RA is Tricksy: Wandering by The Two Towers
I hope you enjoy this little guest post from Dana. Her imagination wanders in a way that’s similar to some other fun trips we’ve taken with Goldilocks, the Princess and the Pea, and others. Please visit Dana’s blog; she’s been a great ally to our effort here for a long time and significant voice of hope and reason and humor.
A funny thing happened on way to see The Two Towers
When having a discussion about RA the other day, I suddenly had this vision of Gollum from The Lord of the Rings in my head. (I’m sure it had nothing to do with the fact that we were headed that night to see the director’s cut of The Two Towers at our local theater.) If you’re unfamiliar with The Lord of the Rings, Gollum is a creature who was once a human-like hobbit, but his one-time possession of “The Ring” and all-consuming lust for getting it back eventually left him as little more than a goblin-like skeleton of a being. At one point in the movie, The Two Towers, Gollum is arguing with himself over the trustworthiness of the hobbits he’s with, and I picture him saying this in his raspy, whiny voice:
“Sneaky little hobbitses RA. Wicked, tricksy, false!”
I don’t know about you, but I think those words about Rheumatoid Arthritis quite often. RA is sneaky. You may feel fine one day, and wake up the next day hardly able to get out of bed. Symptoms come on suddenly, often when you’re least expecting it. It comes on without warning, yet somehow slinks to the shadows during doctor’s visits (the physician presence effect?). It may feel bad, but not look bad. You may have symptoms, but not the blood work to verify your diagnoses. It’s sneaky all right.
RA is very “tricksy” too.
I think the “tricksiest” part about Rheumatoid Arthritis is that it seldom looks or acts consistently. It’s different for each person, and it’s different within each person day to day or over time. Read all of the RA onset stories and you’ll notice that no two of them are alike. Different symptoms manifest in different patients. There is a broad range in the severity of the disease and how quickly it progresses. Some treatments work great for some people with RA; different treatments work well for other patients; some patients aren’t helped by any current treatments. Sometimes moving makes you feel better; sometime moving makes you feel worse. For some, the symptoms come and go, in a series of flares and lulls without any apparent rhyme or reason. For others, it’s a constant state of flare, with no real relief in sight. Some people can identify triggers for their flares, but again, it’s not the same for everybody.
It’s no wonder RA is so difficult to diagnose and treat. Until we truly have an understanding of this disease (or possibly group of diseases?) it will be impossible to appropriately treat each case. My hope is that, through research, we can come to understand the “tricksy” nature of Rheumatoid Arthritis and learn to beat it at its own “trickses.”
What “trickses” has Rheumatoid Arthritis been playing on you lately?
Recommended reading
- A Fairy Tale for Rheumatoid Arthritis Warriors
- Encountering Signs of Rheumatoid Arthritis: A Modern Princess and the Pea
- My Quest for Answers to Questions About Rheumatoid Arthritis
- Airport, Storms, and DMV: April Fool’s!
That if I just try harder I can be like everyone else and “not letting people down” won’t be such a driving force. Trying hard probably just makes me flare worse. Very tricksie!
I was thinking about that one a lot today Arlene. Got a couple of emails in the last month to that effect: just try harder.
My RA journey just started in December, but I’ve learned that its an overnight monster. I woke up with carpal tunnel in both hands, have had two surgeries. I woke up with it in my shoulders, and now I have limited range of motion. Most recently (like three weeks ago) I woke up with my toe sticking straight up. Turns out I’ve ripped a tendon and will be facing my 9th foot surgery. It is the most tricksy thing I’ve ever encountered.
My latest RA “trickses” has been that after having this disease for years, it has affected a new joint that has me in agony at times. The sternoclavicular joint must play a very important part indeed, as it hurts badly when i breathe, move my arm or shoulder, neck or turn the head. I am looking for that golden ring. Til then, my rheum injected the joint and placed me in a shoulder immobilizer, plus an additional burst of oral steroids.
Great work, Dana!Thanks for the article.
