Monday, October 1, 2018

My Story

I've posted so many stories and poems over the years on here from my childhood memories that I know you all are shocked to see anything else but I've felt compelled to write and post this for a while and try to explain something that I'd never thought in a million years I'd ever be writing about. This one is not my norm and it's taken a lot out of me to do it and hope you can bare with me and I thank you all in advance for reading it.

I've always heard about Addison's Disease being a Rare disease and very few people would ever have it. I've read about how famous people like President Kennedy had it and that's why he always had that darkness or orange colored skin color but in my experience with it and following so many group pages on Facebook I've come to find out it's more common than I thought.

Like other diseases Addison's can be quite complicated and hard to explain to someone that doesn't have it but I'd like to try to explain it as much as possible since I have become one of its victims.

Many that have followed me over the past several years knows how I've posted updates about my health issues and how hard it's been for me to do the things I once did and live the life I once knew. I've told you all about how I lost my Thyroid in 2014 due to another Auto Immune disease called Hashimoto's. You've followed my journey on how hard it's been to get optimal on any thyroid meds, and how many Endocrinoligists I've seen. The thyroid is a very important gland that keeps our body going and sends out signals to other glands in our body to produce the hormones they have to produce in order to keep every thing in sync. The thyroid is sometimes called the central gear to our body. Some people can have theirs removed due to other causes and live a some what normal life without it but others like myself that has to still deal with Hashimoto's and other auto immune diseases it becomes so hard to do. When this happens it can and does cause the other glands in our body to get out of sync and go down as well. And Hashimoto's being an auto immune disease stays with the body and when we get one auto immune disease they all like to jump in and stir the pot like Auto Immune related adrenal disease.

There's two little glands that sits on top of each kidney called the Adrenal Glands. These two glands produce eight hormones and are all vital to our bodies but one hormone is even more so important and that's called Cortisol which is our stress hormone. We make cortisol in our sleep at night and that gives us the full blown energy we need to get up in the mornings and feel refreshed and ready to take on the world . Around 3pm each evening our cortisol tends to wear down and by bedtime that's why we're tired and ready for bed. If we get in any stressful situation we have the cortisol as a bodily defense. I've read that 80% of people have some kind of adrenal gland insufficency and doesn't even know it till it's to late.

In an Addison Patient's body the adrenal glands have either stopped producing these hormones and any cortisol at all or producing very little and not enough to live on. Therefore the only treatment available is Steroids for life. Primary Addison's means the adrenal glands does not produce at all and Secondary Addison's is where they're still producing small amounts of cortisol but not enough. With either one the only treatment is steroids.

I was diagnosed with Secondary Addison's back in July of this year after a couple of very important tests were run. I knew my adrenal glands were down since I've been even more sick for the past couple of years. The only places I can go is to the doctors, labs, etc and I'm in a wheelchair then. I have a hard time taking care of my needs and therefore have a Home health Aid coming in four hours a day to help me with baths, etc. and help my husband with light housework chores. I now take steroids on a daily basis and like any other Addison's patient I have to find my own dose according to low cortisol symptoms. Some days I take more than others and still feel it's not enough. We can only go on our symptoms of low cortisol and we quickly learn those and how to dose. Mine is extreme weakness, jello type feeling in my arms and legs, anxiety, headaches, brain fog which means can't remember or focus, low or high BP and the list goes on and on.

Addison's patients are faced with many things and many questions. Every day or night we ask ourselves do I need to take more steroids, is my BP to low, is my sodium to low (due to salt cravings) is my potassium to low, why is my BP so high and should I go to the ER. With Addison's the electrolytes can get unbalanced or fall fast and we have to stay quite salty. By this I mean drink lots of salt water or take salt pills and we also have to eat potassium filled foods as well.

Addison Patients are usually given an emergency kit that consists of an emergency injection that contains 100mg of Hydrocortisone to inject themselves when they start to go into a crisis and are told to get to the ER fast as possible for more injections and a possible four to five day hospital stay with more Hydrocortisone IV's till the cortisol levels rises above the danger level. A crisis consists of nausea, diarrhea, vomiting, low blood pressure ( it can fall very fast), incoherent, slurring of words, etc. And if not immediate treatment is given with these emergency steroids the organs start shutting down including the brain and it can mean death.

A crisis can be brought on just by a tiny, bit of stress, sickness of any type, underlying issues like a sinus infection, UTI etc. Steroids tend to weaken the immune system more over time and it's hard for the body to fight off anything that comes along . I'll not even go into the many side effects that come with these steroids as some probably already knows that's taken them any length of time. I now wear a Medic Alert Bracelet that can tell emergency personel that I have Addison's and steroid dependent and to give emergency steroids if the occasion rises.

I now take one day at a time just like we all have to do and I put it in God's hands a long time ago. We've all got our own battles to fight and where would we be without him to help us. It's like a baby learning to walk, we can only take one step at a time. I try not to worry about tomorrow because we're not promised tomorrow and I can't afford to stress over things that's beyond my control. Stress is our enemy and to an Addison Patient it can be a killer.

