 | Cushie Calendar
Week of April 22 2018 |  |
Personal Stories - MaryO
Sunday Apr 22
Life changed for me in 1983. At first I noticed I'd stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant. Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for the 30 minutes.
Read more at http://www.cushings-info.com/index.php?title=Personal_Stories_-_MaryO Comment added to “Kristin T, Undiagnosed Bio”
Sunday Apr 22
... I have every single symptom of Cushing’s, and I believe it is cyclical and has been happening for about 26 years. It will be what kills me, I fear. Of course, it will be deemed because of obesity and health issues related to it. It is frustrating that doctors just think-it’s so rare, this cannot be what’s wrong. I think it is rarely diagnosed because it us hard to get the tests to give the accurate information. I do not think they will ever diagnose me... Read more at http://wp.me/p3tb2N-r0 Cushing's Awareness Challenge - Day 22
Sunday Apr 22
Steroids are my BFFs, but at the same time, they are the enemy. When I had Cushing's, steroids, whether produced from your body or taken in pill form, were the absolute worst. Now, my life depends on them.
It's a hard switch to flip, and years later, still finding myself battling the need to hate them. I hate taking medication daily. I hate bringing pill bottles, needles, and vials filled with steroids everywhere I go. Read more at http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-22.html Comment added to Toni (Toni), Adrenal Bio
Sunday Apr 22
I had adrenalectomy in December 2015. I am currently still on steroids. My other adrenal gland is taking a long time to recover, but I'm half way there. My am cortisol is 5 I need to be at 10. Due to the long time my doctor tends to feel I had bushings for almost 7 years prior to diagnosis. But yes the itching went away completely. I know there is hardly any info on itching, I think I read in 2 different articles out of 100's that some people itch... Read more at https://cushingsbios.com/2016/01/23/toni-toni-adrenal-bio/ Medical Therapies in Cushing’s Syndrome
Sunday Apr 22
Medical therapy has an important, albeit secondary, role in patients with Cushing’s syndrome. While medications are not currently used as definitive therapy of this condition, they can be very effective in controlling hypercortisolism in patients who fail surgery, those who are not surgical candidates, or those whose tumor location is unknown. Medical therapies can be particularly helpful to control hypercortisolism in patients with Cushing’s disease who underwent radiation therapy and are awaiting its salutary effects. Read more at https://cushieblog.com/2016/12/04/medical-therapies-in-cushings-syndrome/ Kiko Matthews, Pituitary Cushing's Survivor Solo Rows Atlantic yo Raise £100K For Hospital That Saved Her Life
Monday Apr 23
Eight years ago she almost died after a 6mm tumour on her pituitary gland – a gland at the base of the brain responsible for hormone control – brought on an aggressive form of the rare disease Cushing’s. The tumour made her cortisol levels climb dangerously high, causing severe memory loss, muscle wasting, osteoporosis, end-stage diabetes, insomnia, ‘brain fog’ and psychosis, or what Kiko now affectionately calls ‘mental behaviour’. Her body ballooned, her face grew red, spotty and hairy and her muscles wasted to the point she was too weak to walk. Read more at https://cushieblog.com/2017/07/24/kiko-matthews-pituitary-cushings-survivor-solo-rows-atlantic-to-raise-100k-for-hospital-that-saved-her-life/ Add or update Your Bio
Tuesday Apr 24
The Add Your Bio form has been updated so that it no longer requires Flash. Your information will help others.
I would like to add that if anyone would like to do something for the Cushing's Awareness Challenge but you don't have (or want to have) a blog, why not consider adding your bio to the website this month?
More info at http://www.cushings-help.com/forms/bio.htm Comment added to Danielle, Undiagnosed (Cyclical Cushing's)
Tuesday Apr 24
Peter's comment reads almost like an entire bio of its own. 'I am in a similar predicament. In January 2017 I started having random episodes of Severe sweating, I thought it was because I was overweight at nearly nearly 250 pounds with a height of 5’8. I went to primary care physician he recommended I see a Hematologist who saw some abnormalties in my blood. He recommended I see an Endocrinologist. I Googled to find a top one in my city. He took a lot of blood samples and urine test, ACTH level was abnormal is what he discovered, unlike others I went directly to an MRI, first of adrenal gland then MRI with and without contrast. Results showed a micro adenoma, for non medical people reading it’s basically a small tumor on the pituitary gland possibly causing excess cortisol production... Read more in the comments at https://cushingsbios.com/2017/05/18/danielle-undiagnosed-cyclical-cushings/ Ren, Undiagnosed Bio
Tuesday Apr 24
Ren is from Canada. Her symptoms onset at a time where her lifestyle was out of control. She was drinking heavily, using drugs and didn't have a care in the world. When meeting with a new family doctor (after getting sober) all of the focus was put onto her recovery and mental health Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above but she didn't have these problems before the physical symptoms onset. Read more at https://cushingsbios.com/2017/10/24/ren-undiagnosed-bio/ New Cushie added to the MemberMap
Tuesday Apr 24
Ren is from Canada. Her symptoms onset at a time where her lifestyle was out of control. She was drinking heavily, using drugs and didn't have a care in the world. When meeting with a new family doctor (after getting sober) all of the focus was put onto her recovery and mental health Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above but she didn't have these problems before the physical symptoms onset. See all the entries at http://www.zeemaps.com/pub?group=342449&legend=1&locate=1&add=1 Cushing’s Syndrome: A Tale of Frequent Misdiagnosis
Tuesday Apr 24
