Posts Tagged Symptoms
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!
I finally had my appointment with my rheumatologist today after a week of going through potential outcomes. I brought my mom with me to have another pair of ears and the support.
The diagnosis was immediate: “You have rheumatoid arthritis.”
I can’t say it didn’t suck to hear it like that. I’d expected a little bit of mystery, deliberation, maybe a “you’re OK.” But I also can’t say I was surprised. I nodded as he went over the reasons why he was sure – positive for rheumatoid factor and anti CCP, bone erosions, clear inflammation.
Then he asked questions that shed a light on ALL of the symptoms I’d been feeling but hadn’t linked to my “sports injury.” Have I been tired? Down? Depressed? Experienced insomnia? Anxiety? Stomach issues? Yes. Yes. Yes. Yes, yes and yes. Majorly. Dry eyes and mouth? No (something I don’t have, yeah!).
I walked away from the appointment with a diagnosis, a plan and an odd sense of hope and relief. My rheumy believes we can get this into “remission” in six months. My rheumy says I’ll be able to have a family in the future if I choose to. My rheumy says that we’ll minimize permanent damages. That there are a lot of good drug options.
So, of course I left the appointment sad, with a million additional questions and overwhelmed at my new drug plan – A cancer drug? Giving myself injectables? But I was also relieved to be doing something and to have a name to put toward everything I’d been feeling.
I promptly filled my prescription for methotrexate, prednisone and folic acid and started the process for getting insurance approval for Enbrel.
I went to happy hour with my mom and close friend, nervously going over the prescription info and bringing my friend up-to-date.
And then, with a ton of trepidation (Is this severe of a treatment really necessary? What about the side effects? Will it make a difference?), I popped those six itty-bitty MTX pills and began my new life. A new life on drugs, but also a new life on the pathway to some sort of relief and recovery.
I’m not exactly sure what my final straw was. My right foot – my “sports injury” – had flared up again. I’d spent an extremely frustrating ski weekend in extreme pain, hobbling up and down stairs, my feet so stiff they wouldn’t walk properly. I even told my family, “I feel like I have arthritis. Why am I such a gimp right now?” The response of course was, “You don’t have arthritis. You’re too young to have arthritis.”
So I popped some Advil, stuffed my angry feet into ski boots and carried on. But after that weekend I finally made the call, I booked an appointment with an podiatrist, sure she would find a stress fracture.
She remarked at my swollen feet and asked me which one hurt. “The right one,” I said. “Well, actually both.” I knew it was odd, but I explained to her my theory of how I must run funny and would hurt one foot and then over compensate with the other, causing both to be swollen and painful.
So the doctor took an X-Ray of my right foot. I sighed in relief as I waited for the results. Maybe she would tell me to stop working out and I’d be in a boot for a month, but at least I would finally be healed. Then I could get on with my life and stop dealing with this stupid pain.
Disappointed is the word I would have to use to describe my emotions when my doctor told me, “Good news! You don’t have a stress fracture!”
I was really hoping for an injury. One I could stick a cast on and heal and get better.
My disappointment turned into confusion when she proceeded to show me the X-Ray of my stress fracture-free foot. An X-Ray that showed that bone in my little toe had eroded. She explained, as lightheartedly as possible, that this could be a sign of lupus or Rheumatoid Arthritis and that I should get blood work done and make a follow-up appointment with a rheumatologist.
Excuse me? Did she not hear me? I was just there for a sports injury. Something I did running. Was this really necessary?
But more than denial, I honestly have to say I was scared. I was scared because deep down I knew that something wasn’t right, I just wasn’t sure what was wrong.
I went to a work networking event that night and told my partner and friend about the trip to the doctor. I heard my voice shake a little as I told him what they were running lab tests for. That’s when I understood how afraid I was. That’s when it felt real. My eyes welled up, and he gave me a hug, you’ll be fine. I nodded, while internally making a list of all the things I would have to Google when I got home.
