My Name is Kimberly, and I have Addison's Disease

Yesterday, someone I've known for awhile asked me what my health condition was. I often hear comments like,

"I don't mean to be nosy, but..."
"Do you mind if I ask you...?"
"I don't want to be rude..."

I don't know about other people with health conditions, but I think that's just great. I certainly don't mind people asking, and I don't mind talking about it. I just don't want to bring it up all the time and bore people with it. So when people ask, I know they genuinely care, and I don't feel selfish for talking about it.

Officially, I don't mind you asking! And I don't mind you asking specifics about it. Gracious, in one of the countries I lived they were always asking me about breastfeeding and birth control, so asking about my chronic illness doesn't feel intrusive at all!

I have Addison's Disease. It means my adrenal glands don't work right. The adrenal glands produce cortisol, and extremely important hormone (along with lots of other things, but the cortisol is what affects us most so we'll stick with that) that helps our bodies adapt to change. It helps your body deal with everything from the change in temperature when you walk outside your home, to the change in your emotions when you hit bad traffic, to the change when you're fighting infection, to the stress of a bad argument or losing a loved one.

From what I understand, your body is adapting your cortisol levels every 20 seconds or so. Mine doesn't do that, and it doesn't produce the cortisol I need to live well. In fact, since I've probably had this for over 20 years, it explains why in high school I couldn't play sports (I wasn't just a wimp after all!), why in college I was so exhausted all the time, why in Bangladesh I often got sick, why pregnancy was miserable, and why when I got pneumonia, I almost died.

Now that I've been diagnosed, I have to take hydrocortisone, the pill version of cortisol. It is a steroid that I will be dependent on for the rest of my life.

So I should be fine now, right? Not exactly. You see, I also have hypoglycemia (low blood sugar, which means I have to eat every 3 hours, keep a very strict diet, and have to try to keep a good schedule), asthma, scoliosis, and a cyst on my brain (it is squishing the part that makes melatonin, which makes it hard for me to get to sleep, about half nights I'm up till 1 or 2 or 3 or later--which makes that hypoglycemia schedule hard to keep!).

Having 5 conditions gets complicated. And when something flares up, or I get sick, my body doesn't produce extra cortisol, so I have to take extra hydrocortisone and monitor and regulate it myself. I have to go up 2 to 3 times my regular does to fight sickness. When I had surgery, I was on stress doses, which meant instead of taking 30mg per day, I was on 100 mg 3 times per day!

Being up is great, right? Yes and no. It gives my body the umph it needs to fight sickness, but the synthetic stuff comes with side effects. I get ravenously hungry, my blood sugar changes, I retain water, gain weight, and my face gets very poofy (they officially call it moon face--JFK had Addison's and if you look at his photos later in life, you'll notice his face got rounder or poofier). The biggest disadvantage is that the longer you've been up on your dose, the more your body gets addicted to it and doesn't want to go down. So you have to go down slowly and suffer drug withdrawals symptoms.

See the swelling around the eyes?

So deciding to go up gets difficult. For example...

Today. Several months ago I had to go up because of an infection. I was up several weeks. I slowly tapered down to 35 mg per day, but then had to stop because my schedule was so full I couldn't  go down any more without getting sick again (it compromises your immune system). So I took October and tried to schedule very little so I could do the 2-3 weeks needed for every 2.5 I needed to go down. I did the first 2.5, but my kids have been coming home with stuffy noses. The past 3 mornings I've woken up feeling slight symptoms of getting a cold.

Not a big deal? Yes, a big deal. If I let it go, it becomes a real sickness, I have to go up until I get better, then there's the whole tapering down again thing and I've lost the gain I got these past 3 miserable weeks.

But not letting it go means going up now for a day or two and trying to shut it down before a sickness starts. I decided to do that. So I'm taking over 70 mg today in the hope that it will give my body the resources needed to get rid of the coming sickness, and then I can go right back to my lower dose tomorrow.

It may work. May not (kind of depends on my kids' noses too). That's the gamble. It's a gamble I live with all the time. I spend a lot of time thinking about my illness, because the choices I make all day long affect my different conditions for good or bad. What I eat affects my sugar, my level of activity affects my adrenals and my sugar, the weather affects my asthma, how much I lift affects my scoliosis, and symptoms can be any one of the several conditions--I have to figure out which thing is affecting me and what to do about.

