Runners, you might want to sit this one out. It's an Addison's rant that might bore you...
I spend a great deal of my time and energy answering questions on my forum, fielding phone calls, exchanging texts and responding to personal emails regarding Addison's Disease. I've been doing this for over three years now and I'm noticing a trend.
Some people ask me for advice or information. They print out the info, read it, learn it and pass it on to their doctor (via paper or verbally). They then do research to round out their understanding and tailor their knowledge to their own experience. They make some effort to conform to the habits that people with Addison's Disease need to follow (as backed up by medical research, not just opinion). They post to my forum, call, email or text me with new information that sometimes contradicts the info that I've given them and sometimes dovetails nicely. I learn from these people. They are the survivors, they are the people who get well or, at the very least, handle their circumstances as they come along. They fight like hell.
Oh, the victims, just the thought of the HOURS and DAYS I've spent providing information to these people made me sigh aloud! They are apparently too ill to print out the medical studies that I've researched and linked for them. It's too much work to print it out, let alone read it, understand it and take the info to their doctor. They are too ill to beg someone to print out the link for them also. They are too tired to find someone to be an advocate for them. Apparently contacting me and asking me question after question (which they promptly dismiss outright or just ignore), might have magical powers and cause them to be well. Ugh, I've even offered to talk and give info to a partner but it's too much effort for the partner to call me and collect information for the sick person. I understand how it feels to be sick and unable to do much for months at a time. There's no way to get well if you have doctors who are mistreating you because you won't inform yourself. NO WAY. It seems that often doctors cause a cascade of problems for people with AI and treat symptom after symptom with drug after drug, causing the inevitable extended hospital stay and prolonged pneumonia (seems to be really common for people with AI).
Don't be a victim. Read about your diseases and how they are best treated. Experiment within reason on your own to see what works for you and your body. Get deficient hormones replaced to normal, MIDRANGE NORMAL, ranges!!!!!!!!!!!!!!!!! There's absolutely no way you can stop being a victim without learning and understanding your diseases.
The best way to start? Read the medscape.com summary of your diseases. PRINT THEM OUT. Ask people who have the diseases what they do and see if it's reasonable for you to emulate what they do (with a doctor's permission). Be a freaking survivor, damn it!
If you want to be a victim or martyr, please evaluate your motives. Are you "happy" in the victim role? Is it "easy" for you? Are you scared to have a life outside of sickness? Do you think that getting well means being confrontational with doctors (IF YOU BELIEVE THIS LOAD OF SHIT, YOU ARE VERY, VERY WRONG. Getting testing and treatment you need with doctors can be done nicely and so that they don't even notice.)? Do you just fear change? If the victim talk made you mad and you can relate to it, think about your motives for staying a victim and see if any hit home.
Start doing and become a survivor. Stop being a victim.
GET WELL AND LIVE.
12 comments:
Amen, sista! But do the victims read your blog?
When I was first diagnosed I think there was definitely a feeling of being a victim for a while. Once everything settled down and now that everything is completely controlled, I find that I forget I have Addison's for days at a time. Of course I take meds but I don't think "I have Addison's" when I take the meds, I'm usually just thinking "time for meds." My husband definitely forgets I have Addison's too.
In my opinion this is great progress! Advice to people: get control of your medical problems, follow the advice and listen to your body too, and lead a normal life, including healthy eating and lots of exercise!!!
Dusty is an inspiration to everyone, diagnosed or not!
Thank you, Dusty, for the kick in the pants.
Most days I feel horrible and can't get the energy to fight the fight needed. I do not have a martyr sydrome. I want energy. My mind is that of an energetic and motivated person. I have big dreams. But, my body doesn't cooperate. By the time I get dressed and have breakfast, I'm ready to go back to bed. I've never discovered an adequate cortisone/fludrocort dosage.
Because my endo has another Addisonian who runs marathons, she dismisses my complaints as being unwarranted. It's frustrating that she lumps us together. Because he feels fine, she thinks I shouldn't have any problems.
