Well hello again!

Thanks for reading my 1st post “ Two Days Before My Birthday I Was Diagnosed with Cushing’s Disease…” and joining me on the road to recovery from endoscopic cranial surgery and Cushing’s Disease! I’ll be updating this periodically to keep you all up to date on the progress so make sure to signup for those email notifications! I promise I won’t bug you because I hate notifications myself 😂.

Before we get into the recovery, let’s talk about my past and current symptoms so you can know how exciting this is going to be!

Once the doctor diagnosed me with Cushing’s, and I learned that it takes 1-10 years to discover it, I started to think back on when my symptoms actually started to appear. It’s possible that they started in college because there was a time in 2015 I experienced some of the symptoms such as weight gain and hormonal acne, but I started birth control in 2016 so that could have regulated my hormones. I got off birth control in August 2018 and since it takes some time for the body to adjust from being off of it, I am sure that the symptoms started in November 2019 when I was experiencing stress/hormonal acne but thought it was due to something else at the time.

When I moved to Arizona in July of 2019 I was 145 lbs (my happy weight) and it gradually increased. I started noticing the weight gain in January 2020 and stayed a consistent 155 lbs throughout the year. 2021 and around July of this year I was 165 lbs, no matter how much I was working out and eating healthy, I continued to gain weight. After July, it was like things just flared up, I am currently 180 lbs. This is by far the most frustrating part about Cushing’s because I am a workout addict/retired D1 collegiate athlete and not seeing results after doing all the right things was very concerning. The weight gain, hormonal acne, irregular periods, and feeling fatigued even though I was getting 7 hours of sleep every night were the main symptoms that made me go to the doctor in February. Throughout the year these symptoms became more prominent and in July I started to add more to the list.

I have the moon face which made my face feel like it was swollen but now since the tumor is removed it doesn’t feel like that anymore! Pink/purple stretch marks that I started noticing last year around November on my hip but they were really small and I didn’t think anything of them. They started spreading more around September/October of this year. My periods are also irregular, the last time I had a “period” was in July. There was hair on my face, my nails are brittle, my skin is dry, my wounds take longer than usual to heal, I bruise easily and I was also diagnosed with anxiety a while back. I would drink a gallon of water a day but my body would retain it. Every time I ate certain things I would bloat badly and it caused constipation. I would also forget things easily and sometimes feel like I was in a daze. Along with my cortisol levels being elevated before the tumor, I also had high levels of cholesterol and prolactin. It’s amazing how that little tumor on my pituitary gland caused so many issues!

November 2022

Now that you are aware of my symptoms, it’s time to get into recovery mode! So far I have been restricted from a few things. I can’t blow my nose for 3 months and if I need to sneeze I have to do it with my mouth open (Ewww). I can’t bend at the waist, I’m not allowed to lift anything 10 lbs or more, and I have to refrain from anything that is going to cause me to strain. Also, a fluid restriction where I can only have 1.5 liters of fluids to make sure my sodium levels don’t drop.

The first couple of days after surgery weren’t that bad. On day 4 I had a headache that was an 11 out of 10 and it lasted for three days! Tylenol was barely helping. I have nasal congestion but the sinus rinses are helping with that. On November 22nd I had two post-surgery appointments where I got the okay to do light cardio (walking, biking, or jogging) along with starting to lower the dosages of my hydrocortisone ( A steroid that produces cortisol) and end the fluid restriction! Even though my cortisol levels decreased, my body isn’t producing cortisol as of right now so I have to take hydrocortisone for a while until my body starts to produce it on its own and slowly decrease the dosage to get off of it. Which I plan to do by the end of the year.

December

Helloooo December!!

Since I got the okay to lower my dosage, on December 1st I started with another decrease of hydrocortisone. Instead of 30 mg at 8 AM and 20 mg at 2 PM, I dropped the morning dosage to 25 mg. Just to let you know about the plan I am on, I will decrease my dosage every 3 - 5 days. When I left the hospital my dosage was 40 mg at 8 AM and 20 mg at 2 PM. If I stay on this plan I should be off the hydrocortisone by the end of the month.

So far I have noticed small changes in my body such as my nails are growing back healthier, I'm starting to get acne (again), and I sweat more during my workouts!

