In the words of Ross Geller “I’m fine, totally fine…”
There is one question almost everyone asks these days, and it goes something like this:
Friend: I want to ask how you are doing, but I am afraid I know the answer
Me: Well, it would be lying to say I am fine/it’s going, unless we are using the Midwestern definition and then probably accurate
Me: you know how I run marathons because I know there is a time when I won’t be able to?
Friend: Yep
Me: It turns out I didn’t understand how much most of us, including myself, take all the little movements we need to go about our day for granted. We don’t think about holding a fork or cup, opening a door, shoving an object to the side with our foot or knee, or getting out of bed
Right now, those very movements often hurt. Unbending or bending my elbows or knees can feel like someone took a hot knife with a wire attached to it, and then cut into and electrocuted me. I feel like I am a tough cookie when it comes to pain given everything (eg, the other chronic illnesses, the countless tattoos in painful places). I didn’t even cry when I had the kidney stone compounded by a kidney infection, which according to sources who would know, is a pain equivalent or worse than labor. Yet, in those moments that I (un)bend my elbow or knee after not moving for a while, I would give anything to experience the pain from the kidney stone over this.
But I guess that is what happens when your body becomes a variation of a nursey rhyme, and instead of it being “head, shoulders, knees, and toes” it is “hands, elbows, knees, and toes” and they really don’t want to work.
So, have to say, having rheumatoid arthritis (RA) is definitely zero stars, 0/10, do not recommend.
Friends, and even well-meaning folks on my care team, have suggested taking up hobbies like knitting and Legos while I rest and let the meds do their thing (though in fairness Legos, I would love to make any of the flower bouquets, and I do use a few Legos for a PT exercise). Umm…sure because those things will definitely feel good when there are days I cannot hold a fork without pain, and generally can’t even enjoy any of the things that reduce stress/bring me joy right like cooking and baking due to the pain in my hands, wrists, and elbows, so how does one expect me to knit? The suggestion almost makes me laugh at the absurdity of it all.
And I would love to say that the RA isn’t affecting my depression, but my symptoms are back to being severe. There are days when passive ideation gets overwhelming, and I stare out at the road and think it wouldn’t be so bad if I got hit by that car, or if I didn’t wake up in the morning that would be ok, because at least then I wouldn’t be a burden to others. And before you freak out, I do recognize that those thoughts are the depression talking. Also, I will take the passive over active ideation any day of the week, it is a lot easier to stop/interrupt passive ideation thoughts. Yet, sometimes I feel like I failed, like I did all this work to improve my mental health, and yet I am right back here, again. I know that feeling of failure is the depression talking, too; as 3 years ago, I wouldn’t have listened to my care team or respected the boundaries I put in place…and likely ended up in the hospital, or worse. But managing the severity of my depression is another weight I have to lift to make it through the day, and that burden, sometimes it feels too heavy to lift anymore on top of everything else. It’s exhausting.
Not tired, exhausting. I wake up exhausted, and go to bed exhausted. Honestly, I am not sure there is a moment right now where I don’t feel exhausted. Most days I am faced with the decision on of which of these things can I do, occupational/physical therapy, cleaning around the house or other activities of daily living, and honestly if I can only choose one, I choose the OT/PT, because at least that is helping me to get back some of the movement and mechanics I lost due to the RA. But it’s embarrassing to admit that is how exhausted I am. It hurt when I told someone how bad it was, and some days I don’t even have energy to shower, and they went well okay stinky. I know their comment was in jest, they were simply trying to make me laugh because that person loves me and would drop anything for me, but it still hurt.
Right now, 90% of the time, I have zero quality of life. Yet, I constantly get asked “are you feeling better yet?” and I know what folks really mean is, “I really hope you are feeling better, I am hoping you will tell me the medicine is starting to make your symptoms better” so you can get back to being you and doing the things you love including your job, but that is not how that question feels to me at all. Maybe how the question feels to me is due to being chronically ill, especially with invisible disease(s) for 30 years, in a society that often makes one feel like a second-class citizen, but the question just feels like it is filled with judgement. In my head, what I hear is “what the fuck is wrong with you?” “How can you NOT be better already? It’s just RA.” I don’t think people understand that how much framing a “how are you” question in that manner hurts. Every time I get asked it, I feel as if my shoulders slump, and my body tries to make itself as small as possible, as if to protect itself from hurt, even though its emotional, and unintended hurt.
