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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.

Home

Last night, I came home from the hospital.  My new knee came home with me.  Overall the surgical procedure was fine.  The thing I was most nervous about was the epidural, which was a very insignificant part of the process.  No pain or discomfort and I was numb for 3 hours after surgery in recovery.  Sadly, the block wore off sooner and more completely than they expected, my room wasn’t ready, and they didn’t have pain meds in the recovery room.  Which I had trouble understanding.  That, and the recovery room wasn’t too busy that day.

They finally put some dilaudid in the IV, but it was too late and I was way behind on the pain.  When I got to the room I was in such distress, I cried for 3 hours. Mr Phat kept trying to encourage me to breathe deeply in and out.  Ultimately they got enough pain meds in me to get ahead of it and I’ve been doing fine since then.

The day after surgery I was getting in and out of bed fairly easily, and did the long “loop” on the ortho floor.  My doctor visited and said that the old knee had a lot of erosion, which is typical of what they see with Rheumatoid patients.  Not surprising.

I’ve already had my first Physical Therapy session this morning.  He thought I was moving along on my walker pretty well, and he showed me some exercises to do, interspersed with walking and icing.  That’s what I will be doing for the next few days – walking, icing, exercising and resting.  I will keep you posted on my progress.

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.

 

October

October 1.  Where did September go?  I’m sitting enjoying coffee looking out the window at the rain.  Fall arrived this week in all her glory. While I will miss summer, fall has great colors and smells associated with her, how can you not embrace it?

Probably a good time to update you on my medication.  I started the Xeljanz just over a month ago and it immediately helped the pain and inflammation, but it also was very difficult on the digestive system.  I also supplemented the Xeljanz thru September with a little bit of prednisone – I had a lot going on and needed to be as pain free and mobile as I could.  I felt pretty good for the the month, other than the upset stomach and relied very little on pain meds.

Visited the rheumy 2 days ago.  We both had reached the same conclusion which was that we didn’t want to give up on the Xeljanz too soon.  He has had such success with the medication.  He gave me a script for 5mg pred, told me to take 1/2 or 1 each day and only take 1 Xeljanz and not 2 per day.  I started that regimen yesterday and waited until after breakfast to take the Xeljanz.  Yesterday was  a pretty good day so perhaps we’re onto something.

Let’s hope because today and tomorrow we finish emptying the kitchen and Wednesday starts the demolition.  I am the painter for the renovation so I am going to need to have my legs in good working order to paint the walls.  Wish us luck.

Lastly, I wanted to let you know that Mr. Phat and I got married in September in a very small, secret, midweek ceremony.  6 adults and 2 children.  We had a fabulous day.  After 10 years of being together we decided it was time.

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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.

Spoke too Soon

Saturday I posted to express my appreciation for all the support I received from Phat50Chick.  Sunday morning I woke early and once again the left knee was excrutiating, very swollen and I couldn’t put any weight on it.  Mr. Phat ran to the pharmacy for another Medrol pack and I started my second course of prednisone in less than 2 weeks.

This time I will admit to not having felt progressively better each day.  It’s been very slow to improve.  Today I’m better, but I still have swelling, pain and still am limping, even though I try not to.  It dawned on me last night that I had lyme disease last summer and I wondered if I had a final follow up blood test to determine that I was no longer fighting it.  I called my primary care doctor this morning and he wanted me to come in for a blood test, but then realized I was on prednisone and so I can’t have the blood test until 2 weeks after stopping taking the pred.  Which is the 29th of July.  If I can go that far.  I did find this ugly graphic on the CDC website but it’s appropriate.  The right hand picture is me.  One truly fat, overswollen, can’t straighten out or bend it, knee.

medical illustration of Erythema migrans, medical illustration of Bell's Palsy, and medical illustration of an arthritic knee

Maybe it is RA.  Maybe I’m having a flare in my knee.  Maybe the Enbrel has run it’s course and I have to switch off it.  I have an appointment with my rheumatologist next week to discuss that possibility as well.  I also have a consult with a acupuncture group.  Because I’m curious about acupuncture.  But maybe it’s not RA???

As I’ve always said here on Phat50Chick – you have to be your own advocate.  Your own doctor.  Because I have RA, the ortho and rheumy didn’t think about Lyme, and my Primary Care didn’t really either.  I had to be the one to remember the lyme and look it up and think – Huh?  You can’t be too sure.

I will keep you posted.

 

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)