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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RA Blog Week 2017 – Mental Health & Ra

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I’m participating in RABlog week this year and I’m very excited about it.  For 5 days there are select topics for each day with a couple of wild card topics.  One of which I’m going to definitely use.

Today is about mental health and RA.  My RA symptoms started 20 years ago at a time when my mental health was at it lowest.  Life had become oppressive to me – my boss had a nervous breakdown and four months later my then husband had an industrial accident.  I spent a year racing around caring for my boss’s clients while taking care of my husband, his injury and the workers compensation court process.  This took a toll on me and one day I realized that I was ready to drive my car into a tree.  I didn’t recognize what I was going through, but fortunately my boss did, having been there.

I was fortunate to connect with a therapist immediately.  She helped me understand depression and stress and the connection.  I also began taking an anti depressant.  Within a year I started having the first symptoms of RA.

That was 20 years ago.  3 anti depressant medications, 4 biologics since then and I’m in a good place.  But I recognize that stress and chronic pain have a huge impact on your mental health.  Perhaps I’m weak for saying that I will stay on an anti depressant until death, but I feel that way.

Earlier this year I went through 2 total knee replacements, 11 weeks apart.  Going through it was long, although I’m happy that it’s behind me.  I did have a few days when I felt the old demon of depression knocking.  Time, and some coping skills, helped me move on from that point.  But it was just enough to remind me how delicate the balance is between chronic illness and mental health.

Four Month Follow up

Good Morning.  Happy Sunday.  It’s a beautiful day in New England which makes me feel a bit guilty for all the hurricane ravaged communities that are trying to bail themselves out.  Or for people who lost everything.  I can’t imagine.  I sell insurance for a living and only once did I have a claim where people lost everything and it’s heart breaking.

I thought I’d give you a run down of my final check up with my orthopedic surgeon.  It was exactly four months from the date of my second knee surgery.  He was happy that I had full range of motion in both knees.  He also said a couple of interesting things.  He said that some people with 2 replacement knees have trouble walking down the stairs normally.  Which is something I have issue with but I am not sure if my brain is holding me back or the movement itself.  I am going to try to figure that out.  He also said that most people with knee replacements don’t get on their knees.  Well I observed my father get on his knees in July and he’s had 3 sets of replacement knees (long story).  That alone gave me the desire to not be outdone by the old man.

I started training again with my personal trainer three weeks ago.  On the first day, she asked me if there was something I hadn’t done that I wanted to. When I asked her to help me get on my knees, she knew exactly what to do.  She put down a weight bench that I could use to lean on and I got on my knees next to the bench and was able to pull myself up.  While it wasn’t exactly comfortable on my knees, it wasn’t painful.  I felt accomplished and when I explained that to my surgeon he was so very impressed and stated that I must be an outlier.  And I believe that I’m an RA outlier.  I try hard to live my life with as little interruption from the chronic disease that I’ve had for 20 years.

Thanks goes out to my dad for giving me the courage to go through all of this.  It was his mother who had RA and never complained.  I also have to thank my bitchin’ personal trainer Cathy.  I love working with her so much and she gives me the courage always to keep reaching for the brass ring.  She said the day I walked back into the gym after surgery for the first time was the only time she’d seen me with a normal gait.  She said I had a confidence she hasn’t ever seen.

Music to my ears.

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.

Happy 4th!

4th of july 2

Happy 4th of July Everyone.  I was fortunate enough to have a 4 day weekend since our company closed yesterday.  What a terrific time to catch up on rest and pay a visit to my parents and some friends in NH.  I hadn’t been there in 3 months, which is a long time for me to be away.  We had a nice dinner with Mom and Dad one evening, then we had a dinner party to attend with 10 ski friends which was especially nice.  Mr. Phat and I have both felt a little disconnected from our ski friends.  Hopefully we can be able to participate in some late season spring skiing next year.

I’m 8 weeks and 1 day past the second surgery.  Yes, I’m very slowly getting better but I still have brief episodes of severe pain in the knee and ankle.  The stiffness is subsiding a bit, but I’m still frustrated.  And I probably shouldn’t be.  I just took the dog on a half mile walk.  I’m not sure that’s common for someone at my stage of knee replacement.  I’m trying to move more every day.

My father has had his knees replaced.  Several times.  He did tell me that the pain will come and go for a while with seemingly no reason why it hurts.  That helps a bit but not a lot.  I want to be better now.

So speaking of movement, I’m going to go out and pull some weeds in the yard for a bit.  They’ve really taken over and I’ve been slacking.

Enjoy your day!!

Rainy Saturday

The summer rain is falling pretty hard this morning.  I hear it on the skylights.  I’m very happy for the rain because I don’t feel like I have to rush and do anything.  Rather I can lounge on the couch over coffee with my computer and give you an update on my knee and my RA and my weight.  After all, this is a blog that started about an overweight, 50 something woman with RA.

After the pity party post from 2 weeks ago, I did rally.  I always rally.  As a matter of fact, one of these days I’m not going to be able to rally, and I wonder what happens then.  I’m back at work and it’s exhausting and painful, but I manage to get through most of the day.  The knee seemed to be at a standstill for a time, and as a matter of fact last week one morning it got excrutiatingly painful again and I went to see the doctor.  I could barely walk into his office.  It was 30 minutes before he could see me in which time the pain and inflammation subsided a bit.  He told me that it was going to take time and patience and maybe I was doing too much and had gone back to work too soon.

Well you tell that to my clients, but I did listen to him and I’ve moderated a bit.  I make sure to elevate and ice my knee regularly.  I’ve worn the compression sock occassionally which helps.  I also had a huge revelation.  Because of the pain and discomfort and my inability to sleep I’d been taking 2 advil pm’s at night.  Which is a blood thinner, so I wasn’t helping my situation in the least by doing that.  The morning I ended up back in his office I had also taken 2mg of Prednisone to put the RA at bay and I believe that contributed to the pain and inflammation that morning.

I’m walking about 5000 steps each day, trying to get the right blend of activity and rest.  I’ve started doing mini squats to help strengthen my thighs.  I swear that some day soon I’m going to wake up and feel like I did before this bleeding episode.

On a lighter, funnier note, this week was wellness day at my office.  My company participates in wellness programs at work and in order to get the preferred co pay levels, I am required to participate.  I have a Virgin Pulse app on my phone that I track certain items with, I do competitions with coworkers and read helpful hints each morning.  Participating employees must complete a health screening either at their doctor’s office or at one of the screening days at the office.  So I did that this week.  My glucose and cholesterol were great!! My blood pressure was a tad high but I was in pain that morning.  However, I’ve lost 20 pounds since last year.  I knew I had lost weight, but didn’t know how much.  I was pretty psyched about that.  However, the BMI chart states that I am still obese.

Sigh.  I can’t win.  But perhaps I can lose 20 more by next year and get below 30 for my BMI.

Have a nice week everyone.  Stay strong and positive.

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.