Friday, August 7, 2020

Update



I'm back Folks and it has been awhile. I guess you all have been wondering if I abandoned everyone and my Blog. I didn't intend on staying away so long but I've had a very hard go of it since my diagnosis two years ago of Addison's Disease.

I couldn't tell you the whole story of what's happened because it would take to long and I'm not able to be on here long at a time. But I'm coping and learning how to live with my new norm .

Not many people know what this disease is, not even the doctors know much about it. The Endocrinoligists get a couple of patients in their whole career and that's about it. They only know how to hand out the steroids and tell you that you have to take them the rest of your life. They fail to tell you that most of these steroids only last 4 to 6 hours in the body and you're on your own the rest of the day. Steroids are our life saving meds and we have to be on alert and listen to our body or else. I've learned to split my daily dosage up into 5 doses daily. These steroids replace what the adrenals fail to produce of the life saving hormone called cortisol. It's our stress hormone among other things. If we get any type of stress on our bodies such as sickness, mental, emotional, etc. we have to updose our daily dosage to get by or go into an adrenal crisis which means if we can't get enough steroids in our bodies to buy us a little time to get to the ER our organs will start shutting down and we are a goner.

I've had a few close calls in the last couple of years but managed to get enough steroids in me till I could get to the ER. We live in a small area and have two hospitals but I only go to the same one every time. One would think as many times as I've been and told them my issues they would have it all in the computer and I wouldn't have to take my paper work in and my card to show them I need immediate medical attention. I'm a member of the NADF (National Adrenal Disease Foundation) and they sent me a lot of paperwork to take with me each time but the Doctors still have to Goggle it. But that's enough about me for now.

We've also had other sickness in my family as well. We almost lost my oldest brother back the last of May and into June. He was diagnosed last year with colon cancer and they were able to take it out and he was put in with the Cancer Center Doctors. This past spring his cancer numbers came back very high and he was sent for MRI'S and Scans. They found it in his liver and he went through three of the strongest Chemo's the human body can with stand trying to shrink it enough for the cancer surgeon to go in and take part of his liver out.

They did the cancer surgery on May 28th and they found it not only in his liver but in his gallbladder and lymp nodes too. They said they got it all but that night after the surgery he had a heart attack and they had to work fast to save him. They kept him on a ventilator for almost 7 days till he could get a little stronger and they went in and did Heart Bypass on him. They had to replace the main valve to his heart also it was damaged so bad. He went through all of the cancer treatments and surgery with no knowledge from him or the doctors knowing anything about how bad his heart really was. The heart doctor told him he wouldn't have made it much longer even if he was at home without a major heart attack. Then on top of everything else he developed an infection where they had to replace his main valve to his heart and had to be on IV Antibiotics for six weeks. The nurses taught his wife how to administer the antibiotics into his port. She said, she and God did it all. We just never know what we can do when we're up against a wall.

The nurses have been coming into his home and drawing blood every week and sending it to be checked out. But Praise God he is now on the mend. The nurses are still coming in but he's been released from the Rehab.

I wanted to tell you all this to show how God really does work when we need him the most and my brother says it was not his time to go yet. Amen to that and we all give God the Glory and Praise for what he has done and still doing in our lives.

Let's just say I had to take a lot of my life saving meds to get by

I'm sorry for the long post but wanted to let you all know I'll try to visit each one when and as I'm able and I have missed everyone so much and all of your posts. Thank you all so much for not giving up on me. May God Bless you all !!

~Susie~


 

6 comments:

  1. Oh, Susie, I am so glad to see you again on here! I had no idea Addison's was such a complicated disease. Thank God He has walked with you every step of the way!
    So sorry your brother and his wife have had to go through all that. But God is still so good, even in the midst of trouble. I'll add him to my prayer list.
    Love you, my friend!

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  2. Susie-It is so good to see a post from you but I am so sorry to hear about all the illness in your life--not only yours but your brother's life, as well. You both sound like fighters and sometimes that is all we have in us--to keep fighting against the burdens we have been given to carry. Much love and healing prayers to you (and your brother)- so Diana

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  3. Susie, it is good to see you back here again. You have been through so much the last couple of years. And I'm so sorry to hear about your brother. He has suffered so much with his illness. I am saying a prayer for you and your brother. You are a dear blog friend to me, Susie, and I hope there are better days ahead for you, and I hope Autumn brings you some joy. : )

    ~Sheri

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  4. Susie,
    It's great to hear from you again. I've really missed your postings. I hope you are doing better. Sounds like you've had a trying time. I hope your brother is doing better. You are in my thoughts and prayers.

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  5. Susie
    Glad to hear from you and happy you are blogging again.
    Blessings,
    Brenda

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    Replies
    1. I wish we had some way of knowing how Susie is doing. I think about her often and I miss her postings. I wish there was someone who can update us all on how she is doing.

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