🦓 Day 17: Cushing’s Awareness Challenge 2019

I used to carry a print out of this everywhere I go because I find it very soothing.  This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Fifteen of the 2018 Cushing’s Challenge.

These days, both these readings are available on my phone and iPad.

I first read this in Chicken Soup for the Surviving Soul and is posted several places online.

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 my 2 special pages can help me more than anything else.

 

🦓 Day 16: Cushing’s Awareness Challenge 2019

So often during the diagnosis phase of Cushing’s I felt 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 Twenty-nine, 2016)

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 15: Cushing’s Awareness Challenge 2019

Blue and Yellow – we have those colors on ribbons, websites, T-shirts, Cushing’s Awareness Challenge logos and even cars.

This is the yellow PT cruiser I had rented for the Columbus, OH meeting in 2007.  I didn’t ask for yellow.  That’s just what the rental company gave me.  Somehow, they knew.

This meeting is the one when we all met at Hoggy’s for dinner although some of us travelers stayed at this hotel.

I’m the one in yellow and blue.

Later in 2007, I bought my own truly Cushie Car.  I even managed to get a butterfly on the tags.

So, where did all this blue and yellow come from, anyway?  The answer is so easy and without any thought that it will amaze you!

In July of 2000, I was talking with my dear friend Alice, who ran a wonderful menopause site, Power Surge.  We wondered why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that maybe I could.

This website (http://www.cushings-help.com) first went “live” July 21, 2000.  It was a one-page bit of information about Cushing’s.  Nothing fancy.  No message boards, no blogs, no wiki, no image galleries…  Certainly no Cushing’s Awareness Challenges.

I didn’t know much about HTML (yet!) but I knew a little from what Alice had taught me and I used on my music studio site.  I didn’t want to put as much work <COUGH!> into the Cushing’s site as I had on the music studio site so I used a now-defunct  WYSIWYG (What You See Is What You Get) web editor called Microsoft FrontPage.

One of their standard templates was – you guessed it! – blue and yellow.

TaDa!  Instant Cushie color scheme forever.  Turns out that the HTML that this software churned out was really awful and had to be entirely redone as the site grew.  But the colors stuck.

Now, in this day of mobile web browsers and people going online on their cellphones, the website is being redone yet again.  But the colors are still, and always, blue and yellow.

 

 

⁉️ Cushing’s Myths and Facts: It is MY fault that I got Cushing’s…

Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick! If I would have just done XYZ, this would not be happening to me!”

myth-busted

Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth. We NEED to dispel this myth my friends! Patients themselves assume responsibility, accountability, and self blame for becoming ill.

To compound all of that, patients are often told by loved ones, family, and sometimes even their churches or other supports that there is something that THEY could be doing or haven’t done that has caused their declining health. “If you would just follow that raw food diet, then all of your symptoms would go away”, “Juicing is the answer! I told you to juice and you wouldn’t get those tumors!”, Sometimes, you are told that if you would just pray harder or have greater faith, then there is no way that you would be sick right now. And my absolute favorite, “you are just too obsessed with being sick and having Cushing’s!  Stop thinking that you have it and it will go away!”.

Now, don’t get me wrong, I find value in “positive thinking” and affirming health, wealth, and all kinds of great things. This helps build up strength and personally keeps me motivated, especially during the times that I feel like absolutely throwing in the towel and giving up!

However, I am NOT the reason and YOU are not the reason for this war with this dreadful disease. What many people don’t understand is how tenacious, brave, courageous, and INDOMITABLE you are! Cushing’s patients do not just get surgery and then everything is magically OK.

Many patients have to go through multiple surgeries, sometimes radiation, sometimes years of testing to find the ultimate source of the disease, even after having several organs messed with. Even after patients obtain their “cure”, they are faced with residual and lingering negative effects of the illness, other hormone dysregulation issues, and the anxiety and fear of a recurrence which is based in absolute reality.

