Pituitary

Basics: Testing: Prolactin

MaryO Basic Info , , , ,
A prolactin (PRL) test measures how much of a hormone called prolactin you have in your blood. The hormone is made in your pituitary gland, which is located just below your brain.

When women are pregnant or have just given birth, their prolactin levels increase so they can make breast milk. But it’s possible to have high prolactin levels if you’re not pregnant, and even if you’re a man.

Your doctor may order a prolactin test when you report having the following symptoms:

For women

For men

  • Decreased sex drive
  • Difficulty in getting an erection
  • Breast tenderness or enlargement
  • Breast milk production (very rare)

For both

Causes of Abnormal Prolactin Levels

Normally, men and nonpregnant women have just small traces of prolactin in their blood. When you have high levels, this could be caused by:

Also, kidney disease, liver failure, and polycystic ovarian syndrome (a hormone imbalance that affects ovaries) all can affect the body’s ability to remove prolactin.

How the Test Is Done

You don’t need to make any special preparations for a prolactin test. You will get a blood sample taken at a lab or a hospital. A lab worker will insert a needle into a vein in your arm to take out a small amount of blood.

Some people feel just a little sting. Others might feel moderate pain and see slight bruising afterwards.

After a few days, you’ll get the results of your prolactin test in the form of a number.

The normal range for prolactin in your blood are:

  • Males: 2 to 18 nanograms per milliliter (ng/mL)
  • Nonpregnant females: 2 to 29 ng/mL
  • Pregnant females: 10 to 209 ng/mL

If Your Prolactin Levels Are High

If your value falls outside the normal range, this doesn’t automatically mean you have a problem. Sometimes the levels can be higher if you’ve eaten or were under a lot of stress when you got your blood test.

Also, what’s considered a normal range may be different depending on which lab your doctor uses.

If your levels are very high — up to 1,000 times the upper limit of what’s considered normal — this could be a sign that you have prolactinoma. This tumor is not cancer, and it is usually treated with medicine. In this case, your doctor may want you to get an MRI.You’ll lie inside a magnetic tube as the MRI device uses radio waves to put together a detailed image of your brain. It will show whether there’s a mass near your pituitary gland and, if so, how big it is.

If Your Levels Are Low

If your prolactin levels are below the normal range, this could mean your pituitary gland isn’t working at full steam. That’s known as hypopituitarism. Lower levels of prolactin usually do not need medical treatment.

Certain drugs can cause low levels of prolactin. They include:

Treatment

Not all cases of high prolactin levels need to be treated.

Your treatment will depend on the diagnosis. If it turns out to be a small prolactinoma or a cause can’t be found, your doctor may recommend no treatment at all.

In some cases, your doctor may prescribe medicine to lower prolactin levels. If you have a prolactinoma, the goal is to use medicine to reduce the size of the tumor and lower the amount of prolactin.

From https://www.webmd.com/a-to-z-guides/prolactin-test

 

Helpful Doctors: Dr. Sandeep Kunwar

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Dr. Sandeep Kunwar is an eminent neurosurgeon who serves on the PNA’s Board of Directors. He is surgical director of the California Center for Pituitary Disorders and a professor of neurosurgery at UCSF. He is also surgical director at the Taylor Bell Neuroscience Institute in the Washington Hospital Healthcare System in Fremont, CA. He opened his private practice there in 2006. He received a Bachelor of Arts degree from UC Berkeley in 1988. From 1991-2 he trained as a Howard Hughes Medical Institute Research Scholar at the National Cancer Institute, working in the laboratory of molecular biology. He went to graduate from UCSF medical school in 1993, did his residency there in neurological surgery in 1998, and joined the faculty upon completion in 1999. From 1997-98 he served as a Research Fellow in the Brain Tumor Research Center at UCSF. He was selected by renowned pituitary surgeon Dr. Charles Wilson to take over his practice upon retirement.

