❣️ Happy 20th Birthday Cushing’s Help!

It’s unbelievable but the idea for Cushing’s Help and Support arrived 20 years ago late last night. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering 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 I could.

Thanks to a now-defunct Microsoft program called FrontPage, the first one-page “website” (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000.

All our Cushing’s-related sites:

 

❣️ We Are Nearly 20!

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 20 years ago tonight.  That’s a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering 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 I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!

The message boards are still active and we have a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

 

maryo colorful zebra

❓Can You Help?

Can someone please offer help, ive been suffering for a year and just got blood results today with a high cortisol reading. My doctor said that my contraceptive pill could have caused this, however, I am not on the regular pill but on the POP progesteron only pill.

Is anyone aware of if this raises cortisol levels the same way the regular combined pill does?

Any help would be so very much appreciated!

 

Please respond here, on the message boards, or in the original post.

 

Thanks!

❓Can You Help? Very Few Symptoms

A guest on the Cushing’s Help message boards asked:

I’ve been searching every possible alternative explanation. I really hoped I just had a Lipoma but GP was pretty confident no.

I’ve gained about 40lbs in the past year, I bruise easily and I have a Buffalo Hump. Cycle is regular, my mood is good, well ya know pandemic, home schooling, owning a business … Lol I don’t think I’m suffering any unusual stress or anxiety though. I am anxious over the time it’s taking to get any info.

I had blood drawn and an upcoming sono, date TBD, but don’t see my GP for 5 wks!

Can I get blood results over ph and skip right to Endocrinologist if Cortisol is high? Any input of speeding this along?

Anyone else with only a few symptoms?

Thanks!

 

Can you help Ellie out?  Please respond here or on the Message boards.

Thanks!

🖥 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 recently died.

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.

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.

 

❓Can You Help? Possible Cushing’s or Cortisol Issue

 

Hi wondered if anyone could help me out – been suffering with these symptoms lately and wondered if cortisol could be the issue

 

– Thinning legs

– Fat building in the trunk (abdomen and chest)

– Seemingly more fat under my chin

– Excessive fatigue even after a nights sleep

– Weak muscles – mainly back /arms and shoulders

– muscle wasting

– Feeling very low and anxious

 

Thanks in advance,


Can you help JT out?  Please respond here or on the Message boards.

Thanks!

❓Can You Help? Looking for Naturopath

A guest on the Cushing’s Help message boards asked:

Hi, anyone here able to recommend a naturopath who has been successful in getting Cushings under control? Thanks!

Please comment here and I will get your answers to Heidi or on the boards directly.

 

Thanks!

 

❓Can You Help? Normal Test Results

From the Message Boards:

My GP has suspected Cushings for a while now. I have the extreme fatigue, muscle weakness, round face, facial flushing, Buffalo hump, weight gain right in midsection – all the alleged tale-tell signs. However, I’ve had to urine tests and one blood test and they are always normal.

I’m seeing a third endo now and she agrees with my GP and plans to do another series of blood tests.

I guess my question is has anyone else out there ever had initial normal cortisol test results only to later find out it’s Cushings?

Please comment here and I will get your answers to Lizzy or on the boards directly.

 

Thanks!

🎤 Archived Interview: Symptoms and Diagnosis: Cushing’s Message Board Members

As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.

The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio

There are currently 89 interviews in our series.  This is the second one:

 

Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/10/cushings-members

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❓Guest Question: Legal Assistance for Cushing’s Patients

 

If you can help, please respond here or on the Message Boards.  Thanks!

I believe I need legal assistance related to i humane treatment by city and/or county officials. I can explain further, if need be, once I find out if it’s even possible to get help. And I certainly cannot afford to pay an attorney, since my income is SSD (Disability), which is low and fixed, which has been the case since Cushing’s reared it’s remorseless, destructive head in 2008. Is there any legal assistance fund set up for Cushing’s patients?