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!!!

 

Sinus Infection – Again or Still?

I woke Monday morning with a sore throat, and presumed it was a sinus infection for 2 days, but Wednesday morning I knew that I had caught the grandkids germs because I had a full blown cold.  Cold meds kept me working Wednesday, but overnight I couldn’t breathe and therefore didn’t sleep.  I visited the doctor on Thursday and he gave me some antibiotics, told me to stay away from sick people (easier said than done) and sent me on my way.

This makes the third time since November 1 that I have taken strong antibiotics for 7 days in a row, which concerns me.  My ENT says I need to get off the biologic medication but my primary care says if it works, stay on it because he can treat the sinus infections.  Sure, but what’s the tipping point of developing resistance to anti biotics?

This morning I found an article on Health.com called 13 Sneaky Causes of Sinus Trouble.  I definitely have 7 issues and probably have 1 other problem.

  1.  Allergies – I have environmental allergies.  20 years ago I was tested and basically if it grows, I’m allergic to it.  Trees, grasses, mold, dust mites all affect me.
  2. Bacteria – this is principally my sinus infection issue because my sinuses can’t drain and bacteria grows
  3. Irritating Pollutants – who isn’t exposed to this in our world?  We heat with a wood stove so I would say that the smoke is an irritant.  Our world is full of pollutants
  4. Overuse of Nasal Products – am I too dependent on my neti pot?  And Afrin, which I really try to use sparingly?
  5. Lack of Moisture or Dry air?  See #3 about the wood stove.  Our house is dry, the air in winter is dry.  I try to drink a lot of fluids, but it’s not enough, I know.
  6. Unusual Anatomy – absolutely!!!  I have an Osteoma in my right ethmoid sinus.  It’s a bone tumor that blocks the opening of this sinus cavity and wreaks havoc with my head
  7. Chronic Medical Conditions – You think?  See numerous previous posts about RA and the biologics and sinus infections and my compromised immune system
  8. Polyps – these are small benign growths in your sinuses that can restrict airways and cause headaches.  I don’t know if this is a current problem, but it’s been a problem in the past and I have had surgery for nasal polyps twice in the past.

 

I had a catscan of my sinuses last week and get the results later this week, but reading the symptoms of nasal polyps tells me that this is most likely a culprit as well.  I’m not one for headaches, but I’ve been having them alot lately.  I also have had some episodes of blurry vision and I really believe that this sinus infection flared so quickly because I’ve not gotten rid of it the previous 2 sessions on antibiotics.

I’m not one that likes to be laid up for very long, or too often.  I’m missing some valuable ski days which annoys me, although I will say that I’ve had some quality time with my man and my dog while being snowbound this weekend in Rhode Island.  And I received this picture of the grandkids this morning which truly is what life is about:

the kids

 

 

Part of Me, Part of You

We can never know about tomorrow
But still we have to choose which way to go
You and I are standing at the crossroads
Darling, there is one thing you should know

You’re a part of me, I’m a part of you
Wherever we may travel, whatever we go through
Whatever time may take away
It cannot change the way we feel today
So hold me close and say you feel it too
You’re part of me, I am part of you, part of you

Read more: Glenn Frey – Part Of Me, Part Of You Lyrics | MetroLyrics

thelma & louise

Thelma & Louise

Remember Thelma & Louise?  It’s a  1991 movie that was near to my heart because it tells a story of women power and against all odds friendship. (It also introduced most of us to Brad Pitt, but I digress).   I have a picture on my bureau of my cousin and I sitting in my 1971 Oldsmobile convertible that I always referred to as my Thelma & Louise picture.  The song Part of Me, Part of You was my favorite song from the movie – I remember playing it in the car and singing along.  Loudly.  That song was written by Glenn Frey, a founding member of the Eagles, another band that wrote some of the soundtrack from my life.

Glenn died yesterday from “complications of rheumatoid arthritis, ulcerative colitis and pneumonia.”  I didn’t know that Glenn had RA or UC.  Two autoimmune diseases.   But I found the following picture on a blog today here  Jia Mom.  She is angry that people are dying from a disease that most people dismiss as being due to old age.  She’s angry that we haven’t found a cure yet.   glenn frey

And I think she’s angry, as I am, that another icon of our youth has passed on.  We can’t stop that.  It’s going to happen, but when you’re a patient of RA, like I am, and you’ve been struggling with the cycle of upper respiratory infections that I’m prone to getting, and inject a medication that lists sinus infections as a primary symptom, it makes me pause.  I wonder what am I doing injecting these meds that suppress the immune system but also create other symptoms.  I haven’t been able to lick this since last fall – how many series of antibiotics can I safely take before I mess up my immune system even more.  And then what happens when I’m in a weakened state and I catch pneumonia?  Could that be a death sentence as well.  It’s a bit scary and I’m hoping to get off this sinus infection/antibiotic cycle soon.  I have some other complicatory factors so the answers aren’t easy for me.  I don’t think they were easy for Glenn Frey either.

Glenn – thanks for helping with the soundtrack of my youth and my life.  You gave me a lot to sing about.  RIP.