Hear Our Voices!

Tags

, , ,


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.

Joint Replacement: A Chat With My Surgeon

Tags

, , , , ,


While certainly not inevitable, joint replacement is a viable treatment option for many people with RA when the effects of joint damage is no longer being adequately managed by other means. I consider myself a veteran having had three (hip, shoulder, and knee – in that order). Pain and decreased range of motion or mobility that interfered with my ability to take care of every day tasks were the driving factors in my decisions to have joint replacement. I suspect the same is true with other patients. But what, I wondered, is the surgeon’s perspective on the subject?

Dr. William F. Tucker, Jr., MD, is a noted orthopaedic surgeon. His areas of special interest and expertise are hip and knee replacement and revision surgery and arthroscopic surgery of the knee and shoulder. He was the first orthopaedic surgeon in Dallas to perform minimally invasive total knee replacement and performs minimally invasive hip replacement where appropriate as well. He instructs practicing Orthopaedic Surgeons in the performance of minimally invasive joint replacement and is a Clinical Professor of Orthopaedic Surgery at the University of Texas Southwestern Medical School. I have been privileged that he and his wonderful staff have been taking excellent care of me for a number of years. We’ve been through a lot together. Not only did he perform both my hip and knee surgeries, he’s done multiple soft-tissue surgeries and more joint injections than I care to remember. He referred me to the highly talented and qualified surgeons who performed my shoulder replacement and back surgeries and, importantly, he’s the physician who referred me to a rheumatologist that led to my diagnosis and treatment for RA. (You can learn more about him on his website, www.williamtuckermd.com.)

The following is a recent conversation Dr. Tucker and I had about joint replacement. Note that this should not be considered medical advice. You should always discuss any medical issues and treatment with your personal health care team.

Read the rest of the article at: http://rheumatoidarthritis.net/living/joint-replacement-a-chat-with-surgeon/

In the know …


Don’t you just love it when you get a sneak peek at something great? Or perhaps learn a wonderful secret before anyone else? I’m feeling that way now after spending some time with Joe Coe and Dr. Ben Nowell of Creaky Joints.

It’s no secret that I’m a fan of Creaky Joints and all the advocacy they do for people with rheumatoid diseases and I feel privileged to be associated with their Joint Decisions team. But I am really, really excited about Arthritis Power, their new arthritis research initiative. Okay, let’s face it. I’m in favor of research into RA because the more knowledge there is, the better chance we have of finding a cure. But not all research projects are created equal. I love this one not only because Creaky Joints is involved, but because the patients who participate in the research get so much back! And yes, the Creaky Joints team has partnered with the outstanding folks at the University of Alabama in Birmingham, so there are some top-notch people behind the initiative as well. But did I mention how great it is for the participants? (Oh, right, I did, but it bears mentioning again.)

Arthritis Power

Arthritis Power

The research is done either through your computer (at the moment) or mainly (coming in May!) an app on your SmartPhone. It tracks five key areas: Pain interference, physical function, sleep disturbance, fatigue and the RAPID3 general health assessment. But not only do they gather this information for their research, you get reports back that let you track this data over time, either for your own use or for sharing with your care team. In addition, you can enter your current drugs/treatments and those are tied in. I love it. It’s not research that sits on a shelf somewhere, it collects information that you can actually use.

One of the things that I love about it is how accessible it is for everyone. Even though the survey is highly scientific, it’s written in very clear language and is easy to enter and navigate (a few clicks of the mouse on the computer).

Obviously, the more participants there are, the better the research, so I’m giving you a heads up that YOU NEED TO SIGN UP FOR THIS. (Sorry, was I yelling? Let me just say that again: YOU NEED TO SIGN UP FOR THIS.)

The one catch? It’s not quite ready for prime time yet. I was given a sneak peek in to the “early access” site that still has some “quirks” and the real launch will happen in May when the smart phone is launched. But if you want to go look now, the link is https://www.creakyjoints.org/arthritis-power/#share.

Be aware that you will be asked to read/sign some consent forms because this isn’t just an ordinary website, this really is serious research so Creaky Joints needs to be sure things are legal. If you’re already a Creaky Joints member, it’s a bit quicker because you can just link to your existing profile. And if you’re not already a Creaky Joints member, you should take a look around the site and see what you’re missing.

At any rate, I hope you’re excited about this research initiative as I am. (And if you’re not, you should be!)

Thanks for checking in.

 

Be careful for what you wish

Tags

, , ,


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.

Red Foo

Red Foo

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.

 

 

Being flexible (redefined …)


I’ve always been flexible. As a youngster I could put my ankles behind my head. Even as an adult I was able to stand and put my palms flat on the floor (in three-inch heels) and stretch to put my forehead to my knees.

All that pretty much came to a screeching halt after my hip replacement surgery a couple of months after my RA diagnosis. Bending more than 90 degrees at the hip can dangerously stress an artificial joint.

Since then, my RA has progressed and my joints have stiffened. Just getting a full range of motion on some days is a major accomplishment.

