Even though I’m a veteran of joint replacement surgery (hip, shoulder and knee — in that order), I recently found out some interesting things about joint replacement and people with RA. I share them here: https://rheumatoidarthritis.net/living/joint-replacement/
The first is that my birthday happens to be Saturday. The second is that the Dallas Chapter of the Arthritis Foundation is holding their Walk to Cure Arthritis on the same day. Here’s the link. http://www.kintera.org/faf/home/default.asp?ievent=1166058&_ga=2.77723220.1915340304.1494277390-42033948.1448375354
They’re a bit short of their money-raising goal, so if you haven’t gotten my birthday present yet, you can still walk or donate or both!
(Okay, so they’re not exactly having the walk to celebrate my birthday. But if you’re one of those people who believe there are no coincidences — well, there you go.)
Hope whatever you do on Saturday brings you both health and happiness. Thanks for checking in.
The physical pain of a chronic illness is bad enough, but there’s a lot of emotional pain involved as well. A good amount of this is caused by remarks made by other people. Sometimes this is well-meaning (but uninformed) and other times it’s more malicious. After almost a decade with the disease, I’ve come up with some personal tactics to deal with these.
Read about them here: www.rheumatoidarthritis.net/living/sticks-and-stones-arent-the-only-things-that-hurt/
Nothing scares someone with a chronic illness more than changes in health insurance. So I have to admit that I’m terrified.
This doesn’t sneak up on you. About six months before you’re eligible, you start getting mail and emails and phone calls from insurance companies trying to get you to sign up for all the supplemental policies that come along with the government-provided coverage. But sorting it all out, trying to figure out what you’ve got and what’s going to be covered, is a bit of a nightmare.
I take about a dozen prescription medications, not counting my biologic infusion. I searched carefully through the 25 or so prescription plans available to me until I found one that covered most of these meds for a premium that wouldn’t bankrupt me (at least not immediately). As it was, I couldn’t find a plan that covered two of my drugs. One is a blood pressure medication, which is no big deal because there are loads of those. The other is the one that I consider critical because it provides amazing relief for my Sjogren’s symptoms. There is only one substitute that I can find and it doesn’t work as well and it has considerably more side effects. And even though it’s “covered”, it will still cost me more than $100/month.
The really scary part is that I can’t get anyone to tell me whether or not my biologic infusions are covered. I’ve talked to Medicare and they tell me that the fees for giving the infusion will be covered, but they won’t tell me if the drug (which runs about $15,000 retail) is covered. They need to speak to my doctor or the infusion company or both. Even if it is “covered”, if it’s a high-tier drug, it might only be covered at something like 50% — which is well beyond my capability to afford.
Right now I’m doing better than I have in years. My biologic, Simponi Aria (along with methotrexate), is working amazingly. I do not want to go backward. I would like to continue to feel almost human again.
I’ve been given assurances by a wide range of people including my rheumatologist, the infusion company, and even the great folks at Janssen (who manufacture the drug), that it should/will be covered. But I won’t know probably until a few days before my next infusion in June.
The interesting thing is that I consider myself lucky. Given the current uncertainty in the health insurance industry and the chaos that is going on in our legislature about replacing Obamacare, I’m glad I don’t have to face those challenges. At least I have a clear definition of what I’m facing.
I hope whatever you’re facing today brings a smile to you and those you love. Thanks for checking in.
This time last week I had the great privilege of being part of the opening session of HealtheVoices 17. This was the third year that Janssen has sponsored the convergence of online health advocates that represent a wide variety chronic illnesses.
There are times that I think my blog actually does some good (rather than just being a conversation with myself). But I was truly amazed at all the incredible work done by the 105 advocates who attended the conference. There were people with radio shows and podcasts and videos and who head up non-profits and speak before congress and sit on peer review panels for medical trials. The list goes on.
But the important thing is that this conference helps empower those who work daily to make the patient’s voice heard in the health care industry.
With all the important issues facing our nation today, none (IMHO) is more important than health care because everyone is touched by it. And like the canary in the mine shaft, those of us with a chronic illness are impacted the earliest and the most when changes in healthcare occur. We need to initiate the conversation about how proposed changes affect the quality and even the quantity of patients’ lives.
I was very honored to be selected to attend and to gain so much knowledge and energy from both the other attendees as well as the amazing sessions I attended. But this is just a small handful of people and the American healthcare system is huge. We all need to make our voices heard, however we can in whatever manner works for us as individuals.
Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.
After almost a decade of dealing with RA, I thought I’d run across almost everything at least once. A recent infection proved me wrong.
Read the full story here: https://rheumatoidarthritis.net/living/surprising-complications-of-an-infection/
There have been a lot of great advances in medicine in the last few decades, including exciting developments in the treatment of RA. To me, one of the best changes is that patient voices are being heard. I think part of this is that there is so much quality information available at the patient level and that this empowers us to be a more proactive partner in our health care. Studies such as the one on PASS provide the added clinical evidence that our voices are valid.
Read the rest of the article here: https://rheumatoidarthritis.net/living/patient-assessment-used-as-a-clinical-objective-really/
On Thursday, April 13 at 7 pm ET, Megan Starshak (@TheGreatBM) and Keri Ann Flaccomio (@keriannecdotes) will host the first #FinelyTuned Twitter chat, “Being Your Own Advocate in Treatment Decisions,” with special guest Aimed Alliance (@aimedalliance), a non-profit organization committed to improving access and transparency around quality, patient-centered health care. To participate in the conversation that evening, all you have to do is follow the #FinelyTuned hashtag on Twitter.
If you write at all, you will find that you have some pieces of work that you like more than others. They are more fun or more meaningful or compelling than some other things you’ve written. Or you just like them better. I was looking for something completely different and I ran across this post which is truly one of my favorites. Please forgive me for recycling it, but I hope you enjoy it as much as I do.
This morning there was a news story about a “Rules for Kids” book that was compiled by two young girls who both had younger sisters with which to contend. The news story didn’t cover all 187 rules, but it gave a few examples, and I was especially struck by #105 – Tie your shoes or you’ll fall down. What a wonderful way to express the old saying of Proper preparation prevents p— poor performance. (I guess it’s the “Everything I need to know I learned in kindergarten” approach.)
At any rate, it got me to thinking about rules to live by for people with RA. We all have them and, like parents with a new baby, when you’re first diagnosed, it would be nice to have an instruction manual.
Here are my top 10 rules. Feel free to share your own. Thanks for checking in and don’t forget to tie your shoes!
- 1. Remember, it’s a diagnosis, not a death sentence. Many, many people with RA live full, productive lives.
- 2. Do your research, but don’t panic. Thanks to the Internet, there is a wealth of information about the disease from medical sites as well as real-world patients. Learn what you can, but understand that each situation is different and that the worst-case scenarios are just that: “worst case”. There is no pre-defined path for disease progression or even medical treatments.
- 3. Find a rheumatologist that you trust and with whom you can communicate. Don’t be afraid to change rheumatologists if you feel that your concerns are not being addressed. Your future treatment options and well-being are in this person’s care so it’s important you find the “right” doctor. Once you find that person be clear about your health and concerns. S/he can’t help you if you aren’t honest about how you’re doing.
- 4. Give yourself permission: permission to not feel your best, permission to not always do everything, permission to let your body rest when it needs it, permission to live your life to the fullest extent possible.
- 5. Don’t give up. RA will be part of your life going forward. If something isn’t working for you, try another treatment option or augment what you’re doing with other therapies such as physical therapy, massage, etc.
- 6. No one is perfect, but we can all be better. Do the best you can for yourself. Stress, unhealthy food, lack of sleep, and lack of exercise can increase your inflammatory response. Limit those factors and triggers. Make “being healthy(ier)” part of your every-day life.
- 7. Enjoy your life. It’s easy to be overwhelmed by a chronic disease. Sometimes it takes a conscious effort to count your blessings and revisit those things that make you smile. Always keep your sense of humor.
- 8. Share your burden. You’re going to need the help and understanding of your family and friends. They can’t be there for you if you don’t share your needs. Seek out a support group — either in person or any of the wonderful resources on the Internet.
- 9. Take one day at a time. Every day will have its challenges and rewards. RA can turn around 180 degrees in a matter of minutes. Do what you need to and can for today and worry about tomorrow when it comes.
- 10. Tie your shoes or you’ll fall down. In other words, be prepared. Your life will be filled with unexpected challenges. You need to do the best you can for yourself in order to meet them. Take your medications, get your rest, talk to your doctor, share with your friends and family. Then if you need a “Plan B” or if you actually do “fall down”, you’ll be in the best position possible to recover.