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MaryO

What Can *you* Do To Help?

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As a result of a message I posted a couple weeks ago, several people have asked me what they can do to help out with the running of the message boards and the websites in general. Several people suggested that I put a link on every page to the area where money could be donated to help defray the growing costs of these sites.

 

I'm hesitant to do that, because I don't want anyone to feel pressured into feeling like they have to pay anything to be a member here, or use any of the features. I've given this a lot of thought over the last week or so and have come up with several other ways to help out. That's what is listed at the top of every page here now: Give Back

 

The first, tentative, list is included below. If you have other suggestions, please post them here and I'll add them to the list.

 

Ways to Give Back... in no particular order:

  • 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 :blink:
  • 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 this site, 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.
  • Add a review of this website.
  • 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!
  • Get some CUSH 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 pin often and tell everyone what it means.
  • Participate in the CUSH Register.
  • 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.
  • Join CUSH, attend meetings, be involved
  • Help Jayne get Cushing's Awareness Day enacted.
  • Participate in the Clothes Closet, the book project, the Cookbook 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 toll-free number (877-825-0128} 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.
  • Help people who ask questions in the InstaChat. Refer them to the boards or other places on the site.
  • Use iGive.com when you buy things online; buy books using the links on the book pages; tshirts and such from the giftstore. Then WEAR those tshirts!
  • If you see on the Calendar that today is someone's birthday, or surgery anniversary or other special event, please acknowledge that on the boards.

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

 

Many thanks to those of you who have sent in donations. They're greatly appreciated!

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Mary, I love each and every one of those ideas. Almost all are totally doable by even those of us who are sick. I will step up my helping as of now.

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Mary,

Thank you so much for these ideas...sometimes we think about doing things and get side tracked for one reason or another.

Tonight I found myself very sad and crying and decided to get on the boards to see what was going on....and I found that this first post helped me tremendously.

I know what they say is true, that you can find yourself when you loose yourself in service, and that's what this board is, one of the ultimate services to others.

Thank you so much for your kindness and the tremendous help that you give others. Love, Cheryl F

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Thanks for the time and thought you put into those suggestions, Mary. They are good ideas, all of them.

 

I don't know how to send an e-card. (not great with computers). When I clicked on your link, Mary, most of the page was white. My computer is having some problems right now, so it could be a difficulty just I am having.

 

Sending thoughts of appreciation and also hugs! :wub::wub::wub:

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Hi Mary,

 

I can't praise you enough for this wonderful site and I sing your praises and those of other people on this site to most Doctors that I meet here in the UK. If there is anything I can do here then I will. Hopefully one day some of us UK cushies can meet you all. Until then I'll keep posting and you have certainly given me some other ideas on the list. I always said once I had the op and was cured I wouldn't turn my back on other people suffering and that promise still stands.

 

Love to you all.

 

Diane

x

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Another idea. Check out the Endocrine Society Newsletter post on the boards at http://boards.cushings-interactive.com/inv...t=11981&p=97479

 

The cover story was Cushing's. A letter to the editor thanking them for highlighting Cushing's would be a good idea. Email ENLetters@endo-society.org to send a letter to the editor. Maybe some would be published and the doctors (endos!) who read this could get the patient's eye view.

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Hi MaryO, everyone. To share good news I am finally getting a recliner and a laptop. I hope to keep my swelling down that restricts my internet usage so so much. So I can help. I am totally housebound and just now giving up my apartment to live with my mom. i was alone for 1 1/2 years and that's about all I can take. I am having adrenal crises just from havign teeth [cushings! grr] pulled and have gained 60 lbs in water. I have a good doctor after firing my last one and Dr. Ludlam is my excellent endo on call. I am lucky but doing worse than ever for tapering.

Point is i cant go out attend meetings or do anything and i never have been able to. But i can help online as i used to if i can keep the swelling under control with the laptop and recliner. I dont cant even sleep in a bed i sleep in a couch and i cant roll over or sit up easily do am REALLY looking forward to my chair. Maybe I can do so much more again as i used to, so far back nobody remembers but i used to have so much to give so much to help with.

 

Its hard being the only cushie so sick from just steroids and still on so much so many. Theres a new diagnoses coming out just now that ive always had which is an extreme resistance to and sensitivty to steroids. Steroid Withdrawal Syndrome is what theyre calling it. I crash like anyone else... as if i had a tumor. I mostly have a good attitude still but i am angry and go thru a lot of mental angst because of my decline and been out of work for 6 years still fighting for social security, still fighting to keep my hips from breaking.

 

I can email and thats about it. I am worried about our MaryO and want to help and some of these on the list I know i can do and more and more until i can really make a difference again well thats my goal. I hope my freedome with a laptop and chair will help. The chair was only 450.00 total and i hope i dont tip it over with my weight but its extra large. We shall see. We said we'd shore it up with boards if need be!

 

Id love the talk to cushies more on the phone i have free call plan in USA and CANADA 24/7. So as soon as i am more stable... if i am ever out of the wooods so tp speak gosh i miss giving back. All i can do is take from my mom and friends i have nothing to give at the moment but i think of you all with so much love and compassion.