Read the rest of the post here: http://rheumatoidarthritis.net/living/being-flexible/

 

Two recent things of interest

Tags

, , ,


Seems like I’ve been neglecting my blog lately (more about that in a later post), but I wanted to bring your attention to a couple of interesting things. If you follow the same blogs I do, you may have already learned about these, but I think that just underscores their interest quotient.

Show Us Your Tats!

I don’t have tattoos so I can’t join, but Healthline.com has a wonderful collection of RA-inspired tattoos (who would have thought?) and the inspirational stories behind them. The collection can be seen at the Healthline site:  http://www.healthline.com/health-slideshow/rheumatoid-arthritis-tattoos#2

Healthline is currently accepting new submissions. If you have an RA-related tattoo that you’d like to share (and you know who you are …), send in a clear photo of the tattoo + short description, with the subject “My RA tattoo,” to Nicole Lascurain at nlascurain@healthline.com There are some other guidelines at the beginning at the tattoo slideshow (size of picture, word count, etc.), so please visit there first.

Help Document the RA Patient Experience

I have been having both live and email conversations with Keith Olsen at Zitter Health Insights which gathers both patient and physician experiences connected with various conditions including rheumatoid arthritis through http://www.yourcaremoments.com. They send out various surveys (all of which pay a few $$ each to a PayPal account) that become part of overall research. In the light of full disclosure, the research is then sold but I think that the more information available about RA the better. You can learn more about the experience via Wren’s excellent post at https://rheumablog.wordpress.com/2015/03/09/your-care-moments-surveys-money-for-free/. If you want to sign up, the registration link is www.yourcaremoments.com.

So, enjoy, if you wish to participate. Even though I don’t have tattoos, I loved the slide show and the various stories people shared. I’ve chosen not to participate in the Your Care Moments surveys, but that’s a purely personal decision (I can’t take advantage of every opportunity I’m offered) and has nothing to do with the validity of their program.

Thanks for checking in.

RIP, Michael Graves

Tags

,


Michael Graves is considered an icon of American architecture, lending a brilliantly colored voice to the mosaic of what we consider design. Many know him as the designer of the Portland civic center, which is considered the first postmodern building in the U.S. His greatness in design combined with a trademark whimsy reaches from Disney resorts to the scaffolding for the renovation of the Washington monument.

He felt that good design should be accessible by anyone and extended design aesthetics to everyday objects. His singing stainless teakettle has a built-in comfort

Michael Graves Teakettle

Michael Graves Teakettle

handle that is also heat-resistant (good design) and when the water boils, a bird on the spout sings (whimsy).

What many people don’t know is that Graves became paralyzed from the waist down in 2003 and was confined to a wheelchair for the rest of his life. Graves wasn’t feeling well when he returned from a European business trip and found himself fighting a mysterious infection that led to his permanent disability.

Graves and bathtub handle design

Graves and a bathtub handle design for seniors and those with disabilities.

Rather than defining him, Graves claimed the change in his life made him a stronger designer. He had a first-hand perspective of what accessible design really meant. From addressing Congress to bringing the force of his design aesthetic to everything from building to daily tools, he integrated even more accessibility into both structures and products. He was quoted as saying that good design promotes healing and bad design can inhibit it.

I believe that his focus on accessibility and designing for universal access brought a new level of awareness of those needs to the architectural and design community, not only in the U.S., but globally. And while often a controversial figure in the industry, his designs are nonetheless studied by architectural and design students around the world, training a new generation in thinking about the broader needs of the whole population.

Thank you, Mr. Graves. May you rest in peace and your legacy live on so that future generations are better served.

Buildings at St. Colletta

Buildings at St. Colletta, a school for those with disabilities.

Get Ready for Creaky Joints 2015!

Tags

, ,


I reported last November that I was privileged to become associated with Creaky Joints (www.creakyjoints.org) and specifically the Joint Decisions Team (https://creakyjoints.org/jointdecisions/). Please check out both of these links. These are wonderful resources for those dealing with arthritis (i.e., creaky joints) and they do a great job of advocacy for those of us with rheumatoid and other arthritis disease.

Last evening they offered a preview of some of the activities they have planned for 2015 and it’s going to be great. The ink isn’t quite dry on all the events so I can’t share specifics with you yet, but they’ve pulled together a busy year packed with great information and interactive events. Stay tuned here or check out the Creaky Joints website (link above) for more information.

Thanks for checking in.

Discouraged

Tags

, , ,


this-too-shall-pass1It’s been a crazy start to the year. I reported that in late January and early February I had been working 10- to 14-hour days. To help me make it through the added stress and increase my energy I added 5 mg of prednisone to my daily cocktail of drugs.

I have discussed the occasional use of low-dose steroids with my rheumatologist and I understand what guidelines I can do and which I can’t. A short time on steady dose or a taper is permitted without having to set up an appointment to discuss with her. We’ve been through enough that she trusts me to know when I need it and when I don’t.

