Monday, February 28, 2011

#38 - Suzanna's Question; My Miracle

Suzanna is an adorable blog friend, and we regularly read each other's blogs. Hers is and you can easily find her under my "Followers" reference. Suzanna is creative, interesting and she has Addison's disease. That gives us an instant connection on a deeper level.

Recently, she posted a comment on one of my entries and asked me a question, "What was it like for you when you were first diagnosed?"

I decided to try to answer this question the best way possible. My "after" being diagnosed had so many changing hurdles over an extended period of time, but right now I'll address how life treated me immediately after my diagnosis.

Actually, I had become critically ill because I had been undiagnosed for a very long time. My health had deteriorated to the point of not being able to sit or stand. I could barely lift an arm and could not even feed myself a full meal. I could only eat a few bites, then I would drown in a strange exhaustion that could not be explained. Once hospitalized, for medical tests, I had to be moved from the hospital bed to a gurney and wheeled while lying down to the next spot for testing. I was very, very weak. Breathing had become difficult. In the hospital again, during the Fall of 2001, I coded. The cardiologist assigned to my case was pretty brilliant; he was the first doctor to put all of my symptoms together so he could order the correct tests and that's how I was finally diagnosed.

Dr. Ali had some of these medications administered to my IV line and within thirty minutes, I was able to walk - with the help of a physical therapist. So, right after my diagnosis, one of the most beautiful moments I remember is that walk I made around the nurse's station as the physical therapist held firm to the loop on my back that was attached to the belt around my waist that acted as an aid for the therapist to help steady my walk. But, I felt like breaking out into a run. I felt so strong and alive and almost "normal." It had been so long since I had felt "normal." Perhaps a year had passed with my body slowly weakening; I had been adapting to the increased weakening, without much notice until my body would not cooperate at all any longer. So, this day of being able to walk around was a moment of triumph.

Back in my hospital room, I was able to sit up in bed by myself. My lunch was brought to me and I was able to eat by myself and the food tasted good, and I could swallow and hold the fork steady. Before my diagnosis, eating was exhausting. Later, I discovered that the digestion process itself had been a stress my body could no longer endure, especially since I had no reserves. I was completely depleted. Once the hospital got my AM Cortisol levels back, the doctor told me that he did not know how I managed to stay alive for so long - he said I should've been dead, but perhaps my addiction to V8's had become my life-line...the needed sodium probably pushed my blood pressure up just a tad to sustain my heart and lungs.

I was sent home with three medications: Florinef, Prednisone and Klor Con. Later, my assigned endocrinologist changed the Prednisone to Hydrocortisone because he said it was less harsh and better for a patient needing long-term treatment with steroids. The Klor Con is a potassium supplement, but this area leveled out better as well over time with the other medications. Truthfully, the doctors did not know what to tell me about dosaging. All the doctors appeared a bit frazzled. Finally, my endo pulled out a resource and read it to me...stating 30mg of HC to be the "standard" for daily dosaging. I asked him if that recommended dosaging would be the same whether you were a 260 pound man or a 130 pound woman? He said, "Yes, it's what we've got for now." I realized that I had a major issue in front of me - a disease that had little documentation and an across-the-board "recommendation" that amounted to a little understood disease. The endo suggested that I break my daily dosages into two dosages, but that I would have to simply go by trial and error for dosaging amounts and times. I'd have to figure out what works best for my body. It was confusing. My endo explained the normal process of cortisol release for a body who has working adrenals and this did help me to approach my dosaging with some logic. Early morning, need more...evening approaches, tapering is required so the body can actually get some between, that is the stickler.

Immediately out of the hospital, for a couple of weeks, they initially kept me on at least 60 mg per day of steroids because my body had become very weak and sick from being misdiagnosed for such a long time. However, it turned out that I definitely did not need the "standard" dose of .1mg per day of Florinef. In fact, I experienced dangerous side effects starting with the vessels in my eyes bursting. It hurt terribly and I could barely close my eyelids over the vessels that had burst, it felt like tiny rocks in my eyes. I was informed that my internal pressures were too increased and that the vessels were imploding. Lovely. I took some time to truly consider what this meant as I looked in the mirror at my bloody appearing eyes and knew the seriousness of the situation. So, I cut back on Florinef, drastically. I did not require much Florinef, perhaps because the Klor Con helped to offset that end and I was still drinking V8, mostly out of habit and of fear of quitting.