Sometimes I get it right. Sometimes I don't. I hope today's decision will turn on to be one of those right ones.

All that to say, I think about my chronic condition all day long. It's my job to try to be as stable as possible. Not being stable is bad for everybody, and I can't be who God wants me to be.

So you asking me about it doesn't bring it up and make me sad. It's already "up" in my mind anyway, and sometimes it's a relief to get to talk about it! So, thanks for asking. =)

How about you? What do you struggle with? Have you ever tried to explain it concisely? (This was my concise attempt--I don't think I succeeded in the concise department!)


  1. HI Kimberly,
    My heart goes out to you re: the steroids. I have severe asthma and border on being steroid dependent for that. Once I get on them I have a terrible time getting off...my breathing tends to quickly rely on them ...I often take 60 mgs a day and in the hospital have IV solude medrol a super strength steroid...I could write a book about the damage these drugs have done to my body. And that isn't even my primary diagnosis. I have an autoimmune disease that affects my body every which way. People who know me do not understand that I have 2 or 3 diseases...To them it looks like hundreds. LOL. I think they think I'm the world's biggest hypochondriac. Maybe I should take the bull by the horns and blog about it like you have...just for the record.

  2. Oh my word! I've only had to do the steroid shot for asthma once or twice. I'm so sorry you've had to do such high doses and deal with all the issues that come with that. What is your autoimmune disease? (If you don't mind me asking... =)) If you end up blogging about it, do let me know--or better yet, post the link on a comment here so other people can go to it too!
    And for the record, I don't think you're a hypocondriac, so that's one person at least! =)
    Grace and Peace to you today,

  3. This comment is by Phyllis Freeman, who couldn't get the number thingies to work. =) Thank you, Phyllis, for your insight and your testimony through long-term suffering!

    "Can I say something? Oh, well, I will anyway since it's on my mind. Thanks, Kim for the explanation of your illness. I do like to know the particulars because it helps me understand the person. And for the record, I want to say something to those who might say to you, "If you had enough faith, you wouldn't be sick." Those are the folks who don't have a lingering illness. My husband has multiple illnesses. It began with his back surgeries and multiplied from there. We believe in God's healing power. Yet Bill remains ill. So after about 6 years, we decided to let God be God. He has molded and shaped us spiritually through difficulties. We are closer to him than we might have been otherwise. I told a person struggling with severe arthritis, "Pat, you and Bill have more faith than it takes to be healed. You have faith to serve God in your suffering." That's a huge amount of faith. Blessings on you as you continue His work."

  4. Kimberly,
    First I want to thank you for being so upfront with what you are facing. It takes immense courage to do so and still present such an amazing outlook on life. My son Philip died in 2009 from an undiagnosed case of Addison's disease. No one knew he had it because the symptoms did not present themselves as obvious.
    Now, 3 years later, I'm seeking to change all that. I've started a foundation in Philip's name and have partnered with Duke University's Children's Hospital to bring a change to all of this.
    As you commented, it takes faith to struggle through in spite of it all.
    While I suffer from RA and hypothyroidism, this isn't about me. It's about the many, like yourself, who live with this everyday that has become a higher calling for me. With God's blessing, it will become a lasting legacy for those who come beyond my time.
    I am sure you are quite busy as an author, however, if you do have free time in your schedule, I'd love to chat more and share our commonalities.

    God Bless.

    All the best,
    Eric Hart

    4Philip dot Org

  5. Dear Mr. Hart,
    I am so, so sorry about your son. Addison's is such a rare disease, and just about anybody I've read about spent at least 10-15 years searching for a diagnosis. Doctor's did not even consider it with me for years because, like your son, my symptoms did not fit the book exactly. Finally I went to a pituitary specialist at Emory (after an endocronologist at Emory and the Cleveland Clinic and plenty other places said I didn't have it) and got the tests I needed done to finally be diagnosed. You must miss him so much.
    I just looked up your website. It is beautiful. I live in Lenoir, just up the road from Hickory, where you said Philip grew up. If you don't mind me asking, how did you discover that that is what he had? Did he have a lot of symptoms? I know mine started in childhood, but were so unrelated we never put it all together into one problem.
    I am contracted for a series of books on chronic health problems, and one of those books is planned to be just on Addison's. There are so few resources out there, and I'm glad to know about yours now. I'm sure I will be contacting you as a resource when I work on the book.
    My sister had her thyroid taken out last year due to cancer so she is on thyroid meds and would empathize with your illness. I would like to hear more about your experiences and what motivated you to start the 4Philip program. It's a wonderful thing. Thank you for what you are doing to spread awareness.