December 6th marks 3 weeks post-surgery and guest what…. Mother Nature gave me a visit! I might be the happiest woman right now about this visit 😂. That explains why I have an annoying pimple on my face. Welp, December 7th I’ll be dropping my dosage again. Instead of 20 mg in the AM and 20 mg in the evening, I’ll be dropping to 15 mg in the evening.

Well, December 20th marks 5 weeks post-surgery. Still can’t believe it’s only been that long! I’m now at 20mg a day of hydrocortisone so that means it’s testing time! I’m currently seeing two endocrinologists, my original doctor at Arizona Endocrinology and another at Barrow Neurological Institute. They both have me doing a different set of tests, my endocrinologist ordered a 24-hour urine test, salvia test, and blood work. The endocrinologist at Barrow ordered an ACTH stimulation test which is when I will be injected with a synthetic hormone (cosyntropin) to see if my adrenal glands are producing cortisol on their own. I had to fast and not take the hydrocortisone for the test, it is about an hour in a half, and they periodically pulled blood for labs. As of right now I do not know the results but should have them within a week! Hopefully, my adrenal glands are doing their job so I can stop taking hydrocortisone.

December 28th was a frustrating day and I’m going to be honest with you all. I thought I was supposed to be tapering down my dosage to be able to stop taking the hydrocortisone….well, I was wrong. I decided to stop taking my medicine before I got my results from the infusion test (BIG mistake). When I went to my appointment that day I informed my doctor that everything was going well but I did have a headache and my breast were hurting. It was probably because I stopped taking my medicine and he agreed. He informed me that my adrenal glands are not doing their job and that my cortisol levels are too low which means I will have to continue taking hydrocortisone. Not sure how long I will have to take it but it’s going to be for a while. Not only do I have to continue to take the medicine but I have to be closely watched because it is a possibility the tumor can come back. Now, this isn’t the first time hearing this but this is the first time it aggravated me.

Lately, my body has been hurting and I haven’t had the energy to work out or even finish a painting I’ve been working on. That night I cried because I was just frustrated with knowing that this is my life now. I have a disease where I have to be monitored closely, take medicine every day, and if I get sick or get an infection I have to double up the dosages. Never would I have thought this was going to be my life at 28. This really sucks when you think about but I know I’m going to be fine.

The next day I got a massage at BL Spa and the masseuse said my body felt like it was rejecting her. It helped ease the pain a little but I’m going to have to go once a month for sure. As my body continues to go through these changes and hormones go up and down, I have to remind myself to be patient which is the hardest thing for me. Along with being patient, I have to listen to my body and make sure I’m not overdoing things.

Even though it has caused some sucky moments and a lot of medical bills to come my way, I'm not allowing this disease to take over my life. 2022 was draining due to Cushing’s but I still accomplished a lot with my art. 2023 is definitely about to be some serious spiritually, mentally, emotionally, and physically.

January

It’s 2023🎉 and it feels like it’s going to be an amazing year! It seems like 2022 was a rough year for a lot of people but after going through a storm⛈️ the sun is always going to shine brighter☀️.

I started January off by returning to both of my jobs from LOA and going to an endocrinologist appointment on the 3rd. It was an okay appointment, my lab results came back and my doctor recommended that I go visit a primary doctor because my liver enzymes are elevated. 😩UGHHHHHH. Other than that, everything else was good! When I was told I needed to go to a primary doctor I got a little anxious because I don’t want to go to the old one since he didn’t listen to me last year. To be honest, I am a little traumatized from my previous experiences with doctors and I don’t want that negativity in my life right now but I got to do what I got to do.

I did my research on my Aetna app and found a new primary doctor. The appointment is on February 7th so I’ll let you all know how it goes. Hopefully, my liver enzymes are back to normal by the time I go to the appointment 🤞🏾.

My life is full of doctor's appointments at this point. On the 11th, I went to go see my ENT to check on how my nose is healing from surgery and after, I visited my chiropractor Dr. Brian at Elevate Sports Medicine & Chiropractic. If you’re looking for a chiropractor in Phoenix, AZ I highly recommend Dr. Brian. Instead of just adjusting and sending you off, he listens to you first to figure out what is the best treatment for you. Next, he adjusts you and even gives you some at-home activities to do.

