We Don't Know, Part 2

When I finally got in to see my PCP my nerves were frazzled. I'd spent the previous 3 days in pain and in fear. On the 2nd day of waiting, my hips started to hurt and that's when I really lost it. I cried to my husband pretty much daily. Most of the tears were for the unknown. It's really hard waiting to find out what's going on. My PCP is amazing and saw me immediately the day of the appointment. Right away he said "Let's run a bunch of tests to rule things out, it's either an allergic reaction or a joint condition." I tearfully nodded my head while he went about his physical exam. He made a follow-up appointment for me in 1 week (he thankfully rushed the test results) and re-filled my pain meds- at this point he took me off of steroids because he didn't want to overmedicate me without knowing what was going on.


Let me tell you, 1 week is a LONG time when you're awaiting test results. I did a lot of research into RA during that week and scared myself like no other! I've found that medical forums come in extremes, the really bad or the really good. Hearing stories of mobility issues, going on disability, joint replacements, chemotherapy (which at the time boggled my mind!), and post-partum flares had me terrified. Once you go down the rabbit hole of Google it's hard to stop. This was a very scary time. The uncertainty one often experiences in situations like this is often worst than the reality. As humans we tend to be really good at worst-case scenarios, it can definitely be a slippery slope.


Once I got in to see my PCP again he got straight to the point (just how I like my doctors). "It's not an allergy and it's not RA. It might be Lupus, I don't know. I'm sending you to a Rheumatologist." Not RA?! Lupus?! This news really threw me for a loop. Lupus had never crossed my mind. Lupus is a disease I have very not-so-good ties to. I saw my mom's cousin (by marriage) pass away from Lupus complications and my husband's aunt also passed away from Lupus complications. It could NOT be Lupus! The fear at that point sunk deep into my stomach. I managed to keep it together until I was in my car and then I broke down. I called by husband sobbing, I was so scared. I even tear up now thinking about it.


Long story short (well, shorter...), my PCP pulled strings and got me to see the Rheumatologist just 1 week later! I didn't realize at the time how lucky I was to have such an advocate in my PCP. A lot of people have to wait weeks, even months, to get specialty follow-up. My Rheumatologist was thankfully much like my PCP in terms of communication, no sugar coating and straight-forward. "You have RA, I don't have a doubt. Even though you don't test positive for the factor, I know it's RA." Her self-assuredness was comforting, even if the news was unwelcome. I know for some people this type of communication style might be off-putting, but for me it's just right. I don't need a warm provider, I need a confident one. She sent me off for more intensive lab work and made a follow-up for me in 3 days. Sure enough, upon follow-up she confirmed the diagnosis. My sedimentation rate, c-reactive protein, and anti-CCP all indicated RA.


My Rheumatologist was initially hopeful that I would achieve full remission. She stated that most people don't get diagnosed or treated for RA for years. Due to my acute onset (for the most part, although I had a few earlier signs), she wanted to be aggressive in treatment. According to her (and a lot of great research), early aggressive treatment plans can lead to remission in a lot of patients. Particularly for those with symptoms caught really early on. So, Methotrexate and Enbrel were prescribed that day, along with Prednisone.


Well....it turns out I did not achieve remission. In the past year, I've had to stop Methotrexate due to elevated liver enzymes, Enbrel did not alleviate any symptoms, nor did Humira (Humira only gave me severe acne all across my chest and back). I'm currently on Orencia and *fingers crossed* seem to be doing a bit better. I constantly flare (2-3x/month), I'm on FMLA at work, and everyday something hurts. Since Feb 2015 (when I was diagnosed) I've had 3 pain-free days. Three!  Otherwise, my "normal" pain level is 3/10, and flares shoot me up to a 8-9/10. 


I know I am incredibly lucky to have been diagnosed and treated so early. The horror stories I hear about delayed diagnoses, mis-diagnoses, and just awful doctors who are dismissive of symptoms make me grateful for my providers. Still, it sucks. It totally and completely sucks. This is just my story. One of many unfortunately. My goal is to use this space so that I can make sense of what often feels like a whirlwind disorder. I don't have any answers, just my perception of my disease. I hope this little journey of mine can help someone else with theirs.