Lady Cushing’s Disease

"Dearest Gentle Reader, Did you miss me?"...

(Can you tell what I have been binge watching during my absence?
If only my story included dancing at a high society balls, formal gowns and tea sandwiches…)

It has now been 12 weeks since my surgery to remove the tumor from my pituitary gland that has been causing me to have Cushing’s Disease. It’s hard to believe because in some ways these past weeks have flown by and in other ways they have dragged. While it was a long journey to get diagnosed, find a surgeon, form a plan, and get through surgery - the road to recovery has been equally as long and in some ways much more challenging. I knew it wasn’t going to happen overnight but I never imagined it would be like this. 

Initially when I was post-op, it was just the surgery aftermath that I was feeling but with each passing day the basic things that I lost and was restricted from doing gradually became reinstated. The post-op pain started to dissipate and it felt as though some of my other Cushing’s Disease symptoms improved as well. I celebrated each victory and followed my doctor’s orders to a T. At three weeks post surgery, I was almost feeling like myself. We released my sister Brenda from her post of caretaker/my stand-in and sent her back to her to resume her own life in California. We were all extremely grateful for her help but we thought.. “We’ve got this!” We so did not.

I floated along for a week or so feeling “so-so.” I went to all of my post-op appointments. Everything looked and felt pretty good. The big victory was that my tumor was cancer free which I was extremely relieved to hear and very grateful for. I was gaining my strength back. Time to forge ahead! Then the bottom dropped out on me.

The transition from my tumor releasing too much of the cortisol hormone to having none at all and now being replaced with an oral steroid started to wreak havoc on me. It was a case of “you can’t live with too much cortisol and you can’t live without it”… literally you can’t.. you will die. So I had no option but to take the steroids but supplementing with a chemical form is not a one size fits all prescription. I have found out it is a guessing game at best as to how each individual will react to the dose and a whole new set of problems began cropping up for me. One day I would feel okay and semi-normal then the following 3 days I would be completely down in bed and barely moving. At one point I woke up with a rash out of the blue and had to run to the Urgent Care to see if I was having an allergic reaction to the medication - only to get the run around and some really bad advice that could have been life threatening from the doctor on duty because he wasn’t familiar with my condition. I had headaches, nausea, fatigue, tinnitus, teeth chattering and aches all over. There were no diagnostics to determine how much would be the “right amount.” I was completely frustrated. Then the insomnia started. Cue the temporary insanity. 

I thought the doctor’s telling me that I would feel like I had the flu post surgery for the next few months as my body adjusted to the oral steroids and tried to remember how to produce it on its own was bad… oh no, this was worse. Wayyyyy worse. I would be tired all day and fall asleep exhausted at night only to wake up 2 hours later in the middle of the night… WIDE awake. My mind and heart would be racing. I was riddled with uncontrollable anxiety like I had never experienced before over nothing and anything. Unable to return to sleep for hours or sometimes all night I would just lay there tossing and turning. The accumulation of sleep deprivation started to wear me down mentally and emotionally. I couldn’t think straight. I couldn’t make decisions. I was spending my days begging my body for a good night's rest and watching the clock hoping that bed time (and sleep) would come soon. I was not thriving but barely surviving. 

I messsaged my specialists to tell them what was going on and they were all stumped. They had no explanations as it related to my recovery from Cushing’s Disease as to why I wasn’t sleeping. I was doing all the things they talk about to maintain good sleep hygiene. (Is it me or is “sleep hygiene” the catch phrase of 2024 like “self care” was a few years ago… I now cringe when I hear both). When none of those techniques worked, I was referred back to my primary care doctor to ask for a prescription sleep aid for the first time. I spent two weeks emailing with them, going to Zoom appointments and, running to pharmacies to pick up pills. I tried four different prescription sleep medications and spent multiple nights experimenting with them all. NOTHING WORKED. It got so bad that not only was I not getting a full night’s sleep but I was groggy during the day. One morning I was so out of it I almost took 6 sleeping pills instead of my 6 steroid pills. It was not good and getting unsafe.

When nothing worked from my primary care physician, I begged my way back onto my sleep specialist’s calendar. I had seen him 7 years ago when I felt like I wasn’t getting quality sleep only to find out I did not have sleep apnea and my sleep at the time was actually better than most. I now laugh at that silly girl in 2017. You have no idea what’s coming for you lady… buckle up. With his help, I found a couple of tricks to fall back to sleep in the middle of the night, got a sleep study appointment on the calendar, made a few other adjustments he suggested and found a bit of relief from the middle of the night madness. 

