When to see the Doctor

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With RA it seems like there is always something going on: pain, swelling, even the occasional fever. So how do you sort out what’s “normal” and when you need to see a doctor (outside your normal checkups)?

First of all, just let me say that in case of any doubt, seek medical attention immediately. This includes severe things like profuse bleeding, vomiting, symptoms of heart attack or other life-threatening signs.

But beyond those things that are clearly emergencies, I use a series of “check-boxes” to decide if something is outside the norm enough to warrant a doctor visit.

Read the rest of the post here: https://rheumatoidarthritis.net/living/when-to-see-the-doctor/

Doctor holding stethoscope

What if it were Wheelchairs

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Today I read a MedPageToday.com article about experts responding to the new FDA Opiod Action Plan. I won’t take the time to paraphrase the article which contains links to the agency’s statement as well as other insights, but you can access it here: http://www.medpagetoday.com/PainManagement/PainManagement/56178?xid=nl_mpt_DHE_2016-02-13&eun=g999342d0r.

Coincidentally I read an article in this morning’s The Dallas Morning News about the widening lifespan gap between the rich and poor. http://www.dallasnews.com/lifestyles/headlines/20160212-life-span-gap-continues-to-widen-between-rich-and-poor.ece While factors like wealthier people smoke less and are less obese were mentioned, the article also stated, “More recently, the prescription-drug epidemic has ravaged poor white communities …”

If you do a Google search, you can find pages of links to discussions about drug abuse and addiction but very few about the actual number of people who are in great pain and who depend on prescription pain relief just to make it through the day. As Time magazine reported in January 2013 after the FDA announced its last revamp of opioid drug regulations (http://healthland.time.com/2013/01/31/fda-action-on-vicodin-may-mean-more-pain-not-less-addiction-or-overdose/), those regulations may result in more pain but not decreased addiction or overdose. Certainly that round of regulations placed considerable barriers for people with legitimate need for these drugs in their chronic battles against pain. However, it does not appear that the regulations made any impact on the number of people who were abusing them. If anything, abuse has continued to rise.

And yes, there is abuse. Unfortunately, there is abuse of all kinds in our society. There is abuse by corporate executives who raid the corporate till, by politicians who take bribes, charities that misspend trusted funds, alcoholics that drink the rent money, teachers that have sex with underage students. The list goes on and on and on. But we don’t comprehensively condemn all executives or charities or politicians or even alcoholics.

Prescription opioid drugs are a tool that makes many people’s daily lives livable – just like a wheelchair does for many people. Just as wheelchairs make people mobile, pain medications are the vehicle that enable people to actually participate in life. So I wondered: what if we substituted the word “wheelchairs” for “drugs” in the conversation.

While I read about many politicians ranting about opioid drug use, I can’t see the same rhetoric coming out of their mouths if the topic were wheelchairs. Instead, I believe there would be a more reasonable discussion about targeting wheelchair abuse rather than making wholesale changes to policies that could condemn deserving people to a life of immobility. Can you hear a politician saying that we should require a patient to go to their doctor every month to make sure they’re still disabled enough to use their wheelchair for thirty more days? It’s a bit ridiculous, but no more ridiculous than thinking that chronic pain caused by an incurable condition like RA or MS or fibromyalgia will magically disappear.

And I have to wonder, just in general, WHY? Perhaps, unlike drug cartels who import illegal drugs into the country or home-grown meth dealers with bathtub chemistry sets, opioid pain relievers in this country are manufactured and/or distributed by American pharmaceutical companies that are already among the most highly regulated businesses in the world. Unlike pouring millions of dollars into the war against drugs, it takes very little effort to tighten the screws a little bit more on an industry you already have under your thumb.

But the fact of the matter is, pain is torture. It always has been. From the medieval torture dungeons and the Spanish Inquisition through potentially illegal activities at Guantanamo Bay, torture/pain is what we use to punish people. By placing barriers and restrictions that inhibit patients in pain from receiving needed medication, we wind up potentially sentencing millions of innocent people to torture. These types of sanctions, as history has already demonstrated, do not impact illegal use, but they do punish people who are already suffering.

