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,
Well, they’re officially off of my kidneys and out of my life. My adrenal glands, that is. Before heading up to Oh-Oh-Oh-Ohio, some of my lovely friends back home threw a going away dinner for me, wherein they got me an awesome cake:
It read, “Time for you to push that Cush – we love you Laura!” Thoughtful and appropriate, and I only then learned that “Kush” is a weed reference (I live under a rock). However, the Cush they were referring to was an abbreviation for Cushing’s, the stupid disease I’ve been dealing with for the last many years.
My Gland Finale send off was a ton of fun, and my friends are the best and most thoughtful (thanks ladies and gents!). We ate a magnificent dinner and finished it off with the aforementioned/photoed Cush cake (carrot for the win!), and I was showered with balloons, flowers, sweet cards, and a few other delicacies. It was definitely a morale booster as I headed up to Cleveland to have surgery.
My parents and I headed up to Ohio from Florida a couple days before surgery, and moseyed our way on up there, passing by Cleveland, Tennessee en route. I think the Ohio version rocks harder, or at least they have a Rock & Roll Hall of Fame there…The Cleve, as I came to call it, didn’t seem all that bad, and it wasn’t the “Mistake on the Lake” I’ve heard it referred to as – it was full of charm and culture and a really huge hospital, the place I’d learn to call home for a few days!
The clinic campus in Ohio is phenomenally large, spanning for several blocks, plus other locations in the area. I just so happened to have my surgery at the main campus in the Cleve, which seemed to be a convenient location in the city, with my parents at a hotel only a couple blocks away.
My day of pre-op on Monday, May 5th, went really well – I started at 8am with a CT scan of my abdomen/adrenals, then proceeded on from there to just about every other appointment one would every need to have leading up to surgery.
Everyone we met with was super friendly and nice, accommodating and knowledgeable, and made me feel as though I had made the right choice in choosing the Cleveland Clinic for my Bilateral Adrenalectomy (BLA). The Ohio branch is ranked #2 in the country as far as adult endocrine affairs are concerned. Can’t beat that!
I was able to end the day with one last hurrah while having my glands – as it just so happened to be Cinco de Mayo. A margarita (OK so I had 2) and queso were the perfect ways to end my disease-filled life – and you best believe I enjoyed every bite and sip!
I had to cut off food and drink at midnight, in preparation for the surgery that was about to ensue, but that wasn’t a problem, as I was asleep by 9:30pm for my 4:00am wake up call...Bilateral Adrenalectomy or Bust!
April 8th was a day to celebrate Cushing’s awareness, a disease/condition/syndrome so aptly named after the man who “discovered” it, Dr. Harvey Cushing. I toasted him around 1pm on that day, with a refreshing glass of cherry lime sangria at a lovely place in DC, while there on vacation. I should have done something to promote Cushing’s awareness on that day, but in my mind, better late than never. Also, I feel as if I need closure to my situation, and the end is finally in sight.
Before my trip to DC, I met with a new endocrinologist at the Cleveland Clinic in Weston, FL, and it was determined that I would need to have my adrenal glands removed (shocking information, I know!). The majority of the doctor’s time is spent at the Cleveland Clinic in Ohio, where they have something like 26 endocrinologist and 6 endocrine surgeons, so he recommended me to their top surgeon way up there. I was originally scheduled for surgery on April 22nd, but that date got changed to May 6th, which is less than a week away at this point!
After meeting the new doctor, I of course had to do lab work for him, in the form of a 24-hour urine collection, dexamethasone suppression test, and a few random blood draws – which always makes for an enjoyable couple of days. They do know me by name at the lab where I have my work done, but I don’t know if that’s necessarily a good thing.
And then, I agreed to participate in a 6 week saliva study for the Cleveland Clinic in diagnosing people with Cyclical Cushing’s, as they think that’s what I’ve been blessed with. So every day for 6 weeks, I had to collect my saliva 2x/day, by placing a small cotton-ish log roll (it kind of looked like a small tampon, but without the string) under my tongue for 5 minutes at designated times. My cortisol was being tested, and saliva is a very accurate measure for said hormone to be tested. I was unable to drink alcohol, coffee, or juice 4 hours before the collection time, with no food or drink an hour before, then I had to rinse my mouth out with water 10 minutes before the collection. I then had to freeze the samples, and send them off to Cleveland in 1 week batches. I bet you’re jealous after reading about that, as it was really fun. But it will hopefully benefit others down the road, somehow, somewhere…
So now I’m in the preparation/anxiety stage of my upcoming surgery. For starters, I’ve never been to Cleveland, but I’m excited to visit a new place. It’s still a bit cool up there temperature wise, so I’ll have to forego my sundresses and sandals for sweaters and boots. Or pajamas, slippers (or those socks with the grippy things on the soles) and hospital gowns, as I doubt I’ll be outside seeing the sites all that much. On the other hand, I don’t know that I feel all that prepared for surgery, but I do have 7 pre-op appointments next Monday, the day before my surgery. That will be the first time I meet the surgeon and his team, as well as the last day that I drink a margarita and eat a lot of queso while having adrenal glands, as it will be Cinco de Mayo! Hospital stays aren’t the greatest, but I feel like an old pro at this point! This is what I looked like following my 2nd brain surgery in December 2011 – my, how far I’ve come!