There are people, like myself, who are in remission from Cushing’s, BUT we now have Addison’s Disease/Adrenal Insufficiency as a result of removing vital organs in order to save our lives from Cushing’s. So, are we to think that Adrenal Insufficiency is ALSO our faults every time we near death after an adrenal crisis?! NO! NO! NO!

This is NOT your fault! This is NOT your doing! STOP blaming yourself! The best you can do is to FIGHT! Take an empowered stance by saying “NO” to those who won’t listen. Say “NO” to those who project blame onto you and tell you that this is just a “fat person’s excuse to stay fat”. You are not just a “fat person”! YOU are an amazing person who is fighting for your life!

Let me be clear that this blaming is common and we all do it. In my “5 stages of Loss” series on Youtube; I address the “Bargaining” stage of loss, in which we assume responsibility for getting sick or even for getting better.

Everyone should watch this to understand why and how we do this:

Remember, you are a survivor! YOU are Indomitable!!! This is NOT your fault! You WILL overcome!

🎤 Archived Interview: Karen Nolan, Cyclic Cushing’s, part 2

 

Karen (Rooon55), part 2, March 20, 2008. Karen’s disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing’s, Thyroid disease, GH deficiency, and Autoimmune Alopecia. She believes she is cured after two Pituitary surgeries. A doctor didn’t advise Vermont’s Karen Nolan (Rooon on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing’s disease – another Cushing’s patient did.

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🦓 Day 12: Cushing’s Awareness Challenge 2019

In March of 1987, after the endo finally confirmed that I had Cushing’s, I was sent to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer floor.

When I left this hospital after a week, we didn’t know any more than we had before, except I found out that my brain cancer roommate had died.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a French-speaking hospital in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection.

My husband asked my endo if it were his wife, if he would recommend this surgery.  The endo responded that he was divorcing his wife – he didn’t care what happened to her.  Oh, my!

I chose NIH – closest and free. After I was interviewed by the doctors there, I got a letter that I had been accepted into the clinical trial.

The night before I was admitted, I signed my will.  I was sure I was going to die at NIH.  If not during testing, as a result of surgery.  The scary this is that I didn’t really care.  I’d rather take this chance than continue to live with Cushing’s.

The first time I was there was for 6 weeks as an inpatient. More of the same tests, except for one that they don’t do anymore.  I guess it didn’t really work for Cushing’s.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were going bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Several were from Greece.

My first roommate was a nurse.  She spent the entire first night screaming in pain.  I was very glad when they moved me to a new room!

Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with – either a cure or dying. While I was at NIH, I was gaining about a pound a day!

During the time I was home the weekend before surgery, a college classmate of mine (I didn’t know her) DID die at NIH of a Cushing’s related problem. I’m so glad I didn’t find out until reading the alumnae magazine a couple months later!  She was the same class, same major, same hometown, same disease…

We have a Scottish doctor named James Lind to thank for the clinical trial.  He conducted the first-ever clinical trial in 1747 and developed the theory that citrus fruits cured scurvy.  Lind compared the effects of various different acidic substances, ranging from vinegar to cider, on groups of afflicted sailors, and found that the group who were given oranges and lemons had largely recovered from scurvy after 6 days.

I’d like to think that I advanced the knowledge of Cushing’s at least a little bit by being a guinea pig in 1987-1989.

From the NIH: http://endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx

Hope through Research

Several components of the National Institutes of Health (NIH) conduct and support research on Cushing’s syndrome and other disorders of the endocrine system, including the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke, the National Cancer Institute, and the National Center for Research Resources.

NIH-supported scientists are conducting intensive research into the normal and abnormal function of the major endocrine glands and the many hormones of the endocrine system. Researchers continue to study the effects of excess cortisol, including its effect on brain structure and function. To refine the diagnostic process, studies are underway to assess the accuracy of existing screening tests and the effectiveness of new imaging techniques to evaluate patients with ectopic ACTH syndrome. Researchers are also investigating jugular vein sampling as a less invasive alternative to petrosal sinus sampling. Research into treatment options includes study of a new drug to treat the symptoms of Cushing’s syndrome caused by ectopic ACTH secretion.

