Day Twenty, Cushing's Awareness Challenge

This is one of the suggestions from the Cushing's Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy.  I've said it a thousand times - you know your own body better than any doctor will.  Most doctors have never seen a Cushing's patient, few ever will in the future.

If you believe you have Cushing's (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.

This is your life, your one and only shot (no pun intended!) at it.  Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online  and found a medical treatment that even his own doctors didn't know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

http://www.youtube.com/v/2vejkD0Rl3o

Day Fourteen, Cushing's Awareness Challenge

And today, we talk about pink jeeps and ziplines...

How in the world did we get here in a Cushing's Challenge?  I'm sliding these in because in Day Twelve I linked (possibly!) my growth hormone use as a cause of my cancer - and I took the GH due to Cushing's issues.  Clear?  LOL

 

I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006.  I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006.  My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.

 

I got out of the hospital on the day that they left for the cruise and realized that I wouldn't have been much (ANY!) fun and I wouldn't have had any.

An especially amusing thread from that cruise is The Adventures of Penelopee Cruise.  Someone had brought a UFC jug and  decorated her and had her pose around the ship.  The beginning text reads:

Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that's another story!

Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn't have enough spoons to do too much every day.

On the first day, she went sunning on the Libido deck......she didn't last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?

Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August, 2006.  I convinced everyone that I was well enough to go off-road in a pink jeep,  DH wanted to report me to my surgeon but I survived without to much pain and posed for the header image.

In 2009, I figured I have “extra years” since I survived the cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldn’t go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda.

Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.

We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldn’t get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn't. They also didn’t have cave pictures or T-Shirts. What a missed opportunity!

This was so cool, so much fun. I thought I might be afraid at first but I wasn’t. I just followed instructions and went.

Sometimes they told us to break. We did that with the right hand, which was always on the upper cable.

After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldn’t figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.

After that, no more problems with breaking!

The next platform was very high – over 70 feet in the air – and the climb up was difficult. It was very hot and the rocks were very uneven. I don’t know that I would have gotten to the next platform if Michael hadn’t cheered me on all the way.

We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.

But, I did it! No fear, just fun.

Enough of adventures - fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!

 

Day Seven, Cushing's Awareness Challenge

Sleep.  Naps.  Fatigue.  I still have them all.  I wrote on my bio in 1987 after my pituitary surgery "I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep."

That seems to be changing back, at least on the weekends.  Last weekend, both days, I took 7-hour naps each day and I woke up tired. That's awfully close to taking a whole day off to sleep again.

In 2006, I flew to Chicago, IL for a Cushing's weekend in Rockford.  Someone else drove us to Lake Geneva, Wisconsin for the day.  Too much travel, too Cushie, whatever, I was too tired to stay awake.  I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead.

This sleeping thing really impacts my life.  Between choir rehearsals, I come home for a 45-minute nap.  Sometimes, during adult choir rehearsals, I start to nod off anyway.

I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.

Maybe now that I'm more than 5 years out from my kidney cancer I can go back on Growth Hormone again.  My surgeon says he "thinks" it's ok.  I'm sort of afraid to ask my endo about it, though.  I want to feel better and get the benefits of the GH again but I dont want any type of cancer again and I certainly can't afford to lose another kidney.

I'm feeling so old and weary today...

 

Current Cushie Bloggers

Cushie Bloggers



Cushie Bloggers are a group of Cushing's patients, family members and friends, who are members of the Cushing's Help and Support Message Boards.

We don't always write about Cushing's because we have varied and interesting lives but the syndrome is always lurking behind the scenes, somewhere.

If you think that you might qualify as a Cushie Blogger but are not a member of the message boards for whatever reason, please email me with your blog information and we'll check it out to see if it can be included here.

Current Cushie Bloggers
ADDFlower: A Basket For My Case
I haven't posted anything in forever because I have a tumor in my pituitary gland. You read that right... I've named it Count Rugen....

Alicia: Hear hoofbeats, think Zebras
This is a blog, loosely based, on my experiences with Cushing's Disease; illness, recovery, and what lies between. It is more of a place where I can ramble on about what is on my mind, in the hopes of clearing my mind enough that I might sleep tonight.

Bev (BookYeti): My 'Court Case' Against Cushing's
Will Cushing's be guilty as charged? I will be finding out soon. I am still gathering evidence to fight my case and put this horrible disease on trial.

