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.

The Post with No Name

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I couldn’t figure out what to title this post. It could be a lot of things including, “Why I Love My Rheumatologist”, or “Take That, RA!”, or even “The Hail Mary.” Better I should just fill you in.

Even though I haven’t always expressed it in this blog, I have been very discouraged. My RA hasn’t been well-controlled since Xeljanz stopped working for me more than a year ago (August 2014). Since then I’ve been through Remicade infusions, daily Kineret injections, Actemra injections and, most recently Actemra infusions. It’s not that we haven’t been trying, my RA is just stubborn. And I must tell you, going from drug to drug to drug without success (on top of everything else that’s happened the last year) has taken its toll. Treatment has been further curtailed because my liver enzymes have been frequently elevated, leading to backing down on my medications and a series of lab tests and a liver biopsy that, fortunately, eliminated any concern of liver disease.

Yesterday I had my appointment with my rheumatologist. I purposely moved it earlier in order to see her before my infusion scheduled for next Monday. I started the conversation by telling her how discouraged I’ve been and that I haven’t had a day that I’ve felt really well in over a year. I also told her that if this the new reality of my life and she told me that, I would accept it, but I couldn’t continue on the way we have been. I needed to either resign myself to not feeling well or we needed to do something to improve the situation.

She pulled up my labs on her laptop and, turning the computer so I could see it, we went over my test results, the notes from my liver biopsy, and my treatment history. We talked about treatment options. We both agreed that we need to see if we can enhance my results with Actemra because, other than Rituxan, I have “failed” on every other biologic on the market.

Pretty much across the board, medical protocol is to start with the lowest dosage of a drug and increase in small increments until you achieve the desired results. This is what we’d been doing for the last year without success. We needed to get the situation under control. I told her we could always back down if liver enzymes or other factors dictated it.

So, starting immediately, this is the new protocol:

  • Double the Actemra infusion dosage from 4 mg/kg to 8 mg/kg. First infusion is in three days (assuming insurance approval).
  • Add 15 mg of methotrexate via injection weekly (as opposed to the 20 mg. of leflunomide that I was taking at one time and had to stop because of liver issues). Include folic acid to help offset the side effects.
  • Monitor labs every four weeks to make sure we’re not blowing out my liver or have other concerns.

She also gave me a steroid injection in my left hip. For the first time in months I got a good night’s sleep without constantly tossing and turning or waking up in pain due to the bursitis.

Yes, it’s a lot of drugs. But for the first time in over a year, I feel encouraged and hopeful. As I told my rheumatologist, if we can get things under control, we can start backing down, but now that Hail Mary pass is what we need.

I appreciate you for coming along with me on this journey and the support you’ve given me. Hopefully this start to the new year will be the start of better health for me. Thanks for checking in.

Wow! What a Start to the New Year

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This blog was just honored by ChronicPainDisorders.com by being named a best Arthritis Blog for 2016. Again, I am in awesome company with other blogs that I also consider some of the best of the best. (I am WAY flattered but I’m starting to wonder if I shouldn’t just quit while I’m ahead and take all this attention and run ….  Just kidding.)

Please check out the site and join me in congratulating all the other wonderful bloggers who were also on the list. Click on the link below the “badge” to check it out.

ChronicPain badge

http://www.chronicpaindisorders.com/the-best-arthritis-blogs-for-2016/

Adventures in Insurance

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So if you don’t want to read a long, whiney post, just keep on scrolling. I posted something earlier today that’s a whole lot more uplifting.

I officially left the workforce in November. From an insurance standpoint, this means that I was covered by employer’s policy through the end of the November. In December, I was able to continue that coverage under COBRA which simply meant that I paid 100% of the premium instead of the company paying a portion. As I had 0obstaclecoursedesign-000met 100% of deductibles, out-of-pocket, etc. and everything (including prescriptions) was being paid, it was a good deal. It took some diligence to make sure everything was in place and that coverage didn’t lapse. The Thanksgiving holiday slowed some progress, but everything worked out.

