Interview May 13 with Michelle B (MichelleB), Cyclic Cushing’s Patient

Hello all, I’m Michelle mother of 3 beautiful children, I work part-time, 33yrs young, non-smoker, non-drinker, overall health is good for the most part…..Where do I even begin.

I just recently received the diagnosis of cyclic Cushing’s. I’m not really sure how long I have actually had Cushing’s because I have had a diagnosis of PCOS since I was 17 yrs. old ( I’m now the ripe young age of 33). However looking back through labs with my endocrinologist who I see every 6 months, my ACTH levels have been elevated for a bit over 1 yr. It was not until recently January of 2015- things were going terribly wrong.

Starting in January I started to feel genuinely unwell, on a regular basis. I cant really explain all my symptoms there were so many different sensations and feelings that were seemingly different daily. However the red flag was I was having blood pressure spikes from really high, to very low back to back. I never had any blood pressure issues so this was a concern that led me to see a cardiologist. Upon tons of testing the cardio MD felt that something was telling my otherwise very healthy heart to do this and I should see a endocrinologist. (thank goodness for him) I contacted my endo and let him know…. the testing began.

I did every test: the midnightcortisol saliva test, dex suppression, 24 hr urine test, CRH stimulation testing. And I did them more than once. Each time it was a different response either, inconclusive, normal high, or high. I was then referred to the head of the Cleveland clinics pituitary department Dr. Kennedy. He said he is having a hard time believing when he looks at me that its Cushing’s. However all my labs say it is. I will say I do fit the mold of PCOS to a tee- which symptoms of that do coincide with Cushing’s but he still said we have to be sure its Cushing’s. To add to the mix I did have a normal MRI as well.

Dr. Kennedy started me on a 2 week midnight cortisol saliva test- Upon completion we noted levels of cortisol all over the place, some Normal, normal on high range, high, and really high. He confirmed with all the other tests this is Cushing’s. Now we are trying to figure out what is next…. and where is this damn little tumor at. he feels that it is most likely in the pituitary from my test results, but we still are not ruling out else where. He is thinking that the next step would be exploratory neurosurgery or the IPSS. I’m not sure what to think of all this, except I want to hope for the best like everyone- and just be cured!!

On a side note during all of this I also had episodes of severe pain in my chest and nausea. I went to see a GI who did an upper endo scope. They found I had eosinpphilic esophagitis. I also have never had any GI problems until now; and they came on suddenly. Im also having pain in my pancreas area- not sure if any of the two are related at all to Cushing’s. But once again I was fine until recently with all these issues at once it seems.

wish me luck on further testing, treatment, and ultimately a CURE!!

interview

Michelle was our guest in an interview on BlogTalk Radio  Wednesday, May 13, 2015.

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. There are currently 83 other past interviews for your listening pleasure!

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TO BE RESCHEDULED! Interview with Stephanie – PCOS, Possibly Cushing’s Patient

interview

The next interview on BlogTalk Radio will be rescheduled.  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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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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Day Seventeen, Cushing’s Awareness Challenge 2015

I wrote parts of this in 2008, so all the “yesterdays” and “last weeks” are a little off.  There is no way that yesterday was the best day of my life.  Possibly, the day I wrote this post was the only one…

Wow.  That’s about all I can say.  Yesterday was possibly the best day of my life since I started getting Cushing’s symptoms, and that was over 25 years ago.  A quarter of a century of feeling exhausted, fatigued.  A quarter of my life spent taking naps and sleeping.

Last week  in this post I wrote in part:

I went to the endo yesterday.  Nothing has changed for me.  Nothing will.  He wants me to take more cortef.  I don’t want to gain weight again.  He looked up Provigil and it’s not indicated for panhypopituitarism.  So he won’t prescribe it.  My kidney surgeon probably won’t let me take, anyway, but it was worth a try.

He did mention that in “only” 2.5 years maybe I can go back on growth hormone.  I don’t want to live like this another year let alone 2.5.  But then, when I was on GH before it didn’t help me like it helps most everyone else.

I’m tired of catering to a kidney that may or may not fail sometime anyway, tired of being so exhausted all the time.  I feel like I’ve lost nearly half my life to this Cushing’s stuff already.

So, yesterday I was supposed to go to a conference on web design for churches.  My church sent me because they want me to spiff up their site and make them a new one for Christmas.  I wanted to go because, well, I like learning new stuff about the web.  I figured that I would learn stuff that would also be useful to me in others of my sites.

And I did!

But the amazing thing is this.  My son had told me  about a medication that was very similar to Provigil, that he had tried it while he was writing his doctoral thesis and it had helped him.

So, having tried the official doctor route and being rebuffed – again – I had decided to try this stuff on my own.

Just the night before I had written a response on Robin’s wonderful blog that reads in part:

I hate this disease, too.

I was just talking to a friend today about how I’d try nearly anything – even if it ruined my one remaining kidney – to have a few days where I felt good, normal, where I could wake up in the morning rested and be able to have energy for the day.

I want to go out and have fun, to be able to drive for more than 45 minutes without needing to rest, to be have people over for dinner, whatever. I hate being restricted by my lack of energy.

My endo says to cheer up. In two and a half years I can try the growth hormone again. Whoopee. Didn’t work the first time and maybe gave me, or contributed to, cancer growth. Why would I want to look forward to trying that again?

I want to feel good now. Today.