Brandon (jediknight36): The Weary Zebra- Cushing's Patient w/o Insurance
My journey to being diagnosed with Cushing's Syndrome and getting treated... with out insurance.

Christina (happygirl): Just Another Day in Paradise
A little of this and that from my world . . .

Danielle (Smilez133): Life With Cushing's
My journey through diagnosis and treatment of Cushing's Disease

DragonFlyJacquie.com: My Cushing's Journey
I am not sure exactly when my Cushing’s journey began. It is difficult to pinpoint when the disease took hold of my body as it is the type of disease that creeps up. The early symptoms are so vague and mimic so many other conditions that it is difficult to diagnose. I do know that I transformed into a whole other person who I did not recognize within a few years.

Ferol (FerolV): FerolV's Blog
Diagnosed with Cushings Disease in 05, after YEARS of mis-diagnosed symptoms, I want to share my experience with others.

Gracie (Fatnsassy): Another Day in the Life of a Train Wreck
Why did I pick this title? Well, that's what I feel like most days! I wake up wondering if anyone seen the license of what hit me!...

Jenny (jennyr): Waking up from an Endocrine Nightmare
I'm a stay at home Mum who has been struggling with finding help for my family, who suffer from a wide range of Endocrine problems. As our journey continues, I hope our experiences may serve to help other families who find themselves in a similar situation.


Judy (judycolby): Cushing's Family
Cushing's Syndrome - our family journey

Kay (casperslove): Cushie Mama

I'm just a mom who was dealt the diagnosis of Cushings disease and this is my journey from surgery on and how I get through each day.

Lucky Santangelo: My Life With Cushing
After my work in the office, I tried to research on the web about this Mr. Cushing (cushing's syndrome). I found out that I have almost all of the symptoms such as moonfaced, buffalo hump, hypertension, water retention, central obesity ( i weighed 94 kg); purplish straie on the abdomen and legs and unintentional weight gain...

Mary (MaryO): Cushing's & Cancer
The life and times of a pituitary Cushing's survivor (1987) AND a kidney cancer (Renal Cell Carcinoma) survivor (2006).

• Addison's Help to promote Addison's Disease awareness and adrenal issues.
  
• Cushie Blogger We are a group of Cushing's patients, family members and friends, who are members of the Cushing's Help and Support Message Boards.
  We don't always write about Cushing's because we have varied and interesting lives but the syndrome is always lurking behind the scenes, somewhere.
  
• Cushie Info Blog It's About Time There Was Support for Cushing's.
  

Mary (mertie): Mary's Mindless Musings
Thoughts on Cushing's and life

Our Newest Blogger! Missaf: Brain Tumors Can Make You Fat
Since April 8th is the day we Cushing's patients call "Cushing's Awareness Day," I'd like to do my part by blogging as much as possible throughout the month of April on this blog.

Nancy (NancyJ): It's a Cushie Life
It's a Cushie Life: my journey to Cushing's Syndrome recovery

Rene (alexsmom): Miss Diagnosis
My life as a mom and as the parent of a child with Cushing's Disease

Robin (staticnrg): survive the journey
Cushing's survivor gives tips and help to others with the disease

Saberlowe (Saberlowe): Sarah Dumps Cushing's
Follow my journey as I kick this disease to the curb and move on with my life.

Sarah (smcsk8): Sarah versus Earl
My journey to diagnosis and, hopefully, a cure for Cushing's Disease

Stephanie (KaylaSivler): Being a Cushie
I always wanted to be special but having a rare disease wasn't quite what I had in mind...

Tealou: Daily Doses of WTF
For some reason I felt compelled to document this

Several Contributors, including Robin (staticnrg) whose idea it was to start this blog, Bug, CindyRPT, Jessie, Judy, Kristin, Lisa, Mal de Med, MaryO, Mertoo, PhilB and Steve : Herding Zebras
Who are we? We are "zebras".

We are people with stories to tell about chronic illness as it pertains to our lives or the lives of those we love.

There are two types of contributors to "Herding Zebras":

• Those who who blog about one or more "rare" illnesses and wish to share here, too.
  
• Those who experience and write about their "zebra" illness but do not have their own blogs.

Zebra illnesses come in many forms. Each day brings new challenges, new rewards, and new hope. This blog is about sharing those with you in hopes it will help someone.

