Tag Archives: medicine

A Rant On My Rheumy’s Nurse

Okay, so… I don’t CALL the doctor’s office very often. I usually just suck it up. I figure I have RA, I may as well accept the fact that I have RA and live with it. Usually, it works out pretty well for me.

I was told at my last infusion that, if I don’t see significant improvement over the following couple weeks, call them. I was told that, if I see anything weirdly different, call them.

So… I noticed stuff and I called them.
MY BAD…

I called and let them know that my feet and hands are still kind of floofy even 2 plus weeks after infusion. I called and let them know that my hands tingle and feel like they are falling asleep. I looked it up on line and was told that I should let them know stuff like that. So I did.

Advice?

Wear carpal tunnel braces on both hands all the time. If it doesn’t help, call them back.

Really?

Okay…
Because I call so often when something is wrong. The last time was two years ago when I got bursitis in my shoulder. I know they get calls all the time because people want to be fixed their way right away. I don’t call. Ever. Unless there is something that seriously needs to be discussed. Labs… tests… something… and then it is almost always returning the call.
I called because I was told to keep her apprised.

And because my hands have felt tingly for three days and I’m having some interesting weirdness.
I guess I will go strap on the two 2X4s and try to drive for a while and see if that takes care of the weirdness. Or maybe not. Since I know it isn’t carpal tunnel (THAT is only a few fingers, not all of both hands) and since Crystal isn’t ABOUT to ask questions or talk to me about anything, I guess I will wait until my next infusion appointment and talk it over with the doctor. That way I don’t actually have to play nice with the nurse and I can talk through what is going on, not leave a voice mail and allow a ditz to interpret.

People didn’t like my Rheumy’s old nurse. He had a very interesting sense of humor (one that irritated a lot of people based on things I read on line), but I was from the part of the country where he was from, too, so I got the humor most of the time. He would have called me back before he helped the Dr make a decision and talked to me about what was going on. He would have asked relevant questions and not made assumptions. I miss him.

Crystal is pleasant enough. Her sense of humor won’t piss anyone off. She has none. At all. All business all the time. It’s her style, and I guess it works for her. I would rather have a little more personable, but that’s just me. I understand that she is the gate keeper and she does a very good job at gate keeping. If you can sit through the 10 minute message before the beep (if this is for refills do this, if it is for records do this… or maybe that, if it is an emergency call 911… this recording will be listened to ever 2 hours and I will get back to you when I can… beep) you can leave some kind of message and hope you make it before you get cut off. I guess whatever you can manage to cram into the gap is sufficient to make it through the gate. Or not. I know know.

So I sit back and wait. I don’t guess too much horrible can happen in 10 days. Obviously not anything worth noting, anyway.

Tomorrow morning… 3 mile run then off to the state fair.

On Bedside Manner

I’ve been struggling with the bedside manner of doctors and their assistants for the last few days.  I’m not sure if that class isn’t required in medical school (you know the class, your patients are humans, they have feelings and you might want to remove your foot from your mouth BEFORE you speak and make everything worse) but I know there are a whole bunch of people who obviously flunked it.

I have a shiny new ENT.  I needed the ENT because without his approval that I don’t have Staph any longer and that it wasn’t MRSA and I’m good before I could get the Orencia infusion I was scheduled for last Tuesday.  I went.  I listened.  I answered all the questions honestly (I think that was my first mistake).  Dr looked me over and promptly told me that my face is deformed and that makes it defective.

Really?

They taught you that in medical school.  Tell your patients that they are deformed?  My new theme song is Hunchback’s Outcast.  Actually… it pretty much was before that… I’ve come to embrace my freakdom and realize that sometimes being an outcast is a really good thing.  It means I UNDERSTAND… but I digress (go figure).

So… one doctor told me I was deformed and defective.  Fail

Called my Rheumy office THREE TIMES to make sure they got the ENT’s report so I could get in to get my infusion just one week late (Like the Rheumy promised when I left without it LAST week).  The PA finally actually CHECKED the fax machine… Friday… oh wow, it’s here.  Sorry… grrrrr… well, you won’t be worked in this coming Tuesday, we are already double booked, and next week doesn’t look too promising either and we already cancelled your next two appointments because you didn’t get your last infusion on time. Sorry.  I will talk to the doctor and find out when we will be able to get around to working you back into the rotation.

It would maybe have come off better if she had SOUNDED like she gave two shits about me getting back in or the fact that the antibiotics the ENT gave me kicked me into the mother of all flairs.

The “gee, sucks to be you” tone sent me into a good thirty minutes of crying in the car (sitting in the parking lot of the boob squisher’s where I made the call to the Rheumy.  I know they have to double book the lady who does infusions.  I knew I was taking my chances of getting in anyway.  But the “I really don’t give a shit” tone just sent me over the edge.  It wasn’t MY fault I didn’t get my infusion. I was there, I was healed from the Staph, I was more than willing to get my infusion.  YOU people sent me away.  I did what I was told.  I’m DOING what I was told. Curb the bitchy attitude and learn that you are the PA not the principle at a Catholic School reprimanding me for being a bad person.

Okay, I understand that I frequently take things badly and that I react to the way things are said.  BUT I know that I’m not the only one.  AND I know that you CAN learn how your words sound.  I know that these people have a LOT of education.  I just wish that people skills were a little higher on the list of must have classes even if your dossier does say that you can part the red sea and turn water into whine (yeah… whine, not wine… bite me… it’s my homonym!).

