Fatigue seems to be an integral part of RA. Read more in my article on RheumatoidArthritis.net:
Having an “invisible” disease brings a wealth of challenges. I recently had an immersion course in being “visible”. Read about my (semi-comedic) experiences and conclusions at RheumatoidArthritis.net: https://rheumatoidarthritis.net/living/to-be-or-not-to-be-invisible/
Thanks for checking in.
So, pop quiz. Describe your RA in one word. (And please feel free to share your word with the rest of us in the “comments” section below.)
At various times since my diagnosis eight years ago, I’ve been asked to describe or explain or discuss RA a number of times. This latest one-word question was asked as part of RheumatoidArthritis.net’s 2016 RA in America Survey. (If you haven’t taken it, I encourage you to take a few minutes to do so. Links to this year’s survey and the results of last year’s are on their site.)
My word: Relentless.
I’ve used a lot of words to describe my RA, some of them with four letters. And maybe this is just how I’m feeling at the moment. But honestly, I am really, really tired of having RA and its relentless attack.
I go on vacation; RA comes with me. I try to sleep at night; RA wakes me up. I try to get stuff done in the day; RA interrupts. I’m feeling really good; RA decides to flare.
Prior to RA, everything was temporary. Got a cold? Wait a week. Have an infection? Take some antibiotics. Sprain an ankle? Take it easy for a few days. That’s because prior to RA everything would eventually go away.
I think when you’re told that you have a chronic, incurable disease, your mind goes back to prior experience, or at least mine did. And that experience included colds, infections, and sprains that eventually cleared up. I had this image of joint pain popping up a couple of times a year (maybe) then leaving me alone the rest of the time.
I do okay most of the time, but I’ve learned to live with — or perhaps “live around” — RA. I know to move slowly in the morning because everything is going to be stiff and painful for a while (generally until I have a hot shower). I wear comfortable shoes and try to eat right and take my meds and show up to have labs done every four weeks. RA and I have become uncomfortable roommates.
Even on those days where I’m feeling pretty good, I can tell I’m losing ground. I can’t grip as well or as for as long as I used to, even a few months ago. Standing (or for that matter, sitting) for long periods is out of the question. Kind of like a new grey hair or a new “smile line” around my eyes, it seems like I find more evidence of RA’s relentless pursuit every day.
But I also have other words for RA. Words like “hopeful” because there are so many more new treatments on the horizon, and there is so much more education and information and, especially, patient empowerment than ever before.
So share your word (PG13-rated, please). And thanks for checking in.
I read an interesting article the other day concerning the challenges that rheumatologists have treating an aging population. The topic actually surprised me because even though inflammatory diseases can affect people of all ages, the incidence of RA increases with age. Per the CDC the incidence for people 18 to 34 years old is only 8.7 per 100,000 vs. 89 per 100,000 for people 65 to 74 (more than 10 times as great). It would seem, then, that older people would be the primary patient population in a rheumatologist’s office and therefore, there would be a great deal known about treating this particular age group.
Read the rest of this article at RheumatoidArthritis.net here.
This month marks my (count ’em) eighth year of writing this blog. Eight years of documenting treatment plans, surgeries, frustrations, insurance and disability fights, and (yes!) victories. The blog started as a personal journal to document my journey with RA and to keep friends and family up to date with my progress, so I am always amazed to find out other people actually read it and even more astonished when it receives recognition. Healthline.com, which provides a wealth of incredible information, has honored me again (fifth year in a row!) as one of the best rheumatoid arthritis blogs of 2016.
Fortunately I am in good company as Healthline has selected some of the best of the best RA bloggers and health advocates to include in this year’s list. I’m proud to say that many of them are personal friends of mine and to them I offer a well-deserved, “Congratulations!”. I invite you to visit the entire list and if you aren’t acquainted with these talented people and their blogs, that you take a minute to do so. It will be time well spent. See the full list here.
As a member of Joint Decisions, I’m excited to tell you about a Facebook Chat they’re having tomorrow evening, 7/21 at 7 pm Eastern. It’s entitled, “Seeing Eye to Eye: Remedying RA Miscommunications Between Doctors and Patients,” and features Dr. Ellen Field. To join the Facebook chat, visit the Joint Decisions page at the designated time and respond to chat questions by sharing your thoughts in the post’s Comment section. Hope you can attend!