"When you hear hoofbeats, think horses, not zebras"

Cushing's and Cancer - the Reality of it all

This post is by Judy, a long-time message board member who is in the middle of Cushing's patients.  Both children and her ex-husband have dealt with Cushing's.  Judy is a Cushie-Blogger.

She posted this on her blog at http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html

Okay, I'm probably ready to get politically incorrect here. Oh well.
It seems that at least once a day, sometimes many times a day,I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live. Repost.......

I have no doubt that is true. I have known several cancer patients & it is a real struggle and sometimes the outcome isn't good (understatement).

Now here is the *but* & my own little personal rant.

A Cushing's patient has many wishes.
1. Finding a doctor that believes they can actually be sick, not just fat & depressed (which happen to be symptoms).
2. Having friends & family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn't accomplish something that day.
4.Being able to find an understanding doctor that isn't halfway across (or clear across) the country. The same can be said of finding surgeons.
5. Wanting their mind to be clear enough that they can keep up with their job & their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn't feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn't have so much muscle & bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.

This list could go on & on. The really sad part is that there were times I wished my family had cancer. Getting a dx would of (usually) been so much easier. Cancer doesn't usually affect every system in the body. If you get a cure from cancer you aren't usually left with permanent damage to random body systems.

Statistics say that Cushing's is rare. I know it's not. As the Cushie community says - it's just rarely diagnosed. Most people think they don't know anyone with Cushing's. Most people would be wrong. They just don't know a diagnosed Cushing's patient.

That overweight woman in front of you in the checkout line? The one that has terrible mood swings? She might have Cushing's. The coworker that suddenly can barely do her job because she is so exhausted and has terrible brain fog? She might also have Cushing's. You know that girl at school that now has arms so hairy it looks like fur? You know, the one that also smells funky sometimes? Yeah, she probably has Cushing's. You laugh at her but you know what? This disease doesn't discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day.
As with the list of *wishes* I could go on & on because Cushing's truly is the disease that keeps on giving & giving & giving. Even after a cure (relative term) it still keeps on giving.

As a wonderful neurosurgeon has said "Cushing's kills." It just does it at a very slow, painful pace.

MaryO'Note:

This is fantastic, Judy. Thanks for saying it!

I've often seen that stupid FB post and haven't reposted it.

I am both a Cushing's and a cancer survivor. For me, the cancer was easier to deal with.

I have been dealing with Cushing's and the after-effects since the early 1980's.

All I'm left with after my cancer is a scar and some bad memories.

I think Sarah's death got lots of us thinking. We've seen so many unnecessary Cushing's deaths and it just breaks my heart.

Judy, may I use this as a guest post on my Cushing's and Cancer blog? It's perfect!

Cushing’s Blog Alerts ~ June 24, 2010

I was diagnosed Cushing's disease last year due to a pituitary ...
By admin
I'm scared, the surgery is going to be performed in Mexico using the transphenoidal method, my adenoma is 6 x 5 mm, located on the left side of the gland, the.
No SubHealth - http://www.nosubhealth.com/

Cushing's Family
By judycolby
My family is now Cushing's free. Seems weird to be at the end. Pretty anti climactic. Bill had surgery with the same surgeon that J&J used last year. When he came out of the OR to talk to me, he said "you are now the only one in yor ...
Cushing's Family - http://judcol.blogspot.com/

Cushing's & Cancer: CAH (congenital adrenal hyperplasia) and ...
By MaryO
Cushing's & Cancer. The life and times of a pituitary Cushing's survivor (1987) AND a kidney cancer (Renal Cell Carcinoma) survivor (2006). I must be a Super-Woman...NOT! Hiya! About Me. Cushing's and kidney cancer (renal cell ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

A Day in the Life of a Cushie: Times are Tough
By Kristin
Surgery is often not a cure-all to Cushing's Syndrome. I read on the internet that it can take up to 10 years for Cushing's Syndrome to go into remission! Most doctors will not tell you that. You have to be your own doctor and do your ...
A Day in the Life of a Cushie - http://agalwithcushings.blogspot.com/

*OT* - Cushing's Disease...anyone here suffer from this? in ...
I was googling symptoms I currently have and came up with Cushing's disease...I seem to have all the symptoms and was interested to know if...
forums.ebay.com/db2/topic/Clothing-Shoes.../510235087&

Selective Venous Sampling for ACTH in Cushing's Syndrome — Ann ...
We performed selective venous catheterization and sampling for ACTH in six patients with ACTH-secreting pituitary adenomas (Cushing's disease) and four ...
www.annals.org/content/94/5/647.refs?related...

