Wednesday, January 19, 2011

#30 - Differences with Disease...Savoring, not Surviving

What is the most challenging part of managing your Addison's or Adrenal Insufficiency? Probably, it would be learning to note the day-to-day, minute-to-minute possible changes in the body's need for adaptive dosaging. This is not a condition where you "take two" and lay down. This is not a condition where you always have the luxury of making a future doctor's appointment to figure out why your blood pressure is momentarily plummeting. This isn't even a condition where regular EMS workers can always help because many of them do not carry our emergency injections on board their emergency land craft. No, this condition requires self-vigilance to your body so you can begin to recognize warning signs indicating that you might need to take a stress dose. Since it is the season of head colds, chest colds, etc., we are in an especially vulnerable time of year that might require adjusting our daily dose. Staying ahead of the game is crucial. It probably isn't a great idea to sit around and wait for the chest cold to set in fully before we decide to double our dose. Once you get signs of feeling run down, just an overall "tuckered" sensation, it's probably good sense to start swallowing some extra pills before your body starts to rebel.

Recently, I met with a medical professional and researcher to participate in a study that looks at how adrenal insufficiency impacts our life, physiologically and psychologically. If you cannot drag your feet to do your bidding, then your life will feel pretty much out of control. Doing your best to stay on top of your situation is a never-ending important endeavor. Don't give up. Each day is a new day...learning to distinguish the "little" differences in your body that could be a warning sign that you need to increase your meds is often a talent that takes a bit of time to master. Even with a great deal of time, it can still knock us off our feet. So, just do your best.

Also, during my awesome session with the researcher, I was under profound gratitude that research will soon reflect the vast differences of each person's body and the realities of how each person is impacted by an adrenal malfunction. One aspect of my discussions with the researcher was how one person with an adrenal malfunction can actually live on a high level of functioning; these people are fortunate enough to perhaps never need an emergency injection while there are other people who are more adversely impacted by their adrenal insufficiency and may suffer intensely while constantly trying to manage a wild-like condition. Not everyone has their disease packaged neat and tidy in a compartmentalized file-box of "you-do-this-and-you-should-not-have-problems" instructions. Unfortunately, adrenal insufficiency is a medical condition that can manifest itself differently, depending on the host body. My body is not a pleasant host for this disease; it tends to be rather mysterious and not consistently respond to regular, conventional treatments. It is a roller-coaster ride, every day, every hour...I am on guard for any slight changes that have me deciding whether or not to take more meds. Of course, I do not relish the thought of extra steroids in my body, not after having this disease for this long, so I am careful to distinguish my body's need so I do not overdo it, yet not under-do-it because either can equal trouble. I find that it's a tight-rope we must walk, finding balance is not easy. My little divided container of pills is so nice, but the organized neatness often becomes a small part of the daily task as I try to mentally sift through my symptoms so that I can hit the right medicine bottle in an attempt to self-medicate. Yes, self-medicating is a huge part of having Addison's/Adrenal Insufficiency - that is another area that is uncomfortable for the ENTIRE medical community who is rather comfortable with the "take two" prescription lifestyle. Having to leave the PATIENT with so much responsibility and power is not comforting, usually, for either the patient or the doctor, but it is necessary.

Sadly, many with adrenal insufficiency, especially those with children diagnosed with these conditions find that management is not a matter of "take your medicine and you'll be good as new." No, this medical condition has many, many variables...some people are subjected to more variables than the next person, so you cannot expect one person with this condition to tell you how it should be. They can only tell you of their experiences. Many of us with adrenal insufficiency/Addison's will relate to shared sensations, although, there will also be some people with this disease who pretty much escape the dark side of this beast. Just as we see "survivors" of breast cancer --- some had a simple fight, others have fought ruthlessly for years and years without a break, there is no equality --- and so, there are those people who fight adrenal conditions (often combined with numerous complications) with valiant effort beyond understanding. In my diligent research of this condition, I have come across fellow-sufferers who have stories of great triumph, yet there are others who were engulfed by the breakdown of little glands...adrenal glands, pituitary gland, etc. If you do not "suffer" from this disorder, then you are very fortunate for many of us have suffered unspeakably with adrenal issues --- many of us have been forced to fight for our lives, some of us, including me, on multiple occasions. With this condition, being side-swiped and taken off guard is not understood unless you have seen an Addisonian Crisis in action or have experienced it first-hand. Feeling your body sink further into the depths of a heaviness too far reaching to explain is not something you want to experience. So, I have learned that being a "survivor" or a "champion" is sometimes less about the surviving part and more about the level of your battle. For some, it is easier to be that "survivor" than it is for others. Fair? No it is not fair, but remember what your momma always said, "Life is not fair." She was right. If she didn't tell you this, then surely you have discovered it on your own. I have seen people with the spirit of a champion, yet they are not allowed to continue the race...sometimes, surviving is more about luck. But, who are we to say that being left behind is the "best" kind of "luck" to find? Maybe it isn't. Still, we fight. That fighting is the hallmark of a champion. So, maybe we should not focus on "surviving," perhaps we should continue fighting while focusing more on "savoring" all that is at our fingertips. I am savoring more than I can say...

The Husband & The Niece


  1. Hi, Lana. Hope the New Year is treating you well so far. It's been longer than I realized since I've written. It's been a wild ride for me since September. I had a couple trips to the Mayo Clinic around Thanksgiving last. The second had me riding around in a wheel chair with a final diagnosis of POEMS Syndrome. I just finished a series of 28 radiation treatments for a lesion on my femur. That sucker being the cause of my Addison's disease and ultimately, the neuropathy that was stealing my ability to walk. Things were getting kinda scary in December but finally stopped progressing after Xmas. I've got some mending to do, but we got way ahead of it more than most who suffer from it. And it ain't many. I thought Addison's was rare. There's probably about 100 of us POEMS folks in the US. And I'm one of only six with the single lesion variety (and this is a good thing)! That's 1:55,000,000 ! Lucky me :)

  2. Michael, I am so glad you got a proper diagnosis. Sounds like you have your name behind the dictionary word for "Unusual Diseases/Syndromes!" The Mayo Clinic is incredible - thank God they discovered the lesion. As for your neuropathy...I hope that some of it can be reversed. I had a spine collapse/break in Jan of 2008 which required 3 vertebra to be rebuilt with cadaver bone. I only had about a pin-head sized amount of spinal fluid getting thru. I was then double-plated/bolted/screwed back together in one surgery that went thru the back of my neck - part of my head shaved -5 inches of incision, then the surgeon flipped my body with a halo on to stabilize my head/neck during surgery so they could continue with a second surgey to go through front of my neck to put me back together. My break was so severe that I needed a rare double-sided surgery. But, thinking of your situation, I wanted you to know that I had experienced a severe loss of feeling w/tingling, etc. in feet and arms-had got to point of dragging my feet, not being able to lift legs & I was told by my neuro-spine surgeon that it was unlikely that I would regain usage/feeling. However, it took about one year post-surgery & I did regain more than they ever imagined I would. So, don't give up hope. Sometimes, the doctors give a prognosis that can only express limitations, to be safe. But, keep on paying attention to your body & have faith that you are on the road to healing. You, like me & so many others with Addisons/Adrenal Insufficiency, also have other serious health issues...yours is so unique, I am thankful for your diagnosis & treatment. It's good to hear from you; your family is getting my prayers & good thoughts!!!!!


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