Now that I’m done with doctor appointments for the rest of this month, I finally had the opportunity to attend a Cushing’s Disease support group! It was great, got to talk with my doctor outside of an appointment and found out that Barrow Brain & Spine is having a Pituitary Patient Education Day at the end of February. Can’t wait to attend it to learn more about this disease and hear others’ stories.

Recovery has had its ups and downs but I know it’s a process and I have to be patient or as I would say “Let the Paint Dry”. Last year around this time I created the painting on the right and had no idea it would basically be what I was going through for the year. This is the reason why it is one of my favorite pieces of artwork that I have created. If you don’t know the meaning of this paitning, check out my portfolio!

I’ve been having a little more energy lately. Hiking almost every other day, walking on the treadmill for about 30 min and recently I started Apple Fitness which I love! Got to close those rings! Skin and nails are continuing to improve, my hair is thicker than ever and I randomly stuck my hand out in front of me the other day and noticed that I wasn’t shaking!!! I almost cried because I was so happy. Oh, and I forgot to mention...I lost 7 pounds!! If you already saw it on Instagram story..act like you didn’t 😂. Everything is slowly but surely coming altogether. Crazy how many symptoms Cushing’s caused but I'm so happy they are going away. One of the reasons I created the shirt below 😄. My goal is to bring awareness about Cushing’s along with encouraging others to pay more attention to their bodies and advocating for themselves. Last year around this time I started my journey of trying to figure out what was going on with my body and I thank God I’m not in the same place as I was before!

Cushing’s Awareness T-Shirt

Well, let’s see what February brings!

February

Nothing happened in February. Well, I did go to another primary doctor but I’m back on the search for another one. I liked their vibes but I need a little more due to my health condition. I also got some lab work done for my endocrinologist appointment on March 1st.

March

March is already off to a great start and I can’t wait to tell you all about it 😬!! I had my endocrinologist appointment at Arizona Endocrinology Center and my lab work results came back normal! As I mentioned in January, my cortisol levels were at a 3 which is too low and my liver enzymes were elevated which was due to taking Tylenol the night before my labs. This time my lab results showed my liver enzymes were back to normal and my cortisol was at 6.7! The normal range for cortisol is a 6 so this means I could decrease my dosage of hydrocortisone. Now since this is a possibility, I have to do a stimulation test.

Friday, March 17th at 8:30 AM, I went to Arizona Endocrinologist Center for the stimulation test which took about 2 hours. They do theirs a little differently than Barrow Brain & Spine. At Barrow, they put an IV in my arm to pull blood and inject the synthetic hormone. At AEC, they first stuck me in my arm to pull blood for the first lab results. Next, they gave me a shot of the synthetic hormone in my shoulder which stung/hurt like hell. After 30 minutes of receiving the shot, they stuck me in my arm again to pull blood and again 30 minutes after that. If you’re wondering which test I like better... it’s the one from Barrow. My right arm was KILLING me that whole day but I have to accept the fact that this is my new normal. Well, now I just have to wait until I get my lab results back to see what is next.

On March 21st I got some amazing news!!

I'm super excited to be decreasing my medicine! Being on this journey definitely has its ups and downs but there have been a lot of positives throughout it such as weight loss, my cortisol being at the normal level, and feeling like my old self again but a little better 😉. Even though I was already aware of my body but this is making me even more aware. Noticing the changes and how my body feels some days make me listen to it more than ever. It really makes me appreciate it more. It will forever amaze me that a brain tumor can cause all this chaos.

This month I was able to fully work out and not be in pain. After my workouts, I would feel sore which is a good feeling because last year around this time when I started digging deeper into what was going on with my health I noticed no matter how much weight I would lift, I wouldn’t ever be sore. Weird, right? It’s really important to know your body because if you don’t, you’ll never really know when things are off or not normal for you. With that being said… for April, which is Cushing’s Disease Awareness Month, I’ll be doing a series called “Cushing It” on TikTok/IG. My goal is to make others aware of this rare disease and answer any questions anyone may have about it

April

March was great but April was even better but also a little challenging close to the end of the month. And don’t worry, of course, I’m going to tell you why lol

April is Cushing’s Disease Awareness Month and it was great educating everyone with my “Cushing It!” series. Posting my videos not only educated people but also brought some friends who also have Cushing’s! Meeting these individuals made me happy and I am so thankful for them!

