My name is Teri Hudson and I am 4 years post-op Pituitary surgery and in recovery from Cushing’s disease. (this is an update to my original story, which can be read here)
My quality of life has definitely improved after my surgery compared to life before surgery. Life before I was diagnosed with having Cushing’s Disease included living with diabetes, high blood pressure, vision loss, obesity, potassium loss, seizures, strokes, depression, anxiety, memory loss, confusion, loss of hair, skin irritation, was falling often and had several broken bones.
Life after surgery was just the beginning of the healing process and the long road of living life after Cushing’s.
It took over a year after my surgery for my pituitary gland to begin to function on its own. I was finally able to wean off daily hydrocortisone (HC), but my pituitary was only producing just enough cortisol for my body to function. I required stress doses of HC to help fight off illness, for procedures, or if I was under extreme daily stress. My endocrinologist advised me how important it was for me to always wear a medical bracelet because I was cortisol dependent.
In my first year of recovery my hair, skin and overall appearance improved. I lost about 60 pounds and the Cushing’s puffiness, moon face and buffalo hump went away. Slowly my energy returned and the joint pain eased up. I no longer had diabetes, potassium loss, high blood pressure or considered obese.
I went to rehab to help build back up the muscles that were damaged during Cushing’s and also from the strokes I suffered before I was diagnosed. I truly believe that the rehab played a big part in my overall recovery process along with the heathy lifestyle I was trying to live. I felt like I was getting my life back again.
My second year in recovery things still seem to be improving slowly but in my third year things began to unravel a bit.
I began having issues with adrenal insufficiency (AI) which brought on seizures, low blood pressure, low body temperature, and potassium loss. Several of these episodes required hospitalization. So now, with this diagnosis of AI, I had to carry an emergency stress dose kit with me.
During my third and fourth year of recovery I also experienced several kidney stones, two that required surgery to remove, and I also developed a recurring cyst on my ovaries resulting in one of them needing to be surgically removed.
During this time, I also had to be very cautious in the COVID pandemic trying to stay healthy, stress free, and socially distanced. So grateful that, to date, I have avoided getting infected with the virus.
Living with the lasting effects of Cushing’s disease does have its daily challenges. I still have memory loss, confusion, some side effects from the strokes, and the adrenal insufficiency issues to manage.
I realize that I have limits and can’t push myself like I use to. I make lots of mistakes and I have to try harder at things; but I make progress and now I realize that’s what is important. I also have realized that I can no longer do what I once could and I may never gain that ability back.
I think on an overall basis I manage well and have adjusted to living with Cushing’s. I try to live as normal a life as possible and most days try and disguise my disabilities. Not all days are good; there are days that the depression and anxiety are very bad, some days the joint pain is severe and some days that just require lots of rest. But I will say that there are more good days than bad since the tumor was removed.
I am fortunate to have a wonderful group of physicians that know and understand my condition and I have a great line of communication with them. My endocrinologist is very supportive, understanding and has been a real-life saver for me.
I have routine visits with her to closely monitor my lab work, cortisol levels, bone density levels and MRI’s for any signs of reoccurrence.
My supportive circle of family and friends are wonderful and have been here every step of the way with me. They give me the encouragement that I need to help get through the difficult days. I could not fight this battle without them, especially my husband.
Cushing’s has taken so much from me and I should be bitter. But I have chosen to look at it different and be grateful that I have been on this crazy journey. It has made my faith stronger, made me a stronger person and I have met some amazing people along the way. I enjoy the simpler things in life and don’t take the small things for granted anymore. Who would have thought on some days you would be so proud of yourself for just taking a shower and going to the store by yourself?
I am not sure what the next stages with life after Cushing’s will be but I will just take one day at a time and run the race.
I have three granddaughters that I get to see daily and they bring so much joy to me. So glad that I fought through the terrible days of living with undiagnosed Cushing’s and get to enjoy them now.