Thursday, February 2, 2023

National Rheumatoid Awareness Day

For many of us, at least those of us in the US, we associate February 2nd with Groundhog's Day. For me, today is National Rheumatoid Awareness Day. I haven't posted on National Rheumatoid Awareness Day since back in 2016 when I wrote about the path to my diagnosis. Groundhog's Day does have a link to how this disease presents/gets treated. As I said back in 2016, "(You can) compare disease onset to the moment the groundhog comes out of his hole to look for his shadow. It's impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome." (source: Rheumatoid Patient Foundation)

Sometimes I'm reticent to talk about RA because I don't want to come off as someone who is seeking pity or sympathy. But having a chronic autoimmune disease is part of who I am and it does impact my every day life. In my early years of having this disease, I kind of wanted to shove my diagnosis under the rug or ignore the fact that I have RA - I took all of my medications, saw my doctor regularly, etc, but I just wanted to be a "normal/typical" 30-something. But as I've gotten older - and wiser - I've recognized that I have to respect the fact that I'm not on an even playing field with my peers. 

So what is RA, you may wonder? Rheumatoid Arthritis is an autoimmune condition that attacks the joints and causes inflammation along with other dangerous conditions. It is also one of the most common autoimmune conditions in the world. An estimated 1.5 million people/1% of the population in the US have it; 70% of those with the disease are women. There is no cure for the condition, but it can go into remission with proper and timely care. 

I was diagnosed with RA in August of 2013 so I am coming up on 10 years of dealing with this disease. You'd think by now my doctor and I would have it all figured out, but like many health conditions, it's a wily disease that requires you to pivot often. I thought that now that we are done having children, my disease would be easier to manage (my RA was HORRIBLE during pregnancy), but my bloodwork in December was pretty crappy and showed the disease was not well-managed, necessitating a drug change. So I'm back on a more potent drug that I was on back when I was first diagnosed; hopefully, with time, I can drop some of my other drugs and reduce my pill burden. I'm on A LOT of drugs to manage it. I take about 5 pills/day morning and night, except for Mondays when I take 4 additional pills in the morning. 

These are all my pill prescriptions which require an am/pm days-of-the-week pillbox. So sexy, right?

Besides my oral meds, I also give myself an injection every other week. I've been on 3 different injections but am hoping to stay on this one (Humira) for quite awhile as I like that it's not weekly and it is the least painful injection of the 3. The consistency of one of the injections was so thick which made the injection uncomfortable. This one is nice and thin and the needle is so very tiny! Thank goodness I don't have any issues with needles! These drugs are insanely expensive - Humira costs about $6,600/month but luckily I only pay $10 out of pocket at most. Since the drug company makes so much money off this drug, they provide co-pay assistance and cover all but $10 of what the insurance company doesn't pay. 

I'm lucky that I got diagnosed at a time when there were excellent drug options available. A former co-worker was diagnosed before the advent of these modern treatments and has permanent deformities in her hands since her disease wasn't well-managed. I'm also lucky that I have a wonderful physician who takes such good care of me. Before I found her, I had a pretty horrible (male) doctor who was never on time (I would wait for an hour plus for appointments) and at one point questioned whether I actually had RA... There is such a process to get approved for the above-mentioned expensive injections. An insurance company would NEVER approve them if it wasn't very clear that I had RA and needed an aggressive, expensive form of treatment. I did get a flare under his care so he eventually came to believe that I did have RA, but that experience pushed me to find a different doctor. 

I don't want it to sound like having RA weighs on my mind all the time; it truly doesn't. Most of the time, I live a full, active, wonderful life. But I have to be more gentle with myself than pre-RA Lisa would have been. I have to prioritize sleep and when I get sick, I have to prioritize rest. I cannot "muscle" my way through a virus and expect my body to recover like a normal person. The drugs I am on suppress my immune system so that it doesn't attack my joints (that's the simplest explanation for what is happening when I have a flare - my immune system goes into overdrive and attacks my joints). Since I have a suppressed immune system, I catch nearly everything the boys bring home and it takes me longer to recover from viruses. 

I also had to be extra extra careful during the pandemic, especially when vaccines were not available. That's why I did not eat in a restaurant until February 2022; it wasn't worth the risk of me getting sick. I had to say no to so many things which made me feel bad/guilty and resulted in some not-so-great comments/reactions from others. But I reminded myself I was following the medical advice of my doctors and making the right decision for myself/my family. I, of course, had the full and complete support of Phil through all of that! 

All that is to say that managing this disease is tricky. On the surface, I appear to be this normal 40-something, but under the surface, that's far from true. I don't personally know anyone with RA - I'm obviously glad that no one I know has this disease but I sometimes wish I had someone to vent to who fully understands how I feel when I have a flare, for example. I am on the wait list for the book, The Invisible Kingdom, which is about managing an invisible chronic illnesses, based on the recommendation of Catherine of The Gilmore Guide to Books. I think that book will be helpful as I'll feel "seen/understood." 

I'll close by saying that writing this post definitely moved me outside my comfort zone... So hopefully I struck the right balance between explaining the disease and acknowledging the challenges it presents without giving off a woe-is-me vibe! 

Any questions? Do you know anyone with RA or another autoimmune disease? 


Lisa Jones said...

Thanks for this Lisa, I have a friend with RA and this post was helpful in understanding the disease and how it impacts your day to day life.
Great insight for those of us with only limited exposure to RA.
I’ve been reading your blog for a few months now but first time commmenter, I was very inspired by this post to say hi!

