Saturday musings

roomba

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.

Personal Training

I haven’t written about my training, or my trainer in quite a while.  Cathy was very gentle and kind with me through this summer as I went through my RA Flare from Hell.  I still made it most weeks, but we didn’t do much that was significant – some stretching and a little weight lifting and then she would massage or use her tiger tail on me, which helps get the kinks out and just made a suffering gal feel better.  She was always empathetic with me and I don’t think she thought I exaggerated my pain.

Now that I’ve changed meds and hopefully am feeling better, she has started gently moving toward more aggressive workouts.  Well gently until this past week when she whipped my butt!!  We used kettlebells and I worked like I haven’t worked in almost a year.

Finally I yelled “Uncle.”

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I feel fortunate that I have the time and expense to devote to my weekly training sessions.  I think they help me immensely with understand that I don’t have as many limitations as it appears.  She pushes me to work beyond what my head may say I can do.  She works on my balance alot and I’m incredibly thankful for all the time we spend together.  Especially this weekend when I spent both days up and down a ladder painting our kitchen that is undergoing renovations.

I bitch and swear at her, but Cathy is truly awesome.

 

TKR

Yes.  Total Knee Replacement.  I visited my ortho this week and learned that instead of needing one new knee, I need two.  The Doc told me in 2009 that I needed a new right knee.  So far I’ve managed my life without getting it done.  Now he told me that the left knee has no cartilage and is also bone on bone.

With RA,  the synovial membrane that surrounds the knee joint becomes inflamed and thickens.  Over time, the resulting chronic inflammation will damage the cartilage.  This will cause cartilage loss, pain, and stiffness.  Then there is OA (osteoarthritis) where as you age, the cartilage cushion that protects the knee will soften and and wear and this causes pain and stiffness.

Another factor is trauma.   I’ve been involved in athletics since I was young and I always had bruised or skinned knees.  I had my share of falls while skiing or hiking.  I fell while biking.  I recently got bifocals and took 2 really hard falls on my knees and hips.  So I think that all three of these factors – RA, OA and Trauma – have contributed to my current knee situation.

So I’m continuing on my normal pace – which is typically warp speed until such time as the pain and discomfort is bad enough that it impacts my life.  Then we will discuss the first knee replacement.  As the doctor said, I’m highly functioning considering the state of my knees, so there’s no reason to rush.  He suggested that when my world narrows is when I need to address surgery.

Until that time, I’m trying to concentrate a bit more on my eating and exercising.  I have been the same weight for 5 years.  Yeah, just about since I started this Blog about trying to lose weight after turning 50.  So I think that I’ve failed!!  Miserably.  I’m doubling down on my efforts because other than my weight and my RA, I’m very healthy.  I’d like to stay that way.

National Pain Report

So I’ve been following the National Pain Report for several months and I like what they’re reporting.  They’re definitely an advocate for chronic pain patients.   The  national pain report published a blog post  today which critiqued last nights AC360  Town Meeting by demonstrating how the show stigmatized those with chronic pain.  The founder and head of the US Pain Foundation who wrote this particular blog posts correctly states that we need to advocate for better solutions that are covered under our medical care.  He asked readers to write to the 2 producers of the show last and try to show how we are real people.

Which I did.  Even though I didn’t see the show, I did want to say that I’m a 55 year old professional woman with a busy job and life.  I’ve had RA for about 20 years and I function very well.  I see a personal trainer weekly (paid out of my pocket) and I used to get massages monthly, but can’t pay both for massages and the personal trainer.  But damn a massage would feel good.  My hot tub is a great tool but it’s not working and we don’t want to throw another $600 to again fix the same problem on a 10 year old hot tub.

Pain meds?   I told the producers that I take between 6 – 10 per month on average.  That’s all.  That’s all I’ve ever taken once I got rheumatoid under control.  I saw a rheumatologist for years who lost his license to practice and his livelihood because he got addicted to pain meds.  I need an occassional pill to take away the pain so that I can be a productive person.  I’m single and responsible for myself.  If I can’t work, I don’t have income.  I refuse to be disabled, so there are days that I need to push on and meds are part of my war chest for those days.   But I’m not going to abuse them.  It’s been 18 years and I’ve not done it yet – I’m not going to do it going forward.

So enough about pain and opioids, although I’ve had my share of pain the past few weeks.  I finally went and had my painful knee xrayed and there’s a lot of osteo arthritis in there.  Not really much of a surprise is it?  I have RA, which deteriorates joints.  I’m 55.  Female. Overweight. Active.  Not Graceful.  Or Gentle.  I fall.  My knees are toast.  Seeing the ortho next week for some discussion.  In the meantime I’m still trying to walk and icing my knee and trying to take pills only when it’s unbearable.

