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!!!

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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.

RA Blog Week 2017 – Mental Health & Ra

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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.

Saturday musings

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I’m vacuuming as I write this.  Seriously.  I purchased a Roomba earlier this summer.  We had given one to my parents at Christmas. They’re hard to buy for and my husband hit on the idea, we researched and bought it for them.  And they love it.  They talk about it regularly – I think mom called it an amazing little machine.  So I had some coupons and gift cards and I bought one.  We also love it.  My kitchen floor has never been so clean.  We dock it in the kitchen in a corner and Mr. Phat will start it up when he takes the dog for a morning walk and shuts it when they come home.  A large part of my house is one level and I can vacuum the 40 foot long great room, the bath room and the office at the same time.

I’m not sure why I started out talking about my roomba except to say that as I’ve gotten older, it makes sense to find ways to make our lives easier.  I still have a full time job and I’m not ready to give it up, so I can’t get to house and yard work like I used to.  Mr. and I know that we really need to hire landscapers to help with the yard if we are going to stay living in our home for the future.  I’ve thought about a maid service, but the roomba helps out and our house is small – I can keep the house fairly clean.

I just ordered a telescoping window cleaning set that was marked down to 1/3 the price. It hooks to the hose and helps clean the windows while you stay on the ground.  I can definitely use a tool like that.  Now if only I can find one that will clean the gutters!

I’m feeling good.  The knees are really almost pain free.  I’m walking about 7000 steps a day and haven’t had a chance to increase it.  I need to carve a little more time out of my day for walking to get to 10,000.  My RA is better, but I still ache in the shoulders, wrists and fingers each morning.  Increasing my dose of Methotrexate has definitely helped ease the RA pain.

I’m glad I’m feeling better because Mr. has lyme disease.  Sadly his is the classic misdiagnosed case.  We live in the woods.  There are ticks everywhere.  He’s had tick bites and has found them on him, but never had a classic bulls eye.  He did have a rash last year that the doctor said was excema but we don’t think that now.   He’s felt lousy since February and we kept asking the doctor about lyme.  He had several negative lyme tests back and our primary care sent us to the cardiologist, the urologist, the neurologist and then wanted us to see a rheumatologist.  We saw a lyme specialist instead who said that the mainstream medical community is missing the boat on lyme.  According to him, it’s an epidemic and they won’t acknowledge it exists unless you get a positive lyme test.  The lyme test protocols are 40 years old.  The disease doesn’t follow the same pattern.  It’s very frustrating and debilitating.  Mr. started an antibiotic, supplement regimen and we are hoping for some improvement soon.

That’s my update for today.  It’s raining hard here so I can do some work inside and read my book about Lyme Disease.  Have a great day and weekend friends.

Mid Summer update

View from lunch yesterday in Stonington borough in CTstonington

Tomorrow is 11 weeks since my second knee replacement and 22 weeks since my first.  Feeling good.  I just went on a walk with the dog and realized that I was at a normal walking pace.  It felt good.  I’ve been doing 6000-7000 steps per day and hope to start upping that a bit.  At this point, the most uncomfortable thing I do is stand still.  When I stand still, I feel pins and prickly pinches in both knees.  But otherwise I’m moving along very well.  I went out in public the last 2 days wearing shorts.  I’ve decided I don’t care about the scars.

My RA?  I wish I could say it was better but it’s not.  I’m still very achy every day and mornings are tough.  I saw the rheumatologist this week and he suggested increasing the amount of methotrexate I inject each week.  Today was the first morning I tried that.  We shall see. The dose I was giving myself before wasn’t lasting the week so that I would dose a day or two early, which didn’t thrill my doctor.

The stomach upset that comes with restarting Xeljanz XR has mostly stopped, so I hope that I will soon feel the full effects of the medication.  The doctor said that 2 major surgeries was probably a shock to my system and my immune system is a bit out of whack.  Good point.

I’m not Wonder Woman

I’m done.  Really, that’s how I feel.  I’m totally done with sitting on my couch, being in pain, burning incisions and watching life pass me by.  I expected to rebound from last week’s setback a bit quicker than I have.  I still have major pain and stiffness in the newest knee that was doing so good until the joint filled with blood.  I have taken a couple of longer walks, but the knee is still stiff.  By yesterday I felt like I just wanted to have a good old cry, but I didn’t give in.

My return to my RA meds was delayed by a week due to the setback last week and that hasn’t helped.  I can manage three weeks off the meds, but then after that, the pain is excrutiating and it takes several weeks for the meds to kick back in when I restart them.  I started them Thursday, so they won’t reach full effect for another week and a half at least.  Which means the pain in my joints in the morning is strong.  I thought the knees were the worst of the RA joints, and replacing would rid my body of RA, but that’s not the case at all.  My shoulders, wrists and fingers hurt daily.

The weather hasn’t been conducive to someone with inflamed joints either.  It’s been raining like heck here for 2 weeks.  The morning might be sunny, but then the rain comes.  Today and tomorrow are just rain.  No sun.  I felt better when I saw two friends post on facebook last night about pain in their joints due to the weather.

Yes, I’m whining.  It’s totally not my style.  I promise this is the very last of my whining.