Cushing's Disease & the Liver | eHow.co.uk
Cushing's Disease & the Liver. Cushing's disease, or Cushing's syndrome, is a hormonal disorder caused by overwhelming amounts of the hormone cortisol in ...
www.ehow.co.uk/about_6617903_cushing_s-disease-liver.html

Cushing's Blog Alerts, May 3, 2009

Cushing's Family
By judycolby
I really want to put the kids' Cushing's behind us, yet I feel reluctant to go. I'm not sure what's up with me at the moment. Justin is off work now until sometime after his surgery. He went with us to take Dad to lunch today. ...
Cushing's Family - http://judcol.blogspot.com/

 

Miss Diagnosis: What's In A Name?

By Hi, I'm Rene

It's funny; you tell someone Cushing's Disease, and you might as well have said you have a headache. You tell them cancer and the world changes. I'm not diminishing cancer by any means, but it would be nice to have a "label" that would ...
Miss Diagnosis - http://missdiagnosis-rene.blogspot.com/

 

Medical Videos: Endocrine and Metabolic Disorders
By anuvinu
Cushing's Syndrome o Glucocorticoid (cortisol) hormone excess * Congenital Adrenal Hyperplasia (CAH) o Deficiency of cortisol * Adrenal Insufficiency o Acute Adrenocortical Insufficiency o Chronic Adrenocortical Insufficiency (Addison's ...
Medical Videos - http://med-videos.blogspot.com/

 

waterdragon91: Cushing's
By Nini
If I have Cushing's Syndrome, which i check out for almost ALL of the symptoms and it IS caused by corticosteroids, then my doctor may lower my dose of prednisone which would make me all types of happy. Ugh PMS, i am so moody latelyyyyy ...
Nini - http://waterdragon91.livejournal.com/

Addison's / Adrenal Alerts 2/15/2009

Cushing's & Cancer: Hair, Hair, Go Away!
By MaryO
Addison's Alert. 3 days ago. Repairing the Healthcare System · More Medicaid: Is This What We Want For Our Healthcare System?: Part 2. 4 days ago. Kidney Cancer Bloggers · 100000 Mile Overhall is now complete! 2 weeks ago ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Happy Valentine's Day Leslie... ~ Should Have Seen It...
By Steve
It has brought me down. It has taken most of what I own. I am in debt. Yet, I still see the good in life. Take a look at life through my eyes. There is something wonderful to see everyday, if we stop to look. HOME; CUSHING'S; ADDISON'S ...
Should Have Seen It... - http://www.shouldhaveseenit.com/

Cushing's Alerts - 1/19/09

survive the journey: Healthcare: Is it really about me, the patient?
Mary O'Conner had Cushing's in the 80's with no support whatsoever; she had no help or information other than what she gleaned at her library. Thanks to her hard work and dedication, she founded the cushings-help.com website and message ...
survive the journey - http://survivethejourney.blogspot.com/

Cecilia J. the Vet: Dogs
By Cecilia J.
Dogs lose hair because of a gland disease like Cushing's disease and pseudo Cushing's disease. The disease makes dogs have muscle wasting, weakness, and of coarse, hair loss. Test your dog for Cushing's, and have him treated immediately ...
Cecilia J. the Vet - http://ceciliajthevet.blogspot.com/

Bactrim suspect death lawsuit to proceed vs NBC: Ezeli bactrim ...
By Seachy
That can cause Cushing's syndrome, in which you can gain weight in your upper body and develop hypertension, bruising, weakness, depression, acne, and excess hair growth. For adults and adolescents infected with human Ear ringing toprol ...
Bactrim suspect death lawsuit... - http://bactrim-bactrim.blogspot.com/

Herding Zebras: From My Email
By Robin
Cushing's can affect any family, any age, any race. If you don't have Cushing's OR cancer, consider yourself blessed. If you don't have Cushing's AND cancer - wow, you're lucky. If you have both - welcome to my life. ...
Herding Zebras - http://herdingzebras.blogspot.com/