Now it was a little challenging because It was my first time getting sick and boyyy did it take me out! I had to call out of work twice which is not me because I usually push through since I work remotely. I had to even reschedule my doctor's appointment that was scheduled for May 1st because I wasn’t able to do the lab work I needed to do for my appointment. Well, guess I’ll see my Endocrinologist at Arizona Endocrinology Center in June 🤷🏾‍♀️.

Since this was my first time getting sick, I was a little nervous though. My doctor told me if I did get sick I would have to increase my dosage which I did not do because I’m hardheaded and don’t want to depend on the medicine. Even though I didn’t increase I think my body did just fine with recovering.

It definitely was a bummer I didn’t get to see my Endocrinologist at AEC but I got to see my Endocrinologist at Barrow at the end of the month. That appointment went great and since he’s not my main one, I’ll see him again in November. Well, let’s get to May!

May

May began with appointments! When I think about it, I have an appointment every month lol. Welp, that is my new normal so no complaints over here! I had an appointment at Camelback Women’s Health on May 8th for my yearly check-up and it was the best one I have ever had! Now if you remember from my first blog, the person that I was seeing when I first started going to CWH left the practice so this means I have to see someone new. Of course, when I see someone new I have to tell them I have Cushing’s and that I’m on hydrocortisone but they were so understanding and asked a lot of questions about how I got diagnosed. When I got my lab results back, everything came back normal! Starting May off on a good note.

My next two appointments were both on May 10th. One with my ENT, Dr. Griffin Santarelli which was my last one 🥺. Well, I’ll get to see him every 6 months now instead of every other month, and then the other one was with my neurosurgeon, Dr. Andrew Little. Anywaysss let’s get into the appointments! The appointment with Dr. Griffin Santarelli, was one of my favorites because he let me video the camera up my nose so you all can see how amazing my nose looks! Then the one with Dr. Andrew Little was just an update on how I’m recovering and when I will see him next which will be around the anniversary of my surgery.

Well, May started great and it ended even better because I am now 157lbs! Weight is literally just falling off me and I am happier than ever! Now 157 isn’t the goal, I still have some more to lose but I am so close! I will most definitely be hitting that goal in either June or July and I can’t wait to get to it!

Now let’s get to June!!

June

June I decided to decrease my medicine again! By the beginning of June I decreased to 10 mg a day and in the middle of June I tried to go to 5 mg but every time I would do it, I would get a headache and feel irritated. Since I was on 5 mg for a couple of weeks, when I met with my endocrinologist on June 27th, she decided since trying to get off the 5 mg was causing me to feel bad then I could go down to 2.5 MG. She also mentioned it was time to take another stimulation test. Well, let’s get to July!!

July

My stimulation test was scheduled for July 10th and it was more painful than the last one back in March. When the nurse injected the synthetic hormone in my arm, boyyyyy, I screamed. I’m pretty sure the whole doctors office heard me. And yes, I can be dramatic sometimes but the way that shot stung, it was no joke! Reason why I rather do the stimulation through an IV.

Now, when a stimulation test is performed, I’m not supposed to take my medicine the day before and in the morning of the test. Well, after the test, I decided to skip it that day…and decided to do it the next day without the doctor providing my results…and before you know it, it was a week without taking my medicine and I didn’t feel bad. On the 9th day, my doctor gave me the results that my cortisol looked good and I could go down to the 2.5 mg.

Well, I decided to not go down to 2.5 mg and continue to not take my medicine. It has now been 3 weeks without the medicine and I feel amazing!! Can’t thank no body but God!! I said this before I am going to continue to say it, it feels good to be getting back to “my normal”!! At the end of July I got on the scale and I was 150lbs!! 5 more pounds and I’ll be back to the weight before all of this started to happen! I’ll most definitely be 145 by my birthday in September. Oh wait 😂, I totally skipped August like the stores are already getting ready for Halloween! I’ll definitely be 145 in August, I’m claiming it!!

July was great now let’s see what August has in store..

August

I didn’t have any appointments this month, but my only update is that I hit my weight goal! 145 pounds!! Now the goal is to tone up. I have been struggling with staying consistent with weight training but I will get back to it soon.

Now lets get to September!

