There are many ways to deal with chronic arthritis pain. Today I choose to write about it in a very simple way, by composing a haiku. Yep, I said “haiku.” I blame the haiku idea on feeling generally quirky today.
Mission accomplished: I entertained myself. Bonus points if: I entertain you. Write your own chronic pain haiku in the comments. Let’s have some fun with this!
Jasmine blooms
Inflammation aggravates
Pharmacy closes soon
What do these three seemingly unrelated things have in common?
They were all in Westwood, California this afternoon. Shia LaBeouf (Megan Fox, if she’s more your style) was presumably attending the premiere of Transformers: Revenge of the Fallen, at the Mann Bruin while I was tending to my rheumatoid arthritis at my rheumatologist’s office.
All this Hollywood fuss nearly made me late to my appointment.
Only in Los Angeles…
I ran across an interesting article about how gum disease might be linked to Rheumatoid Arthritis. A recent study concluded that when patients received treatment for their gum disease, their RA symptoms improved. From the article:
The study, published in the Journal of Periodontology, found treating gum disease was linked with reduced joint pain, fewer swollen joints and less morning stiffness in patients suffering from a severe form of rheumatoid arthritis.
Take care of those gums!
Via UPI [Treating gums helps rheumatoid arthritis]
Wanted to get this up before I head to work, so I’m re-posting part of an article that appears on ArthritisToday.com:
The U.S. Food and Drug Administration has given its nod to certolizumab pegol (Cimzia), a drug previously approved to treat Crohn’s disease, to also treat moderate to severe rheumatoid arthritis.
Certolizumab pegol belongs to a class of biologic drugs that block an inflammatory protein called tumor necrosis factor alpha, or TNF-alpha. Other drugs in this category include etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira) and golimumab (Simponi), which was approved last month.
Cimzia’s molecule is slightly different from the other drugs in its class, however, because it is pegylated, or coated, a process that, in theory, should help it slip by the body’s immune system more easily and may make it less likely to cause an infusion reaction.
Pegylation may also help the drug work more quickly. According to UCB, the Belgian company that makes certolizumab pegol, when used in conjunction with methotrexate, patients in clinical trials for Cimzia reported a reduction in symptoms as early as the first week.
Certolizumab pegol is administered with at-home injections, which can be given every two or four weeks.
We all have them, right? For me, they sometimes occur several times a day. I’m talking about small incidents that sprout into a slap across the face that translates to, “You can’t do that, you dolt! You have an f’d up immune system.”
Yesterday, at lunch with co-workers, I couldn’t complete a seemingly simple task. I tried to cut off a piece of pizza with that server/spatula thingy (not a knife) and after what seemed like two long minutes (it was probably 15 seconds) of frustrated slicing with a dull object and no wrist strength, I finally gave up and asked my co-worker to finish what I started. I felt defeated.
Defeated! I realize this sounds completely ridiculous. But it’s inane times like these that I often get most frustrated with my arthritis. A day of 24/7 dull pain? No problem. Can’t separate a piece of pizza piece from the others? I become seriously annoyed.
I can’t be the only one who feels like that. Am I? Bueller?
I don’t know about you, but if I don’t get a good night’s sleep, I am worthless the next day. Sometimes the pain from my arthritis prevents me from getting a quality night’s sleep, other times, I prevent myself from getting a good night’s rest by simply staying up too late. So, I was excited to learn that a great site called CreakyJoints (from their website: a community for people of all ages with arthritis) will be hosting a free patient education seminar about getting a good night’s sleep on Thursday, February 12 from 7-8:15 p.m. ET. Participants have two options for joining.
Register to participate by clicking here. For more information about the event, click here.
If any of you out there have your own tips about resting well at night, please feel free to share them in the comments.
I wimped out. Here I thought I was finally feeling comfortable enough in my arthritis skin that I could discuss it with almost anybody, but when I stared straight into the face of a perfect opportunity to "share my story." I totally wimped out.
Note: It’s been a few weeks since this incident and since I began writing this post, and I have mellowed out and am not "beating myself up" so much for my perceived failure.
Here are the details of that day a few weeks ago: I was at lunch with three coworkers. One is aware that I have arthritis, but doesn’t really know the particulars beyond that. The four of us began discussing allergy shots, which led to a quick rant on how giving yourself or someone else a shot is icky and inconceivable. I agreed that it is icky, but I also wanted to share with them that when someone is given the option to feel better and it involves giving themselves a shot, you’d be surprised how quickly the squeamish muster the strength to pull the trigger and release the hounds. I am the poster child for this.
