#90 - Finding Yourself After Addison's / Adrenal Insufficiency

Last evening I attended my first Addison's Support Group in Houston, Texas. Since this is a very rare disease, I already knew the attendance would be minimal, but I was determined to be part of the group. It's taken me over a year to finally make the trip to be there...a part of me was scared to go...scared at what I'd find...scared about what I'd learn, but I am so thankful I went; the visit allowed me to recapture of bit of the old me that was adventuresome, curious and participatory.

Beside me in this meeting, ready to make his own valuable contributions, sat my best-friend and husband, David. He has learned more about Addison's than can be imagined. He knows what to do during a crisis; he knows how to recognize symptoms of an approaching crisis; he knows how to make sure I get the best care possible when in an emergency room setting; he understands my battles and the devastation I've encountered; and he shares in my triumphs along with his own trials during our co-battle against this disease invading and wrecking our home. If you have researched Addison's disease, you learn quickly that many homes have been devastated by Addison's disease. Devastated beyond my comprehension. So, I'm very fortunate to have loving family who are supportive. As I've written before, my husband is my Comrade.

Dr. Tom Rodriguez is the charge person in these group meetings; he is the leader and organizer. We respect Tom because he's had his own battles with Adrenal Insufficiency since approximately 1995. I'd say he is very experienced personally and professionally with this disease. His research and valiant attempt to change current available data on this disease is amazing. I am so grateful that someone who better understands this disease is taking active steps to dispute so many inaccuracies presently on record.

Only one other Addison's patient was in attendance and she had brought her beautiful adult daughter, Heather, with her...which I found to be a strange link because my first-born daughter's name is also Heather. Besides Tom, the meeting organizer, the only two attendees in the meeting, both women with Addison's disease, both have daughters with the same name. Isn't life funny at times? It was beautiful to see mother and daughter so close, so supportive, so raw and honest, so caring about each other. Together they are experiencing the ups and downs of this disease and it has changed both of their lives. Heather ached for her mother's suffering while enduring her own suffering. This daughter probably knows more about Addison's disease than many doctors...she, like my husband, sees the reality of this disease first-hand.

My heart ached for my newfound Addison's friend because she is at the point in the disease when the struggle is mighty. For those of you who have had Addison's rip apart your life, then you know about the ensuing disbelief, sadness, anger, and you know about the chords of helplessness resonating deep within you. You endure all of it because there is nothing you can do to stop the Addison's disease from taking a mighty hold of your body.

Now, I do understand that a few patients have minimal effects after this disease is discovered, but my new Addison's friend had, as in my case, gone for an extended period of time undiagnosed and the prolonged deterioration took a harsh toll on her physically and emotionally...regular life was gone. Gone.

So, one of the hard topics of the night turned out to be how difficult it is to want the "old you" to come back, but as the years pass and you grow farther apart from the old you, it starts to sink in that maybe you'll never be back to the way you felt. Maybe you'll never have the abilities you had before Addison's disease.

Her and I had so many similarities with our disease progression that it felt as if I were looking in a mirror. Since I've had this disease for ten years, my heart cringed for her because I remember the 3-year stage and the devastation at realizing the old me was not being recaptured as I kept holding out hope that I'd find her again...that I'd wake up one day and suddenly the "old me" would be here again and the Addison troubles with pervasive exhaustion, joint pain, frequent nausea, body fluid balance troubles, mental confusion and other irritating interrupting symptoms associated with Addison's disease would magically disappear.

The realization that you cannot go back to your pre-Addison's state is devastating. I've written about how our idea of "recovery" is altered as we learn that this disease diagnosis, for me, meant that I would eventually become "stabilized," but not necessarily "recovered." This was extremely difficult to accept. I was defiant about it. I insisted that I would completely recover and even held out hope for EIGHT YEARS that I would BEAT Addison's disease ---- somehow. But, seeing the MRI with the words that my adrenals were not only atrophied, but completely "withered" was a huge wake-up call. I'm not going to grow a new set of adrenal glands. So, that dream of a complete recovery is impossible, so I focus on being the best I can be where I am right now with what I have at my disposal.

I have learned to listen to my body, to respect the new boundaries and to not feel obligated to explain my pulling back from society...I do what is necessary so that I may have as many good days as possible. And, even if the morning is terrible and I feel miserable, there's a chance that the afternoon will be marvelous. I've learned that my life is more of a roller coaster, but I can either fight it or go with the flow.

My new friend is trying to reconcile that her former self is a part of her past and the new her is something that can be better embraced once she's more stabilized with her Addison's disease. It appears that she is having trouble with balancing fluids and perhaps Florinef can be as magical as Hydrocortisone for her. Of course, finding the dosaging that is right for each person is a challenge...this is not a disease where we can test our levels and say, "Oh, I need another dosage right now." Unfortunately, we must learn the hard way...as our body goes through health pitfalls.

Dr. Rodriguez made a great point when he discussed the difference in Addison patients...one might be stabilized and have little difficulties managing their disease while other patients might be "Brittle" which means they are more fragile with potential life-threatening episodes and it is more challenging to stabilize the disease --- for a number of reasons. Just as MS can find one patient living a full, normal life without any interference from their disease, but the next MS patient goes downhill rapidly to the point of dying...so it is with Addison's disease.

