Sunday, Funday

Morning and Happy Father’s Day.  It’s a beautiful day here in New England and after working hard yesterday in the yard, Mr. Phat and I are looking for a day of relaxing by the coast.  We both could use a day of down time.  He’s still recovering from his spinal fusion and finally is experiencing some relief from the pain.  He’s got a long way to go but is moving in the right direction.

I had an extra busy winter and spring with taking care of him, and working a new position at my office that I love, but it keeping me VERY busy.  It’s fast paced, high energy and has pushed me back into sales in a satisfying way.

I also spear headed a reunion weekend at my college in Maine which was attended by almost 100 people from my class and 1500 from all classes.  It was a very successful event and I made it home, full of nostalgia and love.  The next night I started with the sore throat and fever and by morning was feeling lousy.  Just what I didn’t need, was to take 2 days off from work, but I had no choice.

But, there is a huge difference for me now, than there was with my prior medication regimen.  I loved Enbrel, but I would get very sick, be down for 7 – 10 days, and need anti biotics to clear my sinuses and lungs.

With Xeljanz XR, it’s a daily pill, so it basically leaves your body each day.  When I feel punk, I pass on taking it, helping my immune system work on the germs.  The enbrel stayed in my system for a week or more, so unless I got symptoms on the day I was to inject, my immune system was too compromised to fight the bacteria.  My ENT told me several years ago that it was the worst drug for my sinuses, but it suppressed my RA so well, what choice did I have?

This week, I got sick Monday night and didn’t inject the MTX either.  I skipped Xeljanz XR for a couple of days and managed to get to work after 2 days sick – which is new and different for me.  (ok, a little more joint pain, but since I was laying down, it didn’t really matter)

I was really bummed when Enbrel stopped working, but in hindsight, I have found benefits of my new drug regimen.  Wishing all of you health and happiness.

Advertisements

Annual Fall Celebrations

Good morning friends.  Hope your Thanksgiving was pleasant and peaceful.  We had a busy weekend with family and were happy on Sunday afternoon to sit and watch football.  However, by Monday morning it was obvious that I needed to see my doctor because I’d been coughing for 10 days and it wasn’t getting better.  He diagnosed my annual fall upper respiratory infection with bronchitis.  I’m home on the couch with my Zpak and cough syrup with codeine.  Still coughing but maybe a bit better.

We took our annual trip to Chicago this fall and I was proud of my steps on one of the days.  7.45 miles with a knapsack on my back.

Screenshot_20171128-100958

I walked the whole city that day and not only did it feel good, I felt great the next day as well.  So I think that the knees are healing very nicely.  Ski season opened over the weekend (another fall annual tradition), and I hope to hit the easy slopes late February for some skiing.

Mr. Phat’s heart has strengthened and he’s feeling better in that respect.  Two heart procedures, an extended hospital stay and new medications and he’s doing very well.  However, he still has nerve pain on the left side of his body.  We thought he had Lyme Disease, but now we’re not so sure.  We’re thinking it’s some degenerative discs in his neck and back.  We’ve seen a pain management specialist and see a spine specialist later this week.  Seems we are finally on the right road for him after many many months of searching.  Let’s hope.

 

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.

RA Blog Week 2017 – Mental Health & Ra

BANNER2017

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!!