Sundays for me have always served as relaxing, lazy days when I could sleep in, fix a big breakfast with a hot mug of coffee and hang about, maybe watching a movie or reading a good book.
That's exactly what I did this morning, and plan to do for the rest of the day, but with a few delightful additions. Accompanying that big breakfast are my three daily morning pills: hydroxychloroquine (200mgs), calcium (600mg) and magnesium (250mg- to help with my increasingly frequent migraines). I will also take the hydroxychloroquine again at night, along with another calcium, when I eat dinner.
I've been on the hydroxychloroquine, aka plaquenil, (originally used to protect against malaria, but it works on RA- who knew?) since November. I think it helps now, but it was pretty slow acting at first, and wasn't enough of a match for the mighty RA, so in addition to tossing back the pills this morning, I'm getting ready to shoot up again for the second time this week. I use a drug called eternacept, or enbrel, and I inject 25mg twice a week. When I first began the shots, I used the more typical 50 mg shot once a week, but I got insane, children-would-run-screaming-from-me-if-they-saw-this reactions at the injection site. They looked like massive alien welts that had attached themselves to my thigh in order to multiply and take over the world. Definitely a man-deterrent, too (though I am currently on a self-imposed dating strike until conditions improve), and the idea of putting on a bikini in public became even more dreadful than usual.
When I visited my awesome sister and soon-to-be- brother-in-law in February at their home in San Francisco, they got to see one first hand, and it was literally the size of my hand. And repulsive. So about a month ago, my rheumatologist switched me to the 25mg shots, which are sooooo much better, and they hurt less, too.
Taking the pills isn't so bad, though sometimes it's a little awkward when I'm out to dinner with people from work and have to toss it back-though I've gotten pretty slick at doing this without anyone being the wiser. When I first had to start injecting myself, I was terrified. My brother assured me that it wasn't bad (he's had EMT training and is basically superman, so a little tiny needle is no big thing to him). I wasn't so sure about that, and masked my fear by making jokes that I was going to bring back the heroin chic look and bleach my hair blond, wear ripped up stockings all the time and smeared red lipstick. (I didn't, FYI).
When I finally got my shots- it took a solid month to coax my insurance company into giving me their approval (meanwhile, I WAS IN CONSTANT PAIN, assholes), I made my appointment with the nurse at Beth Israel (where all the members of my medical supersquad work) to learn how to give them to myself. The nurse, Lorraine Whitson, was truly remarkable and so kind and patient with me, and I will forever be grateful for that, because having to stick a needle into your flesh for the first time is completely intimidating and scary. There's no getting it wrong. She let me practice on a rubber ball with a practice needle over and over again until I felt confident to do it to my leg.
And it was kind of like when I got my tattoo in college; it hurt like HELL (not the needle so much, unlike the tattoo, but actually injecting the medicine, which surprised me), but then my body released a flood of happy little adrenaline streams, and I felt all pumped up like a rock star. I felt that way all day and celebrated by going out for drinks that night in white go go boots and breaking into an impromptu concert U2-style. Well, I'm exaggerating a bit, but you get the point.
Now, as my brother predicted, it's really no big thing, and I secretly like it. It's my little Nurse Nancy moment twice a week, and what I like most of all is the feeling that I am doing something to make myself better.
Migraines. Argh, hate them. You might try massage. It seems to work for me, especially when combined with a bit of valium, heroine, ecstasy and scotch. Who knew? But seriously, the massages have helped!
Posted by: Jeff Shattuck | June 15, 2008 at 03:09 PM
Whoa--lookie what I found!! You go, girl! This is an amazing chronicle that will undoubtedly reach lots of people who need it badly. My advice to anyone who faces adversity of any kind: stay in the moment; handle one day at a time. And SEIZE THE DAY!!! I love you!
Posted by: mom | June 15, 2008 at 04:38 PM
Jeff- I might try that, esp. the valium and scotch! haha. I definitely don't have them as often as you do, but I do seem to be getting them more frenquently post-diagnosis. thanks for the tips.
Mom-thanks! I hope it will reach a lot of people.
Posted by: SGRA | June 15, 2008 at 06:05 PM
Hi there girl you came around by a angels wing sweeping me to reality and acceptance of a world I now live in. I am accepting MCTD/UCTD diagnosis with a little laugh in there and less cry. Thank you for that,helping me see differently. I was scared and still am scared at times but look forward to your site. We have no support groups here.
Posted by: lorna | November 26, 2008 at 12:07 AM
Hi Lorna,
Glad that you found me! For me, figuring how to see some kind of humor, however small it may be, in all of this has really helped, and I hope it can help you a little, too. I'm sorry there are no support groups by you, but there are some really great online support communities, so welcome and come on in!
Posted by: Sara | November 26, 2008 at 09:02 PM
I realize I'm a little late to this, but as a 23 year old single girl diagnosed with RA a year ago, this site is a godsend! So obviously I had to read all of the older posts. Thanks for sharing your story so candidly Sara!
Posted by: Meghan | July 31, 2010 at 09:14 PM
Meghan- So glad you found it and that it can help a little. It's really great hearing from people- especially on some of these earlier posts!
Take care-
Posted by: sara | July 31, 2010 at 09:53 PM
Hi, there:
Thanks for your email via FB. This entry (June 15, 2008) seems to be the first one available. Do you have the earlier entries somewhere else Would love to read through your early stages and diagnosis era. :)
I look forward to catching up to the current entry.
Thanks!
Posted by: Cindy Martin | December 30, 2010 at 03:33 PM
Hi Cindy,
If you go to the table of contents/index link above (or here: http://singlegalsguidetora.typepad.com/the_single_gals_guide_to_/table-of-contents.html), you can see all my posts from the early days by subject. The first category is 'On the beginning' or you can click on the 'Monthly Archive' at the top and start at the very beginning. Good luck, and I hope this helps. One thing i have learned by far is that there are tons of us out there, so we aren't alone!
Posted by: sara | December 30, 2010 at 04:32 PM