Sunday, March 19, 2017
Today my family has a service dog, Tux. He will be trained to detect cortisol for me and blood sugar for my husband who is a type 1 diabetic.
Follow along this new journey. Go like our Facebook page, called Fight Cushing's with Moxie.
And stay tuned, because April is Cushing's Awareness Month, and my 10th anniversary with Cushing's. Lots of new stories coming up.
Friday, March 3, 2017
Friday, January 20, 2017
A few of my friends are in the battle of their lives. Convinced they have Cushing's, these patients have played the test-and-wait game, for a long, long time. They can barely see themselves in this life that is focused just on the bare necessities (food, care for kids, our self care gets skipped) and SLEEP. A lot of sleep. All the times you can't go to sleep because of daytime duties and responsibilities and wide awake when it is actually time to go to sleep. Add doctors dragging their feet and you slowly to diagnosis and high cortisol to the mix. Cushie just want to give up!
In case you haven't read it lately, here are my moxie set of tips to steady your feet and get yourself diagnosed.
I haven't changed one thing on that post in the nearly nine years since I wrote it.
It pains me to see how relevant it is today-- patients still suffering too long and doctors too sure of their knowledge to admit the patient may have something rare.
The world of information has changed since that 2008 post, too. I started to research cushing's on the internet in March 2007. I didn't use Facebook back then. A simple google search resulted in more posts about dogs and horses than people.
(🐶 + 🐴) x info > 👩💻
So be happy that information is available and keep fighting Cushing's with Moxie.
Tuesday, January 17, 2017
Saturday, December 31, 2016
Thursday, April 7, 2016
- Obesity (lose weight, lose symptoms)
- Polycystic ovarian syndrome (PCOS)
- Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)
- Back and muscle pain
- Blurred vision, visual field loss, double vision
- Chronic fatigue syndrome
- Dry, oily, or sweaty skin
- Impotence or infertility
- Joint pain, joint/bone abnormalities
- Muscle weakness, carpal tunnel syndrome
- Temporomandibular joint/TMJ/jaw joint pain
- Thyroid imbalance or "slow metabolism"
What your symptoms really mean if doctors put them all together - CUSHING'S
- Facial redness
- Rounding of the face (moon face)
- Unexplained weight gain around belly
- Buffalo hump, or hump on back of neck
- Pink or purple stretch marks
- Thicker or more visible body and facial hair
- Muscle weakness (difficulty standing or climbing stair)
- Extreme fatigue (no amount of sleep is enough)
- Depression, anxiety and irritability
- Pink, red or purple stretch marks along your abdomen, arms, or thighs
- Thin and fragile skin that bruises easily
- Slow healing of cuts, insect bites and infections
- Bone thinning (osteopenia, osteoporosis), easily broken bones
- Recurrent infections
- Sleep disturbances, night sweats, awake at midnight or 4 am
- High blood pressure
- Diabetes mellitus
- Irregular or absent menstrual periods in females
- Clotting disorder
Wednesday, April 6, 2016
772,998 page views.
|2016 not 2015. Mistake from a Cushie Mind.|
I can easily say that when I started this blog eight years ago that I had no idea how far my typed words would go. At the time, it was my little place to put down my knowledge about a disease that plagued me but also a space to share my frustration when I didn't have anywhere else to put it.
I look back at the 510 posts I have made, and I have mixed emotions.
I stand proud that I have a collection of myself that I can share with all of those who seek understanding and assistance tackling a monster of a disease as well as a medical community that claims to have never encountered that beast before.
I am happy that my work has helped so many people that my eyes overfill with joy when an email (moxiemelissa atsign gmail dot com) comes through thanking me for maintaining this blog and saving a life.
I feel accomplished that I put so much work into a blog even when I wasn't feeling well. I posted many times from my iphone because sitting upright hurt my back and joints too much. I often lost sleep and time with my family so that I put up content in an never-sufficient-effort to save people from this destructive disease. I felt a huge responsibility to keep posting.
Among these many posts, I can't help but notice all that I didn't say. I see gaping holes of my life story that I never posted here.
