Aaargghh! (continued)

Maybe it’s just me or maybe it’s just me on prednisone, but it seems like my dealings with the medical profession are increasingly frustrating lately. This is unfortunate because I seem to be having a lot of medical interactions these days.

(The rest of this post is just going to be me venting, so if you want to skip it, please change the channel now. :-) )

I reported earlier that I had a GI situation for which I couldn’t get into see the gastroenterologist until the first week of July. Okay. That wasn’t what I wanted, but I was dealing with it. Until Sunday when said situation sent me to the emergency room.

After exams, blood work, consultations and discussions, the ER guy said I need a surgical procedure to correct the situation. He was going to consult with my GI guy and come back with a plan.

After speaking to my GI guy, the ER doc came back and said that I had basically two options. They could keep me in the hospital and they could move forward with the procedure, assigning whichever of my GI guy’s partners was available. Or, according to the ER guy, the GI guy said that he would somehow work me into his schedule in the next few days before he left town.

It’s not really a life-threatening situation and I don’t like hanging around hospitals, so I opted to go home and schedule the procedure with the doctor that I know.

So it’s now Monday. I spent a great deal of time today coordinating with GI guy’s staff (who took me at my word about what GI guy said to the ER guy about doing the procedure). I spent even more time getting things coordinated with the surgical center. My husband rearranged his schedule this week so he could be with me and that included rescheduling a rather critical medical procedure of his own. I reorganized meetings, moved things to conference calls, cancelled physical therapy appointments, and basically cleared the decks for the second half of the week so I could have the procedure and have recovery time.

Then GI doctor’s office calls me back. They said they finally talked to the doctor who saw that I had been scheduled for the procedure Wednesday morning. He said what he told the ER guy was that he would work me in to be seen IN THE OFFICE for an exam — not that he would schedule the procedure (for which the ER doc was going to admit me and do that day).

I understand him wanting to see me for himself before committing to a surgical procedure. But it may be another week before he can schedule me for the procedure (assuming that he deems it necessary). If I had stayed at the hospital, I could have already had it done and be home (and saved $200 emergency room copay, which they waive if they actually admit you).

I’m sure it was a simple miscommunication between what the GI guy said and the ER doctor heard, but it certainly has caused me (and my husband) an amazing amount of frustration today.

ARRRGHHH! (This is steam coming out of my ears …)

Sorry to keep venting lately, but I really appreciate you listening. Thanks for checking in.

Fast, Faster, Fasting


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I’m pretty good at managing one medical condition, but I have to admit that keeping up with multiple issues makes me crazy with all the appointments and medications and tests, oh my! This is especially true because lately I’ve been extra busy at work and honestly finding time for all of this stuff has been pretty stressful.

I am currently doing physical therapy twice a week for my left knee and that will go through the end of June.

Then I had the liver enzyme situation which kicked me off some of my meds, including one of my RA meds. On top of this, when I saw my rheumatologist, she agreed that we need to switch to Actemra, but she indicated that since I had just gotten my labs done right before I saw her, that I wouldn’t have to do any more blood work. But she did say she wanted to get a baseline liver sonogram before starting the Actemra because of the liver situation.

I saw my rheumatologist on a Wednesday. When my rheumatologist’s nurse called me the following Monday, I just assumed it was to let me know that the insurance hurdles had been cleared in record time. Instead it was to tell me that apparently the doctor had changed her mind and decided I did need to do a full range of blood work. They wouldn’t even submit Actemra for pre-approval until the lab results came back, which basically delayed getting started on the new drug for yet another week. (I haven’t been on anything but 10 mg of prednisone for more than a month now.)

I also had the follow-up with my PCP after the ER visit for chest pains. He suspected that it might be GI/esophageal related and ordered an upper GI.

The blood work had to be fasting. The liver sonogram had to be fasting, but I could have water. The upper GI not only had to be fasting, I couldn’t even have water for at least eight hours prior to the test. In addition to RA, I also have Sjogren’s and without my medication, I get dry as the Sahara anyway, but add to that the fact that I couldn’t have anything to drink, I was pretty miserable.