Drugs can have unintended consequences. We want them to do the good stuff to fix the problem we’re having but unfortunately, they usually come along with things we don’t like. I’ve been on several drugs since my RA diagnosis eight years ago, so I’ve seen my share. The good news is that I’ve found that many of these side effects are temporary as your body gets used to taking a new drug and they will often fade completely or be less bothersome over time. Here are some of the more common side effects and how I’ve dealt with them: (read more at RheumatoidArthritis.net)
By all accounts, the protest was peaceful. Both the officers there to assure order and the people involved in the march commented that it was peaceful. Based on video footage, there were people of all races in the crowd.
Then the shots rang out and a dozen people were hit, five of them fatally.
The officers that were shot were not involved in the incidents in Minnesota and Baton Rouge this week. They were there to help ensure the protesters right to Freedom of Speech. Why kill those who are ensuring your freedom?
I do not know what the answer to race relations in our country is. I have grown up in diverse populations all my life and have had friends of all races, religions, and sexual orientations. I have found both good people and idiots in all walks of life. I tend to look at the individual person so it’s hard for me to fathom those who categorically dismiss whole populations because of a difference of skin tone, or how they pray, or who they love.
But the one thing that I do know is that killing each other is not the way to bring us together.
And while the recent high-profile deaths of African Americans by white police officers are seen by many as unwarranted, the killing of Dallas police officers last night was a deliberate act of terror. There is a difference. But the fact is, both need to stop, and more open discussion needs to happen.
My heart breaks for the victims and their families as well as for my city and my country. We are better than this.
Two weeks ago tomorrow I underwent gastrocnemius contracture surgery with a platelet-rich-plasma injection (PRP). Today was my first surgical follow up and the doctor thinks I’m doing as well as I think I am (which is always a good thing).
I traded the stitches in the back of my calf for a series of steri-strips that will fall off in a couple of weeks. While everything is still colored brilliant bruise hues of purples, blues and greens, everything seems to be healing nicely. The really big news is that while I still have to wear my (stupid, hot, uncomfortable) boot during the day and generally walking around, at night I can switch to a lightweight splint that fits on top of my foot. I haven’t really had any pain from the surgery, but the boot is making me crazy, causing pain in my heel and with a Morton’s neuroma I have in that foot. Consequently I wake up frequently at night from that pain. Losing the boot gives me hope for a decent night’s sleep.
I think I’m making good progress. I can walk around the house without crutches or a cane, although on the few occasions I’ve been out of the house, I’ve taken a forearm crutch with me, more for stability than really needing the support.
I’m still a few weeks out from physical therapy, but I’m to start some gentle ankle pumps and rotations, just to help keep things limber. I’ve also been cleared to drive, which is great. My husband has been acting as my chauffeur and I’m sure he’s relieved as well.
The other news is that the doctor has asked me to further delay restarting my RA meds. If it were just a question of wound healing, I’d probably be okay to start back with my Actemra infusion and methotrexate injections. My next infusion should have been this week and I’ve been off methotrexate for three weeks now. The issue is that there is not a lot of data of how these drugs interact with the PRP. And since we don’t want to go to all the trouble of doing the injection, we don’t want to undo it by getting anxious about restarting the RA medication. However, the doctor did approve a low-dose of prednisone in the meantime. Historically, this has been enough to keep me from going into a serious flare, at least for a short period. (Fingers crossed.)
So all in all, a good report. I hope whatever reports you have in your life are also good news. Thanks for checking in.
I apologize that I am very, very late getting this information to you, but Healthline.com is once again featuring a slideshow of rheumatoid arthritis inspired tattoos. Last year’s collection can be seen at: http://www.healthline.com/health-slideshow/rheumatoid-arthritis-tattoos#1
As I am very late, I would encourage to respond quickly. The information (with an email link) is below:
If you’d like to share the story behind your RA tattoo, email us with the subject line “My RA Tattoo” and be sure to include: a photo of your tattoo, a short description of why you got it or why you love it, and your name.