I lurk on a couple of Addison's boards and don't post. Most who feel really bad don't listen to posts written by the healthy and it's a waste of my time and energy to say anything. What I consistently read is that once diagnosed with Addison's, all of our lives go to hell. Simply not true.
To live life well with Addison's is hard work, that's true. We all have bad days and sometimes weeks, that's true. Some of us end up in the ER more often than others, some of us don't.
There is hope. You CAN feel well. You can achieve what you want to achieve within reason. What's reasonable is always a moving target, no matter if you have Addison's or not.
Prior to Addison's, I was never able to achieve my potential because I was always getting sick or falling asleep or throwing up. Now, through lots of research, experimentation, eating well, sleeping enough, reaching out to other Addisonian's with my questions, being proactive with my health care and researching some more, I am able to do more than the average American despite my once or twice a year visits to the ER.
I am so lucky that through this blog and websites, I have met some truly exceptional people who do exceptional things and they also happen to have Addison's. You can be one of those people.
Don't let doctors act like gods. Hold them accountable for the drivel that they might be spewing, ask for documentation. Be a knowledgeable consumer and present your doctor with FACTS to back up your requests. Eat well, eat regularly, exercise IF YOU CAN, don't if you can't, set goals and try to achieve them with baby steps, sleep regularly, take your meds on a schedule. It's amazing how such common sense things can make such a big difference in ones life.
Most importantly, don't settle for living half a life. Ask questions, seek answers, know that there are many people with Addison's who live very normalish lives.
Hi Dusty, I am with you on this one. Since my latest med change I have been so well that I wondered if I was doing something wrong ! I really feel well most of the time. I still get bad days and puzzles to solve with the meds but overall feel better than I have in ages. All it took for me was an extra 2mg.
ReplyDeleteToday has been a new experiment in learning. I woke up with migraine but the migraine meds didn't touch it. It was not until the cortisone that the migraine lessened. I fought the nausea long enough to keep the cortisone down. Strange ?
Have you heard of 5am migraines being caused by low cortisone/ addisons ? These migraines started 15 years ago before diagnosis days, and I could never figure out why I would get them at 5am. Have I learnt something today?
I logged into your site today as I know you get migraines.
I love feeling well now. Its a challenge to remember everything, tell your friends what to do in ER, take the water, take the meds, check the electrolytes ... but it can be done. :-))
Yes! Thanks Dusty. I have been lurking on the same conversations. In past years I stood up to the whole "your life is over" argument but these days I can't summon the energy. The latest comment that caused me pause was that some Addisonians might get back to 90% of their previous capacity. Well, I know I'm an unusual case, but I have 110% more stamina and energy than I did in the ten years or more spent in gradual adrenal decline. When I was diagnosed my Endo said that I would live a completely normal life on meds, and I think that shaped my outlook. I never saw myself as being incapacitated by my condition.
ReplyDeleteI don't want to paint an overly optimistic view of life with Addisons, but I think my experiences can provide a useful justiposition to those who have more difficulty managing their condition.
Amen. Dusty. When I was diagnosed in 1997, I heard the same doomsday messages. I am here to tell everyone that there is life after the diagnosis and that even if I didn't have adrenal issues, I would still get sick in other ways. I have achieved more because I got angry with hearing all of the things I shouldn't do. I feel so very fortunate that I can do what I can do. :)
ReplyDeleteyou are awesome. I like you Hope rant.
ReplyDeleteOK, how 'bout, "I like YOUR Hope Rant.!"
ReplyDeleteDusty - thank you for what you do! You are an inspiration (I know I've said that before, but I mean it every time!)
ReplyDeleteI know that I can feel well -truly well - I'm slowly getting there and there's no way I'll give up until I'm able to live my life the way I want to....
Having any chronic disease is a tough road - and I do know what it's like to suffer (don't we all?) but there is always a light at the end of the tunnel - thank God for that!
so thanks again for being there for all of us.
ashley
I know it's silly compared to what you are doing today....but to support you I am making myself stay awake and at least sitting the whole day. I've been busy cleaning and doing as well but I'm not letting myself nap as I usually do...in some small way I'm sending you my support by rooting for you throughout the whole time you are running. I hope you are doing well...
ReplyDeleteHugs,
Shelley
Anonymous with the migraines...sorry you get them, they stink! I'm glad you feel well most of the time, keep up the good work!!! I often get my migraine during sleep (wake up with an aura) or right after I wake up. I've had them like that since age 13 and I was diagnosed with Addison's at age 34 or so. You're right about taking the meds to the ER. It's cheaper to hand them your Solucortef than to use the hospital pharmacy's!
ReplyDeletePip - That was the EXACT conversation that got my hackles up!! I too feel better now with the right hormones in my body than I did for all the years without. you're right, it's not always easy but it can be done!
Anonymous #2 - You're so right, if it weren't Addison's that we were sick with, it would probably be something :) Additionally, every single one of us is older than we were when we were diagnosed! Weakness and illness, in varying degrees, often accompanies aging!
Allison, you're the best!
ashley - Thank you so very much!
Shelley babes, you are amazing and you do so much. You home school your boys, can food and have a business. You're allowed to have days where not taking a nap is a priority! We ALL have those days! Thank you so much for your support!
I love this website because people don't play the "poor pitiful me" game. I think that I lead a fuller life because of addison's disease. Because of modern medicine, each day is a blessing, and I try not to miss out on anything. I feel great but the information shared on this website is allowing me to feel greater! I am now taking DHEA as a direct result from the website information and I feel completely normal. Thank you, Dusty, for having the courage to speak so openly about your condition. No one knows (except for immediate family and friends) that I have addison's. Please know how helpful (medically and emotionally) your website has been.
ReplyDeleteKeep up the good work and please visit anytime you are in louisiana. dottie
Dottie, thank you so much for your kind words! It makes doing all this so worth it. Sometimes I feel like my opinions are kind of "out there" and frowned upon so it's good to know that you and so many others approve of what I say!
ReplyDeleteKeep feeling well!
:) Dusty
Amen, sister! Great rant!
ReplyDelete