Thursday, November 9, 2017
Tuesday, November 7, 2017
|I encourage you to create an account and read, Read, READ on Cushings-help.com.|
The Cushing's Help message boards were founded on September 30, 2000. There are over 383,000 posts and 72,576 members as well as a chat room, photo gallery and much more. Over the years, we've surely covered your issues!
While many post on Facebook now, there is so much merit to posts organized by topics AND reading information about the person posting based on information they provide in their signature. For me, I was always watching the Cushies way deeper into their journey than me, and I ultimately would place more weight on those responses while still taking all comments under consideration. With facebook, there is no way to know what each person commenting has gone through (undiagnosed or three surgeries including a BLA). That makes it harder and more confusing to me. I encourage you to create a username and password and start reading! Learn something on your own. Read about others' stories... you will be quite amazed to see how relevant it is to you... even without posting a new topic about yourself. As much as we Cushies struggle uniquely with the symptoms as they present and how they affected our lives and relationships, you will learn that much of our experience also overlaps. Focus on that parts that are the same, and you will find yourself filled with more knowledge than you had before you started.
To join Cushings-help.org, click here.
Wednesday, October 25, 2017
Saturday, October 21, 2017
Saturday, September 30, 2017
You can do the same!
If you care to know what I wrote about a particular topic, you can do google keyword searches like:
• Cushing's moxie buffalo hump
• Cushing's moxie cognitive
• Cushing's movie depression
• Cushing's moxie cyclical
• Cushing's moxie tips
• Cushing's moxie pituitary surgery
• Cushing's moxie adrenal crisis
• Cushing's moxie testing
Dear Google will bring you whatever is tucked away in this little blog of mine.
I'm in the process of reorganizing the blog into a functioning website to ensure all topics are easily accessible by topic, not just chronologically according to my life and the way I experienced it. Until that project is complete, try this way. It works for me!
Tuesday, September 26, 2017
I started humming this song that my friend Cushie Steph wrote and recorded over five years ago. I knew it was just the thing for a quick "pick us up."
Click to the youtube video below.
Sunday, September 17, 2017
Friday, September 8, 2017
Please research patient advocacy. Please learn what it means to stand up for yourself or loved one. Please read up on how to be assertive, even with doctors, surgeons, everyone.
Some moderators and I are on high alert trying to convince people in adrenal crisis to get he care they need. They just can't or won't advocate for themselves. This is what I think of that, folks. It's serious. It's life-threatening. Let's learn something from all the Cushing's deaths surrounding us. Please. Those who care about you want the best for you, but we can't be there to do it for you. You worry us. Don't make us have to stress dose over you. Save yourself.
Wednesday, September 6, 2017
Originally published on 9/6/2017.
I'll spare you waiting for the end of the article where it is mentioned and tell you now.
Here is Casey's mother-in-law initial entry on the gofundme page:
My name is Darlene and I am writing this on behalf of my son Wayne Dailey. On August 29, 2017 Wayne tragically lost his wife Casey as a result of the devastating flooding in Houston, TX caused by Hurricane Harvey - shattering their and our lives forever.
Casey was home recovering from major surgery (adrenalectomy) just before the storm and ensuing flooding occurred when she became very ill due to post surgery infection and needed immediate medical attention. We worked fervidly to contact all the emergency rescue organizations to try to get Casey evacuated to emergency medical services. After trying somewhere between 24-48 hours to get rescuers to the family we went to social media pleading for help. We were finally able to get volunteers to try and reach them.
Wayne carried their two young sons, Luke and Ronnie, across the street in chest high water to Casey’s parent's home to leave the boys with them in order to get Casey to emergency medical services as quickly as possible. In the process of the evacuation, Casey stopped breathing and in spite of exhaustive attempts by the volunteers and paramedics to revive her - Casey could not be brought back to life. Wayne was separated from his family by flood waters and could not return to them until the next day. There is so much more to this story and many of the details of the struggle to get the emergency services Casey so desperately needed have been left out.
I cannot even begin to think of all the ways this will impact my son Wayne and two grandsons. Casey was a kind and loving person, a caring mother and wonderful friend to many. She was always willing to help others and reaching out to those she never met. Casey was the glue that kept family and friends together.
