Wednesday, October 1, 2014
This topic has invaded the conversations of Cushies for my whole eight years and probably even before. The damage of high cortisol is pervasive, altering the total self --mind, body, and soul. With debilitating effects from a disease no one has heard of (except the vets in your life), the Cushie feels an unfair burden to be a good patient: positive, happy, and strong, not letting the disease change who you are.
Cushing's is insidious. It breaks you down on the inside and outside, and it never lets up. The disease itself prevents you from having the strength in body and mind to fight. Others simply don't understand.
High cortisol damages your muscles including your heart, steals your physical strength, and keeps you from doing daily chores that you never use to consider real activity in your days. Forget climbing stairs, getting up easily from a chair, or standing for five minutes. Cushing's says no to that.
High cortisol also gives you additional
diseases that specialists never consider are related to each other: acid reflux, diabetes, irritable bowels, broken bones, tooth problems, headaches, and unrelenting fatigue. Others do not understand how fatigue cloaks a Cushie in a cement blanket that eliminates any fun of celebrations, family gatherings, or simple trips to the market.
High cortisol affects your brain with anxiety, depression, memory lapses, and confusion. Cushing's makes you feel dumb.
High cortisol takes your ego and replaces it with "ugly symptoms" of unstoppable weight gain, excess hair where women shouldn't have it, red or purple stretch marks, acne, hair falling out, and that buffalo hump you notice when you put your hair in a ponytail.
With all this swirling in my mind, I answered my new friend. On New Years Eve 2013, bilateral adrenalectomy began my escape from high cortisol, after seven grueling years of fighting for a cure.
"This disease is awful. No doubt. Welcome to the days when you learn to love yourself for all that you are, not what you can do or what you look like. In the end, not caring what others think is a very good lesson Cushies learn, and while difficult, it is exactly what we need to learn."
Saturday, September 20, 2014
Health Alert: Adrenal Crisis Causes Death in Some People Who Were Treated with hGH
Doctors conducting the follow-up study of individuals treated with hGH looked at causes of death among recipients and found some disturbing news. Many more people have died from a treatable condition called adrenal crisis than from CJD. This risk does not affect every recipient. It can affect those who lack other hormones in addition to growth hormone. Please read on to find out if this risk applies to you. Death from adrenal crisis can be prevented.
Adrenal crisis is a serious condition that can cause death in people who lack the pituitary hormone ACTH. ACTH is responsible for regulating the adrenal gland. Often, people are unaware that they lack this hormone and therefore do not know about their risk of adrenal crisis.
Most people who were treated with hGH did not make enough of their own growth hormone. Some of them lacked growth hormone because they had birth defects, tumors or other diseases that cause the pituitary gland to malfunction or shut down. People with those problems frequently lack other key hormones made by the pituitary gland, such as ACTH, which directs the adrenal gland to make cortisol, a hormone necessary for life. Having too little cortisol can be fatal if not properly treated.
Treatment with hGH does not cause adrenal crisis, but because a number of people lacking growth hormone also lack ACTH, adrenal crisis has occurred in some people who were treated with hGH. In earlier updates we have talked about how adrenal crisis can be prevented, but people continue to die from adrenal crisis, which is brought on by lack of cortisol. These deaths can be prevented. Please talk to your doctor about whether you are at risk for adrenal crisis.
- Why should people treated with hGH know about adrenal crisis? Among the people who received hGH, those who had birth defects, tumors, and other diseases affecting the brain lacked hGH and often, other hormones made by the pituitary gland. A shortage of the hormones that regulate the adrenal glands can cause many health problems. It can also lead to death from adrenal crisis. This tragedy can be prevented.
- What are adrenal hormones? The pituitary gland makes many hormones, including growth hormone and ACTH, a hormone which signals the adrenal glands to make cortisol, a hormone needed for life. If the adrenal gland doesn't make enough cortisol, replacement medications must be taken. The most common medicines used for cortisol replacement are:
- What is adrenal crisis? Adrenal hormones are needed for life. The system that pumps blood through the body cannot work during times of physical stress, such as illness or injury, if there is a severe lack of cortisol (or its replacement). People who lack cortisol must take their cortisol replacement medication on a regular basis, and when they are sick or injured, they must take extra cortisol replacement to prevent adrenal crisis. When there is not enough cortisol, adrenal crisis can occur and may rapidly lead to death.