 

And MaryO, that nephrectomy was hard for me to recovr from and i was 17 at the time. So please take it easy and it and know it will take time for the muscles to work again and the sensation to come back. You're not alone!

 

My doctor is a self ascribed ENDO GEEK and it is possible she could help further our cause. I will keep it in mind...

 

Im working so hard to come back and get better. Im not giving up though so nobody else better either ya hear :)

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Ways to Give Back...

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

Many thanks to those of you who have sent in donations. 

Thanks for this list. I am new here. :) So I love having a check list of places to go/look at. Thanks!

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Welcome, roloschmfem - glad you found us here :)

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Brian, if you're looking for your post and response, I moved them here: http://cushings.invisionzone.com/index.php?/topic/52859-new-here/

 

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This website is amazing and has taught me so much about the disease I may have. In my 15 year old life, I have never come across such an informative website.

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Thank you so much, Selene - I am so sorry you have to deal with all this at such a young age, though :(

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Thanks Mary for reminding us of how we can help. I am new and unfortunately did't discover this site until recently. I had pituitary surgery in 3 April/2013 then 8 months later on 28 Nov/2013 had cancer surgery. I am back to normal and loving and living life doing all I did before. After surgery I had to have cortisol stimulation which was unsuccessful which means my body is in adrenal failure and I have to take prednisone for the rest of my life. Last week, I was 4 hours late in taking my prednisone and felt sick to my stomach and so weak I had to lean on things to stand up. I had never been told about the symptoms of adrenal crisis and learned about it on this site. I wasn't in adrenal crisis yet but this site taught me about the seriousness of my situation which had never been explained to me. My endo only told me to double up on my prednisone if I were sick, on antibiotics or under a great deal of stress. Thanks to you, I know now to be more diligent in taking my prednisone. Thanks Mary for the shout out about my book THE GREATEST LOVE STORY EVER. Writing it is my way of giving back to let people know how this disease effected my personal life and especially my 38 year marriage. I wanted people to see I was more than a disease and to understand how devastating Cushing's is to the sufferer.         

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I wasn't sure where to put this. Mary posted about my book, The Greatest Love Story Ever. But a friend asked my why was I writing this book. I told her because I want to make people aware of Cushing's, but she said my title, description and cover didn't show this and she was right. So I changed all. You can now find my story at www.wattpad.com - type in notSoCushy which is my alias. The New Title: No I"m Not Pregnant.   The description is: If I'm not pregnant then I have to be fat and lazy, right? How about sick? A sickness that makes you fat and so exhausted it's difficult to take even a few steps. I couldn't convince my doctor or husband of that, but I will convince you as you follow me through the cracks in live to discover I am a Cushie. The cover is a picture of me then. I am back to normal (lost 50 pounds and still loosing). Since recovering, people don't recognize me. This answered why I am writing, but I need to see the bigger picture. I need to know WHY DO YOU WANT ME TO WRITE IT???  What do you think needs telling? I'm supposed to put in tags so people can find me. Like if I was writing about war, I could use history as a tag. I need something people who know nothing about the disease could put in AND FIND ME. I really need your ideas and would appreciate your help. THANKS.    

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Hi All! Long time lurker first time poster! Haha. Fellow hard to diagnose, crazy symptom having Cushie here. Like the rest of you I wanted so badly to do something for our community. Every person I have met in the Cushing's support and awareness world is so kind, supporting and welcoming all while hurting. It makes me almost proud to be a part of it. Too bad we can't just be a group of awesome AND healthy people. I didn't know what to do with my tiny little voice in such a big community. I realized that I could help by sharing the tips and tricks I have learned to help mediate the physical aspects of the changes that come with Cushing's. So many times they go over looked because they are seen as unimportant in the grand scheme of things but feeling as beautiful as you actually are is so important.

 

I don't know if it's a no no to post a link to an outside blog  here and if I am violating any rule I missed I am so so sorry.  I started a blog all about how to combat the acne, stretch marks, hair loss and all those sort of things. It's a super positive site all about hope and remembering how strong every single one of us in this battle is. The site is (and this is the part I don't know if i'm allowed to do) www.theclassycushie.com It's just beginning but has the support and backing of a few awareness campaigns so that's a big yay!  I would love it if people would be able to get some helpful information and am eager to here from the rest of the community any tips or tricks they have learned. It's a place to go when you need a boost and maybe some answers you haven't found on the "smaller" issues. I couldn't find any so I became my own test subject and I posted my own!

 

Mary, Kate Myers and Dr. F. (who I just started seeing and no idea the connection until it all collided) are my three wisemen (and women) that have motivated me, comforted me, and encouraged me without ever knowing it. I am hoping to give a bit of that back in the only way I know how.

 

Sooo, that's that. I hope just one person takes a peak and gets a break through in even the tiniest of areas. I admire my fellow Cushie's and their supporters so much! I'm finally brave enough to stop lurking and to be part of the gang haha

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Yes, it's ok to post non-commercial sites and blogs here :)

 

If you're interested, we're having our 30 Posts in 30 Days Challenge for Cushing's Awareness coming up in April.  The info about participating is here: http://cushieblog.com/2015/03/01/fourth-annual-cushings-awareness-challenge/

So far there are 14 folks giving it a try this year.  Just let me know if you'd like your blog added to the list!

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