Wednesday, April 20, 2011

#62 - Can You Tell?

There have been times when I have had an Addisonian Crisis hit me so strong, from a sitting position, that I can barely hold my head up and cannot keep my eyes open. Sitting on the sofa, I cannot say a word to convey my predicament, and I suddenly cannot get up to do anything about it. It can hit like a lightening bolt and leave me trapped in my body like a ragdoll.

Everyone is busy doing their own thing. My husband is outside in the backyard. Leaning back on the sofa, I am sinking further into my skin as my blood pressure plummets further and prevents my body from being able to yell, scream, or shout for help. These are moments you know this disease is deadly serious. It's not about how "strong" you are or how it "never can happen" to's about this disease randomly showing its ugly teeth and holding you in its relentless grip.

As my husband walks through the backdoor, I try to open my eyes and to make a sound, but my body is already in the depths of an Addison's Crisis; I am drowning. Barely, I see him stride past me with purpose as he glances over at me. Little do I know, at the time, he thinks I've simply laid back for a little catnap. He has no idea that I am IN THERE SCREAMING for him to realize that this isn't a moment of resting my eyes. This is life or death; I can feel my life dangling, but I cannot force my body to do something it has forgotten all about. I am swallowed up.

Lying there captive to my own body, I finally realize that all my internal combat will not do me any good. All it will do is cause me to sink further away, at a faster rate. So, I quit trying to open my eyes, I quit trying to struggle against the natural course that my body has unnaturally followed. I drift off. Now, when my husband passes by and sees me napping, I am truly knocked out, but not by choice. Somehow, I let go and by God's grace, so far I've always been able to slowly start finding my way back.

As soon as my body will function on a slight level, I stumble upward to get to my emergency dose. Taking it, I relax until it kicks in and then I find myself a new woman. A sort of rebirthing process has silently taken place and I can't help but rejoice for the new beginning I've been given.

Later, after I tell my husband that I had been in an Addisonian Crisis as he strolled past me in the living room, he is thoroughly upset.

He asks me why didn't I tell him?
Well, I could not communicate.

He asks why I didn't take a stress dose sooner?
Well, if I'd known an Addisonian Crisis was going to kick in so rapidly, as I was sitting down, I would have flown into action...there were no typical warning signs this time around.

Then, he makes the most disturbing question of all...
How could he have walked past me and not have known that I was in crisis?
Well, a person napping does not look as if they are in a struggle, they look as if they are peacefully sleeping.

My husband has found this part of being a partner to an Addisonian most difficult. The times he looks at me and thinks all is well, then discovers I am in crisis mode is very unsettling. There is not always a flailing, a physical drama of indicating there is a crisis underway, there is usually an absence of the shout "get the stress dose!" and there is often no cut and dry warning signal to make this disease easy to live with.

This past weekend, on our land, I had been through a night in the 40's without heat and in the morning I went into crisis. The main problem was that I was in a tent, my husband was a couple hundred feet away and I had gone so far down as to be encased in brain fog. However, my body was still somewhat awkwardly operational, yet not fully cooperative. I had managed to get outside the tent and to take a seat and to feel the increasing warmth from the sun. He walked over and sat in the chair next to me and began talking.

Suddenly, I felt like passing out. I knew my body would not remain in a sitting position for long, so I suddenly tried standing up to make it back inside the tent and to my medicine. I'd already taken an early morning dose of Hydrocortisone, but knew I needed more. I literally jumped up to move to the tent fast because my body was about to go into another state of existence, I've already learned that there is a point when my body separates from my mind and that is when the body simply won't cooperate, per a typical Addison's Crisis.

Yes, I was in a rush to beat the crisis from taking hold. My husband gave me a strange look and stood to help. He put his arm around me and it was then that he realized I was having trouble taking steps and that my body was shaking with weakness. In the tent, I immediately reached for the Hydrocortisone and gave myself another huge stress dose. I knew I would be okay; I had gotten there in time and just needed to relax. Meanwhile, my husband had gone to my purse to get my emergency injection. He was shaken from sitting so close to me and not realizing that I was going into a crisis. I wish to have grown purple spots from head to toe so it would have been clearly evident, but that's not how this works. He can't beat himself up over it, such is life with an Addisonian. It can be a roller-coaster for those of us on the dark side of the wide spectrum of affliction.

