@colleenyoung Colleen, I am so very grateful that you wrote and did appreciate reading @windwalker's post. I've had a rough time of it over the last two months. Two hospitalizations both including ICU stays and a lengthy time inpatient. I was just discharged from the last a week ago and have nursing and physical therapy home care. I'm tired. I am still fighting, always will, but this ongoing chronic/acute illness is wearing me down. Hospitalized for sepsis and adrenal shock. The adrenal insufficiency is getting harder to manage despite the excellent guidance from the Mayo Clinic. There is now a question of an autoimmune deficiency that may be stirring things up, so more evaluation and treatment are needed. I wonder if it's time to return to Mayo for re-evaluation. I miss my old life, I miss my work (clinical psychologist), I miss an easier life with more fun times. My husband is enormously supportive and just a great person but I worry about the impact on him. He's been told so many times that it is "touch and go" when I'm admitted to the ICU that I know he is worried and protective of me. I think I am also sad. I had a close call with the adrenal insufficiency just yesterday but was able to recover with increased medication. Still ill but not as bad as yesterday. Sick of being sick and worrying about the quality of my life. It takes so long to recover from each episode. I guess the short story is that I am very grateful you posted. It could not have come at a more needed and appropriate time. It raised my spirits and helped me to post back as I'm always worrying that my posts are so much about being ill and in the ICU all the time that they are depressing to others. Anyway, thank you. I hope that we can and others on this site can continue to correspond. I also hope I can be of help to others despite my ongoing problems. Best wishes to you and to all on this site. Rhoda

@rckj Good morning Rhoda. I just read your response to Colleen. I don't know much about adrenal issues. I think the adrenals are what gives you energy. I do know that not having the energy to live the life you want; stinks! I mentor another group on here (mac and bronchiectasis); lack of energy is one of biggest gripes. The fatigue that comes with our disease is daunting. I am curious about your condition. How do they treat adrenal problems? You mentioned that it might be time to visit the Mayo again. If you think it, then it is probably time to pay them a visit. One thing about Mayo is, they are always advancing. It might be good to check in and see if they have anything new going on. Your husband sounds like a real gem. I hope that your today is brighter. Hugs -Terri

How are you doing today, @rckj Rhoda?

@colleenyoung thank you for reaching out to me. It meant a great deal to me. I would have responded much sooner but had another two hospitalizations, same critical issues. My husband and I are returning to Mayo Clinic in Rochester in the end of August to try to find a way to eliminate or minimize these episodes. Possible there may be an auto immune issue that is kicking off the adrenal crisis. I am hopeful but nervous. Hoping for a better quality of life and elimination of life threatening episodes. Thank you for being there for me and hoping we can stay in touch. Best wishes, Rhoda.

@windwalker hi Terri. Thank you for your post. I didn’t get back sooner due to two more hospitalizations, all in ICU. Your support means a great deal to me. I am returning to Mayo Clinic in Rochester in the end of August for further evaluation. The hope is to eliminate or minimize the episodes and increase my quality of life. Short version of my disorder is that my adrenal glands don’t produce cortisol any more. Just like a diabetic can’t live without insulin I can’t live without substitute cortisol called hydrocortisone. I take it three times a day, orally and have injectible for emergencies. Any form of stress, particularly infection causes more need for hydrocortisone than I can give myself and I have an adrenal crisis which is life threatening and needs quick hospital treatment. I’ve had a lot of these and the doctors are trying to stabilize me. It’s a life long condition but there is hope for better management of daily symptoms and the crises. It’s a rare disorder but Mayo has people who specialize in it and I am grateful for that. Even though I live in a major east coast city, I couldn’t get appropriate treatment here. Adrenal crises are dangerous and scary for me and frightening for my wonderful husband. You have to get the right emergency meds fast. We wish we could travel but right now the risk is too high. Our local hospital knows what to do but you can’t count on other facilities. I’m hoping Mayo can improve my situation. They did last time but there’s a way to go both with emergencies and debilitating daily symptoms. I hope that gave you some information on the problem. Glad to be going back to Mayo, glad for this site and grateful for your communication. I hope all is as well as can be expected with you. You have all my best wishes. I hope to stay in touch. Rhoda.

I was in ICU for five weeks in a coma, after that 3 more weeks in the hospital brain/spinal cord injury ward. ( 8 weeks total). After about 600 days, I made a partial recovery. I have compassion for you. What do the Mayo doctors say is causing your insomnia? Dr Ron Rubenzer

@rckj Thank you for the update Rhoda. I am glad you are out of the hospital now; it sounds like it was quite an ordeal. I cannot imagine having to manage that kind of a disorder, I really feel for you. I am so glad that you are being seen at the Mayo next month. They are the go-to place for the out of the ordinary maladies. As for me, I am doing alright. No energy now mostly due to the heat and humidity. Been in hibernation mode due the fact that I cannot breathe when I step outside. Ok, now back to you...I would be very interested to hear what Mayo docs have to say after you've seen them. What about now? Do you have energy to do things?

@rckj Hello Rhoda:

I can imagine how frustrating it is to live with this type of exhaustion. I am sure that you are looking forward to your appointment at Mayo and getting some answers to your problem. I too, look forward to hearing from you after your appointment at Mayo.

As I'm not very familiar with adrenal disorders, I'm just wondering how this adrenal condition was diagnosed? Is there a specific blood test that shows the cortisol level in your blood or did a scan show some problem with the adrenal glands?

Teresa

@hopeful33250 Teresa, thanks for your message. I will try to keep everyone updated re: Mayo’s solutions. The adrenal insufficiency is often misdiagnosed fo years, as it was for me. There are gradually increasing symptoms. Severe fatigue, nausea, vomiting, diarrhea, joint and muscle pain, electrolyte imbalance,low blood pressure, salt cravings, anemia, collapse, delirium, etc. It increases to being unable to function and adrenal crisis with high mortality if not treated. It is often blown off by doctors due to the vagueness of the symptoms. There are multiple tests for it, especially a stim test to see if under the injection of a precursor of cortisol whether your body can produce cortisol.The test can make you pretty sick however. Even endocrinologists misdiagnosed me and diagnosed wild things including psych implications. I am a clinical doctoral level practicing psychologist so I knew they were wrong but still devastating. It is a rare disorder and doctors are concentrated more on the epidemic of type two diabetes not this. There are also blood tests for just cortisol and it’s absorption as well as scans but I think the symptoms clinch the picture.thank you for your interest and concern. It helps me to talk about it and I greatly appreciate our conversations. I hope we can stay in touch. Rhoda

@windwalker hi Terri. Sorry you are struggling. You will be in my thoughts and I will hope for improvement. I will update you on Mayo’s solutions. My husband and I go in the end of August. Very little energy and despite meds I still have adrenal symptoms. Suspecting that there may be another immune disorder which is exacerbating the adrenal dysfunction. I am a practicing clinical psychologist but can work very little now. I miss it terribly. I miss more quality time with my husband and my friends. Every hospitalization sets me back months even with intensive rehab. I plan carefully about how much I can do in a day and how to manage it around my adrenal medicine doses, trying to pick the strongest times. The questions we have for Mayo are how to minimize the acute episodes and how to improve daily quality of life. I used to be an energetic person, hard working, athletic, happy. I want to get some of that back and will work for it. I just need to know what to do, hence return to Mayo. Thank you so much fo your concern. It warms my heart and helps me to keep trying as hard as I can to get better. It is a lifelong disorder but I have to believe that there is better functioning in my future. Thank you so much and I hope we stay in touch. Rhoda