    1. Dear Kimberly,

      Thank you for your compassion. Unfortunately, Philip's diagnosis was not until after he had died. His symptoms were not significant enough for doctors to realize what was going on and none of us in his family even knew what Addison's was until after the fact. It is this lack of proper knowledge that is my prime motivator to raise awareness and push for a cure.

      I know where Lenoir is as I've been there many times. I lived in Hickory for many years before moving east.
      I would be more than happy to speak with you on this.
      You can contact me at the number listed on the Contact page of our site.

      All the best,


  6. I'm so sorry for your loss. It's a credit that you are using it to do something good. Addison's is such a rare condition; it would be very good for more people to know about it. Most people I talk with have never heard of it, or if they had, they just know that JFK had it.
    Blessing to you and your efforts!

  7. Dear Eric,
    I also am very sorry for your loss. Sadly, we nearly lost our 21 year old daughter to Addison's Disease. Her story of misdiagnosis sounds more like a fiction than something that could possibly really happen. I will contact your website for Phillip, so that we may contribute our experience, the journey and all that we are learning. We really must help bring awareness to those in need of managing Addison's. Our dear Katie is struggling to finish college and at times doubting her ability to count on her own body.

    Brenda Berry (mother)
    714 334-1202

  8. Dear Kimberly: I commend you for your openesss. I come here from the TWV Facebook page. I have several conditions with which I deal,Osteopanea, PMR, Fibromyalgia,and IBS. The IBS is related to the Fibro. I have had trouble with joints and muscles the better part of my life but, like you and the others, my tests results were always inconclusive. At least twice in my adult life I have been tested for Lupus. About five years ago, I had to give up a job that I liked because I my muscles were so inflamed that my legs bothered me when I walked. Later that same year, I was seeing three doctors, my primary care doctor, a neurologist, and a rheumatolgist. With medication and getting the rest I need, I am able to only have to see my primary care doctor. I was on prednisone wean for about 15 months. Before that, I had two medpacks of it to get me through until I could get into the rheumatologist.

  9. Kimberly: God was in the plan for you to get your little girl into preschool. I try to get 7 -8 hours sleep a night. I have had times when I don't. I am caffiene sensitive, in addition to my other conditions. Sometimes, I have to take something for pain but I don't really like to. God will bless you and your family for your efforts.

  10. Thank you for coming over to visit the blog, and for your comments. It's so difficult when they can't figure out what's wrong, isn't it? They looked into lupus for me several times too. I can't do any caffeine at all and am not supposed to do sugar either. Sleep is just one of those things that is iffy when I'm on the steroids, but God is good! He gets us through one day at a time!
    I hope your day today is full of peace and joy. Thanks for your encouragement!

  11. Kimberley, I totally get it--get you! I was one of those Super-Mom wanna be's too. My husband put his foot down and enrolled our three year old in preschool. It was the best thing for us all. I had undiagnosed MS. Kept going to doctors until I got tired of them taking my blood, taking my money and patting me on the head saying I was just fine. I could see them being condescending in their thoughts. Then in 1995 I was hit by a massive MS attack.

    I was a teacher and that retired me. I had a horrible time with self-image and sense of worth and belonging. The Lord had me write all that struggle--I am shopping for a publisher for that manuscript.

    I am grateful to the Lord that I don't have to take meds for the MS. I'm not in pain, just have no energy, can't walk well or see well or drive anymore. It's hard to promote your work when you can't get yourself to speaking engagements so I don't anymore. Being stuck at home gets old so I'm grateful too for the internet. God is good. He does provide and one day we will see why He did what He did and we will agree that His choice was the right one. I do know that my new assignment, to make it plain, is fulfilling and this is what He wants me doing. You seem to be working toward that same conclusion.