So it’s been about three weeks since the project wrapped up and since I went off the prednisone. At first I thought I was suffering from steroid-rebound, feeling worse because I’d stopped the prednisone. But after this length of time, I’m not leveling off, I’m getting progressively worse.

My joints are not only swollen, they’re painful. There are times that my ankles hurt so badly I can barely walk. It’s difficult for me to cook or even to work at the computer for too long because of the pain in my wrists and hands. Bending over is nearly impossible for me as my spine goes through a serious of painful pressure points as I bend and straighten.

If you’ve visited my RA drugs page, you know that I’ve worked my way through most of the biologics plus a couple of the DMARDs. I’ve only been on Kineret for 2.5 months. But given that most biologics will reach their effectiveness in three months, I should be getting better, not worse.

I was originally optimistic about Kineret. I almost immediately started feeling “better”. When I saw my rheumatologist the first time after starting Kineret, my joints were still swollen and tender but not as much as they had been on Remicade. I was definitely trending in the right direction.

Now, not so much.

I’m not supposed to see my rheumatologist again until mid-April. Until then I’m supposed to be taking my Kineret. (By injection. Every. Single. Day.) Taking a biologic drug is a commitment. It’s a conscious decision that the potential side effects are outweighed by the positive effect of RA symptoms. Taking a biologic that doesn’t seem to be working is something else altogether.

I need to go have my labs done. Then I’m going to move up my appointment with my rheumatologist. I don’t want to change drugs again. For one thing, I’m running out of drugs to try. But I also don’t want to keep taking a drug that apparently isn’t working.

There are other things in my life that are causing stress (new working arrangement with my client, my husband’s health issues, etc.). All this combines to just basically discourage me.

I keep reminding myself of the ancient wisdom that’s come down from the ages. No truer words have ever been spoken than, “This, too, shall pass.” And being a person of limited patience, like the sign says, “Now would be good.”

I hope that whatever passes by your life brings you a smile. Thanks for checking in.

Don’t even know where to begin

Tags

, ,


It’s been more than two weeks since I last posted. It’s not that I’ve been ill (that’s the good news), it’s because I have been overwhelmingly, mind-bendingly busy. I promise that if it weren’t for prednisone, caffeine and Scotch, I might not be here to write this post. Here are some quick updates to bring you up to date.

  • I had a project that was due to be shipped last Monday. This necessitated 10 to 14 hour days, for two full weeks (including weekends) — thus the prednisone and caffeine. I was pretty much required to be on site (thus the Scotch — not at the client site, but after I finally made it home). Being on site added an hour a day due to the commute to the client office.
  • Last Monday, I was in the office at 7:00 am after having about four hours sleep. I got home at 3:30 am Monday morning (20.5 hours later). I got 2.5 hours of sleep, then I had to get up to take my husband to the hospital for cardiac ablation procedures. I have committed 30 hours a week to this client, so I think I’m good until sometime next June …
  • My husband has had heart arrhythmia issues since his bypass surgery a few years ago. The problems have increased to the point that his doctors agreed that the ablation procedures were called for. (He had two different kinds of procedures to address the two types of issues he had.) The procedures appear to be quite successful although I think my husband was a bit surprised about how much the surgery took out of him. But less than a week later, he is pretty much back to normal activities. The additional good news is that if things remain calm for a few months, he will probably be able to get off blood thinners.
  • I will tell you that sitting around a hospital waiting room for five hours when you’ve only had six hours of sleep out the previous 48 is very difficult. (More caffeine, more prednisone.)
  • In the midst of all this, I finally got my new insurance pre-approval process completed and have gotten my first shipment of Kineret from their specialty pharmacy. The good news is that the drug will only cost me a $60 copay instead of the previous $150 copay (saving me $90/month). I am saving an additional $900/month on the difference in premium costs on the new insurance vs. the old insurance. The more good news is that the new specialty pharmacy is a dream to work with. Really could not be happier.
  • What should have taken two days to get pre-approval took more than two weeks due to the incompetence of my rheumy’s nurse. This is the same person that caused my Remicade infusions to be delayed starting by more than a week. A discussion with my rheumy seems to have failed to make her realize this incompetence. I seriously considered switching doctors, which is saying a lot because I love my rheumy. I remain hopeful that the nurse’s incompetence will cause her to lose her job, so I can be rid of her and keep my doctor. If not, I will revisit my decision to change doctors. I don’t say this lightly because she’s helped me through a lot this past six years. But I am also lucky to be in an area where there are a number of top-notch rheumatologists I can see if we’ve come to the point where her practice no longer matches my needs.

I have generally been able to catch my life back up this week. My husband has been carrying the household load up until he went into the hospital. Once I got caught up on my rest, I’ve been able to get caught up on other things as well, including (finally) my blog. I apologize to all my blogger friends who have been doing some amazing posts that I haven’t had time to respond to them. Hopefully my life will be calmer in the coming weeks. (Not counting the new client project I just took on and the ice storm that’s headed this way.)

I hope your life has been calm, interesting, and blessed. Thanks for checking in.

Follow

Get every new post delivered to your Inbox.

Join 161 other followers