In researching some of these facts, I found very few balanced articles or sites that support patients’ rights in this area. One of them is http://www.uspainfoundation.org/. I am not recommending that you join any particular organization. What I am recommending is that one way or the other you make your voice heard.

Wishing you a pain-free day. Thanks for checking in.

When Insurance Companies Play Doctor

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Let me just state right up front that I am exceptionally grateful for insurance companies and for the fact that I can afford fairly good health insurance that puts a great medical team and some very expensive drugs within my financial reach. I know that it’s an incredibly difficult business, particularly with the shifting landscape of recent health insurance legislation. It has to be a very tricky balance of containing costs while meeting their fiduciary responsibility to those who are insured.

I get it.

All that aside, it makes me a bit crazy when it appears that insurance companies cross the line and actually start practicing medicine.

Read the rest of this post here: https://rheumatoidarthritis.net/living/when-insurance-companies-play-doctor/

I mean, really?

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A lot has been said about the high costs of chronic diseases, especially things like rheumatoid arthritis where biologic medications can cost thousands of dollars each month. When costs are mentioned, it usually refers to the actual money spent by patients and insurers for medical treatments. It occasionally refers to the revenue impact caused by missed time at work, early retirement due to health reasons, or loss of income due to disability.

The money is, obviously, very important and it’s fairly easy to quantify. But to me, one of the true costs of having a chronic disease is the TIME it takes out of your life. In addition to the time it takes to see the doctor, there is also the time you spend not feeling well and missing out on life as well as just frigging managing everything.

When I left the workforce last November to concentrate on improving my health, I didn’t realize that I was trading one career for another. Here’s a look at my next few days:

Thanks to virtuallynadine!

Thanks to virtuallynadine!

  • Today (Thursday) I had to get my every-four-weeks labs done since we’re carefully monitoring liver enzymes due to the high doses of medication that I’m on.
  • This was followed by an hour of physical therapy to hopefully improve the contracture of my calf tendons and avoid a painful surgery with a long recovery.
  • Tomorrow (Friday) I have my every-six-month check up with my cardiologist. I do this every six months instead of annually because people with RA are at a higher risk of cardiovascular disease than those who don’t have it.
  • Saturday I pick up hundreds of dollars worth of prescriptions at the pharmacy for myself and my husband so I can fill up our pill minders over the weekend.
  • Sunday I take my weekly methotrexate injection.
  • Monday I have my monthly Actemra infusion and take most of the rest of the day to recover from the headache.
  • Next Tuesday and Thursday I have physical therapy (again).
  • Every day for the next six weeks I have to do my physical therapy “homework” twice each day.

That’s six appointments out of the house in about eight days, plus managing my medications and doing my physical therapy homework.

In between all of this, I have ongoing, continuing, mind-numbing battles trying to push insurance and disability claims forward through the system.

And my husband asks what I did all day while he was at work. Sheesh.

I hope the time you spend today is done pleasantly and with people you love. Thanks for checking in.

Voices in My Head

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I cleaned my oven yesterday. Even though my kitchen is one of those places where you could probably perform major, invasive surgery on nearly any surface without fear of infection, I’ve always questioned the need to clean an oven. I mean the food never actually touches the oven surfaces and the food that does splatter gets so desiccated and sanitized from the oven heat that it’s unlikely to crawl off the oven walls and kill anyone. But even I had to admit the oven was overdue to be cleaned.

Even with my self-cleaning oven, the racks should be scrubbed by hand, which was what I was doing. It has been some time since I tackled this chore and I use my oven a lot, so there was a lot of scrubbing to be done.

As I stood bent over the sink and worked the steel wool pad with the oozing blue soap ruining what was left of my manicure, I could hear the voice of my step-mother in my head.