But I got everything done on Thursday as the imaging office was in the same medical complex as the lab. I got there earlier enough to go get blood drawn first. Of course I was so dehydrated that they had to stick me three times and use a pediatric butterfly before they finally were able to draw the samples they needed. Then it was off to have my liver sonogram done (which was no big deal, just messy from the gel they use) and the upper GI.

The upper GI was at least interesting because I could watch what was going on and the radiologist told me what was he was observing and gave me the results verbally when we were done.

So by Friday, I had all the results:

  • My labs came back pretty normal — at least to the point that my rheumatologist was willing to prescribe Actemra. One of my liver enzymes was still slightly elevated, but so greatly improved that we were able to move forward. However, I was somewhat aghast when I found out that the nurse (who I already was convinced is pretty incompetent) had never heard of the drug and was asking me what dosage she should order.
  • The liver sonogram result was “fatty liver.” This is not great, but it’s not terrible either. It just underscores that I need to take a more serious approach to my diet and exercise.
  • The upper GI came back completely normal with the exception of a tiny bit of reflux. The radiologist said I didn’t score 100% but I got an A-. There were no ulcers, hiatal hernias, obstructions, or cancer. This is all great news but now we still don’t know what caused the chest pains that sent me to the ER. I see another follow-up with my PCP in my future.

On top of this I seem to have developed an issue where I need to see my gastroenterologist but I can’t get an appointment for another month and I’m having war with my insurance company over a $70 charge for mail-order drugs that they show unpaid but my credit card shows that it clearly was.

AND my husband is having a medical procedure of his own this week which requires a day trip to the hospital and rest for a day or two afterward, so in addition to my own issues, I am helping support my husband’s situation.

I don’t know. It seems like my entire life is wrapped up in dealing with medical issues these day. I know that all this will be resolved in the near future, but at the moment it’s a bit difficult to manage it all and still keep a job and a household intact.

I hope whatever you’re juggling these days are happy things and not flaming chainsaws. Thanks for checking in.



Exciting News!


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As you may know, I’m pleased to be associated with Creaky Joints and their Joint Decisions initiatives that provide so much valuable information and resources for people with RA and similar chronic and inflammatory joint diseases (see

On Wednesday, June 3, Megan Park (well-known for her role in “The Secret Life of the American Teenager”) disclosed that she lives with RA and has partnered with Joint Decisions to help raise awareness of RA and further Joint Decisions’ goals to empower and educate those with the disease. She will be featured on Joint Decisions’ first web chat of the new season, “Unlocking Energy: Understanding the Important Role of Movement and Nutrition in Managing your RA” on June 15. (The full schedule and a registration link appears below.)

Joint Decisions has a crack website team that created a “content capsule” that would have allowed me to include some really cool information from their site. What they didn’t count on was that, even with a tutorial, I apparently don’t have the technical ability to embed that content in my blog, so please visit to see all the exciting things they have going on and avail yourself of all the great resources and information there.

This season’s Joint Decisions web chat line up:

Thanks for checking in.

It’s not always RA


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I don’t know why but I’m always surprised when something is wrong with me that’s NOT associated with RA. I mean when my liver enzymes went crosswise, the first thing that happened is that my rheumatologist took me off one of my RA meds.

But we’re actually people first then people with RA second, so sometimes stuff happens that also  happens to “normal” people.

I was minding my own business, driving to work one morning last week when I started having chest pains. First it just felt like I had tried to swallow something and it got stuck halfway down (right behind where my heart is). Then the pain blossomed throughout my chest and up my neck under my jaw. It would lessen, then it would come back stronger.

I was driving east toward a major highway. When I hit the highway I had to make the decision of whether to turn north and go to the office or go south to the emergency room. I switched lanes about four times. The pain would come back and I’d move over to the lane to turn south. Then it would lessen and I’d think I was stupid and get back in the lane that would take me north. Finally I got to the intersection and had to make a decision. I decided that if my husband were having these symptoms I would tell him to go to the ER, so I took my own advice and turned south toward the hospital.

