Friday, September 01, 2017

The appointment...

The GP appointment was another stellar one with regard to productivity, though my wait was long and we spent more time than I intended. Well, that leaves me room for progress.  She gives me extended, comprehensive appointments.  I want to honor that and kept to my time slot at every appointment.

For one, the appointment was long because I had a long list. Part way through, I thought I should ditch the last three items, but I ended up going over them as well. She is such a GOOD doctor.  So, I think that I should keep my lists a bit shorter before I arrive.  However, we were so darn productive last month that I had a lot of reporting to do about the medication changes and about the new thing the integrative medicine specialist is having me take.  Then I had somethings I wanted to see if she could help me address.

I think I should name her Dr. Full-of-Ideas. She is always thinking about what I bring to her, even afterward in follow-up calls or messages.  Today, by the time I arrived home, I had a MyChart message from her with further thoughts and links to her suggestions.

One of the things on my list was the terrible pudendal neuralgia flare I had yesterday.  I told her my theory about why the flare was so bad when the higher dose of baclofen has been so helpful: moisture.  You see, the flares are all associated with the movement in my intestines, and, to be blunt, what moved yesterday was a rock.  I've worked really, really, really hard on getting my sluggish intestines to move and to produce moist waste.  Okay ... to be super real ... I dream of diarrhea these days.  Every time I get a warning about it as a side effect from a medical professional, I secretly hope that will actually happen.  But no.  And if you've never had sluggish innards, from start to finish those innards can make your life fairly miserable.  Our bodies are designed for movement.

I am not a water person, but I have been trying.  I drink 64 ounces a day, but I know that folk with dysautonomia often drink far, far more.  And folk with Sjögren's.  But she wanted me to increase the colace and perhaps the psyllium husk first.  I guess the best way of saying that she said to focus on how I absorb moisture rather than adding more water.  I could get up with that.  Plus, when I miss colace, I can really tell a difference.  

What I like is how she thinks about what I am taking and how I take it.  And she's not afraid to change her mind in front of me.  So, I'm not switching to four times a day.  I am doubling the third (night) dose.  But I am switching to four times a day with the Combivent, because it has been rather effective with helping my asthma, but I do notice a drop-off at the end of each eight-hour period.

So, she increased some meds and suggested I try a nasal emollient. You see, my sinuses are DESERT dry, too. My throat, eyes, and sinuses are my worst. I told my GP that I feel like a cocaine junkie because I have become adept at snorting. I snort saline all the time. And yet I have these huge, huge ... scabs ... that form high in my sinuses because they are so dry. Hi, my name is Myrtle Snorting Junkie Bernice Adams.

I've never talked to her about reframing, but my GP said that I should not think of myself as a junkie like a cocaine addict, but that I am a moisture junkie. YES!! That's certainly me.  I really like what she said and it sort of makes light of Sjögren's in a way I find acceptable.  I mean, if you can't poke fun of some of this stuff, you'd drown.

I'm not all that excited about spending even MORE money on yet another OTC product, but she found one for me to try. She even went price shopping right there on her computer so that I could order it before I even left the exam room.  I'm not excited, but it has been so hard to get someone to listen to me when it comes to this radical change in my sinuses.  I feel like it has been a lot of nodding and waiting for me to move on from one of my "complaints."  She heard me.  At first, she thought she had nothing for me (I laugh when she says that), but she then asked me to talk about it more and I described how I snort the mist in the shower and snort the steam from my tea and how I use the saline rinses all the time, but I cannot get what I need.  Hence, looking into emollients. 

She listens.

Anyway, we went down this long list and, as she always does, as I'm ready to go, my GP asked me if there was anything else. Well, she's talked about being a Catholic at some point in every visit, so I took a plunge and asked her if she would pray about me slipping back into that place where leaving the house started to seem so impossible. I told her about the folk approaching Amos and the debacle with the folk when the elevator door opened and how I was thinking about not taking Amos and not going and not ... well, I didn't really say exactly what I was thinking and Lord knows I don't even know what I am feeling.

But my GP wasn't done with her ideas.  She said she could pray, of course.  But she also started thinking about how I could solve my Amos problem.  She thought I could get him a vest to keep folk from petting him.  I have had several professionals offer to help me get him certified as a service dog.  I am just not sure Amos is in control of his own fears enough for that.  There are no rules for an emotional support animal, but those have no right of access.  Not, really, that I need right of access for therapy.  So, she suggested that I have any vest, maybe just a vest with Do Not Pet.   I think that might be a good idea.  

It would be a chunk of money.  Not being all out of sorts by taking the encounter with others and Amos out of the equation would be worth it.  I just need to think on the matter for a while.  

I do not know if it was appropriate to ask her to pray.  I don't.  But I did and I cannot take back those words.  Getting a message once I got back home was helpful.  I know she was trying to help before she heads off to her conference in Denver, Colorado.  A conference during which three days will be focused on medical ethics.  I love that I have a GP focused on medical ethics.

The two things she has no real concrete idea for is how terribly icy my skin becomes when I have cold spells and the numbness and tingling in my lips.  But I know she'll keep thinking on those things for me.  And she won't mind if I bring them to the table again.

I have been truly blessed by my old GP firing me.  Painful though it was, I, for the moment, have a GP inching me closer to a greater balance in managing what can be managed, so that I can have the strength to look for better ways to endure what cannot.  

1 comment:

gbkulp said...

Christ be praised for your wonderful GP.