Sometimes I wonder why folks think I can just shrug my situation off when I have high levels of RA disease activity, on top of five other chronic illnesses, almost all of which the RA impacts. I have to remind myself that folks are used to me wearing the mask I have learned to wear due to being chronically ill since I was kid. I may try to not wear my “mask” as much these days, but it’s still my default. I have to remind myself that those who care about me are used to me finding a way to not break and do things like run marathons even though it is against medical advice. I mean, I ran two marathons last fall within a month of one another, and honest to god I look like I am just out for a stroll at times in photos from the London Marathon.
But why do I have to say the quiet part out loud? That I am far from fine.
Have I improved from early to mid-January from when my disease activity continued to worsen? 100%. My disease is at least stable now, which may not seem like a victory, but it is, and the OT/PT are helping. I may almost fall, but I can catch myself again. No failing down a half of flight of stairs-hoorah. My hands no longer rest in a claw shape, and I no longer have trigger fingers in both hands but…
But just because someone carries the challenges life throws at them well doesn’t mean it isn’t heavy. It doesn’t mean that it doesn’t take every breathe they have to keep putting one foot in front of the other, [often] leaving little energy to ask for help.
And I will be honest, in the few moments I have energy right now, I don’t want to spend them asking for help, for raising a white flag of surrender, of being a negative nelly or a debbie downer, by highlighting how bad I am (still) doing or feeling with friends when I see them. I want to enjoy my time with them so I can take that spirit and energy into my soul to help me stumble through another day.
So how am I doing? I am managing. Some days it is easier to manage than others.
I will continue to operate under the belief that “things will be fine” and I will start to feel better, even if it is at the latter end of the 6-month time frame my rheumatologist gave me, and not the early end (3 months) as I originally hoped for though I do hope its sooner than that time frame.
I will continue try to find the humor and absurdity in my situation despite how I feel because as Carrie Fisher said “If my life wasn’t funny, it would just be true, and that is unacceptable.”
So with that, I share a few stories, and that perhaps my friend Jared is right, and physicians need a consent form on their end before they undertake having me for a patient due to the sheer trauma I may cause them. Shrug
To the poor woman from the specialty pharmacy had to enter in all medications, and who thought she was done at 5. I am sorry.
Her: Now that we have entered in all your medication
Me: Um, no there is more
Her: [Shocked] um, ok, please continue.
Me: starts listing again, hitting number 10
Her: Okay, so now that your medication list is out of the way
Me” Ahh, sorry, there is still more, I will let you know when we are done. [I finish and let her know we can move on]
Her: silence [assuming its due to be stunned at the number of drugs I am on given my age]
In case you are wondering this is what my monthly medicine regimen looks like minus a bi-monthly infusion, two as needed medications, one of which is an epi pen, and the actual nebulizer to go with the liquid albuterol. (its 18 in case you are wondering)
Or when the same woman, wanted me to talk to a pharmacist about humira:
Her: Since you have never taken Humira before we need to transfer you to a pharmacist to discuss it
Me: No, there is no need I am an immunologist. I am well aware of the antibody make-up, structure, and likely and rare side effects I need to be on the lookout for.
Her: But we are required, if you say you haven’t had it before
Me: I taught continuing medical education that included this drug, I really don’t need it
Her: It’s our policy
Me: Okay, please go back and mark that I have taken it before
Her: [silence]
Me: Just lie, ok, I give you permission, it would just be a waste of the pharmacists and my time
Or when my rheumatologist finally looked at the slope of my anti-CCP antibody titers (amount of an antibody in your blood) from the time of diagnosis (late September to late November)
Me: Ahh, yes, I sent a photo of my anti-CCP titers to a bunch of scientist and medical friends
Rheumatologist; [looking confused] why?
Me: Because I found it hilarious and ludicrous. Because of course I would go from barely positive to titers that are off the charts in a very short time.
Rheumatologist: [looks at EMR and labs] Holy shit, I didn’t realize
Me: [laughs and shrugs my shoulders]
Or when I did a self-administered latex challenge seeing as the humira SQ injector contains some latex elements and then letting my rheumatologist know the results
Me: So to preface what I am about to tell you, just a reminder, scientists can be really smart, but really stupid. One once gave himself H.Pylori to prove the bacteria caused ulcers
Rheumatologist: [looking concerned] Okay…
Me: So I went and got latex gloves, and did a latex challenge to see if I was still allergic or if a small amount of latex would be fine, and therefore we could do the injection vs infusion. Don’t worry I had my epipen with me. I wore the latex gloves for 30 minutes, no rash or hives (which were my symptoms when I worked in a lab eons ago and developed the allergy), so we should be good.
Rheumatologist: [stunned silence]
Me: I did preface by saying scientists are smart, but also stupid
Rheumatologist: Could you please never do that again?!?
Yeah, I may need to come with a consent form.