My name is Laura, and I AM the face of Cushing’s. Or at least one of many.
Today, April 8th, isn’t just another Wednesday, or “Hump Day” as some people call it. Today (and every April 8th) is Cushing’s Disease Awareness Day.
Cushing’s came about as a diagnosis in 1932, and was discovered by a neurosurgeon named Harvey Cushing:
If it weren’t for this man, many people, including myself, would most likely not be alive today. Cushing’s is a rare endocrine disorder that can be fatal if not treated, or if left uncontrolled. Many people go for months or years without getting the correct diagnosis, and the symptoms don’t just get better on their own.
Having been through 3 transsphenoidal pituitary tumor resection surgeries (brain surgery through my left nostril), 1 mega dose of radiation to my brain, a medication trial, numerous doctor and out of town hospital visits, >100 vials of blood drawn, >20 MRIs and CT scans, the collection of several gallons of my urine, 6 weeks of 2x/day saliva collection, and the removal of my adrenal glands, I can comfortably say that I’m now living without Cushing’s. However, getting to this point wasn’t easy or quick, but I made it.
There’s not a whole lot of information out there floating on the interwebs, libraries, doctors offices, or even in the minds of most doctors. Cushing’s is usually just a passing thought for most medical providers, as it’s a rarity that they’ll ever treat someone with Cushing’s. Because it is so rare, there’s also not a lot of research about the disease, nor are there many resources for patients and their families, or people who want to know more about it.
The drug company Novartis has made important strides in making educational materials available for patients living with Cushing’s and for the general public to gain a better understanding of this strange disease. This year, they have themed Cushing’s Disease Awareness Day to ask, “What Would Harvey Cushing Do?”
Novartis also published this short video about Cushing’s Disease 2 years ago for this special day:
As with any disease or condition, it’s important to get a conversation started about it. Whereas rare endocrine diseases and disorders probably aren’t something you’d talk about with your coworkers around the water cooler, why not bring it up? If more people become aware of Cushing’s Disease and all that it entails, maybe more people will be diagnosed in the future. Or even be more assertive with their doctors regarding their own bodies, lives, and health.
Back to my last post regarding the statement “When you hear hoofbeats, think zebras”, it is a rendition in the rare disease community of the phrase “If you hear hoofbeats, think horses not zebras”. That statement is used in the medical world to say that more often than not you’re diagnosing something common (horses) over something exotic (zebras). But in the Cushing’s community, things aren’t always straightforward or black and white. Our cases may be complicated, but our voices deserve to be heard, and our bodies deserve to be treated correctly and healed properly. Also, zebras are phenomenal animals :)
As you continue about your day today, ask a coworker, friend, relative, spouse, significant other, or any person of your choosing if they’ve ever heard of or known someone with Cushing’s Disease. Let’s talk about this issue, world!
For those of us caught up in the world of Cushing’s shenanigans, April is a month to blog about awareness. A seemingly rare disease, but perhaps it’s just not diagnosed as much as it ought to be, Cushing’s Disease can be fatal if it goes untreated. It sometimes takes years to get a correct diagnosis, as many medical professionals brush it off as the patient being obese with high blood pressure on their own accord.
What might seem like shocking information, Cushing’s Disease has a mind of its own. It doesn’t care how active you are, it doesn’t care what your diet looks like. It doesn’t care what you do for a living, nor does it care what sex you are. It doesn’t care about much about any or all of your personal life, and it’s just random how folks get cursed with this horrible disease.
**FUN FACT: I had never even heard of Cushing’s Disease, until it was on the table as a potential diagnosis**
As a survivor of Cushing’s Disease, I can tell you that it’s not a fun entity to have lived with. It messed up my life for several years, and I’m talking about every single ounce of my being. Broken down, Cushing’s is caused by an excess production and exposure of the hormone cortisol in one’s body, which is responsible for life itself. Cortisol is produced in the adrenal glands, which sit atop your kidneys, and I call them your kidney party hats, as they kind of look like little hats on top of a big bean-shaped organ.
