⚠️ From Dr. Friedman: COVID-19: 07/2021 UPDATE AND FACTS

All of our country is very encouraged by the declining rates in both COVID-19 infections and death, due mostly to President Trump’s vaccine production and trial effort called Operation Warp Speed and President Biden’s vaccine distribution efforts. As of July 2021, The United States has administered 334,600,770 doses of COVID-19 vaccines, 184,132,768 people had received at least one dose while 159,266,536 people are fully vaccinated. The pandemic is by no means over, as people are still getting infected with COVID-19 with the emergence of the Delta Variant. In fact, recently cases, hospitalizations and deaths due to COVID-19 have gone up. In Los Angeles, the increased infection rate has led to indoor mask requirements.  The main reason that COVID-19 has not been eliminated is because of vaccine hesitancy, which is often due to misinformation propagated on websites and social media.  One of Dr. Friedman’s patients gave him a link of an alternative doctor who gave multiple episodes of misinformation subtitled “Evidence suggests people who have received the COVID “vaccine” may have a reduced lifespan” about the COVID-19 vaccine that Dr. Friedman wants to address. Almost 30% of American say they will not get the vaccine, up from 20% a few months ago. 
 
Statistics are that people who are vaccinated have a 1:1,000,000 chance of dying from COVID, while people who are unvaccinated have a 1:500 chance of dying from COVID.  I think most people would take the 1:1,000,000 risk.  Dr. Friedman has always been a proponent of the COVID-19 vaccine because he is a scientist and bases his decisions on peer-reviewed literature and not social media posts. As we are getting to the stage where the COVID-19 pandemic could end if vaccination rates increase, he feels that it is even more important for people to get correct information about the COVID-19 vaccine. 
 
MYTH:  People are dying at high rates from the COVID-19 vaccine and the rates of complications and deaths are underreported.
FACT:  The rates of complications and deaths from the vaccine are overreported.  It is a fact that when 200 million people get a vaccine, some of them will get blood clots, some of them will have a heart attack, some of them will have strokes, some of them will have optic neuritis and some will have Guillain-Barré syndrome.  These complications may not be due to the vaccine, but people remember that they got the vaccine recently.  Anti-vaccine websites seem to play up on this and give false information that COVID-19 complications are underreported and fail to note that there is no control group, so we do not know how many people would have gotten blood clots, strokes, and heart attacks if they did not get the vaccine.  For example, one anti-vaccine website highlighted a Tamil (Indian) actor Vivek, who died of a massive heart attack 5 days after getting the COVID-19 vaccine and tried to make a case that the vaccine caused that.  Of course, the massive heart attack was due to years of buildup of cholesterol in his coronary arteries and had nothing to do with the COVID-19 vaccine.  In fact, the complications attributed to the COVID-19 vaccine occur less frequently in those vaccinated than unvaccinated. The only complication that seems to possibly be more common in people who get vaccinated is blood clots, and the rate of that is still quite low.  Overwhelmingly, the COVID-19 vaccine is effective and safe.
 
MYTH:  I had COVID-19 before.  I don’t need a vaccine.  Natural immunity is better than a vaccine immunity.
FACT:  Most studies have shown that the COVID-19 vaccines are more effective, with longer-lasting immunity, than only having the COVID-19 infection.  The immunity after natural infection varies and may be quite minimal in patients who had mild COVID-19 and likely declines within a couple of months of infection.  In contrast, those who got the vaccine seem to have high levels of immunity even months after getting the vaccine.  The vaccine also protects against the COVID-19 variants.  If someone had one variant, it is unlikely that their natural immunity would protect them against other variants.
 
MYTH:  The COVID-19 vaccine leads to spike proteins circulating in your body for months after the vaccine.
FACT:  The mRNA from the vaccine, the spike protein that it generates, and all of the products of the COVID-19 vaccine are gone within hours, if not days, and do not hang around the body.
 
MYTH:  There is likely to be long-term effects, including infertility effects, of the COVID-19 vaccine.
FACT:  As the viral particles and proteins are gone within a couple hours to days and the vaccine only enters the cytoplasm and does not enter the DNA, it is very unlikely that there will be long-term effects.  So far, the clinical trials of the COVID-19 vaccine have not resulted in any detrimental effects, and it has been a year since the trials started.  Other vaccines have been used safely and do not give long-term side effects.  There is no reason to think that this vaccine would give long-term side effects, and we have not seen any evidence of long-term side effects currently. Pregnant women who received COVID-19 vaccines have similar rates adverse pregnancy and neonatal outcomes (e.g., fetal loss, preterm birth, small size for gestational age, congenital anomalies, and neonatal death) as with pregnant women who did not receive vaccines.
 
