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!!!

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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.

 

Summer 2016

Once again summer has gone fast!!! It always does, doesn’t it?  Considering I haven’t felt my best, it’s been a good summer.  My RA flare is continuing and I feel it every morning when waking up.  The stiffness in my fingers and thumbs is real. And painful.  My knees hurt as well, although they seem a bit better than earlier this summer.

Acupuncture?  I’ve had 3 sessions and I’m not sure that’s what enabled me to walk all around Chicago last week for 5 days, or if it was sheer determination and stubborness.  We walked to dinner 4 nights, once even for 1.5 miles.  I would start the day with pain meds and might add another in the afternoon.  I walked slower than in past trips, and was more deliberate in my steps, but I walked nonetheless.

Cocktails and snacks with two nieces, dinner with good friends one night and 2 business dinners with Mr. Phat and lunch with some gal pals kept me busy for 5 days.

I have a few more acupuncture visits that I’ve paid for and will decide at a future date whether to continue.  My primary thoughts at this time is when is it time to change biologics?  I have been on Enbrel for 8 years.  I was in remission for most of that time, but no longer.  Is it time to explore options?  That’s what’s facing me going forward.  I’ve been trying to be patient to see if the flare resolves itself because as far as biologics go, the devil I know is better than the one I don’t know.  But when is it time to switch?

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Here’s Mr. Phat and I taking selfies with the kids on Molly’s 2nd birthday this week.

 

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Here’s lunch along the river in Chicago one afternoon with old friends.  One of which has RA so we were able to share strategies.

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This is from yesterday.  We spent the afternoon at the Sergio Franchi Memorial concert in Stonington CT.  What a fun event!!

Truth is, I don’t have much to complain about.  I’m doing OK.  RA be damned.

I’m not Superwoman

My favorite season.  I love summer – I love being outside working in the gardens, and having dinner on the patio.  But since my last post I’ve not had enough of gardening or dining on the patio.  The pain in my left knee (formerly my good knee) got excruciating 2 weeks ago – too painful to walk again and I had to resort to using a cane, which hurts my pride, but I’d rather move with a cane than not move at all.

I had to get a cortisone shot at the walk in clinic because the pain made me cry out loud which also isn’t my style.  I set up appointments on the same day with my rheumy and ortho docs.  I prepared myself for a new knee – I thought that I had a block of time  this summer that could accommodate a new knee.  That’s me:  The planner.  OK, the control freak.  And I went in saying “I’m ready, let’s schedule this sucker.”

No such luck.  The knee pain was not due to the deteriorating knee, but was an RA flare.  A Flare? But I don’t get flares!!  I’ve not had a real flare in years.  So I was in denial for a few days as I waited for the cortisone to grab hold and help me return to my balls to the wall lifestyle.

No such luck.  It’s not going to happen I realized.  So this morning I caved in and opened the Medrol pack that my rheumy had prescribed for me and told me to use if I didn’t feel better in a week.  Basically its a 6 day, tapered course of prednisone which I swore I would never ever take again after finally getting off it in 2008.  I said I never would do it.  It’s a super drug – it will attack any inflammation in your body and rid you of it!! But it also is a stimulant.  Keeps me awake for days and swells your appetite.  And your body grows to love it, which makes it hard to get your body off it.

I broke that promise to myself, but the pain last night in the left leg – the entire leg – due to the flare was excruciating.  Took 3 halves of a vicodin pill before the throbbing receded enough for me to sleep.  My dog is stressed because our normal routine has been upset and I’m not walking her.  My routine is upset because I haven’t been walking.  And I feel the RA attacking my wrists too.  It was time to take the prednisone and see what it does.

And 5 hours later the knee and wrist are already feeling better.  So the Doctor is right.  And Mr. Phat  is right.  He said “you didn’t cave. you took something to help you feel better.  It’s OK!”

Superwoman I am not.  But maybe soon I can begin participating in life again.  Especially since the caterpillars are getting ready to cocoon.  (see previous post)

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.

 

Kicking it up while kicking my butt!!

I showed up at the gym today, with my ass dragging.  Last day of anti biotics and it’s raining and that always makes me hurt.  I also missed my RA meds last week because I was sick which means I hurt more than normal.  Captain Cathy comes down, all pumped up from the seminar she went to last week about running a gym like hers. I always get nervous when she has been to a seminar because it means new things!!  She grilled me (in a good way!) about why I’m there, am I getting the results I want and going forward what do I expect.

Then she let me know her expectations.  She wants to kick it up a bit with my training and work through some of the issues with my knee and not overcompensate for them, but rather push me through them.  Like I always kick the right leg out to the side when raising it, instead of just raising it.  Yeah, until today when she stood with a pole next to the leg, preventing me from kicking to the side.  She gave me quite a bit of core work which is what I told her I would like to see.

I worked harder today.  I didn’t give up on the moves as soon as I’ve been doing.  I think that I’ve been expecting that I would get results even if I just went through the motions.  Today was different.  It was more work, more pushing and I have to tell you that I can feel it all now, but it’s a good feeling.

I might not think so in the morning.  I will report back to you.