My days are spent in the recliner and some days are worse than others that land me in the bed in a quiet, isolated place where it's dark. Because with Addison's light can make the eyes blurry or not be able to see at all. If I try and watch TV to long or stay on the computer I see blue lights in front of my eyes. That's a sign of low cortisol.

Yes, I miss the life I once knew and I look around at all the things I'd like to still do and it breaks my heart but I have to get used to the new norm. The one thing that hurts me the most is seeing the hurt in my husband's eyes and wanting to do more to make it go away for me. I told him a long time ago it wasn't fair to him but he's never once complained and been by my side through it all. He's never missed a doctor appointment with me and we've cried together, prayed together and come October we've been married 48 years. I tell him every day that he's my biggest Blessing and my best friend. God knows who to put in our lives. He sure has Blessed me in so many ways and I can never thank him enough for what he's done for me and given me.

I just wanted you all to know a little about me since I haven't posted an update lately and I know so many have been praying for me and I'm so grateful for each prayer. My writing has come to a halt for now. I can't focus long enough and get confused at times (brain fog) and forget what I'm trying to do or say. I assume most of you have already recognized some of the posts I've been sharing are older ones. I had planned on doing another book and have some that I wrote back when I was able of short stories and poems but that is not possible now nor will it be anytime soon. I've been trying to write this post for a long time and thought to my soul I'd never get it finished. But as most of you know so well I can get long winded and don't know when to stop.

This December my blog will celebrate it's 8th anniversary and I've enjoyed every minute of it and the many friends I've met on here and each one of you are very dear to my heart. I will continue to post as I'm able and try to keep up as much as possible because I miss your posts so much. Thank you all for your visits to my Blog and your sweet comments. If you don't hear from me from time to time you'll know the reason and God bless you all and thanks for your friendship and your prayers.

© Susie Swanson, 2018


  1. Oh dearest Susie, my heart breaks for you. I'm just without words to express my heartache. We don't know why these things have to happen, but perhaps through your suffering some soul may be brought closer to the Lord. You've always been such a wonderful witness of your great faith in God. I'm going to continue praying for you, and hope you will feel like writing a bit now and then. Just rest and know we all love you.
    Sincerely, Charlotte

  2. Susie, You know that my love and prayers are with you and will continue to be with you throughout your journey.... All of us have 'stuff' we go through --but some of my very best friends who are dealing with serious health issues are my role-models --since they/you are SO strong. God Bless You.


  3. Susie, I always enjoy coming to your blog and visiting. Your stories have taken me down the same back roads you walked as a child. The stories of your hard working family., make me think of my mother's up bringing. She had a tough young life, as your parents did. The pictures, tales, and even characters , and mostly you have made me fall in love. I count you as a dear friend Susie. You will always be in my thoughts and prayers. I hope you can write your poems and stories once more . Blessings to you and your wonderful husband. Love you so much,xoxo, Susie

  4. Thank you for sharing your story, dear Susie. What a blessing your husband has been. The symptoms are awful, and I have been praying for you during this difficult time in your life. Stress makes everything worse, so please take care of yourself, get the rest you need, and surround yourself with lovely things if you can. I'm thinking of you, Susie, and sending a whole lot of love your way.


  5. Thinking of you, Susie and keeping you in my prayers. Thank you for sharing with us what all you are having to deal with. I know that couldn't have been easy to write that. Sending love your way. Take care of yourself and may God bless you.

  6. I appreciate you taking time to explain the health issues you are facing. I am sorry that you are having a very difficult time. I will keep you in my prayers. Don't feel that you have to comment when you don't feel well, but I would love to hear more of your writings from the past when you are able to post them. May God give you peace and comfort. Hugs, Karen

  7. Susie, I was crying as I read this last night. I couldn't comment then, not sure I can now. I am so sorry. So many things in this world just don't seem right. But I have to trust and I know you do, too, that our good God still loves and cares for us, even through the really hard times. I am praying for you, my friend, and believing for very best for you. Lots of love from me to you.

  8. Susie, My sister karen shared with me your post and I want to say that I will remember you in my heart and prayers. You and I followed each other many years ago, but I have not blogged in a long while. I am sorry for all that you are enduring. Your husband is such a blessing. Praying for you both. With love, Mildred

  9. God bless you ! I've told you before if we lived close we'd be the best of friends !! I have enjoyed your Blog so much!! Thank you for trying to educate others about Addison's even in your own struggles.. I'm so thankful our paths crossed! Sending you hugs and prayers!!
    I feel every word of all your posts and this one is no different.. Love you Susie! Love Patti

  10. Susie,
    I'm so sorry to hear about your health issues. I just didn't know you were having such a hard time. This has been a very informative posting. I learned a lot I didn't know about this illness. I'm keeping your in my thoughts and prayers and hope you will get better.