MYTH:  People with autoimmune disease should not get the vaccine.
FACT:  Persons with autoimmune disease are likely more susceptible to COVID-19, and they should especially get the vaccine.  People with preexisting conditions, including autoimmune diseases, have been shown to be give generally excellent immune responses to the vaccine, and it should especially be given to patients with Addison’s disease or Cushing’s disease who may have higher rates of getting more severe COVID-19. In fact, the CDC as well Dr. Friedman recommends EVERYONE getting the vaccine, except 1) those under 12, 2) those who had an anaphylactic reaction to their first COVID-19 vaccine. Patients with AIDS, and those on immunosuppressive therapy for cancers, organ transplants and rheumatological conditions, may not be fully protected from vaccines and should be cautious (including wearing masks and social distancing), but still should get vaccinated.
 
MYTH:  Patients with autoimmune diseases, and other conditions do not mount an adequate immune response to the vaccine and may even should get a booster shot.
FACT:  The only patients that have been found not to have a good immune response to the vaccine is those with AIDS or on immunosuppressive drugs that are used in people with rheumatological diseases or transplants.  With these exception, patients appear to mount a good immune response to the vaccine regardless of their preexisting condition and do not need a booster shot.
 
MYTH:  Why should I bother with the vaccine if it is going to require a booster shot?
FACT:  It is unclear whether booster shots will be required or not.  Currently, the CDC and FDA do not recommend a booster shot, but Pfizer has petitioned the FDA to consider it and is starting more studies on whether a booster shot is effective.  It is currently believed that the vaccine retains effectiveness for months to years after it is given.
 
MYTH:  We are almost at herd immunity now.  Why bother getting a vaccine?
FACT:  We are not at herd immunity as people are still getting sick and dying from COVID-19.  Dr. Friedman recently lost to COVID-19 his 43-year old patient with obesity and diabetes at MLK Outpatient Center. There are pockets in the United States with low vaccine rates, especially in the South.  The vaccine is spreading among unvaccinated people, while the rate of spread among vaccinated people is quite low.  Approximately 98% of those hospitalized with COVID-19 are unvaccinated. It is important from a public health viewpoint for all Americans to get vaccinated. 
 
MYTH:  There is nothing to be concerned with about the variants.
FACT:  Especially the delta variant appears to be more contagious and aggressive than the other variants currently.  The vaccines do appear to be effective against the delta variant but possibly a little less so.  Variants multiply and can generate new variants only if they are infected into patients who are unvaccinated.  To end the emergence of new variants, it is important for all Americans to get vaccinated.
 
MYTH:  I could just be careful, and I will not get the COVID-19 vaccine.
FACT:  Thousands of people who were careful and got COVID-19 and either died from it or became extremely sick.  The best prevention against getting COVID-19 is to get vaccinated.
 
MYTH:  I am young.  I do not have to worry about getting COVID.
FACT:  Many young people have gotten sick and died of COVID-19 and also, they are contagious and can spread COVID-19 if they are not vaccinated.  Everyone, regardless of their age, as long as they are over 12, should get vaccinated. 
 
MYTH:  If children under 12 are not vaccinated, the virus will still spread.
FACT:  The FDA and CDC do not recommend the vaccine for those under 12.  They are very unlikely to get COVID-19 and are very unlikely to transmit it to others.  They are the one group that does not need to get vaccinated.
 
MYTH:  COVID-19 vaccines are an experimental vaccine.
FACT:  While it is true that the FDA approved COVID-19 vaccines were granted emergency use authorization in December 2020 (Pfizer and Moderna) and Johnson and Johnson in February 2021. Both Pfizer and Moderna have petitioned the FDA for full approval, but by no means are these vaccines experimental. As mentioned, over 180 million Americans and many more worldwide have received the vaccine. This is more than any other FDA approved medication. Clinical trials are still ongoing and have enrolled thousands of people and Israel has monitored the effect of COVID-19 vaccines in 7 million Israelis. 
 