My step-mother worked as a school teacher so when school was out, there was a huge list of chores that we accomplished during the summer. (These were mainly tackled by my step-sister and myself. Somehow the two boys in the family seemed to be absent when the time came …) Kitchen cabinets needed to be emptied and scrubbed. Windows were washed inside and out. Ruffled curtains from the bedrooms, baths, and kitchen were taken down, washed, hand starched, ironed and rehung. Carpets were shampooed. Bushels of produce from the garden were picked, cleaned, and pickled or canned. And, of course, the oven got cleaned.

The oven generally needed to be cleaned in warm weather because those were the days before self-cleaning ovens and the horrible lye oven cleaners would smell up the entire house. So the chore had to be done when it was warm enough for the doors and windows to be opened for ventilation. But again, like today, the racks needed to be done by hand — a chore that I probably misremember but that seemed to wind up with my name on it.

I remember spending what seemed like hours scrubbing the racks clean of burned-on grease and food. Nearly all of our meals were home-cooked — biscuits in the morning before school, Swiss steaks slow-cooked in the oven, birthday cakes and cookies, and holiday feasts — all leaving their trace on the oven. And then my step-mother stopping by to check on my progress, saying, “The racks aren’t clean until the bottoms are done, too.”

My step-mother was a kind, wonderful person and not really a task master. But she was a school teacher and she knew when a job was done well and when it wasn’t. And she knew that I knew it as well and expected no less.

So as I scrubbed on the racks yesterday, I heard her voice in my head reminding me that I needed to scrub the bottoms as well.

Then I heard another voice. The conversation went something like this:

RA: You know your fingers hurt.

Me: Yes, I know, but I’m almost finished. I just have the bottom of the second rack to scrub, then I’m done.

RA: I’m sticking sharp sticks in your elbow and I’m going to swell up your wrist.

Me: Quit it! It’s not done until the bottom of the rack is clean as well.

RA: You know your shoulder where you’ve had not one, but two rotator cuff surgeries? And that place in your back where you’re still recovering from spinal fusion surgery? Guess what? Here come some shooting pains just for you. Ha!

Me: I give! I give! Enough is just going to have to be good enough this time.

So to my step-mother (may she continue to rest in peace), I’m sorry, but you were outvoted. And to myself, I have to remember that sometimes with RA you have to accept that what you can do is all you can do. (And nobody sees the bottom of the oven rack anyway …)

I hope whatever voice(s) you have in your head bring you good news. Thanks for checking in.

A New Word: Kinesiophobia

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I love words. Not only do I believe that they’re one of the most powerful forces in the

From the Tampa Scale of Kinesiophobia

From the Tampa Scale of Kinesiophobia

universe, I’ve been blessed enough to make my living writing for more than 20 years. Once in a while I run across a new word that really resonates with me and I learned such a new term the other day: kinesiophobia. (Thank you, HealthSkills.wordpress.com!)

We all probably know what a phobia is: the fear of something. The “kinesio” part of the word comes from the Greek language and relates to the movement of the human body. Kinesiophobia, therefore, is the fear of movement.

This is most commonly seen when people either avoid doing something altogether (such as stop taking the stairs in favor of the elevator) or modify either how they’re doing something or the duration that they do it. I have certainly been guilty of this and I know other RA sufferers have as well. Fellow RheumatoidArthritis.net contributor Tamara Haag wrote about several personal examples of this in her recent excellent article, “Tentative me.” More times than not, this behavior is insidious and sneaks into our daily lives without our even realizing it.

Read the rest of this post here: https://rheumatoidarthritis.net/living/a-new-word-kinesiophobia/

Assistive Devices

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I’m amazed when I stop and think about how many “assistive devices” I now have in my life. I’m not talking about canes, crutches, or walkers (although I own all of those and have used then on occasion after joint surgery). I’m talking about everyday items that I have purposely bought to make my life (with RA) easier.

