Archive for September, 2012
I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
Maybe this is the answer to my last blogpost on the woes of self injection. Replacing needles with lasers and a puff of air? Sign me up!!
I’ve been doing so well on my Enbrel injections that I started thinking I totally had the hang of it.
Last night, I stuck to the routine. I took my shot out to let it warm up, I tried to relax. I iced my right thigh and sterilized the chosen injection spot. I checked the expiration date and looked to make sure the liquid was clear and the little bubble was acting like it was supposed to. I took the lid off the pen and pressed it to my thigh.
And, boom. My heart starts racing and my thumb REFUSES to press the blue button to release the needle. What the hell? I’ve done this a bunch of times now. I know how much it hurts (yeah, sometimes it hurts quite a bit, but I know I’m able to deal with it).
I actually had to talk myself down from a full on panic attack. And then, of course, I got frustrated at myself for not being able to do something so simple. I put the pen down and paced my apartment, trying to calm my nerves.
Finally, I was ready to try again. Pen on thigh, my thumb pushed the button. NOTHING. I hate when this happens. I mentally prepare for the shot, and you push the button and for some reason it doesn’t release the needle. Ugh.
It took a couple more tries to actually get it. Re-positioning the needle, trying the button… When it finally did go, of course I wasn’t prepared, so I was a little surprised and probably pushed on the needle harder than I should have. End result: painful injection (it stung more than normal, bled a bit, and I wouldn’t be surprised if it bruises), mentally exhausting, and I’m dreading next week.
I don’t want to discourage anyone. There is a part of me that knows the weekly injections are an easy task that I’ve already mastered. I shouldn’t make it such a big deal.
Anyone have any tips for getting over the mental block of self-injecting? Or tips on making the experience less painful? Thanks to all of you! ❤
I think that authoring this blog has really helped me open up about my RA. A lot (not all yet, but maybe I’ll get there) of the shame and nerves that came with “admitting” to someone that I had this disease have faded.
I’ve had two recent experiences telling a date about my RA. The first time I’d ever told anyone about my RA aside from close friends and family and doctors was on my second date with a very sweet guy (maybe a little on the early sign, but I don’t think there are hard and fast rulles with this). We were at a pretty nice, new restaurant, where, being gluten and dairy free, I couldn’t eat half the menu. I asked the waiter about some gluten-free options and happily chose a modified scallops dish.
My date kept inquiring about my diet, giving me ample space to drop the RA bomb. “Are you allergic?” No, not exactly. “Are you trying to lose weight?” What? No…
Finally, toward the end of dinner, I brought it up. The timing was probably a bit odd, given all the opportunities he’d presented me with before. At any rate, I said something along the lines of, “Since you were asking earlier, the reason I’m on this diet is because I was diagnosed with Rheumatoid Arthritis in March.”
Ka-boom. The RA bomb had landed.
I went on to explain that the elimination diet helps you determine if an allergy or sensitivity to a certain food is making your symptoms worse.
He just nodded, asked how I was feeling. Then he asked if it was hard to do physical things, and immediately apologized for his invasive question. I didn’t mind it though, it’s a fair question. I hadn’t heard of RA before my diagnosis, but if I had, it would have probably surrounded the disability/disfigurement horror stories of the disease.
So I brushed it off, saying, “No, it’s really under control with the meds. I barely notice it.” Yes, that’s kind of a lie. It’s not totally under control and I do notice, in fact, I’m probably hyper aware of all symptoms.
I figured that if we kept hanging out, it would inevitably come back up.
I’m happy to report that the world didn’t implode. He didn’t run away and never call again. He didn’t treat me like a victim. It just was a fact.
The second time was similar, but the window wasn’t diet, it was drinking. Since I’m on methotrexate, which is hard on your liver, I’m not drinking much (my doc says 4-5 drinks per week – no, not all at once! – is fine). So we were running, and he was talking about wanting to not have any alcohol for 30 days, so I talked about how I really wasn’t drinking much either.
Then, ka-boom! The RA bomb once again landed.
He asked questions about my treatment and I answered honestly, and hopefully without any trace of shame. I even told him that my symptoms aren’t totally under control, but that clinical remission is my goal and hopefully where I’m headed.
Again, he didn’t run screaming for the hills. He did call me again.
Lesson learned. Your honesty and courage allows other people to react in a similarly courageous, empathetic way. So, no more shame. Thank you blogosphere for allowing me to reach this point. From here on out, I’m owning it. I’m no longer admitting to a shameful thing, I’m informing someone about a part of my life.
I have recently discovered non-dairy yogurt made from almonds or coconut milk, and I have been loving it. Before trying out being non-dairy, I used to pretty much have a yogurt every morning. Not only is this yogurt yummy, it has the live cultures (those good for you bacteria) of regular yogurt. Yay!