Zaphod, he ain’t…

Those of you who followed me here from my blog on Multiply will remember Endo2, an arrogant, incompetent who knew almost nothing about Cushing’s Syndrome and wrote a five page clinic report discussing signs (things you can see)and symptoms (things you can’t see) I did not have, as well using language (though not the actual word) that described me as a hypochondriac, desperate for an unnecessary surgery.  He reminds me of President Zaphod in Hitchhiker’s Guide to the Galaxy who said “If there's anything around here more important than my ego, I want it caught and shot now!” Yep, that’s Endo2.

I had been initially diagnosed with Cushing’s by a doctor in St. Louis.  Endo2 is local to me and took great offense that I had seen another endo first.  Thus his five page rant against my diagnosis. After I read it, I never went back to him. (This is why we need to have copies of all our medical records.  Without a copy of that report, I might have stayed under his incompetent care and died before getting a curative surgery.)

Endo3 was a well-recognized California specialist in Cushing’s.  He confirmed the diagnosis and sent me to surgery in Wisconsin, where I met Endo4 who would be onsite if there were any complications during or after surgery.  After surgery I continued under Endo3’s care, where I have been quite content.  The trouble is that Endo3 is 1,500 miles away and appointments are now done by phone.  He doesn’t accept any insurance, so I have to pay out of pocket and wait for reimbursement from my insurance company.  But my insurance company won’t pay for phone appointments.  Still, paying for phone appointments out of pocket is not as expensive as traveling back to California for another face-to-face appointment—even if the insurance will reimburse part of the office charge.

Recent illness, however, has made me try once again to find a local endocrinologist—one who is familiar with my adrenal issues and takes my insurance.  I like knowing that if I end up in the ER or hospital room a doctor who knows me and my medical history will be available to walk in and see that I get proper care.  So PCdoc referred me to Endo5.

I looked at his online bio and discovered that we both earned our bachelor degrees from the same small town regional state university, Northeastern State in Tahlequah. He earned his medical degree at OSU in Stillwater.  Both excellent but non-uppity schools.  A good start.

At the appointment, he walked in with his laptop, put it on the table (forcing him to sit with his back to me), and apologized for having to take time to set up a new patient file.

“We can’t do anything without our computers these days,” I joked.

“I can,” he sighed, “but they won’t let me.”  And--true to the new medical exam model--the appointment continued with more check boxes than eye contact.  He was all business, spoke softly, had a gentle touch, and paid attention when I spoke.  He never interrupted me.  He explained with sufficient depth (not too much or too little) and in plain language.  He did not challenge my diagnosis, blame me for my obesity or diabetes, or treat me like I was anything less than a partner in my medical care. 

Endo5 ordered more labs (who didn’t see that coming?) and told me to quit worrying about trying to wean off the steroids.  He explained that most people naturally produce about 30 mg of cortisol a day.  So, if I am stable on 15 mg of hydrocortisone, my lone adrenal gland is doing half the work. He thinks that if that is all the adrenal is doing after twenty-eight months post-op, remaining stable is a better goal than weaning off completely.  15 mg is a low dose that he says is not suppressing my adrenal, raising my blood sugar or blood pressure, or causing weight gain.  He’s happy with that.  I’m happy with that.  PCdoc will be happy with that.

I will still have times that I will need more steroids to deal with extra stress, but being stable on a regular dose makes life much more manageable.  No more painful weaning.

Endo5 is a gentleman and a gentle man. He’s intelligent, caring, reasonable, respectful, easy to talk with, and struggling to keep those check boxes subordinate to good medical practice. Zaphod, he ain’t.
I think I’m going to like Endo5.

Confession

Forgive me, readers and followers, for I have sinned against you by not blogging for ten months.

They have not been easy months, but they have been productive.  We closed on our house November 1st and moved in over the Thanksgiving weekend.  No more hiding from stressful situations.  There was much packing, unpacking, and settling in to do.  I’m back on daily steroid supplementation.  I don’t quite have full sail, but I’m sailing at a steady pace.

A few months after surgery, I  was able to get off Lasix but had to so back on it a few moths later.  In January, I started having issues with low salt and finally figured out that the Lasix was flushing salt.  PCdoc took me off the Lasix again (with permission to take an occasional dose if needed) and I’ve done quite well without it even though I am now eating a high-salt diet.  On the rare occasion that I get enough salt to cause my feet to swell, I just drink more water to flush it out.  It’s still a balancing act, but I’m getting better at it.

In March I got a stomach bug.  It started with the same symptoms I get with low cortisol: fatigue, nausea, diarrhea.  I increased my steroids incrementally until I got to 80 mg. because I wasn’t keeping it all down. By then I knew it wasn’t just low cortisol.  I managed to keep enough Zofran down to reduce the vomiting to every two hours.  Then I was able to eat a few bites and drink a bit of water.  On the third day, I finally called PCdoc for an anti-diarrheal because nothing over-the-counter helped.  The bug held out a few more days but finally went away.  I should have gone to Urgent Care for fluids (which would have replaced both the water and the salt I was losing) but I was just too sick to leave the house. 

It took several weeks for me to get my strength back.  Next time I will go to Urgent Care immediately if the first extra dose of steroids doesn’t stop the symptoms.  I’m pretty sure staying properly hydrated and salted early on would have sped my recovery.
 
I’ve tried to wean off the steroids since then. I can go to 12.5 mg for a few days, but haven’t been able to stabilize on that dose.  I’m stable on 15 mg.

That’s enough for now.  More soon.  Thanks for your patience and emails during my silence.

The Wind in My Sails….

is gone.  But that isn’t necessarily a bad thing.

In the days of sailing ships, crews could be stranded for days or weeks on end with no wind for their sails.  Areas of the sea near the equator were most likely to be without wind for endless days.  Sailors called the windless days “the doldrums,” and legends abound of sailors being driven mad by the sensory deprivation of endless calm seas which offered no visual, tactile, or auditory relief from the seas blending into the horizon.

The doldrums, however, can be a good place to rest from constant motion and threats of storms, fickle winds, and ocean swells.  They provide time to mend the sails and nets, touch up the varnish, refill the fish barrels, wash and mend clothing, and finish any number of chores for preservation and renewal of ship and crew.  And it when the chores are done, there is time and energy left for recreation.  A welcomed break.  A “staycation” of sorts.

So while my adrenal glad is providing insufficient “wind in my sails,” I am experiencing a sort of sensory deprivation…limiting social contacts and avoiding both good and bad stress whenever possible. Some folks might think that my withdrawal is symptomatic of depression.  But they’d be wrong.  Mostly I’m trying to avoid having to stress dose so my adrenal function has time to improve.  Life is good.  I am quite happy.  I am simply resting and relaxing as much as possible.  Giving my body some healing time away from the demands of an active sea. 

I am certainly not avoiding life.  These past months have been house-hunting months.  But I’ve spent a lot of time at home, quietly searching the Internet for homes and only venturing out to view the ones our realtors have pre-screened for us—a half dozen or so.  This week, we put a house under contract.  If all goes as planned, we will be moved by the middle of October.  We’ll delegate and hire out as much of the move as possible.  I’m sure life will be much busier after that with all of our grandchildren only minutes away.

After the storms and rough waters of Cushing’s Syndrome, I could get used to living on the calm waters of the doldrums.  Still, humans need some stress in their lives.

If only to avoid the madness…..