It's been awhile...
The past year and a half has been very difficult and challenging, but also rewarding and encouraging in some ways.
Let's recap, shall we.
In June of 2021, I was diagnosed with Cushing's Syndrome. This is a condition that's caused by the overproduction of Cortisol, the "stress hormone". Cortisol is naturally distributed in the body during stressful situations or when the body is fighting something internally...it's what they call "fight or flight". If the body has extra Cortisol being distributed, it can begin to damage many other organ functions within the body...all over.
I had a tumor on my Adrenal gland that was noticed about 8 years ago. I went to a specialist that didn't seemed worried. I unfortunately trusted him. 😡 Fast forward to 2021...I started researching my health problems and different diagnoses over the recent years and made a connection that pointed to Cushing's. I switched doctor's and after a bunch of tests, Cushing's was confirmed. I KNEW there was something underlying that was being missed. 🤔
After looking back on my life and connecting the dots of all my health issues over the years, I have come to the conclusion that I have probably had Cushing's for over 20 years. TWENTY YEARS! 😳My body has been stuck in "fight or flight" causing all kinds of chaos and havoc within my body for 20 years. At least. 🥺
So...next step. Adrenalectomy. Take out the source that is throwing a party of Cortisol. "YOU GET CORTISOL! YOU GET CORTISOL!" (credit: Oprah) 👊 Every organ hit the payload of Cortisol. 💰🙄
The body has two adrenal glands, so my body will be fine with one. However...the other one has been sleeping on the job bc the "naughty" one is running the show. After surgery, it will be forced to wake up IF it still works.
Unfortunately my body has been swimming in Cortisol for a REALLY long time, so...it DID NOT take kindly to getting it stripped away.
Here's where I start my timeline for the last year and a half...roughly. Get ready for the bumpy ride... 🎢
Sept 29, 2021: Adrenalectomy. Removal of the adrenal gland. Post surgery recovery: A lot of pain. A lot. 😫
Less than a week later: Brett tests positive for Covid. He tries to fight it at home, but gets worse every day. Mike and Colby do everything possible to help him. (This period of time has created PTSD for Colby from seeing his twin in this condition). I was out of commission due to the surgery and Syd was quarantined for exposure from someone else. After several days, he was admitted into the hospital for 5 days.
Mid October: I test positive for Covid and get a 5 night stay in the hospital. Yippee. While still recovering from my surgery. Lots of pain. Lots of STUPID I.V. nightmares. 😤😡🤬
Fun fact💡: I got admitted into the SAME room that Brett stayed in. He came home and a couple days later I went in. AND...it was my FIRST ambulance ride. ☺️ Mark the calendar ✔️
During the next few months: Ready for this. *deep breath* Several ER visits, my 2nd ambulance ride ✔️✔️, blood sugar drop to the 40's and again to the 60's on a different occasion, a couple more hospital stays, uncontrollable body spasms, tested positive for Mono, tested positive for Lupus and Fibromyalgia, a pinched nerve that was excruciating during every body spasm (MULTIPLE times a day), nervous breakdowns with uncontrollable crying, chronic diarrhea for several months, vomiting all the time, constant nausea....
I'm sure there's more, but... that's all I can remember. There were many very DARK days. Mike wasn't sure I'd pull through. That's how bad I was.
I had seen just about every specialist to figure out what was going on. I kept in constant contact with my Endocrinologist (Cushing's doctor) to keep him in the loop in case it was Cortisol withdrawal related. Yes, that is truly a thing. 💯 I read that post surgery recovery is comparable to herion withdrawal. I'm not kidding. I've never taken herion, but my recovery was...no joke. He was certain though that I was on track with my hormone replacement dose.
I finally went to the Neurologist to talk about the spasms. Those spasms were #1 💯 the WORST part of the recovery. I dreaded waking up bc the mornings were the worst. All she said was that they were stress related. Really. 🤨
💡 Light. Bulb. 💡
What did I JUST have ripped out of my body?! Uhhh...the STRESS hormone lollapalooza tsunami. That's right. Cortisol. THE stress whisperer. Apparently my body is not coping with stress well. At all.
I messaged my Endocrinologist and he was amazed bc spasms have never been a symptom after this kind of surgery. Yep. Leave it to me to be the exception. 🙄😏 Anyway...he said to increase my dose from 40 to 60 or 80. So, of course I chose 80. Duh. LOAD ME UP.
And wouldn't you know...a few days later I felt like a new person! It took HOW many months to figure this out?? I stayed on 80 for a bit, then tried 60, then back to 40. I found my sweet spot at 60. I am STILL on 60 bc of some of my OTHER diagnoses that are causing my body to require legit more Cortisol.
Fast forward a bit.
