Journal entry by Lisa Spears —
I am now almost two months post-op.
I am going to try and keep this as succinct as possible.
The good news is that it looks like I've survived. I am the 30-50 percent.
The bad news is that my physical suffering is simply immeasurable and indescribable.
As my hypothalamus, pituitary, and adrenals all learn to work again, I am beginning to slowly titrate the many replacement hormones I've been on for the last few years.
I went off of fludrocortisone (synthetic aldosterone, which helps your kidneys retain salt, and therefore hold and distribute water to your organs) fairly successfully.
Going off hydrocortisone is more tricky. I have been going down 5mg at a time. Every time I do, I'm launched into several days of every bone, every joint, every muscle, every tendon, aching like crazy. It's like having 25 radio stations turned up all the way, all screaming at me, constantly. I take countless types of pain medication and most barely scratch the surface, but at least they do turn down the volume a little.
I've gone through withdrawal from some very powerful substances, and... yeah. This withdrawal blows them all out of the water.
After these few days, I then feel better, better than I have in years.
Then it's time to go down another 5mg.
Today, after 2 days at 15mg in the morning and 5mg in the afternoon, I broke down and updosed (took an extra 5 plus a fludrocortisone). Plus I chugged a red bull.
I've got a packed day of zoom tomorrow, and it's been on the books for a while. I know people would understand if I cancelled, but frankly, I don't want to. So more hydrocortisone withdrawal is going to have to wait.
Everyone has their breaking point, and sometimes I just can't take feeling so fatigued that I have to lie down and "take breaks" in the shower, then find I literally cannot get back up, and being in so much pain that I can't think about anything else.
The full recovery time from the surgery is two years, and I realize I am making myself more miserable by expecting people who haven't been through it to get it. But I also realize I'm gonna have these days.
Allodynia is extreme sensitivity to pain. It means things that normally don't hurt do. It's a neurological issue, where the brain doesn't interpret pain signals correctly. For me, it comes in the form of extreme sensitivity to sensory input. I have to spend most of the day lying in a dark room with minimal light or sound.
I also can't stop crying. I'm not sure if that's the hormones, the adrenal insufficiency, the dehydration due to low aldosterone, the traumatic brain injury, or just a normal response to the constant suffering.
I was warned that uncontrolled crying was a symptom of brain injury... but they also said I'd have uncontrolled laughter... I look forward to that one!
In any case, I know I'm exactly where I'm supposed to be, that this too shall pass. I know relief is in the post. I know that the "so much better" feeling I have after each phase of withdrawal means that eventually I'll feel better.
And I remember the Latin phrase from Ovid:
"Prefer et obdura, dolor hic tibi proderit olim." --
"Be patient and tough; someday, this pain will be useful to you."
USEFUL RESOURCE ON THE SURGERY RECOVERY:https://csrf.net/coping-with-cushings/what-do-you-wish-you-knew-about-recovery/
I am going to try and keep this as succinct as possible.
The good news is that it looks like I've survived. I am the 30-50 percent.
The bad news is that my physical suffering is simply immeasurable and indescribable.
As my hypothalamus, pituitary, and adrenals all learn to work again, I am beginning to slowly titrate the many replacement hormones I've been on for the last few years.
I went off of fludrocortisone (synthetic aldosterone, which helps your kidneys retain salt, and therefore hold and distribute water to your organs) fairly successfully.
Going off hydrocortisone is more tricky. I have been going down 5mg at a time. Every time I do, I'm launched into several days of every bone, every joint, every muscle, every tendon, aching like crazy. It's like having 25 radio stations turned up all the way, all screaming at me, constantly. I take countless types of pain medication and most barely scratch the surface, but at least they do turn down the volume a little.
I've gone through withdrawal from some very powerful substances, and... yeah. This withdrawal blows them all out of the water.
After these few days, I then feel better, better than I have in years.
Then it's time to go down another 5mg.
Today, after 2 days at 15mg in the morning and 5mg in the afternoon, I broke down and updosed (took an extra 5 plus a fludrocortisone). Plus I chugged a red bull.
I've got a packed day of zoom tomorrow, and it's been on the books for a while. I know people would understand if I cancelled, but frankly, I don't want to. So more hydrocortisone withdrawal is going to have to wait.
Everyone has their breaking point, and sometimes I just can't take feeling so fatigued that I have to lie down and "take breaks" in the shower, then find I literally cannot get back up, and being in so much pain that I can't think about anything else.
The full recovery time from the surgery is two years, and I realize I am making myself more miserable by expecting people who haven't been through it to get it. But I also realize I'm gonna have these days.
Allodynia is extreme sensitivity to pain. It means things that normally don't hurt do. It's a neurological issue, where the brain doesn't interpret pain signals correctly. For me, it comes in the form of extreme sensitivity to sensory input. I have to spend most of the day lying in a dark room with minimal light or sound.
I also can't stop crying. I'm not sure if that's the hormones, the adrenal insufficiency, the dehydration due to low aldosterone, the traumatic brain injury, or just a normal response to the constant suffering.
I was warned that uncontrolled crying was a symptom of brain injury... but they also said I'd have uncontrolled laughter... I look forward to that one!
In any case, I know I'm exactly where I'm supposed to be, that this too shall pass. I know relief is in the post. I know that the "so much better" feeling I have after each phase of withdrawal means that eventually I'll feel better.
And I remember the Latin phrase from Ovid:
"Prefer et obdura, dolor hic tibi proderit olim." --
"Be patient and tough; someday, this pain will be useful to you."
USEFUL RESOURCE ON THE SURGERY RECOVERY:https://csrf.net/coping-with-cushings/what-do-you-wish-you-knew-about-recovery/
Patients and caregivers love hearing from you; add a comment to show your support.
Help Lisa Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Lisa's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