MYTH:  The COVID-19 vaccine is a government plot to kill or injure people or a war against G-d.
FACT:  Yeah right
 
If you want the pandemic to end, please get vaccinated and encourage your friends and colleagues to get vaccinated. For more information or to schedule an appointment with Dr. Friedman, go to goodhormonehealth.com

🖥 SherryC Cushing’s Slideshow

Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College in 2017.  I am resharing since Sherry died last year.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

🦓 Day 30, Cushing’s Awareness Challenge 2021

Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…

To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year.  Possibly this has become a tradition.

I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much.   I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through.

So, tomorrow, I’ll go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name!

I am trying to get away from always reading, writing, breathing Cushing’s, and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors.

If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally.  Those are listed in the right sidebar of this blog, past the Categories and before the Tags.

Meanwhile…

Time-for-me

Choose wisely…

🦓 Day 29, Cushing’s Awareness Challenge 2021

People sometimes ask me how I found out I had Cushing’s Disease.  Theoretically, it was easy.  In practice, it was very difficult.

In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”

I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.

After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it.  It was too rare.  I was rejected each time.

Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.

According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”

So, doctors typically go for the easily diagnosed, common diseases.  Just because something is rare doesn’t mean that no one gets it.  We shouldn’t be dismissed because we’re too hard to diagnose.

When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.

When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me.  Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me.  They packed me off to an endo where the process started again.

My final diagnosis was in October 1987.  Quite a long time to simply  “…ask your doctor about Cushing’s”.

Looking back, I can see Cushing’s symptoms much earlier than 1983.  But, that ‘s for a different post.

🦓 Day 28, Cushing’s Awareness Challenge 2021

Over the years, we went on several Windjammer Barefoot Cruises.  We liked them because they were small, casual and were fairly easy on the wallet.

They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever.  One trip we were supposed to go to Saba but couldn’t make port.  A lot of people got off at the next port and flew home.

The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip.  We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride.

The last trip we took with them was about two years before I started having Cushing’s problems.  (You wondered how I was going to tie this together, right?)

The cruise was uneventful, other than the usual mishaps like hitting docks, missing islands, and so on.  Until it was a particularly rough sea one day.  I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery.  I fell and cracked the back of my head on the curved edge of a table in the dining area.  I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery, I got some morphine.

We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all.

The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).

All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.

The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome by Jim Carrier.  The ship, which was sailing in the center of the hurricane, experienced up to 50-foot (15 m) waves and over 100 mph (160 km/h) winds, causing the Fantome to founder off the coast of Honduras.

This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.

I read this book and I was really moved by the plight of those crew members.

I’ll never know if that hit on my head contributed to my Cushing’s but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.

🦓 Day 27, Cushing’s Awareness Challenge 2021

I first saw a similar image to this one with the saying Life. Be in it at a recreation center when my son was little.  At the time, it was “Duh, of course, I’m in it”.

The original image was a couple of males, a couple of females, and a dog walking/running.  No folks in wheelchairs, no older folks, and certainly no zebras.

It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world.  It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.

A dear friend who has not one, but two forms of cancer was traveling throughout Europe for the first time after her husband’s death wrote:

Some final words before I turn in for the night. If there is a spark of desire within you to do something which is not contrary to God’s Holy Law, find a way to make it happen. All things are possible and blessings abound for those who love Him. Life is such an adventure. Don’t be a spectator – live every single moment for Him and with Him.

Somedays, it’s hard even getting up in the morning but I’m trying.  Pre-COVID I took Water Aerobics for People with Arthritis and I actually went to class three times a week.  Now, I took the stuff I learned there and do it 3 times a week as part of “water walking” by myself or with my DH.   I got a “part-time” job several years ago and I’m  teaching piano online.  We had plans for a cruise to Norway which COVID made us reschedule for Alaska, which has to be rescheduled…again.

This is the one and only life I’ll ever have and I want to make the most of it!

🦓 Day 26, Cushing’s Awareness Challenge 2021

So often during the diagnosis phase of Cushing’s I felt lost like this picture – I was walking alone to an unknown place with an unknown future.