I called my husband who stayed on the phone with me as he headed toward the hospital to meet me. (We have those neat Bluetooth, hands-free phone things that let you talk on the phone without taking your hands off the wheel.) My husband suggested that I pull over and call 911, but I pointed out that by the time the ambulance could reach me that I could already be at the hospital. I did finally reach a point on the highway where I could pull off to the access road where I could pull into a parking lot if I felt like I couldn’t drive any more.

I got checked into the ER immediately and whisked back to a treatment room where a flurry of activity took place almost all at once: an IV started and blood drawn, hookups for an EKG and heart monitor, and a chest X-Ray. My blood pressure and heart rate were all over the map. The doctor came in and checked me, then the nurse came in with drugs. They administered morphine as a vasodilator which reduced my blood pressure, Zofram for nausea, then, as a precautionary measure, nitroglycerine and an aspirin.

Four hours later they finally released me. Everything came back perfectly normal.

I know, that’s good news, right? But it’s hard to go through all of that and be “normal”.

So I had a follow-up appointment with my PCP yesterday. He suspects a specific type of esophagus spasm. One of the common causes/triggers of this is a hiatal hernia, so I get to go in next week for an upper GI. (Can you say barium milkshake?) I was already scheduled for a liver ultrasound because my liver enzymes (while better) are still not where they should be and my rheumy wants to get a baseline before we start Actemra. At least I was able to schedule the two appointments back-to-back so I only have to go to the imaging center one time (and only fast once!).

So it wasn’t RA and (thankfully) it wasn’t a heart attack. But honestly, I really don’t want any new health issues in my life at the moment. Sigh. Fingers crossed that the liver test comes back good and that they find something really, really simple with the upper GI.

I hope that whatever excitement you have in your life today doesn’t involve the emergency room. Thanks for checking in.

Next up, Actemra


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Well, I’m sort of still on a drug strike. Temporarily.

I had my follow-up with my rheumatologist yesterday and we revisited my treatment plan. She actually wasn’t cross with me for staying off Kineret once I returned home from Europe and got over the crud.

As noted before, I’ve been through all the biologics except for Rituxan and Actemra and, after some discussion, she is prescribing Actemra. This is an Interleukin-6 inhibitor which I haven’t tried before so I am hopeful that this may be the “magic” solution that will not only be effective, it might actually last. Additionally, the drug is administered either via injection or infusion and she allowed me to choose my preference of an injection rather than infusion. Kineret is a daily injection, so it will be nice to go back to a once-a-week schedule rather than having to do daily pokes. (Four injections a month vs. 30 injections. I mean really, how great is that?)

Of course, now I have to struggle through all the insurance pre-approval circus (yet again), so who knows when I might actually start on the drug. The fact that I’m still on 10 mg of prednisone so am not feeling horrible makes me a bit more patient about it.

Hopefully everything will be approved quickly and the self-imposed drug strike will end on a happy note.

I hope whatever is new in your life today brings a smile with it. Thanks for checking in.

Being Invisible (Reprise)


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Occasionally I like to go back and reread some of my older posts. This is one of my favorites.

As I cruise the various blogs about RA, I see a lot of discussion about “visible signs” and “use of assistive devices” along with the omnipresent “invisible disease” conversations. On one hand we tend to rail against those who don’t understand that even though we may not look sick, we have a chronic, debilitating, incurable condition.

On the other hand, however, we tend to view those visible signs of the disease — crooked fingers, using a cane — as a sign of defeat, a sign of disability.  We really don’t want our disease to become visible.

I think part of this is that as long we, ourselves, don’t see these visible signs, it’s easier to ignore the fact that we have the disease. Let’s face it, particularly in the US, the image is of youth, energy, and health. That, more  so than a house with 2.5 kids and a dog, has become the American dream. Anything less makes us a second class citizen and most people with a disability in this country will tell you that’s exactly how they’re treated.  And if you want to talk about being invisible, well, just have a conversation with someone who is physically challenged.