Dr. Kunwar specializes in gamma knife radiosurgery for metastatic and primary brain tumors, and uses the endonasal approach for pituitary tumors. His research works to improve surgical therapy for brain tumors, particularly glioblastomas. He has pioneered a minimally invasive surgical technique for skull-based tumors and has successfully applied that skill to transcranial and spine patients as well.
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He was kind enough to answer questions from the PNA. His responses follow.

• What inspired you to choose your career path?

My interest in the brain started after a personal experience. I developed amnesia after a fall when living in Chicago while in elementary school. This lead to my fascination in how memory was processed, how chemical reactions can tell us that 2+2=4. Later in life, inspired by my father who loved working with his hands, I realized that I had an interest in neurosurgery. After attending medical school and residency at the University of California, San Francisco, my research and clinical interest focused on brain tumors. I was fortunate to work closely with Dr. Charlie Wilson who inspired the pursuit of perfection and always doing what is best for the patient. It was under Dr. Wilson’s tutelage that I understood the power of hormonal health on an individual’s quality of life, the elegance of transsphenoidal surgery for pituitary pathology, and the impact a single surgeon can have. He instilled in me the concept that we must strive to do better. When he retired two decades ago, I committed myself to improving the treatment of pituitary tumors, honing not only my surgical skills (we started performing the endonasal transsphenoidal approach in 2001, eliminating the need for nasal packing and shortening the hospital stay to one day for most patients) but my understanding of hormonal health. Although I work with the best neuro-endocrinologists at UCSF, I tried to learn as much as they know to best help my patients.

• What is the primary focus of your work/research?

My main work focus has been the treatment of pituitary tumors, in improving the outcomes and decreasing the complications. For example, we have worked on techniques to maintain or improve pituitary hormonal function. The goal of preserving the thinned out, damaged gland that remains is as important as curing/treating a tumor. This includes using multimodal therapy if needed to optimize a patient ‘s normal hormonal health. In the end, these are benign tumors and the results of treatment should never be worse than the disease. We need to minimize/eliminate the risks of damaging the gland (including diabetes insipidus), meningitis, and CSF leaks; and maximize our chance of curing the tumor. Finally, it is imperative to pass these skill sets to the next generation of surgeons.

• What do you consider to be the future of your field?

In the short term, the risks of surgery will decrease and the options for multimodal therapy will increase. For example, we will see better drugs to control hormonal hypersecretion, more focused and readily available ways to give radiation therapy (radiosurgery), and more uniform outcomes among different centers/surgeons. In the long run, I hope we can regenerate normal pituitary function in those patients that have lost their function because of their tumor or treatment.

• What should patients know about your field/what deserves more recognition/awareness?

The PNA has done an excellent job in educating patients about the importance of experience and multidisciplinary groups in the management of pituitary pathology. The greatest impact in outcome is technique and experience. Unfortunately, the tools used to perform surgery have become a focus for some. This has become a marketing tool which can confuse patients and detract from the main issues which are the surgeon’s experience/outcomes and the goals of treatment.

What deserves continued recognition is early diagnosis. The key to improving outcomes for all patients in the future is early diagnosis. It was this goal that made PNA so appealing to me. With early diagnosis, cure is easier to achieve, preservation of the normal gland function is more readily possible and the overall impact of hormone abnormalities can be limited.

• What would you like to convey about yourself to your patients?

There are many very talented and accomplished neurosurgeons, perhaps fewer spectacular pituitary-specific surgeons. It is important to choose a surgeon with experience and one who understands pituitary pathology, one who can explain his or her goals, outcomes and complications and most importantly, one you feel comfortable with. I’ve had the great honor to operate on over 2,500 pituitary patients. For each, it remains the best part of my job to take time to educate them about their disease, the cause of their symptoms, the anatomy of their tumor and our goals in treating their pathology. Maximizing cure must always be balanced with minimizing risk, and having a great team to help support the process are the key to success. I would thank all the patients who have put their faith in me – it is an honor and a privilege to be part of their care.

• Why did you get involved with the PNA; what is the extent of your involvement?

