Biologic treatments for rheumatoid arthritis are some of the most expensive medications on the market. Do you ever wonder if they’re worth it? Do you ever daydream about what you’d do if you could just take the money instead of the treatment? Read my ramblings on the subject on rheumatoidarthritis.net here: https://rheumatoidarthritis.net/living/i-dont-feel-16000-better/
Taking the risk of repeating myself, I think this previous post regarding our invisible disease and Arthritis Awareness Month expresses my thoughts. Please enjoy:
May is Arthritis Awareness Month. Usually starting in April I get inquiries from various groups asking my help in raising awareness of RA and other arthritic conditions. I don’t mind helping out a good cause, but I tend to point out (rather obviously, I think) that people who read my blog are already aware of arthritis. We don’t need reminding. In fact, what most of us want is to become UNAWARE of arthritis. We want all the pain, stiffness, fatigue and other symptoms and especially medical bills to just disappear so we are completely unaware that we’ve ever had the disease.
(This reminds me of the story of Johnny Cash when he played Folsom Prison. He was told not to sing any songs that reminded the men that they were in prison. His wry reply was along the lines of, “Why? Do you think they’ve forgotten?”)
Most of us are caught in the dichotomy of wishing people understood our disease better and going to great lengths to keep it invisible to other people. It’s a tough balance.
I do what most of us do. I show up when I’d rather lie down.
Invisibility is important to many people for lots of reasons. But awareness is crucial for a lot of important reasons, too.
I don’t necessarily want to repeat myself fully here, but in honor of Arthritis Awareness Month, I invite you to read a favorite post of my entitled, “Being (In)visible” at RheumatoidArthritis.net. https://rheumatoidarthritis.net/living/invisible/
Thanks for checking in.
Believing in the truism that a picture is worth a thousand words, I’ve merged the X-rays of my left (anatomical) and right (reverse) shoulder replacements together.
The left/anatomical replacement is so named because it mirrors the body’s natural anatomy. There is a socket in the shoulder that a ball joint — attached to the arm — fits into.
The right/reverse replacement is just the opposite. As you can see from the picture, the ball joint attaches to the shoulder with a disk/socket attached to the arm.
And I don’t understand the technical aspects of why this is, but the primary difference between the two is that my rotator cuff on the left/anatomical side is a primary force in moving the arm/shoulder. However, on the right/reverse shoulder, the rotator cuff is basically bypassed and the deltoid muscle moves the arm. As I have had two previous rotator cuff surgeries on the right shoulder, the reverse replacement was the wiser choice. If they had done the anatomical replacement and I’d had future rotator cuff problems they very probably would not only have had to repair the rotator cuff (again), but remove the implant and do a reverse replacement anyway. Better to start there and avoid the issue altogether.
I hope whatever position your shoulders are in, that you’re both healthy and happy.
There’s an old saying about a successful marriage is not only finding the right partner, it’s about being the right partner. This is also true in the doctor/patient relationship. I discuss ideas of being the right patient in my article for RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/being-the-right-patient/
I used to do a lot of work with public companies (those with stocks listed on an exchange like the New York Stock Exchange). These companies are required to report their operating results to the government and their shareholders on a quarterly basis.
I haven’t issued any stock but I consider the people reading my blog as having a stake (or at least an interest) in what’s going on in my life, so I thought I’d provide a first-quarter update.
There’s good news and there’s bad news. First some of the bad news.
I’ve pretty much failed miserably at my New Year resolutions. Because of shoulder surgery (and not being able to cook with my left hand while my right arm has been in a sling), I’ve been pretty dependent upon my husband to gather food. Therefore my alternate-day fasting has gone by the wayside. I haven’t put ALL the weight back on, but there have been some pounds creeping back. Ditto the resolution to continue walking. Winter weather + bad shoulder = no walking.
The good news is that I went for my follow-up visit with my surgeon today and magic happened. At least it feels like magic. He has taken me out of the sling (unless I feel like I need it) and released me to work my way back to normal life. I can now drive again (starting with short distances) so Uber and I are going to officially break up. I do have home exercises to do to start regaining strength and range of motion. All the X-rays and exams look great. I still have a ways to go, but I am doing well at this point. Which means I should be able to get back on track for my resolutions (right??!!!).
