I was writing this last night to post today and this morning, I got a call with my MRI results.
I have a 4mm tumour in my brain. The people who I’ve told who are close to me say they’re sorry, but I say not to be. This is exactly what we wanted to find. It’s the perfect size for removal and recovery. If we hadn’t found anything – I would’ve been incredibly worried. This explains EVERYTHING I wrote about down below.
I will have to say, I’m incredibly surprised with the amount of support so many have been showing me when it comes to me being open about Cushing’s Disease. Thank you, thank you, thank you. I know it isn’t easy for people to grasp – mostly the people I see on a daily basis who hear more about it than those of you here, online. Myself, along with the others I speak to who have this disease, can talk to our loved ones and doctors about how we feel, but no one will truly understand.
I’ve spoken in a past post about the symptoms and since then, they’ve worsened quite a bit. It’s made me feel even more overwhelmed, stressed, anxious (as if I wasn’t enough of an anxious person before this), exhausted, weak, unable to properly think and more. Most nights I don’t sleep much. The rare nights I do get sleep, I wake up even more exhausted.
Lately, most days I can barely type on my computer without shoulder/arm pain and muscle weakness. Same goes with my legs – sitting hurts my legs. Walking is painful. My muscles are weak. I feel the weakness in my legs when I’m laying down. My feet throb like none other when I’m standing on them – laying down or sitting down they throb even more. My hands shake for no reason. Trying to get out of bed alone is a struggle. Some days, I can barely sit up to get out of bed. Squatting down to grab stuff or sitting on the ground, I have to hold onto something or else it’s nearly impossible to get up.The headaches I get are horrible as well as getting lightheaded. I can’t think straight. I forget what I’m talking about mid-sentence. My short-term memory is a lot more rough than my long-term. I get overwhelmed by big crowds of people when there is too much going on. Another issue is that I get breathless going up a small flight of stairs, for absolutely no reason. I have no strength. It’s hard to be inactive. Another issue is that I don’t heal quickly with Cushing’s. Cut myself? It won’t heal as fast as it should and it’ll leave a darker scar than usual. I hurt myself at the gym 3 months ago and it took 2 months to heal my back. I just got over a cold. It’s been about 2 and a half weeks but I’m still a little stuffed and have a cough. I’m usually over colds in about a week or less. Not anymore I’m not.
All I want to do is go back to walking, lifting weights and yoga. I know that won’t be a reality for a while. About 4-6 months after surgery is when I’ll be able to start slowly going on walks and doing yoga. Weights will be a little longer. I had to completely stop going to the gym about 2 months ago when I realized my body really couldn’t take it. I went from squatting 125 lbs to 95lb to barely 45lbs.
Not going to lie, I have a hard time being positive most days, but I find something to be positive about. A lot about how to go on while dealing with a chronic illness is finding the good in your days. One thing I try to be positive about is that I somehow find the strength to do every day tasks that someone can do fine even when tired before or after work, that I now find extremely difficult since I wake up and am already running on fumes within 10 minuets of waking up. I know I shouldn’t push my body past its limits, but some days I really have to in order to get things done. It’s not healthy for my current state… I’m still finding ways to keep everything together without making myself even more ill.
All I’m certain about is that if I wasn’t able to handle this mountain of crap, I wouldn’t have been dealt with this card. It sure as hell is not easy to go through but it’s changed me as a person. Extra vulnerability time: I’m not confident like I used to be, not that I was incredibly confident before. I worry about my appearance every single hour of every single day and I worry about my anxiety even more than I did before. But it’s also taught me to be more open to other people’s struggles. To appreciate those around me more. It’s made me think even more about the people I have in my life and the things I’m blessed to have. Despite my current health condition, I have an amazing life. I’m very lucky. I think a reason I was dealt this card was to learn patience and appreciation. I’m a very impatient person and again, I want this to go away asap so I can start recovery but I have to be calm and patient and take this one day at a time. It’s super hard when I feel alone because I don’t see people every day that have to deal what I deal with.
There is a wonderful woman who just celebrated her 1 year post-op and she lives about an hour and a bit away from me. I ‘met’ her through instagram and she is such an amazing support. Her name is Danielle. Her and I text a bit and she’s always there for me whenever I need to chat. She just made a group chat with a few other women dealing with Cushing’s and we all got to start talking today. I am so grateful she did that because now there is a whole group of women supporting each other. Even though we cannot be in each other’s physical presence, the online is still amazing. Having people to talk to who understand the reality of the struggle helps in fighting this.
Again, thank you for reading and thank you for all the support. It’s scary, but I’m glad I have answers. I’m ready to face the long recovery, head-on.