tag:blogger.com,1999:blog-9041936322035912190.post3854835079496117887..comments2023-05-17T01:12:21.817-07:00Comments on Clearly Alive: The NightmareAnonymoushttp://www.blogger.com/profile/06636587607618735043noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-9041936322035912190.post-41594947053713163562018-01-04T05:25:20.336-08:002018-01-04T05:25:20.336-08:00Renee,
I am so so so sorry you have experienced E...Renee,<br /><br />I am so so so sorry you have experienced ER nightmares as well. They definitely cause PTSD. I have sought professional counseling after particularly bad episodes specifically to help me cope with PTSD due to medical trauma. I highly recommend it.<br /><br />I have considered a lawsuit, but in the end I did not have enough energy / strength to pursue one. I decided to write instead. My hope is that the additional awareness and continual education will reduce the frequency of these stories.<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-41957204935268820732018-01-03T20:55:41.934-08:002018-01-03T20:55:41.934-08:00Thanks to everyone for posting. I just endured my ...Thanks to everyone for posting. I just endured my second ER nightmare (this time, the hospital of my new endo, who they never even bothered to page), and was trying to explain to my husband the PTSD I am experiencing now that I am home. When the very people you are depending on to save your life refuse to listen, refuse to follow protocol, refuse to learn, refuse to believe you, and—worst of all—refuse to CARE, it’s positively unnerving. And I live in CHICAGO, for crying out loud! There’s just no excuse. Anyone ever think about a lawsuit?Reneenoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-50722169640360818242017-01-30T22:14:37.202-08:002017-01-30T22:14:37.202-08:00Hi Pana,
I would just encourage you to remain act...Hi Pana,<br /><br />I would just encourage you to remain active with NADF or AIU ( http://aiunited.org/ ) Both of those organizations can help direct you on ways to raise awareness. Also, feel free to share any of my blogs with friends and family.<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-37159226191911898242017-01-30T15:56:21.272-08:002017-01-30T15:56:21.272-08:00How long can a person live with this disease with ...How long can a person live with this disease with it being undiagnosed. Has anyone heard of any clin8cal trials where they r using stem cells to help cure or ease the symptoms of this disease? Why do people have cough or asthma with this disease or foot droopAnonymoushttps://www.blogger.com/profile/16418209413790044473noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-88374040352340952072017-01-30T15:47:12.211-08:002017-01-30T15:47:12.211-08:00Isn't it time we did something about this? La...Isn't it time we did something about this? Lack of knowledge of this disease by med community has I am sure killed people. I went to er in full blown adrenal crisis where er Dr said I have no knowledge of Addison disease. I was seizing one after another. They were just standing there watching monitor go to a bp of 84/40. Thank God I had nadf number on my cell phone. She literally saved my life. What can we do? Write the white house and make it mandatory for all medical er staff to know this disease. Any suggestions.. there must be attorney general of health care. My name is Pana macconnell any ideasAnonymoushttps://www.blogger.com/profile/16418209413790044473noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-89177081830209829812016-03-29T08:16:28.298-07:002016-03-29T08:16:28.298-07:00Thank you for your kind words! And thank you for s...Thank you for your kind words! And thank you for sharing my post.<br /><br />I am so sorry about your awful experiences, but oh are they relatable :( May we continue to raise awareness so that the medical community can learn to recognize a crisis and treat immediately.<br /><br />Do you carry an emergency injection? A 100 mg solu-cortef act-o-vial? <br /><br />After this experience, I now take a very pro-active approach by training up family, friends, and coworkers to recognize the signs of an adrenal crash. I want them to inject me with solu-cortef so that I am not at the mercy of a medical system that may or may not understand the disease.Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-88947722226384892802016-03-28T15:10:54.985-07:002016-03-28T15:10:54.985-07:00I cannot thank you enough for posting this. I have...I cannot thank you enough for posting this. I have been through heck in the "best"ER in GA...last crisis I waited 8 hours going in and out of conciousness in the waiting room...after showing them a signed letter from my endo giving them instructions and saying I would die if not treated promptly. I was told that they had patients that were critical and I would have to wait..really??? My husband had to hold me up, and I have no memory of the ordeal until I woke up the next morning in ICU. This is one of many terrible ER experiences...passed out in the bathroom one time and when my mom pulled the emergency cord, no one ever came. She had to wait for me to come around to get me out of there. We told the nurse but still didn't get seen for a couple of hours. My first crisis after my diagnosis by stim test, the dr sent a psychiatrist to my hospital room to "evaluate me for an eating disorder because I had lost so much weight". They had my lab work and knew I had AD. <br />I don't talk much on fb about AD because I don't want to be a complainer. Your post really touched me because it was so familiar and well written. it makes me mad the way we are treated. I have come so close to death, but the level of care never gets better: I shared your post, and I am surprised at how much response I received. Even my nurse friends have never heard of it. Thank you. You really touched me, and I think your post will make a difference.Anonymoushttps://www.blogger.com/profile/01671305686258501316noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-36205081553434240962016-03-26T18:28:18.139-07:002016-03-26T18:28:18.139-07:00I am so sorry for the loss :(
This is why raising...I am so sorry for the loss :(<br /><br />This is why raising awareness is absolutely critical. We are NOT drug seekers. But we do require that emergency injection as soon as possible when we begin to crash.<br /><br />Let us work together to continue to raise awareness so that we can remain Clearly Alive.Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-27414334771783057282016-03-26T11:40:37.233-07:002016-03-26T11:40:37.233-07:00I'm so sorry that you had to go thru hell and ...I'm so sorry that you had to go thru hell and back. I also have addisions and HATE IT! I met a 2 yr old lady who lived in AZ but was from where I live in WI and she flew in last summer as she has children here and we instantly hit it off. We became besties and I got a call 2 weeks ago from her daughter saying her Mom had a crisis and her heart stopped. She was brain dead within a matter of min as no one knew to give her the injection in her purse even though she was wearing her ID bracelet. They immediately called an ambulance and took her to the hospital and the Dr's told her family if she lives she will be brain dead. Two days later they did the right thing and took her off life support and she passed. I can't tell you how much I miss her. This just happened two weeks ago. May she RIP.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-14411418126312389862016-03-26T11:18:42.663-07:002016-03-26T11:18:42.663-07:00I also have addisions and HATE to go to the ER as ...I also have addisions and HATE to go to the ER as they think i'm from outer space. My best addy friend lived in AZ and they labeled her a drug seeker this past fall. She was 42 and just passed away 2 weeks ago as she was in crisis and her heart stopped. She was brain dead and the Dr.'s told her family there was no hope. They made the right decision and took her off life support. May she RiP, I miss her so much.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-87925439816967570432015-04-03T13:30:05.905-07:002015-04-03T13:30:05.905-07:00Oh gosh! I'm glad you were able to finally get...Oh gosh! I'm glad you were able to finally get diagnosed! It amazes me how often this disease is over looked. I'm very thankful you found a good doctor :)Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-10851806807256474682015-02-18T21:52:29.675-08:002015-02-18T21:52:29.675-08:00Hi Amber , I was diagnosed 20 some years ago , aft...Hi Amber , I was diagnosed 20 some years ago , after seeing a family Dr for years that didn't know his ass from a hole in the ground, he kept saying I had the flu, depression, heart problems, all in my head, . Ect.....well finally was so sick , I lost my eye sight. My mom walked me into his office, 2 nurses and this yahoo of a Dr took my blood pressure in both arms, each of them . Finally sending me to the er, next thing I remember, I'm on a floor, a kidney specialist came in , took one look at me and said, I am almost sure I know what's wrong here, let me send in an endocrinologist. The rest is 13 days in the hospital, the endocrinologist coming in every day to give me a shot of potassium, sodium, calcium ..... greatest Dr ever . No insurance at the time, never got a bill from him . The yahoo of a Dr that couldn't diagnosis a cold sent me a bill for 3500$. Never seen him again, even though he wanted to do follow ups with me. See my endocrinologist every 2 months. Best Dr, best person I've ever met. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-54052429091038416552014-01-01T08:20:28.380-08:002014-01-01T08:20:28.380-08:00Thank you SO much for sharing your experiences. It...Thank you SO much for sharing your experiences. It shows how there does need to be more training with how to handle AI in the medical field. Sadly, Adrenal Insufficiency is NOT a condition that you can ignore to make things more convenient.