My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors.  In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends.  My first hope was from a magazine (see Day Six)

After I got that first glimmer of hope, it was off to the library to try to understand medical texts.  I would pick out words I did understand – and it was more words each trip.  I made Xerox copies of my findings to read at home and try to digest. (I still have all those old pages!)

All my research led me to Cushing’s.

Unfortunately, the research didn’t lead me to doctors who could help for several years.  That contributed greatly to the loneliness.  If a doctor says you’re not sick, friends and family are going to believe the doctor, not you.  After all, he’s the one trained to know what’s wrong or find out.

I was so grateful when I finally got into a clinical trial at NIH and was so nice not to be alone with this mystery illness.  I was also surprised to learn, awful as I felt, there were Cushies much worse off than I was.

I am so glad that the Internet is here now helping us all know that we’re not alone anymore.

We’re all in this together with help, support, research, just being there.  I love this quote from Catherine at http://wheniwasyou.wordpress.com/2012/03/31/wheniwasyou/

Mary, I am delighted to see you here. Cushings – because of the persistent central obesity caused by (we know now) the lack of growth hormone plus the hypothyroidism I was diagnosed with (but for which treatment was ineffective due to my lack of cortisol) – was one of the things I considered as an explanation for my symptoms. Your site was enormously educational and helpful to me in figuring out what might be happening to me. Those other patient testimonies I referred to? Many of them were the bios you posted. Thank you so much for commenting. I am so grateful for the support and encouragement. I really hope that my experiences will help other undiagnosed hypopituitary patients find their way to a diagnosis. I often used to dream that one day I’d get to say to others what was so often said to me: don’t give up, there will be an answer. I kept believing in myself because people I hadn’t even met believed in me. Now I am finally here and I do hope my story will help others to have faith in their own instincts.

Thanks again. Please do keep in touch.

Catherine

🦓 Day 25, Cushing’s Awareness Challenge 2021

This is another semi-religious post so feel free to skip it 🙂

I’m sure that many would think that Abide With Me is a pretty strange choice for my all-time favorite hymn.

My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.

Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches.  The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.

So, some of my “favorite hymns” are those that I sang when I was out with my Dad.  Fond memories from long ago.

In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years.  I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.

I was terrified and sure that I wouldn’t survive the surgery.

Somehow, I found a 3-cassette tape set of Readers Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.

At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.

When I had my kidney cancer surgery, those tapes were long broken and irreplaceable, but I had replaced all the songs – this time on my iPod.

Abide With Me was on this original tape set and it remains a favorite to this day.  Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700.  When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them.  I sign page 700.

I think that many people would probably think that this hymn is depressing.  Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.

This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.

If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.

~John 15:7

Abide With Me

Words: Henry F. Lyte, 1847.

Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:

This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.

Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:

O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.

For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.

Abide with me; fast falls the eventide;

The darkness deepens; Lord with me abide.

When other helpers fail and comforts flee,

Help of the helpless, O abide with me.

Swift to its close ebbs out life’s little day;

Earth’s joys grow dim; its glories pass away;

Change and decay in all around I see;

O Thou who changest not, abide with me.

Not a brief glance I beg, a passing word;

But as Thou dwell’st with Thy disciples, Lord,

Familiar, condescending, patient, free.

Come not to sojourn, but abide with me.

Come not in terrors, as the King of kings,

But kind and good, with healing in Thy wings,

Tears for all woes, a heart for every plea—

Come, Friend of sinners, and thus bide with me.

Thou on my head in early youth didst smile;

And, though rebellious and perverse meanwhile,

Thou hast not left me, oft as I left Thee,

On to the close, O Lord, abide with me.

I need Thy presence every passing hour.

What but Thy grace can foil the tempter’s power?

Who, like Thyself, my guide and stay can be?

Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;

Ills have no weight, and tears no bitterness.

Where is death’s sting? Where, grave, thy victory?

I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;

Shine through the gloom and point me to the skies.

Heaven’s morning breaks, and earth’s vain shadows flee;

In life, in death, O Lord, abide with me.

🦓 Day 24, Cushing’s Awareness Challenge 2021

bestday

I wrote parts of this in 2008, so all the “yesterdays” and “last weeks” are a little off. 

Wow.  That’s about all I can say.  Yesterday was possibly the best day of my life since I started getting Cushing’s symptoms, and that was over 30 years ago.  More than a quarter of a century of feeling exhausted, fatigued.  A quarter of my life spent taking naps and sleeping.