Education remains the most powerful tool in improving health, and that has been on the forefront of the PNA. I got involved with the PNA because of my respect and admiration for Robert Knutzen back in 2004. I served on the board early on and have contributed to the educational information available. I fully support the PNA’s focus on patient education and in improving earlier diagnosis.

From https://pituitary.org/highlights-enewsletter-child/pna-spotlight-dr-sandeep-kunwar-2-2-2-2-2-2-2-2-2-2/

Basics: The Role of Endocrinology in Managing Polycystic Ovary Syndrome and Diabetes

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Introduction to Endocrinology

Endocrinology is a medical specialty that focuses on the diagnosis and treatment of diseases related to hormones. Endocrinologists are experts in managing and treating diseases related to the endocrine system, which includes the thyroid, pituitary, adrenal glands, and pancreas. Endocrinologists are trained to diagnose and treat conditions such as diabetes, thyroid disorders, pituitary disorders, and other conditions related to hormones. Endocrinologists also specialize in reproductive health and fertility issues, including PCOS.

Endocrinology is a complex field that requires a deep understanding of the endocrine system and its role in regulating the body’s hormones. Endocrinologists must be able to interpret laboratory tests and understand the underlying causes of endocrine disorders. They must also be able to develop individualized treatment plans to address the specific needs of each patient.

Diagnosing PCOS and Diabetes

Endocrinologists are experts in diagnosing and managing PCOS and diabetes. PCOS is a hormonal disorder that affects the ovaries, and it is characterized by irregular menstrual cycles, excess facial and body hair, and infertility. To diagnose PCOS, an endocrinologist will perform a physical exam and order laboratory tests to measure hormone levels. The endocrinologist will also ask the patient about her symptoms and family history to determine if PCOS is the cause.

Diabetes is a chronic condition that affects the body’s ability to process sugar. To diagnose diabetes, an endocrinologist will perform a physical exam and order laboratory tests to measure blood sugar levels. The endocrinologist may also order imaging tests to check for signs of diabetes-related complications.

Treating PCOS and Diabetes

Once the endocrinologist has diagnosed PCOS or diabetes, they will develop an individualized treatment plan to address the patient’s specific needs. For PCOS, the endocrinologist may recommend lifestyle changes such as weight loss, exercise, and dietary changes to help manage symptoms. The endocrinologist may also prescribe medications to regulate hormone levels and improve fertility.

For diabetes, the endocrinologist may recommend lifestyle changes such as weight loss, exercise, and dietary changes to help manage blood sugar levels. The endocrinologist may also prescribe medications to help regulate blood sugar levels. In addition, the endocrinologist may recommend regular check-ups to monitor the patient’s progress and to adjust the treatment plan if needed.

Conclusion

Endocrinology plays an important role in managing PCOS and diabetes. Endocrinologists are experts in diagnosing and treating these conditions, and they are trained to develop individualized treatment plans that address the specific needs of each patient. By working with an endocrinologist, patients can get the help they need to manage their PCOS or diabetes and achieve their health goals.

Endocrinology is a complex field that requires a deep understanding of the endocrine system and its role in regulating the body’s hormones. An endocrinologist can help patients with PCOS and diabetes manage their conditions and achieve their health goals. By working with an endocrinologist, patients can get the help they need to manage their PCOS or diabetes and achieve their health goals.

From https://www.diabetesincontrol.com/the-role-of-endocrinology-in-managing-polycystic-ovary-syndrome-and-diabetes/

🎬 Video: Taylor Davis Spreads Awareness about Cushing’s Disease

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FLORENCE, SC (WBTW) – 21-year-old Taylor Davis, spent nearly three years battling a mysterious illness called Cushing’s Disease.

“I could barely walk to class anymore. I was in pain. I gained like 70 pounds, despite extreme dieting and exercising,” said Davis.

When Davis enrolled into her spring semester classes at USC, she started experiencing several symptoms.

“I noticed my grades started to take a fall and I was like ok something is seriously wrong here because I’ve never had trouble in school and I could stay up studying all night long and not remember anything the next day,” said Davis.

Davis went from doctor to doctor, but no one could figure out what was wrong with her.