<br /><br />And the prep for a colonoscopy is extremely dangerous for us. I know of several Adrenal Insufficiency patients who end up being admitted to the hospital as a pre-emptive move to be able to handle just the prep. If you try to do it on your own, without playing nicely with AI, yeah... that can easily kill you!<br /><br />Thank you again for sharing your experiences with me. Hopefully, through continuing raising awareness we can prevent more stories like this.Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-31301900890794094882013-12-30T23:35:42.549-08:002013-12-30T23:35:42.549-08:00Amber I am so sorry for your experience. unfortun...Amber I am so sorry for your experience. unfortunately I have several of these stories of my own. 1st one was 3 days after my dx. I didn't know anything about this disease. And because my lungs are involved. they always treat my lungs with steroids. Well this time I was trying to tell them about being steroid dependent,they had NO IDEA how to treat me. at one point my heart rate dropped to below 50 BPM. the heart dr said well some runners have heart rates that low, I said do I look like a runner, I was (AM) over weight-- due to the heavy doses of prednisone they were giving me.. I like you was fading in & out, trying to tell them I NEEDED STEROIDS---the nurse actually TOLD my husband that they were NOT treating me for adrenal insufficiency, they were treating me for an asthma exacerbation-Like you can decide NOT to treat me for AI--that is like saying well we are NOT going to TREAT your diabetes. diabetes effects EVERYTHING & EVERYTHING EFFECTS YOUR DIABETES. You can't just NOT treat it pretend like you don't have it. You can TRY but until I get insulin my diabetes will rage out of control. SAME with AI/AD until you get the RIGHT amount of steroids symptoms will rage out of control. I ended up being there for 6 days & they were so desperate to get rid of me they dropped me from taking 40 mg solu-medrol to 30 mg cortef in 8 hrs time. I CRASHED BIG TIME. Thankfully there was a pulmonary dr there who could actually THINK. she ordered my increase in steroids back to 120 mg Cortef UNTIL I saw my endo. <br />WE AVOID going to the ER until we can't avoid it any longer. I had pinch Sciatic Nerve Pain I hadn't slept in like 36-48 hrs & I couldn't stop crying it hurt so bad. We went to a different ER after our last experience with the last 1 last time. My husband told the er dr that I have chronic pain issues & have chronic pain medicine BUT it was NOT even coming close to touching the pain & having not slept & being in so much pain he was afraid it was going to cause a crisis. The ER dr said Pain will NOT CAUSE an adrenal crisis, Billy said are you kidding me that is like the #1 cause. They took an xray of my back B4 giving me any meds, tears were just rolling down my face as I lay there unable to help control my body in any way the nurses were like I am so sorry, didn't they give you a shot yet? I said no when we were done she went & got me my pain med shot & gave it to me. The ER dr came back in & apologized & said I am so sorry you are RIGHT. pain is THE #1 CAUSE. Because she is on pain management we can't do anything more for her but hope that helps. & sent us on our way.<br />I will tell you about my colonoscopy ordeal next time....that is a good one, they damn near KILLED me...<br />NEVER GO ALONE if at all possible cause when the darkness takes over you (WE) NEED an advocate.<br />From each experience we have learned a valuable lesson for next time.<br />I will share with you what we have learned. right now I NEED to go to sleep !! :)DBeachpeachhttps://www.blogger.com/profile/02681533713337722762noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-38795070294871252032013-11-10T23:47:05.290-08:002013-11-10T23:47:05.290-08:00Well in that case...Well in that case...Anonymoushttps://www.blogger.com/profile/14380206707447644917noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-38583007018426954652013-11-06T17:39:22.628-08:002013-11-06T17:39:22.628-08:00Brent, PLEASE share this story and any other ones ...Brent, PLEASE share this story and any other ones from my blog with your nurse friends. When any of us start slipping towards that dreaded crisis, seconds are critical.<br /><br />A nurse who understands "Adrenal Insufficiency" and the fact that "Steroid Dependent" is not something you question could save a life. Awareness is critical. And awareness happens through dialog. Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-11282696060998780182013-11-06T17:33:57.232-08:002013-11-06T17:33:57.232-08:00I have a ton of nurse friends. Do you mind if I sh...I have a ton of nurse friends. Do you mind if I share any of these stories? Not that I currently have any plans to, but...