Might have the clues for diagnosis now!

It looks like I’m on my way for an official diagnosis of rheumatoid arthritis.  (though I suppose the new news doesn’t knock out Sjogren’s, which is one of the other contenders, though my rheum thinks RA is more likely)

Today I had a musculoskeletal ultrasound.  I had worried that this would be very painful, as I remember how much pressure it took to do abdominal ultrasounds.  Fortunately, musculoskeletal ultrasounds require much, much less pressure.  Unfortunately, it was still enough to be quite uncomfortable.  My hands are still crankier than normal, 4 hours later.

The ultrasound determined that I had inflammation in all of the joints they looked at, though they could only see ‘flow’ in one of them.  ‘Flow’, in a musculoskeletal ultrasound, helps to make certain that you’re looking at active inflammation rather than scar tissue.  However, as all of my swelling has happened since March, they’re willing to accept that it’s extremely unlikely that I have scarring.  As far as the exam went, there was one piece of good news for me: no bone degradation/damage anywhere.  That’s a big deal with RA, as it is known for eventually damaging and deforming bones and joints if it is left unchecked.

I’m trying to think of this as a good thing.  The proof of inflammation, which I could easily see but my rheum wasn’t as certain about, should mean more effective treatment.  I desperately need this under better control – I’ve missed an intolerable number of classes, and if I continue at this rate, at least one of my professors will fail me for absences from class.  (Yeah, as an undergrad you can get a waiver of that sort of thing, but the American Bar Association has rules that have stood up to challenge in courts about attendance, and all schools that are ABA certified have to follow those rules)  And oh, the pain…the idea of being free of this pain seems almost like a dream.  Not to mention, my fiance and I want to get an engagement ring, and my fingers have been too swollen to make sure it fits for AGES now!

Anyhow, sorry for the silence lately.  This probably-RA has been causing me a lot of pain and keeping me lying down on my side, and I haven’t figured out a good way to use my computer from that position so I haven’t been on it much.

In other news, until I see my rheum (3 weeks from now), I’m switching back to one of the meds I tried and went on from.  Salsalate upset my stomach pretty badly, but it worked really well.  That’s better than what I’m dealing with now – Mobic isn’t working well and it’s giving me badly disrupted sleep with hyper-vivid dreams.

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Some listening would be good.

Anyone who has any degree of PTSD will tell you this: you tell people you have it and at least half of the time they don’t take you seriously.  The same goes for phobias.

When I was 17, I got a twist in my intestines.  It sent me into a high fever (around 105), dehydrated me, and generally made me very ill.  I was somewhat delerious.  When they sent me to the ER, the ER nurse couldn’t get a line in.  He blew the vein on the back of my left hand so badly that the entire back of my hand was bruised, and the bruising showed through to my palm.  Then he tried to get one in my right thumb, and couldn’t find it, so he was sawing around and ripping up the back of my thumb trying to find it.  He gave up and when someone else came to try to put an IV in, I was curled up on the corner of the gurney screaming “no more”, with my fist cocked back to hit someone if they tried.  (They did a lot of things that night that honestly register as torturing me, like putting in a catheter and filling my bladder painfully, then doing an ultrasound on my very tender belly.)

Thursday night, we went into the ER because I had horrific abdominal pain.  As usual, they had trouble getting an IV into me, so they ended up putting the smaller size one into my hands after 3 failed attempts to put bigger ones in other places.

They wanted to do a CT of my abdomen with contrast, which requires the regular size IV because they flood the contrast into your body pretty fast.  After another several failed attempts (we were up to 7 at this point).  I told them that I was going to lose my shit and start freaking out if they tried to stick me again – I had done as much being poked as I was capable of without freaking out.  I asked them to sedate me before they tried again.

They said oh, we’ll do the next one guided by ultrasound.  It will be fast and easy.

I did, indeed, lose it.  Screaming and sobbing and shaking uncontrollably while they keep poking me and trying to get the IV in.  The guy doing the IV kept asking me if it hurt or if I was scared, and the answer was both, damn it!  I was freaking out badly enough that it was making everything hurt worse.

Eventually they did sedate me, and once it kicked in, we were able to get an IV in and I was able to stop freaking out so badly.

What I want to know is this:  why the hell couldn’t we have STARTED with that before the ultrasound-guided IV?  I told them I needed it.  If they had sedated me, it would have been a nothing-doing procedure that wouldn’t have triggered me.

Instead, I’ve now been triggered badly enough that they’re going to have to sedate me to get a FIRST stab at me next time.  It took me a decade to get to the point where I could accept IVs without getting worked up, and now…now I feel like I’m back to square one.

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