Now last year, through December, medical coverage was through Insurance Company A. My ex-employer switched insurance providers starting January 1 to Insurance Company B. In order for me to continue coverage, I had to pay my December premium to Company A. Once I paid for December, my information was to be transferred to Company B for coverage under the new policy starting in January. I then had to pay my January premium by a certain point in December. With some hand wringing and tooth gnashing on my part, all of that happened but we got down to December 28 and I had no confirmation (even though I paid the premium) that I actually had health insurance coverage starting January 1. This was important because the first two weeks of January, I have scheduled two sets of labs, one X-Ray, three doctors’ appointments, my Actemra infusion, three prescription refills, and four physical therapy sessions — all of which had to be verified with the new Insurance Company B. But finally on December 28 I was able to print out a temporary insurance card and start providing the pertinent numbers to those various people who needed it.

So I’m feeling pretty good. I start January with a sense of accomplishment that even though I had been treading some pretty treacherous waters, I had successfully transitioned from group coverage to COBRA and then to a new insurance provider.

I guess being smug is the same thing as pride because I was feeling smug and there was definitely a fall in my future.

I was on Insurance Company B’s website checking to make sure that my dentist (with whom I have an upcoming appointment) was in network. But the weird thing was that I didn’t see any dental insurance coverage listed.

I contacted my old HR department. We went around the mulberry bush a few times (metaphorically speaking) before we figured out what happened. In addition to the health insurance election I made back in December, I was to have also made elections (if I wanted) for continuation of dental and vision insurance. But guess what? Those were never transmitted to me, so I had no opportunity to make the elections. So my dental and vision coverages had actually lapsed in December and therefore had not been transferred to the new provider to begin coverage in January. I didn’t know they weren’t bundled altogether, so I didn’t raise a flag at the time. I selected the only thing that was made available, which looked like this (whatever those codes mean):

Insurance elections

The “fix” was to go back to Insurance Company A, turn on those elections and pay the December premiums. Theoretically this would then automatically flow through to Insurance Company B where I could then pay the January premiums and once again have my eyes and teeth covered. Oh, and it’s now the first week of January and I only have until January 14 to make all this happen or I lose eligibility. Previously, it took more than two weeks for each step of the process for medical coverage.

So I immediately thought to myself, “Self: It’s still open enrollment. You can just find an individual dental policy and sign up for it and skip all that trauma.” So while I had my old HR department chasing down how to “turn on” the original elections that should have been available to me two months ago, I start on a multiple-hour investigative journey into the land of dental policies to see if I can find a reasonable replacement on my own.

I’m sitting there after a few hours, my desk littered with printouts of policies, trying to sort out which are affordable, which have my dentist in-network, which are insurance companies I’ve actually heard of, and my phone rings.

It’s my physical therapy provider. They can’t verify health insurance benefits for my PT appointment the following morning. It appears that Insurance Company B has my birthdate wrong. Since my provider has the correct birthdate, it doesn’t match what the insurance company (incorrectly) has and they won’t verify that I’m covered.

So this is the first Monday of the new year, right? Insurance companies are getting slammed by people with questions. Insurance Company B’s website has crashed. It won’t even load. (They eventually put up an error message.) I call the customer service number. I am on hold for 46 minutes until I finally get a representative. (Thank you, Sprint for unlimited minutes …) She immediately asks me to verify my birthdate. You can only imagine how that conversation goes.

It doesn’t get much better after that, compounded by the fact that English is obviously not her first language. But she tries to be helpful and eventually, after about 17 security questions, decides she’s actually speaking to me and tries to fix my birthdate. She can’t do it. It’s one of those protected fields that only authorized users can change and she obviously isn’t authorized enough. She says she’s sent the request to “operations” but it may take three to five days for it to be corrected. I explain that’s not good enough and ask if there is a supervisor or someone else who might be able to help. She puts me on hold. Comes back. Puts me on hold again. She finally comes back and tells me that no one is answering — she is rolling directly to voicemail. So after more than an hour, I’m not really any closer to getting the situation fixed than when I started. She did, however, tell me the issue with my birthdate. The last four digits of my Social Security number (which actually form a valid date) got input as my birth year. (I am momentarily elated as this makes me much, much younger than I actually am …) She also told me that my old company should be able to correct this issue on their administrator screens.

So I go back to my old company’s HR department (who is still trying to work on my dental and vision elections) and explain the new problem. No, they can’t fix it on their screens. But they did send in an urgent request to their Insurance Company representative.

