is to meet someone who really knows what you feel and go through.  We definitely will be getting together again, but not until after Mary Ann has some surgery this week.  I’m wishing her good luck and am sure she will come through with Flying colors!!!

lunch with Mary Ann

Sometimes being a Spoonie can be OK!!!

Annual Fall Celebrations

Good morning friends.  Hope your Thanksgiving was pleasant and peaceful.  We had a busy weekend with family and were happy on Sunday afternoon to sit and watch football.  However, by Monday morning it was obvious that I needed to see my doctor because I’d been coughing for 10 days and it wasn’t getting better.  He diagnosed my annual fall upper respiratory infection with bronchitis.  I’m home on the couch with my Zpak and cough syrup with codeine.  Still coughing but maybe a bit better.

We took our annual trip to Chicago this fall and I was proud of my steps on one of the days.  7.45 miles with a knapsack on my back.

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I walked the whole city that day and not only did it feel good, I felt great the next day as well.  So I think that the knees are healing very nicely.  Ski season opened over the weekend (another fall annual tradition), and I hope to hit the easy slopes late February for some skiing.

Mr. Phat’s heart has strengthened and he’s feeling better in that respect.  Two heart procedures, an extended hospital stay and new medications and he’s doing very well.  However, he still has nerve pain on the left side of his body.  We thought he had Lyme Disease, but now we’re not so sure.  We’re thinking it’s some degenerative discs in his neck and back.  We’ve seen a pain management specialist and see a spine specialist later this week.  Seems we are finally on the right road for him after many many months of searching.  Let’s hope.

 

Pink Promises

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Photo from 2015 – Team Fascione: Son in Law Jason, Chris’s daughter Alicia holding granddaughter Molly, grandson Landon, Chris and me.  

October is Breast Cancer Awareness Month.  The color pink dominates many events and perhaps some people feel oversaturated by Pink.  Not so for families who’s lives have been forever changed by Breast Cancer.  My family is one of those families.  My husband Chris lost his wife to Breast Cancer in 1994.  In 1993 Chris and Nancy participated in a fledgling breast cancer walk at India Point Park where they proudly raised $62.  Nancy passed away 10 months later, but Chris kept walking.  Every year since he has walked in her memory because he made a promise to himself that he would.  Some years he would say that this might be his last year, but then when October came around, he remembered his promise.  This year will be his 25th, most of those years with his daughter and her family and I’ve participated the last decade. 

This has not been an easy year for Chris.  He has visited the hospital three times with heart issues and recently had a procedure that we hope is a permanent  fix to his heart.  He also is struggling with lyme disease, which has been debilitating.  As October approached, he knew that he wasn’t up to walking in the annual Making Strides Against Breast Cancer Walk.  I reminded him last week that he orchestrated a very nice golf outing for the Realtor Board that he is President of and there are generous donations going to Habitat for Humanity and the Gloria Gemma Breast Cancer Resource Foundation, a local Rhode Island organization that does wonderful work with families dealing with Breast Cancer.  I suggested to Chris that generous donation could suffice for his Pink Promise this year.  

The reason I love this man is because he is a man of his honor.  He wants to keep his Pink Promise this year.  He can’t walk, but I sure can.  I have TWO NEW KNEES!!!!  So we will have our leader cheering us on from the sidelines this year, but the rest of us will walk to honor Nancy and all the families who’s lives have forever been changed by Breast Cancer!!  Think Pink.

Fascione group donation page

RA Blog Week 2017 – Hobbies

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I must say that I have enjoyed #RABlog week.  Not only has it made me consistently write, but I have also consistently read other blogs.  Some that I read regularly and also some new ones that I will definitely read going forward.  Day 4 is about Hobbies.  This year that’s a tough one for me to talk about.

My number one hobby for a long time has been Skiing.  Snow Skiing.  In fact, my parents live down the street from my home ski area and Mom refers to me as “Ski Daughter” to her neighbors and friends.  I have a season pass every year at that mountain where I ski most weekends and some weekdays.  We also have a group that regularly goes to Switzerland for a 10 day trip.  I had planned to go in March, 2017 but had to back out because of my Knee Replacements.  I also had to turn in my season pass for a refund.  This coming winter I’m reluctant to do much skiing, and any I do will be done late in the season, on a mid week day where the sun in shining.  Just enough to take a few steps to know that I can do it again.  To this end, I’ve returned to regular workout with my personal trainer.  We are working on my legs.