Cushing's Alerts

Cushie Blogger
By MaryO
We are a group of Cushing's patients, family members and friends, who are members of the Cushing's Help and Support Message Boards. We don't always write about Cushing's because we have varied and interesting lives but the syndrome is ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Ready Go: Battling Endometriosis: I may need to change the name of ...
By ReadyGo
So far, all of my tests have been Cushing's positive except for one, and it turns out I may have done that test incorrectly. So, because Cushing's is progressive disease, and the tumor will continue to grow and cause ...
Ready Go: Battling Endometriosis - http://thebattlecontinues.blogspot.com/

Depression Forum: Might not be all in my head - DailyStrength
Cushings Disease. This disease could be why I am not responding well to antidepressants and other treatments. That is not saying I do not have a part in the depression. I am just saying it may not be all in my head. ...
Depression Forum - DailyStrength - http://dailystrength.org/c/Depression/forum

latestgroove.com: WE NEED YOUR HELP
By theempty
Another month of constant testing for Cushing's Syndrome her Endocrinologist called us on December 28th, 2007, informing us that Haven would now be handed over to Pediatric Oncology as she has Ganglioneuroblastoma Cancer. ...
latestgroove.com - http://www.latestgroove.com/

Honey, not tonight » My Battle With Cushing’s Syndrome
A Blog Chronicling the Journey of a Cushing’s Survivor.
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com/

Cushing's and Adrenal Alerts

Violin Madness: More news.
By stoptheviolins
Two years ago I was diagnosed with Cushing's Disease, a disease caused my a rare type of brain tumor. I had brain surgery to remove the tumor and both adrenal glands removed, and I am still recovering from the effects of ...
Violin Madness - http://violinmadness.blogspot.com/

Addison's Help: Adrenal Alerts
By MaryO
Cushing's & Cancer: Medical PBL: Examination of a Cushing's By MaryO. In 2006, I was also diagnosed with kidney cancer (renal cell carcinoma). My left kidney and adrenal gland were removed. Having an adrenal gland removed complicates my ...
Addison's Help - http://addisonshelp.blogspot.com/

Cushing's & Cancer

Cushing's & Cancer:
Robin's Cushing's Summary in survive the journey: Blech...:

...Thus, my life is a rollercoaster. And it is for most folks trying to figure out hormone replacements 'manually' instead of being on autopilot like normal people. Just one hormone replacement is not so bad. But factor in several, and it's a different story. Both GH and thyroid replacements need enough cortisol to work correctly. They can cause an already 'low' person to go into AI without sufficient cortisol replacement. Too much cortisol replacement, and one is back into being 'Cushie'. Working one-and-a-half jobs while riding it isn't easy.

Damned disease. I hate it. I used to love a good rollercoaster ride....

Google Alerts

Google Blogs Alert for: cushing's

A (Cushing's) Referral
We taught him well." And not. "What on God's green earth was that idiot doing?? This patient doesn't have Cushings!!" I think they taught me well. I hope. We shall see when after they are done with their evaluation.
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Update on...me
By MaryO(MaryO)
I haven't had a dexa since Cushing's. I know I'd lost height then. I wonder how much more I've lost! In a couple weeks is my appointment with my endo. I wish there was more he could do for me, without my kidney cancer doctor blocking ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Jess & I had a good day today. We did the NW Kansas Quilt Shop Hop ...
By judycolby(judycolby)
Jess & I had a good day today. We did the NW Kansas Quilt Shop Hop. This is the fourth year for the Shop Hop. Before, we've always gone with a group but it didn't work out that way this year. Previous years we've also done it all in one ...
Cushing's Family - http://judcol.blogspot.com/

Google Alert - Cushing's

GH stim test + Arginine results
I just got the results faxed to me. I am still having bad AI problems every weekend and they are getting worse and lasting longer. I still cannot focus today, so any help explaining this would be appreciated. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Kidney Cancer - Causes, Symptoms, Risks Factors and More
By MaryO(MaryO)
Kidney Cancer - Causes, Symptoms, Risks Factors and More:. "...With prompt and appropriate treatment, the kidney cancer mortality rate is fairly low, unfortunately kidney cancer has a tendency to spread early, especially to the lungs, ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Interview with Joselle - Sep 11,2008
Joselle writes in her bio: "I am a 48 year old female recently diagnosed with Cushing's Disease caused by a pituitary adenoma. It's taken a few years to finally come to this diagnosis. I had a series of symptoms which were indicative of ...
CushingsHelp| BlogTalkRadio Feed - http://www.blogtalkradio.com/CushingsHelp