Interview with Stephanie – PCOS, Possibly Cushing’s Patient

interview

The next interview on BlogTalk Radio will be Wednesday, April 22 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.

Steph has a bio posted here: http://cushingsbios.com/2015/04/16/stephanie-steph-undiagnosed-bio/

The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 82 other past interviews to listen to!

In her bio, Steph writes:

Hi. My name Steph, and this has been a long journey for me so far, and I see a long road ahead. Hopefully their will be a rainbow once all these clouds have melted away.

I just turned 33 years old (this month) and have been dealing with symptoms of Cushing’s since I was a pre-teen without even knowing it. I was diagnosed (or possibly mis-diagnosed) with PCOS when I was about 11. That’s when the irregular (to almost non-existent) menstrual cycles, hirutism (chin, upper lip, upper and lower thighs, fingers, toes, basically everywhere) and weight problems began. I was immediately put on birth control to regulate my periods, which only made my life a living nightmare. They forced on a fake (non-ovulating) period and made my moods a disaster. I went on to be on birth control until from the age of 11 until about 3 years ago when I just couldn’t take it anymore, and took myself off. I’ve been using herbal supplements for menstrual regulalation since then, and feel MUCH better.

Over the years I’ve always felt like there was something “more than PCOS” wrong with me. From the extreme inability to lose weight normally, and the ease to gain it, to the weak legs, vitamen d insuffeciency, high cholesterol, high blood pressure, extreme irritability, now non-existent cycle, shortness of breath (just from walking up 1 flight of stairs), slow healing, hoarse voice, high testosterone, male pattern baldness, blurry vision, EXTREME brain fog etc….. It has been very, very, very tough and emotional over the years. It has taken a toll on my personality, emotions, and those around me….

The way that I found out about cushing’s is rather unique. I was on a popular PCOS message board site called “soul cysters”, and I have always been EXTREMELY self conscience of my round puffy face, and was wondering if it could be a side effect of PCOS. So I searched Puffy face on the message board to see if others on the board had experienced it, and sure enough Cushing’s came up, and a suprising number of women either had both (cushing’s and PCOS) or had been mis-diagnosed, which apparently is very common with cushing’s. it was like a gigantic light bulb went off in my head when I started googling cushings symptoms. All these things that I have been experiencing almost my entire life started coming together. I’m really not crazy!! Everything is possibly related. Im almost 100% sure that this is it!!! I don’t know if this is a good or bad thing, as I see that cushing’s is curable in most cases, but it is also scary, and diagnosing it seems like hell!!

I have began my -already slow- journey to diagnosis. And, the the Dr.’s don’t seem to be all that well informed. However, I am DETERMINED. I am excited at the thought of possibly being able to get my life back through surgery or meds. I went to a well respected Endo in my area, and she is gonna test all of my hormones, including my cortisol level. Though she didn’t seem to be too informed on Cushing’s when I brought it up, along with my “dead ringer” symptoms. I’m going to a pulmonologist on the 29th as suggested by my GP (who also thinks I have cushings, but admits he’s not well informed enough or equipped to diagnose). I’m also going to an OBGYN soon (tried going to one today, and had to walk out because it was such a bad experience). But I am determined to get 2nd, 3rd, and however many opinions are needed until I am satisfied.

Also, on a side note, possibly having cushing’s, along with having PCOS, has made me look at the doctors and the medical profession as a whole in a different light. I feel like if you find a genuinely good doctor who listens, cares, takes you seriously, and is willing to test you without question, and work with you, your levels, and your symptoms, you are blessed!! I have had so many doctors try to push meds down my throat (for their own pockets/greed obviously) when it wasn’t needed or necessary without hesitation or question. And, then when I tell them that the medicine is affecting me adversely, they just tell me to keep taking it! It’s sad and ridiculous. I’ve had to learn to do my own research, know my own body well, and trust my own judgement…..

I will be praying for myself and everyone on this message board who has had to deal with this horrific symptoms over the years.

Updates coming…..

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Ways to “Give Back”

Now that Cushing’s Awareness Month is almost upon us, here are some ways to help spreading awareness.

How can YOU help spread the word?

  • We always need people to be interviewed in the BlogTalk Interview series.  These interviews usually take place on Thursday nights at 7:30PM Eastern but you can do this at any time that’s convenient for you.

If you’re interested in being interviewed, there is more information here.  You can sign up by checking off the box on the Add Your Bio form, sending an email to MaryO, posting in this topic on the boards or filling out this form.

You do not need to be diagnosed to be interviewed!

Spread The Word! Cushing’s Pocket Reference

Robin Writes:

This has been a concern of mine for some time. Your post spurred me on to do something I’ve been meaning to do. I’ve designed something you can print that will fit on the business cards you can buy just about anywhere (Wal-mart included). You can also print on stiff paper and cut with a paper cutter or scissors. I’ve done a front and a back.

Cushing's Pocket Reference

Here are the links  (NOTE:  The phone number is correct on the images above but incorrect on the links below and will be fixed soon):

Front: This card is being presented by a person who cares.
Back (The same for everyone)

This Topic on the Message Boards

 

 

Cushing’s Awareness Day! April 8, 2015

What Can *YOU* Do to help?

