I read other Addison's forums in addition to my own forum. This morning I saw a post on another forum accusing a high functioning, non-martyr Addison's person (Jim) of being "lucky" with his health. Jim is really active, takes his meds 6X a day and has a great quality of life. He's also not afraid to speak his mind about Addison's facts and treatment. I wish more people would emulate Jim and try his techniques instead of whining that taking meds that often is too much work.
From my experience with Addison's, luck has NOTHING to do with quality of life. Those of us who have good Quality of Life work damned hard to get to where we are.
Common denominators in us "lucky" people with good quality of life:
- We research our conditions
- We proactively work with doctors instead of following doctors blindly when it comes to our treatment
- We replace hormones that are missing
- Almost everyone I know who has a good quality of life is on less steroid than they need on a regular basis (Lymes peeps included) and consistently underestimates their needs, we rarely over replace
- Speaking entirely for myself on this one. Instead of relying on HC sometimes to keep me going so I can do more, I take the opportunity to use it to rest my body
- We take our bioidentical meds physiologically. If our doctor has given us different instructions, we tend to keep that in the back of our mind and experiment with amounts and timing
- I think everyone I know who has a good quality of life is on HC as opposed to a long acting steroid (if you are the exception, that's awesome but for the most part HC is the thing for people with good QoL)
- We don't drink diet soda or regular soda for that matter
- We sleep enough and regularly
- We eat well and regularly with more protein and salt in our diets than the usual person
- We get exercise regularly or get activity during the day like walking 5 dogs at once (for you L xo)
- If we're not feeling well, we take a look at all factors and don't blame the Addison's first
Yes, there are people who do all of this and their QoL still sucks. Guess what? They are usually the most educated and spend an incredible amount of time on 1 & 2. Eventually, they will feel like their Quality of Life matches the effort they are putting into their health. These people are, by no means, "lucky."
As you can see, much of QoL is not "luck," it's hard work, lots of research and a healthy lifestyle. Secondly, it's taking bioidentical meds (particularly HC) in a physiologic manner. Yes, it's hard work to go to bed when everyone else is watching movies, it's hard to set up pills for a month, it's hard to make sure there's good, healthy food on hand at all times, it's hard to get regular exercise (especially with chronic medical conditions) and it's hard to take meds multiple times a day. Give it a try and see if your Quality of Life improves.
Hard work does NOT equal luck.
21 comments:
Dusty this is such a good post. I live with AD and am active and honestly feely better than I have for so many years when I was undiagnosed. I am thankful for meds and thankful for each great day of activity. I love your mind set and appreciate the encouragement I have received from you through this blog as well as the support forum.
Thanks Diane (I'm guessing Diane wrote this)! I feel the same way about meds, activity and my life previous to meds.
:) Dusty
Well said Dusty! Many of us have the same outlook as you and hope those that don't continue to work toward that. For me, it's not hard any more. It's a way of life that I have come to accept. A life that is pretty damn good..
Chris
Yes, yes, yes, yes, yes! I was going to email you privately expressing those exact same opinions!!!! I feel 110% better after my diagnosis than I ever did before. I take the lowest dose I can get away with and, (mainly thanks to you telling me off) I've learned how to tell when I need more, and then take it. I exercise and I make sure I get enough sleep. Plus I also do all of this while managing three other autoimmune conditions and getting over last year's brain surgery. I don't think that I'm superwoman. I was just told by my Endo that I'd live a full and normal life on my medication and I adopted that attitude for myself. Sitting around complaining about how rotten life is really isn't much fun after all! Much more fun just to get out there and live it.
Dusty, you are right. I realize that one can do everything right and still not have the quality of life that one deserves, however, I choose (and each person has the capacity to choose) to move beyond a diagnosis and to take control. I realize that I have (and am) lazy about certain aspects of AD, but overall, I feel like many people who complain about the quality of their lives are looking for someone else to "fix" THEIR lives. I am thankful each and every day that I can do the things that I can do. You are also right about the medication issues (multiple times, HC, not relying on more HC to do more, etc). I choose to embrace life and to live this life to the best of my ability. Dusty, you, my friend, do this even more admirably!