    Steroids are wonderful and they are awful at the same time. May the Lord lift you up. May He be your stability and bless you and your family in all the ways you need.

    Carol Brown, author and John 316 member

    1. Carol, just out of interest did you have below 500 b12 readings? How was your folate. MS and B12 deficiency symptoms are similar and b12 deficiency also causes neurological symptoms and damage to the myelin. Just look into it. Even if it isn't the b12 injections can give you more energy. God bless and keep you x Dawn

  12. Thanks, Carol, for the encouragement. I have a dear friend who also lives with MS and she also writes. If you'd like to connect with her, her blog is www.capacitycorner.blogspot.com. You can let her know I sent you her way. =)

    Yes, I, too, am so thankful for the internet. It's a wonderful time in history for us, because we can be "stuck" at home and still have a worldwide ministry through our computers. I'm so grateful for that! God really is good.

    I hope your day is filled with peace and joy!
    Thanks again for taking the time to send a blessing my way,

  13. P.S. Carol, if you'd like, I'm part of a FB group for the "sick and tired." We encourage each other and give a place to vent without feeling like we're complaining! It's here is you want to check it out:

  14. Hi, Kim. This is Tom from INSIGHT. I just subscribed to your blog today. I thought I'd check out some of your past posts and found a few about your health. I had no idea you were dealing with these issues. I just said a prayer for you. I look forward to reading your blogs and staying in touch after I depart from my duties at INSIGHT. Blessings!

    1. Hi Tom! I was taking down Christmas cards the other day and was so blessed by the one you all personally signed from Insight. What a nice thing to do! Thanks for coming over to the blog and for your prayers! God bless you as you move on to the next thing the Lord has for you!

  15. Hi Kimberly! Just stumbled upon your blog via Pinterest with an Addisons Disease search. I myself have just been diagnosed a week ago and the only reason I didn't have to search for a diagnosis is because I nearly died from it. Here I was going to the ER for what I thought was severe stomach flu and it turns out my kidneys were shutting down. Very scary and the doctors say if my husband didn't get me in when he did I may not had made it. So glad to have found your blog and your books!! Its wonderful to find someone who understands how scary it is. Now that I'm out of the hospital people seem to think everything should be fine. I'm up walking and talking right? They don't seem to understand that a basic little generic medicine they take for a chest cold is the difference between life and death for me. Thanks for helping it feel a little more understandable! Can't wait to read the rest of your blog! So inspirational!

    1. I am so glad you're here, though not glad for why! So sorry for all you went through getting diagnosed. From what I understand, most people with Addison's go to different doctors for over 10 years before someone finally figuring out what they have, many enduring a crisis like yours that is life-threatening. Bravo to your husband for getting you to the hospital on time. And now you have to live with everything changing and people not understanding, and you trying to understand yourself. I wish you weren't in this new club of unhealthiness, but you're not alone! I hope you'll subscribe to this blog so you can stay in touch. Please feel free to ask questions as you're figuring all this out. I hope the doctor already told you, but sometimes they don't, you'll want to get a medical alert bracelet (the kind you can put a paper in--they're cheapest on ebay) and put in that if you're unresponsive you need a stress dose of 100 mg of hydrocortisone given to you via shot. You should also ask your doctor for a prescription to get several of those for you to carry around with you (if you get in a fender-bender, you need a shot, and most EMTs don't have the meds and wouldn't want to give it to you anyway before they have doctor permission, so you having it on hand might save your life). One more thing, feel free to pass this blog post along to your friends and family, to give them a better understanding of what Addison's actually is and how your life is different now.
      Let me know if there's any way I can help. You can do this!

  16. Hi there

    I also have Addison's Disease and have found the Addison's Disease Self Help Group (ADSHG) www.addisons.org.uk an invaluable resource for learning about the disease, as well as how to look after yourself and of course talk to others who completely understand!

    Although it is UK based, because it has such a strong respected medical vein running through it, it is used internationally by those with Addison's Disease.

    Seeing as you are so 'on the ball' with managing your Addison's, I thought some of the medical research papers and information in general might interest you.