Unlike Erin, I do feel ill every single day. My family can tell just by looking at me when I'm not feeling well. I turn grey and can barely hold my own weight.
I have my own business because I can't count on specific hours each day to be able to work for someone else. I'm not whining . . . but, it's the reality that I live with.
I remember quite a while ago, Dusty, you wrote telling Addisonians to accept their situations and to stop feeling sorry for ourselves. I learned a lot that day and took it all to heart. Instead of beating myself up for my shortcomings as I had done for many, many years, I learned to accept my limitations, create my own business, and then work around the good and bad times of each day. I've also learned to ignore my endo's snide comments about the "other Addisonian who runs marathons." Like you taught me . . . that's him, not me. I'm trying daily to accept that.
Thanks for your continuing acceptance and encouragement. I am a survivor, not a victim.
Thanks, Dusty, for the kick in the pants.
Unlike Erin, I feel sick every single day and quite often find it very hard to find the energy to fight the fight. I've never been able to figure out the adequate amount of cortison/fludrocort. By the time I get up each morning, have breakfast, and get dressed, I'm ready to go back to bed. At times, I can barely hold my own body weight.
I refuse to be a martyr. My mind and personality are filled with ambition. But, my body does not cooperate.
My endo has another Addisonian who runs marathons, so she constantly dismisses my complaints because she thinks that I should feel like he does. She lumps us together.
Dusty, a long time ago you wrote an article where you told us to accept our limitations and stop feeling sorry for ourselves. I learned a lot that day and have stopped beating myself up as I had done for many, many years. I wanted the energy and endurance of everyone around me. I've come to accept my differences. Thank you.
I created my own business so that I can work during the "good" hours each day.
Thanks for your continued encouragement and acceptance of the different levels of Addison's. As you've said many times, we are each different and experience the disease differently.
You ROCK Miss Dusty!! I sure miss you. And I think you are terribly smart...
Hugs,
Shelley
You ROCK Miss Dusty! I sure miss you AND I think you are terribly smart!
Hugs,
Shelley
Love the rant, sometimes I just can't get myself to read the comments on the forum, even though I have gotten support there I can't read them because there is so much poor me type print. The reality is I have Addison's, hypothyroid and as a result lead somewhat a different life. But the differences are my responsibility and with the help of my medical team and family (whom I also need to educate and be honest with) I want my life to be full and rich and exciting. Thanks for all you do Dusty. Thanks for the honesty but to me you are an inspiration of someone who has seized life and is living it to the fullest and pushing yourself to try more.
blessings
Dusty, firstly I'm too long in saying hello and congrats on your escape from eternal winter! I've missed you. btw, thanks for taking all of my questions over the last few years ;-)
This rant resonates with me, and I don't commit a fraction of the time you do for others. But I know where you're coming from. Having AI as just one factor of the constellation of diseases I have to manage with POEMS syndrome I don't find I have much time for self pity.
I do however relate to victims showing up on POEMS Syndrome forums claiming to have the disease but refusing to share their case history so any one of us who do live with it can help them. I'm not sure what possesses some folks to want to have such an awful disease to begin with. But I think you nailed it with this!
Mike
Thanks all. I wish I could find a way to reach the martyrs. You are all survivors! The martyrs unsubscribe from my blog or don't text or email me back when I bluntly tell them to think about their motives for not taking any steps to get well. What a terrible way to live.
Erin, thanks for the head's up. Links are fixed. I appreciate you letting me know.
Debbie, are you on the forum? Sounds like you need thyroid help or you possibly have anemia, lyme or parathyroid disease that's untreated and undiagnosed.
Shelley, I miss you too and hope to see you post on the forum one day.
Diane, thanks and I understand. :)
Mike, I'm so glad you found your monster and are fighting it!
Hey all, thanks for your comments!
Dusty
thank you, love this post and you expressed my sentiments EXACTLY - over people not fighting for themselves in all aspects of their lives. And the beat goes on....