“I thought I was going crazy. Every doctor would say keep trying to diet and exercise and we’ll get you on some medication for your depression and your anxiety,” said Davis.

After dropping out of USC and spending time in the emergency room, a Cushing’s Disease Facebook group led her to a research doctor in California.

“Around October is when the doctor officially diagnosed me and within a month I had my brain surgery scheduled,” said Davis.

Fast forward a couple months later, Davis is thankful to share her experiences on social media and help others going through the same disease.

“I post about it all the time and by using the hashtags for Cushing’s disease, I probably get three to four messages a day from people all over the world. I’ve had people message me in Spanish and I have to use google translate to try and help them,” said Davis.

From https://www.wbtw.com/news/a-woman-in-the-pee-dee-spreads-awareness-on-mysterious-disease/

💉 Helpful Doctors: North Carolina

MaryO Five Star, Helpful Doctors, North Carolina , , , ,

 

Sherry A added her helpful doctor, Matthew Gorris.

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Dr. Matthew Gorris
Your Doctor’s Address Medical Center Boulevard
City: Winston Salem
State / Province: NC
Postal / Zip Code: 27157
Your Doctor’s Phone Number (336) 713-7251
What are your Doctor’s Specialties? Endocrinologist
Hospital Affiliation Wake Forest Baptist Medical Center
Comments Excellent Doctor, Takes his time, actively listens to his patients concerns and addresses questions in an easy to understand manner.

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💉 Helpful Doctors: Washington, D.C.

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Someone on Facebook her helpful doctor, Dr. Susmeeta Tewari Sharma.

 

 

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Dr. Susmeeta Tewari Sharma
Your Doctor’s Address
110 Irving Street Northwest
GROUND FL.
Suite NW

Washington, DC 20010
Your Doctor’s Phone Number 301-774-8962
What are your Doctor’s Specialties? Many, including Addison’s and Cushing’s.  See this list.

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ℹ️ Reasons You or Your Friend or Family Member Should See Dr. Friedman

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Refer a friend or family member to see Dr. Friedman as a new patient and get a $50 voucher for your next appointment.

Here is a list of reasons you or your friend or family member should see Dr. Friedman

  1. Dr. Friedman thinks outside the box, as willing to look beyond standard testing and treatment approaches.
  2. Dr. Friedman is an expert in pituitary, thyroid and adrenal issues as well as several other endocrine conditions, while most endocrinologists specialize in diabetes or just thyroid disease.
  3. Dr. Friedman has seen and diagnosed more patients with Cushing’s disease, growth hormone deficiency or adrenal insufficiency in a month than most Endocrinologists see in a lifetime.
  4.  Dr. Friedman is well-trained and knows the Endocrine literature well
  5. Dr. Friedman is not beholden to protocols that many university-based Endocrinologists need to follow
  6. Dr. Friedman listens and cares.
  7. Dr. Friedman works with you and not against you
  8. A new patient who wants to be seen by Dr. Friedman can usually get in within a few weeks as opposed to months for other Endocrinologists that are booking out several months.
  9. Dr. Friedman uses conventional medicines, compounded medicines and supplements to optimize your health.
  10. Dr. Friedman works with several compounding pharmacies that prescribes weight loss medications so you can lose weight while you get your hormones optimized.
  11. Dr. Friedman believes should learn all about their health and provides scientific, yet easy to understand articles to help educate his patients.
  12. Dr. Friedman has hired extra staff members, so your needs are addressed in a timely manner.

For more information go to Dr. Friedman’s website https://www.goodhormonehealth.com or contact his office at mail@goodhormonehealth.com.

