Archive for April, 2012
“It really sucks,” I told my mom, fighting back tears.
“I know. It really does,” she replied.
And that is the epitome of what I feel right now. Two days ago, I felt great. I was sure my meds were doing their magic. Today I’m sore, tired, it hurts to walk, my feet are swollen and my stomach is lurching.
So, yeah, it just sucks.
It sucks to be in pain. It sucks not to have control. It sucks to be young with this disease and heading home while all of your friends go to a concert because your feet hurt, you’re tired, and you can’t drink because of the methotrexate.
It sucks to feel sorry for yourself. It sucks to have people feel sorry for you. It sucks to have people not understand. It sucks to never give yourself a break.
I was going to end this post on a light note. To tell you that despite it sucking, it’s not your whole life. That you aren’t your disease and it doesn’t control you. But here’s the thing, I don’t feel like it tonight. I’m tired, I’m achy, I’m lonely, and I want a moment to wallow in self pity.
Tomorrow is a new day, and I’ll be ready with a better outlook and a brighter smile. But tonight, don’t tell me it’s going to be OK. Just take a note from my mom, nod and agree, “Yeah. It really does suck.”
Alright, I have to admit I’ve been a bit of a slacker at updating this blog in real time. By now, I’ve (almost) become a pro at injecting myself with Enbrel, but I wanted to share my experience of my first injection.
OK, so first the good news. After some runaround with my insurance (and contemplating the worst case scenario of having to move back home because of expensive drugs), I got approved for Enbrel at only $30 per month. I was thrilled. I immediately filled my prescription.
Now the not so fun part… I went to the nurse to learn how to inject myself. I was nervous. I hate needles. In fact, one time, when my little sister was about 7 and I was 16, the nurse had me get my flu shot first to show her how “easy” it was. I nearly fainted. (Embarrassing, I know.)
Anyway, the nurse was very sweet. She sat with me and gave me all the information – the injection sites (I’ll go for the thigh, thank you very much, the stomach still freaks me out), warming the Enbrel to room temperature, possible problems and side effects (that part was scary). Then she informed me that I would be giving myself my first injection.
I went a little pale. Yes, I know I was there to learn how to do it, but I thought she would just tell me and then give me the shot. After all, it was my first one! But no, the nurse kindly informed me that “it doesn’t matter how long it takes – and there are no cameras in the room, so if I want to cry, I can cry – but I wouldn’t be leaving without giving myself a shot.”
I gulped. We practiced with a needleless pen. The thing I had the most trouble with was applying the right amount of pressure and not getting startled by the “click” noise. Finally, I felt I was ready (mind you, this was about an hour later). I got the pen ready, held with one hand perpendicular to my thigh, the pressure making the blue tip disappear into my skin. Then with the other hand I pulled the trigger (OK, that’s a little dramatic, I just pressed the blue button). I heard the click, counted to 15, and watched the blue replace the clear liquid in the pen’s window. Then I released, my first shot over, a spot of blood on my thigh.
Yes, it hurt. Yes, it was gross. Yes, I was a bit shaky and white. But I was elated and proud. I had “graduated” from stab school. I had conquered my fear. And hopefully this was the beginning of beating my RA into remission.
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.
Despite not looking like I have a “disease”, RA has certainly done a number on my self esteem. It’s something about knowing that there’s something wrong with you. It’s something about being so hyperaware of your body and all its flaws.
Anyway, given that, I really enjoyed this article: http://www.islandmeetscity.com/2012/01/feel-beautiful-autoimmune-condition/ Hope you do too!
I had one week before my rheumatologist appointment, meaning one week to Google every related illness and RA horror story known to man. Cancer? Lupus? Rheumatoid Arthritis? Something worse? Permanent disability, 10-15 years off your life, systemic disease spreading, scary drugs, high medical bills. I read it all.
It was probably one of the scariest weeks of my life. I cried myself to sleep and came to terms with the worst case scenarios. High medical bills? I was about to turn 29 and loved my apartment, but I could move back home with my parents to save money. Disability? This one gave me shivers, but I could deal. I could work from home some days and adapt as necessary. Not being able to have children? This one sucked. It was a hard one to think about, but I even made peace with perhaps never having children of my own.
On Thursday, one day before my appointment, I got the call from the lab. “We got your results, and based on your blood tests, which show you’ve tested high for Rheumatoid Factor and Anti-CCP, we believe you have Rheumatoid Arthritis.”
“Shit,” I thought. “Um, OK, um…Thanks,” I said. I’d read, I’d mentally prepared myself for a range of diseases and this one wasn’t as bad as some of the possibilities, but it still stung. It still ripped me apart and made me wonder, “Now what?”
Apparently “now what” is spending the night at my parents like a kid and getting all my tears out, so that I wouldn’t cry at my appointment the next day. I was DETERMINED not to cry at the doctor’s. And, guess what? I didn’t. But that appointment’s the topic for another blog.
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.