I had an ACTH-secreting pituitary tumor that caused my excess cortisol, or hypercortisolism if you’d like to get technical. The tumor was called an adenoma, and I had a macroadenoma, meaning it was larger than your average pituitary tumor. ACTH stands for adrenocorticotopic hormone (what a mouthful!), and it is produced on the pituitary gland in the brain. It signals your adrenal glands to produce and release cortisol. Other folks who’ve had Cushing’s have a tumor on an adrenal gland, or in rare circumstances, on their lungs. Sometimes, the tumor is undetectable, and to find out where the excess ACTH is coming from, those people have to have a procedure known as an IPSS (inferior petrosal sinus sampling), wherein a catheter is snaked from one’s groin up to the brain to determine which side of the pituitary is producing the excess ACTH.
The diagnostic workup to conclude that one does in fact have Cushing’s Disease isn’t as simple as a blood test. Cortisol is found in the blood, saliva, and urine of everyone, and testing covers all of those bases. Cortisol ebbs and flows in peaks and valleys during the day and night, so there’s a specific time to measure the specimen in each bodily fluid. Blood is best measured at 8am, whereas urine is a 24-hour collection (in a bright orange 3 liter sized jug), and saliva is measured at midnight over the course of 3 nights. You can also do a dexamethasone suppression test, which consists of taking a pill then getting blood drawn the morning after. If ACTH and cortisol levels are high, that is indicative of a pituitary tumor. If ACTH levels are low and cortisol is high, that is indicative of an adrenal mass.
If you’re not excited yet, just wait, there’s more! A potential Cushing’s patient also needs an MRI of their pituitary, or a CT scan of their adrenals or chest. It’s not as simple as urinating on a stick, just once or twice to get a confirmatory diagnosis. All these tests combined can take quite awhile. Oh, and you have to see a specialist doctor who is an Endocrinologist, since this disease tampers heavily with your endocrine system.
Symptoms of Cushing’s include:
- Obesity (with rapid, uncontrollable weight gain)
- Pay special attention to the fatty deposits in one’s face (moon face) and on the back between the shoulders (buffalo hump), and also on the abdomen.
- High Blood Pressure
- Purple Striae (stretch marks) across abdomen, breasts, thighs, and arms
- Diabetes or Insulin Resistance
- High Cholesterol and Triglycerides
- Irregular or Lost Period in women
- Depression, Anxiety, Irritability
- Muscle Weakness
- Thinning of Skin and Propensity to bruising
- Slow Healing on Insect Bites/Cuts/Wounds
- Hair loss
- Increased Facial Hair in Women
- Bone Density Loss
- Cognitive Impairment
*Not everyone who presents with Cushing’s Disease will have all of these symptoms, but some people will.
I should also mention that there is Cushing’s Syndrome, which is identical to Cushing’s Disease, just without a tumor present.
This post is to be continued, and as they say in the Cushing’s Community (and that of other rare diseases), “When you hear hoofbeats, think Zebras.”…You know your body better than anyone else, and I’ll explain this saying, along with other fun things in my next post!….but in the meantime, if you see something, say something, when it comes to your own body.
Happy New Year to Ewe!
I hope 2k15 is off to great start for everyone out there. Isn’t it wild that year 2000/Y2K was 15 years ago already?
Before the turn of the New Year, I had noticed a bit of weight loss. Clothes I had not been able to wear in over a year were suddenly fitting (I try to not weigh myself at home and let that be up to the doctor whenever I go, so I wasn’t sure how many lbs had come off.). In my mind, this could mean one of two things: I was experiencing positive results from my bilateral adrenalectomy and Cushing’s was on its way out, OR I had an onset of diabetes.
Dun dun dun…
However, it’s with a clearer mind and happier heart that I start this new year, knowing that I am living without Cushing’s. This medical saga has been about 4 years (possibly much longer) in the making – and I can finally say that I no longer have that horrid disease. I went to see my endocrinologist at the Cleveland Clinic in SoFlo a few weeks ago, and upon review of my labs and us talking, he said that things are looking good and going as planned following my latest/greatest surgery. My follow-up with him is next December, with labs drawn at the halfway mark in June. What the what. That means only 2 planned hospital visits in ONE YEAR’S TIME (an MRI/appt with Dr. McTractive at Shands in April & Cleveland Clinic next December) – which is unheard of for my life these past few years. But I’ll take it. And put that on repeat.