Thanks for the comments. I love knowing that there are others that feel the way I do. I wish I knew you all.
I'm lucky to know Linda who is probably the most active person I know! Despite what she says about me, she does more than I could ever hope to do!!!
Thanks everyone!
:) Dusty
You are on a roll, Dusty! I could wax on, but I'm on an iPhone in a hospital bed. I feel confident that I will walk out of here tomorrow taking control of variables (non-Addison). That have been dogging my QoL for years (no offense to L's dogs). Despite my frustrations I've never given in to feeling like shit. I'll take any inconvenience to live my life to the fullest.
Thanks so much for your support this week, Dusty. It means the world to me, Jersey Girl. I'll update on the forum in a day or two.
Mike
This post was very inspirational, i really like it! :)
My daughter has AD and after doing some research on the web, I found your website. Very inspirational, I am emailing her a link to your support page and your blog. As a marathoner and an Ironman, I am inspired by your story.
I've been having a struggle this summer because I've had ither medical issues going on besides the secondary addison's. I was getting frustrated with all the pills, but still trying to maintain a daily exercise as well. Your post really resonated with me. i think I'm finally starting to make my way out of the woods.
Holly,
If you're getting frustrated with all of the pills, check out this post:
Really, how hard is it? (An Addison's rant)http://addisonssupport.blogspot.com/2010/09/really-how-hard-is-it-addisons-rant.html
Having a big pill organizer like this takes most of the frustration out of the day to day pill organizing and remembering if you've taken pills or not. I am lazy and only like to get all the bottles out once a month. On a day to day basis, I know if I've taken my 11 am or 2 pm dose or not (because I sometimes can't remember!).
Way to go maintaining day exercise! I hope it is going better and better for you.
:) Dusty
Dusty been reading your blog off and on for a couple of months. I love the way you think and applaud you. I was diagnosed Nov 2008.
I will be 49 this Nov and let me tell you I have never felt better in my life. I started running in April this year and wish I would have started years ago. I've always been active but I really make a conscious effort now to keep moving. I appreciate my health and I never want to take it for granted. Thanks for your testimony of living with AD. It really is an encouragement to many. ~ Mary in Ohio
Thanks Mary! I love to hear about other Addisonians who are doing well!!
:) Dusty
Great to hear all the AD folks that are doing well. I on the other hand do not. 2 hospital stays, 2 yrs. undetected and finally diagnosed in Mar 2010. Anxiety, stress, lack of concentration/sleep etc.. etc...
I hate how i feel.
Started out on 30mg HC have whitled down to 7.5MG daily with no change. My eyes took a direct hit from all of this. Went from no glasses at all to over 2.25.
The vision is one thing but how they feel is the worst. Like they are coated with Saran wrap or like somethings growing on them.
Just had Peripheral Iridotomy's on both, my angles are bad as well, (no change)well except for the glare it left me with. Now i have a UBM scheduled, some kind of Ultrasound.
Something is not right, i feel it in my eyes. I'm so angry and frustrated by it all and not sure what i'm doing next, literally.
TC
Rob
Rob,
I'm so sorry you're not doing as well as you'd like!
Have you checked out my Addison's forum? www.addisonssupport.com
My first thoughts for you are, have other diseases been ruled out? Are you taking your meds physiologically? What other diseases do you have? What are your other symptoms? Primary or secondary? How long have you been diagnosed?
Come on over to the forum! Everyone would love to meet you and give you ideas for things that might help you!
:) Dusty
Delighted to come across this blog - when I've googled addisons before there has been a bit too much doom & gloom and lying in bed getting depressed for me. My experience is quite different.
I was diagnosed 6 yrs ago an run a successful small business enjoying a very full life. I have become much better at listening to my body & I make sure I sleep enough.
the only thing I would say is that I can't take HC as after about a year it stopped working, passing straight through me. I now take dexamethasone in a split dose. Though long acting in theory, I find a split dose works better than a single one.
Anyway cheers!
