Preparing myself to what happens after surgery...

I've been trying to research and talk to others online that have Cushing's Disease, and have already gone through surgery. I'm so glad and thankful to have a diagnosis and finally have a consultation date with a surgeon. It's crazy when I look back at all the years I've had all these different health problems. When I think of it all sometimes it gets overwhelming to think about "if only" this could have been discovered years ago. Many of my symptoms and complications from this disease have been with me for over 20 years.. That is crazy to think about, I have to stop myself from all the "what ifs" or "if only they could have found this earlier" But I can't help but wonder. I've been "sick" for over half my life.. I started blood pressure meds at the age of 16. It use to go so high in high school that I would pass out in class. Then I had to quit college due to severe health problems. It greatly affected my working ability over the years. All the health problems just kept going, and going, getting worse and worse. Until finally my body has reached its limits.. I'm glad I saw some things about Cushing's online and noticed that "Hey I have all of those symptoms" .. One of those lightbulb moments. So then I talked to my doctor and told him I wanted him to test me for Cushing's. Of  course, He said, "No worry, Tina, everything is going to be okay. Cushing's is really rare." Then all the testing began. Testing started in Sept. 2013 and continued until Nov.2013. When he confirmed "my" diagnosis of Cushing's. He told me, I didn't want to believe that you actually had Cushing's so I performed several of the test over and over, hoping they were not right, because Cushing's is not good. But I'm sorry to say you definitely have Cushing's. Not a happy thing to hear, but when you have suffered for so long with so many unexplainable health problems. When you've heard more times than you care to think, "Well if you just got out more", "If you just ate better", "If you just would exercise more", "Maybe it is all just your nerves", "I think she may be a hypochondriac", "Maybe she just doesn't want to work", "She can't really be that sick","It is all in your head" (Hey, by the way anyone who thought or told me this... Guess what?? yep it is all in my head.. There is a tumor there.. So see I'm not crazy!! I'm really sick, so I couldn't just get over it!!) Over the years it hurt, when people doubted all the sickness, and pain that I have experience. For all the doctors who threw different meds at me, never actually finding out WHY I have all these health problems.. For years I have caught every illness I'm around.. Now I know why.. The tumor, Cushing's Disease, lowers your immune system a lot. It can all get overwhelming.. Then I've been researching what to expect after surgery. Then I learn it is not one of those get surgery, and feel great.. Then I get concerned that others will once again doubt me, thinking well she should already be better. It would be great to have the surgery and feel great.. Of course no matter what I read, that is what I pray will happen. I also pray that no matter what I may go through after surgery, that others will remember what is posted below. And everyone will be patient with me through the difficulties that may occur after surgery. Some of the ladies I've talked to on support groups that have already had the surgery, some of their stories are not happy ones. They all remind me to remember how long it took my body & mind to get as bad as it now, and to be patient after surgery. To remember all this did not happen to my body/mind over night, and it will not all be better over night either..

What can I expect after surgery..

It can take some time to feel back to normal, to lose weight, to regain strength, and to recover from depression or loss of memory. It is important to remember that the high cortisol levels physically change the body and brain, and that these changes may reverse quite slowly. This is a normal feature of the recovery period and patience is definitely a virtue here.
After a successful pituitary surgery, cortisol levels are very low. This can continue for 3–18 months after surgery. These low levels of cortisol can cause nausea, vomiting, diarrhea, aches and pains, and a flu-like feeling. These feelings are common after surgery as the body adjusts to the lower cortisol levels. Doctors give people a cortisol-like medicine until recovery of the pituitary and adrenal glands is either well under way or complete.
Hydrocortisone or prednisone is usually used for this purpose. Doctors monitor the recovery of the pituitary and adrenal glands by measuring morning cortisol values, or by testing the ability of the adrenal glands to secrete cortisol in response to an injected medication similar to ACTH.
Until the pituitary and adrenal glands recover, the body does not respond normally to stress – such as illness – by increasing cortisol production. As a result people who suffer with ‘flu’, fever or nausea may have to double the oral dose of the glucocorticoid when they are sick. However, this increased dosage should only be used for 1–3 days. On occasion, people can suffer vomiting or severe diarrhea that prevents them from absorbing the glucocorticoids taken by mouth.
In this situation, it may be necessary to receive injections of dexamethasone or another glucocorticoid, and seek emergency medical care. If it is necessary to have a prolonged increase in hydrocortisone, a doctor should evaluate this need, and a ‘tapering’ regimen may be needed to reduce the dose back to the daily requirement. 

Post-operative relative adrenal insufficiency is often accompanied by lightheadedness, dizziness, nausea, vomiting, abdominal pain, fatigue and weight loss. Given that patients with Cushing's disease are accustomed to very high levels of cortisol, even a relative reduction in cortisol levels can result in symptoms of adrenal withdrawal. It is important to emphasize to the patient cured of Cushing's disease the importance of daily glucocorticoid replacement and the potential clinical consequences of untreated adrenal insufficiency. Acute adrenal crisis is a life-threatening condition that occurs when there is not enough cortisol, a hormone produced by the adrenal glands. Patients should be advised to wear a medical alert bracelet. In addition, they should be advised to double their steroid dose during illness, to receive parenteral glucocorticoids if unable to use orally, and to inform all health care providers that they are taking steroids. It often takes 6 months to 2 years for patients to recover from affects of their Cushing's and be able to discontinue glucocorticoid replacement therapy. In some cases, central adrenal insufficiency may be a permanent complication from surgery and lifelong replacement may be needed. The clinical features of Cushing's begin to improve as soon as the replacement dose is below the level of preoperative cortisol production.
After surgery, frequently contacts with the patient are advisable to optimize downward titration of glucocorticoid replacement. Patients are evaluated 4-6 weeks post-operatively for a more thorough assessment of pituitary function. It is important to determine whether they have developed deficiency in adrenal, thyroid, sex steroid, or growth hormone production. Monitoring for diabetes insipidus and the Syndrome of Inappropriate Anti-Diuretic Hormone secretion is also necessary. Patients usually return several times the first 6 months and at least every 6 months thereafter in order to monitor for recurrent hypercortisolemia.
Tapering prednisone over the ensuing months can be one of the most challenging aspects in the management of Cushing's disease. This is related to the fact that there is no lab test which can determine whether the replacement dose is correct. Each reduction in the amount of prednisone may result in increases in fatigue and lethargy. It is important for patients to anticipate that they will most likely experience an extended period of time (from several weeks to several months) during which they may feel less well before starting to feel better.
Patients need to be counseled that the typical recovery period is approximately one-two years, and that a healthy diet and exercise program are important. Those patients on medical therapy for hypertension or diabetes mellitus should be monitored carefully, as dose reductions may be needed whenever steroid doses are tapered. The recovery from Cushing's can be remarkable, with many patients returning to their pre-Cushing's physical and psychological health within 1-2 years.  (information gathered from various Cushing's Support & Research websites and groups)