ℹ️ Cushing Syndrome and Hormone Disorders

MaryO Basic Info , , , , , , ,

MaryO’Note:  This is really basic information.  Maybe News 9 should have checked with a doctor who has actually been diagnosed with Cushing’s or at least tested for it!

~~~~~~~~~~~~~~~~~~~~~~~

In our Daily Dose, a viewer is asking about hormone problems that can cause your face to become round. Dr.  Lacy Anderson  joined News 9 to explain how some hormone disorders, like Cushing syndrome work.

Cushing’s syndrome is a rare disorder caused by the body making too much cortisol over a long period of time. It can be caused by a tumor of the adrenal gland, which makes cortisol, or it can be caused by a tumor of the pituitary gland, which controls the adrenal gland.

Cushing’s syndrome can cause a rounded face, known as a moon face. It can cause weight gain and fat deposits on the upper back, known as a buffalo hump. It can also cause stretch marks on the abdomen. It can cause high blood pressure, and high blood sugar, and increase the risk of cataracts and osteoporosis. Occasionally, Cushing’s syndrome can be caused by long-term, high-dose steroid use.

For pituitary or adrenal tumors, surgery can cure this condition. I’ve had several patients wanting me to check their cortisol levels recently, so this condition may have hit social media feeds, but I’ve never diagnosed Cushing’s syndrome because it’s so rare. I can usually take one look at my patients and reassure them that they don’t have Cushing’s syndrome.

Stay healthy and take care!

A video is included in the article at https://www.news9.com/story/6658b8f860ad19ad44c6da8f/daily-dose:-cushing-syndrome–hormones-disorders

🦓 Day 29, Cushing’s Awareness Challenge

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invisible

 

I’ve been thinking about this since the article I posted on doctors not understanding what it was like for a post-op Cushing’s disease patient – ME!  I’m updating this for Cushings Awareness Month 2025.

I originally posted this on Facebook way back in 2010.

Edits from November 21, 2015 are in blue italic
Edits from September 25, 2023 are in red italic
Edits from February 29, 2024 are in green italic
Edits from April 2025 are in purple italic

November 21, 2010 at 6:31pm

I really liked Jessica’s list, so I decided to make one of my own.  I was looking in my blog for what I wrote already about Psalm 116 and found out that I already did a very similar list in September 2009.  Talk about bad memory!

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Cushing’s Disease and kidney cancer (renal cell carcinoma). I also have secondary adrenal insufficiency as well as a growth hormone deficiency. I had pituitary surgery on November 3, 1987 and had my kidney cancer (kidney and adrenal gland) removed May 9, 2006.  Having my adrenal gland removed acerbates my post-op pituitary issues. My one remaining adrenal gland doesn’t work well and I cannot replace my deficient growth hormone because I had cancer.

November 21, 2015:  I haven’t added anything much to this list – HOORAY!  OTOH, nothing has gone away, either.  

A couple days/nights a month, I have unexplained, random itching.  It could be on my foot, then jump to my stomach, then anywhere. It keeps me awake at night and is very annoying.  I originally had this in menopause and I’m very annoyed that it has come back.

I mentioned this to my endo last year because of the possibility of “hormone withdrawal” and he said I should probably talk to my PCP about this, and that it could be “serious”.  I haven’t yet because I don’t like the possibility of tracking down some other dread, unknown disease.  According to that great doctor, Wikipedia: 

Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as pesticide exposure, mercury poisoning, diabetic neuropathy, skin cancer, syphilis, Lyme disease or herpes zoster (shingles). Formication can also be a result of stimulant intoxication (e.g. methamphetamines, cocaine) or alcohol withdrawal in alcoholics (i.e. delirium tremens), and is often accompanied by visual hallucinations of insects.

Also, I’ve been having terrible swelling, and pain in my left ring finger.  I will see my PCP about that on Wednesday after having this for about 8 months or so.  I looked up the possibilities on Dr. Google and there are too many to contemplate.  I hope it’s not arthritis.  I already know I can’t take meds for that.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

In March of 2023 I had a total left knee replacement after many steroid injections and one series of hyaluronic acid.  I documented all that in another of my blogs. I am expecting to do the right knee possibly in the fall of 2024 but I’m putting it off as long as possible.