Ways to Give Back… in no particular order:

    • Endocrine Society News – Cushing’s as Cover Story!ENLetters@endo-society.org to send a letter to the editor. Some will be published and the doctors (endos!) who read this will get the patient’s eye view.
    • Participate on the message boards and help support others, especially newcomers. If you see a post with no, or few responses, say something so that the person doesn’t feel like they’re being ignored. I’ve noticed that many people here are very good at this 🙂
    • If you’ve had successful surgery, stick around to offer hope to those who come after. Far too many cured Cushies leave, and present an unbalanced look of life after Cushing’s.
    • Add (or update) your bio.
    • Attend the chats.
    • Offer to talk to others offline.
    • Send cards or little notes to others who are hurting– either online, or through snailmail. There are some free eCards available through Hallmark, Bluemountain, many places. If you don’t know someone’s email address for an eCard, you can send it to yourself, get the link (URL) when it comes to you and paste that into a PM for the person.
    • Use the “Tell a Friend” links on any page to share it with someone who would be interested.
    • Be a board moderator.
    • Visit other Cushies in the hospital, or go with them to doctor appointments. Call them when you know that they’re “down” – or happy!
    • Print your own Cushing’s brochures. These work best on tri-fold brochure paper.
    • Print some brochures and pass them out to doctors, Weight Watchers and other similar meetings, people who look Cushie. There are also Cushings-Help business cards available.
    • Wear your Cushing’s Awareness bracelet or pin often and tell everyone what it means.
    • If someone asks how you’re doing, explain Cushing’s to them, at least a simple version! I’ve been doing this with my piano students and parents – they’re finally getting it!
    • Submit your Helpful Doctor info – we need all the good doctors we can get.
    • Submit any Helpful Books you may have read – we need all the info we can get.
    • Attend meetings, be involved
    • Help Jayne get Cushing’s Awareness Day enacted.
    • Get a Cushing’s Awareness Silicone Bracelet – or two! These are are made from 100% silicone, and are stronger and longer lasting than rubber bracelets. Reminderband works closely with the production facility to guarantee that quality is consistent in all sizes and colors. To ensure that we are producing the highest quality silicone bracelets on the market, the Reminderband team conducts ongoing production tests and research. Rest assured, Reminderbandis second to none.
    • Design your own awareness bands.
    • Participate in The Clothes Closet, the book project
    • Someday, maybe you’ll meet a Cushie without a computer. Offer to print out helpful pages for him/her, or invite her over to check out your computer. Invite him to a local meeting, or give her the number to call for more info.
    • Help someone fill out insurance or disability forms.
    • Ask someone how you could help them.
    • Share your good news – it spreads like wildfire!
    • Pray, or send healing thoughts, to those who need them
    • Post relevant News Items that may help someone else.

Thank you for your contribution to the Cushing’s Help and Support Community!

When I started Cushings-Help.com, it was my intention to make it a place for all to receive much needed free help and support. That is still my intention; however, these costs keep mounting, so you now have the option of making a donation to help with the running of these websites. If you are satisfied with our support, information and/or the help you receive here, please consider making a donation. Your donation will help to offset the costs of keeping these sites online and free to all who need them.

To register and participate in any of the Cushing’s Help and Support websites and services is free. However, it is through the generosity of our members that these sites remains free. Members who choose to “subscribe” or “donate” help keep the website fees paid so that the thousands of members can enjoy the support offered.

Your donation helps with the upkeep of the seven sites in the Cushing’s Help family, cushings-help.com, addisons-help.com, cushings-support.com, cushings-info.com, cushings.invisionzone.com/ [message boards], cushie.info and cushingsonline.com; the message boards, the CushieWiki, podcasts, chatrooms and much more.

Any size donation will be much appreciated.

Please Help Keep Cushing’s Help and Support Running!

Donate to Please Help Keep Cushings Help Running!

 

Thank you so much for your donation!

  • Sign Amber’s Petition. www.ipetitions.com/petition/CushingsDiseaseAwarenessAmber writes:

    Thought I would explain what this petition can do….First of all, it adds power and substance to our efforts to have a Nationally recognized day if we have an extensive, following.

    Second, this petition and all the signatures can be printed and sent to a Senator, politician, or medical professional that may be will to take on the cause.

    Third, this petition and its list of signatures are IDEAL for releasing to the press and media for coverage and will assist GREATLY in getting the word out there.

    It is so simple. The petition has a place to add your name and a comment if you want. PLEASE take a moment to sign and formward it on to all the people in your address book, your friends and family.

    We all get forwarded messages all the time, but this one is dear to our hearts and can make a differnce! WHATS STOPPING YOU!?

    PLEASE SUPPORT OUT EFFORTS TO RAISE AWARENESS! YOUR HELP IS NEEDED AND IT IS SO EASY!