When I had my hip replaced in August 2008, I had to use a walker and then a cane for a period of time. I can tell you that I was, indeed, treated very differently when I went out in public with these devices. However, for me it wasn’t a problem because, guess what, I was RECOVERING from surgery. I wasn’t disabled. I was merely temporarily inconvenienced and I would get better and put away the walker and cane — or perhaps donate them to someone less fortunate who needed them. Not me. This was TEMPORARY.  (I must admit to using the “helpless me” on more than one occasion to my advantage during this period. And in Dallas, a handicapped parking sticker is worth its weight in gold. Enough said about that.)

The problem with RA is that you don’t recover. It’s not temporary. It doesn’t go away.

Assistive devices, as Rheumatoid Arthritis Guy ( tells us, are not limitations, but empowering tools that let us more easily accomplish what we need to do. They help us maintain our independence and our dignity. The difference between my hip surgery and RA, is that once I start using a cane or other device, there is no road back. The invisible illness becomes a visible disability.

This is a transition that is as emotionally charged and personally defining as going through adolescence, or going through a divorce or death of a spouse. Suddenly you’re not who you were yesterday, and you’re not going to be that person ever again. You’ve added a new adjective to the way people describe you. The “D” word.

I’m not there yet. Even with medication, however, I expect to be there one day. Hopefully years from now, but one day. I’ve had some practice since I’ve used assistive devices in the past, so I’ve lost my fear of using the handrail, picking up the cane. But there are many more who haven’t had that advantage.

I would love to hear from others who have made that transition. Can the transition be a metamorphosis into a butterfly — that moving more slowly gives us more of life?

Thanks for checking in.

On strike!


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I consider myself a good patient. I bet if you took a survey of my doctors and asked them if I am a good patient, they would also check that box. A significant credo in my life is that a treatment plan won’t work if you don’t follow it. After surgery I have rested, iced, exercised, strengthened and physical therapied myself back into shape. For RA, I have swallowed pills, exercised, X-rayed, and watched my diet. I have also injected once a month, once every other week, once a week, and once a day as well as suffered through hours-long infusions that did nothing more than left me with a headache and nausea.

But I am also an active participant in my health care and, at the moment, I am

- Attribution:


actively NOT taking my biologic.

It didn’t start out that way. At the end of March, my rheumatologist took me off leflunomide (Arava) because my liver enzymes were elevated. When I saw her in mid-April before the trip, she started me on 10 mg of prednisone to keep me going through our vacation. I was hopeful that she would also switch me off the Kineret, which is a daily injection because (1) I really didn’t think it was working anyway and (2) I really didn’t want to babysit 14 pre-filled syringes all over Europe. But she was reluctant to take me off both leflunomide and my biologic without a different treatment and she didn’t want to start a new medication right before I left the country for two weeks. So off to Europe I went, still on the Kineret.

Things went pretty well until one day in London there was a mishap with the mini-bar fridge where I had stored my Kineret. The remaining syringes spent at least 12 hours being warm which is not what you want to have happen to a biologic that’s supposed to be kept refrigerated. That event coincided with the fact that I was getting sick so I made the decision just to forego any more Kineret until after I got home. Either it wouldn’t work because it had gotten warm or it would work and I would potentially get even sicker because my immune system would be further compromised.

So since that time (a little more than two weeks ago), I’ve taken nothing for my RA except for 10 mg of prednisone a day. I did refill my Kineret prescription when I got home. And I’m pretty much over the crud I had. I just can’t seem to get motivated to restart the Kineret. I don’t think it’s working for me and frankly, I hate the daily injections. The prednisone seems to be enough to keep the inflammation generally down and the flares at bay without being strong enough to interfere with sleep or produce any of the other noticeable side effects.

