ENTRY # 16 - Addison's & Little Warning Signs...

Short Description of Signs...A sign can be blatant or hidden behind a shrub or hidden behind mental determination stronger than metal.

In almost ten years time, I've learned to pick up on the subtle signs that an Addison's crisis might be underway. Of course, these are my personal signs, but I've heard of fellow Addison's patients having very similar experiences. Most of us with Addison's know about the extreme nausea, diarrhea or stomach and back cramping, but I have had this disease long enough to pick up on other slight "tips" that a sinister crisis is lurking a few steps behind me.

Most of us have been on an elevator and as we descend downward, the elevator makes stops at various floors with a momentary hitch upward and downward; in that brief second, it feels as if you are floating and then sinking. Sometimes, your tummy may drop. Other times, your knees slightly give and you reach for the railing as your brain catches up. In that moment...with all those sensations...that is one of the bodily feelings that I get before an Addison's crisis hits. I may be walking along and suddenly have that "elevator sensation" hit me, out of the blue. My body feels as if it literally sinks, then rises. Just like on an elevator, it's an all-over sensation, from head to toe. If I have that kind of moment, I know it's time to go take an extra 5-10 mg of hydrocortisone, at least. Quickly.

Another weird thing that happens when my synthetic adrenaline needs to be upped a notch is when my feet start to drag. Oh, it can be very slight. For years, I often ignored the very little difference in my footing, yet I still noticed. However...now, I realize that this little bit of difference can signal that something very big is on the horizon. Downstairs, throughout our house, we have Italian Porcelain flooring - it's cool and lovely and has standard grout lines. Very typical. But, on days when I am not completely aware that I need extra hydrocortisone or when it's the end of a long day and I am more tired than I want to admit, sometimes, my foot will not lift up adequately enough to clear this itsy-bitsy ledge. It's always amazing to me how my foot can actually drag and catch on the near-non-existent grouted tile edge. Of course, after all this time of having Addison's, I know that it's not an inconsequential issue. My foot dragging is a symptom of huge underlying monster trying to stealthily close in on me. These days, it is clear that if my feet seem to stumble more than usual, I need to take action.

Of course, there are times when a full blown out Addisonian Crisis takes hold. I've learned, the hard way, that these can happen, even under the best of treatment. It seems that some people are more susceptible to a state of crisis than others. Perhaps an underlying condition or additional health conditions are partly to blame...those may stress the body in ways that are not often clearly understood soon enough. Those bodies, under more constant stress will, no doubt, have more challenges with controlling their Addison's disease. But, as for a crisis situation, those symptoms are for another time. This account is simply for the little pesky signs that I encounter when my dosage could use a bump.

Even now and then, after almost ten years of experience with Addison's, there are days when I feel an overall sense of unwellness. Sometimes, my vision will go a bit blurry. I just feel rotten - dragging. There is not enough rest, not enough exercise, not enough steroids...not enough of anything to alleviate this kind of malaise. There might not be anything to be found that is finger-pointing wrong, not in particular, just a sense of dragging and an incredible, oppressing heaviness that can't be shaken. This is the bad business-end of Addison's disease. The hard truth is...there are times when I take extra meds, but there's nothing that can wash away the mysterious pressing upon my body. Those are the days that harsh realities in this world come to light and I admit that Addison's Disease can be unkind, but my determination can be just as formidable.

Entry #15 - Addison's for Newbies...

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.

ENTRY # 14 - The Month Before Addison's Diagnosis

OLD JOURNAL ENTRY...
August 2001: About a Month Before Receiving Testing and an Official Addison's Diagnosis

The kids have just started back in school. I've been going further downhill. God...what is wrong with me? I can't even sit up for a couple of minutes without beginning to pass out. I'm watching life pass me by. Somewhere, there is a cork in my body that has been pulled and my life-force is slowly draining out, bit by bit. No one can find the pulled plug so it can be re-corked, but I sure do feel it missing. Forget driving; forget working; forget making dinner or doing the dishes or folding laundry or playing the piano or having lunch with a friend...forget everything mundane, normal and everything that is "me."

Above all, I mourn to just be a healthy mommy again. I don't miss the money from being unable to work, even though we desperately need it; I don't miss having a clean house...I miss the little things like getting up with my girls and making their lunches, driving them to school and being completely present in mind and body. I wake up with them, but my body won't let me sit, stand, walk and do "mommy" things. They look at me and do not even ask for anything because they are so scared. I can see it plainly in their little faces. I want to reassure them, but the truth is written all over my body and my sudden inabilities. What kind of guarantees can I make to them? Should I say, "Don't worry; go to school and I'll be here when you get home...Mommy will be fine." Should I lie? What if that doesn't happen? God forbid...I do not want to die a liar.