    Take care,


    1. Thanks, Pippa, for stopping by. I'm glad you're here! How long have you had Addison's? I'm glad you mentioned the UK group here. In all my research, they are just about the only really good source of information out there. I love their resources, especially those little labels you can get to put on every clipboard if you're hospitalized! My Sick & Tired series is supposed to have 6 books, but I'm thinking about adding a 7th and making it entirely about Addison's since there is so little out there. If I do, I'll be hitting that website often, and I may be contacting you too!

  17. you should Google " dusty addisons " her site is amazing with people helping each other who have addisons to get medicines spot on and still run and compete in sports!!..

    i have lie cortisol not sure yet uf adrenal insufficiency secondary rather thand addisons x

  18. Lack of adrenal hormones have been a problem for me all my life and caused late development of womanhood. I have been on hormone therapy since early pre teens for Addison/s. Now I have bouts of hypoglycemia an my weight goes up and down like a yo yo.

  19. Hi Kimberly. I am sorry to hear about your illness and what you have to deal with. I have quite a few illnesses myself, Lupus, Fibromyalgia, Diabetes, Hypothyroidism, Asthma and a few others. It is frustrating to have to deal and if it wasn't for a wonderful husband and my relationship with the Lord, I would have given up long ago. I am encouraged by your testimony and that even though you have had to slow down, you still keep going. My husband and I are getting involved with a Domestic Minor Sex-Traffickking group in Baltimore, MD. I don't have a lot of energy, but I believe if I just lay down and give up, I will die without doing what God has put me here for. I have a passion to work with these young girls (and boys) who have been traffickked and hope that I can be a instrument that God uses to do this. Thank you for your story. I will be praying that God will heal you and bless you greatly!

  20. Hello Kimberly. My 19 year old son was diagnosed with Addison's in April of 2015. So we have not been dealing with this for years , though it seems like it. He started out as feeling dizzy, unsteady on his feet and holding onto furniture, throwing up and feeling the need to pass out. It was night time and winter, he had been to school and shoveled snow afterward. I thought he was overly tired, over worked, like shoveling snow can do. About a week later it happened again and made a doctors apt. as soon as possible. He also has one kidney. He lost one when he was 9. I thought it was his kidney. His calcium, vitamin A and D was very, very low. He weighed 115 pounds. Where it was winter and I don't ever see him even without a shirt I was shocked at how he looked. They put him on meds. Sent him to an endocrinologist. He found the Addison's. So more medication. They told me he would feel better, gain weight. He would be ok and not to worry. His sulfate has rose to high levels and that means kidney problems. They put him on a low sulfate diet, took meds he needs but they have sulfate in them. His hair is falling out, no weight gain. Put him on calcium carbonate, so he gets the calcium he needs and the carbonate is a binder for the sulfate to help his body excrete through urine the extra sulfate. So weak and tired all the time. And he has scoliosis. I have watched my son go from healthy to nothing but bones and not a thing can I do to help him. I hate this disease. I hate everything about it and I don't wish it on anyone. He has mood swings and he can get pretty hateful at times. I know he does not mean it. He is going through so much. Is there anything I can do about the mood swings and anger? thank you for sharing your story.

    1. I am so sorry for what you are going through! It is so hard when your child is the one suffering and you can't fix it. I have to take calcium, magnesium, and potassium supplements every day. I have scoliosis too. So many of these things go together, unfortunately. If you don't mind sharing, what dosage of steroid did they put him on, and is it hydrocortisone or prednisone? If it's prednisone, I'd recommend asking them about switching to oral hydrocortisone. It is closer to what the body naturally produces and might help with the mood swings, as prednisone can cause all sorts of nasty side effects both physically and emotionally. To be honest, reading what you wrote, it seems like they don't have him on a high enough steroid dose so he's still struggling trying to survive and function without enough cortisol. I take 30 mg per day. Some people can function on 10 or 20 but I've found I need 30 and that's to maintain with limitations. Having the kidney problem I'm sure exacerbates the problem, as his body is probably under a constant state of stress, which makes the adrenal problem worse. He would probably need a higher steroid dose than the average person with Addison's because of the kidney problem, but of course I'm no doctor. There are a couple of groups on Facebook for people with Addison's that I have found more helpful than just about any doctor out there for real information, because they are full of people actually living with this disease. You might want to get on and share his situation and I know you'll get a lot of feedback with something in there that might help. Here's a link to one of them: https://www.facebook.com/groups/LivingWithAddisonsDisease/


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