Due to the economic conditions and Casey's illness they were already facing financial struggles and did not have life insurance. We are asking for any help you are able give towards immediate and future needs for the family’s many medical and funeral expenses.
We are setting up a fund and bank account where the donations will be deposited and specifically used by Wayne to pay for Casey’s funeral, medical expenses, immediate bills they may have and any unexpected expenses for Luke and Ronnie while Wayne tries to regroup and build a new life for him and his sons.
Our hearts are filled with gratitude for everyone who worked so fervently to get help to Wayne and Casey and for the volunteers who risked their lives to rescue them-there are no words. Any help will go a long way. We extend our heartfelt thanks to all those who can help in this tragic moment that has left us stunned and overwhelmed.
To my fellow Cushies. I write this especially to you. I am sure that all Cushies grieve with me today and forever in the loss of Casey and so many others. We will add Casey to the list of all those we fight for every day.
Although we see far too many deaths, the Cushing's community will take our shock about every soul lost to this horrific and debilitating disease and fight for more Cushing's awareness for everyone involved in a Cushie's care: patients, patient's families, doctors, endocrinologists, ER physicians, nurses, emergency medical techs, firefighter emergency teams, and any medical professional who can save a Cushie's life from not enough cortisol -- an adrenal crisis -- with a simple $7 injection.
Thursday, August 17, 2017
Tuesday, August 15, 2017
The internet is loaded with articles about how to choose a surgeon. Consumer Reports gives its suggestions. So does Forbes.
I would argue that we need to be considering other things as well -- more medically-specific issues.
-- How do you reach the adrenal glands? Which operative method do you use to perform BLAs: posterior retroperitonial laparoscopic approach or anterior laparoscopic approach? What are the benefits and risks of each method?
I had my BLA done via posterior approach. Here is one 2012 article I found about retroperitoneal BLAs. I did not suffer much pain pain post op so I didn't take many pain killers. I could move around easily because our bodies bend forward, not backwards, in our daily lives. I know many people who have had their adrenal glands removed from the front or side. They experience a reasonable amount of pain and discomfort from the abdominal surgery, but they manage with cautious moving and pain killers. They survive and would do it again.JUST REMEMBER: Many doctors have been trained to perform BLAs either using the posterior or anterior approach, and they like to do it that way. Let them. You don't want them practicing on you. If you prefer one method, then find a surgeon that specializes in that method.
-- Will a robot assist in my surgery?
This is a real thing. You better ask. Then click here to see how many adrenalectomies are listed under the 'robot' column.
-- Will my weight cause any surgical concern?
The arteries supplying the suprarenal glands are numerous and of comparatively large size; they are derived from the aorta, the inferior phrenic, and the renal. They subdivide into minute branches previous to entering the cortical part of the gland, where they break up into capillaries which end in the venous plexus of the medullary portion.
-- Incidence of rest tissue or remnant tissue after you perform BLAs? (informal study from BLA group of 200 patients suggest 10%)
-- Incidence of Nelson's of patients (med lit says 20%)
-- Have you had any of your patients get sepsis? die 30 days after BLA?
-- Under what circumstances should I seek emergency help after I leave the hospital?
The surgeon may say things like fever over 102 degrees, oozing wounds, extreme pain or redness at the incision sites, etc. Doctor should give you a number for how to reach him in an emergency.
-- How much hydrocortisone is administered before the surgery and during the surgery?
-- How often will you come visit me in the hospital? Daily?
-- When are cortisol levels checked post op in hospital?
-- Who will write the orders for my hydrocortisone while I am in the hospital?
-- How do I contact you if I am having trouble post op?
The doctor may say just tell the nurse, and the nurse will contact his/her office. That's all good except that most nurses are very hesitant to bother a doctor with all of the patient's questions. In our case, we need direct access to the surgeon and endocrinologist. I have called the surgeon on my cell phone when the nurse wouldn't call after repeated requests. I have called the surgeon when the doc's fellows pay a visit and try to do something other than what the surgeon and I worked out at my pre-op appt. Don't be afraid to raise a stink and get the information you need. The folks there won't like it, but what can they do? Spit in your IV? No... you will be out of there soon, so be sure you get what you went there for.
