RA gives us a lot of things – aches, pains, medical bills and aggravation. But it also affords us the ability to use our creativity and ingenuity to overcome obstacles. I share some of my personal life hacks and tips on RheumatoidArthritis.net here:
As part of the results from the Rheumatoid Arthritis in America 2016 Survey, our friends at RheumatoidArthritis.net have compiled some (IMHO) thought-provoking statistics into the following infographic. Additional information is included in the news release issued today (in which I along with fellow contributor, Mariah Z. are quoted): https://www.eurekalert.org/pub_releases/2016-12/hu-isi121316.php
Thanks to the great folks at RheumatoidArthritis.net and everyone a Health Union for the great work they do for those of us with chronic diseases.
It’s a bit strange, I guess, but I’m always truly surprised when I find out someone reads or follows this blog. You can imagine my amazement, then, when the blog actually gets recognized. Healthline (www.healthline.com) has once again named Carla’s Corner, along with some of my most favorite other blogs, as one of the Best Rheumatoid Arthritis Blogs of 2016. I am indeed honored. Check out the entire list here:
We’ve all heard the warnings about obesity and RA. However, a new study suggests that fat cells may actually trigger an earlier onset of RA and can lengthen the time it takes for treatments to work. But if you have RA, it’s not just as easy as “diet and exercise” to lose those unwanted pounds.
Read the full post here: https://rheumatoidarthritis.net/living/obesity-wait-theres-more/
I’ll admit to being terrified of needles growing up. I’d pass out getting blood drawn or (once) even getting an injection. Fast forward to today and being an RA patient. Not only do I get blood drawn once a month for lab work, I give myself a weekly injection and get regular infusions of a biologic medication.
The decision to use a biologic medication is significant and should be discussed with your doctor before you begin treatment, when you start the treatment and as you move forward. The decision of which treatment that’s right for you is also an important discussion. One of the things to consider is the delivery method. That is to say, are you more comfortable with an injection that you give yourself at home or an infusion administered at a medical facility? Doing your homework before having that discussion with your doctor will help you be prepared and better understand your options. There are some excellent online resources including an entire section dedicated to biologic treatments on JointDecisions.com.
Over the years, my journey with RA has included being on nearly all the biologic treatments, so I’ve had a lot of experience with both injections and infusions. The hardest part for me was getting over the fear of the injection or infusion and the actual experience has not been that bad (even for someone like me who has always disliked needles).
That being said, there are some things to consider for both injections and infusions, including the following:
Biologic injections that you (or a caregiver/loved one) do at home are a convenient alternative because you can determine an injection schedule that works for you. I used to do my injections in the evening. I seldom had any side effects from the medication but if, for example, I developed a mild headache, then I’d generally be in bed asleep for the night and it would be gone when I woke up.
Injectable biologics need to be stored and disposed of correctly. The medications need to be refrigerated which isn’t a problem when you’re at home, but is a consideration if you travel a lot and have to keep the medication cold while away. You should also dispose of the used syringes in a responsible manner. Regulations vary by location but I use a mail-order service that, for a small fee, disposes of my full containers and sends me a new one.
In my opinion, the two biggest considerations are the dosing schedules and syringe type.
The dosage schedules for injectable biologics vary. While the decision on which treatment is the right one for you should be the one with the best chance of success, if the injection schedule is going to be difficult for you, it is something you should discuss with your doctor as part of the overall treatment choice.
Injectable biologics generally come in a prefilled syringe or a prefilled automatic pen injector, and some medications are offered in both forms. Although some medications still come in a vial and syringe combination, the prefilled option is great because they can help eliminate any dosage errors.
The prefilled syringes I have used have all been slightly different, but they all generally resemble the syringes your doctor uses to give you injections. They have a needle on one end and a plunger on the other end with the medication in between. You insert the needle end into the injection site (usually the top of your thigh or your abdomen) and push with the plunger to inject the medication. The really nice thing about the syringes is that you can manage the injection speed to as slow or as fast as you need to be comfortable.
Automatic pen type injectors are, in my opinion, super easy to use. They generally look like a tube with a push button on one end. You press the end of the tube against your skin, push the button and about 10 to 15 seconds later, you’re done until next time. This type of syringe automatically injects the medication for you, eliminating the need to actually inject yourself with a needle, which can be difficult for some people.