So here I am, Ms. Poster Child for patient compliance being on strike against taking my biologic. Not exactly an earth-moving revolution, but for me, it’s a pretty significant step.

I don’t know that prednisone is a long-term solution. While I love all the good things it does for me, it has a very dark side. But I’m down to two biologics that I haven’t tried yet, Rituxan and Acterma. Given the choice, I’m not sure I wouldn’t just rather ride the prednisone wave a bit longer.

I see my rheumatologist in about 10 days. My plan is to stay off the Kineret until I see her again. Then we’ll see what comes next and whether I can regain my “good patient” status.

I hope whatever revolt you happen to be leading at the time is a huge success. Thanks for checking in.

Thank you, Healthline!

At some point while I was gallivanting around the European countryside, Healthline paid me the immense compliment of once again naming Carla’s Corner as one of the rheumatoid-arthritis-bestBest Rheumatoid Arthritis blogs of 2015.

I happen to be in excellent company as many of my favorite bloggers are also on the list. I hope you’ve had the opportunity to visit the site and either renew your acquaintance with some great RA advocates or meet some new ones. (See the full list here.)

There and back again – travels with RA


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I’m not even sure where to start. Almost immediately after my return from the HealtheVoices conference, I left for two weeks of vacation in Florence and London. I guess there’s a good reason I feel like I haven’t slept in my own bed for a while.

First home base was Florence. This is the view from the Ponte Vecchio.

First home base was Florence. This is the view from the Ponte Vecchio.

Let me first say that it was an amazing trip. My husband and I had a wonderful time and thoroughly enjoyed ourselves. However, when you have a chronic disease, there are always two parts to the trip. There’s the trip itself, then there’s dealing with the disease while you’re traveling.

The most challenging part of the entire trip was getting from Dallas to Florence. We took a flight from Dallas to Houston where we had a four-hour layover before picking up a British Airways flight to London Heathrow. We then had to clear customs and immigration and make it across London in rush hour traffic using the London subway system (and dragging our baggage) to London City Airport where we took a second BA flight to Florence. By the time we made it to the hotel in Florence, we had been traveling 28 hours. We were completely exhausted and jet lagged (there is a seven-hour time difference between Dallas and Florence).

We had been to Florence before when I was sent on business and my husband joined me for a couple of days at the end of the trip. This time we really got to explore the city and enjoy it at a reasonable (slow) pace. Our hotel was located just outside the city center — a few steps from a tram and bus stop that took us into the city within a matter of minutes.

The Basilica of San Lorenzo is just a few steps from the train station.

The Basilica of San Lorenzo is just a few steps from the train station.

Of course, in addition to all the sites, Tuscany is famous for its wonderful food (of which we took more than ample advantage). Since I was there last, Florence’s Central Market had added a floor of restaurants above its main market floor where you could get incredibly fresh food cooked to order.

Bistecca fiorentina, or T-bone steak, is a Tuscan favorite. At this restaurant in Florence's Central Market, they cut the meat immediately before cooking it for you.

Bistecca fiorentina, or T-bone steak, is a Tuscan favorite. At this restaurant in Florence’s Central Market, they cut the meat immediately before cooking it for you.

Sweet shops abound in Italy.

Sweet shops abound in Italy.

We used Florence as a home base to visit both Venice and Lucca. Venice is, of course, the city of the fabled canals. Lucca is a smaller town close by that has a wall surrounding the city. You can actually go up on the wall and walk around the city or bicycle.

St. Mark's Square in Venice.

St. Mark’s Square in Venice.


The interesting ladies’ “toilet” at the Lucca train station offered some challenges, particularly with hip and knee replacements.

We had also planned to go to Sienna, but it came to the point where my husband and I were both just completely worn down by the travel, so we swapped the side trip for a day of rest where we did just that — slept in late and took it easy the rest of the day, venturing out only for something to eat.


I need a walk-in shower because it’s difficult for me to get in and out of tubs. This is the “accessible” shower in our Florence hotel. No shower curtain, so the place was soaked when I got done.