Last week  in this post I wrote in part:

I went to the endo yesterday.  Nothing has changed for me.  Nothing will.  He wants me to take more cortef.  I don’t want to gain weight again.  He looked up Provigil and it’s not indicated for panhypopituitarism.  So he won’t prescribe it.  My kidney surgeon probably won’t let me take, anyway, but it was worth a try.

He did mention that in “only” 2.5 years maybe I can go back on growth hormone.  I don’t want to live like this another year let alone 2.5.  But then, when I was on GH before it didn’t help me like it helps most everyone else.

I’m tired of catering to a kidney that may or may not fail sometime anyway, tired of being so exhausted all the time.  I feel like I’ve lost nearly half my life to this Cushing’s stuff already.

So, yesterday I was supposed to go to a conference on web design for churches.  My church sent me because they want me to spiff up their site and make them a new one for Christmas.  I wanted to go because, well, I like learning new stuff about the web.  I figured that I would learn stuff that would also be useful to me in others of my sites.

And I did!

But the amazing thing is this.  My son had told me  about a medication that was very similar to Provigil, that he had tried it while he was writing his doctoral thesis and it had helped him.

So, having tried the official doctor route and being rebuffed – again – I had decided to try this stuff on my own.

Just the night before I had written a response on Robin’s wonderful blog that reads in part:

I hate this disease, too.

I was just talking to a friend today about how I’d try nearly anything – even if it ruined my one remaining kidney – to have a few days where I felt good, normal, where I could wake up in the morning rested and be able to have energy for the day.

I want to go out and have fun, to be able to drive for more than 45 minutes without needing to rest, to be have people over for dinner, whatever. I hate being restricted by my lack of energy.

My endo says to cheer up. In two and a half years I can try the growth hormone again. Whoopee. Didn’t work the first time and maybe gave me, or contributed to, cancer growth. Why would I want to look forward to trying that again?

I want to feel good now. Today.

I hate that this disease kills but I also hate that it’s robbed me of half my life already.

I wish doctors would understand that even though we’ve “survived”, there’s no quality of life there.

I hate Cushing’s. It robs so much from so many of us. 😦

As I said earlier, I have a history of daily naps of at least 3 hours a day.  It cuts into everything and prevents me from doing many things.  I have to schedule my life around these naps and it’s awful.

rockford-2006-sue 12-18-2006 2-09-18 pmA few years ago I went on a Cushie trip to Rockford.  I’ve been there a few times and it’s always so much fun.  But this first year, we were going to another Cushie’s home for barbecue.  I didn’t drive, I rested in the back of the car during the drive.  We got there and I managed to stay awake for a little while.  Them I put my head down on the dining room table and fell asleep. Our hostess kindly suggested that I move over to the sofa.

So, I have a long history of daily naps, not getting through the day, yadda, yadda.

So, I was a little nervous about yesterday.  I really wanted to go to this conference, and was afraid I’d have to go nap in my car.

I got up at 5:30 am yesterday.  Before I left at 7:15, I took my Cortef and then I took my non-FDA approved simulated Provigil.  (Although it’s not FDA approved, it is not illegal to possess without a prescription and can be imported privately by citizens)

I stayed awake for the whole conference, went to a bell rehearsal, did Stacey’s interview, had dinner and went to bed about 10:30PM.  NO NAP!  I did close my eyes a little during the 4:00PM session but it was also b-o-r-i-n-g.

I stayed awake, I enjoyed myself, I learned stuff, I participated in conversations (completely unlike shy me!).

I felt like I think normal people feel.  I was amazed.  Half my life wasted and I finally (thank you Michael!) had a good day.

My kidney doctor and my endo would probably be appalled but it’s about time that I had some life again!  Maybe in another 25 years, I’ll take another pill.  LOL


Well, the energy from the Adrafinil was a one day thing.  I felt great on Thursday.   Friday and Saturday I slept more than usual.  Saturday, today, was one of those days where I sleep nearly all day.  Maybe if I took the drug more it would build up in my system, maybe not.  But it was still worth having that one day where I felt what I imagine normal to be.

While I was being a slug today, my husband painted the entire house.

I’m not sure if I would have been this tired today or if I was somehow making up for the nap I didn’t get on Thursday.  Whatever the case, I’m glad that I had the opportunity to try this and to experience the wonderful effects, if only for one day.