I had been on injectable medications for a while when my rheumatologist first changed me to an infusion treatment better suited for me.
I get my infusions at a designated room at my doctor’s office, but I’ve also had one at the hospital and I know people that go to special infusion centers that are set up for these kinds of procedures. The medication is delivered via an IV into your bloodstream. Depending on the medication, the infusion can be as quick as half an hour or may take several hours. However, the time between infusions is usually longer than it is than for injections.
The first time you have an IV (or for me, even the 10th or 12th time) can be scary. This is normal and any anxiety you have should fade over time. I personally have a great infusion nurse who makes it her goal to make me as comfortable as possible and the other infusion nurses I’ve met are very capable and very compassionate.
I occasionally get asked if I have a preference of injections or infusions. Both have their strong points. My personal preference would be NOT to have RA at all and to never have to consider one over the other. But since I do, I’m glad that there are advanced medications out there and that there are good options available to the doctor and to the patient.
I am especially glad there is such a strong community of RA patients and support organizations, such as Joint Decisions (http://www.jointdecisions.com). I feel that the more knowledge someone has, the more empowered they become to manage their condition and have a meaningful dialogue with their doctors. Groups such as Joint Decisions help provide the education and information that help make us better informed people and therefore better advocates for our own healthcare.
This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.
As we enter the season of holiday craziness, I have reprised my Twelve Days of RA. Wishing you all the best for whatever holidays you celebrate this time of year (or avoid as I do). May the new year bring all of us health and happiness.
On the twelfth day of Christmas, RA brought to me:
12 joints a-flaring,
11 scripts a-filling,
10 toes a-throbbing,
9 copays pending,
8 workdays missing,
7 doctors billing,
6 X-rays to be taken,
5 hours sleep!
4 side effects,
3 new tests,
2 swollen knees,
And a new D-M-A-R-D.
“And God bless us, every one.” Tim Cratchit, A Christmas Carol by Charles Dickens
I think it was Labor Day weekend when I heard the first “snowflake” commercial and had this immediate “holiday alert” jolt. At the time I was cleaning in the kitchen and had a spray bottle of cleaner in my hand. It was a full-size bottle with a standard pull spray trigger and it was literally killing my hands to use it. I thought to myself, “Self, you should get some smaller spray bottles with the full-hand triggers that are lighter and easier to use.” Then I remembered I’d probably need four or five of them for each cleaner that I use and since they cost $5 to $10 each, that I’d probably wind up not buying them.
But what a great gift idea for someone with RA. So many times we think about things that would make our life easier, but they somehow get pushed from the “need” list to the bottom of the “want” list.
Read the rest of this post here: https://rheumatoidarthritis.net/living/gift-ideas-for-those/
It seems incredible that it’s been a year since I left full-time employment (thank you, RA). People often ask me what I’ve been up to in the past year. Honestly, I’ve wondered myself, so I’ve done an accounting. Even though I haven’t completely lived up to my goals of finishing my second novel, learning to Tweet, and learning Spanish, it appears that I’ve been pretty busy:
- Medical appointments. I’ve had 96 medical or dental appointments in the last year. Some of these were simply things like labs that don’t count for much, but there was also Achilles tendon surgery. This just covers the actual “have a appointment” times. It doesn’t cover all the times filling prescriptions, managing medications, taking injections at home, and dealing with insurance issues. It’s amazing how much time a chronic disease can steal from your life.
- Books. According to my Amazon account, I have read 61 books in the past year. (This is what I do when I am in a medical waiting room so I had plenty of time!). One of my goals was to expand my narrow reading habits of popular fiction and, taking cues from the New York Time best-sellers list, I’ve discovered some amazing authors.
- Advocacy. I’ve been a bit more active this year, with 93 posts here, on RheumatoidArthritis.net, and Mango Health. Thanks to the generosity of Janssen Biotech who sponsored my travel expenses, I was able to meet up with other health advocates at HealtheVoices in Chicago and Joint Decisions in Philadelphia. I’ve signed up for the 50statenetwork.com to get more involved in 2017.