That afternoon he told me that every person who lives with an Addisonian should realize that the signs of crisis might be non-existent to outsiders. At times, it can indeed be clear that there is a problem, but during that initial phase of slipping into the crisis it might be subtle and without a neon sign and foghorn directing attention to the problem. This man knows me. I've been married to him for nearly 25 years, but this disease is like a sly fox. It can sneak up on the person with the disease and surely fool onlookers, even medical doctors. This is why it can be difficult to treat. A person in crisis going into an emergency room does not always look as if they are in the right place. Medical staff who do not understand Addison's cannot comprehend that a quiet, healthy-looking person can be fast approaching death. Unfortunately, that is often how it works.

There are people with Addison's who never experience a full-blown crisis, then there are others who know all too well how it works and they take every imaginable precaution, but this disease is not always so easy to manage. You might be doing everything perfectly, but I have learned a hard lesson to is not perfect and Addison's is not a disease that can necessarily be "tamed" by a regiment. There are variables in life and these can sometimes wake the Addison's monster.

Do all you can to avoid a crisis, but try to communicate an oncoming problem with those in your family. On that cold morning this past weekend, my brain was already wavy and the synapses were firing slow and muffled, so I could not communicate to my husband what I did not clearly understand myself. However, whenever possible, just say, "I am having trouble," or something to simply alert those around you that there is a potential issue arising. If you are like me, you hate to call attention to yourself and you prefer to handle these things on your own to spare those around you from being a nursemaid, but sometimes you must be able to wave the red flag.

I'd like to say that I could've done something better or different this past Sunday morning as my husband stood in shock and realized that my body was stumbling and going into jerky motions because of Addison's. Not letting my body become so taxed by the cold would have been a great start, but there I was. Life happens. I was very fast in taking my meds, my second dose that morning, so I was making adjustments, but it was still scary for him to witness after he'd been sitting next to me so peacefully, only to discover his nightmare had been in silent action.

At least I wasn't to the "napping" stage while we were in the middle of wilderness. But, if that does happen in your situation too, I guess family members could walk over to their Addisonian loved one and pull open an eyelid while asking, "Are you asleep or are you in trouble?" If there isn't a response or if there is a garbled answer, well then, the answer is clear and action can be taken. Of course, this might get irritating over the years, but it just might save a life or two.

Beautiful bulb flowers we found growing wild on our land. What are they?


  1. Hi Lana,
    how crazy! I've never had anything like this happen to me, and I wonder if I ever will. I'm so glad your husband is so caring and such a partner for you! When I was diagnosed, one of my biggest fears was that I would never find someone who could 'deal' with having a wife with Addison's. I never want to be a burden to anyone, but I know that being with me isn't always going to be easy. My boyfriend is becoming better and better at knowing what I need, and when we're around each other he's so helpful and loving. Whenever I say anything about being thankful for him and how he handles my health issues, he scolds me and says that he is not doing anything extra or hard. I'm working on writing my Addison's story, and it's turning out to be the thing that has most shaped my life so far- and I'm hoping that Blake becomes part of that story. :)
    I hope you have a wonderful Easter celebrating the Gospel and spending time with your family!

  2. Hey Suzanna, my blood pressure, even with my strict medication regiment, can still suddenly plummet to a level that barely sustains life. It used to be a lot scarier than it is nowadays, but I will never get accustomed to it. I do all I can to prevent it. Usually, I can head it off quickly, but every once in a while, it dips so fast that I can't even react fast enough. Keeping enough HC in my system helps me get thru each one of them, but it can get pretty darn close sometimes.

    Yes, we are having our annual huge Easter celebration at our house and the Good News of Christ Risen is ALWAYS in our hearts --- enjoy the Easter weekend with your loved ones too!! And little Brody!

  3. Hi Lana
    Wow! I was diagnosed with primary Addisons in 2004 and I've been lucky to never experience anything even close to your experience. I wonder sometimes what exactly it is about our bodies that make some of us so much more vulnerable to crisis than other. Although I know I had symptoms for years, I was only actually 'sick' for around two months before diagnosis and didn't sink anywhere near as low as I know you did. When I was diagnosed I was on 100mg of Hydrocortisone for a few days, then 50mg, then left hospital on 30. That was slowly dropped over the next year to 15, on which I do well. I think the fact I was diagnosed early then given more than I needed when I WAS diagnosed helped my body bounce back and stabilise itself, but of course that's just a theory. In any case, I hope you have fewer and fewer of those scary episodes.

