Posts Tagged ‘Rheumatoid Arthritis’

I had the opportunity to chitchat at length this morning with a certain older gentleman as he waited in my lobby to speak with another employee. He talked of how hard this year had been for him, as he had lost his lady friend to Rheumatoid Arthritis. It had spread to her heart and lungs.

Granted, she was an elderly woman, but still it stuck with me and also made me remember the mother of an online friend I once was close to. She had also succumbed to RA, but died when she was still young, in her thirties or forties. Right around my age.

Death really freaks me out. I don’t want to die, now, or later, or ever, actually.

I can’t think of dying for any length of time or I’ll send myself straight into a panic attack. My throat tightens, my heart races, my head hurts, I feel nauseous and dizzy. If I get caught up in that sort of thought stream, I usually try to get myself to focus on other things, and will put something funny on TV or find someone to talk to about something completely different.

I want to talk honestly now, though, about what it means to me to have this stupid disease.

Usually, it’s just a painful inconvenience that I deal with to some greater or lesser extent every day. I don’t really think about what the future may hold twenty years down the road. Craig and I have both assumed that at some point, I will probably have more limited mobility, but it never really occurs to me to think that the RA could at some point end my life.

Thinking about it now, doesn’t even seem real. It feels at once very personal, and yet impersonal at the same time, as though I’m watching it all from the outside. It really scares me, and yet, I just can’t believe that it could happen to me. I want to cry, I want to scream, I want to curl up in a ball under some soft blankets and just sob.

I don’t want to give up.

I don’t want to give up because I also want to laugh, I want to love, and I want to live. I want to dance and I want to sing. I want to spend quiet times with those I love and I want to be boisterously, obnoxiously happy. Every day.

I will fight. I will not go gentle into that good night. I will kick and scream every step of the way.

I will take my meds. I will eat healthy, and I will exercise, even when it’s a struggle or a temptation to do otherwise. I will treat my body, my vehicle on this earthly plane, as the temple it truly is. I will be good to myself.

I will not give up.


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….to find the ways in which you yourself have altered.
~Nelson Mandela

Wow. So, it’s been awhile. About a year or so, maybe? Have you missed me? *cutegrinwink* I’ve missed you. Really. *nodnod*

It’s time to come back, to dust off my blog and start pouring my heart out again about whatever crosses my mind. I got lazy before I left, the 2007 NaBloPoMo really took a toll here on things at Terminally Cute, though there are some gems there hidden amongst the rubble, I think.

I’m excited to get back to blogging! I’ve spent the last couple days cleaning up the place, changing out some links, and revamping a few things here and there. If you, my dear readers, have anything you’d like to know or questions you’d like to ask or any comments or complaints you’d like to make, just let me know and pop me a comment! I lovelovelove getting input from you guys and it feels so good to know that someone is out there actually reading my schtuff! *g* I’m also still on Myspace, and can be reached through there, just friend me. I do not have a Facebook page: I think Facebook is boring.

My goals for Terminally Cute in 2009 include blogging more consistently. I hope you’ll find posts here that will amuse you, make you laugh, and maybe even make you think about stuff in a different way. I’ll continue to post about my life and all that entails, but I’ll also not forget to dish about the latest celeb trainwrecks or give you my opinions on the latest in film, tv and books. I do love me some pop culture!

Now, how about playing some catch-up? *s*

2008 has been a tough year for me. Health-wise, I have not been at my best, and there were days I thought I’d never feel good again. We decided to change up my RA meds in the spring as the Humira just wasn’t working as well as it used to. I was having more flares and feeling uncomfortable more days than not. My rheumatologist felt that at my young age, there’s no reason we can’t achieve 100% on another med when I’m currently only reaching about 70% of how they’d expect me to feel on Humira. Well, prior to switching me to Remicade, I had to have a routine PPD test to look for signs of tuberculosis, and guess what, folks? Winner, winner, chicken dinner, I’ve got TB.

And as if that wasn’t enough, around the same time I was battling the WORST ear infection ever in the history of ear infections, all thanks to my compromised immune system. Yay. I was literally deaf in my left ear for the better part of a month.