Best wishes from Scotland
Jane
Jane,
Thanks for reading my blog. Definitely not much doom and gloom here unless I hurt myself!
I recently completed Marathon des Sables (150 miles running across the Sahara) with no Addison's complications.
There's so much we can do when we put our minds to it and educate ourselves.
If you're interested, I've got a forum www.addisonssupport.com. There are lots of healthy, functioning Addisonian's there!
:) Dusty
I was just diagnosed with Schmidt's syndrome, or type II polyglandular autoimmune syndrome, this week. Strange thing is I've never had a symptom that I know off . . . probably caught early. I hope things turn out for me as well as they have for you. I am an active 37 year old man with three young kids and a loving wife. Most of what I've learned online is very informative, but there are lots of writers out there that are very down about this. I hope that I can get on top of this and avoid experiencing a crisis or feeling ill. I also hope to maintain my active pace, demanding employment, love of travel, mountain climbing, and scuba.
Craig, come join us at the Addison's Support forum. Www.addisonssupport.com
Make sure you have spare HC and know when to use it. 250 mg Solucortef Activial, Zofran, medic alert bracelet and emergency instructions before you hit the back country or scuba and you'll be fine!
I've tried to post the below text to Addisonsupport.com, but it's not taking. Maybe it's hung up waiting on permission, or maybe it got lost in the Internet black hole. Eager for info. Maybe you could help?
___________________
Diagnosed . . . now what?
Hi all, my name is Craig. First I'll share my background, and then ask some questions.
Background:
On November 21, 2012 I was diagnosed with polyglandular autoimmune syndrome type 2 presenting with primary adrenal insufficiency and primary thyroid insufficiency . . . so I'm brand new out of the box with this. Primary autoimmune thyroid insufficiency was picked up one year ago by my primary care MD after a routine physical. I had/have no symptoms. He put me on replacements. After getting on thyroid replacement, my primary care MD has upped my dose three times. Three weeks ago, after a weekend of high fever, sweats, and chills, my wife found me, in the dead of night, on the floor, white as a ghost, covered in sweat, and unconscious. She called 911 and I went to the ER. They measured my sodium at 126 (near coma levels) and found pneumonia, so they ordered me a round of Zpak, gave me two bags of saline, and a shot of Demerol. No steroid was administered and no ACTH or cortisol test was run. I walked out of the ER three hours later. Three days later, upon follow up, my primary care MD picked up on the low sodium value from the ER along with my dark skin color, and ordered an ACTH and Cortisol level test. My ACTH was 416 (very high), but my cortisol was (barely) in the normal range. He referred me to an Endo. At this point I started researching high ACTH and, with the prior autoimmune hypothyroidism diagnosis, I quickly figured out what the diagnosis was likely to be. I got in to see the Endo MD two weeks later . . . he took one look at me and ordered the ACTH stimulation test. Mind you I felt, and still feel, right as rain. I've never felt ill from this or the hypothyroidism. I work out, hold a demanding job, travel, and chase after my three young daughters just fine. So I wasn't "for sure" that I had Addison's because most stories I've read of how the diagnosis is finally made involve really sick people that have been in and out of the ER for months or years. That's not me . . . at least not yet. Anyway, I got the results from the ACTH stimulation test a couple of days ago . . . very weak cortisol response to ACTH stimulation. The diagnosis I suspected is confirmed. My Endo put me on 15 mg of hydrocortisone in the morning and another five mg in the early evening. I've been on this for two days now. I feel no different than before, that is, I feel just fine.
Questions
1) I guess I need to know the next step. I'm concerned about going into crisis. What are typical early symptoms that I should be looking for to clue me to the need to take some extra oral hydrocortisone to overt needing an emergency injection or going into full blown crisis?
2) As my naturally produced cortisol falls over time, what are the signs I need to talk to my MD about increasing my replacement dose.
3) Has anyone been able to get underwritten for life insurance post Addison's diagnosis? I thought I had enough, but now with this I'm not so sure. If yes, tips on getting this done? Who is your insurer?
Thanks and Best Regards,
Craig
BTW: fat-fingering your name is what happens when you open a new email account after downing one too many.
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