Add Seasonal Affective Disorder to my list of self-diagnosed, but totally – in my mind, at least – manageable issues (carpal tunnel syndrome, sports injuries, poor footwear choices, non-orthopedic office chairs).
Starting in mid-December, post half-marathon, I suddenly found myself in a state of sadness and fatigue. It was hard to drag myself out of bed. I couldn’t sleep at night – not because of painful wrists, just an undefined worry and discomfort. I got overwhelmed and tired in social situations easily. I was prone to bursting into tears (and I’m not much of a crier). My stomach had been thrown for a loop too. I lost my appetite and, with it, weight. Food didn’t seem to agree with me anymore, but I didn’t even want it (for a total foodie, this was just crazy!).
The only time I seemed to feel normal was after a couple cocktails, but soon that didn’t help either. Better than a cocktail was my bed.
I told myself I was just in a “funk” and maybe had a case of the winter blues. At any rate, I wasn’t myself and I wasn’t much fun to be around. I felt like my life had just crashed, and was crushing me under the weight of the rubble.
A pretty low point was the night I threw a party, but couldn’t seem to even lift my body up enough to sit. I finally guiltily snuck away and spent the night fast asleep in my friend’s bed, exhausted and anti-social.
In hindsight I think my body was doing everything in it’s power to tell me that things were not OK, to get me to finally listen. I’m curious how many people feel this flu-like depressive exhaustion with their RA. It’s something you don’t really think of as being related, but it is a powerful, powerful, destructive thing. It really did a number on my self-esteem to feel so low (energy and emotion wise), something I am still trying to rebuild two months later.
This post could also be titled, “When Self Delusion Makes You a Dumbass,” because, honestly, why had I not gone to the doctor?
But, there I was, training for a half marathon, my feet occasionally swelling up in pain. Being confused because my “sports injury” would magically switch sides.
Here’s the thing, in November, training for my half marathon, I felt powerful. I felt strong. I was running, doing boot camps, doing yoga, trying acro yoga, writing a book and making progress at work. I was a 28-year-old superwoman, elated that I had hit my stride.
The first weekend in December was the weekend of my half, and I rocked it. I made a decent time and felt great doing it. Afterwards, trudging back to the hotel, my swollen, sore feet were screaming. The half was a sort of turning point for me because I couldn’t just ignore the pain that seemed to flare up anymore. On bad days I started complaining to people who would listen. The general consensus was a torn ligament or a stress fracture. Some weeks it was fine, other times people would ask me why I was limping.
Still, STILL, I didn’t get it checked out. I barely even stopped working out even though I figured maybe a little rest would just heal it.
It’s amazing the pain you can tolerate when you think you’re fine. Once my wrists felt better, I simply ignored them. Occasionally they would feel sore, but it wasn’t too bad, it wasn’t waking me up at night.
Needless to say, I didn’t remain pain free for long. I began feeling pain in my feet. The bottom of my feet would just be sore. I blamed this on bad shoes (I’m cheap AND I like heals, a deadly combo!) and working out. It wasn’t so bad anyway. Plus, I was planning a mega-vacation to Europe, so I was blissfully distracted.Looking back now, I’d say I had a major flare up during my first week in Europe. At the time, I thought I was walking too much and had brought the wrong shoes. Looking back, I can feel more empathetic and forgiving toward myself about how painful it was to walk around. At the time, I bought gel inserts and foot cream and told myself to “suck it up.”
I spent a week walking around with painful, swollen feet. The days we walked a lot were bad. I had to take breaks, which was so unlike me that I would beat myself up over it. Every chair or bench I saw, I’d take a break (the museums in Russia are huge-I thought I’d never make it through the Hermitage!). The days we were off our feet, I felt much better. Luckily, I was distracted by Russia, with all its charm and beauty. And, mysteriously, by the second day in Greece, my feet were much better. I felt normal (of course, I was rapidly developing a new pain threshold and standard of normal).I got back from Turkey rejuvenated, energetic and ready to start training for a half marathon.