Hey everyone!
I apologize for the huge length of time between my last post and today. I am alive, in case you were wondering. Unfortunately, a turn in health and recovery has me make the tough decision to not return to work in Wemindji as scheduled. I am sad about this part in my recovery but I know, especially given past experiences, that I need to remain close to my specialists, a hospital and my bed. Luckily for me, most of my doctors are within a 5 minute drive from my mom's house, as well as the brand new local hospital! I rest and recover much easier knowing I am not far from immediate help should I need it.
So I will explain why I am not back in my classroom this week and instead watching the 9th season of Ru Paul's Drag Race!
If you have a "normal" recovery from pituitary surgery for Cushing's Disease, you will experience a crash in cortisol levels post op (now that the powerhouse tumor is removed and the adrenal glands are shaken from their slumber). The adrenal glands will be sleepy but slowly start to do their job (producing regular amounts of cortisol). You will be given hydrocortisone to make up the difference that your body is lacking while the adrenals catch up. Everyone is different, but some adrenal glands take longer than others to wake up, and that is called Secondary Adrenal Insufficiency. It is a dangerous condition that leaves you susceptible to adrenal crisis, or shock, if even a minor illness like a stomach bug, goes untreated. Basically, now I don't make enough cortisol to live! Such a difference from before, where I made TOO MUCH cortisol to live. Damned if you do, damned if you don't!! Luckily for me, my adrenals are only in a coma, not dead, which also sometimes happens. Since they are only coming out of hibernation, this setback is temporary however not to be rushed. I have had to put aside all my goals and plans and am taking things day by day. If I rush recovery and head back into my normal life, I risk illness that can only be helped by urgent care.
Besides risking adrenal crisis, I have a whole slew of new symptoms that affect every day life. I am exhausted, have trouble sleeping, weak, dizzy and light headed, have restless legs at night, my muscles feel constantly tight, arthritic-like pain in my joints, and all-over body pain. ITS GREAT! This too is temporary and I just have to be patient and kind and listen to my body and respect my limits. Sometimes (a lot of times) this means saying "no" to people and plans, but I know that what I do one day, I'll pay for with days in bed later. Sometimes it's worth it, and other times its not. Another thing I have been battling with is the ongoing sinus infection that I have had for 4+ MONTHS!! Its amazing to see how surgeons performed this surgery through my nose and sinuses but because of this "less intrusive" method of reaching the brain, I am left with major life-long sinus issues. Still a better alternative to having my head and cutting my skull in half!!
So while my adrenals take their sweet ass time waking up, I am also slowly being weaned off my hydrocortisone medication. They are a heavy steroid my body is eating up while I am deficient, and like all good things, it must come to an end. So monthly I go down a few milligrams at a time and for weeks I feel as if I am going through withdrawal (which I technically am, of cortisol). Just when I start to feel "normal", its time to decrease my dose again! Bittersweet. The upside of getting off the HC is that I'll slowly start to lose some of the 150 pounds I gained while I had the tumor! So far I have lost 37 with no help and I am feeling good about that.
Unfortunately, my estrogen was the first thing my tumor chucked out the pituitary window and now I permanently produce none at all. Basically I went through menopause a few years ago when I stopped having a period. This doesn't necessarily mean I am barren, but it does make things slightly more difficult. For my bone's sake, I will be taking birth control (to provide a source of estrogen) until I am 50.
I am grateful to have a hobby to keep my mind and fingers busy. Embroidery has been a creative outlet when my body won't behave and I am grateful to have endless inspiration! Check out my Instagram account @shehadmeinstitches !
Anyways, one thing I am really grateful for is the communities of "Cushies" I have found on the internet. These people from far and wide have such a tight-knit supportive community that I am proud to be a part of! I have learned more from these survivors than I have learned from any research paper, doctor or video. My doctors have all been informative and helpful in answering my questions, but very often I don't even know what to ask, and when I do, I don't know what to do with the information I receive. I am glad that these many people from around the globe are able to help me make sense of test results, of how my body now works and ways to help myself heal. Incredibly enough, I have even managed to make friends with about a dozen Cushies in southern Ontario!! Amazing given that only 1 in a million are diagnosed. I started an Ontario Cushings Disease/Syndrome facebook support group and I am amazed at what a small world it really is! Some I share my surgeon with, another my endocrinologist! Amazing! I hope to get together with them soon and create some long-lasting friendships!
Anyways, I'll continue to update when something remarkable happens, otherwise know that I am still around and still kicking (weakly!) In the meantime, I implore you to check out a blog of a fellow Cushie I am proud to call my friend!! Catarina is coming up on a year post-op and is an inspiration!! https://snugbeauty.com/crushcushings/
Take care my friends!