  • CherylF suggests:

    I contacted Senator Inhofe’s (OK) office recently, and he is happy to reintroduce the Cushings Awareness Day Resolution for April 8, 2007.Please contact your US Senator’s office and ask them to support this Resolution. I’m not sure when Senator Inhofe will try and contact other senators but if you send a letter soon, and call your senator to let him know your letter is coming, and that Senator Inhofe is going to reintroduce the Resolution, it will truly help.

    Last year the Resolution was introduced, but to my understanding, only one senator-another from Oklahoma was the only one to contact Senator Inhofe’s (Okla) office to co-sponsor the Resolution.

    If you send a letter requesting it, you might also request that a reply be sent back to you . Please try to send the letter in the next two weeks if possible.

    Last year we had a small Conference in OKC celebrating the passing of the Resolution, and there is some information on that conference on the CUSH website (CUSH.org), and I believe on this one as well. We won’t be having a specific conference in OKC, but ask that you bring awareness in your own states, communities as you can. Last year a TV station in OKC aired a small segment about the conference & Cushings Awareness Day, as did one in Nebraska- with Autumn as the contact person.

    As the OK CUSH rep as well, I might have something for those around the OK area, a small get together if anyone is interested…more like a dinner or luncheon so we can visit each other. You can always contact me for more info if you’d like…together we can make a difference!
    Thank you in advance, Cheryl Farrar- CUSH Vice President

  • Contact your Senator Print out a sample letter to send to your congress person or senator or download it in Word format.More information here
  • Follow Jayne’s Lead. She writes:

    Of course, I’ll be supporting the day and writing letters and emails and making phone calls. I hope to find us a celebrity ribbon wearer. Something else I am working on is national TV recognition with the major networks and National publications. You can email them as well on their “contact us” info. Contact the hosts of the show and the producers to mention April 8th and Cushing’s Awareness.I am going to find out information on getting money (grant) to publish magazine adds/articles for the April editions, if not this year then for next year. I know they are probably being printed, but I just thought of this idea. My local paper will run a small 2×3 ad for starting at $300. I want the whole page! I thought about having a yard sale to raise money to put in an ad, but doubt that I’d make enough. Oh Well!

    Something else I thought about is getting a chain pharmacy to post cushings info for that week prior to the 8th. Medical school journal/papers can also be contacted. I know I must have emails over 100 doctors last year on the 7th (once I know that it had passed). I’ll be setting up a booth at the women’s Forum again this year. I hope to set up at some health expo’s and at the local Hospital or at least make/pass out flyers.

  • Wear Cushing’s Bracelets or T-Shirts to promote Cushing’s Awareness. Cushing’s Awareness T-Shirts and other products are available here: Cushie GiftStore.  Also check out Robin’s Cushie Store.
  • Post your ideas and what you have done here:http://cushings.invisionzone.com/index.php?showtopic=19173

2006:

For Immediate Release:

April 6, 2006

INHOFE DESIGNATES ‘NATIONAL
CUSHING’S SYNDROME AWARENESS DAY

More info here


April 8, 2006, the Cushing’s Understanding, Support & Help Organization (CUSH) petitioned in the USA to have April 8 be declared as Cushing’s Awareness Day. This date was chosen because it was Dr. Harvey Cushing’s Birthday. More info here


The Cushing’s Awareness Day Proclamation, fromhttp://thomas.loc.gov/cgi-bin/query/z?c109:S.RES.423:

Designating April 8, 2006, as `National Cushing’s Syndrome Awareness Day’. (Agreed to by Senate)

More info here

Interview with Stacy, Mom to Possible Cushing’s Patient

Stacy writes in her bio

MacKenna is my daughter.  I am in desperate need of assistance regarding her weight.

She is 6 years old and weighs about 95 pounds.  At four, she was normal to underweight.

First clue – she gained 10 pounds in three months.  Of course doctor’s wanted a food log …. however, as her parent, I knew something was wrong.

So much to say, I NEED to help my baby and am hoping someone on this board can point me to a good pedi endo (I am currently on my second).  I have pictures to show the progression of her changes.  Her growth pattern is abnormal as she does not gain height while she gains weight and vice versa.

I believe it is cyclical cushings.  And if it isn’t, I still need help as this is going to kill her – her little frame cannot hold much more.

 

McKenna’s mom will be interviewed June 11 at 6:00 pm eastern in BlogTalkRadio.  Archives will be available later in the Cushing’s Podcast.

Interview May 7 with Kathy C, Pituitary Patient

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.

Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.

Kathy will be interviewed May 7, 2014 in BlogTalkRadio

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Cushing’s Awareness Challenge 16

robin-support

That’s for sure!  Cushing’s patients have a lot of support these days, at least online.  I’m not seeing much offline in the way of regular group support meetings.

Over the years, there have been lots of local meetings but they’re mostly one-time events.  There are pictures of some of the past meetings here: https://www.facebook.com/CushingsInfo/photos_albums listed by place and date.

Many Cushing’s patients on the message boards and in Facebook groups exchange phone numbers and email addresses to get offline support.

Other ways to help support others you may never meet are to agree to be interviewed in a live voice chat (these are added to the podcast for later listening) or submit a bio.

The more you share, the more support others get…and the more they’ll share with you.

 

 

maryo colorful zebra

 

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