I am devastated. Besides me...Who can be a mommy to my daughters? Who else pushed them out of their body? Who nursed them at the breast so that they could grow up to be beautiful and strong? Were my antibodies worth forgoing the formula? Obviously, I am flawed. Who will read Ms. Piggly Wiggly to them? Who will listen to all their stories about all those "stupid" boys that I know are secret crushes? Who will wrap my children in their arms and provide that Mommy-Softness? I am that mommy. I am here!! Somewhere inside all of this mush that used to be a working, strong body...I am being buried alive! Yes, I am lying here, barely able to move, but I am still their mommy.

Truthfully, I am SICK and TIRED of lying here. It's been a couple of months now. I've not even driven in over two months. If I can't stay conscious, it's just not possible. I can't force myself to remain conscious; lives would definitely be in danger. So far, there have been at least two dozen trips to various doctors and no one has an answer. Where are the answers? Where is my magical test? Maybe I just need a vitamin of some sort.

The latest creative diagnosis I've received is the M.S. diagnosis. The neurologist in downtown Houston's medical center told me that I PROBABLY have M.S., but that it is perplexing because it wouldn't cause the symptoms I now experience. The MRI is clear of any lesions - the brain and spinal cord look decent. Still, he said there is no definitive test for M.S. That stinks. I don't think I have M.S., but I know it'd be an easy answer for these doctors and they'd be finally rid of me. I keep reappearing. Still desperate. Dr. Chairman of the Neurology Department stared at me and said, "Your symptoms are above and beyond those with M.S." He continues, "I won't chart you as having M.S., but I am strongly concluding this to be your problem." My mother is sitting next to me. We look at each other in confusion. So, I stare back at Dr. Neurology in disbelief and ask, "You don't want to CHART me as having M.S.? That means you are not convinced, so, I ask again, WHAT IS WRONG WITH ME?" He shakes his head, says he is sorry for the news and walks out. My mom and I now must figure out how to get me back home again. These trips are definitely NOT a walk in the park, especially since I cannot walk but a few steps any longer.

Doctor after doctor we see. My husband has no more time available to take off work because he has been forced to call in on so many days for me being so ill or in the hospital. My mother and I are together most every day. She is my ultimate hero. Many doctors say the same thing, like non-thinking puppets, I constantly hear the same conclusions, "You have chronic low blood pressure and a salt deficiency. Go home and eat more salt on your food." The doctors send me back home, and I sometimes feel as if they're rolling their eyes behind my back as I struggle to walk out of the room.

So, here, in my master bedroom, I lie and wait. The t.v. drones on and I can't focus on the words. My husband drops into bed beside me each night, exhausted. He's never had to do this much around here, but he is rising to the challenge. He's always been wonderful, but I mostly took care of the house-cleaning, my own job and the girls. He is amazing and adaptable. He and my mother know the ugly truth...things are not getting better. I am really trying to appear brave and "healthy" to those who walk into the room, but I am very afraid. I avoid mirrors because my skin looks odd and my eyes have dark rings. My thick, luxurious hair is rapidly thinning. Something is very wrong. My body feels as if it wants to die; it tries to die, but I fight back. Dear God, have mercy upon me, I don't want my husband or my children to find me lifeless. I want to live. I want to be normal again.

..............................that was a barely legible journal entry from near ten years ago, before my diagnosis. About a month later, in yet another hospitalization, I discovered that I had been miraculously surviving in a prolonged state of Addisonian Crisis. If you read my blog entries, you will start to see the reasons I suspect that I did survive. At that time, I would never have imagined that things could have gotten worse, but they did. To all those who suffer with Addison's and who experience a piece of hell before diagnosis or for those who are not as fortunate as I have been...I reach out to you with deep compassion. For those of us who try to live day by day with this disease...I shout the rally call of, "Don't Give Up!!! Do your best to get through the bad days, then SAVOR, SAVOR, SAVOR the good days!!" The doctors had no answers for far too long. I cannot even believe some of the ignorance that me and my family endured. Thanks to one brilliant doctor, I did survive. That account is for later. For now, after nearly ten years of trying to hide my disease, I set aside my pride to TELL ALL OF IT so that HOPEFULLY it will help others to KEEP LIVING TOO!!!

