RA BLOG Week 2017 – The best tips from those living with RA

BANNER2017RA is a life changer.  When I was diagnosed, I thought I was too young and that RA was for older people like my grandmother.  I’m certain many other RA patients had the same thoughts when diagnosed.  Then the pain and reality set in and I’ll admit the first couple years were a struggle.  Took me a little while to figure out how best to manage my life with RA and I’m going to highlight three tips that have helped me get to be a person who’s life is minimally affected by RA.

  1.  Learn everything you can.  For me, that was reading on the internet, reading books, and reading blogs.  This is how I connected with others that had RA.  I learned how they managed to live their lives – whether it was with little interruption or great changes.  I put everything in the vault for future use.  If I hadn’t read, I wouldn’t have realized there was an injectible form of Metho, which is the one medication change that has had the most impact on my RA still to this day.  I also wouldn’t have met some wonderful online friends with RA.
  2. Attitude.  I say attitude is everything.  I say Life is 10% what happens to you and 90% how you deal with it.  That’s the greatest lesson I learned from a decade of therapy.  It’s all on me.  I can face each day in misery or I can squeeze joy out of small things – like a beautiful sunset, or a phone call from the right person.  I have really learned to not sweat the small stuff.  I urge others with RA to understand that there is very little we can control, beyond our own reactions to what happens to us.  You can’t control everyone and everything around you, you can only control your response.
  3. Balance.  I use this term alot when I talk about my RA.  I have to plan life events carefully.  I cannot work my full time job and go out several evenings during the week.  If I have functions after work, one, maybe two per week is about all I can manage.  I need down time on the weekends, and I also need to be sure that I get my walks in 5 or 6 days a week.  I have to keep moving – mobilize my joints and stay lubricated.

These may seem like little tips, but they’re part of my mantra on life with RA.

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Saturday musings

roomba

I’m vacuuming as I write this.  Seriously.  I purchased a Roomba earlier this summer.  We had given one to my parents at Christmas. They’re hard to buy for and my husband hit on the idea, we researched and bought it for them.  And they love it.  They talk about it regularly – I think mom called it an amazing little machine.  So I had some coupons and gift cards and I bought one.  We also love it.  My kitchen floor has never been so clean.  We dock it in the kitchen in a corner and Mr. Phat will start it up when he takes the dog for a morning walk and shuts it when they come home.  A large part of my house is one level and I can vacuum the 40 foot long great room, the bath room and the office at the same time.

I’m not sure why I started out talking about my roomba except to say that as I’ve gotten older, it makes sense to find ways to make our lives easier.  I still have a full time job and I’m not ready to give it up, so I can’t get to house and yard work like I used to.  Mr. and I know that we really need to hire landscapers to help with the yard if we are going to stay living in our home for the future.  I’ve thought about a maid service, but the roomba helps out and our house is small – I can keep the house fairly clean.

I just ordered a telescoping window cleaning set that was marked down to 1/3 the price. It hooks to the hose and helps clean the windows while you stay on the ground.  I can definitely use a tool like that.  Now if only I can find one that will clean the gutters!

I’m feeling good.  The knees are really almost pain free.  I’m walking about 7000 steps a day and haven’t had a chance to increase it.  I need to carve a little more time out of my day for walking to get to 10,000.  My RA is better, but I still ache in the shoulders, wrists and fingers each morning.  Increasing my dose of Methotrexate has definitely helped ease the RA pain.

I’m glad I’m feeling better because Mr. has lyme disease.  Sadly his is the classic misdiagnosed case.  We live in the woods.  There are ticks everywhere.  He’s had tick bites and has found them on him, but never had a classic bulls eye.  He did have a rash last year that the doctor said was excema but we don’t think that now.   He’s felt lousy since February and we kept asking the doctor about lyme.  He had several negative lyme tests back and our primary care sent us to the cardiologist, the urologist, the neurologist and then wanted us to see a rheumatologist.  We saw a lyme specialist instead who said that the mainstream medical community is missing the boat on lyme.  According to him, it’s an epidemic and they won’t acknowledge it exists unless you get a positive lyme test.  The lyme test protocols are 40 years old.  The disease doesn’t follow the same pattern.  It’s very frustrating and debilitating.  Mr. started an antibiotic, supplement regimen and we are hoping for some improvement soon.

