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.

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!!!

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!!!

Sometimes being a Spoonie can be OK!!!

RA Blog Week 2017 – Hobbies

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.

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

RA Blog Week 2017 – Partners

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

RA 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.

RA Blog Week 2017 – Mental Health & Ra

I’m participating in RABlog week this year and I’m very excited about it.  For 5 days there are select topics for each day with a couple of wild card topics.  One of which I’m going to definitely use.

Today is about mental health and RA.  My RA symptoms started 20 years ago at a time when my mental health was at it lowest.  Life had become oppressive to me – my boss had a nervous breakdown and four months later my then husband had an industrial accident.  I spent a year racing around caring for my boss’s clients while taking care of my husband, his injury and the workers compensation court process.  This took a toll on me and one day I realized that I was ready to drive my car into a tree.  I didn’t recognize what I was going through, but fortunately my boss did, having been there.

I was fortunate to connect with a therapist immediately.  She helped me understand depression and stress and the connection.  I also began taking an anti depressant.  Within a year I started having the first symptoms of RA.

That was 20 years ago.  3 anti depressant medications, 4 biologics since then and I’m in a good place.  But I recognize that stress and chronic pain have a huge impact on your mental health.  Perhaps I’m weak for saying that I will stay on an anti depressant until death, but I feel that way.

Earlier this year I went through 2 total knee replacements, 11 weeks apart.  Going through it was long, although I’m happy that it’s behind me.  I did have a few days when I felt the old demon of depression knocking.  Time, and some coping skills, helped me move on from that point.  But it was just enough to remind me how delicate the balance is between chronic illness and mental health.

Four Month Follow up

Good Morning.  Happy Sunday.  It’s a beautiful day in New England which makes me feel a bit guilty for all the hurricane ravaged communities that are trying to bail themselves out.  Or for people who lost everything.  I can’t imagine.  I sell insurance for a living and only once did I have a claim where people lost everything and it’s heart breaking.

I thought I’d give you a run down of my final check up with my orthopedic surgeon.  It was exactly four months from the date of my second knee surgery.  He was happy that I had full range of motion in both knees.  He also said a couple of interesting things.  He said that some people with 2 replacement knees have trouble walking down the stairs normally.  Which is something I have issue with but I am not sure if my brain is holding me back or the movement itself.  I am going to try to figure that out.  He also said that most people with knee replacements don’t get on their knees.  Well I observed my father get on his knees in July and he’s had 3 sets of replacement knees (long story).  That alone gave me the desire to not be outdone by the old man.

I started training again with my personal trainer three weeks ago.  On the first day, she asked me if there was something I hadn’t done that I wanted to. When I asked her to help me get on my knees, she knew exactly what to do.  She put down a weight bench that I could use to lean on and I got on my knees next to the bench and was able to pull myself up.  While it wasn’t exactly comfortable on my knees, it wasn’t painful.  I felt accomplished and when I explained that to my surgeon he was so very impressed and stated that I must be an outlier.  And I believe that I’m an RA outlier.  I try hard to live my life with as little interruption from the chronic disease that I’ve had for 20 years.

Thanks goes out to my dad for giving me the courage to go through all of this.  It was his mother who had RA and never complained.  I also have to thank my bitchin’ personal trainer Cathy.  I love working with her so much and she gives me the courage always to keep reaching for the brass ring.  She said the day I walked back into the gym after surgery for the first time was the only time she’d seen me with a normal gait.  She said I had a confidence she hasn’t ever seen.

Music to my ears.

Almost 2 weeks post op

Tomorrow will be 2 weeks post op for me.  It’s gone by quickly even though at times the minutes seem to be like hours.  Overall I’m doing well.  Progressing.  The surgically repaired knee is now my Good Knee.  My Strong Knee.  It’s stable and sturdy and feels good to walk on.  To that end, I walk mostly unaided these days.  I’ll use my cane overnight or for the first few steps in the morning, but otherwise it is not necessary.

