tag:blogger.com,1999:blog-9041936322035912190.post8681674514736408264..comments2023-05-17T01:12:21.817-07:00Comments on Clearly Alive: 2013, A RecapAnonymoushttp://www.blogger.com/profile/06636587607618735043noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-9041936322035912190.post-51328718975150601632014-04-12T20:33:18.071-07:002014-04-12T20:33:18.071-07:00Please send a facebook message to clearly alive ar...Please send a facebook message to clearly alive art :)Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-90270252349721901072014-04-12T20:13:28.116-07:002014-04-12T20:13:28.116-07:00Are you able to share with me the name and locatio...Are you able to share with me the name and location of the endocrinologist you saw on August 20? I would like another opinion for myself. Thanks.Dianahttps://www.blogger.com/profile/03757352071122296900noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-10222629806926592162014-01-10T17:39:29.383-08:002014-01-10T17:39:29.383-08:00Ha! We even have the same mentality! I am quite th...Ha! We even have the same mentality! I am quite the overachiever and the fighter. I think that has helped me greatly with my journey with Addison's Disease. I just refuse to quit. It's not an option.<br /><br />Hey, find me on facebook :) On the left side of my blog, there is a link to my FB art page (aptly labeled "facebook"). Send me a message there so that we can chat more.<br /><br />As for my opinion on caffeine? I mostly stay away from it. I'm not really a fan. If I'm low on energy but don't want to take more HC, I reach for something super super salty. I know of other Addisonians who drink pickle juice, but I like Olive Juice personally.<br /><br />And better cortisol coverage should help stabilize blood sugars. I hope you notice an improvement with the spacing of your medicine! I should devote an entire post to the research behind that. Most doctors are unfamiliar with it. Which I don't fault them for that. They have hundreds of patients. I only have one me, so of course I am going to be actively researching and constantly learning about my disease and it's implications.Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-54812252967745824072014-01-10T08:21:38.546-08:002014-01-10T08:21:38.546-08:00I have so many things I would love to hear your th...I have so many things I would love to hear your thoughts about! It sounds like we may be around the same age, and in challenging professions. Unfortunately, I was born as an overachiever in addition to having Addison's. I tend to take on a lot more than my body can handle (usually on days that I feel healthy and forget I have a serious illness...). Four years after my diagnosis and I may still be in denial... Is that bad? :) <br />I have changed doctors 3 times, and since I just graduated and started work this year, I will be switching again. I have struggled to find an endo that I feel listens to me. If my symptoms don't fit into the mold they expect, they would basically tell me I wasn't having them. <br />What is your opinion on caffeine? I think I sometimes use it when what I really need is more HC. I have heard it's not good to use caffeine with Addison's. I also sometimes feel like my blood sugar drops out. Is that something that will be fixed by spacing out my meds? I am using your advice and trying to take them throughout the day today. :) We will see if it helps! Samanthanoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-18458139431118056682014-01-09T12:13:10.423-08:002014-01-09T12:13:10.423-08:00Amen to that! :)Amen to that! :)Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-68794263581288935172014-01-09T12:05:08.294-08:002014-01-09T12:05:08.294-08:00Welcome Samantha!
I'm so glad you found my bl...Welcome Samantha!<br /><br />I'm so glad you found my blog! And it does sound like you have the very dreaded "moon face" that is associated with improper steroid distribution. Here's a super frustrating part about Adrenal Insufficiency: You can both be over supplementing and under supplementing at the exact same time.<br /><br />HC pills last in the body 4-6 hours. By taking only 20 mg HC in the AM, you are giving yourself a mega dose to start the day with (thus the signs of over supplementation). Then the rest of the day, you're starving your body (signs of under supplementation). I've recently learned about the Circadian Rhythm and how it relates to cortisol distribution (See this for more information: http://www.cahisus.co.uk/pdf/24%20HOUR%20PROFILE%20ASSESSING%20CORTISOL%20REPLACEMENT%20ADDISON'S.pdf)<br /><br />Our goal is to mimic it as closely as possible with our pills so that our life can approach normalcy. This is done by taking a large dose in the morning and slowly tapering our dose as the day continues. The goal should be to have 2/3rds of your medicine in your body by lunch.<br /><br />I now take my medicine four times a day, roughly four hours apart. Also, when I "stress dose" due to illness, I now double both the amount of steroids and the frequency I take them.<br /><br />For 30 mg HC, you can break your dose up into 15 mg upon waking, 7.5 mg at lunch, 5 mg around 4pm, and then (if needed) 2.5 mg around 8pm. It is critical that we take our medicine around the same time every single day. If I am even 30 minutes late with my dose, I feel it.<br /><br />And with the FC, if you have Primary Adrenal Insufficiency (Addison's Disease), you really need it. Because our entire adrenal cortex is kaput, we produce neither aldesterone nor cortisol. The aldesterone plays a key role in regulating our BP and electrolytes. I wasn't prescribed it the first four years I was diagnosed, but I'm on it now!<br /><br />And I hear you on that "steroid guilt!" I'm struggling with an infection at the moment. For infections that require doctor's intervention, we should double our dose no questions asked. Yet, I didn't want to even though I'm pretty CLEARLY sick. Luckily, I have a good group of support that reinforced the stupidity of my thought process. Until I beat this infection, I'm taking my medicine every two hours. By being super pro-active about it, I am hoping to avoid emergency medical treatment.<br /><br />Please keep in touch! It is SOOOO nice to be able to chat with others who actually understand :)Anonymoushttps://www.blogger.com/profile/06636587607618735043noreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-42796501713826018802014-01-09T10:54:41.605-08:002014-01-09T10:54:41.605-08:00Thanks for the shout out! I'm so glad we met a...Thanks for the shout out! I'm so glad we met at the expo and even more grateful that we're able to share our stories. Your mission encourages me to keep going. Here's to a happy and healthy New Year!Caseyhttp://www.purelythriving.comnoreply@blogger.comtag:blogger.com,1999:blog-9041936322035912190.post-17537922562820598442014-01-09T08:15:08.009-08:002014-01-09T08:15:08.009-08:00Hi Amber,
I am 23 and was diagnosed at 19 with Add...Hi Amber,<br />I am 23 and was diagnosed at 19 with Addison's. My sister sent me a link to your blog, and it has been amazing to hear someone who understands what it's like to be this age and not be "normal." I have had similar issues with moving doctors fairly frequently. <br />I actually had a question about one of your posts. You showed a picture of you when you were taking too much HC and then when you had your dosage fixed. I honestly don't even recognize myself in pictures currently because my face is so swollen. I was wondering what you have changed with your dosage? I currently am prescribed to take 20 mg HC in am and 10 mg in pm, but I usually only take the morning dosage. I also am prescribed to take FC "as needed," but I think we are similar regarding the "steroid guilt" you talked about. So glad to have someone to discuss this with!Samanthanoreply@blogger.com