-- When will my pathology report be back?
-- How often will I see you for post op appointments?
-- Would you be so kind to take a photo with me?
Since you are going to send this Cushing's in remission, this will be one of my before photos. I want to have a nice souvenir to remember us.
Sunday, August 13, 2017
It seems in some people's minds, it's not as bad as cancer. Only cancer is as bad as cancer. That proves to be a very myopic perspective and limited understanding of all the diseases of the world.
Take Cushing's for example. We Cushies know the devastation we suffer physically, mentally, and emotionally from excess cortisol.
As you can easily see, untreated Cushies really aren't very well.
- Cushies experience a lower quality of life than cancer patients in these categories:
general health, vitality, social functioning, and mental health.
- Cushies suffer equally with cancer patients in these categories: bodily pain, emotions.
- Cushies fair slightly better than cancer patients in this one category: physical.
Yet, where is the compassion? Where is the support? Where is the community to surround a Cushie and load them up with freezer meals and casseroles?
I don't take anything away from cancer patients. It is indeed terrible and life-threatening. However, they don't have the monopoly on suffering, and we Cushies wish people would stop trying to make us feel better by saying we don't have it as bad as they do.
The plain fact is that we Cushies often don't have a support community other than the ones we build to support each other online. "Cushies doing it for ourselves" is a great slogan, but we need the support of our loved ones, both family, friends, and coworkers. This makes the pursuit of Cushing's Awareness all the more important.
Wednesday, August 2, 2017
How did I find this out? Well, I complained to the specialty pharmacy that filled the growth hormone that because they require me to fill it every month and refuse to fill a 90 day rx, it costs me more... instead of paying $60 a month for two months $120 and get third month free, this would force me to pay $180 for three months. This was unfair, and she said there was a plan. Not income based. Asked if I take it every day... yes. Do I have trouble meeting the financial obligations for taking the GH? Yes... i have 20 other medications I take daily. She said, ok your copay from now on is zero. WHAT?! I asked how that can happen, why would humatrope company offer to do that? She said that the insurance company still pays them monthly so the Patients amount is very small in comparison to the big chunk they get from insurance. So in order to get money from insurance, they let the patient have it for free....
The questions are:
Are you over 18?
MUST BE YES
Do you live in the USA or Puerro Rico?
MUST BE YES
Do any of your reimbursements for growth hormone medicine come from government entities like Medicare, Medicaid, Tricare, etc? THIS MUST BE NO
I'm so happy I stumbled across this, and I want to share it with all the Cushies out there who suffer from growth hormone deficiency after pituitary tumor(s) and pituitary surgeries.
Tuesday, July 18, 2017
Friday, July 7, 2017
Do doctors screen obese people before gastric bypass for Cushing's? I doubt you are surprised that docs don't. Our friend Robin explains more on her Cushing's blog, Survive the Journey.
Thursday, July 6, 2017
As soon as the show finished, I took to google images. I went through many photos of Lauren. She is stunningly beautiful with delicate and lovely facial features. I noticed her weight increased over the years. Then, I sent Lauren Ash the following tweet:
|Photos of Actress Lauren Ash show facial plethora (red cheeks) and moon facies (weight gain in neck), both classic Cushing's symptoms.|
I'll let you know if I hear back!
Saturday, July 1, 2017
"The ADSHG surgical guidelines have been given a makeover!
The new-look guidelines are available on the website, with print copies in the hospital folder available in the online shop. The core prescribing information remains the same, explaining what level of extra medication and monitoring you will need in the event of most types of surgery or dental work.
New information gives the level of continuous infusion cover recommended, in line with the recently issued guidelines from the Society for Endocrinology. The ADSHG surgical guidelines also now include citations and a list of endorsing clinicians with an interest in adrenal medicine. This includes some past speakers from the ADSHG's medical lecture series.
Links below to get your copy:
Free to download
Blogger's direct link:
Online Shop: https://goo.gl/y3BM6p
I left this comment on the ADSHG Facebook page.