My hurdle has been the other knee which no doubt will be replaced in the future.  Being off the RA meds since the beginning of February has caused the expected flare.  In my hands, wrists and the other knee.  The other knee formerly known as my good knee.  The pain has caused me to cry for a few moments most days.  I get overwhelmed, tired, behind on pain meds or just feel a bit sorry for myself.  I sob for a few moments and then rally.  Because that’s what RA has taught me to do.

I was supposed to stay off the RA meds until after the staples were removed, but I will confess to starting the methotrexate 4 days ago, and the Xeljanz 2 days ago.  The swelling in the new knee has diminished, my physical therapist says I’m doing great – I did climb a set of stairs yesterday and walked down the street and back up (it’s a hill).  Today is the first morning I’ve not cried since surgery.  Yes, I was stiff and sore, but the pain seems manageable and the RA flare is being extinguished.

I’ve had incredible support from Mr. Phat.  I couldn’t have gone through this without him.  He’s held my hand, cooked meals for me, and most importantly is my Iceman.  He keeps my icing mechanism full – he says I have a $4 a day ice habit and we’re not even making margueritas.  My parents drove down over the weekend for a visit which proves that you can be 55, but you’re still a daughter.  Mom needed to see for her own eyes that I was doing well.  I’ve had tremendous support from my friends and colleagues at work, which has helped me go through this challenge.  And my ski group, Team Cannon, left for the annual trip to Switzerland over the weekend.  I know that my spirit went with them.

Stay tuned for more updates.

Home

Last night, I came home from the hospital.  My new knee came home with me.  Overall the surgical procedure was fine.  The thing I was most nervous about was the epidural, which was a very insignificant part of the process.  No pain or discomfort and I was numb for 3 hours after surgery in recovery.  Sadly, the block wore off sooner and more completely than they expected, my room wasn’t ready, and they didn’t have pain meds in the recovery room.  Which I had trouble understanding.  That, and the recovery room wasn’t too busy that day.

They finally put some dilaudid in the IV, but it was too late and I was way behind on the pain.  When I got to the room I was in such distress, I cried for 3 hours. Mr Phat kept trying to encourage me to breathe deeply in and out.  Ultimately they got enough pain meds in me to get ahead of it and I’ve been doing fine since then.

The day after surgery I was getting in and out of bed fairly easily, and did the long “loop” on the ortho floor.  My doctor visited and said that the old knee had a lot of erosion, which is typical of what they see with Rheumatoid patients.  Not surprising.

I’ve already had my first Physical Therapy session this morning.  He thought I was moving along on my walker pretty well, and he showed me some exercises to do, interspersed with walking and icing.  That’s what I will be doing for the next few days – walking, icing, exercising and resting.  I will keep you posted on my progress.

Saturday 8:20 am

 

Damn.  I missed first tram.  Again.  It leaves the station on weekends at Cannon Mountain in Franconia, NH at 8:15 am and for the past decade I’ve been on it.  This morning there’s a little layer of new snow.  “Freshies” we call it.  I love skiing freshies from first tram – there’s no real sound but the skis moving through the snow, pushing it out of your path.  The cold crisp air feels great on your smiling face.  These are my favorite ski mornings.

Since I can’t rush to first tram this morning, I can sit here and enjoy the Freshies out my window.  The flakes are still falling down and the quiet pierces the air.  I’m trying to find the silver lining in the cloud that is my season of not skiing.  Knowing I’ll be stronger and pain free next year.

2 1/2 weeks until Total Knee replacement surgery.  I won’t lie – it hurts.  Rolling over in bed hurts, getting in and out of the car hurts.  Walking hurts.  Finally it seems that the RA flare that has been with me for 6+ months has moderated a bit.  I can open jars again, and cut food without wincing.  Of course starting in 5 days I have to start weaning myself off my meds prior to surgery.  That will be challenging as well.  But I’m  willing to take it if it means “freshies” next ski season.