After a week in Florence, it was time to head to London for the second part of our trip. London is one of our favorite cities and we’ve been fortunate enough to visit at least once a year for about 12 years. I’m not sure that RA will let me make many more trips. But it almost felt like coming home.

I dislike crowds and really don't like heights, so of course we took a turn on the London Eye.

I dislike crowds and really don’t like heights, so of course we took a turn on the London Eye.

We tried a different hotel this time, the Marriott AC St. Ermin’s, which was wonderful. Not only is it a great hotel with a superlative staff, it was conveniently located close to both the Underground and major bus routes. We were also only a few blocks from Buckingham Palace.

St. Ermin's has more than 200,000 bees at their

St. Ermin’s has more than 200,000 bees at their “Bee Hotel” and they use the honey throughout the hotel.

We visited most of our favorite haunts and restaurants in London and then took our life in our hands. We actually rented a car and drove north to Duxford, the location of the Imperial War Museum’s aircraft museum. Other than the terrifying experience of driving on the “wrong” side of the road, it was a perfectly lovely trip.

I never found out what was growing in these beautiful yellow fields we saw on our drive to Duxford.

I never found out what was growing in these beautiful yellow fields we saw on our drive to Duxford.

We saw the very rare site of an SR-71

We saw the very rare sight of an SR-71 “Blackbird” stealth bomber being towed to a hanger while we were at the IWM at Duxford, north of London.

We were fortunate to take in the London Film Museum’s collection of Bond cars. In addition to the cars, they had supporting information such as story boards and early drawings of the cars. For Bond fans like my husband and I, it was great.

Bond in Motion - the most complete collection of Bond cars in the world.

Bond in Motion – the most complete collection of Bond cars in the world.

Kate and William’s new daughter, Charlotte Elizabeth Diana, the Princess of Cambridge waited until we were in town to make her appearance. Even the taxi cabs celebrated the new princess. (See sign on cab below that proclaims “It’s a GIRL!”.)

Even the taxis heralded the arrival of a new royal princess.

Even the taxis heralded the arrival of a new royal princess.

On our final night in London, we took in the theatrical production of “American Buffalo” with John Goodman and Damian Lewis. It was probably one of the best plays we’ve seen.

American Buffalo. Image courtesy of Sheffield Theater.

American Buffalo. Image courtesy of Sheffield Theater.

I often say I can tell how good of a time I had by how beat up I come back from a vacation. I must tell you that I am black and blue in most places plus have a pretty good case of the crud. I couldn’t have done the trip had I not had steroid injections in both my knee and my shoulder and been on 10 mg of prednisone during the entire time. Even then it was a struggle.

I am off one of my RA meds due to elevated liver enzymes (something that I now need to address since I’m home). My biologic, Kineret, is a daily injection that has to be refrigerated, which means that I had to take 14 pre-filled syringes with me to Europe and keep them cold for two weeks. Not an easy feat. I’m not sure the Kineret is really working so the prednisone was the only thing standing between me and a total flare during the trip.

Kineret comes in a box holding a week’s worth of injections (seven syringes), so I packed two boxes in an insulated bag with the ice packs that the specialty pharmacy uses to ship them in. I really didn’t have a problem getting the medication through security at DFW, they just sent it on through. We stayed inside security at the Houston airport, so I didn’t have to do a second screening. Halfway across the Atlantic, I got worried that the ice packs were thawing, so I asked the flight crew to fill some zip-lock baggies I’d brought with ice. That helped, but the bags leaked and soaked everything in my carry-on tote, including some of our travel documents. It was when I got to London City Airport to catch the flight to Florence that I ran into the first issues. They wanted to look at everything, they needed to see the note from my doctor prescribing the drug, they needed to test the ice packs to make sure they were ice packs and not explosives. All this was fine, but it added another 15 minutes getting through security (which already takes a long time since I set off the metal detectors).