 

Steps

I’ve been mostly a downer lately on my blog.  Talking about RA Flares, cortisone shots, medications, including pain meds, and sinuses.  It was a tough winter for me, but all in all, I managed.  I can afford my health insurance and my medications.  I can afford to see the doctor.  I can afford a personal trainer to help me feel better.  And I am feeling better.  I’ve been hitting close to 10K daily steps more frequently.  Then there’s this which Fitbit sent me earlier this year:

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I took 2,709,353 steps in 2015!!!  That’s 1148 miles!!  Which is 22 miles per week on average!!  The step challenges I participated in last year really helped propel me.

Then this week I got this from Fitbit:

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Since getting my fitbit 12/25/13, I’ve gone 2500 miles!!! Even I think that’s commendable for a full time, chronically challenged person.  And I have this one to thank for taking alot of those steps with me:

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I’m going to keep moving no matter what!!!

CDC and Opioid Guidelines

So it appears that we have an opioid abuse epidemic in our country.  In 2014 28,000 people died of opioid overdoses.  We read in the news about the rampant heroin overdoses and deaths that perhaps started when a person was overprescribed opioids.  Recently a  coworker had some rigorous dental surgery  and remarked that he was prescribed 30 oxycontin tablets – such an excess.

I definitely agree that we need to relearn how to treat acute and chronic pain.  We need to allow medication to be part of other therapies – physical therapy, massage therapy, weight loss, acupuncture, and over the counter medications.  We need to be made to understand that pain meds aren’t intended to eradicate pain.  They are meant to alleviate pain.  Ultimately the pain should subside and 30 oxycontin tablets for gum surgery is definitely overkill.

So this week the CDC released guidelines for prescribing opioids for chronic pain.  Chronic pain is deemed to last more than 3 months. They’re trying to do the noble thing by “recommending some extra measures for people who have been prescribed opioids. These include, taking them as directed by your physician, regular monitoring including more frequent visits to the doctors, a pain treatment plan, being aware of the side-effects, and urine testing.  The guidelines exclude patients being treated for cancer-related pain, palliative care, or end of life care.”      Rheumatoidarthritis.net

So the RA community took one huge collective deep breath this week.  Because most of us have chronic pain.  I’ve had it for 20 years.  I take opioids.  Not too often, but when I take them I can’t imagine not being able to take them.  So is RA care Palliative care?  Wren addresses that here in a great article on rhematoidarthritis.net  RA patients have already had to change how they are prescribed these meds.  We can get 30 days supply only with a written prescription that must be picked up at the doctor’s office.

I took 4 vicodins this week, in 5 doses.  I experienced a higher pain level this week due to the barometer fluctuations and still not at my full level of RA meds due to being sick most of the winter.  Each time I reach in to the pill bottle for a vicodin I have to weigh whether I really want to deplete my supply of drugs if it’s going to be more difficult to be prescribed these meds in the future.  I’m active, I exercise and stay busy but I still have pain.  I take Celebrex every day which negates my ability to take another NSAID such as ibuprofen.  Tylenol doesn’t touch RA pain for me.  I’ve tried it and it doesn’t give me the relief that a half or whole vicodin does.

I need to be able to get up and work most days.  I’m a commissioned sales person with not much of an emergency fund.  I have to move and function and there are days that my chronic pain needs an opioid.  My fear is that we have gone too far the other way in correcting how we prescribe pain meds for acute pain and I’m going to suffer as a result.  I can promise you that my friends in the RA community are like me – we take them when we need them.  Taking them for pain doesn’t make you high.  It makes you tolerate the pain better.  I know that I will need an occassional opioid for the rest of my life – I am not ever going to abuse them.

Winter Finally Arrived

It’s taken a few extra weeks, but winter made an appearance yesterday and today.  We had snow flurries all day yesterday, which amounted to about half an inch at home.  Today was bitterly cold.  Didn’t take me long to hit my slovenly winter stride.  I had a challenging work day yesterday and got home to the woodstove cranking, and asked Mr. if it was OK to sit in front of the TV and binge watch something.  Which is what we did and it seemed very theraputic.  Tonite I had my session with my trainer and she kicked my butt with kettlebells.  You can burn up to 1200 calories per hour with kettlebells.  I lasted about 20 minutes before I yelled Uncle and we started on other exercises.

I did ski for an hour over the New Year Holiday.  There is a dearth of snow in Northern New England, and not much opportunity to make snow with the warm temperatures recently.  But there were a couple trails open at our mountain and Mr. and I ventured out early and got 4 runs in before it got crazy busy and we were concerned about colliding with someone on our first day out.  There will be many more days this winter to ski.  But I will say that my legs felt very strong for the first day out.  I can thank my trainer for that.  We do a lot of quad work and while I’m still Phat, she says my legs are very strong.  And they feel strong and tight.  Not so much my core.  Sigh.  Someday.

I hope you all have a great start to 2016.  I am working on some health improvements and I will talk about them in a future post when I have more information  – the RA is fine, but I need to assess some of the meds and the side effects.  For now, I’m busy planning a busy upcoming weekend with my family celebrating my mom’s 80th birthday.  Hard to believe she has reached that milestone.  But also feel fortunate to have two parents that are healthy, mobile and with it.  I know that can change quickly so we appreciate it while we can.