Thursday, March 1, 2012

# 113 - Up and Down and Up and Down

The thing about Addison's disease that irks me to no end happens to be the ups and downs that come with this disease. Of course, those ups and downs have a good side and a bad side to it.

For some, there are more downs than ups. There are people with Addison's disease who have been severely impacted, even with brain damage from the lack of oxygen that takes place during an Addisonian Crisis as blood pressure plummets. If this happens during the night, there can be little prior warning to an oncoming crisis.

Unfortunately, I've been in the position to have an Addisonian moment during the night or in the wee morning hours and that time-frame can add even more challenging difficulties in getting the right help in fast order. Keep your medicine bedside is the lesson I learned off the bat with this disease.

Most of us know that there are many people who lose their life to this condition, so it is imperative that we people with a "brittle" condition, which means we are more subjected to difficulties managing the disease due to other uncontrollable circumstances or conditions, we who struggle with this disease must stay extra vigilent in doing our best to ward off an impending crisis.

For me, it was difficult to realize that I needed to up my medication for ANY kind of stressor...did I know that physical exertion would be necessary in my foreseeable future? If yes, then up that medication. Did I know that a big emotional event is on the horizon, such as a child's graduation, getting a call that your teenager has been in a car accident, having a loved one require your care during their own illness, or was I facing the imminent death of a loved? Yes? Up those meds. There are so many areas that can tax your body---don't be unprepared to up the meds.

Of course, life has a habit of throwing curve balls, so there won't always be a ready-answer for upcoming hardships and stresses, just be prepared to take extra meds as fast as possible. It should be the first thing you do...before freaking out about a car accident, before you start mourning, before the shock sets in and before you decide do something unusual, such as paint a room in your house. Be aware. The little and big things in life should prompt your attention to first go to your medicine bottle and then continue on with life's ups and downs.

A couple of months ago, I had to drive my youngest daughter and I back to the southside of Houston, all the way from the Dallas area...a five-hour drive. To make matters worse, we were traveling with THREE dogs, one of which was extremely car-sick and vomiting frequently, in spite of every kind of remedy. Topping it off, we had to make the trip late at night and it began raining on us as we were driving down the black-top slick two-lane highway in-the-boonies of Texas, without street lighting. The danger of a deer or stray animal running out in front of our truck remained in our minds in this country-setting. Then, we hit horrible road construction that had less than ample signage. Soon after beginning our trip, I began to experience "adrenaline dumps" on a regular basis; it soon became clear that my condition would make this drive a horrendous experience.

To combat this constant adrenaline rush upon my body, which Addison's disease prevents us from being able to confront without medication, I was required to do something I'd not experienced on this level ---- in over ten years of living with this disease --- for the five hour drive, I was forced to take a couple of lump boosts of my Hydrocortisone up front, then keep taking 5mg of Hydrocortisone approximately every 15-20 minutes for the entire trip to ward off the clear signs that I was going into a danger zone because of the constant stress while driving.

For two hours straight, there wasn't even a safe zone to stop at, not with us two gals. We decided that I could pull off the road and get into real trouble with my Addison's, in the middle of nowhere and without a hospital in sight, or keep going and keep trying to feed the disease with increased meds. My injection was out and ready to use.

It took a long while to get to a safe point on the far outskirts of Houston. Even then, we knew we couldn't pull over to sleep in a hotel for the night because of the three dogs. A strange hotel would certainly mean barking dogs. We debated the possibility, but it would not be easy to sneak a Collie/Boxer mix, a Black-Tri colored Australian Shepherd and a Yorkie into a hotel room. Even more unthinkable would be to try to keep all three quiet for the duration. It was another recipe for misery.

So, we plugged along and kept heading for Houston.

However, I learned that even though I have great driving abilities, I discovered that the stresses of driving under difficult conditions for a prolonged period of time is definitely a time of trouble that requires increasing my medications significantly. I have always driven all over the problem. But, I had to admit that times are different since I developed this disease. You can't avoid some conditions on the road, such as a sudden rain-storm or construction that is ever-changing.

I can guarantee that I won't be ready to drive at night any longer. I won't be taking long distance trips with a dog that is a vomit bag and makes me worry about whether or not she will survive the trip due to severe dehydration. And I won't necessarily be able to always escape rain during a long trip, but I will continue to depend on weather reports...hoping they will be more accurate than not. Anyone who knows Texas, knows this is the 50/50 rule of the weatherman, which means, "I just don't really know." Texas is subject to isolated rain showers at any moment. Period.

