Transfer of care 😯

[DRunnerchick]

Hello all!

Well, the Wizard has held his last appointment with me and is moving to another state (out of academic med and back into private practice). He doesn’t actually leave until Mid-August, so he’ll be available for questions or problems until then. I don’t think he’s actually holding appointments and is out of the office quite a bit anyway. They have another FT neuro and one PT (2days/wk) after he leaves. They are looking for another FT. He is transferring my care (with my permission) to the FT doc in the office.

Change is inevitable. I figured if this doctor is one of the doctors who originally hired the Wizard, he’s probably workable on my end. He’s more experienced by a decade or so and his patient comments are excellent. We’ll see. I will give it a go and make the best of it. The first appointment is a 45 minute virtual visit. I can’t believe it is virtual. WTH! Why make it longer if they can’t really examine you? More cut and paste in the EHR (it will be incorrect anyway). It’s hard enough for my neuro divergent brain 🧠 to pick up on cues in person. It’s nearly impossible on a virtual call.

I will need to compile a suitable condensed summary of my history of illness for the visit before 14 October. There’s so much, I couldn’t possibly expect him to read through it with all the “note bloat” from cut and paste in the EHR. It is possible that he will aim to correct some of that but I suspect it would take even a much longer appointment to weed and disentangle it. Heck, mine says I’m a still a student (NOT-always learning, still paying off student loans, but not presently earning any additional degrees), married and divorced 🤣🤣🤣 and my symptoms started 2 years ago, when I was clearly diagnosed and undiagnosed with RA in ‘16/17 etc. possibly lupus in ‘17 then onward to SPS. I’ve been sent to 11 specialties and a research scientist 🤷‍♀️ Hopefully, this guy has a sense of humor, keen curiosity and deep humanity.

Before that all comes about, we fight the good fight with my daughter. She has been ill for quite some time. She is also plagued with some rare entities. She has bilateral lower limb CRPS, severe chronic migraines, and has had some other symptoms of late that have re-emerged (from years past when it was proposed that she could have cyclical Cushing’s Disease- a space occupying brain tumor on the pituitary). Sometimes, in the same realm are Neuro endocrine tumors (NETs) that can have similar symptoms because of downstream endocrine effects. She mentioned to her neuro, who tested thyroid-abs which would be under his purview. All were negative so he sent her back to GP. He only tested for Pheochromocytoma (NET on adrenal).One of the substances came back 1.8x normal but usually they expect it to be 2x of normal. So, on the 24h urine it was negative but there was a note that said large volume can invalidate test (N=600-2000ml). Hers was 4100. Which, this was the second test. He had to put on a second order because the first time, she filled up the 3L jug and still had 10 hours left. So even with trying to restrict a bit, it was still more than 2X the nl. Her A1C was normal in December so they should redo it but I am more inclined to lean with diabetes insipidus. And yet this guy says no follow up is needed! Either you thought it was serious enough to run the initial labs or not! Now you just drop it?She’s had continuously flagged labs since June 2020 when her last GP left. I just do not know what has happened to healthcare. She sees her neuro again on 4 Aug. 🤞

Y’all go catch a summer breeze on your face. Godspeed!✨🦄❤️

D🏃🏽‍♀️

[thestorm]

Hi D. My late as always stroll in the forum. Not here very much. But, reading your post I could not help to reply. Lord bless you, and your dear daughter, truly in my heart. It's like the game show, Let's Make A Deal. Sorry, number one???? It is so sad to read the paths that you, me, and so many are on with our healthcare. I have been where you stand and your daughters also. Over and over again. One Doctor passed the uncertainty to the next. No calm in the Storms there or here. My all goes out to you and her. You are literally running a marathon. I just want you to know I hear you, and feel your worries, concerns, and anticipation. I wish I could be of more help. You are in my prayers, always. Please keep us up on any progress. Much love and ✌️🕊️🥰🤗😇💖.

[DRunnerchick in reply to thestorm]

Thanks! 🙏🏼✨

It’s pretty horrific, isn’t it?! For all of us. I’ve seen this slow moving train wreck (the current state of healthcare, not just in the U.S.) for quite some time. I’ve worked in HC in some form since the early 80s. I worked in EMS with HIV when it was still called GRID and we only wore gloves when delivering babies. Those were “the good ol’ days”.

My daughter didn’t wake up until 4:00 this afternoon. She didn’t tell me last night that she had the worst migraine of her life. I knew she had taken a triptan yesterday and she did her Aimovig injection (monthly MAb for migraines) Friday. So, it is highly unusual to even have a migraine after her inj. She said she was having left sided weakness before she went to bed and no vision in her left eye. When she woke up, her vision was okay but she still has weakness. TIAs are a known symptom of NETs. I told her if there is any inkling again, we go straight to the closest ED/A&E. I’m not even messing with the incompetent GP. Let the insurance sort it out. Just another chapter in this ol’ page turner. How’s your baby Storm doing? I always think of your precious pupper! 🐾🐾🤎✨

D🏃🏽‍♀️

[thestorm in reply to DRunnerchick]

Thank you for asking about Storm dear D. He has his sloth hanging on him, 😂 LOL, Shedding like crazy. He is hating this crazy hot weather, as am I...... I hope this makes you and your daughter 🤭 a bit. My prayers are with you both ❤️❤️❤️❤️❤️

Not liking this hot weather. Stormy sunshine 🌹🌄

[DRunnerchick in reply to thestorm]

So precious! Blessed creatures. I understand him not liking the heat. It is 97F here in the PNW today. We just aren’t used to it up here and most older homes don’t have A/C. I had Akitas in SoCal, NorCal and PNW. They loved the snow the best! Thankfully they would only blow coat twice a year for about 10 days. I would use horse shed blades because it would get down to the undercoat without touching their skin. They loved it and I loved that it shortened brushing, cleaning and shedding time. The appreciated being cooler that much faster (no hot spots 😀). Thank you for allowing us to live vicariously through your baby.

We do have some ravens in the neighborhood that have followed my daughter on her runs and my walks. They have named her and they have a special call for her if she isn’t out yet a certain time. They also come say goodnight to us in the trees behind the house every night. They are Nevermore, Knowledge and Wisdom. We think Knowledge & Wisdom are a bonded pair and we have seen 4 fledglings with them. Knowledge comes for her in the morning. He wait for her in the tree by where she stretches. They really are beautiful, intelligent birds. They are the only birds known to recognize human faces. Stay cool! Stay safe! 🌺⛱🆒✨

D🏃🏽‍♀️