25 Pounds (and Counting)

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I use this blog to whine a lot, so I thought I would also use it to brag a bit. Over the weekend, I crossed the 25-pound weight loss mark. While I still have a way to go, this is the least I’ve weighed since 2004.

Based on the gradual weight loss I’ve experienced, I expect it will take the rest of the year for me to get down to my goal weight. But I didn’t put all this weight on overnight, so I know I’m not taking it off overnight either.

When I hit the 20-lb mark at the end of March, I did a post at RheumatoidArthritis.net that talked about the decision and the process. If you’re interested, you can read it here: https://rheumatoidarthritis.net/living/weighty-matters/.

Thanks for let me brag on myself and thanks for checking in.

Gastrocnemius Contracture Surgery with PRP Injection

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Quite a mouthful, huh? My left calf muscle is contracted which prevents my foot from flexing correctly which means I don’t walk correctly and also have pain in the calf and ankle.

You can read a more detailed discussion of the procedure here, but basically the surgeon makes small incisions in the Achilles tendon which then heals in a lengthened state. As part of the surgery, I’m having a platelet rich plasma (PRP) injection into the tendon. This kind of therapy has been shown to benefit healing in tendon injuries and repairs. They will spin down some of my blood, extract the platelets from it, mix them with some of my plasma and inject this into the tendon.

Then it’s a few weeks in a boot and six weeks of physical therapy and hopefully we’ll have solved another problem.:-)

I’ve done the steroid injections, the physical therapy, wearing a split to sleep in at night, putting a lift in my shoe, stretching exercises and every other conservative treatment that might work with little to no result.

I’ve got about a month to get ready for the surgery which is scheduled close to the end of June. Of course, having RA, I have to coordinate my treatments and medications to make sure I don’t cause healing or infection issues.

There’s no way to really determine what causes this. It’s probably more related to wearing 3″ heels for decades than anything to do with RA. But RA certainly doesn’t make things easier.

I want to thank Kim for her detailed posts at http://si-instability.com/my-endoscopic-gastroc-soleus-recession-surgery/ which gave me some great first-person insights as to what to expect during surgery and recovery. Finding this kind of information written by patients helped me when I was first diagnosed and went through hip replacement surgery and inspired me to start this blog in the hope of paying it forward.

I hope whatever surprises your calendar holds are happy ones! Thanks for checking in.

(Not) Communicating with your Rheumatologist

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I used to have a sign on my desk that said something along the lines of,

“I know you believe you understand what you think I said, but I’m not sure you’re aware that what you heard is not what I meant.”

Being a professional communicator for the majority of my career, I can tell you that it’s both about putting out the right message AND making sure that your audience hears and understands it. It’s amazing how a conversation between two people can be understood so completely differently by the people having the conversation. This happens between spouses, boss and employees, and certainly parents and teenagers.

IMHO, miscommunication is never more critical, however, than between doctor and patient. The amount of this miscommunication to me is astounding.

Earlier this week Pfizer issued a news release about the results of their latest findings through its global RA NarRAtive survey that assessed the quality of physician-patient communication and its relationship to RA disease management. The survey involved more than 1,700 rheumatologist in 15 countries and demonstrated disconnects between patients and physicians across multiple aspects of RA disease management.

What’s weird is that both physicians and patients agree that better communication means better disease management, yet significant gaps exist. I invite you to read the release and learn more about the RA NarRAtive via the links above, but here is an infographic that summarizes many of the important findings:

RA NarRAtive

Jack and Carla’s Great UK Trip of 2016

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We’ve officially been back from the UK for two weeks and now that my time zones are finally back in sync, I thought I ought to post about the trip. First of all it was a great vacation but it took a lot out of us physically. My husband and I are finally at the point that this is probably the last big European vacation we’ll take. (We have a small trip scheduled for Thanksgiving, but would probably cancel that if it wasn’t so costly to do so.) After this, I think you’ll find us staying on this side of the pond and laying on the beach.

London

London

We flew over on our 20th wedding anniversary. Our first stop was London where we basically took a two-night breather before heading on to Edinburgh, Scotland. Last year we went directly through London on to Florence, Italy and it almost did us in. We learned that lesson well. This year, we built in some strategic “rest” days throughout the trip.