ENTRY #13 - Beach Day

This past Saturday, we headed to Galveston for a day on the beach with family and friends. Since we would be in the Texas sun and that seems to cause stress to my body, I decide to take a bit more hydrocortisone in the morning. I've gone from a 10mg barely-get-me-by daily dosage to 15mg per day to 20mg total per day (split 15 in am and 5 in pm). As usual, it feels good to be horizontal. Having less days with tremendous gravity pressing in on me is fairly nice.

I told my husband, "Just like most people with meds for depression, etc., I take my dosage, feel stronger, and suddenly, I think I can magically reduce the dosage. It never works. TEN YEARS of trying and it doesn't work."

Somehow, connecting with other people who have this disease has been beyond-enlightening. I can't run for the door quite as easily. Their own descriptions of personal episodes with Addison's disease sure sound as if I am in the room with them. It is TOO FAMILIAR. It is a health mirror. Meeting "my own kind" sure has been a big dose of reality.

I guess the doctors and their extensive testing from long ago are still correct: I have Addison's.

ENTRY #12 - ADDISON'S & DENIAL

Short Description of Denial: A time of truths staring you in the face or shaking the heck out of you to get your attention, yet you keep walking away.

For a few weeks, I've had the typical Addison's shout-out of extreme nausea, body cramps, not-typical-for-me diarrhea and roller coaster blood-pressure readings. One day I'm up and bouncing around...ready to tackle the world, but the next day finds me lying on my back as frustrated as hell...unable to command my body to do as I wish. Those days are LONG.

In the past few weeks, I've found myself having too many of these days flat on my back, Over and over, I've forced myself to stare at that bottle of little white pills. These pills that the local pharmacist doesn't even keep on hand in quantities sufficient to fill my own "little" monthly prescription. I tell the pharmacist, "Keep this on hand; I will need a new refill every single month." This mass quantity of steroids prescribed monthly is just for me. My hydrocortisone.

I have a love/hate relationship with my medication. I can't live without it, but I struggle to continue living after requiring it every day of my life for nearly ten years. After my neck suddenly collapsed in 2008 and the fracture nearly cut off all but a pin-hole of spinal fluid, I have learned to be leery of my steroid-dependent state. It made my bones start to gel. How do I rebel against this state of existence? Where is the holistic approach for our condition? Ha! That is the joke. There isn't one. You be thankful for your meds and be glad to live another day...THAT is your holistic approach!! If you have Addison's, you know, those are our oxygen pills. After my neck collapsed, I was double-bolted, double-screwed (yaa-yaa-funny), double-plated, cadaver-bone restructured and I now have 12 screws on metal plates holding my neck together from front to back. The hair shaved off the back of my head for the five-inch incision was a minimal blip on my radar. The scar in the front of my neck is more rock-star noticeable. If someone sees my scars and is brave enough to ask about them, I put on a straight face and say in all seriousness, "It's from my bull-riding days; those horns will tear you to pieces. That bull horn through the neck ended my career..." As a Texan, they often believe me. My daughters especially like this angle. It's more exciting that the unknown "Addison's Complication," blurry-eyed account. Of course, I have creative answers that have been tried and appreciated by my loved ones. Some of these are not appropriate to mention.

So, yes, I see my meds as a blessing and a curse. Take it day by day. That's how I was told to approach life after the Addison's diagnosis. Still, lately, something is not right in my body a lot of days. Those pills might be my dreaded answer. Instead of my usual, barely-get-by-dosage of 10mg per day, I have recently been forced to double it to 20mg per day. Shudder.

Within 24-hours of my first double-dose, I am feeling horizontal again. That's always a great sign. The extreme cramping in my back and abdomen subsides...I'm embarrassed to even admit how long I endured those pains out of stubborn character. I didn't want to increase my steroids. But, it seems to be the trick. I'd never make a good illicit drug addict; I am too knowledgeable about today's actions affecting our tomorrows. I kind of like having tomorrows. However, I am realizing, after nearly ten years, that if I don't take enough meds TODAY, I will be guaranteed to NOT see tomorrow.

This morning, I again make friends with my necessary enemy. With a slight feeling of defeat, I pour out about four to five pills into my hand that are 5mg each of Hydrocortisone, and I pop them into my mouth with sweet Texas tea. Swallow...I know that the denial of today will cease, but that requires the denial of my future. Maybe, I am starting to face that my denial can also be a triumph.