I was in Ft. Laudy as a solo traveler, and I had some time to kill after my appointment, so I found a fantastic hole-in-the-wall Cuban place, with the help of Yelp. It was a walk-up, tiny place, with seats at a bar right on a busy road. A limited menu of a few sammies, delectable coffee, and smoothies (hence the array of blenders), but what more would one need?
After a filling and overly satisfying meal, I strolled on the beach for a bit. I’ll know next time to bring a bathing suit, as there were many people swimming and laying out in Mid-December. A perk of living in or visiting South Florida.
That good news segued into a fruitful holiday season, albeit a tad rainy leading up to Christmas. Tallahassee saw record rainfall, I think getting close to 8″ in one day.
Dreariness aside, I got to see many out of town friends and some family, spend quality time with my in-town family, and overall, have a memorable time.
But just so y’all know, the struggle to put an adornment on my dog’s head is real:
And then Cushing’s-free me made a random post-holiday decision to get my hairs dyed. The result:
Looking back over the past few years and my struggle with a medical condition that I was not able to control, I realize I’m damn lucky to be alive. I won’t get all sappy, but to have a semi-clean bill of health and have Cushing’s aside, is an incredible feeling. Three years ago, I managed to get out of the hospital in time to be home for Christmas, after having had my second of 3 transsphenoidal pituitary tumor resection surgeries (aka brain surgery). Cushing’s came back after that, and then again. And again. To be able to say that I am on the mend and mean it, is empowering.
The power of positive thinking, of loving/supportive family and friends, health insurance, modern medicine, skilled doctors and nurses, and the ability to live a relatively normal life without an important little body part are all awesome. And getting a quarterly newsletter in the mail about the latest and greatest in the Cushing’s Community is awesome as well, as it is something I look forward to. Knowing that there are others out there with a similar story is super helpful, as this is a hard condition to fully understand.
I’m thankful to be alive, and to be able to share my story with others. This blog may seem like one of those holiday letters that some families send out, where they boast about what everyone has accomplished in the past year/toot their own horns, etc…but it’s just a way for me to tell it like it is. I’ve had a few people reach out to me after having read my blog. Mission accomplished – I’m here to help others who may have Cushing’s and have not yet gotten a diagnosis, or to help anyone with a rare disease know that they’re not alone.
From the time of my last post until now, I acquired a beautiful baby nephew and I’m so thankful I’ll be able to watch him grow up:
2015 is going to be the year that I get my groove back.
Until next time, I’ll leave y’all with a cup of herbal tea that looks like strawberry milk:
As always, I appreciate everyone’s continued love and support. May 2015 be a great year for us all.
Today marks 6 months since I had my adrenal glands removed. The results? Nothing crazy so far. Have I dropped tons of weight? Nope. Am I feeling better? For the most part. Has my skin turned orange yet? Nah.
There’s something called Nelson’s Syndrome that affects a small percentage of people who have had their adrenals removed. I’m not exactly sure what it does to a person, besides make them look tan with an orange tint (think Oompa Loompa, although I don’t think it’s that extreme…) Since I had radiation to my pituitary ~2.5 years ago, that apparently protects me against getting Nelson’s Syndrome, which is real nice. However, last Friday, I started turning violet (Violet):
Just playing, it was my Halloween costume – I thought I’d embrace the figure that Cushing’s left behind, and go as Violet Beauregarde from Willy Wonka & the Chocolate Factory. It was a last minute costume using items I oddly had on hand…and I must say that it worked out pretty well!
My endocrinologist did say that it would take at least 6 months for my body to fully adjust to not having its glands, but nothing spectacular has happened yet today. I realize that one can’t rush progress, and that all bodies heal differently. I’m not worried that I’m not 100% better yet – things like that take time. However, I haven’t let my adrenally insufficient state slow me down.
So, what have I been doing? My dog Max is very curious and asks a lot of questions.