February 3, 2025 I had a total right knee replacement.  It was “easier than the left but I developed an allergy to something which is yet unknown and I had a terrible itch rash for about a month.

2. I was diagnosed with Cushing’s in the year: 1985; adrenal insufficiency in 1999; GH deficiency in 2004 and kidney cancer in 2006.

November 21, 2015:  Somehow, I forgot that I was diagnosed with osteoarthritis in the early 1980’s and took NSAIDs for about 30 years.  Those are another kidney cancer no-no.

In April of 2021 I had a Mohs Surgery for Squamous Cell Carcinoma.  A description and photos are available here: https://maryomedical.com/2021/05/09/the-mohs-nose/

 

3. But I had Cushing’s symptoms since: 1983 for sure.  Looking back, I can trace some other symptoms to the 1970s.

 

4. The biggest adjustment I’ve had to make is: Sleeping so much.  When I say I have to sleep, that’s it, no matter where I am, no matter what I’m doing.  From the cancer – not being able to take my arthritis meds.

 

5. Most people assume: I am completely healthy.  I had surgery, so everything is fine.  I am, however, lazy.

 

6. The hardest part about mornings are: getting up.  I could sleep until at least noon if I didn’t have an alarm AND something specific to do.  It’s also hard to get my joints so they work.  Sometimes I have a hard time standing.  I have a footed cane beside the bed to help me get up.

November 21, 2015:  I seem to be getting up earlier.  I have an issue with a joint on my ring finger, left hand.  It often throbs at night and wakes me up.

2023-2024, I seem to be waking up about 1 or so.  I guess because my 2-3 hour naps, my body is treating bedtime as just another nap.

2024-2025. I’m waking up about 3 and doing some online work, then napping for about 30 minutes to an hour until my alarm goes off at 9

7. My favorite medical TV show is: House.  I started watching it because an episode about Cushing’s was loosely based on a Cushie I know.

November 21, 2015:  House doesn’t seem to be on anymore so I no longer have a favorite medical TV show.

 

8. A gadget I couldn’t live without is: Wow, so many. My iPhone is the main one with a few others very close.

November 21, 2015:  iPad now.

 

9. The hardest part about nights are: Staying asleep.  I’m always tired but I often have to get up to go the the bathroom.  Then, I often have trouble getting back to sleep.

November 21, 2015:  Dreams, some scary, some that just play like endless loops until I get up.  I still get up for the bathroom, too. Pain, sometimes that itching. 

 

10. Each day I take __ pills & vitamins: Not much.  I only take Cortef and lisinopril/HCTZ.  I used to take a lot of other meds but, due to having only one kidney, I can’t take much of anything, including vitamin C, aspirin and NSAIDs.  I pray I don’t get headaches anymore!

November 21, 2015:  Nowadays, it’s only the Cortef.
If absolutely necessary, I take Alavert for allergies and Benadryl if I’m in an itchy pattern; Tylenol for headaches.  

Because of the cancer, I can’t take Growth Hormone any more.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

 

11. Regarding alternative treatments I: have to clear anything I take or do with my kidney cancer surgeon so it’s easier to just not take anything.

 

12. If I had to choose between an invisible illness or visible I would choose: What I have.  While I wish people would understand better, I don’t want anyone to feel pity or single me out.

 

13. Regarding working and career: I’ve been fortunate – I’ve been a piano teacher forever and I can control my hours to get in naps when I need them.  I could not work a 40-hour job.

November 21, 2015:  I still teach piano, although it’s hard to play now due to that joint issue.  I also am webmaster for my church, for my husband’s company and the Cushing’s sites.  I also inherited my friend’s menopause site when she died.  So, there’s a lot of stuff to do, but I can still work naps in.  I still could not work a normal work day.

September 25, 2023 – I still teach piano, am the Director of Communications for my church and keep the Cushing’s sites going – sort of.  I still take a lot of naps.

 

14. People would be surprised to know: that I have trouble dealing with so many things.

 

15. The hardest thing to accept about my new reality has been: that I can’t be the Energizer Bunny any more.  No project days where lots of stuff gets done.

 

16. Something I never thought I could do with my illness that I did was: start a website and support group to help others.

 

17. The commercials about my illness: NONE!

 

18. Something I really miss doing since I was diagnosed is: I miss Sweet Adelines.  I loved the singing, the dressing up in sequins and false eyelashes to sing before huge crowds.  Almost like being on Broadway.  I also miss playing violin in a local orchestra.