Cushing’s syndrome is a condition you probably have never heard of, but for those who have it, the symptoms can be quite scary. Worse still, getting it diagnosed can take a while. Cushing’s syndrome occurs when the tissues of the body are exposed to high levels of cortisol for an extended amount of time. Cortisol is the hormone the body produces to help you in times of stress. It is good to have cortisol at normal levels, but when those levels get too high it causes health problems. Although cortisol is related to stress, there is no evidence that Cushing’s syndrome is directly or indirectly caused by stress. Read more at https://cushieblog.com/2017/06/24/cushings-syndrome-a-tale-of-frequent-misdiagnosis/  Light rain shower
63°/57°  Clear skies
73°/50° Pituitary tumors require collaborative care for best treatment results
Thursday Apr 26
“In the last few decades, a considerable body of evidence supports the concept that patients with pituitary tumors would receive the best care from units of excellence composed of expert neurosurgeons performing pituitary surgery by transsphenoidal and other approaches, plus experienced neuroendocrinologists devoted to these types of tumors,” the authors wrote. “These experts, working in liaison with supporting units, would form a center of excellence for pituitary tumors (PTCOE). Such a center would be the optimal organization for patients, the most cost-effective for health administrators, and a more suitable structure to allow for derivation and presentation of results, and advancement of pituitary science.” Read more at https://cushieblog.com/2017/09/28/pituitary-tumors-require-collaborative-care-for-best-treatment-results/  Light rain
73°/50° Diagnostic Testing for Cushing's
Friday Apr 27
Diagnosis is based on a review of the patient's medical history, physical examination and laboratory tests. Often x-ray exams of the adrenal or pituitary glands are useful for locating tumors. These tests help to determine if excess levels of cortisol are present and why. No single lab test is perfect, and usually, several are needed. The three most common tests used to diagnose Cushing's syndrome are the 24-hour urinary free cortisol test, the measurement of midnight plasma cortisol or late-night salivary cortisol, and the low-dose dexamethasone suppression test (LDDST). Another test, the dexamethasone-corticotropin-releasing hormone (dexamethasone-CRH) test, may be needed to distinguish Cushing's syndrome from other causes of excess cortisol. Read more at http://www.cushings-info.com/index.php?title=Diagnostic_Testing Adrenal Insufficiency
Friday Apr 27
In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about 'getting rid of extra belly fat' by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.
Read more at http://www.cushings-info.com/index.php?title=Adrenal_Insufficiency Cushing's Disease or Syndrome?
Friday Apr 27
Cushing’s disease is the most common form of endogenous Cushing’s syndrome. It is caused by a tumor in the pituitary gland that secretes excessive amounts of a hormone called Adrenocorticotropic hormone, or ACTH. Fortunately, this type of tumor is typically benign. Unlike a cancerous (malignant) tumor, a benign tumor stays in its original location and will not spread. After you are diagnosed with Cushing’s syndrome, it is important that your doctor continues the diagnostic process to determine the cause of hypercortisolism.
Read more at http://www.cushings-info.com/index.php?title=Cushing%27s_Disease_or_Syndrome%3F Cushing's Awareness Challenge - Day 27
Friday Apr 27
It is hard to be a good friend when you are sick. Illness is all consuming. Not many people my age really understand that. At 30-something, most are consumed with careers, finding who you want to spend your life with, having kids, even buying homes. Illness is a foreign subject. No one knows what to say when I bring up anything health related. The room gets quiet.
On the other hand, illness is my whole life. I don't know anything about having a real career, having a boyfriend, buying anything major, let alone a home. And kids are not even on my radar yet. My life is filled with medications.. Read more at http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-27.html Interview with Charlie (creativeogre)
Friday Apr 27
Charlie is not yet diagnosed with Cushing’s but has many symptoms. He writes, in part, “I understand that Cushing’s Disease is a very difficult disease to diagnose. However, it seems as though we have had to guide doctors through this process over the past year. If I sound bitter and frustrated, it is because I am! I have not been able to work over the past year. Tasks that used to take me several hours to complete now take two days. I can no longer walk the dog. I do not sleep well at night..” Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/10/interview-with-charlie-creativeogre Clear skies
66°/52° Pituitary Post-Op
Saturday Apr 28
After your physicians have determined that it is reasonably safe to discharge you from the hospital following transsphenoidal pituitary surgery there are a number of important situations that may arise. Most people feel well after discharge. However, you should be aware of these possible problems, just in case. The following general guidelines are provided to promote your health and safety. Headache, facial, and sinus pain are not uncommon following pituitary surgery. As you may have noted, the pain and discomfort typically improve on a daily basis following surgery. If you should experience a worsening of your pain or discomfort, please contact your neurosurgeon immediately. Read more at http://www.cushings-info.com/index.php?title=Pituitary_Post-Op Can You Help With a Guest Question?
Saturday Apr 28
Is it possible to have cushing disease without high blood pressure? they are experiencing a lot of the other symptoms kidney stones, headache, fatigue, joint pain, stretch marks on back, abdomen, arms, breasts, hair loss, obesity in stomach area, potbelly, thin legs, memory issues, thinning of skin, irregular periods, oily skin, acne, puffy face etc. Read more at https://cushieblogger.com/2018/03/31/can-you-help-with-a-guest-question/ Cushing's Awareness Challenge - Day 28
Saturday Apr 28
Many people with Cushing's, adrenal insufficiency, lupus, and other chronic illnesses cannot work due to their disability. It is not easy to apply for disability. There is a lot of paperwork involved, which can be hard emotionally to write about how much your illness limits you. You have to talk to all of your doctors, and get their support. Sometimes, even they will not understand the full picture. ..
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