Thanks, Julie. Sorry about all the “trickses”! Yikes…it’s never fun to discover a newly affected joint, but that one sounds particularly bad. Hope you find that ring soon, and feel better! 😉
Great post and one that I too have contemplated on my blog…so curious how all of us ponder this issue with RA…great post!
Tonight, I resigned from the community symphony orchestra. I was invited to join in October, two weeks before I was slammed with symptoms that would lead to my diagnosis. Tonight I’m mad at this trickster that kept me hoping with a few good days scattered here and there, days when my fingers moved with quickness and agility, that I could continue. However, after rehearsals for the breakoff chamber group Tuesday night, I’ve been in bed for two days, recovering, with hands that wouldn’t allow me to practice the orchestra’s music. I finally faced facts. In anticipation of this day, I talked to the concert mistress previously, and I’ll attempt to fill a role as the orchestra’s music librarian, at least maintaining my contact with others who love music, but it won’t be the same as sitting among them.
Feeling so sad for you Linda. I hope you get another chance one day!
How hard that muat be for you – bt glad to see you are going to continue on as the orchestra’s music librarian – RA continues to pull these nasty tricks on us warriors but we have each other to rely on and encourage us on this unwanted journey! I will keep you in my Prayers and sending gentle hugs.
Thank you, Rhonda.
I’ve read the Hobbit and Trilogy and appreciate the analogies–I’m more of a Harry Potter fan and see this disease as a huge group of Dementors, sucking all happiness and enjoyment out of life. It’s like the disease is trying to take our souls, which is, after all, our lives (now and before RA) as well as the souls and lives of those who support us. Thanks for this understanding post!
You know, Kelly, I have to thank you, though, for all the posts and comments that helped me to move from denial: I don’t really have RA (despite positive ANA, high RF and anti-CCP antibodies), the medications will quickly bring me back to normal, and all those sorts of things. This blog pushed me to decide where I would expend my now-limited energy, and I’m grateful for that push. I could give up keeping the house clean–which I had to give up anyway–but, ultimately, I didn’t want to expend all my energy on trying to accomplish something that was no longer achievable. I have five young grandchildren who want to spend time with me. I have a novel to finish if I ever hope to have my fiction published again. I’m a good writer but I had to face the truth that I’m not going to progress with my violin playing.
Ultimately, I’m also grateful that I began violin lessons at 58 and then jumped at the chance to be in the orchestra when I was invited, rather than waiting until I thought I was ready. My daughters and grandchildren saw that they can still have dreams for themselves at 61. I’m sad and coming back next week as the orchestra’s librarian rather than as a violinist will admittedly be tough. However, after I wrote that comment, I sat on the back porch with a book downloaded to a netbook, reading as twilight descended, my golden retrievers at my feet. Because of the forum you provide, I knew that I had been heard when I wrote that comment, that others understood. My so-not-touchy-feely husband has been attentive. I’ve been struggling with this decision for months, so it felt peaceful. Thanks again for all you do.
Here’s a trickster for me that’s becoming far too common: Perhaps it’s been discussed before on Kelly’s blog, but I’ve missed it. Some days, my brain feels like mush or scrambled–for lack of a better way to describe– making it nearly impossible to work, even on days when there are only aches and stiffness, no severe pain. I’m uncoordinated, clumsy, and more… And the day moves along seemingly in slow motion, my brain not fully functioning. Those days are becoming more frequent and intense. So I did brief research and recently found a report online on a study that found cognitive decline in 30% of RA patients, regardless of disability or length of time since diagnosis. Do others experience this? Is that part of the malaise of RA?
Terri, I think it took many months for my diagnosis because I wasn’t even mentioning joint pain to my doctors. All 61-year-olds have joint pain, was my assumption, and, besides, I was so used to pain, I didn’t even register it as a symptom worth mentioning. It was the stumbling, clumsiness, fatigue and mental fog that were my biggest concerns and primary symptoms. When the neurologist I had seen asked me what were my main concerns, that’s what I mentioned. Thank goodness, she realized what was happening and ran the first tests for an autoimmune disorder. So, you’re not alone.
