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.

Happy Memorial Day

Let us not forget what the day/weekend is about.  It’s to honor those that gave the ultimate sacrifice for our freedom.  Freedom isn’t free, and we need to remember that.

I didn’t intend to do a post this morning – I’m busy prepping for family dinner later on and I feel like I don’t have much to say.  My RA is in check and I’m going about my life with little interruptions from pain and maybe an occassional tylenol.  Mr. Phat is very slowly recovering from his spinal fusion 10 weeks ago.  If he does too much, it sets his nerves spiraling and then he goes backwards.  but he’s learning to moderate and  count his spoons.

What triggered me to write was that I have a letter from  Blue Cross asking about an ambulance ride I took last year and they were wondering if there was a third party that may have been responsible.  They’re looking to subrogate the expenses (that’s a term we use in insurance all the time).

The ambulance ride was because of an auto immune response that I had in my two week old Knee  replacement.  The joint filled with blood and it was by far the most excrutiating pain that I have ever felt.  My husband couldn’t move me to take me to the hospital so he did call the ambulance.  The date this happened?  May 27, 2017.  One year ago today.  So I’m happy to commemorate this Memorial Day by not spending a night in the hospital and to be able to spread mulch and help Mr. Phat with dinner for 10.

I’m also fortunate to have my 80+ year old parents visiting this weekend.  Mom went to her 60th reunion at Brown University yesterday.  She caught up with old friends and walked around the campus and the east side of Providence.

So thank you to those who have served, to give us the Freedom to be.  Happy Memorial Day.



Happy Spring.  Just when we thought it wasn’t going to show it’s face, it comes.  And this weekend has been a beautiful weekend for being outside and working in the yard.  Naturally this morning I woke to a very painful back, but I took my celebrex,  some tylenol, and  started moving. I managed to make it back outside again, but didn’t do work that strained my back.

Mr. made his appearances outside as well – he washed our two cars and moved around a bit.  He is coming along from his spinal fusion.  His left leg was such a problem before surgery but he indicates that it’s much better and that is visible because he no longer drags his left leg when he walks.  He has a long way to go still and he’s trying to start getting back into the activities of his life.  I had taken him to a meeting this week and on the way home he mentioned how fatigued he was and that he was tired of being tired.  So I told him about being a Spoonie .  I know that my readers who have RA or another chronic illness are very familiar with the Spoon Theory and work hard at counting your spoons as I do. He listened to me and he didn’t think I was nuts, he said that he’d never heard it put that way, but it make perfect sense.  So now we are both Spoonies!!!

After missing last year’s ski season and most of this years ski season, I did manage to get to NH and skied 3 mornings.  It was pretty incredible – almost seemed like an outer body experience because my knees didn’t hurt!!!  I couldn’t believe that this was me skiing with NO pain at all.  I’ve skied with pain since 2000, so it was pretty incredible!!!

skiing 2018

This is part of the motley crew that I ski with – that’s me in the white.  As you can see, we’re not always a uniform group!!!  So I’m looking forward to next season and we have Switzerland in our sights.

Lastly I had a terrific lunch 3 weeks ago when I met Mary Ann of RA Style & Flare . We met through our blogs last year and discovered that we lived near one another, so we had a great lunch together.  I can’t tell you how comforting it is to meet someone who really knows what you feel and go through.  We definitely will be getting together again, but not until after Mary Ann has some surgery this week.  I’m wishing her good luck and am sure she will come through with Flying colors!!!

lunch with Mary Ann

Sometimes being a Spoonie can be OK!!!

Happy Easter

I’m not a very religious person but recognize that Easter is a time for renewal.  Happy Renewal to you, my readers.

How am I doing with all that’s gone on around me? It hasn’t been easy, but I’ve gotten it done.  Much the same way as I always have. By pushing every day.  My wrists hurt, my left shoulder barks at me every minute of every day. I’m going to get a cortisone shot next visit to the doctor.  I don’t want to have shoulder replacement surgery right now.

And Mr? He’s coming along and we see improvements every day.  He’s graduated mostly to a cane from his walker.  His pain is under control with 2 or 3 pain meds per day and Tylenol in between.  His spinal fusion involved 6 screws, 3 bars and a cage.  We will never get through  airport security easily again.

Wishing you all a nice day however you celebrate Easter or Passover.

Nursing 101. Or Mom 101

Wow.  I have learned alot in the past 10 days.  I always had respect for parents, and single parents specifically.  I had a good lesson this week on motherhood and nursing.