- I was too sick to type.
- I was too disappointed to share.
- I was not with it enough to formulate sentences and cognitively too confused to make sense of lab results and doctors appointments.
- I didn't know what to do to cure this disease or even help myself. Many times, I was just too hopeless to share.
Putting the disappointment I was facing right here on this page was so overwhelming that I just couldn't do it. If I wrote it down, it would really be as bad as it was when it all swirled around my mind. In those times, I remained silent. My social anxiety heightened, and I clammed up. I tried to scrape together a life with whatever leftover energy I had left after the grueling fatigue -- I can assure you that there wasn't much left. I would try to forget Cushing's and I got caught up with the daily rhythm of school for my child, work for my husband, cleaning and cooking and sleeping. Every day I knew that anything expected of me other than sleeping was too much for me to handle. Cleaning and cooking just never seemed to happen. Cushing's rang in my ears, literally, thanks tinnitus common with pituitary tumors, and reminded me every day what I had and what I tried to escape. Endless doctor appointments, scans, lab work, and daily medicine never let me forget that I was in the middle of a war against my own body.
This isn't the most uplifting start to a month of awareness, but it's a start nonetheless.
Thursday, February 18, 2016
Wednesday, November 11, 2015
Friday, September 4, 2015
|Copyright Robin and Pituitary Network Association, 2015.|
"Cushing's definitely made me the person I am today, and even though the experience was terrible, I am proud of who I am now." ~ Robin, 18 years old
I do wish that the PNA would have featured a story of someone who required multiple surgeries before getting better. Highlighting patients who had one pituitary surgery and got their cure is not representative of the patients who experience Cushing's. I know far more people who required multiple surgeries than those who were cured by one. In my post entitled Cushie Warriors, I begged those with a Cushie in their life to support them, as many of them required multiple surgeries and treatments and still may not have a cure. It seems odd when so much information is out there about how pituitary surgery cures a Cushie, and it was important to let the few that remain part of the Cushie's support system to know that their Cushie-who-can't-get-well is not the exception but the rule. When I collected that patient treatment information and posted over four years ago in April 2011, there were already 50 people on the list. Kinda high for a rare disease, right? I have an updated list of Cushie Warriors that tops over 125. That sure is a lot of Cushies out there who are trying to get people to understand that we are really sick and we have to go through a lot of testing to be rediagnosed in order to have multiple surgeries. It would further understanding for the complexity of Cushing's treatment if a national organization like PNA could help us get those stories out.
|You are a doctor. Have a heart.|
Wednesday, April 1, 2015
Sunday, March 15, 2015
Cushing's was featured this morning on the Today Show's Medical Mysteries three-part series.
Hooray for national exposure for Cushing's!
Donelle shares our desire to spread the word and increase patient awareness about his diagnosis. Read the story and watch the video to see yet another example of how devastating Cushing's can be.
Monday, March 2, 2015
17 things you'll only understand if you have a rare disease.
Sunday, January 25, 2015
- 1Departments of Medicine and Neurosurgery, Stanford University School of Medicine, 875 Blake Wilbur Dr MC 5826, Stanford, CA, 94305, USA, firstname.lastname@example.org.
Friday, January 23, 2015
Monday, December 22, 2014
I'm please to see this recent article from December 2014 that addresses both questions. And yes, emotional stress can lead to adrenal crisis!! Just like we Cushies, who adjust our medication daily to keep up with our lives, said.
High rates of adrenal crisis seen in patients with chronic insufficiency
- December 8, 2014
Tuesday, December 2, 2014
Well, what do I say? That is a long and complicated answer. I have been sick for decades. How do retell that long story? How much does she want to know? How much should I drop in the lap of an unsuspecting cousin?
Right that moment, I began to tap out a reply on my iPhone. I just wrote and wrote. I guess you tell your story by just spitting it all out. You just tell the whole thing -- without shame, without embarrassment. To know me is to know the story of my life. It is long and complicated but it is important. I am important. Sick or well, I am important.
I don't want sympathy. I don't need pity.