Gallery

But You’re Too Young

Have you ever heard this?  From family members?  From doctors?  From well-meaning coworkers?  It doesn’t necessarily have to be about RA (or autoimmune disorders in general) but can really be about just about anything.  In my case it is about … Continue reading

Gallery

Cold Front Friday

So… it was 91 degrees Fahrenheit yesterday. That’s about 33 Celsius if anyone  reads this who lives in a place where that is more common (as in ANYWHERE but in the US… ). About 9 last night a cold front went through.  Windy and … Continue reading

Not Quite So Far Into Remission

So, here I sit.  Austensibly, I’m working.  Scripts are running.  I’m keeping an eye on what is running.  I’m getting ready for a move of the current enviornment to the almost latest and not exactly greatest technology that will get us by until a year or so from now.  Knock on wood.
I smell like Tiger Balm.
I’m thinking… contemplating… the fact that I’m probably going to be adjusting my MTX back up from .8 to 1 cc starting next injection.  I’ve been feeling my fingers and toes starting to ache and be stiff (okay, okay, technically “starting” might be a bit of a stretch) more and more.  I’ve been wearing Tiger Balm under my fingerless gloves… I don’t see any extra lumps and bumps.. but I’m feeling like I’m using my fingers and toes more gingerly than I have been of late.  So… I think going back up a little on the meds (as the doctor suggested I might) is my next step.  Probably should call the doctor and let her in on it… but… it is what it is.
I’m kind of sad thinking that I’m not doing any better than I am right now.  I’m going to put myself through some less than exciting loops and jumps tomorrow at soccer practice.  I will probably regret it after Saturday’s game but it’s all wonderful fun and that is a good trade off.
I’m viewing the resent events with mixed feelings.  I have liked the idea of not having to take as much of the chemo poison every week, but I like not aching even more.  So, we adjust. I guess I won’t be finding my hair growing back any time soon.  So, I keep a few bobby pins so I can use them (one at at time) to hold my thimble sized bun… and my BUffs… and I keep thinking… and keep dealing with the brain fog/chemo brain.
The adventure… continues…

World Arthritis Day

So, do you think there is any weird coincidence that on World Arthritis Day I’m taking my little boy to a second opinion Rheumy?  Not sure, but there seems to be some kind of poetic justice in it. I sincerely hope we get some kind of answers this time.  The recent visit to the shrink gives me some hope that answers are possible… so… knock on wood (gently… it is a hand achey kind of day).. .

 

EBMD One of RA’s extra special gifts

SO…. I’ve got RA and Sjogrens and Raynauds.  They kind of all play off on each other.  RA is primary, the other two kind of are just co-existing conditions.  These kind of affect me to one degree or another pretty much every day.

My RA is pretty much currently controlled.  Yeah,I’m on an obscenely expensive cocktail of meds, and I get tummy shots every week but it is a pretty decent trade off at the moment.  It means I’m in reasonably good shape for the most part and I can hide my rather thin hair with my rockin cool Buffs.  Can’t hide the chemo brain so much, but I’m trying to determine the best way to get around that.

OH… and something weirdly new… since my hysterectomy… I’m having hot flashes… which is wicked cool because my feet are freezing (Raynaud’s) and I’m trying to figure out to keep my tootsies warm while mitigating the hot flashes.  In the next couple months that should start to take care of itself.  I’m not supposed to take hormone replacement because it can lead to an increased chance of cancer in a body that is already having an increased chance of cancer (thank you RA) so I think I will keep on taking methotrexate to keep that at bay too… I look like a real goofball walking around in shorts and a tank top and fuzzy warm socks.  I’m SO glad I’ve never cared a whole lot about fashion… I’m a honey badger!

This week I had my annual eye exam with my Ophthalmologist.  I always kind of view this with mixed feelings.  He’s… eccentric.  It’s late summer and he always whistles Christmas songs.  He has an incredibly interesting sense of humor.  He also tells me the ongoing saga of my EBMD.  Epithelial basement membrane dystrophy (EBMD) is this weird ass condition where the cells of your eye get all loose and weird and can stick to your eyelids in the morning when you wake up, your eyes can hurt a lot, you can get way blurry vision…. blah blah blah.

This medical explanation is pretty good if a little… medical…

The corneal epithelium produces and adheres to its underlying basement membrane. Corneal abnormalities associated with map-dot-fingerprint dystrophy are the result of a faulty basement membrane, which is thickened, multilaminar, and misdirected into the epithelium. Deeper epithelial cells that normally migrate to the surface can become trapped. Epithelial cells anterior to aberrant basement membrane may have difficulty forming viable hemidesmosomes and basement membrane complexes, which attach to the underlying stroma, resulting in recurrent erosions. Irregular epithelium centrally can cause decreased vision.

It is exacerbated by dry eyes… so, while it may have existed independent of my RA… it never showed up until… oh… about 3 months before my advanced case of RA was diagnosed.  Coincidence?  Yeah, probably not.

I’ve been kind of trying to dig, but I can’t seem to find anywhere that links or discounts the link between the two even as kind of… well maybe that would make it worse… kind of thing.  One website shows that EBMD might help to diagnose Sjogren’s … so maybe…

So… I’ve been on Restasis for a couple years.  Apparently it isn’t helping a whole lot.  I’m not getting another prescription for that… now… it is a matter of just keeping my eyes as wet as I can.  Tear replacement drops (over the counter) and something that isn’t quite over the counter but what they are telling me is BEHIND the counter (kind of like cold medicine and cigarettes… hmmm) called FreshKote… Three times a day to try to rebuild my tears.  They kind of burn a little, I hope that means they are working… I’m glad that the pharmacy put the prescription through as a real prescription, because it looks like my insurance is going to cover it… which is good because $40 a pop for eye drops makes my brain hurt… but… whatever it takes to keep on keeping on, I guess.

Oh… and in about 2 weeks, I can pick up my shiny new glasses… Squirrel Girl has given them her stamp of approval… so… 😉 maybe they will be an improvement.