Studies are underway to understand the causes of benign endocrine tumor formation, such as those that cause most cases of Cushing’s syndrome. In a few pituitary adenomas, specific gene defects have been identified and may provide important clues to understanding tumor formation. Endocrine factors may also play a role. Increasing evidence suggests that tumor formation is a multistep process. Understanding the basis of Cushing’s syndrome will yield new approaches to therapy.

The NIH supports research related to Cushing’s syndrome at medical centers throughout the United States. Scientists are also treating patients with Cushing’s syndrome at the NIH Clinical Center in Bethesda, MD. Physicians who are interested in referring an adult patient may contact Lynnette Nieman, M.D., at NICHD, 10 Center Drive, Room 1-3140, Bethesda, MD 20892-1109, or by phone at 301-496-8935. Physicians interested in referring a child or adolescent may contact Constantine Stratakis, M.D., D.Sc., at NICHD, 10 Center Drive, Room 1-3330, Bethesda, MD 20892-1103, or by phone at 301-402-1998.

🦓 Day 11: Cushing’s Awareness Challenge 2019

UVA 2004
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos!

As early as 2001 (or before) my pituitary function was dropping.  My former endo tested annually but did nothing to help me with the symptoms.

In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.  Needless to say, I left his office in tears, again.

Fast forward 2 years to 2004.  I had tried for a while to get my records from this endo. He wouldn’t send them, even at doctors’ or my requests.

I wanted to go see Dr. Vance at UVa but I had no records so she wouldn’t see me until I could get them.

Finally, my husband went to the former endo’s office and threatened him with a court order. The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001 including weeks and weeks at NIH and pituitary surgery, that didn’t seem like enough records to me.

In April of 2004, many of us from the message boards went to the UVa Pituitary Days Convention. That’s where the picture above comes in.  Other pictures from that convention are here.

By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me later. In the email, she asked how I was doing. Usually, I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests (ITT). From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 17 years! I was amazed to hear all this and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I went back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He said that I would end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, in November 2004, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we had to appeal on Monday. My local insurance person also worked on an appeal, but the whole thing was just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving.

As it turned out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Was I going to be a guinea pig again?

The new GH company assigned a rep for me, submitted info to the pharmacy, and waited for insurance approval, again.

I finally started the Growth Hormone December 7, 2004.

Was the hassle and 3 year wait worth it?  Stay tuned for April 24, 2018, when all will be revealed.  Quick answer: NO!

Read Dr. Barbara Craven’s Guest Chat, October 27, 2004

Thanks for reading 🙂

MaryO

🦓 Day 10: Cushing’s Awareness Challenge 2019

The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:

Egads!  I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.

Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…

Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and specialty blood tests…

The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.

 

🎤 Archived Interview: JenS discussed Bilateral Adrenalectomy (BLA)

 

Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.

She was diagnosed by Dr. Theodore Friedman as cyclical pituitary Cushings.

Her second Surgery 7/21/04 for infection resulted in neuralgia. She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson’s syndrome. Jen also has Thyroid Issues (Hashimoto’s, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006)

Listen at http://www.blogtalkradio.com/cushingshelp/2008/02/29/jens-discusses-bilateral-adrenalectomy-bla

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🦓 Day 9: Cushing’s Awareness Challenge 2019

The Seven Dwarves of Cushing's

So, the dwarves above have only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.

Here are some of the many areas affected.

  • Progressive obesity and skin changes
  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
  • Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

Women with Cushing’s syndrome may experience:

  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

  • Decreased libido
  • Decreased fertility
  • Erectile dysfunction

Other signs and symptoms include:

  • Fatigue
  • Muscle weakness
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Cognitive difficulties
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • Hyperlipidemia (elevated lipids – cholesterol – in the bloodstream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!