Deflated, but not yet defeated, I return to my quest for dental coverage. It turns out the best policy I can find will cost about 20% more than what coverage would be through my old employer. That’s actually not a lot of money as dental premiums are not that expensive for one person. The problem is, that since my dental coverage actually lapsed (through no fault of my own), I was looking at a six- to 12-month waiting period for any kind of dental procedure other than a simple clean and check. I have not one, but two crowns that need to be replaced, so that issue made my finding my own, separate dental policy a really bad idea.

I give up for the day and go drink scotch. Glenlivit bottle

The next morning there is an email for me from the company HR department. They say the birthdate issue on the health insurance is now corrected. Sure enough, when I arrive at the PT appointment, they are able to verify coverage and my pharmacy has also been able to process my prescription refills.

I call Insurance Company A and ask them what the December premiums will be for dental and vision insurance. Even though neither the elections nor the premiums are showing up yet on the website, I make a payment online. As soon as the premium notice shows up, I need to have the payment waiting for it. Because it still has to be processed then transmitted to Insurance Company B in order for me to pay the January premium.

So things aren’t perfect (yet). But the truly large issue of health insurance has, at least, been addressed for the moment. I have people helping me work the issue of the dental and the vision coverage. True these are, no doubt, the same people who caused the screw up in the first place, but who better motivated to correct the situation?

It’s now the third work day of the new year. I hope this week is not a harbinger of the rest of the year. But I do hope your 2016 is not only starting well but will be filled with both health and happiness.

Thanks for checking in.

Hurdles

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When I was a little girl, I hated getting shots. Annual vaccinations for school were bad enough but when you were sick and had to go to the doctor, it was even worse. That was because when you got a shot (as opposed to, for example, that great cherry-tasting cough syrup), that meant you were REALLY SICK. That’s what our friends said: “She was REALLY SICK. She had to get a shot and everything.”

The first time I gave myself an injection was in the hospital after my hip replacement surgery. As a precaution against blood clots, knee- and hip-replacement patients are routinely prescribed blood thinners for a period during recovery. The new oral medications hadn’t yet been introduced, so the drug of my surgeon’s choice was Lovenox® which is a daily injection, administered in the abdomen. By this time I was old enough to quit being quite so squeamish getting shots given to me by others, but never in a million years did I ever imagine actually having the courage to stick a hypodermic needle into my own skin. (I swore I’d never become a drug addict because I could never stand to give myself a shot.)

That first self-injection was fairly early after my RA diagnosis. I’ve learned since then that RA presents us with a number of hurdles.

Read the rest of this post at RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/hurdles/

Sally Fields and Me

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Sally Fields is credited (and misquoted) with the phrase, “You like me. You really like me.” (What she really said was, “You like me, right now, you like me.”) Misquote aside, I know how she felt when I heard that once again, Healthline has nominated rheumatoid-arthritis-bestthis blog as one of the best RA blogs for 2015. (This has happened each year starting in 2012.)

And although I’m also fond of quoting Groucho Marx who said, “I wouldn’t want to belong to any club that would have me as a member,” I’m thrilled once again to be part of the chosen few along with many of my favorite other RA bloggers.

This is actually a contest. If you click the link on the graphic, it will take you to the Healthline site. Rather than wasting time and energy voting for me, I would rather you explore some of the many marvelous voices out there in the community of chronic disease. I do every year and have always found both joy and inspiration.

Thank you, Healthline, for the nomination. And thanks to each of you who visit my blog and find something of value here.

Communicating with your Doctor — Be Your Own Advocate

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I posted earlier about the discussion we had at the recent Joint Decisions’ Empowerment Summit** concerning communicating with your doctor. The clever people at Joint Decisions and Tonic Life put our discussion points into a great infographic. Both the blogger and their blogs are listed so you can get further acquainted with this talented group of people (if you aren’t already). I hope this is helpful for you as you prepare for your next appointment.

Joint Decisions 2015 Empowerment Summit Infographic_Be Your Own Advocate...

**Janssen Biotech, Inc., paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.

The 12th Day of RA (2015)


My previous versions of this were focused solely on RA. Of course RA doesn’t happen in a vacuum and you have to fit everything else in your life in and around miserable RA symptoms (and treatments). The holidays make this even crazier. So this year’s rendition tries to do just that — fit in all the holiday craziness in with managing the disease. (Oh, my.) I hope that you enjoy it and that you and yours have a joyous holiday season — whatever that means to you.