Thank you, ADSHG. We Cushing's patients who've undergone bilateral adrenalectomy in the United States ❤️ your materials as do the Cushing's patients who need guidance after pituitary surgery while they are in an adrenally insufficent state. We are very thankful for you and the Addison Clinical Advisory Panel, the group of doctors in the UK who treat adrenal disease.
Wednesday, June 28, 2017
"I am so sorry to read that we have lost another Cushie :( The "In Memory" pages are growing far too quickly. Rest in Peace, Kalyn :("
"I totally agree with you. This shouldn't be happening, but it happens a lot--2-3 times a year THAT WE KNOW OF. Many Cushies never reach out online to find others like them. They never find our safety net... and we lose them as they fall through the cracks.
We have lost MANY to Cushing's in the last decade I have sought diagnosis, treatment, and remission. Many of us have been trying very hard to create awareness.
I created a blog 9 years ago to share my story, medical research, and create a patient presence on the internet at a time horse and dogs had websites dedicated to Cushing's but humans didn't (true story) and before the time we used Facebook or even had cushing's groups.
Some of us have attempted to turn April into Cushing's Awareness Month by blogging every day instead of just posting Cushing's Awareness Day on April 8. Moreover, others won't participate. For unknown or personal reasons, many do not share info and photos about Cushing's and Cushies through FB, when so many have hundreds and thousands of friends connected to us on FB pages. Actually, I know the reason Amy don't share on FB. I suspect that Cushies' fear this would invite further humiliation disbelief, interrogation, and isolation from their "family" and "friends." Not sharing our experiences and horror stories cripples us significantly in our fight for Cushing's awareness.
Sharing another Cushie's FB post or creating your own infographics are such simple and effective ways to get the word out. Maybe 5 people read your message. With thousands of Cushies online, that's leads to thousands of people who learn about Cushing's.
If you want to create awareness, please, do your part.
I invite you to like my FB page Fight Cushing's with Moxie and visit my blog: http://cushingsmoxie.blogspot.com.
Share my posts freely on FB or email.
I chose to create awareness in this way. I encourage anyone to create blogs or even just share FB posts. Please make a commitment to do this. It makes a difference.
It is my strong belief that when every Cushie must does his or her part to create awareness, I mean with persistance and prevention in their heart, we will begin to reduce diagnosis times (some suffer 7-20 years!) as we pull Cushies from near and far into our Cushie safety net.
Once we meet a Cushie who understands us, we never let them go.
PS A keyword search for "death by Cushing's" bring up quite a few articles and blogs that demand reviewing.
We lost another Cushie sister today, Kalyn Allen. Her husband posted these updates:
Yesterday he posted:
Kalyn is in critical condition in the CV-ICU at St. John's in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can't move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go. Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and I are having to make daily trips into tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support."
"This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now is free to be reborn again and continue the cycle of life to hope one day to reach nirvana. While we will morn her passing our attachments to this world of suffering and rebirth are what bring us back over and over. So let us not mourn a loss today but say good luck in the next. For we are full of desire for this world and we will surely meet again.
My heart breaks reading that.
Thank you to our Cushie friend Nancy for befriending Kalyn and notifying us of her tragic death. Thank you to Carla, Nancy's niece, for reading Kalyn's story and connecting her to Nancy. We often say that it takes a Cushie to understand a Cushie. Cushie friends are amazing, supportive, and essential.
Family and friends of Cushies, please stay on high alert. Cushies talk a lot about Cushing's because when we feel compelled to create awareness so others won't suffer needlessly alone, blaming themselves for weight gain and disfigurement.
The rest of her story can be seen im on Kalyn's YouCaring page. Take a few moments to read it. Her Cushing's came on very quickly--diagnosed late 2016'with pituitary surgery (-ies ?) in May 2017. Kalyn's page offers more details. Please consider donating any amount to help this family recover financial from this.
The Cushing's community has mourned too many deaths of friends in the past. This can't keep happening to Cushies. I'm so sorry, Kalyn. I send my condolences to her husband, children, parents, family, and friends. We will always honor you, Kalyn, as one of us. ❤️