Today, I take a half pill of Florinef and it seems to be a perfect dosage for my body. I always keep Klor Con on hand, taking maybe a couple per week, more if I am out in the Texas heat. But, I did suffer pretty badly before we finally figured out that it was the Florinef making me feel as if my head were going to explode or pop off. I had one Dr. argue with me about my dosage of Florinef, he was one of those "textbook boys," but my first-hand experience had taught me a better lesson...dosaging often depends on the person and their lifestyle. Every person is unique; Addison's is one of those diseases where you must fine-tune your dosaging with the assistance of your doctor. Turns out, for my situation,  I was right to reduce my dosage and my regular endocrinologist's testing confirmed I was on track. I leveled out and felt incredibly better. The vessels in my eyes no longer were blown up fully and I didn't look as scary! After the Florinef was adjusted, I was on the road to feeling more like myself.

I have never regained the same level of strength or endurance I had before Addison's Disease, but I do believe that is because other things with my health were simultaneously going on as well. Addison's Disease added a definite complication to the other conditions, but I am pushing forward 110% at all times. There are days when I feel as if I am Superwoman and other days I feel as if I am too worn out to be worn out.

To this day, I am thankful that my diagnosing doctor crossed the finish line with his diagnosis of Addison's before death could get there first. Every day, I do my best to live right and to stay on track so that I have a better chance of staying ahead of Addison's. After my diagnosis, life did change. Oh, it certainly changed in a BIG way because I still had a rough road ahead of me and the damage of being ill for so very long could not be reversed. Ramifications hit from every side. Yes, every direction of my life and the life of my family was to change in big ways.

When I was first diagnosed, I was incredibly thankful to be given an answer to my body's failing condition and to have a miracle medication mix that allowed me to go from being near a consistently state of being comatose to where I was up and walking. I thanked God for every step toward returning health and to me getting back to being a Mommy! Of all things I had missed when so very ill, it was the little things I did as a mother with two young daughters...making their lunch, driving them to school, dancing around the living room with them, laying in the driveway with them for some awesome cloud watching and all the other "little" moments I missed when trapped in my body and unable to make it do what I needed or wanted. My diagnosis surely reminded me that miracles do still happen and that our bodies are an example of God's handiwork. We are a miracle. Life is a miracle. To put one foot in front of another is a miracle, to smile is a miracle and to KNOW it is all a miracle is what most changed for me after my diagnosis. 

Texas - Gulf of Mexico - Sunrise
Captured by my husband & best-friend.


  1. Wow, Lana, what a journey! It brought back memories for me. I remember that feeling of being able to walk again after starting on prednisone. In one day I went from needing help to go to the bathroom to being able to walk down the hall. All of a sudden food tasted amazing too.

    Thank you for answering my question! :) it is sweet of you to mention me. It's encouraging and affirming to read your story. Affirming because no one really understands how life changing this disease is- but you do.

    It was a struggle for me to get back to 'normal' after I was diagnosed. I still dealt with some anxiety symptoms and was frustrated with my diagnosis for months. And my friends had been so supportive when I was in the hospital, but they assumed that I was doing fine once I had a diagnosis and was back to work. I wanted to be 'normal' more than anything, but I had just gone through the most traumatic time in my life and I felt left to deal with it alone. Luckily I was able to find a good counselor, some better friends and I had my parents to lean on even though they were in a different state.

    Life is so much easier now, and I don't take it for granted. It's amazing how going through sickness and diagnosis of Addison's can change your perspective on life. It's like I told my boyfriend when we first started dating- I don't let Addison's ruin my life, but it affects who I am. You can't go through something like this and not be different.

  2. P.S. you're right, it is a Miracle. :) God is so good to turn our rough experiences into something we can relate to others through.

  3. Suzanna, you have such a kind spirit that seems to be full of joy with all that you share on your blog. Your journey was surely frightening, then to have a rare disease that is often not understood - that can also create anxiety. You put it best when saying that you do not let Addison's ruin your life --- it would be too easy to think of all the "what if's" and then base every decision on worst case scenario, but it is better to move straight along as you wish, but as prepared as you can possibly for any surprises. Post-Addison's diagnosis, I too am definitely different. We are forced to think differently in various situations --- prepared thinking can help us take positive action, if needed. The two of us along with several other blog buddies coping and living with Addison's can manage to put together a pretty good picture of life with Addison's. Some have more experience shoving the Addison's around and testing its boundaries - that would be me, so I'll keep trying to write about the surgeries, etc. that were a bummer, but proved that we Addisonians can make it thru - if we keep speaking up. These forums help us to gain strength through shared knowledge. Your true-life account of the hardships when you were diagnosed is very valuable. It is a disease that is difficult to understand. If a person is not close to you, they probably won't want to invest in the time to learn about the disease, unless it strikes them directly. Anyway, I thank God for my numerous miracles!!!


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