The 12th Day of RA

On the twelfth day of Christmas, my RA gave to me:

Twelve cookies baking,

Eleven cards addressing,

Ten fingers flaring

Nine co-pays pending

Eight gifts to be wrapping

Seven cousins coming

Six labs a drawing

Five hours sleep!

Four aching joints

Three shopping days

Two swollen knees

And a wish for a healthy New Year!

 

Update Updates

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I guess progress is being made, although sometimes it feels more like paint drying. Thought I’d bring you up to speed with some of the updates I posted previously.

  • I had my liver biopsy last Friday. It couldn’t have been easier although while I was sedated, I certainly remember the entire procedure. The worst part was having to lay still for three hours afterward to make sure I hadn’t sprung a leak. I can’t lift more than five pounds for two weeks nor can I drink alcohol for a week afterward. Both of these can be challenging during the busy holiday season. I haven’t gotten the results yet, but I am optimistic that there won’t be anything serious showing up.
  • The biopsy results are important because my rheumatologist won’t discuss altering/increasing my RA treatment plan until they come back. This is discouraging because I feel like I’ve been in a flare for the last year. I’m just thankful that I made the decision to “retire” a few weeks ago.
  • I had my second Actemra infusion two days ago. The only issue is that they used up all my “good” veins during the liver biopsy so starting the IV for the infusion was a bit more challenging than usual. I didn’t have the headache I had last time, but I’m still not feeling that it’s making a dent in the pain and swollen joints.
  • Started physical therapy for my knee. Turns out that it might be my IT band instead of my knee. The pain has been where the IT band connects to the knee and when the therapist was working on it, it was painful all the way up to my hip. It would be great if that were the case. Even though my recent knee check up and X-rays show a close-to-perfect replacement, I’ve been worried that there really was something amiss. IT band problems can be treated successfully.
  • I don’t think I mentioned that I have been having heel pain and was referred to a foot and ankle doctor. It doesn’t appear that there is a full tear of the Achilles tendon or other “urgent” situation. The doctor injected my heel which provided some relief for a couple of days, but I think there is an MRI and further investigation in my future.
  • I am still navigating the treacherous waters of COBRA and changing health insurance companies. It is, literally, a daily battle of checking websites, emails to my previous company’s HR department, calls to insurance customer service staff etc. The issue is that I need to my physical therapy appointments next month approved along with my Actemra infusion and right now there is no evidence that I have insurance starting January 1.
  • And the disability claim process continues to drag out. This has also taken hours of my time on the phone and sending materials. Just when I think they have everything, I find out they have gone back to my doctors for even more information. I guess the good news is that at least, to this point, they haven’t denied the claim.
  • I finally get out of my back brace this week (after three months!). That’s a great holiday gift.

I am hopeful that all these things are resolved before the end of the year. In the meantime, my best wishes to you and your family for a wonderful holiday season. Thanks for checking in.

The Power of Words

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I recently read an interesting article about how humans formulate words that connect and convey internal physiological/physical situations to the outside world. A couple of early examples would be the infant crying when they are hungry or in pain morphing into the toddler who can actually say “hungry” or “hurt”. Humans also learn words that convey external situations to internal feelings, like “hot”.

It struck me that this process does not stop as we grow. In fact, this early development helps define our reaction when we hear others say those words. The word “hurt” may conjure up the pain of a skinned knee for one person compared to more traumatic pain for someone else.

In addition, I realized we continue to connect both our emotional and physiological feelings to specific words as we have new experiences. For example, since my RA diagnosis seven years ago, I’ve had conversations with or read many discussions by patients concerning the infusion experience. The words used by (and therefore both the emotional and physiological impact on) patients varied greatly depending on the infusion environment. Probably the most extreme examples are the experiences discussed by patients who undergo infusion in a highly clinical environment, often side-by-side with terminal cancer patients who are also receiving infusion treatments. Compare this experience to patients who receive infusions in a more private, comfortable setting. The people in the clinical environment use words like stressful, depressing and discouraging. Those who receive their infusions in the other setting use words like calm, easy, and reassuring. I can’t help but believe that the same word, “infusion”, conjures up a completely different response and imagery from the two groups of people. Given the demonstrated effect of both stress and positive thinking on medical outcomes, I can only wonder if the less-clinical environment also helps support a more favorable response to the medication.

Read the rest of this post here: https://rheumatoidarthritis.net/living/the-power-of-words/

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