- I lassoed a cow in Texas
- I saw a country boy shake it for me (and thousands of others)
- I hiked to a beautiful waterfall in South Carolina
- I witnessed Jimmy Buffett’s bare feet
- I made cupcakes that were really cute
- I touched a pregnant woman’s belly (who just so happens to be carrying my nephew!)
But most importantly, I donated to a very worthwhile cause for a dear dear friend who will be running in the 2014 Philadelphia Marathon on November 23rd in Philly, PA. My amazing friend, Kate, currently lives in Haiti and is working for Partners in Health (PIH) as a member of their mental health team, to bring a community-based approach to provide mental health services for the people of Haiti. There are currently less than 12 psychiatrists in the entire country with a population of 10 million.
All of the proceeds that Kate and her teammates raise for the marathon will go to PIH. If you or someone you know has the ability to contribute, please do so, and feel free the share the link below with your family, friends, coworkers, Uber drivers, doctors, frenemies, lovers, etc…The money raised through this page will go towards treating vicious diseases like malaria and tuberculosis, building homes for poor families, helping farmers increase their crops, and treating malnutrition in children. Every dollar helps :)
Kate has been training in Haiti, where the conditions and terrain are quite different from that of Philadelphia. Kate is used to living outside of the United States, as she and I met as Peace Corps Volunteers in Ethiopia back in October of 2009. We were placed as random roommates for a few days in the very beginning, and hit it off basically before we even met each other (she may have stalked me on the Facebook page). Anywho, Kate’s one of the most incredible individuals I’ve ever had the pleasure of knowing, and she just so happens to be incredibly talented. She tackles whatever she sets her mind out to do, and I know she’ll finish running those 26.2 miles in a few weeks with a huge smile on her face. I tip my hat to anyone who can do such amazing feats! Get it, K8.
As always, thanks for reading, and I hope this message finds everyone well. Happy Fall to y’all!
It was recently brought to my attention that there is something floating out there on the interwebs that could possibly one day save my life, or the life of someone like me. I, along with several other people, lack adrenal glands (or have adrenal insufficiency) and those glands are crucial to one’s survival.
For the remainder of my life, I have to take replacement hormones (by way of steroids) that were once produced by my old adrenal glands. The glands are responsible for the production of the hormones cortisol and aldosterone, and both play a significant role in one’s ability to stay alive.
Now fast forward to me (or someone else who lacks adrenals) getting into a bad accident or having an illness where I am brought to the emergency room. Aside from endocrinologists, not many doctors or medical personnel know much about rare endocrine disorders, and therefore there’s not exactly a standard protocol for them to follow in this type of situation. Someone in my situation can have what is called an “adrenal crisis“, wherein the individual needs a mega dose of steroids ASAP in order to avoid further damage to oneself, or possibly even death. A body with normally functioning adrenals automatically produces excess cortisol to fight off infection or in response to any type of trauma.
I know this sounds extreme, but I am living with an extreme condition that is manageable with replacement steroids. However, I.C.E. (in case of an emergency), things can change rather quickly. Please please please consider opening the link I’ve posted below – it’s a petition to get the type of help that people like myself need when faced with a crisis. If you agree that it could save a life or 239764598 in the future, please sign your name. Many more signatures are needed by October 9, 2014. Also, feel free to share the link with anyone you know who has a heart and internet access.
Thank you for your time and consideration,
Because to be Kicking it With Cushing’s, well:
So that’s what I think I’m doing, and have no reason to believe otherwise…I had a follow-up with my endo down in SoFlo this past June 16th, and he said so far, so good.