That’s my update for today.  It’s raining hard here so I can do some work inside and read my book about Lyme Disease.  Have a great day and weekend friends.

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 Wonder Woman

I’m done.  Really, that’s how I feel.  I’m totally done with sitting on my couch, being in pain, burning incisions and watching life pass me by.  I expected to rebound from last week’s setback a bit quicker than I have.  I still have major pain and stiffness in the newest knee that was doing so good until the joint filled with blood.  I have taken a couple of longer walks, but the knee is still stiff.  By yesterday I felt like I just wanted to have a good old cry, but I didn’t give in.

My return to my RA meds was delayed by a week due to the setback last week and that hasn’t helped.  I can manage three weeks off the meds, but then after that, the pain is excrutiating and it takes several weeks for the meds to kick back in when I restart them.  I started them Thursday, so they won’t reach full effect for another week and a half at least.  Which means the pain in my joints in the morning is strong.  I thought the knees were the worst of the RA joints, and replacing would rid my body of RA, but that’s not the case at all.  My shoulders, wrists and fingers hurt daily.

The weather hasn’t been conducive to someone with inflamed joints either.  It’s been raining like heck here for 2 weeks.  The morning might be sunny, but then the rain comes.  Today and tomorrow are just rain.  No sun.  I felt better when I saw two friends post on facebook last night about pain in their joints due to the weather.

Yes, I’m whining.  It’s totally not my style.  I promise this is the very last of my whining.

One month post surgery

One month out.  I’m finally feeling human again.  I guess that’s a pretty good timeline and I suppose that I’m impatient and expected to feel good and be back in action in half that time.  My new knee feels very strong and sturdy.  Yes, there is still pain, but it’s tolerable.  I took a long walk 2 days ago as part of rehab and it felt therapeutic.  I can’t wait to be back walking on a regular basis.  Abbie the jack russell can’t wait either.

The most surprising part of the surgery was how violently my RA acted up.  I really wasn’t expecting that.  I control that damn disease and it does what I tell it!! Usually.  Not so post surgery.  Of course the biologic that I am on, Xeljanz ER (or is it XR) is a daily pill.  Which means that it leaves your system each day, unlike Enbrel which stays in your system for a bit.  Once I stopped taking it prior to surgery, without any residual in my system, the RA flared.  Post surgery the RA continued to rage through my system and was the worst part of recovery.  The pain of the new knee was nothing compared to the pain of  RA.  Interesting to have a point of reference.

I have found a bit of success by upping my daily dose of prednisone, but that means I don’t sleep until 3am.  My time table is a bit off.  However, I backed down a bit this morning on the prednisone and I’m trying to return to my “normal” life.  Which is funny because my friend said to me this morning that if I became normal, she wouldn’t recognize me.  But I’m back sleeping up a flight of stairs in my bedroom, and no more riser on the toilet.  I’ve been working from home, but am going to head to the office tomorrow.  Life is waiting for me to resume.

RA flare from hell

So I know that trauma to your system can trigger an RA Flare.  A friend of mine recently had a total knee replacement and several weeks later had a painful episode of gout.  I read about that on line and told him that it was due to his surgery – it triggered the gout.

Not sure why it took me so long to look inward and recognize that the trauma of surgery was causing my flare.  I kept thinking I would be better tomorrow.  I did stop the RA meds for almost a month and have been back on them for 2 weeks, but the pain and inflammation seems to get worse every day.  Yesterday afternoon and evening I cried more than I want to admit I did.  I couldn’t get comfortable.  Sleep?  Barely a wink.  My restless legs were all over the place in bed last night.

This morning I cried again and could see how swollen the non surgical knee was.  I thought about my friend with the gout.  I thought about last summer when I was changing biologics, and took a couple prednisone tapers which honestly helped.  I’d been taking 2.5 mg of prednisone per day which is obviously not enough to beat the rheumatoid back.  My brain was thinking I should call my rheumatologist, but I don’t want to whine.  Besides, he’s going to suggest a prednisone taper.  So as much as I hated doing it, I took another dose to bring today’s daily total to 10mg.

It’s been about 3 hours and I definitely feel better already.  I have more mobility in the knee and much less pain.  Most likely I won’t sleep much again last night, but it’s a trade off I’m willing to try.  Besides, we turn the clock ahead tonite, so there’s one less hour to toss and turn.

 

 

Staples out, rehab continues

tkn

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.