Video

⁉️ Myth: “You should be all better by now!”

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Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.

 

Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).

The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).

However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).

According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.

It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).

For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).

Here are some ideas for helping the chronically ill person and family:

• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are

• Make short visits to not overtire or over stimulate the patient

• Send a card or make a short phone call to the sick person

• Look for ways to help with young children

• Send a small gift

• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”

• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).

Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.

Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones:

🦓 Day 25, Cushing’s Awareness Challenge 2022

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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.

💉 Helpful Doctors: Ohio

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Many people on the message boards see Dr. Kirschner.  Here’s a short adrenal video:

 

 

When it comes to adrenal cancer care, expertise is critical. The James at Ohio State expert Dr. Lawrence Kirschner explains what you should look for and why.

The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute is located at 460 W. 10th Ave. on the Ohio State campus. (43210). To learn more about the OSUCCC – James visit: https://cancer.osu.edu/

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap

🦓 Day 10, Cushing’s Awareness Challenge 2022

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This is one of the suggestions from the Cushing’s Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.

If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors’ notes, keep your lab findings, get second/third/ten or more opinions.  Make a calendar showing which days you had what symptoms.  Google calendars are great for this.

This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.

In this video, he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

7a4e4-maryoonerose

⁉️ Cushing’s Myths and Facts: Cushing’s is RARE, No one has Cushing’s!

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Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”

myth-busted

Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.

In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non-experts tend to not test accurately and adequately for Cushing’s.

With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.

The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:

Please review the following links:
http://home.comcast.net/~staticnrg/Cushings/LimitationsSC_UFC_dex_mildCS.pdf
http://survivethejourney.blogspot.com/2008/11/new-research-has-shown-cushings.html

* Dr. Karen Ternier Thames

🦓 Day 1: Cushing’s Awareness Challenge 2022

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April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

30-posts

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

 

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

 

 

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

Record a Video, Receive A Rarity T-Shirt!

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@happygirl – this looks perfect for you with all your videos!  If you or anyone else from the boards does this, please let me know :)

Help Rare Patient Voice spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As a thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card.

Follow these steps to record and submit your own video!

 

Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!

https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice

 

Step 2: Download the Storyvine app from the App Store or Google Play

Step 3: Film and upload your video!

To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Natalie of California, our January 3 raffle winner! Our next raffle will be held in early February.

Basics: The Pituitary Gland: Small But Mighty

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The pituitary gland works hard to keep you healthy, doing everything from ensuring proper bone and muscle growth to helping nursing mothers produce milk for their babies. Its functionality is even more remarkable when you consider the gland is the size of a pea.

“The pituitary is commonly referred to as the ‘master’ gland because it does so many important jobs in the body,” says Karen Frankwich, MD, a board-certified endocrinologist at Mission Hospital. “Not only does the pituitary make its own hormones, but it also triggers hormone production in other glands. The pituitary is aided in its job by the hypothalamus. This part of the brain is situated above the pituitary, and sends messages to the gland on when to release or stimulate production of necessary hormones.”

These hormones include:

  • Growth hormone, for healthy bone and muscle mass
  • Thyroid-stimulating hormone, which signals the thyroid to produce its hormones that govern metabolism and the body’s nervous system, among others
  • Follicle-stimulating and luteinizing hormones for healthy reproductive systems (including ovarian egg development in women and sperm formation in men, as well as estrogen and testosterone production)
  • Prolactin, for breast milk production in nursing mothers
  • Adrenocorticotropin (ACTH), which prompts the adrenal glands to produce the stress hormone cortisol. The proper amount of cortisol helps the body adapt to stressful situations by affecting the immune and nervous systems, blood sugar levels, blood pressure and metabolism.
  • Antidiuretic (ADH), which helps the kidneys control urine levels
  • Oxytocin, which can stimulate labor in pregnant women

The work of the pituitary gland can be affected by non-cancerous tumors called adenomas. “These tumors can affect hormone production, so you have too little or too much of a certain hormone,” Dr. Frankwich says. “Larger tumors that are more than 1 centimeter, called macroadenomas, can also put pressure on the area surrounding the gland, which can lead to vision problems and headaches. Because symptoms can vary depending on the hormone that is affected by a tumor, or sometimes there are no symptoms, adenomas can be difficult to pinpoint. General symptoms can include nausea, weight loss or gain, sluggishness or weakness, and changes in menstruation for women and sex drive for men.”

