I went to see Dr Efficient this morning. I can never get in to see my super kind GP when I’m acutely ill, because he’s always booked out several days in advance. But to be honest, when I’m aching all over, have a horrible headache, unable to keep food down and dizzy AF, I don’t need support and compassion as much as I need labs. She IS efficient, but she lacks bedside manner. Both of my GPs are very skilled and excellent doctors…each has different strengths and today Dr Efficient was…efficient. Exactly what I needed.
She believes its Adrenal Insufficiency, same as last time. Minor illness exacerbated by AI. She upped my prednisone to 50mg (after 3 days of 30mg) and then tapered me by 10mg every three days. That’s a lot of prednisone. She ordered labs and an ECG, those results will take two days. She tried to convince me to go to the hospital to be hydrated, but I told her that given last time I went to the ER I had a confirmed (on MRI) compressed nerve in my spine along with a lot of other pathology, most of my left leg was paralysed (its still numb and I still have no calf function) and they ignored me for 10 hours…yes, TEN hours. I politely refused.
She got a little shitty with me. Gave me a lecture, told me that she can do no more for me from general practice. If I get worse over the next two days, she made me promise to go to the ER. And I will. I don’t think it helped that I needed to use my sick bag in the middle of her ‘I really recommend you go to the ER’ speech…
I believe she’s honestly torn. She knows in a perfect world, she should be able to send me down to the ER, they’d run a drip for a few hours, and I’d go home in better shape. In the REAL world, I would sit in the waiting room as an immunocompromised patient, probably with lots of people who have colds and maybe even someone with flu, I would not be considered an ‘emergency’, the nurses would scorn me for coming to the ER when I’m not an emergency (few people understand where adrenal insufficiency can take you, or that it can require emergency care), and they would ignore me for somewhere between 6 and 12 hours, depending on how long I sat there until I left. That’s the reality of our local ER.
So I am at home. On the couch. The effort involved in getting to the doc knocked me out for most of the day. I have antiemtics, and I took the extra steroids at 11am. I have gastrolyte (gaaahhhh uughhh), I’m drinking water and juice. Food is still a no go, but staying hydrated is everything. I hope tomorrow is better. I hope the labs show something. I got my parathyroid hormone tested while I was there, and vitamin D, magnesium, stuff, for the osteopetrosis diagnosis. And if I DO feel worst tomorrow, I will go to the ER. I will have no choice.
As luck would have it I have an appointment with my endocrinologist next Thursday. She will be unhappy with my steroid use. She is going to have to investigate further. No one understands why I need such high doses of prednisone just to function on a daily basis…15mg, double the physiological replacement dose.
Dr Efficient impressed on me again that I need to reduce my steroids. She said I am on borrowed time for serious complications…and then she kinda laughed and said things were already serious. She was frustrated with me, but it isn’t personal with her. She’s frustrated with the situation. (Yeah, me too). That frustration comes out in her manner sometimes.
If I drop my steroids to 7.5mg, I will feel like this EVERY day. I’ve done it before, and its horrible. It’s unbearable in fact. I did the taper in early 2017 and for two months I was critically ill…all to find out if my eosinophils would rise without prednisone. I made it down to 4mg, and they didn’t. And my body was so weak and depleted, the taper contributed to the disaster that was my hysterectomy. I wasn’t healthy enough for surgery, and the surgeon did NOT do her due dilligence. She did not understand the extent of my chronic conditions, and how they impact my health, and that did not end well for me. HOpefully, not for her either!
It seems to me that living with permanently low cortisol levels, and no adrenal function is just as dangerous as living with moderate dose prednisone long term. It does seem to me to be a no win situation. Doctors are of course trained to see and deal with the more immediate dangers…but they don’t have to live a life of gastrolyte, oxycodone, antiemetics and bedrest. Oh and pain…lots of that 🙂
Anyway, I will talk to my endocrinologist next week. Her position was ‘taper to 7.5mg and come back and see me then (switch me to a longer acting corticosteroid and start a long, slow taper. Nothing I haven’t tried before, minus the corticosteroid switch). Then she looked more deeply into my super dense bones and wants to review my X-rays, parathyroid, maybe even bone marrow. But thats next week.
I will have to book a carer to take me to the appointment. My wonderful carer has a permanent part time job and is busy from 10 to 4pm weekdays. She can help in many ways, but she can’t help with most appointments. So between now and then I have to find someone else.
I hate being this dependent. Truly hate it.
But there is no point getting upset about things I can’t control. No point at all. Just sometimes, its ok to let a tear fall. It has to come out sometimes, also no point bottling up negative emotions and becoming a bitter and twisted sociopath….haha. Joking. Sort of… 🙂
So, let it bleed, let it out and let it go 🙂