I only want compassion that is given freely to any other human. What about the ones you love as friends or family?! I only want the compassion that I give to be returned. I don't like Cushing's. I hate it, in fact. However, I know I love my life with true intentions. I give compassion more freely now that I have lived this life. I want people to not be afraid of me and to stop avoiding me because they don't understand my disease or my life now. For those reasons, I told my story with truth and honesty.
I had two tumors on a part of my brain called the pituitary. It hangs below the brain and controls all hormones or chemicals in the body. It is called the master gland. Well, I was very sick for at least a decade and didn't know why. In April 2007, I found the disease Cushing's on the computer. I read and read. I cried. Instantly, I knew I had this disease. So for the next seven years, I have been testing for diagnosis and re-diagnosis to convince the doctors and surgeons I indeed had this super rare disease where the pituitary hormone ACTH works with the hormone cortisol from the adrenal gland to respond to stress in a loop. We know now that Cushing's is not as rare but rarely diagnosed. I had my first pituitary brain surgery in June 2009. The neurosurgeon went through my nose to the center of my head where the pituitary sits. The tumor was removed but I kept producing the hormone cortisol in excess, and that hurt all my organs and kept me very sick. I tested again. I sought help from a Cushing's specialist in Los Angeles, CA after many friends online finally got help from him. My second pituitary brain surgery was in April 2011. Again, tumor and extra cells under the pituitary were removed, but I still felt sick and was not cured. I tested again to confirm cortisol excess in my body. Indeed, I still had Cushing's and my results kept getting higher each time I tested. In August 2012, I tried a medication ketoconazole to lower my cortisol. That did the job but it pushed the cortisol I needed to live every day too low, and I was bedridden and could not wake up during the day. I had to take Ritalin or a stimulant in the am in order to counter the effects of lowering my cortisol at night which left me little cortisol to get through the day. It was a daily struggle to take care of myself and my small child at home. Cooking, cleaning, and self care were impossible. I used every bit of energy to care for my child and I had little left to do anything else. I struggled with this every day until October 2013. I had enough. The Food & Drug Administration (FDA) put limitations on long-term use of Ketoconazole due to the prevalence of liver damage. The drug had already been outlawed in the European Union. I waited as long as I could but I couldn't wait any longer. Cortisol was destroying my life and my body. I began testing for excess cortisol in early November 2013, and my cortisol levels in urine, blood and saliva were the highest I had ever had and definitely proved that my body was flooded with cortisol. It was time to end cortisol production once and for all. On New Years Eve 2013, I had a bilateral adrenalectomy or BLA, the removal of both adrenal glands that produce cortisol. While this fixed my Cushing's disease, it gave me Addison's disease. I don't produce excess cortisol. Now I produce no cortisol. The body needs cortisol! You make it and don't even know about it! I will take medication daily for the rest of my life to replace the hormones not made by my damaged pituitary gland. I take medication to replace the hormones my adrenal glands make. If I forget these adrenal medications, I could die within 24 hours. The body must have cortisol to function. I must take my meds daily and at the same times. I have struggled hourly and daily to find the right amount of medication that matches my body's needs. I get blood tests often to check my hormone levels. It has been very difficult for me, my husband, and my young daughter, and even my parents who come from out of state to help when they can by staying a few weeks to a month to help my family with the daily things I can no longer do because of the damage that Cushing's and high cortisol has done. Then and now, I suffer from muscle weakness all over my body, bone pain, back pain, extreme fatigue, osteopenia, anxiety, depression and other mental disturbances, insomnia, and other things I can't even remember I suffer from because my brain is always foggy.