- What are the symptoms of lack of adrenal hormones? If you don't have enough cortisol or its replacement, you may have some of these problems:
- feeling weak
- feeling tired all the time
- feeling sick to your stomach
- no appetite
- weight loss
When someone with adrenal gland problems has weakness, nausea, or vomiting, that person needs immediate emergency treatment to prevent adrenal crisis and possible death.
- Why are adrenal hormones so important? Cortisol (or its replacement) helps the body respond to stress from infection, injury, or surgery. The normal adrenal gland responds to serious illness by making up to 10 times more cortisol than it usually makes. It automatically makes as much as the body needs. If you are taking a cortisol replacement drug because your body cannot make these hormones, you must increase the cortisol replacement drugs during times of illness, injury, or surgery. Some people make enough cortisol for times when they feel well, but not enough to meet greater needs when they are ill or injured. Those people might not need cortisol replacement every day but may need to take cortisol replacement medication when their body is under stress. Adrenal crisis is extremely serious and can cause death if not treated promptly. Discuss this problem with your doctor to help decide whether you need more medication or other treatment to protect your health.
- How is adrenal crisis treated? People with adrenal crisis need immediate treatment. Any delay can cause death. When people with adrenal crisis are vomiting or unconscious and cannot take medicine, the hormones can be given as an injection. Getting an injection of adrenal hormones can save your life if you are in adrenal crisis. If you lack the ability to make cortisol naturally, you should carry a medical ID card and wear a Medic-Alert bracelet to tell emergency workers that you lack adrenal hormones and need treatment. This precaution can save your life if you are sick or injured.
- How can I prevent adrenal crisis?
- If you are always tired, feel weak, and have lost weight, ask your doctor if you might have a shortage of adrenal hormones.
- If you take hydrocortisone, prednisone, or dexamethasone, learn how to increase the dose when you become ill.
- If you are very ill, especially if you are vomiting and cannot take pills, seek emergency medical care immediately. Make sure you have a hydrocortisone injection with you at all times, and make sure that you and those around you (in case you're not conscious) know how and when to administer the injection.
- Carry a medical ID card and wear a bracelet telling emergency workers that you have adrenal insufficiency and need cortisol. This way, they can treat you right away if you are injured.
Remember: Some people who lacked growth hormone may also lack cortisol, a hormone necessary for life. Lack of cortisol can cause adrenal crisis, a preventable condition that can cause death if treated improperly . Deaths from adrenal crisis can be prevented if patients and their families recognize the condition and are careful to treat it right away. Adrenal crisis is a medical emergency. Know the symptoms and how to adjust your medication when you are ill. Taking these precautions can save your life.
National Endocrine and Metabolic Diseases Information Service
The National Endocrine and Metabolic Diseases Information Service is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health, which is part of the U.S. Department of Health and Human Services.
The NIDDK conducts and supports biomedical research. As a public service, the NIDDK has established information services to increase knowledge and understanding about health and disease among patients, health professionals and the public.
This publication is not copyrighted. The NIDDK encourages users of this publication to duplicate and distribute as many copies as desired.
Page last updated September 24, 2012
Monday, September 15, 2014
Hollywood has it wrong: I'm a teenager with an illness, and it's not glamorous at allhttp://www.washingtonpost.com/opinions/hollywood-has-it-wrong-im-a-teenager-with-an-illness-and-its-not-glamorous-at-all/2014/09/12/b9154a7e-38f9-11e4-8601-97ba88884ffd_story.html
Sunday, September 14, 2014
Friday, July 4, 2014
Hug your Cushie: What is getting an MRI like?
I patiently watched that video. It all sounds pretty doable. Pleasant even! Well, why do I associate this machine with a torture chamber?