Plus, during any travels, I'll continue to be sure to keep large amounts of Hydrocortisone on me, in 5mg tablets because they gave me the most perfect increments to consume. I'd initially begun the extra steroid dosing when I first felt the wavy head and the vision blurring...taking 30mg, then another 15 mg, and when my symptoms began to fade, but the adrenaline dumps were clearly still taking place, I then continued to take another 5mg every 5-10 minutes to replace the synthetic amounts I was expending for each stressor.

Not knowing the roads didn't help. Once I reached those lovely far out-skirts of Houston, I began to relax and man-made lighting from Houston's city limits brightened the entire sky, as if a huge flash-light were being shone from a giant hand. All the city conveniences, especially the wide roads, not having to drive next to concrete construction barricades for miles and miles and the concrete highways instead of asphalt made the trip much less stressful.

This was a very different experience for me with Addison's disease. My youngest daughter had known how dangerous my condition had been and she kept volunteering to drive, but my condition was still a better option with driving than her inexperience on highways would've been for both of us, especially on wet roads that were under construction and doggie distractions. Experience can indeed make-up for many short-comings. If I had found myself going too far into an Addisonian crunch, I would've immediately pulled off the road and put my hands in the air. I very well came close to doing this several times. If we hadn't been so very alone on the roads, I might have considered it more easily.

Photo of a Texas highway during the day.
We were on more narrow roads, without another
soul in sight, in the dark.
To tell the truth, I didn't want to "give-in" to my condition...I wanted to keep battling and taking the meds that would force my body to behave more properly under stress. Regardless, I was amazed at how much extra HC it took before I began to feel "normal" again. It probably took an easy 80mg for the entire five hour trip, and we didn't make one stop, we drove the entire way through in our desperation to reach home.

In the end, I learned a valuable lesson about traveling...from now on, I will personally take extra meds up front, perhaps an even higher dose than I believe is necessary before the trip commences. I won't mistakenly think that traveling, just because I've done extensive travel my whole life, will be no big deal.

It's better to be safe than sorry.


  1. Lana, I had no idea what this disease could do, until I started following your blog. You are one very courageous woman, and definitely a fighter. Thanks for the lessons.

  2. Lana, I found early on with AI that driving was a particularly stressful activity. For me, 4 hours of driving used to be no big deal. Now I know that a 1 or 2 hour drive could really fatigue me. I usually take 5 mg of hydrocortisone per hour of driving. Everyone is different of course, but driving is definitely an issue for me.

  3. Ian --- Thank you for your encouragement...I see people around me every day who are surviving with serious illness and I want to be honest about what it's like to live with such issues. It's not easy, but I keep going.

    Michael --- It's great to hear from you. I know what you mean about driving being no big deal, once upon a time, but now it turns into a night-mare that is dangerous to my health. It is still shocking to me sometimes when I find out how delicate my condition can be, without warning. I was devastated about this inability to make this drive because the drive is to my oldest daughter's house. I cannot express how devastating it had been that the "simple" drive that I'd once been able to make years and years ago had transformed into a scary event that put my life in danger. I wish I had the magic answers to everything, but taking extra meds is our only solution. We hope that will be enough to keep the monster at bay. I'm sorry you experience the same thing, but I cannot tell you how much I appreciate you letting me know that this is also a problem for you.


  4. Lana, I'm slowly learning what you mean by how sneaky this disease is. Thanks for sharing. What do adrenaline dumps feel like for you? I get a sudden shock/tingle sensation through my body accompanied with a sinking stomach feeling. I have been wondering what this is.

  5. That is exactly what I feel. The shock/tingle feeling can then be followed by other symptoms. The problem with my trip is that the curving road had me experiencing regular dumps, I guess because I could not see the road well due to lack of lighting and the rain. So, the dumps kept happening. I've never had so many in such a short period of time...back to back. I definitely got a chance to feel them over and over. It was horrible. I never imagined that driving could provoke Addison's issues, the high stress of driving under such bad conditions was not good for my condition, not good at all. You described the sensation perfectly thought. I didn't know how to put the actual "adrenaline dumps" into words. The "sudden shock/tingle sensation" is very accurate. Yes, this disease can indeed put us into situations that are not so blatantly headed our directions with bells on, the sneakiness is something that I still try to figure out beforehand, but life seems to always give us a knew lesson around the corner.

    I hope you are doing well Regina.


    1. "thought" is "though"

      "knew" is "new"

      Brainfog day, for sure.


  6. Funny, I get most of those tingles/shocks while driving as well. I also get them when confronted with "less pleasant" people or situations in life. This just gets more interesting as I go along.

  7. Lana, I made the mistake of driving to my endo appointment by myself a few months ago. Bad idea. Simple enough drive, except road construction got me confused and I got lost and turned around so many times I never thought I would make it home. I did end up swallowing some extra meds to keep me going. I never heard the term "adrenaline dump" before, but I sure know that feeling. Glad you finished your trip without any major incidents.


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