A couple months later, I had some labs drawn for him on September 2nd, and again, he said things are looking mighty fine. I’ll go for my next appointment on December 15th, and see if all is still well in a few months. I take my meds and supplements as prescribed, and have yet to experience an adrenal crisis or to use my SoluCortef injection with that thick ass needle. Due to the radiation I had on my pituitary about a year and a half ago, I have to get all of my pituitary hormones checked every so often, because in 2-5 years from the date of my stereotactic radiosurgery, it’s quite likely that I’ll lose all function of my pituitary. It’s neat that it functions still with only its stalk and 1/3 of the gland, as the other 2/3 were removed during the various surgeries I’ve had over the last few years. In the meantime, I’ll just keep washing my hands as instructed below, and hope for the best:
En route to going to my last appointment in Weston, Florida, my father and I stopped by the Everglades for a hot minute/day. Having lived in Florida for the majority of my life, it was my first time there, and I think it was the same for my dad. We saw our fair share of wildlife and got bitten by our fair share of the 43 varieties of mosquitoes that inhabit the park. Fortunately, we did not get eaten by a Burmese python, as they slither unrestrained (yikes!) throughout the park and have been known to eat alligators, but not as large as the one pictured below:
Because it was Father’s Day when we were in the ‘Glades and we both love loud noises, we went out of the park to take an airboat ride nearby, another first for the both of us. I didn’t think I’d be overly taken with it, but I was too quick to judge. We both enjoyed ourselves, and the windblown looks that came free with the purchase of a ride.
Soon after my SoFlo appt, my sister and her husband revealed that she was carrying a little growing bean in her belly. I’ll be an aunt for the first time with my tiny nephew in late November, so that’s pretty darn exciting!
The end of June called for a trip to Milwaukee and other parts of Wisconsin to visit relatives and get my fill of Bratwursts and cheese curds for a lifetime. My aunt and I went to Summerfest for a day, which is a huuuuuuge music festival on the Lake front in Milwaukee, where we ate strange foods and saw the headliner for that night, Outkast. Apparently, it was a show on their 20th year reunion tour – who knew?! As you can imagine, the show was awesomely energetic, entertaining, and crowded.
The Fourth of July happened, and I celebrated America’s Independence with my family at Lake Martin in Alabama. A couple weeks later, I celebrated my 28th birthday with a polka dotted hat and some friends:
Having no adrenal glands is a rather serious condition, and while it can be medically managed, I am supposed to wear a piece of medical alert jewelry in case of an emergency. I am now steroid dependent and if I happened to be in a bad accident or something of the sort, I could die if I didn’t get enough of the steroids I’m lacking into my body in a timely manner. Instead of always wearing a bracelet or a necklace, I decided to get this sweet ratatattoo on my inner left wrist:
It wasn’t painful, but I don’t foresee myself getting any other tattoos in my lifetime. It just felt like someone was repeatedly dragging a hot thin needle over my skin for a prolonged period of time. It was uncomfortable, but not excruciatingly painful.
As the summer draws to a close, I have not been wearing white past Labor Day. Just kidding, I rarely wear white to begin with, and don’t adhere much to fashion rules, if that one is even still a thing. I will miss the weekend beach trips and swimming in the warm Gulf waters with good friends, seeing good friends home from overseas, brunching outdoors, and all things summer, but I am ready for a change in this 100° heat and a chance to see pretty foliage when I go to North Carolina next month for a friend’s wedding.
Cheers to the end of summer and being able to live a pretty dang normal life sans adrenal glands:
And just remember – when life hands you lemons, or fun socks from South Korea (Thanks Bryan!), squeeze em/wear em, and find time to laugh and embrace your situation:
Also, it’s now 2007 in Ethiopia, and to celebrate, I made a few Ethiopian dishes for my family to enjoy last week:
In closing, I’ll leave y’all with a comparison of how far I’ve come since December of 2011 with Cushing’s, and July 2014 without Cushing’s:
As always, thanks to everyone for your love and support. I hope y’all had a lovely summer, and come on Fall and college football! #gogata
It’s now a thing of my past, so I’ll probably have to change the title of my blog someday in the near future. I no longer have that horrid disease that did a pretty bang up job of controlling my life for over 3 years. I’m almost 2 weeks out from having my adrenal glands removed, and I can honestly say that I feel rather decent. The rate at which I’m healing has been speedy, and I have very few complaints thus far.
I last left off in the pre-surgical prep room with a picture of my CC (Cleveland Clinic) swag, including a fancy gown, hair net, non-skid socks, and a swanky zippered tote for my parents to carry the clothing and shoes I wore to the surgery center. I suited up that morning, and of course had time to take one last selfie, as it would be the last picture of me to ever exist while having Cushing’s. I can’t say it’s an attractive picture, but it’s one I’ll hang onto as being my last memory while lucid and having an over production of cortisol in my life:
I came out on the other end and got this sweet water jug thing as a You-lived-to-tell-the-tale type prize. Or maybe they gave it to me because I was incredibly thirsty out of surgery…either way, they mean business up North, and more CC swag for my pile.
