Life Through RA-Colored Lenses

Tags

,


Once you have an RA diagnosis, it changes the way you look at things. Sometimes we attribute things to RA that might just be overwork or getting older. But then again, it might not. Below is a reprise of a post I did a few years ago. I think it’s still true and hope you enjoy it. Thanks for checking in.

****************

If I Had a Hammer

There is an old saying that goes something like, “If the only tool you have is a hammer, then every problem is a nail.”

I have a good friend who, among her other amazing qualities, is extremely knowledgeable about hormones and has published a book that empowers women going through menopause toward self evaluation and self help (What About Menopause Don’t You Understand? http://hormoneguru.com/). In the past year that I have had both my hip and my shoulder replaced, she lost her husband to colon cancer and became a breast cancer survivor, so she has had more than a crash course. It is not uncommon that our conversations drift into medical discussions. When I comment on a new symptom or ache, she offers insight into which conditions might be causing it and which hormones or natural supplements might ease the situation.

While I certainly respect her knowledge, and I love her for caring about me, I know that not all things are hormone related, just like I know that not every one of my aches and pains is related to RA.

Or are they?

That’s one of the toughest things about this condition for me to deal with. It would be easy to define myself  via RA, to scrutinize each new creaking joint and ache through the lens of the disease. However, I suspect the stiff, aching neck and shoulders has more to do with working 14-hour days on a computer than a sudden progression of RA. On the other hand, I also don’t doubt that working long hours, hunched over a keyboard aggravates already inflamed tissues, perhaps giving the disease an edge it wouldn’t have if I had a different life.

I recently read another blog where the author took umbrage about people flippantly saying their aches and pains were arthritis when those of us who truly have the disease understand the difference. On the other hand, how many of us had years of unresolved aches and pains before the disease manifested itself enough to be diagnosed? Who is to say that those minor aches and pains suffered by others aren’t the harbinger of something more insidious?

But back to the point. Having a diagnosis puts a different perspective on your life. Whether you want to or not, you evaluate any change in your joints as a person with RA, which is much different from a person without it. I have to decide whether the pain in my feet today is the onset of a flare, a result of the changing weather, or perhaps wearing a different pair of shoes yesterday. People who don’t have RA don’t think about those things. They have tools other than hammers and look at life through different-colored lenses.

Remission — Now What?

Tags

, ,


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

Tags

, , ,


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

Tags

, ,


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

Tags

, , , , ,


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

Tags

, , ,


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?

Tags

, , , , , ,


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/