Please check out this great post from J.G. Chayko discussing RA/Arthritis apps, including the terrific Creaky Joints app:
We’ve all had those moments. Those transcendental moments between sleeping and waking in the morning. Those moments where we somehow slip seamlessly from the vivid reality of our dreams to the dozing slumber of our bed.
Lying there, still somnolent, I used to try to orient myself to the day. Was it a weekend? Could I roll back into the arms of slumber and ignore the clock? Was it a weekday with a calendar filled with deadlines where I had to leap up and fuel my adrenaline with caffeine? Was my husband still sleeping beside me or had he already gotten up or, perhaps, was traveling and hadn’t been in bed at all?
I no longer have those somewhat delicious waking thoughts in the morning. Thanks to RA, my first thought in the morning is now, “Where does it hurt?”. I’ve traveled well beyond the boundary of, “Does it hurt?” …
Read the rest of the post on RheumatoidArthritis.net: https://rheumatoidarthritis.net/living/where-does-it-hurt/
Many of you that follow my blog know that I’m really delighted to work with the people at Creaky Joints (www.creakyjoints.com). One of my favorite things they do are the Joint Decisions web chats. The next one, “Shaping Your Story: Managing the Mental and Emotional Challenges of Life with RA,” is next Wednesday, August 5 at 6:00 pm Central. What’s really exciting to me is that this chat will feature Eduardo Flores, aka Rheumatoid Arthritis Guy (www.rheumatoidarthritisguy.com). RA Guy was one of the first blogs I found after my diagnosis and his insight, honesty, and wisdom helped me as he has helped so many others. I encourage you to “tune in” for this chat that will focus on the importance of emotional well-being for people living with RA. In addition to RA Guy, the chat will feature health psychologist Dr. Laurie Ferguson of Creaky Joints and rheumatologist Dr. Theresa Ford.
Here’s the registration link: http://po.st/8uwCyU
There’s great news from RheumatoidArthritis.net. Please see the following announcement concerning TrialLink. To see the original announcement (with all the working links), visit RheumatoidArthritis.net here: http://rheumatoidarthritis.net/clinical/you-can-make-a-difference-with-rheumatoidarthritis-net-triallink/
We are excited to let you know that there is a new opportunity for you to make a difference in rheumatoid arthritis (RA) research!
While most of us know that new medicines to treat RA are being examined in clinical trials, few of us actually have the tools to access those trials. We want you to have a place to share your voice and really make a difference in the future of RA treatment.
Starting this month, we will be offering the chance for RheumatoidArthritis.net community members to learn more about clinical trials performed by organizations researching new treatments for RA.
What sort of research is being conducted for people like me?
There are many ways to take part in research, one of which is to participate in a clinical trial.
- Treatment efficacy & safety: This could mean taking part in a study for a new treatment that is in development, or even for an existing medication that is now being examined in RA.
- Trial design and drug development: Researchers may also look for your feedback in the design of a clinical trial or the treatment itself (for instance – should it be an injection or a pill?). To learn more about participating in clinical trials, click on the link above and go to the RheumatoidArthritis.net website.)
- Behavioral and impact studies: Other research focuses on gathering information about how people with RA manage their condition and how it impacts their daily lives. Results from our own RA in America survey demonstrate the far-reaching impact of RA.
Why does this matter?
No one understands what it is like to live with RA better than the RA community! Taking part in cutting edge research or providing input on how studies are conducted will have a direct impact on those living with RA.
How do I find out about new research opportunities?
When new research opportunities become available, we will share those with our community members via email and social media. Please note that registered members of the community will always receive the first notifications regarding opportunities. You can register by going to the link above and becoming a member of the RheumatoidArthritis.net community.
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.
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 www.JointDecisions.com).
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 www.JointDecisions.com 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:
- “Unlocking Energy: Understanding the Important Role of Movement and Nutrition in Managing Your RA” on June 15, 2015 at 7 p.m. ET / 4 p.m. PT (featuring Megan Park). Register here: https://event.on24.com/eventRegistration/EventLobbyServlet?target=reg20.jsp&eventid=993278&sessionid=1&key=4A76C4F0C30E297AFE0110BE77BB9989&sourcepage=register
- “Shaping Your Story: Managing the Mental and Emotional Challenges of Life with RA” on August 5, 2015 at 7 p.m. ET / 4 p.m. PT
- “Creating a Strong Foundation: How to Build Your Care Team and Enlist Supporters in Your RA Journey” on September 24, 2015 at 7 p.m. ET / 4 p.m. PT
- “Real Talk: Breaking Down Barriers in Patient and Rheumatologist Communications” in early November
Thanks for checking in.
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 Best 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.)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!”.)
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.
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.
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
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.
We all know that drugs have side effects and there’s a risk-benefit balance between whether the cure is worse than the illness. I’ve been pretty lucky that I haven’t really had any bothersome issues with side effects from my RA drugs other than the occasional injection-site reaction when I’ve started a new drug.
That is, of course, except that leflunomide (Arava) has turned my fine, straight-as-a-stick hair to a kinky, curly mess.
I’ve been on leflunomide for about four years now, starting with 10 mg. a day and increasing to 20 mg. a day about a year and a half ago. The curly hair started innocently enough with a few waves in the back. The waves got progressively curlier and crept from the nape of my neck upward to the crown and around the sides of my head. The top of my head is still just wavy, but I can see the writing on the wall: that someday soon, if I stay on leflunomide, I’m going to look like a beardless Red Foo.
Even though women spend hundreds of thousands of dollars every year getting their hair permed or trying to add body to their hair, I’m not one of them. I like(d) my straight hair. So ever since my hair started going curly, I’ve been begging my rheumatologist to take me off leflunomide. She has been reluctant to do so because we’ve been going through a number of biologics trying to find an effective answer. While we were working on finding the right biologic, she wanted to ensure that we had a DMARD that we know has helped.
That changed today in a rather dramatic fashion.
Similar to having a policeman show up at your door, getting a call from your doctor usually isn’t a good thing, especially when you weren’t expecting it. A call from the nurse, okay. A call from the lab, maybe. An unexpected call from your doctor — probably not.
I had my regular labs done yesterday and my rheumatologist called me today to tell me that my liver tests are way out of whack.
Normal AST levels are between 10-40. In December, mine were a nice, low 24. Today they’re nearly three times as high at 67.
Normal ALT levels are between 7-56. In December, mine were a normal 44. They’ve also increased more than three times to 143 — more than double the normal levels.
So after a discussion of what might have caused such a sudden increase, we came to no conclusions, but my doctor did take me off leflunomide (which impacts the liver) for now.
I learned a long time ago that everything has a price of some kind. Given that it took potential liver damage to get me off leflunomide, I’m not sure I would have made that trade. I reached out to my PCP who has also had me hold off on taking my statin until we have a chance to discuss further.
Geeze. Now if my hair would only go straight at the same rate my liver enzymes went out of whack.
I hope that whatever results you get in your life today make you happy. Thanks for checking in.