Date Night

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I bet that caught your attention.  No, not that kind of date.  I will forever remain coy on that subject when it comes to the trusty old Internet.  

But, I did have an all day date Saturday….with my immune system.  Actually, it was a three way date- I brought my joints along too.

Why?  Because I need my immune system to start putting out.  Or rather, if you want to get technical about it, stop putting out.  Or maybe it just needs to put out correctly?!?  Yes, that’s it.  I need to be in an exclusive relationship with my frigging immune system.  Right now, I feel like it’s whoring itself out all around town. So I don’t think that’s too much to ask.  Keep it in your pants, immune system.  GEEZ.

After sleeping in late, “we” got up and enjoyed my new specialty.  An egg white frittata with spinach, tomatoes, and feta cheese.  I was psyched- I’m trying to learn how to cook and I made it all by myself.  And people liked it.  AND NOBODY DIED.  Ok, so just me but still, it’s a start.

Then “we” went to get a massage.  I have a funny story for you here, which actually served as inspiration for calling this day of relaxation a “date.”  I’ve been going to the same place since July- generally going 3 times a month.  It is glorious.  So when I called to schedule my appointment, a new girl answered.  I asked for Saturday morning with the same person I always go to and said my name.  The appointment was confirmed and that was (I thought ) the end of the story. Until I get there Saturday morning.  The same new girl checked me in and handed me the clipboard of paperwork for new patients.  I looked at her, confused, and said “I’ve been going here for months- do I need to do new paperwork?”  She looked at me and said “No, that’s for (my last name).  I don’t think he’s been here before.”  It took a second for it to sink in what had happened.  I started to say “who the heck is….” when it hit me and I laughed so hard that I couldn’t breath.  Folks, she somehow took my first name and last name and booked me a couples massage based off of that.  

Niiiicccceeee.

So, the massage was fantastic (as usual) and next “we” went to the gym.  I showed the joints and the immune system who’s boss by doing 20 minutes of elliptical and then treated them to 15 minutes in the hot tub and 10 minutes in the steam room.  (May I add in here what an experience my gym is- a guy I know calls the men’s locker room at the same gym “the gauntlet” which I never understood until recently.  The reason he calls it the gauntlet holds true in the ladies locker room- everybody walks around naked. And not just “I’m changing my clothes and had nothing on for a split second” but full fledged strutting in birthday suits. WEIRD.) A fruit smoothie later (they called it organic with immune boosting additives but I’m doubtful) and “we” head back to my place to shower and clean up.  

Originally the plan was to end the date here because I had other plans with other folks but “we” were having so much fun that “we” decided to party well into the night together.  Ok, so my plans got shot to heck and I ended up curling up on the couch and watching movies.

It was lovely.

In other news, I finally got in with the rheumatologist.  I’m kinda frustrated.  Instead of presenting new options like I’d asked for , he increased dosages of methotrexate and Humira and told me to discontinue sulfasalazine. I go back in 3 weeks for an injection into the joint as well as a joint aspiration if this doesn’t help.  Can you feel my excitement???  In the confusing-shocking but only to me-not sure what to think of this news, my bloodwork came back (drumroll please) negative for RF.  Hmmmmm.  I’ve always been positive.  So I’m not sure what to think about being negative.  While I can find all sorts of articles explaining patients going from seronegative to seropositive, I cannot find anything on the reverse.  Which makes me feel like a freak of nature, yet again.  He shrugged it off like it was no big deal.  Actually, his exact words were “You still have it- your CCP is elevated and you have symptoms.”  But still….anyone else experience this?

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10 responses »

  1. Amanda, I have always had a negative RF but an elevated CCP and of course, the symptoms.

    Sounds like an interesting date night there. My date nights with my immune system usually more sick feeling symptoms (malaise and fatigue) than the pain itself. All the same, not a pleasant date night.

  2. Oh, there have been lots of sick feelings lately. I’m trying to get them under control! With the RF, I know lots of people who are neg the whole time but can’t find any info on what going from positive to neg may mean.I’m sure that means that it doesn’t mean anything but still, I’m curious!

  3. Funny post, AJ. Heheh… and yes, I’ve been RF positive, then RF negative, then back to RF positive on the next test. My doc never raised an eyebrow, either. The closest explanation I ever heard for it was, “you can have RA and have a negative result for RF.” This was said as the doc examined an obviously hot, swollen, painful knee.

    I hope your joints will start putting out for you VERY soon, and I’m wincing in empathy as you contemplate the joys of joint injections and aspirations. Hang in there.

  4. Yes on the RF question. It’s weird, because it’s not SUPPOSED to work this way, but my RF went down when the RA got under better control. I came into my first rheumy appointment with an RF of 468. For the first year of having RA, I didn’t take anything except prednisone because I was pregnant – my RF went up and down but still stayed basically high – never went lower than about 100. After my baby was born and I started Remicade and MTX, it went down into the normal range and has been there ever since. Recently, I’ve been flaring a lot, and my RF has stayed down but my anti-CCP has gone up. I am baffled.

    Good luck on getting your immune system to put out (or not put out) after dates!

  5. Hi Amanda, I suspect the most likely explanation is the test was just plain wrong – someone in the lab muddled your data with someone else’s or just did the test wrong. Next time it’ll come back positive, I imagine. It happens the other way around – my brother was told he was positive for cancer again after having had an all clear and just going back for routine tests for a few years. He wasn’t … someone screwed up. You can imagine how much fun that was for him and all of the family!

  6. Oops. Meant to link the Sept 14th article. Sorry; scroll down on the page that shows up from the above link to get to the article titled Decreasing Levels of IgM-RF and Anti-CCP with RA Treatment. The comments were pretty interesting, too.

  7. Amanda – It sounds like you have begun a great plan of action to take some stress off of you and hence, off of your joints. Good job!

    I have to admit – ever since I stopped stressing about how to feel well enough to get back to work, and just simply took work off the table for now, I have felt a lot better. The docs think it is the Simponi, but I think it is a definite combo. of the Simponi and reduced stress. Stress has always been the number one trigger for me, more so than any dietary trigger. Second would be lack of sleep. So make sure you are getting plenty of sleep!!!

    Here’s to another date soon, with a hunky mysterious, intelligent man, rather than your immune system. LOL! ;)

  8. Amanda: I left a response in my latest post on your Q re: shoulder injections. I’ve had hips, elbows, shoulders, and knees injected. And since the underlying foundation of your blog is unblemished honesty, I will tell you that I thought they all hurt like the blazes. But when they work, they’re like a miracle. The shots don’t take that long to give so if you have to have one, just take long slow breaths and think about how much better you’ll feel. Seriously. Good luck with everything. (Really weird about going from +R to -R. I’m -R factor, but I’ve always been there.)

  9. OOOH yeah, Carla’s not wrong about the hurting like the blazes, but BOY does it work well!! (Or at least it did for me!)

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