Read the rest of the post here: https://rheumatoidarthritis.net/living/assistive-devices/

And sometimes the bear gets you …

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So if you’ve seen the new Leonardo DiCaprio / Tom Hardy movie, Revenant, you know how brutal it is when the bear does actually get you. I have to say that my situation isn’t any where close to being that bad and that it’s improved greatly just since yesterday. However, the rosy picture I painted with my last “Good News” post has gotten a bit tarnished around the edges.

I took my second MTX injection on Sunday. By the end of last week, some of my regular, bellwether aches and pains (noticeably my ankles and feet) were starting to protest again in the mornings when I got out of bed. I suspected that this was a result of the MTX wearing off. Sure enough, Monday morning after the MTX shot on Sunday, those joints were once again quiet.

That’s the good news.

The bad news is that I woke up with this weird pain in the knuckle of my left index finger. I

See sore, swollen knot.

See sore, swollen knot.

don’t normally have pain in a single small joint. (Large ones like knees, yes. Small ones like knuckles, no.) It’s usually all involved like from the ankles and down across my feet or from my wrist to my finger joints. The day went on and the pain got worse. At times it was actually throbbing and it was very sensitive to the touch. Soon there was a red, swollen knot that had come up on this joint. I was afraid that I was getting an RA nodule. I associate nodules with elevated disease activity, so the fact I was experiencing this the day after I’d taken an RA medication was especially worrisome. After I did a bit more research I learned that RA nodules can actually be a side effect of taking methotrexate! Today the spot is not quite as red, swollen or tender. Based on where it is, I also don’t think it’s a separate nodule as much as the joint being swollen out of shape. If it’s still there in a couple of weeks when I see my rheumy, I’ll find out more.

The other bad news is that yesterday I learned my disability claim had been denied. This was a real blow because I’ve basically been without an income since mid-November when I left the workforce to concentrate on my health. However, today when I spoke with the disability company, I learned that the claim status had changed because they were missing a key form/piece of information from my rheumatologist and they couldn’t complete the determination until they got it. So they retransmitted the form to my rheumy this morning and I followed up with the practice to make sure they were on alert to get it turned around. I also asked that they include a cover letter from my doctor that stated that in her clinical opinion the claim should be approved due to my inability to work on a full-time basis. Hopefully when all that gets done the claim will get approved. The good news is that the claim hadn’t been denied because they had determined that I am still well enough to work full time. That determination can lead to protests and all kinds of issues. We may still wind up there, but it doesn’t sound like it at this point.

So that’s the update on the battle as of today. I hope that today is the day you get the bear and not the other way around. Thanks for checking in.

Updates – Good news at last!

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Okay, so I’ve been whining a lot lately. I think I’ve had reason, but whining none the less. But this past week has borne out my long-held assertion that this, too, shall pass. Here are some updates:

Thanks to www.elisapreston.com for this great graphic.

Thanks to http://www.elisapreston.com for this great graphic.