After the initial “landing” in London, we took the train up to Edinburgh. Travel by train is so much easier than dealing with airports and planes and it gave us the opportunity to see some of the UK countryside that we hadn’t visited before.

The weather was great and once we got out of the London area into the countryside, the landscape

UK Countryside

UK Countryside

was dotted with sheep. There were mother ewes, still fat in their winter covering of wool, along with scores of frolicking baby lambs. The land got more hilly the further north we traveled.

 

In Edinburgh, we stayed in a newly developed area called the Quarter Mile. Along with our hotel, it is filled with restaurants and shops and is close to both the University and one of the major parks in the city. Close by is Greyfriar’s Kirk, where Greyfriar’s Bobby is buried.

Edinburgh is fairly compact and even though we were close to easy bus routes, it was also only a 20-minute walk to the center of town which is filled with amazing history and culture.

Greyfriars with the Edinburgh castle in the background.

Greyfriars with the Edinburgh castle in the background.

 

Edinburgh is amazingly hilly and steep. We planned more than one excursion based on whether we were going uphill or downhill. The wonderful, hardy Scots didn’t seem to have any problems negotiating the terrain, but we old, fat Americans huffed and puffed our way through our visit.

Stairs are a common site in Edinburgh

Stairs are a common site in Edinburgh

 

Midway through our stay in Edinburgh, we took the train to Glasgow for the day. You don’t notice it so much in Edinburgh, but once outside the area, you realize that Scotland really is a different country. Signs, like this one at a train station, start showing up in the native language. I don’t completely understand the differences between Gaelic, Scottish, and Celtic, so I won’t try to explain. If you live there, you understand.:-)

Differences in Language

Differences in Language

After five days in Edinburgh, we flew back to London for the rest of our vacation.

We stayed in the wonderful St. Ermin’s hotel where we stayed last year. It’s convenient to everything and the hotel and staff are lovely.

The "Bee Hotel" at St. Ermin's

The “Bee Hotel” at St. Ermin’s

To us, London is a lot like coming home. We ate at some of our favorite restaurants and visited some of our favorite sites. We took in a couple of photography exhibitions — one at the Natural History Museum and one at the Somerset House on the Strand.

Olympic Village, London

Olympic Village, London

The real highlight of the trip, was getting to meet the great Pollyanna Penguin. Polly, an RA advocate in the UK, has chronicled this meeting much better than I could do here. We took a train up to Norwich, a town close to her, and she met us for lunch and a walk through the market. It’s amazing how much we have in common across the pond, but how different things are due to National Healthcare vs. health insurance.

If there were any disappointments, it was that we didn’t make the day trip to Brussels we had planned. Brussels is only a two-hour train trip from London, but due to the recent terrorist attacks, we opted to skip that trip. It was a good thing because I took the day as a “rest” day, which I badly needed. There were days on the trip where I walked almost six miles. My joints aren’t used to that kind of activity and I was really feeling the extra stress even with my traveling companions, prednisone and Voltaren gel.

It was a wonderful, wonderful two-week trip. If it’s going to be our last to the UK, then it was a great one to go out on. And while it was filled with enjoyment and adventures, it was also a real wake-up call about the state of my RA. While I make it through my day-to-day life, I seem to have gone from “absolutely will” to “probably not” when considering many of the more strenuous things I used to do. All that being said, I’m glad I got to do them when I was able.

I hope whatever adventures you’ve had in your life have been amazing. Thanks for checking in.

Well, Duh! Why “Obvious” Studies Are Important

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Sometimes you read something and you just want to say, “Well, duh!” because you think it’s so completely obvious you wonder why it’s making headlines in the first place.

The headline of an article I read recently is, “Persistent RA Activity Predicts Major Surgery — Researchers stress importance of securing low disease activity”. To an RA patient, achieving low disease activity (or even remission) seems not only obvious, but the Holy Grail of treatment objectives. It’s almost unbelievable that anyone would think otherwise. And if RA isn’t controlled, a logical outcome can be major joint surgery. So why does it take a major study to state the obvious?

There are some very significant reasons for this.