Now 8 weeks later since the insomnia started, my sleep continues to still be poor and I do feel like I have the flu most days. While I have a few tricks in my sleep toolbox from all of my efforts, I am lucky to get 3-4 hours of sleep a night. I am trying to adjust to my new sleep routine which consistently still includes waking up every night between 1:00 and 2:00 a.m., reading for 30 minutes and then usually going back to sleep for an hour before waking up again for the day. My symptoms from the steroids continue but I feel a little less crazy than I did. I still don’t feel like myself though. It’s going to be a long road as I slowly taper off the steroids.

So what does it all mean and what have I learned… well a few things I think.. if I am thinking straight at all at this point.

Acceptance

First, I have had to accept that currently I have a chronic (and somewhat uncommon) illness. I have no control over many things including my own body right now. While I am trying not to surrender to this disease, I have to accept this temporary normal. I am not myself but I am doing what I can to maintain. I am trying to keep hope that this is not forever but just right now.

I have learned that sleep deprivation is maddening. What I have experienced the last few weeks has been one of the most challenging times for my physical and mental health to date. For those of you that have experienced pregnancy and then caring for a newborn, it’s been like being pregnant with all the fatigue and morning sickness but also post natal with a newborn where you get absolutely no sleep - simultaneously. 

I have also had to accept that I am not just “simplyfying” like I promised myself I would in the year 2024 but I am peeling back even farther. “Bare minimum” is good enough and what I can do most days right now. If everyone is fed, bathed, has clean clothes on and it doesn’t look like a bomb went off in the house at the end of each day - that’s the best that I can do. This is not the time to get ahead, take on a bunch of projects or be out making grand gestures. I have to be a little bit selfish because I won’t get to the other side of this otherwise.  

I have had to give myself grace and ask for grace from others when it comes to what I used to be capable of. In an attempt to feel normal, I have occasionally tried to bake or cook like the pre-surgery days. I have always prided myself on being a decent cook and an above average baker but I have got to be honest… I’ve made some truly shitty meals and baked goods during my recovery. Most notably was Chucky’s birthday cake a few weeks ago. It was somehow both dry and soggy at the same time. Some of the things that I have made have been so bad that I was embarrassed to share them with anyone. Many things have gone in the trash because the execution was so poor due to my inability to focus. I hope that someday like the undercooked Thanksgiving pumpkin pie of 2007 that flipped and met its end inside of an oven in a depressing, temporary housing situation - I will be able to laugh about that birthday cake and remember that I was doing my best. It just wasn’t my year.

I have had to say and accept the word “I can’t” a lot.  I can’t travel right now. I can’t meet friends for dinner or host them for a meal. I can’t do this or that with my children. Some days I can’t even answer a text in a timely manner. Most days I just can’t. The only guarantee is that I can try my best to take care of myself right now so that someday soon… I can.

Most of all, I’ve learned to ask for help and let go. My village has answered my call and stepped up time and time again. I thank them all from the bottom of my heart for being there for us, checking on me when I go dark and lifting me up during this time. You know who you are.

So there you have it. I am now five posts into all this nonsense. I hope you are still with me. My wish is that in the future my blog posts will be about something other than Cushing’s Disease because it will be less all consuming. Some day I will look back at this as a short season “when I suffered from a chronic illness and was cured.” That would certainly be something to celebrate.

As always, I’d like to share something I heard recently that has helped me. While binge watching Bridgerton took me to another world during my healing, listening weekly to one of my go-to podcasts grounds me in reality - “MeSsy.” Jaime-Lynn Sigler and Christina Applegate were discussing living with MS and Jaime-Lynn had these words of wisdom for Christina which resonated with me as well.

“MS has almost shined a light on working through hard stuff even though you've always been working thru hard stuff. Maybe this is the thing that will finally make you understand how exceptional you are.”

This illness has definitely shined a light on the hard stuff both past and present. I hope through all this to gain strength in ways I didn’t know I could. I hope to understand that I am (and feel) exceptional when I am on the other side of all this. And maybe like in Bridgerton, I will become the Diamond of my next season. I hope.