A Letter to the Newly Diagnosed with Adrenal Insuffiency
First of all, welcome to the family. Although I am not sure of the exact path you took to become part of the “broken adrenal glands club” (also known as Adrenal Insufficiency), I would like to extend to you the warmest welcome.
As someone who has been on this journey for a little bit, I would like to share five things that I wish someone had told me immediately following my diagnosis.
1. It is ok to be scared.
Original doctor’s notes as he explained the adrenal glands to my mom and I during my initial diagnosis of Adrenal Insufficiency. May 2005.
You have just been diagnosed with a rare disease that has no cure. The treatment also requires quite a deal of self management. It is ok to be scared. It is ok to feel completely overwhelmed. It is not ok to panic. As hard as it may sound, try to view this diagnosis as a gift. With a name, there is knowledge. With knowledge, there is treatment. With treatment, there is life. Focus on the fact that you are alive.
2. You will probably gain weight.
My cat standing on six pairs of pants that no longer fit me due to weight gain.
Please do not ever try to manipulate your medicine so that you can drop a few pounds. Please understand that your body was killing itself before you started your treatment. This weight gain is good. Yes, you will now need to focus more on a healthy life-style. But please don’t ever view the steroids you take as the enemy. These steroids give you life. A larger number on the scale is well worth the price of remaining alive.
3. Your social group will change.
Chillin’ with Big Tex on my birthday in 2014.
Yes, you will probably lose “friends.” Yes, it will appear as if your social circle is drastically reduced. It is ok to let them go. Those that stick through your side during this journey are worth so much more. It is much better to have a smaller group that is unbelievably understanding and loyal than a larger group that abandons you during your time of greatest need.
4. You are not a failure.
Adrenal Crisis triggered by food poisoning. August 2014.
One of the first things your doctor might have told you is that it is still possible to live a “normal life,” whatever that means. Well, flares still happen and sometimes they are completely out of your control. Forgive yourself. Every hospital visit, every ER run, every sickness, and every stress dose provides an opportunity for you to learn and adapt so that you will be better prepared for the next adventure.
5. You are not alone.
An Adrenal Insufficiency meet up from Jan 2014.
Yes, you have just been diagnosed with a rare disease that even the experts do not fully understand. However, that does not mean that you are alone in this journey. Reach out to others who have walked a similar path. Lean on us for support. Do not further isolate yourself.
And again, welcome to the family. Let us continue to work together so that we can remain Clearly Alive.
My mom and I at my Decade of Diagnosis celebration in 2015.
This post originally appeared on The Mighty.
Kelli Lester Lash
I was just diagnosed with secondary adrenal insufficiency and I love your blog and how positive you are! Thank you.
Amber Nicole
Welcome to the Family 🙂
~ Amber
Vicki S Young
Thank you for this. I used to be a model and a ballet dancer. I am terrified of gaining weight. I have lots of ortho injuries and the weight has already made the pain in my knees, past broken bones and rod in my foot hurt even more. How do I stop the weight gain?
admin
Hi Vicki,
I so wish that there was an easy answer to this, but unfortunately there isn’t. There are some tricks, such as trying to make your treatment match as close to the circadian rhythm as possible ( https://clearlyaliveart.com/theoretical-steroid-curve-plotter/ ) and being extremely mindful about eating healthy, but those are just suggestions and guidelines.
Here is another one of my posts that deals specifically with weight gain: https://clearlyaliveart.com/2015/07/the-work-pants/
~ Amber
Kathy Emerton
I was recently diagnosed in June 2018 after a trip to the E.R. and a week in the hospital. I’m grateful to the doctors who saved my life. Too many doctors over a 10 yr span told me that there was nothing wrong with me. Now I have a name and a start. I found this blog and I’m glad to know that I’m not the only one going through this. I’m on the generic hydrocortisone and have started noticing things a month after the hospital visit. I’m scared especially after being told that “I may not survive the next time”. I’m losing weight which I find surprising considering I’m on steroids. I always thought weight gain came with it.
admin
Hi Kathy,
Welcome to the family!
As for your generic, please double check and make sure that it’s not this one: https://clearlyaliveart.com/2013/11/generic-hydrocortisone/
I would to also encourage you with the fact that there are several alternative forms of steroids out there, so if you find yourself not responding ideally to generic hydrocortisone ask about prednisone, dexamethasone, Rayos, or even a combination of any of the above. Some of us also respond better to solu-cortef injections throughout the day. I personally am on a Cortisol pump.
Keep working with your medical providers to find something that works best for YOU. This disease is rarely textbook.
Let’s keep you Clearly Alive 🙂
~ Amber
Kathy
Amber,
I just wanted to touch base with you. It’s been 1 1/2yrs since my dx and my first post here. I was on the generic hydrocortisone and on the back of the pill was a V. I made many trips to the several different E.R’s for different symptoms. Some of those visits were an absolute nightmare. Recently I noticed that the symptoms that had sent me to the hospital have all but stopped. My Endo Nurse recently changed my prescription of HC to 5mg and 10mg and with that change, the generic HC I now take is by Greenstone and I’m feeling much better. I’m also in a wonderfully, supportive women’s Adrenal group on FB. While I still have moments where I wonder if I’m in crisis, it’s not as often. I’m thankful for every day that I’m alive and I embrace that God has given me a second chance to live this life.
Amber Nicole
Oh thank you for the update! It fills my heart with so much joy! I am thankful that you found your tribe of support, that you are responding better to Greenstone, and that you are Clearly Alive!
Kaleigh
Amber your blog is absolutely inspiring!! I was diagnosed with Addison’s Disease just last month (July 2018). Its been a very hard change for myself and for my family. I know it will take time to get everything back to my “new normal”, but finding your blog has been the biggest help for me! Knowing that I’m not alone and what I’m feeling is how others with addisons feel as well. Thank you for choosing to write this blog and help so many of us! You’re wonderful!
admin
Hi Kaleigh,
Thank you so much! Welcome to the family and may you join with us in remaining Clearly Alive.
~ Amber
Michelle
Thanks so much for your contribution to helping others with Addison’s disease. I read your blog about generic forms of hydrocortisone and heard just recently that greenstone might have changed its ingredients. How do I find out if this is true and what the ingredients are currently ( January 2020). Thanks so much for your assistance.
Amber Nicole
Hi Michelle,
I’m so thankful you find my blog helpful! May it empower you to remain Clearly Alive!
As for your question for Greenstone ingredients, are the pills still labeled as Cortef? If yes, then you should be good. As for checking the ingredients, I use this website: https://www.drugs.com/imprints/cortef-5-16.html
~ Amber
Joanna
I would like to be added to your mailing list please.
Elizabeth
Thank you for sharing your journey.