T minus 9

One week and 2 days before the other knee gets replaced.  I am so glad.  It’s so painful all the time.  Every movement hurts.  I saw the doctor this week for my pre surgical appointment and he took xrays that I’m not going to share here, but just rest assured that it was ugly.  Bone on bone throughout the entire knee.  I’m sure it’s my imagination but the pain seems worse since I saw the xray.

We talked about this surgery and you might recall that the last surgery had a little glitch in the recovery room where my body had metabolized the epidural, and the pain was increasing and my room wasn’t ready and they said they couldn’t give me pain meds in recovery and they needed my doctor’s permission.  I’m sure the doc was back in surgery, and I never believed the bit about not giving pain meds in recovery.  Isn’t that what recovery is all about????

At any rate, my surgeon acknowledged that people do metabolize medication at different rates and that when I was coming out of the OR into the recovery room he would make sure that they gave me some pain mediation right at that time.  I was much relieved to hear that – it was the only thing that I was really reticent with having another surgery.  Other than that, I am ready to face this head on and I look forward to when I will not limp when I walk and when I can actually set out with my dog on a 2 mile walk.

That comes closer with each day that passes.

Staples out, rehab continues

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You can see the metal parts that were put into my knee 2 weeks ago during a total knee replacement.  To me, it seems pretty clean and neat.   I saw the surgeon yesterday and the staples came out of the incision.  I have to admit that the incision is very ugly but I’m told it will recede and I’ve sent Mr. phat to the pharmacy for some oil or cocoa butter to soften it and help healing.  The doctor said that my movement is very good.  I really have to work on straightening the knee.  Bending is great, but straightening it hurts.  Unfortunately the other knee is very painful of late.  Obviously overuse has worn it out.  It has no meniscus, so will need replacing at some point down the road, but I was hoping a bit later as opposed to sooner.

I have several options at this point with the non surgical knee.  I can try another injection of Synvisc, which acts as a cushioning agent.  I’ve done that two times over the past 6 years with good success.  Sadly my health insurance doesn’t cover it and it’s expensive but I will check with my pharmacist and determine the out of pocket cost.  I can also have a cortisone shot, but that’s a real bandaid and very temporary.  Lastly, I can sign up and have another replacement.  The latter option I have a lot of reasons why it’s a good idea, but the honest truth is that I wanted to be able to wait a year or two before going thru this again.  Time will tell.  We shall see how the non surgically repaired knee responds to being back on my RA meds and sleep on it and make a decision down the road.

The surgeon said to walk as much as possible.  So I’ve just done a little much needed housework to loosen up my legs and done some stretching.  He said to continue the home rehab exercises and see how I do.

Each day gets better.  I’m sure that will continue.  Thanks to all of my readers for all your support and good wishes.  It means more to me than you know.

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)

Purple Rain

Fentanyl.  Prince died from an accidental overdoes of Fentanyl.  I was afraid that something like this was going to be the outcome.  Fentanyl is the strongest opioid approved for use in the US.  It’s 50 – 100 times more potent than morphine.  That’s a very strong drug that he was self administering.  I read that as little as a quarter-milligram of fentanyl can be fatal. To appreciate how tiny an amount that is, consider that a standard aspirin tablet is 325 milligrams — 1,300 times bigger. For a man that weighed 112 pounds at his time of death, he didn’t need much to kill himself.

I don’t know what it means because we don’t know where he had gotten the drug – whether it was prescribed or illegal, but Prince had a problem.  Seemed that it started with his hips which were worn down from years of performing in high heels.  He had a scar on one hip, but I’ve never been able to confirm if he had a replacement hip or just hip surgery.  It seems apparent that he had chronic, debilitating pain and must have become dependent on stronger and stronger meds along the way.

The answer isn’t stopping people from receiving medications for their chronic pain.  Rather, meds need to be part of whole body approach to chronic pain – it should include perhaps eastern style treatments such as reiki, massage or accupuncture, relaxation techniques as well as properly administered opioids.  The people in Prince’s circle seemed to know that he was in a downward spiral because they had to divert his plane after a show for a dose of narcan, and they had reached out to some doctors for help. Reports said that Prince was going through opioid withdrawal.

I’m just so sad to see someone from my youth and generation gone too soon due to misuse of opioids – and very strong ones.  Everytime this happens, it puts a black mark on opioids which is tough because when used properly they can help people with chronic pain live a more normal life.  RIP Prince.

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!!!