January 2024, I bought a silent e-violin so I can start practicing again without bothering my 100-year-old mom. In March I joined a balalaika orchestra!

In 2025 I’m sill playing with the balalaika orchestra

19. It was really hard to have to give up:my arthritis meds.

 

20. A new hobby I have taken up since my diagnosis is: Naps, sleeping.

 

21. If I could have one day of feeling normal again I would: I cannot even imagine.  I could join a gym again, although for only one day it wouldn’t do much.  I could commit to doing something in the afternoons without napping before.  I could get some of my house tidied up…

 

22. My illness has taught me: a lot about hormones, glands, medical terms and… HTML.  I almost think I could have gone to med school if I’d had the stamina.

 

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, my friend’s dog (or cat/horse/ferret) had that [Cushing’s].  The vet just gave the dog some pills and she was fine.  GRRRRRRRRRRRRRRRRR!

 

24. But I love it when people: listen to me when I try to tell them a bit about Cushing’s, even if it is a dumbed-down version.

February 15-16, 2024 I had the opportunity to be in both Fair Oaks Emergency Room and the hospital in Fairfax, VA.

Whenever a nurse/medical tech mentioned steroids, I asked what they knew about Cushing’s. One asked if it was a medication. DUH!

Needless to say, none were very Cushing’s-savvy. So, I gave them all the abbreviated version of my Cushie Story.

I think (and hope!) that they will all remember the day that they met a real live Cushing’s patient.. 

My left knee surgey was supposed to be in early January 2025 but it was snowed out.  Because it was rescheduled for more than a month later, I had to redo some testing.  I was amazed that the doctor in the walk-in clinic knew about Cushing’s although she’d never met a real one in the wild.  I spent a lot of time talking to her.

25. My favorite motto, scripture, quote that gets me through tough times is:

Psalms 116:

“1 I love the LORD, for he heard my voice;he heard my cry for mercy.

 

2 Because he turned his ear to me, I will call on him as long as I live.

 

3 The cords of death entangled me,the anguish of the grave came upon me;I was overcome by trouble and sorrow.

 

4 Then I called on the name of the LORD:”O LORD, save me!”

 

5 The LORD is gracious and righteous;our God is full of compassion.

 

6 The LORD protects the simplehearted;when I was in great need, he saved me….”

 

After I was finished with the long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

 

I thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever. When I read this Psalm aloud, I just started crying, it so spoke to me and my situation.

 

Another reading I love is:The Best Day Of My Life by Gregory M Lousignont

 

“Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

 

Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

 

I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

 

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.

 

Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

 

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.

 

I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

 

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

 

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!”

 

When I’m feeling down, depressed or low, reading this and “my” Psalm can help me more than anything else.

 

26. When someone is diagnosed I’d like to tell them: Learn everything you can about your disease.  You know more about your body than anyone else.  If your doctor tells you something that you know to be wrong about *you* – get another doctor!  Don’t waste your life getting good care for yourself.

 

27. Something that has surprised me about living with an illness is: how intolerant other people can be and the discrimination that I have run into, such as not being included in some activity just because my physical limitations would make it inconvenient for them to deal with accommodating me.

 

28. The nicest thing someone did for me when I wasn’t feeling well was: trying to understand that I wasn’t just fat and lazy, I really had medical issues going on.

 

29. I’m involved with Invisible Illness Week because: I like people to know that just because someone looks healthy, they may not be.  There are lots of people out there with invisible illnesses who need understanding, compassion and, possibly, help.

 

30. The fact that you read this list makes me feel: like you’re really interested.

 

The 2009 version was pretty close!

Thanks for being interested enough to read this!

🦓 Day 25, Cushing’s Awareness Challenge

MaryO Cushing's Awareness Challenge , , , , , , , , , , , , , , , , , , ,

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.