Spring!!!

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!!!

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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!!!

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Sometimes being a Spoonie can be OK!!!

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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.

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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 – Hobbies

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I must say that I have enjoyed #RABlog week.  Not only has it made me consistently write, but I have also consistently read other blogs.  Some that I read regularly and also some new ones that I will definitely read going forward.  Day 4 is about Hobbies.  This year that’s a tough one for me to talk about.

My number one hobby for a long time has been Skiing.  Snow Skiing.  In fact, my parents live down the street from my home ski area and Mom refers to me as “Ski Daughter” to her neighbors and friends.  I have a season pass every year at that mountain where I ski most weekends and some weekdays.  We also have a group that regularly goes to Switzerland for a 10 day trip.  I had planned to go in March, 2017 but had to back out because of my Knee Replacements.  I also had to turn in my season pass for a refund.  This coming winter I’m reluctant to do much skiing, and any I do will be done late in the season, on a mid week day where the sun in shining.  Just enough to take a few steps to know that I can do it again.  To this end, I’ve returned to regular workout with my personal trainer.  We are working on my legs.

Probably my number 2 hobby is gardening.  Sadly, that has been neglected this year as well.  I wasn’t well enough to garden until the middle of August so the weeds took over.  Hopefully next year I will be up to doing some gardening because I think of it as soul work.  When you’re hands are in the dirt and you’re making your world a little more beautiful, you are definitely feeding your soul.

I wouldn’t say that golf is a hobby.  As a sports junkie, I’ve watched it for years and started playing about 10 years ago.  Sadly, I’ve not been able to golf last season or this season although I’m feeling ready to go out and swing a club.  But I like to do it with Mr. Phat because he’s a patient teacher, and his health has not allowed him to golf this summer.  Perhaps next year we can go back to a weekly “nine & dine” round.

The only hobbies that I’ve participated in this year would be the watching of sports on TV and a little bit of reading.  So that’s not saying much.

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Here’s hoping for a better Hobby year in 2018!!!

RA Blog Week 2017 – Partners

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Where would we be without our partners?  What a great question.  Today’s #RABlog week post is about our partners.  I had almost 10 years of living with RA when I met my husband so I had a groove going.  He knew I had a medical hiccup but it didn’t phase him.  He had nursed his sick wive for 4 years before she passed, so he was well versed on illness.  And heck, I didn’t look sick!  I went to the gym, walked his dog and skied.

Four months into our relationship I had a terrible ski accident and he took care of me for the next 4 months at his house.  But I came back better than ever and we spent a number of years being very busy with life, and work.  We skied every winter, including 5 trips with our group to Europe to ski.

March of 2016 was when I went downhill a bit – my knees were slowly falling apart.  Mr. Phat, as I call him, drove me to doctor visits when I couldn’t drive, he picked up meds for me and he would be the one to take the stairs to the basement.  It never phased him, he never groaned or said “I have to go down again.”  He willingly did anything that I couldn’t.

The support that I have consistently received from him continued this year when I decided to have my knee replaced.  I underestimated the pain I would experience due to the stoppage of my RA meds for a month around the surgery.  I cried a lot of mornings and he would take care of me with ice packs, coffee, food and meds.  He took care of anything that needed to be taken care of.   A few weeks after the first total knee replacement, I confidently decided that I wanted to have the other knee replaced.  So eleven weeks after the first surgery, I had the second surgery.  Even when I ended up back in the hospital 3 weeks after surgery for some bleeding, he was calm, cool and took care of my every need.

Not sure how I got so lucky.  I always say that you get what you give.  We both put each other first which is what I believe a partnership should be.  I don’t think I could have gone through two surgeries so close together without him.  We are blessed.

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.

Saturday musings

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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.