Information from a site that sells this:

Alertness Without Stimulation

Adrafinil is the prototype of a new class of smart drug – the eugeroics (ie, “good arousal”) designed to promote vigilance and alertness. Developed by the French pharmaceutical company Lafon Laboratories, adrafinil (brand name, Olmifon) has been approved in many European countries for treating narcolepsy, a condition characterized by excessive daytime sleepiness and other unusual symptoms.

Non-narcoleptic users generally find that adrafinil gives them increased energy and reduces fatigue, while improving cognitive function, mental focus, concentration, and memory. It has been reported that quiet people who take adrafinil become more talkative, reserved people become more open, and passive people become more active.

Of course, many stimulant drugs, ranging from caffeine to methamphetamine, are known to produce similar alerting/energizing effects. Adrafinil has been described by some users as a “kinder, gentler” stimulant, because it provides these benefits but usually with much less of the anxiety, agitation, insomnia, associated with conventional stimulants.

Adrafinil’s effects are more subtle than those of the stimulants you may be used to, building over a period of days to months. They appear to be based on its ability to selectively stimulate 1-adrenergic receptors in the brain.2 These receptors normally respond to norepinephrine (noradrenaline), a neurotransmitter linked to alertness, learning, and memory. This is in contrast to conventional stimulants, which stimulate a broader spectrum of brain receptors, including those involving dopamine. Its more focused activity profile may account for adrafinil’s relative lack of adverse side effects.

There’s more info about Adrafinil on Wikipedia

It’s interesting that that snipped report that people become more talkative.  I reported that in the original post, too, even though I didn’t realize that this was a possibility.

A good quote that I wish I could relate to better:

“Time is limited, so I better wake up every morning fresh and know that I have just one chance to live this particular day right, and to string my days together into a life of action and purpose.”

Lance Armstrong (1971 – )
Cyclist, seven-time Tour de France champion and cancer survivor


2011 stuff starts here:

Awhile ago I went to a handbell festival. I took a bit of adrafinil on the main day to try to stay awake for the whole day. It didn’t seem to keep me as on as it did before. I can’t be used to it already. Maybe I’m just that much more tired than I was before.

Our son lives in New York and every few years he gives us tickets to see a Broadway show.  A couple years ago we took the train to NY to see Wicked.  Usually my DH wants to go out and see sights while we’re there.  I usually want to nap.

This time we got up on Saturday morning, went out for breakfast.  I wanted to take in the whole day and enjoy Wicked so I took some Adrafinil.  We got back to the hotel and got ready to go to a museum or other point of interest.

But, DH wanted to rest a bit first.  Then our son closed his eyes for a bit…

So, I found myself the only one awake for the afternoon.  They both work up in time for the show…

Sigh  It was a great show, though.

A recent Christmas I was going to get my son some Adrafinil as a gift.  The original place we bought it didn’t have any more stock so I tracked it down as a surprise.  He was going to give me some, as well, but couldn’t get it from the original source, either.  So he found something very similar called Modafinil.  GMTA!


And 2016..

Saturday, 4/23/16 really was one of the best days I’ve had in a long time.

I’ll be writing a longer post about that later on my travel blog but here’s the original plan: https://maryoblog.com/2016/04/23/busy-saturday/

Suffice it to say, we arrived at the Tattoo and I got no nap at all, all day!

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🦓 Day 23, Cushing’s Awareness Challenge 2021

Cushie Crusader, that’s me…and many others.  I think we all have an opportunity to be Cushie Crusaders every time we tell others about our illness, share our story on or offline, post about our struggles – and triumphs – on the message boards, write blog posts in this Cushing’s Awareness Challenge…

When we have prayer time in my handbell practice or choir rehearsals I try to mention issues that are going on in the Cushing’s community.  People are slowly but steadily learning about Cushing’s week by week.

A piano student mentioned that a person in a group she is in has Cushing’s, a non-Cushie friend mentioned last week that she had gone with a friend of hers to an endo appointment to discuss Cushing’s.

Get out there and talk about Cushing’s.  Let people know that it’s not just for dogs and horses (and sometimes ferrets)!

Here’s something I had made for Sue with SuperSue embroidered on the back.

Picture your name instead: