Remission — Now What?

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I personally think that if you achieve remission, the first thing is a major celebration. The question becomes what happens after that? For most RA patients, a major part of our life is spent coping with the disease and managing it – including medications, doctors’ appointments, insurance claims, uncertainty in scheduling work and family life, and just figuring out how we feel every day. Does that all go away if you go into remission?

I found some interesting and somewhat unexpected things as I researched the current thinking of treating RA patients. Read the full article at RheumatoidArthritis.net.

@Hurt Blogger on #ChronicPain

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Britt Johnson, aka Hurt Blogger (www.thehurtblogger.com) was a key panelist on Medicine X’s panel exploring pain management. Please read the story here: http://scopeblog.stanford.edu/2016/09/18/the-opioid-crisis-medicine-x-panelists-explore-the-complexity-of-managing-chronic-pain/

Thanks to Britt for being the patient’s voice in this critical discussion!

Finding a Pain Doctor

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I got an interesting comment from Open Doctor on one of my posts concerning the recent restrictive guidelines for prescribing opioids. It was information on a website (http://www.opendoctor.io) that allows you to search for doctors, not only for pain but for a number of conditions. The possibly unique thing about this site is that it lists the doctor’s opioid prescription experience.

Let me just say that I am providing this information as just that — information. Other than taking a cursory test drive of the site, I know nothing about the site, how the doctors are listed or qualified or how accurate the information is. But in an effort to provide those that visit my blog with a wide range of information, I am happy to pass it along so you can add it to the mosaic of resources that you might find useful.

I found it a bit clunky to use, but I did eventually successfully come up with an extensive list of doctors (both MD’s and DO’s) in Dallas that included information on their opioid prescription experience. I would say that a number of these doctors were surgeons who appropriately prescribe pain medications for their post-surgery patients and who, therefore, might not be candidates for overall pain management. This was, no doubt, a result of the search terms I used and you could probably come up with a more defined list.

If someone were to ask my advice on finding a pain doctor, I would first recommend talking to your existing medical team for recommendations. Ask your PCP, your rheumatologist, and/or any orthopedic surgeons on your team.

As a second resource, many health insurance websites have a “find a doctor” function on their website. This is a great tool because you can be assured that the doctors are within your insurance network which can be important.

As a third resource you can use a simple internet search. I googled “Pain Doctors in Dallas” and got 754,00 hits. If you choose this more general route, I would suggest that you do some due diligence on the qualifications of the physician you choose.

The more I research the opioid situation the more I am amazed. It’s not only the opioid-related deaths, in 2012 there were more than 700,000 hospital stays related to opioid overuse in the US. That’s nearly 2000 hospital stays every single day.

The problem I have is that the statistics being used by health, legislative and law enforcement bodies lump the illicit opioids (including heroin and other opioids obtained without a prescription) with the legitimate pain management used by people who live with chronic pain. The guidelines I’ve seen that outline recommended non-prescription pain methods have a lot of merit. However, the people I know with chronic, debilitating pain have already tried all of those methods — exercise, meditation, acupuncture, etc. If they worked, they would happily use them. Unfortunately for many, the only thing that stands between them and a life of disabling misery is pain medication.

I applaud the efforts of recognizing that we need to take control of opioid abuse. But we cannot and should not implement those efforts at the expense of the most vulnerable in our midst — those that live in chronic pain.

Thanks for checking in.

Updates

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Thought I’d provide some updates with what’s going on in my life at the moment:

  • Somehow it completely slipped by me that I’ve been nominated by WEGO Health for “Best in Show.” (Darn that overactive spam filter!) Apparently it’s something that you can vote on, but there some other amazing advocates that have been nominated. For truly inspirational stories and to vote for someone really deserving, see the list of nominees here: https://awards.wegohealth.com/nominees. Thank you WEGO!
  • I’m getting pretty discouraged. My current Actemra infusions don’t seem to be working well any more. My rheumatologist also cut back my methotrexate dosage in an effort to overcome some of the fatigue I’ve been having. I’m still fatigued but I am really missing the extra MTX. So overall feeling crappy. As I told a friend: there used to be days when I didn’t get out of the house. Now there are days when I don’t get out of bed.
  • My refrigerator has been out of order for over a month. We’re subsisting on an “Plan B” apartment-size fridge in our garage. I’ve had three technicians visit. Still not working. Finally received a part today that will hopefully solve the problem. Now all I need is the technician to come install it. As it stands, they’re not scheduled back until next week but I am hopeful I can get someone to show before then. Sigh. It’s not only difficult to cook, both my husband and I have some very expensive medicine that needs to be refrigerated. If the “stunt fridge” fails, then we could be out a couple of thousand dollars. At least the fridge repairs are covered by warranty.
  • Next week is my final check up on my gastrocnemius contracture surgery as well my one-year (and final) check-up on my second spinal fusion surgery. It will be nice to get both of those items checked off. I’ve recovered remarkably well from the gastrocnemius contracture surgery, although I’ve been having a lot of pain inside the ankle joint. I suspect it’s because the ankle is now moving differently/more freely than it was, but I’m planning on asking the surgeon to take an X-ray while I’m there just to make sure something hasn’t gone wonky. (“Wonky” is a highly technical medical term that many of you will recognize. Lots of people with RA have wonky bits.)