<br /><br />Oh, and I couldn't finish this one. I got to the part about having to find a spare nurse to get a sandwich and I was done (frustration not boredom). Anonymoushttps://www.blogger.com/profile/14380206707447644917noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-48797957592009799062013-10-07T01:21:06.645-07:002013-10-07T01:21:06.645-07:00All i can say is OH MY GOD!!! this is hideous you ...All i can say is OH MY GOD!!! this is hideous you poor thing :0( i swear i will fight with everything i have to get this injection pen much love to you.<br />PLEASE SIGN THIS EVERYONE IT IS SO IMPORTANT TO SO MANY PEOPLE <br />http://you.38degrees.org.uk/petitions/for-cortisones-sake-give-steriod-dependents-the-life-saving-injection-they-need Rachelhttps://www.blogger.com/profile/07346210113935076540noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-3152214776807683522013-09-11T21:39:28.507-07:002013-09-11T21:39:28.507-07:00Blog added :)Blog added :)Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-38751228865237814832013-09-11T13:03:14.032-07:002013-09-11T13:03:14.032-07:00The knowledge kit is pretty cool. I have the medic...The knowledge kit is pretty cool. I have the medic alert tag but honestly, I've been in the ER explaining what adrenal glands do. Sometimes there are major language barriers and sometimes people think you're not sick because, well, you can't see nausea and headaches - even if they are debilitating.<br /><br />Mostly, I find people just don't listen. They're so busy already diagnosing the next patient that what you say is not important.Anonymoushttps://www.blogger.com/profile/04232264700012880125noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-5730932662089659752013-09-11T13:00:12.667-07:002013-09-11T13:00:12.667-07:00I only found this reply now! I wish there was a no...I only found this reply now! I wish there was a notification sent to my email...so many things to keep tabs on.<br /><br />I considered low cortisol having a hand in itchiness (but not a rash?) until after staying with my parents for a few days and they started itching too...<br /><br />Now I have some really strange symptoms and my dermatologist mumbled "pseudo-lymphoma" before shipping samples off to the path lab. No one seems to have a clue!<br /><br />I'm more than happy for you to include my blog link :) Sometimes I feel like my blog is my inner teenager just whining about life, but if you enjoy it then sure, please share. Maybe someone else will find value too!Anonymoushttps://www.blogger.com/profile/04232264700012880125noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-67727942774508706932013-08-18T13:46:52.811-07:002013-08-18T13:46:52.811-07:00EMDR sounds very interesting! And truth be told, I...EMDR sounds very interesting! And truth be told, I did seek out professional counseling again after this nightmare. It was unbelievably traumatic. It left me paralyzed with fear.<br /><br />Good news? Four months later, the vivid flashbacks have subsided. I can now retell the story without crying. I am all the more determined to speak up and speak openly about this rare disease. Stories like this SHOULD be eliminated, and they can be eliminated through continual education and awareness.<br /><br />Here's to a better future for us with Addison's! :)Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-54023555023649390002013-08-16T15:26:33.936-07:002013-08-16T15:26:33.936-07:00Amber-
Medical traumas are traumas with a capital...Amber- <br />Medical traumas are traumas with a capital T. I have done work with my own therapist based on my own Addison's nightmares (all of my nightmares were prior to a dianosis). My therapeutic work has helped me to climb out of the fear hole. Look up EMDR on google; it is a great and fast treatment for trauma. you can look at emdria.com to find an emdr therapist near you. <br />With Care, <br />JadeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-9749506392584421752013-08-08T20:25:52.823-07:002013-08-08T20:25:52.823-07:00May we continue to raise awareness so that horrifi...May we continue to raise awareness so that horrific stories like mine and yours are completely eliminated.Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-68948855725163704762013-08-08T19:23:28.793-07:002013-08-08T19:23:28.793-07:00OH my gosh, this makes me furious. We've been ...OH my gosh, this makes me furious. We've been through this same exact picture so many times. The ER people are clueless, rude and horrible. Before I got involved in my mom's situation and helping her, she had what we call now an 'episode.' Seizures, black out, could not speak clearly. Somehow she too drove herself to the hospital. The jerks put her in the psych ward. From then on, I got involved with taking her to the ER when problems hit. But still after a dx in 2008, I still find that we have to yell, scream and cuss to get the horrible ER people to understand Addison's Disease. I feel your pain!!!!!Anonymousnoreply@blogger.com