April-ish 2022: I'm feeling great! The best I have in YEARS! I start working out and seeing a Physical Therapist for some pool exercise. This was helping me tremendously. I develop a good, trusting and open relationship with my PT. He helps me work out some tight muscles that are causing pain...which hurt like a Mother 🤬, but it was necessary. One day he decided to channel his inner Chiropractor (he is NOT licenced to do that) and adjust my middle back (it WAS very tight). He pushed down on my spine and it was THE most excruciating pain I have EVER felt. 🤬🤬🤬🤬🤬 Worse than ANY surgery recovery. 💯💯
It took at least three weeks to get back into a position where I could move again without wincing. He caused Costochondritis, fancy word for: inflammation of the cartilage in between ALL my ribs. ALL my ribs. In addition to a Fibromyalgia flare up.
So...that put me out of commission and off my workout schedule, and I have struggled since to get the energy I had before that happened.
The next few months were pretty good. I was getting back the motivation to do things and complete projects.
Let me just say that again. COMPLETE projects. THAT is huge for me. *queue pat on the back* 👏
October-ish 2022: Massive headaches, chronic knee pain and inflammed chronic foot pain...resulting in an MRI of my head and one of my foot.
Foot: Sinus Tarsi Syndrome aka chronic inflammation of the point where my ankle and another bone meet on the top outside part of my foot. Constant burning pain and inability to move my foot in certain directions without pain. Also....Plantar Fasciitis, arthritis and a cyst...all on my right foot. I had to get custom orthotics to correct my step. It still causes a lot of pain but it's slowly getting better.
Knees: Very bad arthritis and the left knee is bone on bone at one point. I got a gel injection series in my left knee that is supposed to be better than a cortisone shot. Well....it wasn't. 😡 $450 later, my knee hurts WORSE!! P.I.S.S.E.D. That's what I was. Pissed. So...I found a new doctor (I was thinking about it before this) and got a cortisone shot in each knee (MUCH better! 👌) and was told I need new knees. But...I have to lose more weight before I do that. Until then, my knees are tolerable with cortisone shots.
Head: Migraines. Caused by anxiety and stress. MRI: shows hardening of some arteries due to high cholesterol and diabetes. Nothing much to really worry about, just keep those numbers in control to keep it from progressing. My migraines only last for 15-30 minutes at a time and only occur for a short period of time and then they're gone for awhile. It's weird.
December 2022: I had my blood retested to confirm that the Lupus and Fibromyalgia diagnosis wasn't due to my body being so jacked up. I honestly didn't think I had it, so I stopped taking the Lupus medication in November for about 6 weeks. I noticed though, after about a week of not taking it, my body hurt ALL over and I was really tired. But I still held out till my appointment. I got the results back and the number that confirms the diagnosis doubled from what it was originally in January. So...I definitely have it. 😔 Back on the meds and I'm feeling much better in the aching body sense. OH...but I was told that I'm borderline kidney dysfunction though. So...there's that. 🤷♀️
January 2023: Blood in my urine. Yep. We're talking brown pee. It happened once one day and then again, several times, 2 days later. No UTI. So, now I'm going to see my Urologist. The same one who did the Adrenalectomy and has also been monitoring a cyst on my kidney. 🤦♀️ He might have to do a Cystoscopy to look into my bladder. NOT looking forward to that. He'll have to stick a scope up in there and fill it with saline to get a good look at everything. All I can say is...once that scope gets removed...he better be wearing a rain poncho bc that saline will be tsunami-ing all over him. 🌊 You're welcome for the visual. 😉😉
Also this month: I had a check up with my Endocrinologist. The goal after my Adrenalectomy was to eventually wean off the 60mg of Hydrocortisone, aka Cortisol replacement that I'm taking, to a dose that is natural for my body in order to force my other inactive adrenal gland to start functioning properly. But...my Lupus in uncontrolled right now which means my body is full of inflammation. Everywhere. Because of this, my body needs the extra Cortisol, so weaning off right now sends me into a downward spiral. I DO NOT want that. The spasms start again and the anxiety skyrockets.
He did, however, put me on a new diabetic medication called Mounlago, which is known to produce great weight loss results. 🤞🤞
To sum it all up: I am still working on recovery from all the damage Cushing's did to my body. ALL the damage. Everywhere. Lots of damage. 😟😣
I don't deal with stress well and my anxiety is a big issue right now. I have to remind myself to take it easy and not overcrowd my plate. I get physically ill when I'm overwhelmed and I just can't do that right now. I have to allow my body to heal and work on rebuilding what's been damaged. I have to focus on getting my Lupus under control, so my body doesn't have to fight so much inflammation.
I feel like I'm on the other/positive side of things finally and I'm on the right track. I take it day by day and roll with the punches. I try to stay positive and be patient with myself and take care of me. ❤️❤️
