Miscommunications Between Doctors and Patients

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As a member of Joint Decisions, I’m excited to tell you about a Facebook Chat they’re having tomorrow evening, 7/21 at 7 pm Eastern. It’s entitled, “Seeing Eye to Eye: Remedying RA Miscommunications Between Doctors and Patients,” and features Dr. Ellen Field. To join the Facebook chat, visit the Joint Decisions page at the designated time and respond to chat questions by sharing your thoughts in the post’s Comment section. Hope you can attend!

Joint Decisions Facebook Chat 7.21

  • Want to stay up to date on all things #JointDecisions? Sign up for their emails po.st/E28voF
  • Don’t miss another #JointDecisions event—visit their website for a full list of upcoming chats: po.st/DuDXzl
  • Lots of great #JointDecisions events coming up. Don’t miss them! po.st/DuDXzl

 

Dealing with Drug Side Effects

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Drugs can have unintended consequences. We want them to do the good stuff to fix the problem we’re having but unfortunately, they usually come along with things we don’t like. I’ve been on several drugs since my RA diagnosis eight years ago, so I’ve seen my share. The good news is that I’ve found that many of these side effects are temporary as your body gets used to taking a new drug and they will often fade completely or be less bothersome over time. Here are some of the more common side effects and how I’ve dealt with them: (read more at RheumatoidArthritis.net)

 

 

Killing Each Other Isn’t the Answer


By all accounts, the protest was peaceful. Both the officers there to assure order and the people involved in the march commented that it was peaceful. Based on video footage, there were people of all races in the crowd.

Then the shots rang out and a dozen people were hit, five of them fatally.

The officers that were shot were not involved in the incidents in Minnesota and Baton Rouge this week. They were there to help ensure the protesters right to Freedom of Speech. Why kill those who are ensuring your freedom?

I do not know what the answer to race relations in our country is. I have grown up in diverse populations all my life and have had friends of all races, religions, and sexual orientations. I have found both good people and idiots in all walks of life. I tend to look at the individual person so it’s hard for me to fathom those who categorically dismiss whole populations because of a difference of skin tone, or how they pray, or who they love.

But the one thing that I do know is that killing each other is not the way to bring us together.

And while the recent high-profile deaths of African Americans by white police officers are seen by many as unwarranted, the killing of Dallas police officers last night was a deliberate act of terror. There is a difference. But the fact is, both need to stop, and more open discussion needs to happen.

My heart breaks for the victims and their families as well as for my city and my country. We are better than this.

Surgery +13

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Two weeks ago tomorrow I underwent gastrocnemius contracture surgery with a platelet-rich-plasma injection (PRP). Today was my first surgical follow up and the doctor thinks I’m doing as well as I think I am (which is always a good thing).

I traded the stitches in the back of my calf for a series of steri-strips that will fall off in a couple of weeks. While everything is still colored brilliant bruise hues of purples, blues and greens, everything seems to be healing nicely. The really big news is that while I still have to wear my (stupid, hot, uncomfortable) boot during the day and generally walking around, at night I can switch to a lightweight splint that fits on top of my foot. I haven’t really had any pain from the surgery, but the boot is making me crazy, causing pain in my heel and with a Morton’s neuroma I have in that foot. Consequently I wake up frequently at night from that pain. Losing the boot gives me hope for a decent night’s sleep.

I think I’m making good progress. I can walk around the house without crutches or a cane, although on the few occasions I’ve been out of the house, I’ve taken a forearm crutch with me, more for stability than really needing the support.

I’m still a few weeks out from physical therapy, but I’m to start some gentle ankle pumps and rotations, just to help keep things limber. I’ve also been cleared to drive, which is great. My husband has been acting as my chauffeur and I’m sure he’s relieved as well.

The other news is that the doctor has asked me to further delay restarting my RA meds. If it were just a question of wound healing, I’d probably be okay to start back with my Actemra infusion and methotrexate injections. My next infusion should have been this week and I’ve been off methotrexate for three weeks now. The issue is that there is not a lot of data of how these drugs interact with the PRP. And since we don’t want to go to all the trouble of doing the injection, we don’t want to undo it by getting anxious about restarting the RA medication. However, the doctor did approve a low-dose of prednisone in the meantime. Historically, this has been enough to keep me from going into a serious flare, at least for a short period. (Fingers crossed.)

So all in all, a good report. I hope whatever reports you have in your life are also good news. Thanks for checking in.

 

Share Your Tats!

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I apologize that I am very, very late getting this information to you, but Healthline.com is once again featuring a slideshow of rheumatoid arthritis inspired tattoos. Last year’s collection can be seen at: http://www.healthline.com/health-slideshow/rheumatoid-arthritis-tattoos#1

As I am very late, I would encourage to respond quickly. The information (with an email link) is below:

If you’d like to share the story behind your RA tattoo, email us with the subject line “My RA Tattoo” and be sure to include: a photo of your tattoo, a short description of why you got it or why you love it, and your name.

Post-op Update and Other News

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Today is Monday and my Achilles tendon surgery was Thursday, so I am well on my way to moving out of the right-after-surgery phase into the gosh-isn’t-recovery-boring part.

Other than starting a couple of hours late, surgery went pretty well. Because my calf muscle has contracted, my foot doesn’t flex as it should. The solution is to make small incisions in the Achilles tendon, allowing it to lengthen and permitting the foot to flex normally. The foot is held in a proper position by a surgical boot for six weeks as the tendon heals.