Unfortunately, with this disease, management is not always KEY to doing well. I can manage my disease perfectly, but still end up with disasters as my body's need for Hydrocortisone, etc., changes drastically, in a blink of an eye, too fast for me to barely respond at times. As with the rest of life, there is a lot of pure luck involved. Yes, life involves luck or we wouldn't have the old adage, "Life isn't fair." Some people are VERY fortunate and lucky to be diagnosed early so that they are not forced to suffer. However, others took a downhill plunge into unimaginable darkness before they were diagnosed. If you didn't go down into this darkness before your diagnosis, then yes, you are lucky and be glad for it.

Also, there are Addison patients who have other bodily complications that make managing Addison's a daunting task ---- other conditions can tax the body and this, of course, creates huge issues with an Addison's patient. Like I said last night in our meeting, "It can become a scary juggling act." Logical reasoning shows that the less complications you have with other conditions means that you will certainly have less juggling to confront in managing Addison's.

Anyway, my sadness at seeing a mirror image of what I'd gone through with having to basically say good-bye to the former person I'd been before Addison's disease was palpable. There is a mourning involved with knowing the old you is gone. Yes, a huge part of yourself  --- your core identity --- it's still there, but the core identity no longer has the same body as its partner. It's as if you are divorced from part of your self or a part of you has died. So, you go through all of the same emotions of mourning a unbelievable loss and it's just so darn hard to believe that things will never the same again.

However, the different future in front of you can be filled with joy as you learn to savor things in a different way. You learn to take the good moments and magnify them. You learn to discover new areas of strength --- such as for me, it's writing. Before I had Addison's, I'd always journaled, but did not focus on my writing as much because I was too busy with life. I love writing, but did not have the time to slow down to do it as I would have liked. Addison's disease changed that part of my life. Now, I write.

As for the personal side of dealing with Addison's on a challenging level is that the constant resistance by your body can create unknowns that can threaten to suck the joy out of you. After a few Addisonian Crisis episodes, you start avoiding social settings and avoiding going out because you do not want to go into a crisis around other people. You certainly don't want it to happen when out of your element. Needless to say, people around you will NOT understand an Addison's Crisis. Hardly anyone has even heard of this disease, so how would they recognize the symptoms of a crisis? This can lead to isolation, again, for the Addison's patient who is easily managed, this may not be understood, but even if you suffer from serious bouts of nausea and exhaustion, the troubles of this disease may cause you to withdraw to a certain degree in order to protect yourself.

Previously, I had thought this was a tragedy. However, now I see my life different and my social interactions are still present, but changed in a way so that I can have more control over my circumstances. There is nothing wrong with this. If you have a disease that impacts your ability to function normally, then you must adapt and quit letting the world dictate what is "right" and "wrong" for you. These days, I savor my independent, quiet times. I no longer miss the hustle and bustle of city life as a business woman with frequent socializing. I have narrowed my social focus and my life is actually more meaningful. Just because you are in movement and on the go does not mean your life has more meaning. My life, with lessened "out of doors" socializing, has become deeper and it has given me time to slow down to absorb life in a different way.

If you are one of those people who has been through a few terrifying Addison's episodes, then your life is changed. Period. There's no way around it. And I'm not talking about an episode that is just with nausea and diarrhea, I'm talking a crisis episode where you hit the floor and don't know where you are because your blood pressure has plummeted so fast that you didn't even have time to respond. After a few of those episodes, you change your activity direction. The lack of socialization can be devastating...it can be depressing and the isolation can be enough to drive you nuts. Going through this stage of being helpless during a crisis too often can crush your spirit, but you have to re-learn how to live again...with the knowledge that your body might deceive you during the most inopportune moment. It takes bravery to go forward with a body that you can't rely upon. But, it can be done.

As I mentioned above, I've adapted and withdrawn from being in TOO MANY situations that might create problems for me with Addison's and I'm happier for it. But, I did have to adjust to my changed life. Maybe you won't be nearly as social as you'd once been, but you can pick and choose your moments to make an appearance and do everything you can beforehand so that you have a better chance to have a positive experience, instead of ending up on the floor or embarrassed by a hurried, unexplained exit. One trick that has helped me to deal with these stresses is to NOT CARE WHAT OTHER PEOPLE THINK about my choices for my health. If they don't understand and if they don't care to TRY to understand, then I do not care to educate those people---those are the people who choose to live in ignorant bliss, let them. Besides, how do the opinions of other people REALLY impact you anyway? It doesn't...not if you don't let it. Everyone is entitled to their opinions, but if you are doing what is necessary for optimal health and the next person is not understanding, then you must move on and realize that their ignorance is theirs to own...it is not your problem. Live your life fully, as you see fit.

Finally, I've found that after I began to try to focus on other things instead of all that I've lost, then I was better able to move forward, but it's still not so simple to do. You'll never be able to take the intense focus off of yourself with Addison's disease because of the high level of self-regulation required for pro-active management. And, if you are indeed a "Brittle" patient, this can be much more involved than for a patient who gets up and does everything they want to do because their body, fortunately, cooperates on a higher level. Having more complications means that you will face more challenges, but you will also be stronger for it. I've found that Addison's has deepened my life on multiple levels...I'm not the same person, but in so many areas there have been huge incredible improvements that I might not ever have experienced if I'd not gotten so sick. This disease may have changed my life, my direction, my abilities and my focus, but I like who I am...I have a great deal to offer, I love my life and the simple, beautiful things around me still capture my attention. I'm thankful for all the love I've seen, the support I've been given, the chance to give support to others in need, and I absolutely love the new set of eyes I have been given since my diagnosis.