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!!!

Unexpected trip to the Rheumy

I had an unexpected trip to see my Rheumy yesterday.  I woke in the middle of the night with excruciating pain in my left knee.  The kind of pain that makes you whimper.  Pain medication didn’t touch it and an ice bag didn’t do anything.  I lay in bed from 1:30am to about 5:30 writhing in pain.  I think I finally dozed a bit and then got up by 9am and started to cry all over again.  Thankfully the doctor could see me in a few hours.

He didn’t have anything conclusive.  He felt that with the inconsistent dosing of my biologics and metho for the past few months due to my many respiratory infections, perhaps I was having a bad flare.  “In one joint?”  I asked?  Shrug.  He offered a cortisone shot – which I usually don’t want to have, but I couldn’t tolerate the pain.  He also gave me a script for an Xray in the event that the pain hasn’t subsided in 10 days.  Then we chatted about pain meds.  We discuss them regularly during visits and he knows that I’m a responsible user.  He said that going forward the rules were that he couldn’t prescribe opioids to me unless he’d seen me in the past 90 days.  Which normally is fine with me.  I see him every 6 months and he typically will give me a script for 60 vicodins which lasts for 6 months at least.

So I mentioned that I had read some of the CDC guidelines and he said that the rules about 90 days had nothing to do with the CDC.  He hasn’t even had the chance to really review and digest the new CDC guidelines.  What he did say is that years ago, opioids were strictly for end of life situations or cancer patients.  The were not used in rheumatology.  A couple of decades ago the rules were softened as the medical community tried to offer more options for those in pain.  Well thank goodness.

My grandmother had RA – she was diagnosed maybe 1970-ish.  I remember at some point in the late 70’s or early 80’s when my father got her some of the 800mg motrin pills.  Remember those big orange pills?  Those were a huge relief for her, and better than anything she had used to date, but I know she lived in pain until she passed away.  I don’t think she ever took anything stronger than 800 mg motrin.

I started on the 800 mg motrin initially upon diagnosis in 1999.  I remember that I bruised like crazy and the pain was slightly diminished.  I’m actually very glad that I don’t have just 800 mg motrin to rely on now.  I am still working full time and am productive and active.  One trait I carry with me that I learned from my grandmother was to not complain.

However, if the new CDC guidelines are going to get in the way of my RH doctor prescribing me 10 pills a month for pain, I just might have to start complaining.

 

 

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.

In Like a Lamb

March definitely came in like a lamb, compared to the last few months.  Since November I had gotten sick in 4 consecutive months.  I think it was actually the same infection that kept rearing it’s head.  Finally, the 4th course of antibiotics, coupled with a new allergy medication seems to have done the trick.  I’ve been healthy for about 5 weeks.

I did stop the injectible RA meds for 6 weeks.  Over the past few years I’ve wondered how well they really work.  I found out.  By the long weekend in February my wrists hurt enough to need ice, my knees hurt like days of years ago, pain meds barely touched it and exhaustion ruled.  I started back on the President’s holiday with an injection of Enbrel.  The following Monday I did an injection of Methotrexate and this morning was Enbrel.  I thought I’d try alternating weeks rather than taking both each week.  Perhaps too much immune suppression lowered my defenses too much.  So far so good.

Finally I got a chance this past weekend to try out the gear I purchased:

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And it was a beautiful weekend to do so!!  This is Mount Lafayette, across from Cannon Mt20160306_083551 [141181]

This Picture is from the Mittersill Chair looking over to Mt. Lafayette. 20160306_100725 [134286]

And here’s a selfie – not a great picture, but I was having a ball!!!

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The season isn’t going to last too long in New England this year, so I gotta ski while the skiing’s good.  Thankfully my joints feel good enough to be out there.

 

Frustration

I follow a number of blogs by individuals with chronic health issues, most of them with Rheumatoid Disease like me.  Seems to be a common theme of late – we are all frustrated by our health, our doctor’s and their offices and the medical insurance community.

For me, the frustration is that I’ve been unable to fully get rid of this upper respiratory infection that I’ve had on and off since Halloween.  I would get well enough to think it was behind me and I would resume my normal activities and then WHAM, it would knock me on my butt again.  This happened 4 times, and this past week when the fatigue and sore throat returned I called my PCP and got in to see him that day.  I expressed my frustration and my fear of constant anti biotics, but unfortunately due to my anatomy the bacteria gets stuck in the sinuses and it seems strong anti biotics are the only way to rid my body of the gunk.

He prescriped a stronger anti biotic and for a longer period of time.  He also prescribed Singulair pills at night.  I need another script like I need a whole in the head, but he said that this helps the underlying allergy issue (which I have) and maybe it will help what ails me.

It gave me the chance to discuss my ENT and Rheum Doc visits that I had in the past week as well.  The ENT had gotten the Catscan results of my sinuses.  The passages looked clear, with one exception and therefore he didn’t think I needed sinus surgery.  However, there is still the large bone tumor that resides in my sinuses and that could be part of the trouble.  We decided that I should have a specialist look at it to see if there is a way to extract it.  I haven’t seen a specialist in 20 years and at that time, the surgery required wouldn’t be pretty.  The ENT also reiterated getting off the Enbrel.

My Rheum doc said my meds were fine, everything was fine on his end.  He doesn’t see a lot of patients that seem bothered by sinus infections who are on Enbrel.  He said he doesn’t think that the Enbrel is causing the infections.  However, he agreed that the less medication I take, the better it is and perhaps spread out the injections and see how I do.

So I’m stretching out the Enbrel, and going about 10 days in between methotrexate injections, taking Singulair and a steriod nasal spray while using the neti pot daily.  Hopefully I will be headed down a better road shortly because I love winter!!!