The actual surgery site hasn’t caused any pain. I had some pain medication after surgery and a couple of pain pills the first night to help me sleep and then nothing but a few Tylenol since then. However, there have been some unanticipated “side effects” of the surgery:

  • Since they placed me on my stomach for the surgery, they inserted a breathing tube to ensure my safety during the procedure. My major complaint after the surgery was a really sore throat. (Trust me, the dryness caused by Sjogren’s and breathing tubes don’t mix well.)
  • I have really bad shoulders and using a walker is really painful. One shoulder has been replaced and the other one has had two rotator cuff surgeries. I was not able to put any weight on the foot for the first three days and placing that kind of stress on my shoulders made it very difficult/painful to get around. We’ve since rented a wheelchair for longer road trips (such as to the kitchen), which helps, but I have some narrow doors in my house so I am still reliant on the walker for certain destinations — like the bathroom. I am able to start putting some weight on the foot which is helping a lot. I am hopeful that by the end of the week I can graduate to a cane or at least my new forearm crutches.
  • I have a Morton’s neuroma in the surgical foot. I had actually thought about talking to the surgeon about removing it during surgery (I had the one in the other foot removed several years ago). But it’s small and generally not very troubling. However, being in a surgical boot puts constant pressure on the bottom of your foot — kind of like being on your feet 24 hours a day — which aggravates the situation. The major pain I’ve had has been associated with the neuroma rather than the actual surgery.
  • I’ve discovered all kinds of barriers in my house. For example, I have a great walk-in shower with a bench but there’s a threshold going into the shower. Hopping over this threshold getting in and out of a wet shower is, frankly, terrifying. Now that I’m able to put a bit more weight on my foot, I’m hoping these barriers will be less of an issue.

My husband has been great looking after me and my BFF came over the day after surgery to “babysit” so my husband could take care of some things at the office, so I’ve had some excellent care. (Thanks, Pat!) Today is the first day on my own, but I’ve demonstrated that I can successfully make it to the kitchen and the bathroom and I have a pocket to carry my phone with me at all times, so I should be good to go. (Except that I am already tired of movies and books … and don’t yet have the attention span for a lot of writing. Bored. Bored. Bored.)

In other, more important news, I hope that you will join me in holding friend and fellow blogger, Irma (https://beatingrheumatoidarthritis.com/2016/06/25/a-heart-too-broken/) in your thoughts and prayers as her husband recovers from a severe heart attack and the resulting complications. I’ll get by just fine, but Irma and her family need all our support.

Thanks for checking in.

 

Can Probiotics Help RA?

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There is a lot of discussion (civil and otherwise) about diet and inflammation. There has been some interesting studies lately that indicate that probiotics can help reduce inflammation overall and RA symptoms specifically.

Read more in my recent post at http://www.RheumatoidArthritis.net:

 

Can Probiotics Help RA?

The War on Opioids Becomes Personal

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My BFF and fellow blogger Wren has just posted a very personal account on how the now-radical war on opioids can affect the patient — in this case her: https://rheumatoidarthritis.net/living/the-war-on-opioids-comes-home/

The following is the comment I left on the article and I invite you to read both her article and peruse the Academy of Pain Management Physicians’ position papers. Anyone with a chronic painful condition will be directly impacted by the FDA’s new initiatives. We will be the victims.

A major part of this situation is that the FDA and professional organizations are enforcing this war on opioids through pressure on the physicians who prescribe the drugs. While physicians were once patient advocates for pain medication, they are now in the position of potentially protecting their professional licenses by only prescribing the drugs for severe circumstances such as post-surgical and cancer pain. Your strategy of seeing a pain-management physician is a good one. The American Academy of Pain Management Physicians (which is a strong voice of sanity in this seemingly one-sided discussion) has a number of position papers that invite reason and compassion as well as the appropriate prescription of opioids. They can be found here: http://www.painmed.org/press/position-statements/

 

 

Insurance Companies, Privacy and Boundaries

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I wrote about this subject a while back when I discovered my insurance company had listed all my lab/test results for the two-year period I had been covered with them on their website where I could refer to them. https://carlascorner.wordpress.com/2011/04/13/privacy-what-privacy/ And I also assume that the several thousand people who do customer service work for the insurance company could see them as well. I questioned (as I still do) the insurance company’s right to the information (and when/where I gave it to them) and certainly their right to publish it in such an open forum.

Let me just say that I am and will eternally grateful for insurance companies. Without them, my health and quality of life, which is dependent upon affordable health care, would be in a far different state than it is today. I further highly respect their fiscal responsibility to try to control health care costs. But I tend to think the boundary line needs to be drawn at approving procedures and medications, not being privy to personal test results. Or giving medical advice (which is the doctor’s job).

This has pissed me off come up again because I just received a letter from my current insurance company. It’s actually entitled a “Care Consideration” that’s an alert about something that might be improved. In this instance, they’re recommending that I get a Hepatitis B vaccination. I’m not exactly sure why they think this — they didn’t say. I suspect that it’s because one of my liver enzyme tests is slightly elevated and has been for some time. Between being a bit overweight (which translates into fat in the liver) and taking some very strong RA drugs that can affect the liver, you can pretty much anticipate things to be a lot more out of whack than they are. My gastroenterologist, my rheumatologist, and my primary care physician (PCP) have all weighed in on my liver enzymes and I’m monitored with lab work every four weeks. NONE of my doctors have said a word about getting the Hepatitis B vaccine. So where does the friggin’ insurance company come off giving me medical advice?

And then I kind of laughed because I immediately wondered if they would even cover it, even though they recommended it.

As it turns out I have an appointment with my PCP next week for the medical clearance for my upcoming ankle surgery. Being the good patient I am, I am taking the “Care Consideration” letter along with me. The discussion will no doubt cause my blood pressure numbers to go through the roof. I wonder what my insurance company will say about that?

I hope whatever care consideration there are in your life bring you a smile. Thanks for checking in.

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