  • Monday was my first infusion with the doubled Actemra dose as well as my first methotrexate injection. While I was pretty wiped out Monday afternoon, I was no longer hobbling in pain when I got up Tuesday morning. That was the first time that’s happened in more than a year. The most amazing part is not only the pain relief but how much the mind-numbing fatigue has lifted. Not even the dreaded methotrexate brain fog. I have had so much energy and enthusiasm this week, I feel like a new person. I don’t think I realized how badly I felt until I started feeling better. I even sent a message to my rheumatologist on Wednesday afternoon extolling how great I feel. I know it’s early and I know that I have a history of becoming resistant to treatments, but if this great feeling should go away tomorrow, I’ll continue to be thankful for the wonderful week I’ve had. As the old joke goes, “He may not be Mr. Right, but he’s Mr. Right Now.” This treatment plan may not work forever, but it’s working for now and I’m happy.
  • My insurance copay for the Actemra, which was $150 under my old plan, has dropped to $50 under the new plan.
  • According to my scales (my doctor’s is slightly different), I’ve lost 15 pounds since I started on my weight loss journey. As a result, all my labs are looking good. Cholesterol is down. Triglycerides (which are the bane of my existence) have dropped by half, well into normal limits. The glucose intolerance I developed appears to be under control with results at healthy levels. All this happened over the holidays where I succumbed to more temptation than I should. The really, really good news? The exceptionally expensive drug that I’ve been taking to support this journey is now covered by my new insurance, so I can afford this investment. (My cost dropped from $1100 to $35.) Of course, I still have to lose more weight than I’d like but I am encouraged by these early results.
  • I think I’ve worked through all the (ridiculous) insurance/COBRA issues that cropped up and have my 2016 insurance plans in place as they should be. There are still weird, errant things that have popped up. For example, I got a letter from my December insurance carrier with a bill for $222 for premiums for December. The website clearly shows my payment for more than $600 and fully paid coverage through December 31. No clue why I got this letter and the insurance rep says it was sent in error. Errors like that tend to result in denied insurance claims. And while we’re well into January, I have no doubt there are some miscellaneous claims from last month floating around cyberspace. So I’m still holding my breath but I have paid my premiums through the month of February (for not only health but the previously missing dental and vision coverage), and I am hopeful everything is finally solid.
  • I had my follow-up visit with my spine surgeon. My TLIF surgery is healing nicely. I have a follow-up in four months at which time I’ll hopefully be released. At this point, though, the surgeon did clear me to do the stretches to help resolve some issues I’ve been having with my IT band, so I should be able to improve that situation as well. Those stretches tend to torque the spine and my physical therapist was very hesitant to have me do those until I got clearance.
  • There are still some things unresolved. The big one is that my disability claim that I filed in November is still “pending”. This means I have had no income since I left the workforce. Under ERISA regulations, they have two more weeks to make a determination. I have no doubt they are looking for ways to deny the claim so I have started my search for a benefits lawyer so I can appeal the decision.

All in all, 2016 is starting off well. As they say in the securities business, “past performance is not an indicator of future results.” This means that just because things have gone well in the past doesn’t mean they won’t go to hell in a handbasket in the future. I’m, if not smart enough, at least experienced enough to know that things can change in a heartbeat. But I at least have hope and that’s a good thing.

I hope your new year also bring you hope as well as health and happiness. Thanks for checking in.

The Patients’ Voice

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Those of you who follow my blog know that I’m a supporter of Creaky Joints and the associated Joint Decisions and Arthritis Power initiatives. I have (belatedly) run across a news release from them entitled, “New Study Confirms Arthritis Patients’ Ability to be More Integral Contributors to Clinical Practice Guideline Development.” I’m not going to recite the findings of the study here, but the release (and the study) is certainly worth a read. Importantly, the study stated “that patients developed nearly the same recommendations as physician-dominated panels for questions where there was evidence warranting moderate to high confidence.” Normally treatment recommendation guidelines are determined by panels that, if not completely comprised of physicians, only have one or two patient advocates. This study clearly demonstrates that patients are well suited to participate in developing treatment guidelines.

For (some or maybe many) physicians, this concept is unsettling. I suppose it’s like a driver telling a highly trained auto technician how to diagnose and fix a catalytic converter. But while the technician is the expert in repairing cars, the driver is actually the expert in knowing how the car performs.

The same is true in the doctor-patient relationship. The doctor is certainly the expert in the clinical aspects of a treatment. However, the patient is the expert in knowing how they feel as well as which treatments are palatable enough that they will actually comply with them. Only the patient knows, for example, if they’re suffering enough to undertake the additional risks of moving from a DMARD to a biologic in order to find relief.

Having this voice, in my opinion, is critical in defining treatment guidelines that affect, not the doctor, but the patient.

And while some patients prefer to simply follow their doctor’s advice (and there is nothing wrong with this), I prefer being an active participant in my health care.

I hate having RA. But I love living in a time where patients voices are not only heard, they’re starting to be sought. There are many ways to participate. If you want a place to start, click on the Creaky Joints, Joint Decisions, and Arthritis Power links above.

Thanks for checking in.

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