In all seriousness, the removal of my glands took roughly 5 hours. I checked in at 5am, was called back around 6am, got dressed, met the surgeon for the first time in person (he was/is legit), then was taken back to the OR around 7am. I chatted and joked with the people who’d be in the room during surgery for a bit before I took my final breaths and drifted into LaLaLand, where I don’t recall a thing! Everything went smoothly in the operating room, and I got to use this fun little tool when I came to, to help with my breathing:
I was told that I chewed on my breathing tube initially (I was intubated and put under general anesthesia), as I was positioned on my stomach, so I had to be turned over and they put some other crap in my mouth so that I wouldn’t chew on it the whole time and would be able to breathe during surgery. The surgeon went in through my back, in a procedure known as a laparoscopic bilateral adrenalectomy via the posterior retroperitoneal approach. This technique isn’t highly used, but it makes much more sense to reach the adrenals through the back, as that’s where they’re located, atop the kidneys. I have 6 small incisions, 3 on each side, with internal dissolving stitches, covered by glue, steri strips, and bandaids.
I spent a few hours in the recovery room, but then was able to go up to a regular floor, where I only had to spend a day. During that day however, I consumed my fair share of beverages, as the IV drip I was on was not satiating my whistle!
I was put back on a regular diet soon after I came to, but I think there was some confusion as to how hungry I actually was:
Roughly 24 hours after I was brought onto the recovery floor, I was told that I was being discharged! All of my doctors and their teams were in agreement that I was doing well enough to leave at that point, also keeping in mind that hospitals are filthy, dirty breeding grounds for diseases and germs. Because I wasn’t sick sick, they didn’t want me staying in the CC and running the risk of catching something. So naturally, I disrobed from my lovely hospital attire and took a “I’m getting out of here selfie”:
We stayed at a hotel nearby the CC, and I was up and about the next day. We had a celebratory dinner of fantastic Indian food, where I was able to eat 1/3 of my favorite meal:
We also explored Cleveland’s Botanical Gardens, where we saw some beautiful flowers and plants:
We had to stick around the area until Friday afternoon, when I had a follow-up with my surgeon and my endocrinologist, who both gave me the go-ahead to get the heck outta there. They said everything looked wonderful and that I should play the part of a hurting patient who just had surgery, so as to gather sympathy from others, ha ha (I ain’t no tease!)!
All in all, I’m super glad I followed through with the BLA – I have no regrets (yet). My adventures in medical land would not have been possible without the help, love, and support of sooooooo many people all along the way, so THANK YOU all, so much, for sticking by my side. I owe a lot to these two, who’ve been super amazing throughout the whole ordeal, and were great to have in the Cleve:
So my dad flew home early Saturday morning, and my mom and I started our road trip home from the Cleve to Tallahassee, with several stops along the way. One of the first:
The second, in Newell, West Virginia – the Fiestaware Factory/Factory Store (I’m a sucker for colorful dishes, what can I say?!):
Next up, 2 nights in Highlands, North Carolina:
And lastly, a passporty photo of myself (so vain) 1 week post-op.
I’m home and things are going smoothly – I’ve lost all the weight I gained in the hospital (they pumped me full of 10 pounds of goodness), plus a couple other lbs, so I think things are working. I’m on a strict dose of 2 meds, 3x a day, and will meet again with my endocrinologist at the SoFlo CC on June 16th. I wear my medical alert bracelet, carry a SoluCortef (extra strength cortisol) injection with me in hopes that I’ll never need to use it, and have alarms set on my phone for my medicine times. I also enjoy low-cal sports drinks, yummmmmmmm. (My electrolytes are now wonky.)
While I don’t know that I’d say being Adrenal Insufficient is enjoyable, it sure is manageable, which I’ll take over Cushing’s any day.
As always, thanks for your love and support – I’m going to be just fine.
With love and no diseased glands in tow,