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.

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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.

 

In Like a Lamb

March definitely came in like a lamb, compared to the last few months.  Since November I had gotten sick in 4 consecutive months.  I think it was actually the same infection that kept rearing it’s head.  Finally, the 4th course of antibiotics, coupled with a new allergy medication seems to have done the trick.  I’ve been healthy for about 5 weeks.

I did stop the injectible RA meds for 6 weeks.  Over the past few years I’ve wondered how well they really work.  I found out.  By the long weekend in February my wrists hurt enough to need ice, my knees hurt like days of years ago, pain meds barely touched it and exhaustion ruled.  I started back on the President’s holiday with an injection of Enbrel.  The following Monday I did an injection of Methotrexate and this morning was Enbrel.  I thought I’d try alternating weeks rather than taking both each week.  Perhaps too much immune suppression lowered my defenses too much.  So far so good.

Finally I got a chance this past weekend to try out the gear I purchased:

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And it was a beautiful weekend to do so!!  This is Mount Lafayette, across from Cannon Mt20160306_083551 [141181]

This Picture is from the Mittersill Chair looking over to Mt. Lafayette. 20160306_100725 [134286]

And here’s a selfie – not a great picture, but I was having a ball!!!

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The season isn’t going to last too long in New England this year, so I gotta ski while the skiing’s good.  Thankfully my joints feel good enough to be out there.

 

Winter Finally Arrived

It’s taken a few extra weeks, but winter made an appearance yesterday and today.  We had snow flurries all day yesterday, which amounted to about half an inch at home.  Today was bitterly cold.  Didn’t take me long to hit my slovenly winter stride.  I had a challenging work day yesterday and got home to the woodstove cranking, and asked Mr. if it was OK to sit in front of the TV and binge watch something.  Which is what we did and it seemed very theraputic.  Tonite I had my session with my trainer and she kicked my butt with kettlebells.  You can burn up to 1200 calories per hour with kettlebells.  I lasted about 20 minutes before I yelled Uncle and we started on other exercises.

I did ski for an hour over the New Year Holiday.  There is a dearth of snow in Northern New England, and not much opportunity to make snow with the warm temperatures recently.  But there were a couple trails open at our mountain and Mr. and I ventured out early and got 4 runs in before it got crazy busy and we were concerned about colliding with someone on our first day out.  There will be many more days this winter to ski.  But I will say that my legs felt very strong for the first day out.  I can thank my trainer for that.  We do a lot of quad work and while I’m still Phat, she says my legs are very strong.  And they feel strong and tight.  Not so much my core.  Sigh.  Someday.

I hope you all have a great start to 2016.  I am working on some health improvements and I will talk about them in a future post when I have more information  – the RA is fine, but I need to assess some of the meds and the side effects.  For now, I’m busy planning a busy upcoming weekend with my family celebrating my mom’s 80th birthday.  Hard to believe she has reached that milestone.  But also feel fortunate to have two parents that are healthy, mobile and with it.  I know that can change quickly so we appreciate it while we can.

Spring?

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Spring has been really slow to come to New England this year.  I live in a bit of a snow belt and the snow finally disappeared 2 weeks ago, but it’s not really warmed up very much.  But I’ve been walking on the bikepath 4 or 5 days a week with the dog, so I’m hitting my 10,000 steps more frequently than I was over the winter.

I also started back with my personal trainer Nazi mid March and that’s been a great move for me.  I do feel so much better overall when I invest one hour per week with her.  I have always known that movement is the best healer for my RA, but sometimes I don’t listen to my own advise – particularly during this long winter.  I did a lot of hunkering down in front of the TV binging on Netflix when I should have been moving.

IMG952623Remember her?  Well she’s back!!

The RA is still there in the background, but it is not in command of my life right now.  I’m in command, spring is here and I’m looking forward to a good summer.