I talked myself out of sharing with them that I have arthritis about 10 times in a matter of a minute. I think the reason for this partially hinged on my mental state that day. I wasn’t feeling particularly confident. I was also worried about their reaction to this information — would they ultimately understand why I was sharing this information with them? Maybe they would wonder why someone who looks physically normal would have to give themselves a shot twice a week? I hate feeling misunderstood. Would they feel sorry for me? I don’t want them to. Arthritis is just part of who I am.
< Loud sigh > Sharing your story and information about your disease is always complicated.
Determining the appropriate amount of information to divulge is a challenge. Once you decide to open up about arthritis, then you have to decide how much to tell. I personally don’t want to overwhelm people with information about a disease they really can’t see. Often, no matter how much information we offer, people just don’t "get it" the way we wish they did.
Despite that, I believe there are a number of good reasons to make my battle with arthritis public knowledge. It allows people to get to know me better. It propels me to continually strive towards full acceptance of my disease. Discussing my chronic condition will raise awareness about this disease, especially the fact that it affects young adults and children. Maybe that awareness will eventually translate into research dollars or more compassion towards arthritis patients.
We know that when most people think of arthritis, they think of older people with crooked fingers. They don’t know about the fatigue or the chronic pain or all the maintenance medications that I happily consume even though one of them might saddle me with lymphoma some day.
For a long time, only a few of my close friends and some family members knew that I had arthritis. Back when I was diagnosed with arthritis I was a very private person. I wanted to control very carefully what people knew about me. On top of that, I had no idea what this disease meant to me personally.
As I write this post, I realize that I have a lot to be proud of. I am finding my niche in the world as a person living with arthritis. And the bottom line is that I am the most comfortable and confident as I have ever been as a young woman with Rheumatoid Arthritis. It will always be a struggle to determine who to let in to my arthritis world and how much to tell them. The fact is, no one is truly going to understand the way we wish they would unless they are going through it themselves. In order to cope we need to be connected to people who understand life with a chronic disease. Arthritis warriors "get it" and that’s why we must stick together.
Thanks to all of my arthritis friends out there for their support and insight! You guys are the best.
During president-elect Barak Obama’s 30 minute special that ran the week before the election on multiple national TV networks, he highlighted the struggle that Larry and Juanita Stuart of Ohio face on a daily basis: Juanita has rheumatoid arthritis and their mounting health care bills have forced Larry out of retirement that he had worked so hard to earn.
I have empathy for Larry and Juanita Stuart’s struggle, and I also have deep gratitude for their willingness to share their story. Rarely is the topic of any form arthritis brought to light in such a grand scale. I hope that it helps to raise awareness.
If you have trouble viewing the embedded video below, click here .
Forward the video to 7 1/2 minutes to see the segment on rheumatoid arthritis.
Hey gang, apologies for my sporadic posting lately. It seems that after I came down with a virus in September that I have not been good about getting myself back on a regular posting schedule. I think it’s a combination of simply being quite busy and also feeling spent at the end of the day. I come home from working eight hours and just want to veg, but then, of course, feel bad about just vegging because there are twenty other things I “should” be doing. It’s not like someone is standing over me, wagging their finger saying, “Sheryl, you should be cleaning your kitchen.” It’s always my voice that just can’t seem to give myself a break. Argh, I think I will be working on managing (and talking back to) that voice for the rest of my life. I digress…
The good news is, I’m back in action and committed to resuming my regular postings. Please feel free to join the discussion and comment. I’d love to hear from you!
I’ve had RA for 11 years, yet I still need to be reminded to be good to my body and not overdo it. Two weeks after the Juvenile Arthritis Conference, feeling more committed to taking better care of myself, I went down to San Diego for the annual monstrosity that is Comic-Con. For those of you who have never been, the convention is a gigantic world where comic books, movies, TV, collectibles (and more) collide to create a sensory overload. Trust me. It’s a whole lot of fun, but it means a lot of walking and standing. These lessons may seem obvious, but when you mix Rheumatoid Arthritis with stubbornness… well, you guys understand.
The Lessons:
How do you manage a long day of standing and walking? Leave your suggestions in the comments.
