Getting Ramped Up

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NOTICE: This post is being cross-posted on both blogs because some of my readers only read one blog and this post applies to both. Don’t feel obligated to read or comment on it twice.       
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Getting settled into a new house has a lot of challenges when occupants are mobility challenged.  The first problem is getting in and out.  That problem was initially solved with a wooden ramp in the garage.

Having it in the garage is supposed to allow me to get my wheelchair to and from the car during bad weather.  But we’ve got the garage full of stuff from a storage building.  We can’t get the car in there right now.  We’ll get that sorted when the weather gets cooler.  I can still use the ramp to get to the car outside.  The only real problem with having a ramp in the garage is that we have a garage door opener that doesn’t work if the electricity goes off. 
A few days ago, we found a metal ramp for sale on Craig’s List.  My husband and second grandson went to get it.  They had to disassemble the ramp at the seller’s house.  When they got it to our house, they had lots of help getting it reassembled outside the back door.

I won’t be trapped without electricity anymore.  And I won’t have to fight the side gate to get into the back yard.  But true to form, every problem solved creates a new problem.
The new ramp has only been installed for two days.  But we’ve had a lot of rain this summer.  Now I have to mow the ramp…

Signs of Change

Medically speaking, a sign is something you can see (pimples, stretch marks, weight gain or loss,…), a symptom is something you don’t see (fevers, nausea, pain,…).  I have blogged more about symptoms than I have about signs.

Cushies learn to pay attention to every little change in their bodies and health to monitor disease progression.  You'd think we'd be used to seeing changes.  But watching for signs of improved health is a very slow process—a process that is about as mind-numbing as intently watching toe nails grow. And because the changes are so very slow, they can be missed even while we’re watching and praying for them.  Missing those changes, not recognizing the progress is discouraging, disheartening, depressing.

Especially when post-Cushing’s symptoms can be so variable and miserable.

That’s why it’s really important to document visible changes over time.  Looking back to what we looked like with Cushing’s and comparing that to our current appearance makes slow change so much easier to see.  And seeing it documented brings hope and joy.

Bearing in mind that my scales are not showing much weight lost, here are my recent small changes.
This is me with Cushing’s.  My neck is swallowed up in fat.  So are my necklaces.

 

This is me 28 months after surgery.My fat neck has been reduced to a wattle.  And Look! My collar bones are beginning to show themselves!



And here’s a different angle that shows off my neck muscles. 

 

The fat pads that look like a horse collar around my neck are more defined now, but only because I’ve lost so much of the fat around them.  That “horse collar” is a sign of Cushing’s.  Maybe, in time, it will go away too.

Looking at these pictures together is so much better than just looking in the mirror and focusing on how far I have yet to go.  The pictures tell me the truth about how far I have come.

And that makes all the difference.

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…..

Balancing the Teeter-Totter

 

I wrote in an earlier blog that having Cushing’s Syndrome is like living on a yo-yo. You don’t have any control over what it does to you. Recovery is like living on a teeter-totter. But on a teeter-totter, you have some control and the goal here is to keep it balanced.  I’m getting a little better at it.

Cushing’s Syndrome takes a terrible toll on a body, but also on the mind and personality.  It’s no wonder many cyclic Cushie’s are wrongly diagnosed as bi-polar. 

It’s frightening to be emotionally out of control and not know why.  It worried and frightened my family too.  Many families don’t survive the emotional upheaval.  I thank God that my steroid-induced emotions were not stronger than my family’s ability to cope with them—especially before my diagnosis, before any of us understood what was happening.

I’m not experiencing extreme emotion anymore—at least not without cause.  It’s a welcomed part of recovering from Cushing’s.  My remaining adrenal gland is functional enough that I don’t need daily cortisol supplements anymore.  So I’m on a pretty even, and predictable, emotional keel these days.  Usually.  Most of the time.

From time-to-time, my cortisol reserves get depleted because I use them up faster than my adrenal is making them.  Little things can pile up into sufficient stress to make my cortisol low.  Things like having to leave the house several days in a row, road vibrations during a long drive, deadlines falling in on me, sudden complications to any activity .  It doesn’t take much.  The balance of my cortisol production and cortisol use is much more fragile than I’d like it to be.

When my cortisol gets low, I cry too easily.  I also get joint/muscle pain/weakness, diarrhea, nausea, vomiting, low cognitive function,…  These symptoms don’t appear in any particular order.

Living with only one adrenal glad that can’t always keep up with my cortisol needs leaves me with a couple of choices.  The preferred one is to control my stress to keep my cortisol needs within the limits of my adrenal production.  The second is to stress dose with a cortisol supplement. 

Controlling my stress means making mindful choices, planning ahead when possible, opting out when necessary, trying to establish and maintain routines... Each day’s activities must be weighed against the possibility of whether or not they are likely to overtax my adrenal function. Even good stress is stress. So I’ve had to miss some fun times as well as avoiding not so fun times.  If I know my adrenal function will not keep up anyway, and I can’t avoid the activity, I take a cortisol supplement before starting.

Stress dosing can get me through a stressful time, but it also suppresses adrenal function—a two-edged sword.  So I try to avoid it as much as possible.  Often this means living with symptoms of low cortisol as much as possible.  Non-steroidal anti-inflammatories, anti-diarrheals, and anti-nausea medicines help keep those symptoms.  So long as they work, I can sometimes avoid cortisol supplements until my adrenal catches up again.

My family has gotten pretty good at recognizing when things are getting too stressful for me and helping me adjust activities or stress doses.  And they honor my need for a lot of restful, low stress days following a busy or stressful day. 

So, in case you were wondering who is on the other end of the teeter-totter helping me keep it in balance, it’s my family.  After decades of Cushie living, learning to live a balanced life is a challenge, an adventure.  Balance takes a lot more skill and control.  Maintaining balance takes a lot of practice.  I could never do it without the support of my family. 

I thank God for them every day.