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.

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.

Almost 2 weeks post op

Tomorrow will be 2 weeks post op for me.  It’s gone by quickly even though at times the minutes seem to be like hours.  Overall I’m doing well.  Progressing.  The surgically repaired knee is now my Good Knee.  My Strong Knee.  It’s stable and sturdy and feels good to walk on.  To that end, I walk mostly unaided these days.  I’ll use my cane overnight or for the first few steps in the morning, but otherwise it is not necessary.

My hurdle has been the other knee which no doubt will be replaced in the future.  Being off the RA meds since the beginning of February has caused the expected flare.  In my hands, wrists and the other knee.  The other knee formerly known as my good knee.  The pain has caused me to cry for a few moments most days.  I get overwhelmed, tired, behind on pain meds or just feel a bit sorry for myself.  I sob for a few moments and then rally.  Because that’s what RA has taught me to do.

I was supposed to stay off the RA meds until after the staples were removed, but I will confess to starting the methotrexate 4 days ago, and the Xeljanz 2 days ago.  The swelling in the new knee has diminished, my physical therapist says I’m doing great – I did climb a set of stairs yesterday and walked down the street and back up (it’s a hill).  Today is the first morning I’ve not cried since surgery.  Yes, I was stiff and sore, but the pain seems manageable and the RA flare is being extinguished.

I’ve had incredible support from Mr. Phat.  I couldn’t have gone through this without him.  He’s held my hand, cooked meals for me, and most importantly is my Iceman.  He keeps my icing mechanism full – he says I have a $4 a day ice habit and we’re not even making margueritas.  My parents drove down over the weekend for a visit which proves that you can be 55, but you’re still a daughter.  Mom needed to see for her own eyes that I was doing well.  I’ve had tremendous support from my friends and colleagues at work, which has helped me go through this challenge.  And my ski group, Team Cannon, left for the annual trip to Switzerland over the weekend.  I know that my spirit went with them.

Stay tuned for more updates.

In Like a Lamb

March definitely came in like a lamb, compared to the last few months.  Since November I had gotten sick in 4 consecutive months.  I think it was actually the same infection that kept rearing it’s head.  Finally, the 4th course of antibiotics, coupled with a new allergy medication seems to have done the trick.  I’ve been healthy for about 5 weeks.

I did stop the injectible RA meds for 6 weeks.  Over the past few years I’ve wondered how well they really work.  I found out.  By the long weekend in February my wrists hurt enough to need ice, my knees hurt like days of years ago, pain meds barely touched it and exhaustion ruled.  I started back on the President’s holiday with an injection of Enbrel.  The following Monday I did an injection of Methotrexate and this morning was Enbrel.  I thought I’d try alternating weeks rather than taking both each week.  Perhaps too much immune suppression lowered my defenses too much.  So far so good.

Finally I got a chance this past weekend to try out the gear I purchased:

20160229_144504

And it was a beautiful weekend to do so!!  This is Mount Lafayette, across from Cannon Mt20160306_083551 [141181]

This Picture is from the Mittersill Chair looking over to Mt. Lafayette. 20160306_100725 [134286]

And here’s a selfie – not a great picture, but I was having a ball!!!

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The season isn’t going to last too long in New England this year, so I gotta ski while the skiing’s good.  Thankfully my joints feel good enough to be out there.

 

Frustration

I follow a number of blogs by individuals with chronic health issues, most of them with Rheumatoid Disease like me.  Seems to be a common theme of late – we are all frustrated by our health, our doctor’s and their offices and the medical insurance community.

For me, the frustration is that I’ve been unable to fully get rid of this upper respiratory infection that I’ve had on and off since Halloween.  I would get well enough to think it was behind me and I would resume my normal activities and then WHAM, it would knock me on my butt again.  This happened 4 times, and this past week when the fatigue and sore throat returned I called my PCP and got in to see him that day.  I expressed my frustration and my fear of constant anti biotics, but unfortunately due to my anatomy the bacteria gets stuck in the sinuses and it seems strong anti biotics are the only way to rid my body of the gunk.

He prescriped a stronger anti biotic and for a longer period of time.  He also prescribed Singulair pills at night.  I need another script like I need a whole in the head, but he said that this helps the underlying allergy issue (which I have) and maybe it will help what ails me.

It gave me the chance to discuss my ENT and Rheum Doc visits that I had in the past week as well.  The ENT had gotten the Catscan results of my sinuses.  The passages looked clear, with one exception and therefore he didn’t think I needed sinus surgery.  However, there is still the large bone tumor that resides in my sinuses and that could be part of the trouble.  We decided that I should have a specialist look at it to see if there is a way to extract it.  I haven’t seen a specialist in 20 years and at that time, the surgery required wouldn’t be pretty.  The ENT also reiterated getting off the Enbrel.

My Rheum doc said my meds were fine, everything was fine on his end.  He doesn’t see a lot of patients that seem bothered by sinus infections who are on Enbrel.  He said he doesn’t think that the Enbrel is causing the infections.  However, he agreed that the less medication I take, the better it is and perhaps spread out the injections and see how I do.

So I’m stretching out the Enbrel, and going about 10 days in between methotrexate injections, taking Singulair and a steriod nasal spray while using the neti pot daily.  Hopefully I will be headed down a better road shortly because I love winter!!!