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.

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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.

Happy 4th!

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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!!

Summer 2016

Once again summer has gone fast!!! It always does, doesn’t it?  Considering I haven’t felt my best, it’s been a good summer.  My RA flare is continuing and I feel it every morning when waking up.  The stiffness in my fingers and thumbs is real. And painful.  My knees hurt as well, although they seem a bit better than earlier this summer.

Acupuncture?  I’ve had 3 sessions and I’m not sure that’s what enabled me to walk all around Chicago last week for 5 days, or if it was sheer determination and stubborness.  We walked to dinner 4 nights, once even for 1.5 miles.  I would start the day with pain meds and might add another in the afternoon.  I walked slower than in past trips, and was more deliberate in my steps, but I walked nonetheless.

Cocktails and snacks with two nieces, dinner with good friends one night and 2 business dinners with Mr. Phat and lunch with some gal pals kept me busy for 5 days.

I have a few more acupuncture visits that I’ve paid for and will decide at a future date whether to continue.  My primary thoughts at this time is when is it time to change biologics?  I have been on Enbrel for 8 years.  I was in remission for most of that time, but no longer.  Is it time to explore options?  That’s what’s facing me going forward.  I’ve been trying to be patient to see if the flare resolves itself because as far as biologics go, the devil I know is better than the one I don’t know.  But when is it time to switch?

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Here’s Mr. Phat and I taking selfies with the kids on Molly’s 2nd birthday this week.

 

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Here’s lunch along the river in Chicago one afternoon with old friends.  One of which has RA so we were able to share strategies.

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This is from yesterday.  We spent the afternoon at the Sergio Franchi Memorial concert in Stonington CT.  What a fun event!!

Truth is, I don’t have much to complain about.  I’m doing OK.  RA be damned.

Knees and Caterpillars

Well it appears that the cortisone shot I got in my left knee during March has worn off. The pain  has become pretty intolerable and yesterday I did too much housework and then went to dinner and a concert last night so my knee was throbbing when I got home and interrupted my sleep.  I visited my primary care physician this week who said that the knee is pretty bad. I have a cyst in my knee.  He didn’t elaborate but I’m pretty sure it’s a baker’s cyst because I’m a perfect candidate for one.  He said I need to get a new knee and I promised I would, but needed about 8 months to get through a busy spell.

I did speak to the rheumy’s office on Friday and they are going to arrange for an injection of sodium hyaluronate i.e. Supartz or Synvisc.  I have had both in my right knee and it’s been holding up very well.  I am hoping to get similar relief in the left knee at least until next spring and I’m gearing up for a knee replacement in the spring.  Hopefully it works because the pain is incredible and I’ve been taking 2 – 3 vicodins per day, which I guess for acute pain isn’t all that bad, but is a no no for chronic pain.gypsy-moth-caterpillar

We are having an influx of gypsy moth caterpillars where I live in RI.  The caterpillars showed up en mass almost 2 weeks ago – they were EVERYWHERE.  They crawled up the house into the eaves, they climbed up the trees and they were on the bikepath.  Now they are munching and leaving little clusters of leaf debris along with their excrement.  Many of the trees are bare and they chewed a beautiful crabapple tree in our back yard.  We drove to dinner and a show last night through the woods and there were areas where there were no leaves at all.

It rained last night which just made it more of a mess – Mr. Phat used to blower in the yard yesterday to get rid of everything and today it’s back again.  I’m told that they will be here until about July 4th which is discouraging.  The devastation to the forests in this area could be pretty significant.

So I’m finishing up this post so I can go vacuum the kitchen area and the front door again because you can’t help bringing in a bit of crap when you step inside.  Happy Sunday Folks.

Purple Rain

Fentanyl.  Prince died from an accidental overdoes of Fentanyl.  I was afraid that something like this was going to be the outcome.  Fentanyl is the strongest opioid approved for use in the US.  It’s 50 – 100 times more potent than morphine.  That’s a very strong drug that he was self administering.  I read that as little as a quarter-milligram of fentanyl can be fatal. To appreciate how tiny an amount that is, consider that a standard aspirin tablet is 325 milligrams — 1,300 times bigger. For a man that weighed 112 pounds at his time of death, he didn’t need much to kill himself.

I don’t know what it means because we don’t know where he had gotten the drug – whether it was prescribed or illegal, but Prince had a problem.  Seemed that it started with his hips which were worn down from years of performing in high heels.  He had a scar on one hip, but I’ve never been able to confirm if he had a replacement hip or just hip surgery.  It seems apparent that he had chronic, debilitating pain and must have become dependent on stronger and stronger meds along the way.

The answer isn’t stopping people from receiving medications for their chronic pain.  Rather, meds need to be part of whole body approach to chronic pain – it should include perhaps eastern style treatments such as reiki, massage or accupuncture, relaxation techniques as well as properly administered opioids.  The people in Prince’s circle seemed to know that he was in a downward spiral because they had to divert his plane after a show for a dose of narcan, and they had reached out to some doctors for help. Reports said that Prince was going through opioid withdrawal.

I’m just so sad to see someone from my youth and generation gone too soon due to misuse of opioids – and very strong ones.  Everytime this happens, it puts a black mark on opioids which is tough because when used properly they can help people with chronic pain live a more normal life.  RIP Prince.