Read the rest of this article here: https://rheumatoidarthritis.net/living/well-duh-obvious-studies-important/

Codeine: A UK Perspective

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I just returned from a wonderful trip to the United Kingdom that included both England and Scotland. I’ll post more about those adventures and meeting up with the great Pollyanna Penguin in a later post.

As much as I think the UK and the US are similar, I am simultaneously surprised and delighted by the differences. Some of the things are subtle and you don’t notice them at first. Eventually I realized that I hadn’t seen a single television commercial for any prescription medications at all. (I am assuming that has a lot to do with nationalized medicine.) Then I realized that I seldom even saw commercials for over-the-counter drugs. But there was one that really caught my eye, and that was for Syndol, which is a pain-relief tablet that contains 8 mg. of codeine. Yes, codeine. That close cousin to hydrocodone that Healthline.com reports is abused more than any other drug in the United States. In 2014, the FDA expanded regulations on codeine products and nearly all require prescriptions today.

To satisfy myself, I went to the local Boots (a popular British pharmacy chain) and purchased a small box of the product. It was about $5 US for 10 tablets. It contains 500 mg. of paracetamol (the UK equivalent of acetaminophen or Tylenol), along with 8 mg. of codeine and 30 mg. of caffeine to help the drug work faster. Interestingly enough, the medication was recently reformulated – not to adjust the codeine levels, but to remove doxylamine. Doxylamine is an antihistamine and a sedative that is readily available in the US in such products as Nyquil and Unisom.

Syndol

Okay, so codeine is not as strong as hydrocodone, but while it is an effective pain medicine, it is also an addictive opioid. I thought at first that the UK was not as concerned about the war on drugs in general and opioids specifically as the US, but a search of headlines proved that was incorrect. According to BBC, more than 3,300 people died in the UK from drug poisoning in 2014. But of these, the vast majority — two-thirds — (2,248) were from illegal drugs (including heroin and methadone). Of the remaining one-third related to legal and/or prescribed drugs, only 136 were related to codeine. (Tramadol accounted for 248 cases and diazepam, i.e. Valium, was linked to 258.)

I think what strikes me the most is that even with (or perhaps because of) the restrictive national health system in the UK, people who require pain medication are given easy access to not only basic pain medications (such as Tylenol and aspirin) but also more robust medications (including opioids) and the abuse rate from these medications is amazingly low. Syndol is just one example. I also found Voltarol gel over the counter, which is effectively the same as Voltaren gel for which I have to have a prescription in the US.

My point in all this (if there is a point), is that drug regulation needs to not only control drug distribution, but it must play a key role in helping ensure that people who need drugs, including pain medication, have reasonable access to them. Perhaps by looking at other countries’ experience and examples, such as that of our UK allies, we can help achieve that balance.

I hope today is a pain-free day for you. Thanks for checking in.

Mark Your Calendars! / Offline for a While

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I’m going to be offline for a bit (more about this below), but in my absence the folks over at Creaky Joints/Joint Decisions team have some great things going on, so be sure and check these out:

Mark your calendar for the following upcoming events: Twitter Chat 1 Wall photo_CJ

  • #JointDecisions Twitter Chat #1 – Next Tuesday, April 19, 6 p.m. ET: “Balancing RA and Your Social Life: How to Strengthen Your Relationships In Person & Online,” moderated by @CreakyJoints and featuring Amanda John (@AllFlaredUp) and Wren Vandever (@RheumaBlog_Wren)
  • Facebook Chat #1 – Tuesday, April 26, 2 p.m. ET: “Raising a Family While Living with RA,” featuring Mariah Leach (From This Point. Forward.)
  • #JointDecisions Twitter Chat #2 – Tuesday, May 10, 6 p.m. ET: “Helping Others Help You: Communicating with Caregivers and Loved Ones”
  • #JointDecisions Twitter Chat #3 – Tuesday, June 14, 6 p.m. ET: “Traveling with RA: How to Stay on Track Packing, Planning & Preparing,” moderated by @CreakyJoints and featuring Eduardo Flores (@RA_Guy) and Dina Neils (@titaniumtri)

To participate in the Twitter chats, remember to use the #JointDecisions hashtag and follow the co-hosts. 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.

As far as my being offline, as reported earlier, I leave tomorrow to participate in the 2016 HealtheVoices conference in Chicago where I will be joining some of my BFF’s from the RA blogosphere along with some wonderful new friends that represent a wide spectrum of chronic illnesses. *

Immediately after my return, I’m off on a bit of a vacation with my husband to celebrate our 20th wedding anniversary. I may be able to do a random post or two, but no promises until May!

Thanks for checking in.

*Janssen Global Services is paying for my travel expenses for the HealtheVoices conference. All thoughts and opinions expressed here are my own.

Can Pain Be Measured?

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You know that question they ask? The one where they want you to rate your pain on a scale from one to ten. Sometimes there’s even a chart with a smiley-faced “one” that progressively changes into a very unhappy “ten”. I hate that question. First of all, the person asking it may not really care, they’re just filling out a form. Secondly, RA-related pain can vary not only from day-to-day but minute-to-minute, so how do you quantify it?

I once built my own pain scale based around Disney’s Seven Dwarfs. The scale ranged from “Happy”, meaning no pain, to “Doc” when it hurt badly enough to see a doctor, to “Dopey” when I had to take enough pain medicine that I wasn’t functioning very well. It wasn’t any more useful than the “one-to-ten” scale, but it was a lot more fun.

Doctors and patients both will tell you that pain is very subjective. What is extremely painful for one person can be perceived as mildly painful for another. There is a lot of discussion of why this is including individual tolerances for pain as well as associated emotional elements. And while perception really is often reality, it seems that it would helpful for everyone if there were clinical, quantitative ways to actually measure pain.

Which brings me to something very interesting that’s been happening to me.

Read the rest of the post here: https://rheumatoidarthritis.net/living/can-pain-be-measured/

Growing Pains

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plant-seedlingI seem to be growing things.

Unfortunately I’m not talking about yummy vegetables or fragrant blossoms. I’m not even talking about gorgeous fingernails or long, lustrous hair.

I’m talking about weird lumps and bumps and things I’d rather not have.

I have already documented the cysts that showed up on my mammogram. Enough said about those.

Around the same time that those appeared, I was undergoing physical therapy on my left calf. My therapist found a rather large (painful) nodule on my tendon. As she put it, I have nodules where I’m not suppose to have them. Since then, there have been some smaller nodules show up in the same area.

And most recently, I had a sonogram which revealed a small nodule on my thyroid glad. We’re discussing a CT scan or MRI next. Thyroid nodules aren’t that unusual, especially as you get older — except for the fact that I’m on a drug that causes thyroid cancer in animals and may contribute to it in humans.

I will probably have Achilles tendon/ankle surgery in early summer and those nodules will get addressed then if they, in fact, need anything more than to be left alone. I have my annual physical in about a week and we’ll discuss the thyroid concerns at that time (and we’ll have my thyroid labs back by then as well).

Individually, none of this is very concerning and none of it seems to be directly related to RA. It’s just weird that I seem to be growing these weird lumps and bumps all at once. These have all popped up in the last 60 to 90 days.

I hope whatever lumps or bumps show up in your life are the result of wonderful adventures. Thanks for checking in.

HealtheVoices Conference

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I think one of the best things that has come from writing this blog is the connection to other patients and bloggers. It has really underscored for me that today, more than ever before, the patient’s voice is being heard. I am also regularly overwhelmed about HealthEVoices_logo_squarethe commonality that those of us with a chronic condition share. It doesn’t seem to matter whether we have RA or diabetes or Hepatitis-C or what — so many of the challenges (and victories!) are the same.

I therefore count it as a wonderful privilege that next week I am once again able to attend the HealtheVoices conference that brings together bloggers and social media advocates from a wide range of backgrounds and who represent a multitude of chronic conditions. A major focus of the conference is to help us make the most of our patient/advocate voices and help us leverage these platforms to not only tell our individual stories but to better reach those who need to hear them. Of course, I also go to renew the wonderful friendships I have been able to make.

This conference is made possible through corporate sponsorship — sponsors who believe the patient should be a voice in the healthcare landscape. So I thank them for their vision in providing this conference and for the personal support they provide to make it possible for me to attend. Janssen Global Services is paying for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

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