Wednesday, May 9, 2012

My first entry

What is Addison's Disease, you might ask.  Maybe your already familiar with it.  I know I had never heard of Addison's Disease until six months ago.  I was diagnosed in November shortly before Thanksgiving by an endocrinologist who verified the diagnosis through an ACTH stimulation test.  I began exhibiting symptoms around March.  The symptoms were so varied, that they sent me on a wild goose chase to many different specialists.  My symptoms were:
  • Dizzy/Vertigo feeling especially with exertion
  • Vision trouble
  • Difficulty breathing
  • Exhaustion which I would describe as a stupor
  • Severe headaches/similar to migraine
  • Sensitivity to smell and sound when symptomatic
  • Diarrhea
  • Occasional vomiting
  • Heart flip flop/palpitations
  • Irritability
  • Very low blood pressure
These symptoms became more severe with the three digit temperatures that we experienced in the summer and were further complicated  by a low sodium diet, jogging, and recovery drinks which contained potassium.

It took me six months to get a diagnosis, which was quite the confusing process.  My symptoms were pretty scary to me, so it was definitely a long six months for me and my family.

Addison's is a pretty rare disease effecting 1-4 people out of 100,000.  The adrenal glands don't produce some of the hormones that are essential for every day life throwing the electrolyte levels completely out of whack.  The body wastes salt, and as a result, dehydration is a real concern with this disease. 

I take hydrocortisone to replace cortisol 10 mgs in the morning and 5 mgs at noon.  I also occasionally take DHEA (a supplement).  I'm still trying to figure out the correct dose on that one.  I also take fludrocortisone depending on how much I have sweat due to heat or a workout.  But this one makes me swell pretty badly, so I am also trying to figure out the correct dosage.

My Addison's Disease is autoimmune, so I do catch viruses etc.  that are going around a bit easier, and it takes me a bit longer to recover.

I'm still adjusting to having Addison's, and the realization that it is a lifelong struggle isn't always easy for me, but I'm thankful that it is something that is manageable with proper care.  I am starting this blog as a health diary for myself, as well as another way to connect with others who share in this diagnosis. 

Please don't be shy about commenting, I would love to meet you and would love to hear your story!
Blessings!
Alicia
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4 comments:

  1. NJOMay 14, 2012 at 6:18 AM

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  2. NJOMay 14, 2012 at 6:36 AM

    I really appreciate your positive attitude to living with Addison's Disease. I can relate to where you are on your Addison's journey. I well remember the swelling from fludrocortisone...I had such a hard time getting a better idea of what I needed...learning to drink enough water and eat my salt and getting the right dose. And just about the time you think you have it all figured out your needs change and it starts all over! I so appreciate your joining those of us who blog about Addison's hoping to help ourselves and others learn to live well with this chronic disease.

    I am so happy you have chosen to help educate others and spread awareness of Addison's Disease.

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    1. Addisons Disease DailyMay 14, 2012 at 1:07 PM

      Hi! Thank you so much for your encouragement! It can be such a difficult disease to manage. I have to say that finding other Addison's out there on these blogs and reading the day to day stories, has completley changed the way I view this illness. Dr's can read from a text book to tell us how we should or shouldn't feel, but it's just not the same thing as connecting with others who have the condition. I'm so happy to meet you, and glad to share this journey with you!

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  3. LanaMay 22, 2012 at 5:07 PM

    Alicia, your journey to find the right dosing for your body might be a changing experience. There seems to be different times in my life when I need more or less. But, I was low dose as well. I also cannot take Florinef daily because it makes me swell too...like you, I've found that I really need it when the hot weather starts back up or when I'm sweating/doing something that is causing my body to go off balance. One dose often helps me for a few days. I also have potassium wasting...taking Klor Con supplements about once per week now to keep potassium in proper range. But, once the heat in Texas gets going, it's more difficult to keep in range.

    You are doing a beautiful job of staying aware and the bad days will actually be learning days. Life is sweeter for me now...I know you probably have a new set of eyes since your diagnosis as well.

    Lana

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