It’s hard to believe that it’s been so long since I’ve been battling this horrid disease that is Cushing’s, but I feel hopeful about this next/last step in the treatment process. I will in turn be adrenal insufficient for the rest of my life, but it’s a manageable condition, and I’ll apparently learn all about it when my endo comes to see me in the hospital the day after my surgery. I will have to take a few medications daily in order to stay alive, and wear a medical alert bracelet or other piece of jewelry, in case I’m ever in an accident or pass out on the street and need to be revived or treated. The swanky bracelet is a precursor to the sweet ratatattoo I’m going to get – inside wrist, haven’t yet determined which arm.
I have much more to write, but don’t want to have an overly long blog post – so hang tight and I’ll post more about the Gland Finale before my surgery!
I started 2014 thinking that it would be “The Year Of No Complaints” for me. So far, it’s pretty much panned out that way, but my only real complaint stems from this elephant in the room / on my stomach that is Cushing’s Disease. It just won’t seem to leave my life in a timely fashion.
To give you an update, the last time I wrote, I had just returned from a successful trip to Shands, wherein I was referred to Emory to see a “specialized specialist.” Turns out that Emory’s person of that description is not what they say she is on paper/their website, and it took her 5 weeks to determine that my case was “too complicated” for her. The office manager for Emory’s Neuroendocrine Pituitary Center told me that they “really wanted to help me,” but perhaps I should check out the Pituitary Network Association’s website to find a legit doctor. So that was disappointing, and it was also in December, so then I basically had to start over in finding a new specialist.
Over the last few years, I’ve had bizarre luck with endocrinologists and the technology that is the internet. In my mind, a doctor’s office should ensure that the patient receives care, and should never tell him/her to use the internet as a means of finding their own treatment. My first treating endo told me to google my surgery options, now Emory (Emory!) tells me to use the internet. It’s fine that they didn’t feel comfortable in handling my case, but you’d think they’d know of someone who could…am I that much of a medical anomaly?
With a little help from my newly reassigned case manager (thank some higher power for her!), I was able to get in as a new patient at the Cleveland Clinic of Florida, to see a great endocrinologist. He’s the head of the department at the Cleveland Clinic of Ohio, but travels to Weston, FL 1 day/month to see patients. I was on the books for January 20th, but got a call a few days before saying that the doctor was sick and wouldn’t be able to make it. And since I’m a new patient and need a longer appointment time, I couldn’t be rescheduled until March 17th. Just a little bit of a setback…
But then I got a call saying that the doctor will be spending an extra day to see patients during his monthly trip in February, so I’m scheduled for Tuesday, Feb. 18th. Cross your fingers that this appointment will actually happen, as the new doctor is “delighted” to take on my case! That’s reassuring and gladly welcomed after many months of doctors seemingly not giving a shit…it’s not a good feeling.
I’ve learned to be extremely patient in having this disease, as things rarely go as planned. When told in late October that I needed my adrenals out sooner rather than later, I went into panic mode. In theory, I should have already had my 5th surgery, but I haven’t even been in for a consultation yet. It’s only my life on the line here, no big deal. To make light of the situation, one of my good friends sent me this lovely little stuffed kidney with a homemade party hat on top. The party hat signifies an adrenal gland, as I often refer to the adrenals as “kidney party hats”:
So besides having Cushing’s, which I hopefully won’t have for too much longer, my year is off to a great start. I was able to spend the holidays with my wonderful friends and family from in and out of town, so that was truly special and a nice way to transition to 2014.
I came up with some 2k14 goals, and they are as follows (in no particular order):
Spend more time with loved ones:
Get up in time to watch the sunrise (on occasion):
Step up my crafting game:
Eat delicious/nutritious/meaningful meals:
Spend more time in the great outdoors:
Maintain my sense of humor:
Beat Cushing’s Disease:
As always, I thank everyone for their continued love and support. This will be my year to shine – oh yeah – I’ve already made it big time, as a feature on totalbeauty.com. Thanks to a talented writer I know from back in the day, my message about Cushing’s is making it’s way in the world:
Kicking Cushing’s To The Curb,
You may or may not have noticed, but I haven’t been active on the blogosphere for nearly a year. It’s been an eventful year, to say the least, but the best part is yet to come. I continue to battle with Cushing’s Disease, and in fact, my symptoms have worsened during my inactive time.