If there’s a suspected tumor, a doctor will usually run tests on a patient’s blood and urine, and possibly order a brain-imaging scan. An endocrinologist can help guide a patient on the best course of treatment, which could consist of surgery, medication, radiation therapy or careful monitoring of the tumor if it hasn’t caused major disruption.

“The pituitary gland is integral to a healthy, well-functioning body in so many ways,” Dr. Frankwich says. “It may not be a major organ you think about much, but it’s important to know how it works, and how it touches on so many aspects of your health.”

Adapted from http://www.stjhs.org/HealthCalling/2016/December/The-Pituitary-Gland-Small-but-Mighty.aspx

Thoughts? Share on the message boards.

Record a Video and Receive Rarity the Zebra!

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Please help us spread the word to other patients and caregivers about Rare Patient Voice by submitting a short video about your experience with us. Using the Storyvine app, recording a video on your phone is quick, easy, and fun! Videos will be featured on our website, on social media, and in newsletters.

Check out and join the growing group of RPV patients and caregivers who have recorded stories! https://rarepatientvoice.com#sharevoice

Follow these steps to record and submit your own video!

Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!

https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice

Step 2: Download the Storyvine app from the App Store or Google Play

Step 3: Film and upload your video!

To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Stacy of South Carolina, our December 1 raffle winner! Our next raffle will be held in early January.

💉 Helpful Neurosurgeon: Pennsylvania

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Lehigh Valley, Pa.,
March 03, 2021

Walter Jean, MD, has joined Lehigh Valley Health Network (LVHN) and will serve as Chief of Neurosurgery.

Jean is a board-certified neurosurgeon with expertise in complex intracranial surgery. He is known world-wide for his expertise in complex brain surgery. With nearly 20 years’ experience in both open and endoscopic skull base surgery, Jean has several clinical interests including acoustic neuromas, pituitary adenomas, skull base meningioma, intraventricular tumors, and trigeminal neuralgia. His acclaimed textbook, “Skull Base Surgery: Strategies,” is used by neurosurgeons across the globe to learn about open and endoscopic skull base surgery.

“I’m excited to join LVHN and continue to build on their solid foundation,” Jean says. “I hope to take LVHN Neurosurgery to the next level with robust clinical activity, research and innovation as well as education.”

As a pioneer, Jean utilizes virtual reality in neurosurgery.

“Virtual reality allows everyday people to fly to new lands in video games, augmented reality takes fighter pilots through scenarios training them for the unexpected,” Jean says. “Now brain surgeons and patients can also use these technologies to fly through the brain.”

Why is this so important? Jean says for those who find themselves in need of complex brain surgery, not only can they better visualize their upcoming procedure, their surgeon also gains additional insight. Jean is the only physician in the area using this groundbreaking technology.

“We meet hundreds of patients and explain to them our surgical plan,” Jean says. “That communication can be difficult at times. Once we have a patient’s brain scans loaded into the augmented reality software, they have the ability to see their own anatomy to gain a better understanding. When patients place the headset over their eyes, they are transported to a virtual replica of their own brain.”

The experience offers a visual explanation which is often easier to understand than medical terminology.

Another benefit of this leading-edge technology is that it allows brain surgeons create a surgery plan by simulating different scenarios to find the best approach. “The genesis of the technology is from air fighter pilots. The founders of the company discovered they could use the same technology in the medical field,” Jean says. “Just like fighter pilots, brain surgeons are able to practice unique scenarios to be fully prepared for their mission.”

Jean comes to LVHN from George Washington University Hospital, where he was a professor of neurological surgery. A native of Hong Kong, Jean attended Princeton University, where he graduated summa cum laude, and Cornell University Medical College, where he graduated at the top of his class and was elected Alpha Omega Alpha, a medical honor society. He completed neurosurgical training at the University of Minnesota, and fellowship in Skull Base Surgery at the University of Cincinnati.

Jean’s academic credentials includes being Program Director at Georgetown University for 7 years. He has authored numerous scholarly publications and has an international reputation as an energetic lecturer and passionate teacher of neurosurgery. Jean serves as reviewer for many high-impact journals such as the Journal of Neuro-Oncology, World Neurosurgery, Operative Neurosurgery, and Journal of Neurological Surgery, Part B. He is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons and the North American Skull Base Society and serves frequently as faculty at their national meetings.