Making a List …


, ,

One of the topics we discussed at the recent Joint Decisions Empowerment Summit** was doctor-patient communication. This is actually a pretty highly charged topic with people on both sides of the equation having strong feelings. I’m sure that the vast amounts of medical information available on the Internet has greatly influenced those discussions. There are no doubt doctors who wish that some of their patients would lose Internet privileges forever while many of us on the patient side are grateful for the vast repository of information at our fingertips that we can access and research.

One of the points made during our Summit discussion is that we generally have about 15 minutes with our doctors on a routine checkup. That’s not a lot of time and so we have to make the most of the time we have. Getting a voice in the conversation (while not disrespecting your doctor) is essential to this goal.

My friend Pollyanna Penguin recently posted about making a list so she would remember all the things she needed to discuss at her much belated appointment ( This is a technique I use as well because it (1) helps set the stage for the areas I need/want to discuss during the appointment and (2) helps me remember things that I might otherwise forget. Other bloggers at the Summit also used lists. I tend to just hand my list to the doctor at the beginning of the appointment. Other bloggers, however, did so stealthily including secretly writing notes on their hands (like they were cheating on a test …).

There are a lot of other things to help support doctor-patient communication. Some of these include:

  • First you have to find a doctor who will actually listen to you.
  • In addition to lists, I also will take use my phone to take photos of swollen joints, rashes, etc. that may or may not be apparent when you actually get to see the doctor. That way I have something to show my doctor during the appointment.
  • If you have a desired outcome from the appointment, start there. Instead of saying (for example) you’re having increased pain, start out saying something like, “I would like to discuss additional pain medicine,” or “Do you think physical therapy would be helpful for ..”, or “Based on my increased pain levels, do you think it’s time to evaluate changing my treatment plan…” The doctor may not, of course, agree with you, but at least there’s a start to the conversation and the doctor knows which option you prefer.
  • Be specific if you can. Don’t just say your pain levels have increased, indicate where and whether the pain is new or simply worse in the same areas.
  • Don’t fall into the trap of “today”. Rating how you feel “today” on a pain scale or even generally does not apply to RA. You might have been totally incapacitated the day before and then be well enough to do handstands in the doctor’s office. When asked those questions, I tend to respond, “Since the last time I saw Dr. Rheum, I have felt XYZ.”

DO NOT take in a stack of Internet printouts and expect your doctor to read them and respond in the course of a 15-minute appointment. Better you should summarize and discuss along the lines of, “I read some interesting research from Big University the other day that said XYZ. Is that something that would be applicable to me?” Of course, if they ask about the study, it’s nice to have a copy with you just in case.:-)

But overall, you have to be honest with your doctor. If something is not working, don’t be afraid to tell them. They can’t fix what they don’t know.

I hope whatever conversations you have today are productive and bring joy to your life. Thanks for checking in.

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

Getting Paid for Psoriatic Arthritis …


One of the good news/bad news things about having a blog is that other people reach out to you to help publicize various things that they think will interest your readers. Often this is a good thing as there is news, education, or offers that can help people with RA and so I’m happy to pass along the information.

I received the following information about a Psoriatic Arthritis survey that pays the participants $100 for their opinions. I’m passing this along because I believe that information is the key to a cure for all kinds of arthritis and the more discussion there is, the more information can be gained.

That being said, I have not had the time to really investigate this opportunity for its validity. If you’re interested, I encourage you to check it out, but please do so carefully.

Do you have Psoriatic Arthritis?

We Need Your Opinions!

The Henne Group is looking for individuals diagnosed with Psoriatic Arthritis in your area to share their experiences with this condition.

If you qualify, you will be asked to participate in a 60-minute in-person interview for which you will be given $100.

This is for research only. We are not selling anything. Participation is confidential.

It will be held in the following cities:

San Francisco on December 1st
Houston: December 3rd
Philadelphia: December 7th
Atlanta: December 9th
If you have any questions or want to see if you are eligible, please call
The Henne Group toll free: 415-348-2933 or Visit the link:

The Henne Group is a market research company located in San Francisco. We are working to understand health issues that people face. Please visit our website at

Thank you for your help,

Summit, aka, also known as being on top


, ,

Full Summit Team

Full Summit Team (Bloggers, Speakers, Joint Decisions, Janssen, Tonic Life Communications) in Sausalito, California

It seems like forever since I posted but I have really, really good excuses (really I do).

Two weeks ago it was once again my great pleasure to attend a Blogger Summit hosted by Joint Decisions ( and sponsored by Janssen Biotech*. If you don’t know about Joint Decisions, it’s a great informational/educational/research resource and I encourage you to get better acquainted with them. The overarching goal of the Summit is to explore both topics that are important to RA patients and channels in which to best deliver the information. I’m going to delve into the topics in future posts, but you can look forward to things like nutrition, conversations with your rheumatologist, and biologics. In addition, if you have ideas on education/information that you think would be helpful, feel free to leave a comment on this blog and I’ll make sure it gets passed along to the Joint Decisions team.

Joint Decisions has previously held a series of live Web Chats on specific topics and one of the things we explored was whether there was a better way to convey this information. Some of the things we discussed were shorter formats (the chats came with a one-hour commitment) and on-demand videos that people could watch when their schedules allowed. I think the information is too important for Twitter, but podcasts were also discussed. I would love to get your feedback on what kind of information you’d like and how you’d like to get it. Perhaps just a (now) old-fashioned email blast with embedded links to further content would work for you. I’d love to hear from you on this.

The bloggers that attended were some of my favorites and the Summits last year and again this year have allowed me to make a personal connection with them, which is amazing. If you don’t already follow these terrific people and fellow RA patients, then please take time to get acquainted. There is a lot of knowledge and some great perspectives you can tap into:

I have lots of updates for you on the personal front re: job, treatment plan, etc. But I will save those for next time. Thanks for checking in.

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

Mark Your Calendars – Creaky Joints Chat #4


Web chat #4 promotional graphic (cover photo)

I’m really thrilled. I have the great privilege of attending an Empowerment Summit along with some of my other favorite bloggers next week. It’s being hosted by Creaky Joints and underwritten by Janssen Biotech and held during the American College of Rheumatologists. One of the most exciting aspects of the Summit is that Creaky Joints will be holding its fourth and final web chat of 2015 on Saturday evening, November 7. The topic is important — Real Talk: Breaking Down Barriers in Patient and Rheumatologist Communications.

Several of the bloggers from the Summit will be involved with the chat along with the truly funny guy, Matt Iseman and (yes, really) people with an MD degree! Here are a few clips (one short, two long) about the web chat: video clip 1, video clip 2, video clip 3.

Please register and please attend. Registration and more information here:


Thanks for checking in.


Can you help RA Warrior?


We all have those special people in our lives that have helped us, especially with our RA needs. For me, one of those people has been RA Warrior ( Not only did her blog provide encouragement, information and inspiration for me, her tireless advocacy for RA patients has made a difference to our community as a whole.

I’ve missed her for about a year. But hey, it happens. People get busy. They do other things. Blogs fall by the wayside.

I wish it were that easy for RA Warrior. A terrible personal situation has turned her life and that of her young son upside down. She has swallowed all embarrassment and has come back to the surface and asked for help.

I’m there for her as much as I can and am asking that if you can find it in your heart (and wallet) to help as well, please do.

Here’s the story as expressed in a letter written by her uncle. There’s a link to a Go Fund Me page and I encourage you to contribute whatever you can:

Dear RA Warrior friends, fans, & family,

Within the context of family history, my niece and her brother have always held a special place in my heart. Last year, I learned that Kelly had fled from her own home with two children, finding safe haven in the home of dear friends. A few weeks later while travelling to visit, appalled at the long and problematic history, I went quietly about verifying the backstory. Within a few days, I knew that she had exercised the only remaining option for ensuring the safety and well-being of her youngest child.

In late summer 2015 (at the worst possible time), her attorney suddenly advised all clients that this law firm was dissolving! Facing live court events in September, with no sense of civility or patience from the opposing attorney, Kelly had to appear before the judge alone, and made a successful argument for sufficient time to engage a new lawyer.

Behind the scenes, while searching full-time for several weeks, through phone interviews, many inquiries, and digging for references, we identified an experienced family law firm. Scraping together nickels, dimes, and a few miracles, Kelly was able to retain an experienced and compassionate attorney. Although, with case-management in shambles, and serious downside risk for her son, while Kelly’s new attorney has already demonstrated considerable expertise, many-many hours of legal work are yet required, and the end is not yet in sight.

To get to the heart of the matter, our family needs your help. Kelly and Roo will continue to need sufficient assistance to keep the law firm engaged, retain expert witnesses, and pursue ongoing investigations. I have undertaken the management of beneficiary fundraising for Kelly and Roo (GoFundMe). We are all continuing in prayer for a just outcome, and release of financial provisions. This is the first time any of us have deployed this internet mechanism known as “crowd-funding”, yet this I know: this is what “family” has always done for one another.


Doctors, Disability and Whining


, , , ,

So last week and this have been filled with doctors. As posted earlier, I have a good bill of health from my neurosurgeon who did my recent back surgery and also had a fairly rewarding conversation with my PCP’s PA about weight loss.

I had a regular follow-up with the orthopedic surgeon who did my hip and knee replacements. The good news is he says both replacements are looking great, which is really positive news considering the hip replacement is now seven years old. Most joint replacements need revisions or replacing after 10-12 years so I’m encouraged. The bad news is that he’s making noises that we might be replacing the right knee sooner rather than later.😦

Today I had my regular rheumatologist’s appointment. With the surgery and trying to get caught up with stuff at work, I really haven’t had time to think about it. I’ve just been taking my Actemra once a week and going on about my business. I told her that taking the Actemra injection was like taking a 5 mg or 10 mg prednisone tablet. It helped for a day or two, but then wore off. She has suggested that we try to get the insurance to approve Actemra infusions where she can modify the dosage to see if we can’t get a better result. She also wants to be a bit more aggressive with pain management so she has prescribed some hydrocodone. At this point, it’s just one tablet at night to help me sleep. I’m really not much of a fan of hydrocodone but I keep having doctors insist on prescribing it for me. I should be grateful. There are a lot of people who really need it that, because of the new regulations, are having trouble obtaining it.

I got my lab results back prior to my rheumy appointment and they, for the most part, looked good. All my labs have always looked great. The one result that was out of line was one of my liver enzymes (again). But it was just slightly high and is probably because I’m still on Lyrica after the surgery to help with some diminishing but continued numbness in my right thigh.

The big news is that I formally gave my notice to my company effective mid-November. I am in the midst of a major project and I don’t want to leave them hanging, so I’m going to wrap that up before I leave. One of the benefits offered at the company is disability insurance (both short-term and long-term), so I have applied for benefits. If awarded, I will receive a large percentage of my current salary up until my full retirement age. I’m not sure what they’ll say about RA being a pre-existing condition, etc. but I guess we’ll see. So in the midst of everything else, I’ve been scrambling trying to get my doctors to fill out the (really stupid) forms and get them in so we can get a determination. I never really actually thought I’d be retiring early due to health reasons — I more kept the insurance so I’d have income during surgery recovery if I needed it. But the point is I’ve been paying the premiums all this time so there’s no reason not to apply for the benefits. All they can say is no and I already have that.

The good news is that I discussed this decision with all my doctors that I’ve seen recently and they fully support my decision to step out of the corporate world. That’s a bit sobering. It’s almost like I’m seeing myself through their eyes for the first time. Not one of them said anything like, “Are you sure you’re ready for that?” In fact one of them said they have been amazed that I’ve worked for as long as I have.

Of course this will play havoc with my insurance. I’ll be covered by company insurance in November. Then in December, I’ll still be covered, but I’ll be paying for it through COBRA. Then in January, I’ll still be on COBRA, but they’re switching insurance companies. Am I nervous making three major changes in my insurance coverage in three months? You bet.

In other news, Dallas is set for a major rain event. We had enough rain in May that a significant part of our area finally came out of the five-year drought we’ve been enduring. But it’s barely rained since. In fact, October, which is one of our wettest months, has not logged more than a trace of rain all month. With highs in the 80’s and 90’s, it might as well be early summer. But all this sunny weather has lulled me into a false sense of security. Rain and stormy weather on the other hand, send my joints into a tail spin. So with four days and 3″ to 6″ of rain in the forecast, I may be glad that I’ve got that new prescription for pain medication.

Overall none of this is really bad news and some of it is actually quite good. I think I’m just tired with dealing with it all. I’m tired of not feeling well. I can’t remember the last time I actually felt good. I’m tired of the stupid back brace and I’ve got two more months to go on my three-month sentence. I’m tired of doctors and needles and insurance claims. The thing that keeps me going at the moment that this time next month, much of this will behind me. I’ll be officially “retired”, the determination on the infused Actemra will be in, and the determination of the disability will be in. My biggest problem should be finding something new to whine about.

Thanks so much for “listening” to me whine and thanks for checking in.

Interesting discussion(s) on pain …


, ,

I recently ran across, a self-professed blog for “Health Professionals Supporting Chronic Pain Self Management.” While intended for health professionals, I’ve found the blog to provide insightful and compassionate discussions of pain management and the effects of pain.

I invite you to explore the entire site, but I’ve provided links to two of the posts that really resonated with me. The first dealing with the impact of pain acceptance and the second about the “them-and-us” attitudes that some health care professionals have concerning their patients dealing with pain. The second asks the highly charged question of whether or not patients (who actually experience the pain) shouldn’t have a voice in the discussion. I know, what a concept, huh?

I hope that you find the site as thought-provoking as I have. Thanks for checking in.

About weight loss …


, ,

I mentioned in my previous post that one of my primary goals in improving my health is getting back down to a healthy weight. I have a way to go. I also have high cholesterol, high blood pressure, high triglycerides and the occasional borderline high glucose. In addition, the extra weight is murder on my joints (as if RA wasn’t bad body-weight-scaleenough).

I sound like a weight-loss commercial when I say I’ve tried low-carb, no-carb, commercial programs, Weight Watchers (which really works), and just trying to watch what I eat.

I looked at bariatric surgery. I have friends and family who have successfully lost weight with lap-band, but I am so sick of surgery that I can’t hardly to stand to think of it. Plus there are long periods of follow-ups with these surgeries. Then I ran across the gastric balloon which is non-invasive (it’s a balloon they place in your stomach). It remains in place for six months, during which time the average weight loss is 20-30 lbs. It costs about $6K and is not covered by insurance. Then I thought, if someone would pay me $1K/month to lose five pounds a month for six months, could I do it? So I’ve decided to keep the money in my own bank account and just be very serious about losing the weight.

But how?

When I got a new PCP about 18 months ago, I also got a relationship with his PA, whom I adore. I would have to do several posts about why that is, but when considering such a major change in my life, it just felt right talking to her about it, and I was right.

She said there are four elements when it comes to weight loss:

  • Diet. Diet is critical. Not only lowering your calorie intake but making sure you get enough calories so that your body doesn’t go into starvation mode. If that happens, your body start hording calories, which also causes stress which makes you put out stress hormones (such as cortisol) that act a lot like prednisone. The key is trying to get good nutrition within a reasonable calorie allowance. I had originally thought 1200 calories, but she had me move my calorie target up to 1300 to make sure I was getting the nutrition I need. To help, I track what I eat with My Fitness Pal ( The basic plan is free and you can track online or on your computer. It has thousands of foods including packaged foods and restaurant items as well as letting you input your own recipes.
  • Exercise. Okay. This is really, really hard for me but I am hoping that once I get healed enough from my surgery and I’m no longer working full-time that I can get back to the gym/pool. This is my goal. I will soon have no more excuses.
  • Mental. This is critical. You have to be motivated (I am). Beyond that, you have to understand the mental and emotional triggers that cause weight gain. I eat when I’m stressed and my job causes a great deal of stress, so by retiring, I’m removing a huge contributor to my weight gain. Not everyone can quit their job, but it’s important that you learn coping methods for stress. As noted above, stress hormones act just like prednisone in many ways (and my waistline proves it).
  • Medical. I take about 10 oral prescription medicines and a handful of supplements and vitamins. Add to that the OTC pain relievers, allergy meds, occasional rounds of prednisone, etc. and you can understand why taking even one more pill was more than I wanted to consider. But I knew I probably need some help to jump-start this plan while I wind down my work and help me get used to eating less. The PA recommended a drug called Saxenda. It’s marketed under another name to help diabetics get their A1C results in line. It was noted that diabetics were also losing weight right and left while on the drug, so FDA agreed to let it be marketed for weight loss under the Saxenda label. It’s a daily injection, but after years of taking injections for RA, that didn’t faze me. In fact, the needle is so small that I don’t even feel it going in. The down side is that it’s not covered by insurance and it’s very expensive. The PA gave me a starter sample that is good for a couple of weeks and I’m about to find out how expensive as I’m picking up the first prescription today. The PA said that she could prescribe it under the other label so insurance would cover it, but she’d have to give me an official diagnosis of pre-diabetes, which I really don’t want. She also said she’d be glad to provide samples if she has them (which she doesn’t always). I’m very impressed so far. I’m not hungry — at all. I’ve even lost my stress “munchies”. The problem I have is getting enough calories in since I really don’t want food.

So that’s where I am. I have a lot of work to do and I know it will take me several months to attain any significant weight loss and to get in better shape. But I have the motivation, a plan, and medical support (along with that of my husband), so I think I’m off to a good start.

If you have RA and are carrying around the extra weight, I urge you to start making changes, however small, to reverse that situation. Nothing will pay more dividends not only for RA, but your overall health.

Thanks for checking in.

Seminal Moments

We’ve all had those seminal moments – instances where everything after that point changes. Maybe it was that moment when you knew you wanted to get married – or divorced. The birth of a child. The death of a loved one. Graduating from college with the overwhelming question of, “What next?”.

I think that for many people, being diagnosed with rheumatoid disease certainly qualifies for one of those life-altering events.

Many of those moments are the expected culmination of a series events (such as the birth of a child). Others, like the one I just had, are not.

I’m of the age where you start playing what-if games with retirement planning. A few years ago I had decided that I would retire at the end of 2013. As they say, if you want to make God laugh, make a plan. Thanks to the severe realities of having to provide for both health insurance and medical costs, here I am still working, full time.

But not for long. …

Read the rest of this post at

TLIF – Three Weeks Later


, , ,

Yesterday I had my three-week check-up after my TLIF surgery on my L3-L4 vertebrae. I’m glad to say that recovery has been pretty uneventful with the exception that I’ve developed an allergy to dermabond — that great super glue that doctors now use instead of sutures or staples. I was having a lot of incision pain until the dermabond finally wore off and it suddenly stopped. I still had a rash around the back surgery croppedincision, but a bit of cortisone cream quickly cleared that up.

This is a pretty bad photograph of the Xray of my spine taken yesterday. It shows the previous TLIF surgery on L2-L3 and the more recent procedure. There is the obvious hardware stabilizing the spine along with the sort-of visible interbody spacers (those up and down specs between the vertebrae). What’s not really clear here is the mass of bone packed in to build the fusion to further stabilize the spine.

As with anything else, there is good news and bad news. The good news is that the surgery fixed the problem. The further good news is that I got a good bill of health from my surgeon and was cleared to start driving. Bad news? I have to wear the friggin’ back brace for three months. I also can’t start working out in the pool for another three weeks as a precautionary measure to help guard against incision infection. The really bad news is that each time you do a fusion it put more stress on the vertebrae below it, so I’ll probably have to go through this again in another few years. It’s only been two years since the last time I had this done. RA seems to accelerate these schedules.

In other news, today is full of doctors. I need to get my labs done for my rheumatologist appointment next week, I have Xrays and a follow-up appointment with my orthopedic surgeon who replaced my hip and knee, and an appointment with my PCP to discuss the effects of a new blood pressure medication and talk about losing some of the weight I’ve put on (thank you, prednisone!). I’m sure I’ll have more to report after all that settles down.

Again, thanks to everyone on their support and good wishes during my recovery. It has meant a lot.

Thanks for checking in.


Get every new post delivered to your Inbox.

Join 236 other followers