tag:blogger.com,1999:blog-9041936322035912190.post4801314008804844809..comments2023-05-17T01:12:21.817-07:00Comments on Clearly Alive: The Cortisol PumpAnonymoushttp://www.blogger.com/profile/06636587607618735043noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-9041936322035912190.post-23042957222695441382018-05-08T15:52:01.268-07:002018-05-08T15:52:01.268-07:00Thank you Amber, appreciate the time you put into ...Thank you Amber, appreciate the time you put into this blog, i've have been following your updates. Luckily for us, my wife, Tamsyn, is working now and although times can be a struggle she is in a much better place now that 2 years ago. Our next journey is for the pump, i'm sure will be painful at times given the medical profession are still a little skeptical however i'm sure in time we'll be there. Thanks for your story, its great to hear the feedback. David Glassnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-23103181815716206882018-05-08T15:36:43.215-07:002018-05-08T15:36:43.215-07:00Hi Dave,
I assume "loopable" refers to ...Hi Dave,<br /><br />I assume "loopable" refers to the ability for it to be in a closed loop system. For diabetes, this means the pump would adjust the insulin delivery rate based off of a blood sugar reading it receives from some monitor (be it a CGM or just a finger prick).<br /><br />That technology does not exist for cortisol. So while "loopable" is a super fancy, exciting feature for diabetics, it's useless for us cortisol pumpers.<br /><br />We can get by using the older pump technology.<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-8301490519590080712018-05-08T13:36:08.364-07:002018-05-08T13:36:08.364-07:00Hi Amber, My wife was diagnosed in 2016 with AI an...Hi Amber, My wife was diagnosed in 2016 with AI and I can safely say its been a very long hard road for her. Shes finally in a better position, eating well, taking various vitamins such as iron, oil, kelp and licorice root which have had a good effect. I have one question with the cortisol pump, does it need to be a loopable device as when looking at purchasing one many people talk about that as its primarily a device for diabetes. Any thoughts on that? Thanks Dave David Glassnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-58705415670165154662018-05-05T08:54:47.982-07:002018-05-05T08:54:47.982-07:00Oh! And you might find this interesting: https://w...Oh! And you might find this interesting: https://www.youtube.com/watch?v=3kYPR0ox6SwAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-81172601918487842492018-05-05T08:54:25.688-07:002018-05-05T08:54:25.688-07:00Oh how I remember those days! Though I am going to...Oh how I remember those days! Though I am going to give you a harsh reality check: On the pump you'll just be switching one frustration with another. I was so frustrated popping pills 5-6x a day. Now I get frustrated when it's time for me to do a pump site change, because some days I just don't want to play with the tubing, needles, and mixing up of medicine. And I still have to pop pills at least 2x a day.<br /><br />Be prepared to fight for the pump. It is not a magical, quick fix solution and it requires a LOT of work. It's honestly much easier to just swallow pills. However, for many of us, we are willing to do all of the hard (and sometimes painful) work because we view the benefit well worth the cost.<br /><br />Suggestions:<br />- Some people are able to function on just dexamethasone daily. If you get frustrated popping pills multiple times a day, you might be a lucky person that can remain active on just 0.5 - 0.75 mg of dexamethasone taken nightly.<br />- Have you tried mixing different types of steroids in order to make your nights / mornings better? Others have found success with either 1 mg of pred or 0.25 mg of dex before bed, and Cortef throughout the day at 4 hour intervals (8am, 12pm, 4pm, then dex or pred around 10pm, as an example).<br />- Could you ask about Rayos? It is the delayed released form of prednisone. This lets you mimic one of the biggest benefits of the pump (cortisol ramping up at the early morning hours).<br />- If you feel like the pills are just not working at all, ask about sub-cutaneous injections of solu-cortef. You'll give yourself injections every 3-6 hours. This is often a first step to see if you are a good candidate for the pump. BUT it is a bit of a pain.<br /><br />In summary, a person should give up on oral dosing and start looking into the pump when they are willing to do whatever it takes in order to make it successful.<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-78095890429724739382018-05-04T21:38:56.866-07:002018-05-04T21:38:56.866-07:00Hey Amber... When should a person give up on oral ...Hey Amber... When should a person give up on oral dosing and start looking into a pump? I'm in my very upper teens, newly diagnosed with AI, and getting nowhere with mornings, and very little better with nights. I'm active, and I find it frustrating to always be popping pills. Maybe you have a couple suggestions?Anonymoushttps://www.blogger.com/profile/05090320138120918323noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-11859403987536810342017-11-08T17:32:32.347-08:002017-11-08T17:32:32.347-08:00Hi Christine,
