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 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)

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:

Screenshot_2016-03-30-20-04-22 [393131]

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:

Screenshot_2016-03-30-20-04-56 [390922]

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:

20160327_094420 [390500]

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

Thanks

Not to be redundant, but I need to give some thanks today, Friday as I finish out the week with my first Fitbit Workweek Hustle Challenge with Bridgette from Bridgette’s Digits and not only did she rock her steps this week, but she made me step up on mine as well.  No pun intended.

Screenshot_2015-11-27-14-53-48This is where I am today at 3pm – the day after T-giving, with a total over 60K for the past 7 days and it’s because of her motivation, and the challenge.  I’ve already been out and walked the dog for 2 and a half miles, run a couple errands and still have 9 hours left in the day.  Bridgette and I have been neck and neck this week in our friendly competition and we confessed that it was both fun and motivating.

So Thanks Bridgette.  You’ve come a long way this year.  Last year I know you couldn’t imagine yourself taking 5,000 steps a day, never mind 10K or even 20K.  I know that you have shaped up big time this year and I’m very proud of you.  I’m happy that I had you to kick my butt around this week – not sure I would have done half this week without you breathing down my neck.

If you want to increase your steps – an activity tracker is a great way to challenge you to move more!  Which I needed today after a day of eating.  This was our contribution to the Thanksgiving spread:

antipasti

Mr. Phat’s Antipasti

Happy Thanksgiving Weekend Everyone.  Hope you had the chance to Opt Outdoors today like I did and that you’ll participate in Small Business Saturday tomorrow.  What great concepts!

Fall

Fall.  Leaves fall.  Temps fall.  Daylight falls.  Phat50chick falls.  I usually get sick this time of year.  I push through summer and try to pack in all the summer fun we didn’t get to in September and then crash and burn in  late October.  I skipped last year – the first fall in years I managed to stay healthy.  Last week I felt punk early on and thought it was medication related, and I finally felt better on Thursday.  So I got my flu shot.  Probably not the best move.  The first time I got a flu shot it knocked me down, but I’ve escaped that until this year.  Luckily there were no plans beyond Friday noon that I had to abide by, so I spent yesterday prone on the sofa and expect to do the same today.  It’s a good time for reflection, enjoying the autumn leaves out the window, the warmth of the wood stove, and the smell of the soup in the crockpot.

It was a good fall.  We accomplished alot.  IMG_0547  20151018_094454

Once again we participated in Providence’s Making Strides Against Breast Cancer walk.  Mr. Phat has done this walk each year since 1993 and this year our grandson walked most of it with his Papa.

sailing1  IMG_0619

We also had the great fortune of a late September sail with friends.  Curiously enough, the photo on the left is of me and my friend Debbie.  She’s the closest person to me with RA.  We are on practically the exact same medication regimen.  She’s had it for 5 or 7 years and reached out to me when diagnosed.  She was in such pain.  I remember telling her it would get better and happily it has for her.  She is an active grandmother and she and her husband sail most summer weekends.

20151020_175352  20151029_175400  I’ve done a lot of walking on the East Coast Greenway this fall as well.  You can see the fall progression from left to right in the pictures above.

So now it time for a little rest before my second favorite season behind Summer.

DSC02405Yup.  That would be winter.

Walk The Rhode Ahead Status

I’m in week 4 of my 6 week challenge of 420,000 steps.  Quite honestly I thought it would be more challenging for me to average 10,000 steps per day than it has been.  The only time I fell behind was when we had 2 days of rain.  I don’t have a treadmill and didn’t get as many steps in during that time.  But I’ve managed to be a little bit ahead of my goal so far.  To be on pace, I would need to be at 238000 steps at the end of today and I’m already at 245000.  I’m planning on walking after work tomorrow, and Friday we’re going to golf which is a great way to get steps in.

I bought a set of Keen walking sandals last week – mine are similar to the picture above, but they’re just plain brown.  I’m not one that loves to wear socks and I love sandals, but wanted a good pair for walking.  I love these even more than I expected that I would!!  They’re functional, comfortable and cool for summer.  Great purchase and I will continue to wear them as often as possible after the Walk The Rhode Ahead Challenge is finished.  Not sure how good they would go over at the Insurance office where I work, but I’ve been tempted to test the dress code.

See you out on the Rhode!!!

footprint : receding footprints