  4. Hey Pip...I am so glad to hear that your diagnosis came within a good time frame, but I am sure it was still very difficult for you. I also have other conditions that "irritate" that Addison's so that complicates matters, but I have indeed had fewer and fewer crashes through the years. It took a long time to get me stabilized since I had been very sick for much too long with my organs taking a hit. I always find it amazing that I had been in the heart of a major medical center with top physicians and they constantly missed the diagnosis until it was nearly too late, then you hear of someone in a small town who had a good hometown doctor discover their condition relatively quickly, without being an endocrinologist. It's always interesting, that is for sure!!! I do think it was an excellent decision to also have you on high stress doses at your diagnosis, that is also an area where my doctors did not do the right thing, but they were so stunned and really didn't know what to do, other than to tell me how shocked they were at all the results because it is so rare. I hope you never experience a crisis such as I have experienced, but if you do, I am sharing my crisis episodes because I want people to know the details of what it might feel like and that there is a good chance you will pull out of it. I don't always have the extreme nausea, etc. as a warning, sometimes it goes to immediate blood pressure dropping drastically, without enough warning to allow me to move my body. It's not as scary any more...I don't know if that's good or bad, but it doesn't happen as much, that is definitely good!!!! Thanks for reading Pip. Do you blog??

    Lana C.

  5. I have come to the place when I can feel when I am getting in trouble. I have my shot ready at all times and have used it! After so many years I know when I need to go to the hospital and when I can handle myself at home. My Hubby and my kids recognize the signs also. The last time I was in the ER was for food poisoning. I had two shots at home, and after I was done puking and pooping I got there quick for some IV steroids and to be rehydrated. The ER doctor was impressed that I had known what to do and kept myself from crashing. The next time was with a horrible stomach virus that my Hubby shared with me. He only threw up once...but me ha! I was laying on the bathroom floor for hours. One shot later and as soon as that nonsense stopped I went to the ER for steroids and rehydration. Again the ER doc was very impressed. Hey Guy! I know when I'm in trouble, and when I am...i get here quickly. We are all different but all the same. I've also had that out of the blue, out of body experience that you described. You try to get someone's attention and they think you are happliy napping. Damn this Addisons!

  6. Hey Mo! Those E.R. visits surely aren't fun, but it's good to get there when needed, & quickly. My trips to the E.R. have drastically been reduced thru the years, but there are times when my "syncope" hits fast & furious. That is the part that has been the hardest for me. But, for this past weekend's trouble, I study it & think that my crisis had actually begun while sleeping in a much-too-cold environment. So, I basically woke up going into a crisis. I have found one particular E.R. near my house that actually knows how to respond fast to my Addison's disease. Sadly, if I head downtown to the medical center, things seem to drag on & too many of the doctors are arrogant & unwilling to admit that they are unaware of the "time is of the essence" factor with this disease, so I try to stay near my home-town for those emergency trips. Fortunately, I've not had one in a few years, thank God. But, I have learned to get thru close calls on my own & with family...truly, I have times of crisis happen so fast that there wouldn't be time to get the an E.R. anyway. I just have to be ready at all times to tackle it fast. I am fortunate to have family around me who are very experienced in this area, but those times of falling into the unconsious realm while appearing to nap is my all-time dreaded type of crisis. Still, I have been blessed, am living an awesome, jam-packed life & have so much to look forward to...we just keep going as best we can!!

  7. Good morning, Lana. Just hopping over from Jean's blog to say hi. What an encouragement your words must have been to my friend. And that comforts me. Blessings, and thank you for living out your story in a way that helps others.

  8. Gretchen, thank you for commenting so I can know you were here. :-) I am always amazed by Jean's honest strength. It is very touching to know that our seemingly insignificant efforts make a small difference...I've learned that living honestly & reaching out while letting others reach in can be very comforting, for sure. Thank you again & I will probably be seeing you again very soon over at Jean's blog.

    Lana C.


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