Trying something different

Since diagnosis of secondary adrenal insufficiency in 2001, I have tried several dosing schedules and doses trying to find what will help me feel “normal”.   Five days ago I changed my dosing times, starting at 6am with 10 mg HC, then 10mg at 9am, 5mg at noon, and 2.5 at 3pm.  So far…. so good!  I am waking up earleir with less drowsiness during the day,and having an easier time with sleep at night.   There has been much discussion online about the generic HC manufactured by Lineage,which is what I have been taking for months now,  Some people are reporting that they feel much better with the brand name CORTEF, so I contacted my doctor, and she ordered me some.  I should get that within a week, and hoping that helps me also.  Of course, I know that you can try something different, change things up and it doesn’t always work, you don’t improve much or for long. But I am willing to try this, pay the extra money for the brand name medication and take a chance.  I have an exciting summer coming, my son is getting married in June, in Colorado, in the mountains! High altitude, happy stress, traveling, different climate……all of which are not the greatest scenarios for us sickies.  Keeping my fingers crossed that a change will be a good thing for me for now.  change-1

The Name Game – A Contest

I’m asking all my creative Friends to help me find a new name for my blog.  I’ve been writing about my adrenal disease for years, but have really avoided discussions about my digestive issues. It can be embarrassing to talk about “poop”, but let’s face it…everybody poops!   Crohn’s Disease can be debilitating and often harder to deal with than my other illness.  My adrenals have been behaving, more or less, so I have nothing to complain about….except my poop problems. I want my blog’s name to reflect my challenge with both Crohn’s and Addison’s Disease.

So here goes.  Whoever comes up with a great name……wins! The winner will receive a box of cheesy Chicago memorabilia straight from Walgreen’s and the Dollar Store…..we have good junk here in the Windy City.

Submit your idea in a comment…..asap….and I will pick a worthy name and send out your prize!

Anniversary

Twelve years ago this month I was diagnosed with a condition that would change my life completely. With a “diagnosis” everyone assumes there is a “cure” and that life will get back to normal eventually. But, that didn’t happen. I understand that I am very lucky that my condition is treatable. If I take care of myself, take my medications and see my doctors regularly this disease shouldn’t shorten my life.  But, it has changed my life.

I cannot get used to the fatigue.  Over powering fatigue.  Debilitating fatigue.  Can’t sit up fatigue.  So weak you hold your pee until it hurts fatigue because the bathroom is so far away.  Feel like you have the flu fatigue.  Miss every party and get together fatigue. Frustrating fatigue.  Hard to cope fatigue.  Impossible to explain fatigue.

Every night when I go to bed I think to myself that tomorrow I will feel better. Sometimes I do….and then I must remind myself to not overdo it…and if I do I will pay for it for days.

Happy anniversary.  I am having cake.

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Do you have Adrenal Disease?

The adrenals are such tiny little things and so is the pituitary gland….so why are they such a BIG problem?  I often joke and say that my pituitary went on vacation and never came back, so my adrenals don’t know what to do. 

I was diagnosed with Isolated ACTH deficiency in 2001, and haven’t been well since.  ACTH is a hormone made by the pituitary gland that signals the adrenals to produce cortisol.  But, like I said my pituitary gland is on vacation.  In my case, there is nothing that points to why or how I developed this disease. 

I am always interested in how other people were diagnosed and how others cope with their condition.  Although my doctor is well-informed, and treats a handful of patients with some type of adrenal disease, I understand I am lucky.  I have heard horror stories from other people about their doctors who just don’t get it.  So, what can you do to make sure YOU understand what is going on with your body? 

  • Support groups and health bloggers are a great source for information and understanding
  • Understand your treatment and meds with the help of your physician and your pharmacist (I have found pharmacists to be very willing to talk and answer questions that some doctors don’t want to take the time to do)
  • Ask Tell your doctor what you want, and don’t take no for an answer, I regularly ask to have my DHEA level checked because I want to know.  She doesn’t necessarily care about it. 
  • Learn to listen to your body, it often will tell you what it wants/needs
  • Be prepared for anything.  Something you might think is small or insignificant can land you in the ER
  • Always keep a list of your medications with you, if you are ill it is hard to remember everything
  • Educate your family so they can advocate for you in case you can’t
  • If needed, make sure you have an emergency injection available to you at all times
  • Wear a medical alert bracelet or some type of ID that will alert emergency personnel of your condition

If you have important hints to share, please do.  Below, I am sharing some of the most important links and interesting people that I have found to learn more about various adrenal diseases.

Addison Village – Here you will find a wonderful group of people who are knowledgable and willing to share all their ups and downs with anyone who asks.  I learned more from this group than any other website

Finding Lana – A great blog written by a woman with Addison’s Disease,  lots of information on her blog!

Simply Suzanna -Suzanna always has something cheerful to say, and her blog is pretty to look at too!

Hypogal – Lisa, who has Sheehan’s Syndrome shares her story with her readers on this wonderful blog.

Addison Disease Facts – A Blog written by my friend Jo, who also helps people through her website Addison Village (mentioned above)

This has nothing to do with Addison’s Disease….I just like it!

http://www.youtube.com/watch?v=qnUZ-Uw05kg&feature=related