September

Wow!! This September sure looks different from the last! As you may know from my first blog, September is when I was diagnosed with Cushing’s. I get a little emotional looking back at pictures and remembering where I was mentally and physically last September. I am so thankful I kept pushing to get the answers I needed because I wouldn’t be where I am today! Advocating and spreading awareness about Cushing’s!

This month, I had to get bloodwork before my appointment with my endocrinologist on September 25th. I did my labs on September 12th because I didn’t have time any other day to do it before my appointment, but I wish I didn’t get it before my birthday. The results were available the next day, which was quicker than usual. My results showed my cortisol was slightly high. The range is 7.2 - 63.3, I was at 65.6. I know it was just a little high, but that makes me very anxious. I couldn’t stop thinking about it and couldn’t wait to meet with my doctor later that month.

As the days passed and it got closer to my birthday, I eventually let it go and reminded myself that I can only control what I can control. I wasn’t going to allow it to ruin my birthday! Finally, when I met with my doctor, she mentioned the cortisol was slightly high, but she wasn’t worried. She also mentioned I was supposed to do more labs than just the cortisol, now I have to do more bloodwork. Well, let’s get to October and I will give you all an update once I have the test results!

October

Nothing happened this month, but as it got closer and closer to November, I got emotional because it was the anniversary of my brain surgery. November is going to be a very eventful month with a lot of doctor appointments and getting my MRI to make sure there are no signs of the tumor growing back. I’m excited to see what the next month brings, and since it is now the end of October, I hope it brings the blood results that I keep calling about that I took at the end of September lol. Waiting for results is one of the worst waiting games.

November

November!! Oh, how I am ready for you! As mentioned, I was still waiting for the results from the bloodwork I did at the end of September…well, everything came back normal! The month is already off to a great start! I had two doctor appointments, an MRI, my first ever 10K, and I needed to pack. I told you all it was going to be an eventful month! Let’s talk about the 10K first.

As I mentioned, this was my first ever 10k. I had my mind set that I was running 1 mile, walking the rest, and then going to work right after, but that didn’t go as planned. Y’all…why did I run the whole thing?! Since the group I was in started late (the start time was 7:30 AM, but we started at 8:11 AM), I wasn’t going to be on time for work at 10:00 AM. Then I decided I was going to run until I got close enough to a spot that wasn’t too far from my job so I could walk straight there, but when I looked down at my watch and noticed what time it was when I hit 2 miles, I decided to keep running. I had faith that I was going to make it andddd I also wanted the medal for completing the race. Once I hit 3 miles, I started questioning myself LOL, but when I finished the race, I was very proud of myself. For someone who has never competed in a 10K or trained for one, I didn’t do too bad (results below), and I made it to work at 9:45 AM! Now, since that is over, let’s get to the next day…

On November 13th, I had my MRI and boyyyy was I emotional. I didn’t think I would get that way, but while I was sitting in the waiting room with the gown on and IV in my arm, I started to tear up because I am so grateful God gave me the strength to advocate for myself the way I did. Same day last year, I was getting mentally prepared for brain surgery and had no clue what was going to be next. I have learned so much on this journey and have more to learn. Now enough with the sappiness, we are back to the waiting game for the results, but let’s get to the next appointment with my ENT…

On November 15th, I had an appointment with my ENT. It has been a long time since I visited but the visit was great. He stated everything looked good when he put the camera up my nose and that I wouldn’t need to see him anymore unless there was an emergency. Not only was my ENT appointment on that date, but it was also my Brainaversary! Last year, I was 190 pounds with a whole lot of symptoms, and today, I am 137 pounds with zero symptoms! S/O to God!! And guess what…

Five days later, I was informed that there were no signs of my tumor growing back!!

But, I still have to be aware of my body, and if I start to notice any symptoms, to let them know ASAP. When I visited my endo at Barrow Brain and Spine that same day, I discovered that there are different types of tumors and the one I had is a slow-growing tumor. There is a possibility of it growing back, but I’m putting that in God’s hands.

Well, as I end this blog, I would like to say thank you! Thank you to everyone who has supported me, watched my videos, and read my blog!! My recovery mode blog ends here, but I still have some work to do. My goal is to get back in the gym consistently again. I will continue to educate others about Cushing’s, and I encourage you all to always advocate for yourself because, at the end of the day, the only person that going to care the most about you is YOU!!

And don’t forget to let the paint dry! <3

Recovery Mode!