I hate that this disease kills but I also hate that it’s robbed me of half my life already.

I wish doctors would understand that even though we’ve “survived”, there’s no quality of life there.

I hate Cushing’s. It robs so much from so many of us. 😦

As I said earlier, I have a history of daily naps of at least 3 hours a day.  It cuts into everything and prevents me from doing many things.  I have to schedule my life around these naps and it’s awful.

rockford-2006-sue 12-18-2006 2-09-18 pmA few years ago I went on a Cushie trip to Rockford.  I’ve been there a few times and it’s always so much fun.  But this first year, we were going to another Cushie’s home for barbecue.  I didn’t drive, I rested in the back of the car during the drive.  We got there and I managed to stay awake for a little while.  Them I put my head down on the dining room table and fell asleep. Our hostess kindly suggested that I move over to the sofa.

So, I have a long history of daily naps, not getting through the day, yadda, yadda.

So, I was a little nervous about yesterday.  I really wanted to go to this conference, and was afraid I’d have to go nap in my car.

I got up at 5:30 am yesterday.  Before I left at 7:15, I took my Cortef and then I took my non-FDA approved simulated Provigil.  (Although it’s not FDA approved, it is not illegal to possess without a prescription and can be imported privately by citizens)

I stayed awake for the whole conference, went to a bell rehearsal, did Stacey’s interview, had dinner and went to bed about 10:30PM.  NO NAP!  I did close my eyes a little during the 4:00PM session but it was also b-o-r-i-n-g.

I stayed awake, I enjoyed myself, I learned stuff, I participated in conversations (completely unlike shy me!).

I felt like I think normal people feel.  I was amazed.  Half my life wasted and I finally (thank you Michael!) had a good day.

My kidney doctor and my endo would probably be appalled but it’s about time that I had some life again!  Maybe in another 25 years, I’ll take another pill.  LOL


Well, the energy from the Adrafinil was a one day thing.  I felt great on Thursday.   Friday and Saturday I slept more than usual.  Saturday, today, was one of those days where I sleep nearly all day.  Maybe if I took the drug more it would build up in my system, maybe not.  But it was still worth having that one day where I felt what I imagine normal to be.

While I was being a slug today, my husband painted the entire house.

I’m not sure if I would have been this tired today or if I was somehow making up for the nap I didn’t get on Thursday.  Whatever the case, I’m glad that I had the opportunity to try this and to experience the wonderful effects, if only for one day.

Information from a site that sells this:

Alertness Without Stimulation

Adrafinil is the prototype of a new class of smart drug – the eugeroics (ie, “good arousal”) designed to promote vigilance and alertness. Developed by the French pharmaceutical company Lafon Laboratories, adrafinil (brand name, Olmifon) has been approved in many European countries for treating narcolepsy, a condition characterized by excessive daytime sleepiness and other unusual symptoms.

Non-narcoleptic users generally find that adrafinil gives them increased energy and reduces fatigue, while improving cognitive function, mental focus, concentration, and memory. It has been reported that quiet people who take adrafinil become more talkative, reserved people become more open, and passive people become more active.

Of course, many stimulant drugs, ranging from caffeine to methamphetamine, are known to produce similar alerting/energizing effects. Adrafinil has been described by some users as a “kinder, gentler” stimulant, because it provides these benefits but usually with much less of the anxiety, agitation, insomnia, associated with conventional stimulants.

Adrafinil’s effects are more subtle than those of the stimulants you may be used to, building over a period of days to months. They appear to be based on its ability to selectively stimulate 1-adrenergic receptors in the brain.2 These receptors normally respond to norepinephrine (noradrenaline), a neurotransmitter linked to alertness, learning, and memory. This is in contrast to conventional stimulants, which stimulate a broader spectrum of brain receptors, including those involving dopamine. Its more focused activity profile may account for adrafinil’s relative lack of adverse side effects.

There’s more info about Adrafinil on Wikipedia

It’s interesting that that snipped report that people become more talkative.  I reported that in the original post, too, even though I didn’t realize that this was a possibility.

A good quote that I wish I could relate to better:

“Time is limited, so I better wake up every morning fresh and know that I have just one chance to live this particular day right, and to string my days together into a life of action and purpose.”

Lance Armstrong (1971 – )
Cyclist, seven-time Tour de France champion and cancer survivor


Newer stuff starts here:

Awhile ago I went to a handbell festival. I took a bit of adrafinil on the main day to try to stay awake for the whole day. It didn’t seem to keep me as on as it did before. I can’t be used to it already. Maybe I’m just that much more tired than I was before.

Our son lives in New York and every few years he gives us tickets to see a Broadway show.  A couple years ago we took the train to NY to see Wicked.  Usually my DH wants to go out and see sights while we’re there.  I usually want to nap.

This time we got up on Saturday morning, went out for breakfast.  I wanted to take in the whole day and enjoy Wicked so I took some Adrafinil.  We got back to the hotel and got ready to go to a museum or other point of interest.

But, DH wanted to rest a bit first.  Then our son closed his eyes for a bit…

So, I found myself the only one awake for the afternoon.  They both work up in time for the show…

Sigh  It was a great show, though.

 

A recent Christmas I was going to get my son some Adrafinil as a gift.  The original place we bought it didn’t have any more stock so I tracked it down as a surprise.  He was going to give me some, as well, but couldn’t get it from the original source, either.  So he found something very similar called Modafinil.  GMTA!

 

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

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