Anonymous said...

My mom has had RA for 28 years now. She has permanent loss of motion in her wrist due to how quickly it started and it took many years for her to find a drug regiment that was effective. Thank you for sharing to shed some light on the difficulties of living with this disorder!

Kyria @ Travel Spot said...

Happy RA Day! I remember being with you in NC when you were either almost about to figure out what was bothering you or you had just found out. I am so glad you did finally figure it out and are managing it well. I recently found out that my aunt has RA, but she never ever talks about it (my Mom let it slip) or complains or anything. However, she takes a steriod (?) that makes her face really puffy. I am not sure what it is though because I am hesitant to ask because I feel like she is very private about it. I am glad you are sharing your story because it helps me and others understand more what RA is all about!

Elisabeth said...

Hi Lisa. You wrote this post beautifully; you are living with something that is hard to manage and takes careful thought and intention. I'm so proud of you for prioritizing your health; I know it caused some challenges in certain relationships especially during the height of the pandemic and you did the right thing!

I really appreciated this deeper dive into what you have to deal with and how you manage RA. And I do hope and pray that the newest course of medication helps and you can reduce your pill burden over time!

Sending all sorts of love your way <3

Sarah said...

I've heard so many stories lately about doctors who didn't take their patients seriously because they didn't "look sick." It makes me so angry! I'm glad you found providers that can give you the care that you need. This story is also a good reminder that you never really know what is going on with people behind the scenes. Thank you for sharing!

Sarah said...

It is really hard to navigate the world as someone who looks "normal" but has an underlying condition. AND as a mom of young kids, it is really hard to be able to prioritize yourself and the needs of your body. I think it's so cool that you both make it look easy and also take the time to explain your hidden burden.

Sandra said...

Glad you moved outside your comfort zone in writing this post. You did a really great job describing RA and your experience living with it.

Nicole said...

This is so helpful to those of us (me) who don't know much about RA. It sounds dreadfully painful. I am so glad you wrote about it. I can imagine how difficult it must be to present as a perfectly healthy person but to be living as a person with a chronic illness. How exhausting!

Thanks so much for sharing!

Grateful Kae said...

I think you wrote this beautifully! It's the perfect description. My mom has RA but developed it later in life. Although she suffered from fibromyalgia when younger, and that seemed to finally go away after the stressful years of working full time/ raising kids were over. But then she got RA! So who knows. She does infusions and is on meds and all that too. It's well controlled for the most part right now it seems, but she went through some issues a couple years ago now and had a hard time getting the right regimen sorted back out.

Gretchen said...

I’m in my 40’s and deal with several chronic health conditions (Ehlers Danlos and CFS/ME). It’s difficult to have an invisible illness. You’ve captured the experience well - not wanting an illness to define you, but also being unable to ignore your limitations. My husband has RA so I’ve witnessed the pain of RA up close. The drug regime and expense is no joke! Thanks for sharing your story.

Incidentally I’m a new reader of your blog. Before my health issues became more invasive I also worked in finance (as a financial planner and advisor) so I enjoy reading about your work experiences.

coco said...

this is a beautiful post and comes from a vulnerable place so I really admire you opening up about it. it must be at the time frustrating and you seem to have a good attitude toward it. instead of being pissed why you have it, you just focus on how to manage it. it's not easy to deal with a chronic disease but I guess you learn to live with it over time. it's magical that our mind learns to be more resilient as we really want to fee better right?
I used to have constipation in my 20s and saw so many doctors about it. I still suffer from time to time, but I kind of stopped stressing about it but learned what things I need to do to manage it so it won't take over my mind when it happens.
hope you can reduce the meds gradually. that does sound like a lot of pills.

Jeanie said...

My arthritis isn't RA and I don't know much about it so I really appreciate your sharing this and filling u in. Especially for the showing us of some of your routine for managing this. It sounds like you have a good team. And it also sounds like this could be a real challenge at times. Well done, Lisa.

Taya Runs and Reads said...

What an information article! It is amazing some of the things people are struggling through that you can’t see. I’m so glad you found a diagnosis and are able to have drugs that can alleviate some of this. It sounds so challenging! Thank you for sharing

Life of a Doctor's Wife said...

Thank you so much for sharing this, Lisa! It is so good to know more about you and what your life is like, and I think you are incredibly positive and frank about RA and how it affects you. I love the informative aspects of this post, but I also think it's really important to recognize that we might not always know what's going on beneath the surface of someone's life.

Jenny said...

You NEVER give a "woe is me" vibe! I don't know anyone personally- other than you and Wendy, another blogger- who has RA, but my mom had MS. That was obviously not a fun thing to deal with, but she had meds that controlled it pretty well for a long time (she also used to give herself an injection.) I'm glad you talk about your RA because it's important to be reminded sometimes that there are some people who SHOULD NOT be exposed to Covid, so there's a reason for masks and quarantines. Also, it's part of your life and that's what we want to hear about. Thanks for sharing this!

Stephany said...

Thanks for sharing your story, Lisa! While I have known about the ride you've been on with RA (I can't believe it's almost been 10 years since you were first diagnosed!), it's always helpful to learn how you manage the disease and how it affects your day-to-day life. Invisible illnesses like this can be really difficult! You never give off a pitying or "woe is me" vibe; this post was informatative and letting us into the life of a person with RA, which is important!

I hope these new drugs help!