Other than that, life goes on here in Dallas. It looks like our highs will finally drop into the 80’s next week so I am hopeful that we will finally start getting some cooler fall weather.

I hope that whatever’s going on in your life brings a smile to your face. Thanks for checking in.

Thank You, Lara Spencer

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Lara Spencer is a well-known television personality. Among other things, she covers pop news and entertainment for the highly rated Good Morning America show and hosts the reality show Flea Market Flip.

An athletically trim, bubbly person, last Thursday Lara announced on national television that she would be undergoing hip replacement surgery at the young age of 47. She had the surgery over the weekend and I hope that her procedure and recovery are as wildly successful as mine were. (The first words out of my mouth after my hip replacement surgery were, “This feels so much better.”)

Near the end of the seven-minute segment (about minute 6 — see below), Lara spent some time talking about how all-consuming chronic pain can be. How pain can take over your life and how it affects you mentally, physically, and emotionally.

Thank you, @LaraSpencer.

It seems that the only time we hear about famous people and pain is when they’ve checked into a rehab facility because they’ve abused opioid drugs. Having a high-profile individual like Lara Spencer talking about the realities of chronic pain in such a public forum is amazing. It brings the incredible suffering caused by chronic pain to the forefront and makes it harder for legislators to undermine its devastating effects. (Thereby passing legislation that denies much-needed medication to those that desperately need it.)

The thing about famous people is that they are, in fact, people. Statistically, they should suffer chronic pain just like the rest of us. I understand that they work to have a “perfect” persona. But if we could get more brave, famous people like Lara Spencer to speak about chronic pain, perhaps we could reverse the travesty of the current environment that makes ongoing pain medication an endangered species.

Thank you, Lara Spencer. Sincerest wishes for a full recovery from someone who has been through it.

Thanks for checking in.

The segment can also be seen here.

 

 

What About the Patient in Pain?

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Meet CARA. CARA stands for the Comprehensive Addiction and Recovery Act which was overwhelmingly passed by Congress then signed into law by President Obama in mid-July. The legislation is designed to empower both medical professionals and law enforcement officials with more tools to help drug addicts. There is, predictably, a lot of discussion about this act (particularly in an election year), not the least of which is how the now-approved programs will be funded. But what concerns many of those in this country who suffer from a chronic disease is that it appears to focus on those who abuse drugs with little regard to those with a legitimate need for pain relief.

Read the rest of this article at: https://rheumatoidarthritis.net/living/what-about-the-patient-in-pain/

For Me, I’m Doing Okay

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If you have a chronic illness, you learn to hate that innocuous question, “How are you?” I have found myself caught between smiling and saying “fine” and biting both my tongue and the urge to dump TMI about how I really feel. Now when friends ask, I’m more likely to respond, “For me, I’m doing okay.” Anyone who knows me knows that there is ALWAYS something going on, but if I’m at least on an even keel and dealing with things, I’m doing okay.

That’s pretty much where I am at the moment. In fact, I had lunch with some friends over the weekend. As we commiserated with each other about the current challenges in our lives, one of the remarked to me, “Who would have ever guessed you’d be the normal one?”

But that’s pretty much where I am. Life has been good lately:

  • My recuperation from gastroc contracture surgery has been remarkable. I’ve been released from physical therapy a full two weeks early and I only have one final, follow-up appointment in about a month with my surgeon before he discharges me completely. I can tell I have a bit of stretching and strength building left to go but I really am doing great.
  • Very unexpectedly my Social Security disability claim got approved so I am now receiving full benefits. I (1) didn’t expect it to be approved at all and (2) didn’t expect it to be approved this soon. The last time I checked, they told me I should get a determination by the end of October and that might just be a notice of review extension.
  • I haven’t been feeling like my RA has been well-controlled lately. I had my regular rheumatology appointment this past week and my rheumy made some minor tweaks to my treatment program. Interestingly, to help combat the severe fatigue I’ve been feeling, she reduced my methotrexate dosage. I’ve been on a high level and one of the side effects can be fatigue. Then she added in Mobic/meloxicam which is an NSAID to help control pain as well as inflammation. She correctly pointed out that I have osteoarthritis as well as RA and I’ve done well on meloxicam in the past. I just started this new plan so it’s too early to know whether these changes will work. However, the old situation wasn’t working so I have hope.

So, yes. Compared to a “normal” person, I’m not great, but for me, I’m doing okay.

I hope you are, too. Thanks for checking in.