Mr. Phat had a spinal fusion last week.  We do not know exactly the specifics yet but there were at least 5 degenerative discs in the lumbar/sacroiliac area of his lower back.

It took a year to find the degenerative disc diagnosis.  What a frustrating medical tour exploring ALS, MS, Lyme Disease.  But we got here and fortunately were hooked up with the Chief of Spine surgery in the big hospital in our state.  The doctor said that it was ugly but he fixed everything and expects an excellent, but long, recovery.

There is an 8 inch scar down his back.  He had some seriously compressed nerves and several bulging discs.  No wonder he had trouble with stability and walking in general, with painful nerve tingling and numbness.

He preferred to come home over going to rehab and I agreed, knowing he would heal better in his home environment.  He came home Monday night and I never imagined how difficult it would be.  I’ve been the nurse, the maid, the chef, the receptionist and hauled wood for our wood stove because Mr. is always cold.

I don’t know how to dress someone.  Mr. Even had to explain a few things to me and said that it’s evident I was never a mom.  Or a candy striper.

And it’s been difficult and frustrating for Mr. He’s independent and needing to rely on someone for everything is not easy for him.  He’s in constant pain and has limited mobility.  His rehab is going to be lengthy.  But the light at the end of the tunnel gets brighter every day.






Good Morning

Long weekend for us for the President’s day holiday.  So happy to have the extra day to catch up on some chores, catch up on some rest and catch up on my blog.  It’s been a long time since I have updated my blog.  Mostly good because overall I feel OK.  The knees feels great.  Strong.  I walk alot.  I have been remiss at the gym, but am ready to head back there.

Seems that since my knees were replaced, RA has moved to other joints.  My right wrist hurts constantly as does my left shoulder.  The meds help, but right now they don’t seem to alleviate the pain as well as in the past.

There are other factors here at play.  I haven’t been as diligent with my eating as I should be.  Also, we’ve been playing doctor with Mr. Phat to try and learn what was ailing him.  We visited so many doctors and specialists, trying to determine what was causing his loss of mobility and severe pain.  Finally we learned that he had degenerative disc disease quite badly in his spine.  We even saw a neurologist who missed it.  He confirmed it wasn’t MS or ALS, but couldn’t find the disc degeneration.  It has been a frustrating 8 months.  We thought lyme disease, and then he had a bout with heart failure and had a hospital stay as a result and now this.  He is having surgery next month and so we hope there is a light at the end of the tunnel.  It’s a long tunnel, but there’s a light.

Stress.  Probably the worst thing for RA pain.  And yes, the stress has crawled into my joints.  I keep reminding myself that this too shall pass.  And also it’s very nice that we were able to attend a dear niece’s wedding this weekend.  We still can get all fancied up and forget how much pain we are in.


2017 Health Insurance Tally



I suppose that I have no reason to really complain.  But my wallet is a bit tight this winter and I discovered some things that might help explain it.  I had to follow up with Blue Cross yesterday for an invoice I got for a recent doctor visit copay.  I thought that I had hit my maximum out of pocket costs for the year since one doctor had sent me a check for $25 to cover an overpayment.  I told the doctor’s office that when she asked for a $40 copay.  Well shortly after the visit I got the invoice.  I learned that the billing department didn’t check with Blue Cross, but rather just billed the copay.  Blue Cross called the billing service to tell them that I didn’t owe it.  That actually got me a bit angry that the billing department didn’t even check with Blue Cross, but they just invoiced me.  How many people have paid medical bills that they don’t owe?

In the course of my discussion with Blue Cross, they indicated that our maximum out of pocket was $13,700 and I had actually overpaid it by $200.  Of course Blue Cross doesn’t have that money they said, I have to wait for the doctors offices to reimbursement.

I won’t hold my breath waiting for THAT to happen!!

Additionally, I pay $2422 annually toward my health insurance.  I participate in all the office wellness requirements which reduced my contributions.  They also do help with the $5000 per person deductible, so I didn’t pay all of that $13,900 out of my pocket.  In addition, it just took Mr. Phat 29 days to get approval for a test that 3 doctors and one physician’s assistant want to see the results of to try to diagnose what’s causing him neurological problems.  So we will be most likely starting the year facing a $5000 deductible.

We are fortunate to have great health coverage and so I usually try not to complain, but this year has hit the wallet more than normal.

Hoping that 2018 will bring better health for us and for all of you!!!