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Last night, I came home from the hospital.  My new knee came home with me.  Overall the surgical procedure was fine.  The thing I was most nervous about was the epidural, which was a very insignificant part of the process.  No pain or discomfort and I was numb for 3 hours after surgery in recovery.  Sadly, the block wore off sooner and more completely than they expected, my room wasn’t ready, and they didn’t have pain meds in the recovery room.  Which I had trouble understanding.  That, and the recovery room wasn’t too busy that day.

They finally put some dilaudid in the IV, but it was too late and I was way behind on the pain.  When I got to the room I was in such distress, I cried for 3 hours. Mr Phat kept trying to encourage me to breathe deeply in and out.  Ultimately they got enough pain meds in me to get ahead of it and I’ve been doing fine since then.

The day after surgery I was getting in and out of bed fairly easily, and did the long “loop” on the ortho floor.  My doctor visited and said that the old knee had a lot of erosion, which is typical of what they see with Rheumatoid patients.  Not surprising.

I’ve already had my first Physical Therapy session this morning.  He thought I was moving along on my walker pretty well, and he showed me some exercises to do, interspersed with walking and icing.  That’s what I will be doing for the next few days – walking, icing, exercising and resting.  I will keep you posted on my progress.

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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.

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.

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.

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!!!