Things did turn around though. My ear infection got better, no thanks to my ex-primary care physician who refused to put me on anything except the lowest dose of oral antibiotics she could prescribe. Thank the Gods she was out of town when I called after a few days of this treatment to complain of continued pain and ooziness. I got referred to the absolute best doctor, and suffice it to say, he is now my primary care physician. He set me up with stronger antibiotics and pain meds, as well as sent me to a specialist who sucked my ear dry with a little ear vaccum thingee and put me on even stronger antibiotics, oral and drops. Ahh, sweet relief!

Anyway, I digress. Back to my TB. They couldn’t start the Remicade because I was positive for TB. Craig and I weren’t exactly sure what TB was, but clearly being positive was not a good thing. We both began to worry. I had to go to the Health Department for treatment. Apparently, that’s the law.

At my first visit, it was explained to me that being positive for TB simply means I carried the TB antibodies, putting me at great risk for coming down with the disease, especially with my weakened immune system. I could have picked up the antibodies anywhere, but as I was negative when they tested me prior to the Humira, Craig and I are blaming my positive status on a uniformed soldier who sat behind us on a flight from Tennesee, coughing his head off the entire way.

I was given a strong antibiotic that I was to take for nine months, and I would have to come in once monthly for check ins and to pick up more meds. I had to stop my RA meds for a short span of time too. Needless to say, I was a hurting puppy.

Three months into the treatment, I was able to start on the Remicade. Remicade differs from Humira in that it is a three hour IV infusion given every eight weeks after the first two infusions which are spaced more closely together, whereas the Humira is an injectible that I would take at home every other week. I was very excited to get going. I just wanted to feel some relief. At this point I was experiencing a lot of pain all the time. My new primary care doctor had taken me off of the Darvocet, which wasn’t doing squat, and put me on a hardcore dose of Vicodin. After four infusions of Remicade, I still felt lousy. After a full body flare, in which every single joint was inflamed, I got put on methylprednisone. Ugh. My RA doc didn’t want to run the risk of doing any further damage to my joints once it became clear to him that it wasn’t working for me, so he took me off the Remicade and got me started pretty quickly on Orencia. Orencia is also an IV infusion, but it’s given once monthly and takes about 1-2 hours.

I just had my third infusion , or maybe my fourth, the Wednesday before Thanksgiving and I’ve got to say I’m feeling pretty okay. *knocks on wood* So far, so good. Of course, I’m unhappy about the weight gain from the pred, which I’m still on, but slowly tapering off. I’ve actually lost 18 lbs so far, just trying to be more conscious of what goes in my mouth and watching my cals. Thanks SparkPeople!!! Exercise up until now has been completely out of the question, but now that I’m getting a little more perky and energetic I’m excited to start bellydancing again! I’ll start classes at The Goddess Hour in the beginning of January, but intend to start going to some cardio-strip classes this month, and maybe even try the Zhumba walk-in classes as well. It really all depends how I feel.

My health has really been the priority and the preoccupation of the entire year. Aside from that, there’s not much to tell.

We just spent a really quiet Thanksgiving, just the hubby and I. We did go out on Black Friday and pick up quite a few dvds and PS3 games, so Craig has been completely absorbed in Call of Duty-World at War as well as NHL ’09.

Here’s the thing with me and videogames. I love videogames, however, once I get bored or stuck, I end up losing interest and so I never finish a game. Ever.

I was bored over the long weekend with Craig so embroiled in Call of Duty, and so I dragged out a game I’ve had for a long while but never opened–Zoo Tycoon. Don’t laugh! It’s really fun. I stayed up every night until the wee hours, just building zoos. I’m totally addicted now.

What’s really hilarious is once you’ve built your zoo and everything’s running smoothly, just throwing a little chaos on into the mix. Picking up a few zoo guests and throwing them in with the Siberian tigers or throwing some penquins in with the polar bears or even just oops! accidently breaking down some cage walls and watching as your animals terrorize the zoo guests into a helterskelter-ish kind of pandemonium. Hearing their little screams and watching as they get tossed about through the air by some big bad predator is just awesome.

Yeah, I know, I have a pretty messed up sense of what’s funny. Good thing I’m not running the country, right? Ah, but that’s a topic for another evening! *g*

Sweet dreams!

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