Thank you, Linda. Again, it’s reassuring to know we’re not alone, and others experience some of the same symptoms.
CORRECTION: the study found “significant cognitive decline”
Oh yes, trickses! I have this RA trickses issue going on right now:
So Humira started failing in January this year and I switched to weekly dose from every other week. That held until May. Then my CRP jumped to the highest it had been, ever, on Humira, then stiffness returned. As May turned to June the symptoms of RA trended to include the bigger joints as well as hands & feet, fatigue set in again. I decided to switch to Enbrel. Although the Humira was still working somewhat it was a far cry from how it had worked 9 months ago and I thought it in my best interest to switch before complete failure; I wanted to be strong coming into what may be a run of flaring as we made the change. Also I’d promised myself when I was diagnosed to treat my RA aggressively and always go for remission.
Now for the trickses part….After I’d made the decision to switch bios my CRP dropped to normal and within just a few decimals of my all time low. Then in the days following my last injection (June 23rd), my stiffness eased and many symptoms improved.
For the last two weeks I’ve been REALLY second guessing my decision… what if I’d been on the edge of remission? What if I just blew my chances forever?
Well I did my first shot of Enbrel yesterday. I am hoping that my RA was only doing it’s usual trickses. I think it’s important that we look at several months of flare trending when switching treatments. Over the last 6 months my treatment has been failing, that’s the big picture. It was hard not to throw a good decision out the window because I felt better for a few days…..RA is so tricksee that way.
I can attest to the “tricksiness” of RA. I helped a friend pack a moving truck this past weekend, and was almost what one could consider “normal” throughout the process. Yesterday, when everything was done, I felt the RA pain and fatigue hit like a ton of bricks. Literally, I went from being in the OK range at breakfast time to being unable to break a piece of romaine lettuce off the stalk at lunch. My immediate family understood and knew what to do. My MIL thought I was just being lazy and anti-social. Chalk one up for RA making relationships more challenging.
great example Jeanette. Thanks.
I am currently waiting on results from blood work and x-rays of my hands and feet. I have an appointment with my RA specialist next Wednesday. I am new to this site and I can already see that it will be very helpful. From what I have already read I am experiencing some of the common and not so common symptoms of RA; although I have not been officially diagnosed. Yes I totally agree “RA is Tricksy”; I have good and bad days. I look totally normal to my family; until I wait up with that “look” that something is just not right. As I am typing this post my left wrist is making a “popping” sound as if the bones in there needed some WD-40 to lubricate… I’ve also experienced migraines; shooting “electric” type pain in my right leg and a weird numbness in the toes between my big toe and pinky toe in my left foot. Well, let’s see what the Doc say next Wednesday. Thank you Kelly for this wonderful site full of great information and encouragement!!!
Thanks, Mabel. Welcome.
Kelly,
This picture of a ‘fiery Arthritis Ring’… I think if you were to ‘copy’ that and have those silicone ‘awareness’ bracelets made and put into your ‘t-shirts and gear’ store, you would sell a bunch! I would be the first to buy!!! Suzie
Great idea Suzie, I’ll try to figure out how to make the fire appear. 😉 Ideas?
That is a good idea, Suzie! I wonder if you can get patterned bracelets to resemble the flames? The ring itself would make a pretty cool “medical alert” piece, too ;o)
Dana, I’m not sure, but I will be poking around to see what I can find. At the very least, they could even say ‘RHEUMATOID ARTHRITIS WARRIOR’, like the other products do…
Oh, and when you do, please have ‘youth size’ available – these bands are pretty big, and I know I wear a youth size ‘LIVESTRONG’ one…
Second!
RA is oh so definitively a big trickster alright! It has had me flaring like crazy-ALL my joints burning and achy, y’all know what I mean, only for me to find out that all the kidney infections I keep getting are because the tricky RA has set up home in them! AND I have Lupus too gosh could nothing wait until WINTER! Dana, This was so well written. Thank-you for a different and interesting point of view. <3