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.

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.

Personal Training

I haven’t written about my training, or my trainer in quite a while.  Cathy was very gentle and kind with me through this summer as I went through my RA Flare from Hell.  I still made it most weeks, but we didn’t do much that was significant – some stretching and a little weight lifting and then she would massage or use her tiger tail on me, which helps get the kinks out and just made a suffering gal feel better.  She was always empathetic with me and I don’t think she thought I exaggerated my pain.

Now that I’ve changed meds and hopefully am feeling better, she has started gently moving toward more aggressive workouts.  Well gently until this past week when she whipped my butt!!  We used kettlebells and I worked like I haven’t worked in almost a year.

Finally I yelled “Uncle.”

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I feel fortunate that I have the time and expense to devote to my weekly training sessions.  I think they help me immensely with understand that I don’t have as many limitations as it appears.  She pushes me to work beyond what my head may say I can do.  She works on my balance alot and I’m incredibly thankful for all the time we spend together.  Especially this weekend when I spent both days up and down a ladder painting our kitchen that is undergoing renovations.

I bitch and swear at her, but Cathy is truly awesome.

 

TKR

Yes.  Total Knee Replacement.  I visited my ortho this week and learned that instead of needing one new knee, I need two.  The Doc told me in 2009 that I needed a new right knee.  So far I’ve managed my life without getting it done.  Now he told me that the left knee has no cartilage and is also bone on bone.

With RA,  the synovial membrane that surrounds the knee joint becomes inflamed and thickens.  Over time, the resulting chronic inflammation will damage the cartilage.  This will cause cartilage loss, pain, and stiffness.  Then there is OA (osteoarthritis) where as you age, the cartilage cushion that protects the knee will soften and and wear and this causes pain and stiffness.

Another factor is trauma.   I’ve been involved in athletics since I was young and I always had bruised or skinned knees.  I had my share of falls while skiing or hiking.  I fell while biking.  I recently got bifocals and took 2 really hard falls on my knees and hips.  So I think that all three of these factors – RA, OA and Trauma – have contributed to my current knee situation.

So I’m continuing on my normal pace – which is typically warp speed until such time as the pain and discomfort is bad enough that it impacts my life.  Then we will discuss the first knee replacement.  As the doctor said, I’m highly functioning considering the state of my knees, so there’s no reason to rush.  He suggested that when my world narrows is when I need to address surgery.

Until that time, I’m trying to concentrate a bit more on my eating and exercising.  I have been the same weight for 5 years.  Yeah, just about since I started this Blog about trying to lose weight after turning 50.  So I think that I’ve failed!!  Miserably.  I’m doubling down on my efforts because other than my weight and my RA, I’m very healthy.  I’d like to stay that way.

National Pain Report

So I’ve been following the National Pain Report for several months and I like what they’re reporting.  They’re definitely an advocate for chronic pain patients.   The  national pain report published a blog post  today which critiqued last nights AC360  Town Meeting by demonstrating how the show stigmatized those with chronic pain.  The founder and head of the US Pain Foundation who wrote this particular blog posts correctly states that we need to advocate for better solutions that are covered under our medical care.  He asked readers to write to the 2 producers of the show last and try to show how we are real people.

Which I did.  Even though I didn’t see the show, I did want to say that I’m a 55 year old professional woman with a busy job and life.  I’ve had RA for about 20 years and I function very well.  I see a personal trainer weekly (paid out of my pocket) and I used to get massages monthly, but can’t pay both for massages and the personal trainer.  But damn a massage would feel good.  My hot tub is a great tool but it’s not working and we don’t want to throw another $600 to again fix the same problem on a 10 year old hot tub.

Pain meds?   I told the producers that I take between 6 – 10 per month on average.  That’s all.  That’s all I’ve ever taken once I got rheumatoid under control.  I saw a rheumatologist for years who lost his license to practice and his livelihood because he got addicted to pain meds.  I need an occassional pill to take away the pain so that I can be a productive person.  I’m single and responsible for myself.  If I can’t work, I don’t have income.  I refuse to be disabled, so there are days that I need to push on and meds are part of my war chest for those days.   But I’m not going to abuse them.  It’s been 18 years and I’ve not done it yet – I’m not going to do it going forward.

So enough about pain and opioids, although I’ve had my share of pain the past few weeks.  I finally went and had my painful knee xrayed and there’s a lot of osteo arthritis in there.  Not really much of a surprise is it?  I have RA, which deteriorates joints.  I’m 55.  Female. Overweight. Active.  Not Graceful.  Or Gentle.  I fall.  My knees are toast.  Seeing the ortho next week for some discussion.  In the meantime I’m still trying to walk and icing my knee and trying to take pills only when it’s unbearable.

 

Steps

I’ve been mostly a downer lately on my blog.  Talking about RA Flares, cortisone shots, medications, including pain meds, and sinuses.  It was a tough winter for me, but all in all, I managed.  I can afford my health insurance and my medications.  I can afford to see the doctor.  I can afford a personal trainer to help me feel better.  And I am feeling better.  I’ve been hitting close to 10K daily steps more frequently.  Then there’s this which Fitbit sent me earlier this year:

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I took 2,709,353 steps in 2015!!!  That’s 1148 miles!!  Which is 22 miles per week on average!!  The step challenges I participated in last year really helped propel me.

Then this week I got this from Fitbit:

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Since getting my fitbit 12/25/13, I’ve gone 2500 miles!!! Even I think that’s commendable for a full time, chronically challenged person.  And I have this one to thank for taking alot of those steps with me:

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I’m going to keep moving no matter what!!!