Probably my number 2 hobby is gardening.  Sadly, that has been neglected this year as well.  I wasn’t well enough to garden until the middle of August so the weeds took over.  Hopefully next year I will be up to doing some gardening because I think of it as soul work.  When you’re hands are in the dirt and you’re making your world a little more beautiful, you are definitely feeding your soul.

I wouldn’t say that golf is a hobby.  As a sports junkie, I’ve watched it for years and started playing about 10 years ago.  Sadly, I’ve not been able to golf last season or this season although I’m feeling ready to go out and swing a club.  But I like to do it with Mr. Phat because he’s a patient teacher, and his health has not allowed him to golf this summer.  Perhaps next year we can go back to a weekly “nine & dine” round.

The only hobbies that I’ve participated in this year would be the watching of sports on TV and a little bit of reading.  So that’s not saying much.

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Here’s hoping for a better Hobby year in 2018!!!

RA Blog Week 2017 – Partners

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Where would we be without our partners?  What a great question.  Today’s #RABlog week post is about our partners.  I had almost 10 years of living with RA when I met my husband so I had a groove going.  He knew I had a medical hiccup but it didn’t phase him.  He had nursed his sick wive for 4 years before she passed, so he was well versed on illness.  And heck, I didn’t look sick!  I went to the gym, walked his dog and skied.

Four months into our relationship I had a terrible ski accident and he took care of me for the next 4 months at his house.  But I came back better than ever and we spent a number of years being very busy with life, and work.  We skied every winter, including 5 trips with our group to Europe to ski.

March of 2016 was when I went downhill a bit – my knees were slowly falling apart.  Mr. Phat, as I call him, drove me to doctor visits when I couldn’t drive, he picked up meds for me and he would be the one to take the stairs to the basement.  It never phased him, he never groaned or said “I have to go down again.”  He willingly did anything that I couldn’t.

The support that I have consistently received from him continued this year when I decided to have my knee replaced.  I underestimated the pain I would experience due to the stoppage of my RA meds for a month around the surgery.  I cried a lot of mornings and he would take care of me with ice packs, coffee, food and meds.  He took care of anything that needed to be taken care of.   A few weeks after the first total knee replacement, I confidently decided that I wanted to have the other knee replaced.  So eleven weeks after the first surgery, I had the second surgery.  Even when I ended up back in the hospital 3 weeks after surgery for some bleeding, he was calm, cool and took care of my every need.

Not sure how I got so lucky.  I always say that you get what you give.  We both put each other first which is what I believe a partnership should be.  I don’t think I could have gone through two surgeries so close together without him.  We are blessed.

RA BLOG Week 2017 – The best tips from those living with RA

BANNER2017RA is a life changer.  When I was diagnosed, I thought I was too young and that RA was for older people like my grandmother.  I’m certain many other RA patients had the same thoughts when diagnosed.  Then the pain and reality set in and I’ll admit the first couple years were a struggle.  Took me a little while to figure out how best to manage my life with RA and I’m going to highlight three tips that have helped me get to be a person who’s life is minimally affected by RA.

  1.  Learn everything you can.  For me, that was reading on the internet, reading books, and reading blogs.  This is how I connected with others that had RA.  I learned how they managed to live their lives – whether it was with little interruption or great changes.  I put everything in the vault for future use.  If I hadn’t read, I wouldn’t have realized there was an injectible form of Metho, which is the one medication change that has had the most impact on my RA still to this day.  I also wouldn’t have met some wonderful online friends with RA.
  2. Attitude.  I say attitude is everything.  I say Life is 10% what happens to you and 90% how you deal with it.  That’s the greatest lesson I learned from a decade of therapy.  It’s all on me.  I can face each day in misery or I can squeeze joy out of small things – like a beautiful sunset, or a phone call from the right person.  I have really learned to not sweat the small stuff.  I urge others with RA to understand that there is very little we can control, beyond our own reactions to what happens to us.  You can’t control everyone and everything around you, you can only control your response.
  3. Balance.  I use this term alot when I talk about my RA.  I have to plan life events carefully.  I cannot work my full time job and go out several evenings during the week.  If I have functions after work, one, maybe two per week is about all I can manage.  I need down time on the weekends, and I also need to be sure that I get my walks in 5 or 6 days a week.  I have to keep moving – mobilize my joints and stay lubricated.

These may seem like little tips, but they’re part of my mantra on life with RA.