In other good news, last week I had the great pleasure of attending HUConnexion2018 in Philadelphia. Health Union is the organization that hosts rheumatoidarthritis.net as well as a number of other chronic-health related sites (notice I didn’t say “chronic illness”). For the second year, they brought in the people who contribute to their sites for both learning and sharing, and it was an amazing experience. There were almost 100 of us there and I can’t truly explain what it’s like to be in a room of that many people who “get” the challenges you face every day. Plus, they were funny, and witty, and authentic, and determined, and truly inspirational. I was afraid that traveling with a recovering shoulder would make attending difficult, but it was worth all the effort. (And many, many thanks to my #1 travel accessory — my husband who did everything from lug bags to hold my hair dryer for me while I dried my hair one-handed in the morning.)
A bit of sad news. A vibrant, younger cousin lost her short battle with cancer. Basically out of the blue in mid-December they discovered a mass in her brain. She traveled to Houston to the famed M.D. Anderson cancer facility for treatment for a while, but returned home to share her final days with friends and family. I travel to our home state of Kansas this weekend for her funeral. I’ve lost all the older generations of my family but this is the first one who has passed that is younger than me. It’s heartbreaking and unsettling and all the emotions you really don’t want to feel.
In all, I’m glad that the first quarter of the year is behind me. It brought surprises, good and bad, that changed my expectations of how my year would go. I guess life is like that. As the wonderful comedienne, Irma Bombeck used to say, “Life is what happen when you’re making other plans.”
I hope whatever you life holds for you brings you both happiness and fulfillment. Thanks for checking in.
I think we need to change our conversation with our doctors about pain because it’s not really about pain, it’s about getting our lives back. It’s about being productive and healthy and happy and feeling like doing the things we both want and need to do. It’s about the ability to enjoy life again. Pain has the power to take all of that from us.
I can’t help but notice that many alternative pain management methods steal an inordinate amount of time away from patients. While you’re soaking in a hot tub, or meditating, or doing exercises like Tai Chi, or reading, or doing acupuncture, or any one of the myriad other methods that are now being promoted instead of pain medication, you aren’t living your life – you’re dealing with your pain. How do you do these things when you have fulltime commitments like a job or a family? While these methods have been found to be effective, people are still putting their life on hold to deal with the situation.
So our goal, therefore, is to get our life back.
Read the full article at rheumatoidarthritis.net: https://rheumatoidarthritis.net/living/its-not-about-pain-its-about-living/
RA is a serious situation and requires making a lot of tough decisions. After having just gone through my fourth joint replacement, I look back at almost a decade of having RA and discuss those things I rely on to help me make decisions. The article is on RheumatoidArthritis.net, here: https://rheumatoidarthritis.net/living/clarity-in-making-ra-decisions/
First of all, thanks to everyone for the support, virtual hugs, and actual prayers sent my way. I believe that these contributed in a major way to my great progress so far.
I saw the doc for my first post-op visit yesterday, and things are looking good. The things that were making my life miserable (major pain, tape allergies, OIC, etc.) are pretty much behind me. I still get tired easily, although I try to get up/stay up during the day. But mainly my challenge now is just slogging through another month in the sling before I can start serious work rebuilding strength and flexibility. (And start driving again. You cannot live in Dallas without a car!!!!)
So thanks so very much, and thanks for checking in.
I’m having my right shoulder replaced in a couple of days and it’s amazing what needs to be done beforehand! Part of the problem is that my right arm will be in a sling for a while and I can barely scratch my nose with my left hand. So in addition to rearranging all kinds of schedules I have to do a bunch of home stuff while I can still use my right hand.
This is my fourth joint replacement (and my second shoulder replacement) since my RA diagnosis not quite 10 years ago. I keep telling my husband that I’m getting younger instead of older since I have all these new parts.
I also tell him that when I die that instead of burying me, he should just turn me into a hardware store and make a bit of money.
At any rate, I go in for surgery 2/15 and will be in the hospital for at least a couple of days. I’ll try to update as soon as I can, but typing is going to be a challenge for a while.
Looking forward to being back online! Thanks for checking in.