It's been so long since I've posted anything much on here. Maybe by blogging some of my thoughts, it will help in my healing process. Some of you know, some don't, I was diagnosed with Addison's Disease 3 yrs ago. It's a rare endocrine disorder that has destroyed my soul. Only because I've let it. As my friend Lana, puts it, http://findinglana.blogspot.com, "What is Addison's Disease in a layman's description?
Adrenaline is the hormone that can also be understood as fuel. It is created by our Adrenal Glands. Instead of us having to go buy fuel for our bodies, we have this amazing petrol/adrenaline station built right in our body so we can replenish ourselves as needed. If we would like to be environmentally correct, for those of us with Addison's, our solar panels are cracked and are no longer capable of storing up the energy our body requires for survival. Our power is dimming, so we will need synthetic energy through medications. The power factory is inside the adrenal glands and they send out miraculous adrenaline in appropriate releases. It's a wondrous system. It's a life-sustaining event that most people remain clueless about their entire lives. A silent, but indescribable system goes to work every day in your body, without a plug, without a reminder and without notice.
In the morning, your natural adrenaline levels are at their highest level. God is ultra-cool. He thought of all these scenarios with stress that we might encounter and he created us to be able to handle such things ourselves. Well, that takes properly working adrenals. Yes, our bodies are precise little boogers. High levels of adrenaline are normal early in the morning and this makes great sense. The levels are high because you are going to need a lot of fuel to wake up, get going and start your day. It's a dose being released into your body that says, "WAKE THE HECK UP!!! LET'S GET GOING!"
Some people may not feel as if their adrenaline levels are adequate...we've all felt drained at times, whether we have Addison's Disease or not. But, the Adrenals do their part to get your butt into gear. Someone might be rebellious; they push the alarm clock snooze button a few times and feel like a log that can't be moved. An important note is that we all have to confront the fact that our actions affect our bodies in a major way. If we stay up past midnight and need to wake up at 6:00am sharp, there's going to be a problem and your naturally released adrenaline is not going to be sufficient. Staying up late, watching movies, Facebooking or working overtime ---- whatever ---- if it affects your internal-clock and it will have an eventual consequence. Such is life.
If things are going on schedule and the person's adrenals work appropriately, many people hit the ground running in the morning and they go, go, go, until, evening approaches. Strangely, as the day wears onward, our wondrous bodies do something that is really cool...it automatically tapers the production of adrenaline to the bare basics so that our body can slow down and relax. Adrenaline levels are drastically reduced so the body will be able to eventually go to sleep for a good night's rest. So, adrenaline level measurements are starkly different from morning to night, and, if you are "normal," you NEVER have to think about any of this because your body takes over to handle it all. We have various auto-pilots throughout our incredible body; our adrenals are a big part of that system and it's easy to take it forgranted. Until, one day, those adrenals malfunction. The results are often devastating. For some, it means death. For me and for my Addisonian brothers and sisters, this means we have been forced to sit in the pilot seat and remain constantly vigilant so we don't crash..
If you have Addison's Disease, you must learn to "pilot" your body. It's a disease that has many storms to maneuver through and mountains to avoid...you can't have an endocrinologist at your side at all times, so you must be capable of listening for "engine" trouble, you must be in tune with the signals that deserve your attention for self-treatment. After you get your prescription with some extra pills in the bottle for those necessary "stress" doses during battling a cold, stomach virus, getting a kitchen burn, etc. you'll soon learn that self-dosing adjustments is key with Addison's Disease. Don't expect to get a bottle of pills and to "take two" per day and that's that. Noooooo. Far from it. Unfortunately, everyone has stress, physiological and emotional stress that appear, often without warning, on a rather regular basis.
However, before Addison's Disease, you just didn't have to think about anything but the added stress topic itself. Now, you must first think of YOU so that you can continue living and be healthy through stressful event - since your auto-pilot is broken, your medication can help in this battle. But, you must use your medication properly. Under-dosing can be a critical mistake. Your body, in times of stress, must get the proper dose to ward off an Addisonian Crisis. As I've said before, this is a trip that you don't want to make. Avoid it. Don't let denial be your downfall. Increase your meds as appropriate for your situation. You must make adjustments to meet your constantly changing needs - from pills to injections. As needed. If you favor sitting, standing and walking - even breathing - the Addisonian will seriously think about adrenal gland issues. They have learned that they must get their adrenaline from a synthetic form. Mainly, this will be some form of steroids.
Those of us with Addison's develop a regimented prescription plan for replacement hormone therapy in part by steroids, prednisone, hydrocortisone, etc. and for us...we are not getting anything extra out of steroids...we simply take the dose that the body normally would have provided. An Addison's patient needs their steroid supplements so their body can FUNCTION; those steroids, for the Addison's patient, is not sufficient for us to be home-run perfect. Our body is lacking this hormone. We aren't adding more to a current storehouse; our storehouse is empty so we are putting in replacement dosages. In fact, for many with Addison's Disease, we just want to take our meds, then be able to walk into the stadium and make it to our seat. A few of us will still be hitting some home-runs."
Finding her blog was a Godsend. Daily struggles, denial that you're not ever who you used to be, no energy, and I know everyone struggles with lack of energy but this is unexplainable. You'd have to be me for a day to begin to grasp the exhaustion. Realizing you'll never be who you used to be physically and sometimes mentally, is devastating. I've was diagnosed close to 3 yrs ago. I have yet learned to accept this. I refuse to but I know I have to. I want my energy back, I want to play ball again, I want to be so very active in my children's lives like I used to, I want to coach their teams again, I want so much. BUT, I'm trying to be patient, Be still and listen. God is teaching me patience. I don't want to learn it but I am. My friend Lana, says she was in denial 8 years before she learned to become content in her new body God had given her. And I think about it and I am being selfish. There are so many people out there diagnosed with chronic illnesses that aren't as lucky as I am. At least I can take meds, take them for rest of my life to live each day but I get to live. Some don't. Some are devastated by diagnosis of cancer, and other things and aren't lucky enough to get to live. Once again, quoting a wonderful writer, Lana, "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. " I am getting help now in dealing with all this. I WILL learn to be happy and live again, not only for me, but for my darling girls, family and friends. I will learn to be content and happy in this body life threw at me. I love photography. But I haven't loved much of anything lately. I feel maybe if I blog and post pictures, it can be therapy for me and help people understand how I feel. In no way am I trying to draw attention to myself or have anyone feel sorry for me. This is for ME, my therapy............and secondly for my daughters, Carlee, Allie and Raegan who have watched their mom deteriorate over the past few years into someone they don't know anymore. I love you baby girls, Mama is going to get better. I hope by blogging and explaining how I feel day to day will help you all understand better how I feel and understand this disease a little better. I love you all so much!
