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.

 

Happy Veteran’s Day

A big thanks to all the Veteran’s celebrating their special day.  We would not be where we are without you.  And a thanks to the future Veteran’s serving today, including my nephew in the army and Mr. Phat’s cousin in the marines.  We appreciate what you do for us because Freedom is definitely not Free.

Today, Veteran’s day was a great excuse to stay in bed and rest my weary body.  I’m still recovering from my Upper Respiratory Infection, and I need to pack because I’m going with Mr. Phat to San Diego tomorrow.  He has a convention to attend and I thought I would tag along and visit a place I’ve never been.  Maybe get some added Vitamin D in my system.

Also, today, for Veteran’s day, I wanted to shout out to several of my online RA Veteran’s bloggers who help me in more ways than they know.  Their kind words, regaling their lives with RA offer so much support.  Check out

Beating Rheumatoid Arthritis  or The Old Lady in My Bones  or  The Person Next to You

These women enlighten and comfort me each week.  There are plenty of other bloggers out there and I will mention others in another post.  But today as I slowly get myself moving, I wanted to shout out to these people.

Lastly, Healthline asked me to share a post of theirs which is 13 life hacks for those with Arthritis.   Life Hacks for those with Arthritis  Many of them don’t apply to me, but I definitely subscribe to not eating junk.  Eat wholesome foods, and take Vitamin D.  My favorite hack for daily use is this:  My OXO Jar Opener.  Couldn’t live without it!

New Month, New Post

I have to give myself credit.  I’m still at it.  If I have one thing, it’s stick-tuit-ive-ness.

I’m still going once a week for a private session with Cathy the training nazi, and this fall I committed to trying to hit one additional class each week.  I managed last week, but last night there was no class, and tonite?  Well I was tired, forgot to take my meds and was achy, so I came home and walked thru the woods instead.

Any results?  I’ve been doing Weight Watchers for 6 weeks and I’m down 5 pounds.  Not much, but all my clothes are loose and I feel good.  It’s never been easy for me to lose weight – I tend to lose every other week.  And I’m not making excuses, but The Red Sox just won the world series which meant a lot of nervous baseball watching and after all, it is a game of consumption, right? It was hard to sit home watching without munching occassionally.

Weight watchers at least makes me aware of everything I put in my mouth.  I understand the ramifications and try to make trade offs.  But the fact is that it’s just hard.  Especially as you get older.  I can’t work out like I used to.  I don’t have the time every day to devote to activity.  Some days I don’t want to do it.

But I’m still making the attempts.  Slow and steady it’s going to come off.

And the Red Sox did just win the World Series!  Hot dogs and beers all around!!

Blogroll!!!!

Yes, I have a blogroll now!!! I have stated several times that I’m not very tech-savvy. Not only that, but I don’t like to read directions.  Especially when it comes to computer how to’s.  But I wasn’t feeling well tonite and I skipped my monthly Women and Wine Networking Dinner and while Mr. Phat is watching Planet of the Apes, I decided to spend time in the office putting up a blogroll.  I was determined to do it because there are some of you bloggers that I’ve been following for a while – well before I entertained a blog and then some of you I have discovered since starting my blog.  You all help me in many ways – make me laugh, give me some insight, make me feel not quite so alone and encourage me.

So feel free to hover over some of the links to the right of my cyber friends.  I feel as though I’ve known some of you forever and that we’re good pals.  Keep on doing what you’re doing.

On another note – I have felt good this week other than that RA malaise today, and I’ve been to the gym and ate On Plan and within my points so far.  When I got home today, I did what I try to do when I feel lousy – I went out for a walk with the dog.

It helped.  It really did.  Talk to you on Friday after my weekly weigh-in.

Medications, Rheumatoid Arthritis and Weight Gain

Rheumatoid Arthritis Warrier http://rawarrior.com/ is a blog that I follow regarding Rheumatoid Arthritis, which I have.  Kelly that writes this blog is so good with disseminaing all kinds of valuable information about the auto immune disease known as RA.  Today her post was particularly pertinent to me as I started on Remicade in 2001 and took it until 2007 when I started taking Humira and sometime in 2008 I started on Enbrel, which I will dose myself with tonite.  I have cut and pasted the comments below:

1) The Remicade weight gain mystery:

Patients have sometimes wondered aloud whether Remicade treatments contribute to weight gain, especially since RA disease activity tends toward weight loss. This spring, a study on infliximab (Remicade) “showed that anti-tumor necrosis factor-alpha (anti-TNF-α) infliximab therapy is associated with an increase of body fat mass in early rheumatoid arthritis (RA) independently of changes in disease activity and levels of leptin and adiponectin.” The patients who had been claiming “Remicade made me gain weight” had been correct all along.

The report seems to imply that other TNF- α blockers (like Enbrel, Humira or Simponi) could have similar effects. Apparently, TNF- α blockers influence production of a hormone called ghrelin, the level of which has been implicated in Rheumatoid cachexia (wasting due to disease activity) and obesity.

OK, I’m sure that I cannot blame all my weight gain on these medications, but I did take prednisone for 2 years following a ski accident in 2007 and that definitely contributed to my current state of fatness.  I sometimes wonder if its a chicken/egg scenario – is it the disease itself that slows us down because of pain and fatigue? or the meds that contribute to it? and do RA patients baby themselves as well?  Hard to say, but I recall when Vioxx was withdrawn from the market as it contributed to heart disease, I wondered if it’s the meds or the disease they treat that contributes more to the heart disease.  These meds treat diseases where there is inflammation and pain and therefore it logically follows that the patient becomes less active and fit and so is it the chicken or the egg???

On a side note, as a sports fan, I’m so excited for the start of football tonite, even if it’s pre-season!!  Go Pats!!