- Travel. This has been a busy travel year for us. Since I “retired” last year, I’ve been to Las Vegas three times, Austin (TX), the UK (London, Edinburgh, Glasgow, and Norwich — to meet the great Penguin), New York, New Orleans, Arkansas, Chicago, and Philadelphia. Between now and the end of the year, we have upcoming trips to Spain and back to New Orleans and Las Vegas. We actually canceled trips to Jamaica, Miami, and a second trip to New Orleans.
- Weight. One of my main goals was to improve my health and central to that goal was losing some weight. I’ve lost 25 pounds this year. Actually I’ve lost more than that because prednisone and Lyrica keep putting the pounds back on and I have to lose them all over again.
- Jam. I’ve made about 32 pints of homemade jam. After the first batch, I learned about making sugar-free jam, which has helped with the weight-loss goals above.
- Spanish. I actually just started learning some Spanish via the Duolingo app on my phone, but I am at 8% fluent — which is a lot better than I used to be. I am embarrassed at having spent so much of my life in the Southwest and to be as “unfluent” as I am. (Right now I can say such useful phrases as “My duck eats bread” which I am sure will be very handy for my upcoming trip to Spain.)
- Disability. I fought through a disability claim as well as filing for disability via Social Security this year. It’s hard to overstate how time-consuming and taxing that was dealing with all the red tape and frustration. But it worked out in the end. I think that once RA becomes a more recognized disease, people who can no longer work due to their health will have a better opportunity of receiving the benefits available to them.
- RA treatments. I was on Actemra injections. Then I went on Actemra infusions. Then we increased the Actemra infusion dosage and added methotrexate. Then we added Mobic/meloxicam. Since none of that seems to be working, now we’re moving to Simponi Aria with a bit of prednisone to tide me over until that happens. Sigh.
- Tweets and novels. Okay, so I’ve sort of dipped my little toe into the Twitter pool, but I’m a long way of saying that “I Tweet.” But I am better than I was. However, the second book is still sitting on the virtual shelf continuing to gather dust. I need a goal for 2017, so perhaps I’ll roll that one forward. If you haven’t already read my award-winning first book which is basically a trashy paperback novel with no socially redeeming qualities whatsoever, it’s not too late to order it for those questionable people on your Christmas list here. You can apparently buy it for $2.99 on the Kindle version.
So it’s been a busy year. I hope that your year has been good to you and that the upcoming holiday season will be filled with peace, love, and health. Thanks for checking in.
I’m embarrassed that it’s taken me this long to post about the wonderful experience afforded me by attending this year’s Joint Decisions Empowerment Summit. This is my third Summit and it brings together some of the bloggers and advocates I admire most, including:
- Wren from Rheumablog
- Angela from Inflamed: Living with Rheumatoid Arthritis
- Mariah from This Point Forward
- Cathy from The Life And Adventures of Cateepoo
- Kirsten from Not Standing Still’s Disease (and Chronic Sex)
- Molly from And Then You’re At Jax
- Kenzie from Life According to Kenz
- Rick from RADiabetes
The conference is supported by/brought together/made possible by the great folks at Joint Decisions, Creaky Joints, Janssen Biotech, and Tonic Life. This year’s theme, was “Love” as it was held in Philadelphia, the City of Brotherly Love.
One of the main things I get from the Summit is, indeed, empowerment. Having RA is exhausting. Having RA and writing about it can be overwhelming. But coming together with this great group of people, exchanging ideas, learning new things is amazingly energizing.
Part of the Summit was spent on what Joint Decisions has on tap for 2017. I applaud the work Joint Decisions does to support people who are living with RA, so if you aren’t already following Joint Decisions on Facebook you can do so here to stay in the know – and at the Summit they also announced the launch of their Instagram!
But there was a special treat for attendees this year. We were given a look behind the scenes with a BioTour of Janssen’s facilities. Learning about the complexities of researching, developing, getting approval for, then manufacturing and distributing biologics was amazing. The most incredible part was being able to spend time with Janssen scientists and executives who were very generous with their time and very open to answering our questions and discussing patient-centered concerns.
I am a strong proponent for the patient’s voice being heard throughout the medical profession. Because of initiatives like Joint Decisions and the sponsorship of Janssen, our voice is gaining volume and attention. I can’t thank you enough.
Janssen Biotech, Inc. paid for my travel expenses for the Summit. All thoughts and opinions expressed here are my own.