I do not give out recommendations f...Hi Christine,<br /><br />I do not give out recommendations for how to purchase a cortisol pump. You must work within your own medical network to determine the best course of action.<br /><br />You can read more on my stance here: http://clearlyalive.blogspot.com/2016/12/the-cortisol-pump-my-journey.html<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-81546791463705405892017-11-08T08:15:30.122-08:002017-11-08T08:15:30.122-08:00Hello
Where can I purchase a cortisol pump. Live i...Hello<br />Where can I purchase a cortisol pump. Live in uk<br />Regards<br />Christine Anonymoushttps://www.blogger.com/profile/09773575289454842721noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-25973325845234533592017-11-01T04:29:41.687-07:002017-11-01T04:29:41.687-07:00I speak more about my journey on the cortisol pump...I speak more about my journey on the cortisol pump in the United States here: http://clearlyalive.blogspot.com/2016/12/the-cortisol-pump-my-journey.html<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-57293669297825091412017-10-31T13:45:33.057-07:002017-10-31T13:45:33.057-07:00Hi Amber,
Thank you so much for sharing this incre...Hi Amber,<br />Thank you so much for sharing this incredibly important and helpful blogpost. I was diagnosed with congenital adrenal hyperplasia when I was three years old. I'm 25 now, and as of the last five years or so, I've had an incredibly hard time trying to sort out my medications/steroid levels. I was wondering if you could tell me how you were able to get a pump, and if you know whether or not it's possible to get one in the States at this time?Anonymoushttps://www.blogger.com/profile/09115078537179980072noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-20734415000924654912017-10-23T15:13:00.534-07:002017-10-23T15:13:00.534-07:00How exciting that you'll be getting the pump s...How exciting that you'll be getting the pump soon! And I'm sorry to hear about the damage in Puerto Rico :(<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-85308306473130790992017-10-23T11:18:58.039-07:002017-10-23T11:18:58.039-07:00My door opened and as soon as a pump is available ...My door opened and as soon as a pump is available again , my Dr will start putting me onto the pump �� due to the tornado in Puerto Rico , the factory is quite damaged. But : Medtronic is the only firm , who's officially allowed to use with hc ! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-36652276330861413552017-10-22T05:34:52.580-07:002017-10-22T05:34:52.580-07:00Sad. I totally replied to this comment but I guess...Sad. I totally replied to this comment but I guess it never posted. Sorry about that Sinead o Donohoe!<br /><br />I'm over three years on the pump and I still absolutely love it. It did help with my chronic fatigue, sleeping problems, muscle soreness, headache, constant nausea, etc.<br /><br />Now it is important to remember that the pump is only as good as its programmed rates. It is not a magical quick fix solution, and you must be willing to continuously tweak the rates until you find something that works well with your lifestyle. But I find it completely worth it :)<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-41485918540983049832017-10-19T12:15:23.565-07:002017-10-19T12:15:23.565-07:00Hi Amber, your a few years down the road with the ...Hi Amber, your a few years down the road with the pump how do you find it ? I've got a adrenal condition and was mistreated for almost 10yrs with wrong dosages, intake times and general bad care by my endo consultant. I am returning to see my new consultant on Fri and want to bring up about the pump. I suffer with chronic fatigue, sleeping problems, muscle soreness headache nausea etc I really want to find the help to get my life back Anonymoushttps://www.blogger.com/profile/06729729395616108082noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-25321216119251744572017-10-18T04:19:04.678-07:002017-10-18T04:19:04.678-07:00May your new endocrinologist be open to the pump! ...May your new endocrinologist be open to the pump! It is an extremely effective method of treatment for those who do not respond well to oral medicine.<br /><br />And that's so awesome about delivering the NADF protocol! I have since relocated from Nevada, but I plan on returning to visit every now and then. I appreciate knowing that they have received the protocol, because that can make such a difference. Thank you for doing that.<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-75811256070612652092017-10-17T20:40:29.903-07:002017-10-17T20:40:29.903-07:00Thank you for the information on the cortisol pump...Thank you for the information on the cortisol pump. I discussed a pump with my endocrinologist about 17 years ago when I was diagnosed. He looked at me like I had more than one loose screw in my head when I suggested it. Recently I found your blog. I gave a copy of your reference articles about the pump to my new endocrinologist. <br />Reading your blog I learned you have or had relocated to Nevada. I don't know if you still live near Reno but if you do, about 1 year ago I delivered across Nevada along I-80 to clinics and hospitals the NADF protocol for treatment for an adrenal crisis. If you or others are ever traveling along I-80 in Nevada and have adrenal difficulty I hope these facilities will implement the proper treatment. Keep up the good work. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-48856164649552431992017-10-04T17:45:42.024-07:002017-10-04T17:45:42.024-07:00Oh, I forgot to also mention this: http://clearlya...Oh, I forgot to also mention this: http://clearlyalive.blogspot.com/2016/05/theoretical-steroid-curve-plotter.htmlAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-83898506341722923302017-10-04T17:23:58.221-07:002017-10-04T17:23:58.221-07:00I've used a mix of cortisol blood draws, saliv...I've used a mix of cortisol blood draws, saliva testing, early morning blood sugar readings, HR readings, BP readings, and just how I am feeling.<br /><br />It's not a clear cut method, and it involves a lot of tweaking up front. For example, if my resting HR begins to climb, I am probably on too little cortisol. But if my fasting morning blood sugar begins to climb too much, I probably have too much cortisol.<br /><br />I wish there was something that gave a clear picture of what cortisol needs the body has. We have to listen to all sorts of little hints from our body. And saliva testing is useful, as long as it's not done in isolation.<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-23457019765219613852017-10-04T10:06:46.617-07:002017-10-04T10:06:46.617-07:00Hi, Amber. Can you share how you came to know how...Hi, Amber. Can you share how you came to know how to program your pump? Our adult son is doing a 24 hour saliva test but from what I've read this does not offer a clear picture of what cortisol needs your body has. Thanks so much.<br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-56366235518398716132017-07-01T08:21:24.379-07:002017-07-01T08:21:24.379-07:00Hi Raj,
Thank you so much for sharing your site! ...Hi Raj,<br /><br />Thank you so much for sharing your site! I've heard good things about the OminPod, many people like the no tubing. I've upgraded my pump now to the 630G. I LOVE the waterproof aspect!<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-84450409676134810332017-03-19T17:23:15.499-07:002017-03-19T17:23:15.499-07:00Amber-- have you also ever seen this one? Wireless...Amber-- have you also ever seen this one? Wireless, waterproof, teeny-tiny! https://cdn2.hubspot.net/hubfs/1775161/Email-Newsletter_LandingPage/LANDING_PAGES/Product_Brochure/Cellnovo-flyer-UK-August2016.pdf (From LJ Markland)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-15733001350740421192017-03-19T16:35:45.636-07:002017-03-19T16:35:45.636-07:00Hi Amber, Where do i buy a pump for my daughter?
W...Hi Amber, Where do i buy a pump for my daughter?<br />Were do get the refills of hydracortisol from?<br />Our GP is near useless.<br />Fred.<br />fred@gas-n-fuels.co.ukAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-3521450533577314722017-03-19T16:32:56.575-07:002017-03-19T16:32:56.575-07:00Hi Amber, Where do i buy a pump for my daughter?
W...Hi Amber, Where do i buy a pump for my daughter?<br />Were do get the refills of hydracortisol from?<br />Our GP is near useless.<br />Fred.<br />fred@gas-n-fuels.co.ukAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-18263731357997448312017-01-01T13:28:38.081-08:002017-01-01T13:28:38.081-08:00Hi Pana,
I know of several that have reached out ...Hi Pana,<br /><br />I know of several that have reached out to the Kennedy foundation to see if they are interested in research / education.<br /><br />They aren't.<br /><br />It's incredibly frustrating, as we do believe that the Kennedy foundation could do so much GOOD for our disease cause, but they do not want that to be the focus of his legacy.<br /><br />~ AmberAnonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-24592024333421415602017-01-01T09:56:37.873-08:002017-01-01T09:56:37.873-08:00Have u ever considered writing Whitehouse.. presid...Have u ever considered writing Whitehouse.. president Kennedy took 60 pills a day for Addison disease. Maybe the Kennedy foundation would like to be the educator of or disease and bring it to the forefront ointment his honor. There r certainly enough Kennedys out there to bring attention and put a face on our disease and hoe ignorant the medical society is to this disease. It seems if u r rich and u or ur daughter or son gets it no one fights or donates. It is my personal belief that even though this disease they say is rare, I feel people die from it before we can save them and find out after there death what they died from. People die because the Dr don't know what dose they give them. I also wonder how much allergies play in this. I just found out I have asthma allergy related and chronic cough which is worse in winter or fall, maybe steroids. I do it myself if I wasn't so sick right nowAnonymoushttps://www.blogger.com/profile/16418209413790044473noreply@blogger.com