Hi again,
I guess I don't know about the forum. I'll go to the home page and look for it.
In response to your comments:
"Sounds like you need thyroid help or you possibly have anemia, lyme or parathyroid disease that's untreated and undiagnosed."
Recently, I've asked my endo to run tests for anemia and she will do so at my next lab. My TSH always tests normal, which seems odd to me because both of my parents have had thyroid surgery and one of my kids has Hajimoto's.
Lyme = we don't have ticks in my area.
Parathyroid = I don't know anything about that. I'll do some research.
Thanks for your suggestions. I spend a lot of time researching nutrition and health sites for anything new because I'm determined to feel better.
Another strange thing . . . yesterday my 85 year old mother got really sick and her doctor wants to test her for Addison's. She's always run circles around me until recently. But recently she shows all the symptoms of Addison's. I'm now wondering if a lot of seniors might have Addison's undetected because my Mom keeps saying that all of her friends feel the same way and they've all just figured it was because of old age. I think it would be terrific if the medical community could add a few good years onto the last years by giving cortisone treatment. It's something else to research.
Thanks, again, Dusty. I always love reading your articles. I'll look for the forum that you mentioned.
Hello to all,
I am new to AI and to post secondary whatever that shuts down your pituitary glands. I am 30 just turned 3 months ago. I was hopitalized 3 times with the docs saying it is dehydration cause my age and a college town.
Maybe more effort should be put into doc's to find better tests for younger age groups. Or to just bring it to there attention that there might be something else.
I was a U.S. Army Ranger 10 years ago and could run forever. Standard was 5 miles in 40mins or less with no problems. Today since I clean the house I get to pay for it by havinng no energy and slowness. I am new to this and it has taking a hit to myself and everything. I would rather be in the thick of it than being this way.
More tests still to run hope they all come out fine
I will fight but right now I don't feel like fighting.
Dusty- this is my first look at your blog, & you are one incredibly encouraging, optimistic & honest chick! Something, that I have sadly, discovered since being diagnosed with Secondary Addison's & a low functioning Pituitary Gland (march 2012), not many others with a chronic illness portray.
After about 2 yrs of just feeling crummy, then an emergency hysterectomy at the age of 31, last July (2011) - after not ever feeling fully recovered, I finally was able to find a GREAT Dr. (internist) who had me tested for Addison's days later & in to see an Endocrinologist in less than a week. I will be forever grateful towards my PCP & all he has done to really get "all of my ducks in a row".
I have never felt like a victim, nor the martyr mentality- but I can see how that could happen quickly. Rather, as a Mother with 2 young munchkins (ages 4.5 & 2.5 - yep, 19 mo apart! Whew!!!), I feel it is absolutely my responsibility to push myself (even to a place that is uncomfortable or where I hate to be) to be the Mama they deserve. Yes, I have days that are much more difficult than others, where the exhaustion, low BP (& all that goes along w/ that...) are at all time highs- but those are the days that I get to cuddle with my littles in bed, read stories, color, watch a movie, talk, sing, etc. Is it exhausting? YES! Yes, it is - but I can't help but already feel incredibly guilty for being a Mother with a chronic illness - the last thing I'm going to do is allow it to confine me.
Again - w/out the incredible support from my husband, living a very active lifestyle (previous to dx of Addison's) & my children - I think I could most def fall prey VERY quickly into victim mode.
Thank you for this incredibly important reminder! We each chose every day in which we wake to take the day as a beautiful one that we were incredibly blessed with or to waste it feeling miserable (as I do believe there are some components to mind over matter within the realm of chronic illnesses). I'm doing my best to be thankful for each day I wake, & take each day as it comes. In no way, am I trying to convey that I do not have bad days, as of course I do - yet I do try to put it in perspective. Could life be worse? ABSOLUTELY, much much worse! Could it be better? Again, ABSOLUTELY, and that is something u can take part ownership in -
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