I have been getting MRIs every six months for seven years now. I used to convince myself that it was no big deal. It was, after all, just what had to happen as a patient with pituitary tumors.
Stoic. I'm always trying to be stoic.
The last time I went for my pituitary MRI with dynamic protocol, I asked my dear friend Melony to tag along as "moms play date." I promised her dinner afterwards, but one condition: she could not make me laugh in there. Melony held on to my leg the whole time. At the end, she asked, in tears, how I can stay so strong every time? I told her that I really am not! I hate that machine! I hate the noises! I hate the head contraption that keeps my neck from moving. I hate lying in a tube where my whole body is touching the bottom and sides of the tube, with only four inches of space between my chest and the top of the MRI tube. I hate MRIs. There. I said it.
Thursday, July 3, 2014
to review your test results.
Monday, June 30, 2014
Sunday, June 29, 2014
*~* Your Family Photo Facebook Album Could Help Doctors Diagnose if Your Child Has a Rare Genetic Disease *~*
Saturday, May 17, 2014
Thursday, April 24, 2014
ASSIGNMENT 13: The 'pain' of feeling caught in the middle
Monday, April 21, 2014
Why Doesn't My Endocrinologist
Know All of This?
Sunday, April 20, 2014
5 Things to Do When Symptoms Are Not 'All in Your Head'
Saturday, April 19, 2014
Dr. McCutcheon is a wonderful neurosurgeon. He performed my second pituitary surgery.
Dr. McCutcheon has helped many Cushing's patients by understanding the disease and listening to his patients.
Dr. McCutcheon is a professor at world-renowned MD Anderson Cancer Center located in Houston, TX.
Friday, April 18, 2014
Robin, blogger at http://survivethejourney.blogspot.com, wrote the post that is true today as it was all those years ago (sadly.)
Thursday, April 17, 2014
Wednesday, April 16, 2014
Female Patient found Unconscious with Syringe Nearby - Case of the Month
Robin, the Cushie survivor who blogs at http://survivethejourney.blogspot.com, created all the graphics for us to share during Cushing's Awareness Month. Thanks Robin!
Friday, April 11, 2014
I enjoy a good obstacle course game show. As a child, I fell in love watching Battle of the Network Stars. I DVRed Wipeout and giggle throughout. I am such a Ninja Warrior fan, I can't even tell you.
I didn't make the connection to that interest until I saw the cartoon below posted by my friend, the incomparable MaryO, founder of www.cushings-help.com.
I see this cartoon, and it is clear to me very quickly. That reality looks easy. That reality is doable. That is stuff people can get through. We all expect that. Life has ups and downs. We made it through childhood, we get that.
The reality looks like a cake walk compared to Cushing's diagnosis and treatment. That, I was never prepared for.
After fighting for seven years from first seeing the word CUSHING'S in March 2007, I have been on the long and circuitous path to diagnosis, pituitary surgery, rediagnosis, pituitary surgery 2, rediagnosis, medical therapy with ketoconazole, rediagnosis, bilateral adrenalectomy, and now bimonthly lab work.
I must determine the optimal balance of 20 to 25 hormones despite a damaged pituitary gland and zero adrenal glands. I have no functioning master gland, no hormone control center. I take pills, use patches, and slather gels multiple times a day. Lather. Rinse. Repeat.
So if I were handy or artsy in more than one cell, I would draw up a new cartoon to resemble my reality -- and many Cushies' shared reality -- to win good hormone health.
- Drops would fall back down to or below starting point
- Fewer ladders
- Ferocious beasts chasing us back to start or keeping us in the same spot for weeks and months, some hidden so we never see what we are fighting
- More creeks without paddles
- Hidden quick sand and tar pits
After every obstacle imaginable, take that course and duplicate five times. No. TEN TIMES. That is the life of a Cushie.
In my cartoon, the finish line flag has hearts in each square and a line of friends pinning blue/yellow medals of honor and bravery upon each other. I'd give each one the red badge of Moxie.