What I know for sure is that I am a fighter. I will continue to fight for myself and my family who supports me daily with hugs, love, and laughs. I am an advocate to help people get diagnosis and treatment sooner. I have maintained a blog since 2008 at http://cushingsmoxie.blogspot.com because back in those days, an internet search for Cushing's produced more results for dogs and horses than humans. Well, the blog is a success with over 600,000 hits total. Many patients have contacted me through the years, and we have gotten them to diagnosis and surgical treatment. I speak to hundreds of patients a week to answer questions about testing, surgery, and surviving a life and body flooded with cortisol. They learn from me and I learn from them. This disease is very complex, very nuanced. The story is different but the damage is the same. As patients, we take care of one another. We provide a safety net where none existed before. We are ill but united. As I move forward every day, I know I am doing my best. I take a set amount of cortisol and aldosterone replacement daily. If I get stressed, my body uses up that set amount and my body has no cortisol to run basic body functions. Therefore, I avoid stress at every turn. I don't watch the news. I stay away from people who bring me down. I am fighting to fill my life with more joy and less junk. I'm looking for a sort of bliss that comes after years of being in bed, not being myself, not doing what I wanted to do. My thoughts and actions focus only on that: BLISS.
Monday, October 27, 2014
Well, as each day goes by, a new Cushie gets diagnosed and heads to surgery. One friend, Heather, has been worried about decision to undergo pituitary surgery. She mention more anxiety and growing concerns as the surgery day approaches.
I have personally been at the "Well, what's gonna happen to me now?" stage more than once.
I have been diagnosed with Cushing's FOUR times in six years. I endured the insanity of consecutive daily midnight blood draws, midnight saliva tests, and urine collections FOUR time periods in my life. I had to determine the best option to get rid of this tenacious cortisol beast that is Cushing's FOUR times. *It ain't no picnic.*
TESTED MY CORTISOL
12/2007. First diagnosis -- pituitary surgery; delayed while I tried to become pregnant.
09/2008. Darling baby arrives.
06/2009. Pituitary surgery #1.
TESTED MY CORTISOL
04/2009. Pituitary surgery #2.
TESTED MY CORTISOL
07/2012. Started ketoconazole.
TESTED MY CORTISOL
12/2013. Bilateral adrenalectomy.
Each time I tested, I faced questions I already knew would hang over me: What treatment would I face next? Will this finally work? Only each time, a decision had to be made, and I had to follow through with that decision all the way to surgery day.
As the years go on, uncertainty gets worse. Desperation sends your mind racing, while bleakness takes residence in your heart. You know the choices. You know which of your friends it worked for. As you realize you have already tried nearly everything, you also realize there are just not enough appealing choices left.
So I tell my friend to do what she can, but take a break from the worry.
"Your body is trying to trick you. Cortisol ramps up towards a stressful event like surgery, and doubt and anxiety build. Don't let it fool you. The month before surgery is always the worst. Cushing's grabs a hold of us and swings us around like a dog does his chew toy. After surgery, you will realize how clear your mind can be again once the cortisol faucet is shut off and the overflowing tub is drained of unneeded cortisol.
May I suggest doing something for yourself once a week until surgery?
Pick a day and do it.
Movies. Favorite dessert place. Buy a new purse. Go buy a good book for the hospital... Fiction ... No self help books! The days will fly by. You will be better before you know it."
With every Cushie we send to surgery, the community collectively holds its breath until the Cushie is safely through surgery and out of the hospital. We take a deep but quick breath, and we hold it again until we see the signs of excess cortisol reverse in their body over the coming months and years. Will that surgery cure them? We just never know who will make it out of the disease race track on lap 1, 2, 3, 4, or more after these surgery pit stops. "We elders just can't bring ourselves to say, Kid this may be it, or you may be back at the plate for another turn."
Only time will tell.
Saturday, October 18, 2014
Now there are two FDA-approved drugs available for those Cushies who are not a candidate for a/another surgery but still remain uncured -- Corcept's Korlym and Novartis' Signifor. Two years ago, there were none.
The long-term benefits are clear.
The entire Cushing's community benefits from Big Pharma dollars spent to create what we all want -- disease awareness, earlier diagnosis for all patients, and better treatment options.
To this end, I want to share the fist video that I have seen from Novartis to further this shared mission. It is well done and quite informative.
Share the link and save a life.
(I tried to embed this video but this action is forbidden by the Novartis youtube channel. Click through. It is an informative video.)
Sunday, October 12, 2014
Quick, Easy, Inexpensive Cortisol Testing Should Soon Be Available on All Smartphones