I'm a stay-at-home with 4 kids (ages 2, 4, 5, & 7). I was told a week ago that I have Addison's and Schmidt's Syndrome. I HATE being on the hydrocortisone. I constantly feel so nervous. My handwriting has even changed because I'm so shaky. My hands and ankles are swollen and I am petrified of the prospect of gaining weight. I needed to lose when I started this.

What is the hope? Is there any surgical option? Is there anything out there to stop the progression? Are there alternatives to the steroids? I am so scared. How likely is it that my kids will end up with this?

Thank you in advance for any advice or encouragement that you can give me.

Peg Z.

Hi Pegz-

First off- try to relax a bit. I know having a chronic problem like this may seem like the end of the world or the end of your normal life but it is far, far, far from it.

I am a mom of 3 (1 girl- 13yrs. and twin boys- 8yrs.) and I am working mostly full time. I was diagnosed 11 years ago in 1992. Once I was on the correct dosages of cortisone- I became mostly my old self again.

You have to keep remembering that the cortisone that you take is simply replacement- just REPLACING what your body would normally make- therefore it is not the same effect as taking steroids over and above what your body normally produces. It won't therefore create the same side effects. Generally anyway. I pretty much stay at my pre-illness weight now. The only time I have those types of side effects are when I have a prolonged period of illness and have to double or triple up my dosages. There is a TERRIFIC group at the following site: http://home.ease.lsoft.com/ then look for the link to addisons.

If you'd like to email me directly let me know. I'd be happy to chat.

Please, don't be scared!! You will be ok.
Paulette

Yep it sux, but there are people who can help. I suggest you got to google and look up "addisons disease aspen". Simply the best place to learn about our disease.

What does Aspen, after the disease title, mean?

And regarding feeling scared, isn't it the same when we're diagnosed with any new disease, until we get used to it? I've been scared to even get diagnosed.

If anyone's elderly and diabetic here, your systolic and diastolic too far apart, diastolic too low, I found out by searching the web, that can be dangerous and there can be a mineral deficiency, magnesium, lost in the urine of some diabetics. OTC supplements are 250 mg, I think, which is 2/3 the daily requirement. Some of it should come from foods, so that's enough.

It's seemed to help me. We also need 750 mg of salt per day. Anyone know how much that is? Half a tsp? I have no idea. I'm no scientist.



[This message has been edited by Eagle (edited 06-11-2003).]

Aspen, I believe, is the name of the women from the website. I have been there but it is overwhelming to me. Does appear to be a great site if you have some time.

Peg - I've had Schmidt's for 18 years now, and believe me, the first year, getting used to taking medication every day, is the most difficult. I had a hard time with that idea, but I did keep up with it, and took the medications every day as I was supposed to.

Once you get past the first year, it gets SO much easier, it's hard to believe. There are very few things I don't do now that I did 18 years ago, and life has actually become easier to enjoy.

Be patient with yourself, keep in touch with your doctor to fine-tune your medication if necessary, and most importantly, remember you've got a long, happy future with ahead with your family