On April 16, 2013, I had another brain surgery, bringing my total to 4 at this point. This one was a bit different from the previous 3, as it was “bloodless brain surgery” and was performed by an amazing man named Dr. Foote. The technical term of said surgery is “stereotactic radiosurgery” and in a nutshell it’s an incredibly high dose of radiation, delivered in just one dose. I was given the highest dose that is suitable for the human brain, and it did nothing to help my situation.
So what the heck is that thing? It’s called a halo and it’s made of titanium. The placement of the halo was by far the worst part of the procedure, as they literally screwed it into my skull in 4 places and I was awake the whole time. I was given 1 valium, but with my size it didn’t do a thing to help me. I was given 4 incredibly painful shots of a local anesthetic, then a team of doctor men (it took 4) worked quickly to secure the thing onto my head. The pain didn’t last long, but the whole headpiece was just a bit cumbersome. After it was in place, I went back to the staging area/waiting room and got to eat breakfast. It was rather entertaining, as I couldn’t exactly get food into my mouth without hitting that lovely titanium ring around the middle of my head. No biggie. The staff took pictures of all of us who were having the procedure done that day, and printed them out for our scrapbooks. It was odd, to say the least…
The actual surgical procedure didn’t take too too long, and I equated it to having a giant Xray. I laid on a bed and my head was secured to the table and the rest of my body was strapped down. The radiation machine (Linear Accelorator) rotated around me 5 times or so and delivered a ridiculously high dose of radiation to my pituitary. I only heard noises of the machine and didn’t feel a thing. Painless and bloodless. #winningcombo
So fast forward to many months later and I recently returned from a 2 day trip to Shands in Gainesville. I was able to knock out 4 follow-up appointments with my team down there, and everyone had the same thoughts: I looked worse in October than I did in April :( I started the trip off with a 2 hour wait to get my MRI. Needless to say, waiting is really fun:
I finally got called back for my MRI, and it was uneventful, as usual. However, I did elect to listen to Gainesville’s premier pop station, so I got to listen to Miley Cyrus, Lady Gaga et al as my brain was being imaged. The picture below is the MRI tunnel thing that has become a major part of my life over the last few years. This thing and I get along real well:
To make a long story short, my doctors all agreed that my Cushing’s is a fierce little monster and they’ve done all that they can do in treating it at Shands. I have had 4 brain surgeries and I’ve tried a medication, but have not showed any improvement. My neurosurgeons believe that the residual tumor cells have jumped into my cavernous sinus, which is home to cranial nerves 3,4,5 and 6, as well as the carotid artery, and that is “a dicey place to be mucking around.” Dr. Foote was “significantly bothered by the trend in the wrong direction” and cursed my tiny tumor cells and their stupid genetic code. The appointment with him was very thorough, and he’s one of the best doctors a patient could ever have. And he’s not so bad to look at:
He reviewed my morning MRI with us in the room, and it was really interesting to see inside my brain like that! You could even see my double chin on a few of the cuts: (cute, I know)
Endocrinology and neurosurgery were my Tuesday appointments, and they agreed with Dr. Foote’s observations and recommendations. So, I have been referred to Emory in Atlanta to their Neuroendocrine Pituitary Center and will go forth and prosper in Georgia. I have to have my adrenal glands removed in a procedure that is called a Bilateral Adrenalectomy (BLA). We’ve exhausted all resources through 4 brain surgeries and medication that I didn’t respond to. The BLA will actually cure me of Cushing’s, as I will totally stop producing cortisol. In turn, I will trade it for something called Addison’s Disease, which is not the most ideal disease, but it’s manageable through medications. I don’t know too too much about it at this point, but I will have it for the rest of my life, so I’m sure I’ll know everything in the coming days/months/years/lifetime. I’m nervous as all get out about having this major, life-changing operation, but at the same time, it will allow me to get my life back (and to not look like a bloated manatee anymore, yay!) and move on, something that I have been looking forward to for years at this point.
So that’s where I stand right now and am waiting to hear back from Emory regarding an appointment time. The sooner the better is what my referring endocrinologist said, as I’m not going to get any healthier in the coming weeks or months. My goal is to knock this surgery out before Thanksgiving and use the holidays as a time to rest and recover. Send some positive energy my way and I’ll get through this Gland Finale with no complications :)
I am extremely lucky and grateful to have such a wonderful group of friends/family/doctors on my team and by my side every step of the way. As always, thanks for your continued love and support and I’ll keep y’all updated more regularly than I have in the past, as I’ll have a lot of downtime after my BLA.
Kicking Cushing’s to the Curb (will need to change that soon!),