Once I got to the hotel in Florence, I was able to store the drug in the minibar and the night before we left, I got the staff to refreeze my ice packs for me to use for the trip to London. Everything went well from Florence to London and then at the hotel until about halfway through the trip. Then there was a mishap with the minibar and my syringes became unrefrigerated. At that point, I had decided I should quit taking it anyway because I was getting sick. (And we all know you’re not supposed to take immuno-suppressive biologics if you have an infection.) The itchy, scratchy throat I’d developed in Florence (and thought was allergy related) turned into a real sore throat with a very active, very productive cough. This eventually spread to my nose and sinuses and down to my chest, finally enveloping my left eye in a bright-red case of conjunctivitis (pink eye) the night before we left London. I was visibly ill and I was actually very concerned that they might not let me on the plane and/or let me back in the country. Since the entire Ebola scare, the immigration folks at DFW are pretty gun shy when it comes to sick passengers.

But it all worked out. We had a direct flight from London Heathrow to DFW which made the trip about as easy as it could be. I have antibiotics now that I’m home that seem to be helping the nose/throat/chest infection and some antibiotic eye drops that are helping the eye. Now comes all the unpacking, laundry and getting caught up with real life.

It was a wonderful trip, but I’m really, really glad to be home again.

Thanks for checking in.

Hear Our Voices!


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Sometimes I (erroneously) state that RA has never brought blessings into my life. The fact is the connections I have made because of my illness through the online community and, increasingly, social media, are some of the blessings I cherish most. This was underscored during the past weekend’s HealtheVoices conference sponsored

View of the Manhattan skyline from the conference hotel.

View of the Manhattan skyline from the conference hotel.

by Janssen Biotech which brought together online advocates not only from the RA community but a multitude of other chronic diseases including diabetes, cancer, Hepatitis C, and other debilitating conditions.

There were two things that struck me profoundly over the course of the conference. (Trust me, as you get older, there are fewer and fewer profound moments, so this was pretty amazing.)

The first is the commonality across all the various forms of chronic illness. We don’t necessarily suffer the same symptoms, but we all face similar challenges: communicating with our doctors, fighting for treatments, battling insurance companies, making difficult life decisions affecting family and work, and many, many others about which healthy people have no inkling. While it’s easy to feel isolated when you have RA or other chronic conditions, the reality is there is an amazing range of people who are just like us. Thanks to “e-voices”, the voices in the wilderness making connections via the Internet, we are able to share experiences, offer and receive support, and build a community of out of individuals who would otherwise, indeed, be isolated. Instead of differences, we are finding common ground and common causes.

The second thing that so affected me was the realization of how powerful and important the patient voice has become in healthcare. Again, thanks to the power of the Internet, patients have a platform and a voice and are now being heard like never before. Whether its been through a natural evolution or whether we’ve shoved our way to a place at the table, I don’t think that genie is every going back into the bottle. If anything, the patient voice — through its online and social media advocates — will continue to resound through the halls of government, through the classrooms at teaching hospitals, across the ivory towers of insurance companies, all the way down through the individual examination rooms where we meet with our healthcare providers. The patient voice is not only powerful, it is empowering, providing each of us with the knowledge and confidence to make a difference in not only our personal healthcare, but how healthcare is managed and provided going forward.

It is not just the RA voice, it is the voices of RA combined with Hepatitis C combined with Cancer, combined with Diabetes, combined with HIV, combined with the great mosaic of other acute and chronic conditions. This combination of voices is creating and will continue to create a cacophony that will be heard.

We are, after all, the consumers of healthcare and there is no greater force in a capitalistic society than that of the consumer. We simply have to understand this power and use it effectively.

There are no words to thank Janssen enough for this experience and for their continued mission to meet the needs of patients — not only by providing leading pharmaceuticals that cure or alleviate chronic diseases — but also supporting the less obvious needs by actually listening to the patients who benefit from their research.

Note that in the pursuit of full disclosure, Janssen paid for my travel expenses for the summit. However, all thoughts and opinions expressed here are my own.


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