# 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 planet...no 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.

#91 - Is the Temperature Tolerable?

Since I have battled Addison's disease...a constant battle since it impacts every area of my life...I have found that I must be very pro-active with being exposed to temperature changes.

During my Pre-Addison's days, I could spend days at the beach and be happy in the sun and in the heat. Nowadays, I am unable to hardly walk outside where a blast of heat can literally make me weak, mushy, and as if I will collapse. My body simply cannot tolerate high temperatures any longer.

Going to the beach is no longer any fun if the heat makes you feel like you have the flu for the following few days. And getting a sunburn with this disease? The constant stress of the body having to deal with skin that is red and hurting is not a good thing for someone with Addison's.

Of course, a warm, breezy day would be a delight, but here in Texas, the past few months have given us too many days in the triple digits and those days are dreaded for most of us, but especially those of us with Addison's. We've learned to avoid the things that make us feel like crap and high temperatures are a problem-maker in my world, so I avoid the high heat. This means that I had to stay indoors nearly every day...only going out during the early morning hours or in the late evening. Which was not unusual when compared to my fellow Texans, turns out that many people in Texas were avoiding this miserable heat streak.

However, we are now experiencing pleasant temperatures and it is rejuvenating. Having the freedom to come and go outside, as I please, in mild temperatures if freeing. My body is happy and eager to savor these days while they last.

Just as I cannot take a hot day or a very cold day, the same goes for bath time. Before Addison's, I loved taking hot, hot, hot baths. The kind of hot bath that you could barely sit into because the steam burned you before the water ever touched your skin. I liked it hot. I miss those soaking baths that made my muscles feel like melted rubber bands of delicious relaxation. These days, I mostly take showers in warm water...not too hot, not too cold, but just-right temperatures to not stress my body into problems with my Addison's disease.

I have friends all over the world. Some of them are already battling cold weather. It's amazing to me as I sit here in my Texas residence and know that our winter is still a good distance away from being a reality. However, just as the heat makes me sick, the cold, cold weather can create similar problems with my Addison's disease. Any great change in temperature is simply a no-no with proper management of this disease. I don't just get cold and shiver with low temperatures, I shiver, become lethargic and feel the blood pressure start to sink and Uh Oh...there's trouble. Popping more HC is not always the proper route...sometimes you must learn to avoid the situations that would require you to increase the steroids. So, I avoid harsh cold weather.

This year, I plan on getting a new electric blanket to take the edge off the nights when I am literally frozen in place and unable to even speak because I am a tight mess of locked muscles. I've found that having an electric blanket ready to combat the chills is a big help during the hard cold months.

Temperature hardships are not to be taken lightly if you are trying to keep your Addison's disease regulated. You may not have to avoid it, but to decrease your chance of suffering through hard, sharp temperature difficulties might be helpful in your disease management.

Still, I enjoy a day at the beach...as long as it's not 105 degrees, and I enjoy playing in the snow, as long as the wind is not biting through my clothes...it's all about using our intelligence and knowing what is best for our bodies so that we can enjoy as many strong days as possible.

And this morning here in Texas has been delightful. So far, I've let the chickens out of the coop, fed them, let the dogs run around, and I cleaned the chicken nests in the coop of their mess. Now, I'm ready for more eggs to be laid in the clean nests and that means delicious omelets this weekend. Omelets taste good in any kind of weather, that's for sure.

#87 - My Slight and Hard-Core Addison's Symptoms

I have decided to try to explain my Addison's symptoms with details. I realized that I have two sets of symptoms...early warning signs and severe symptoms of an actual full-blown crisis. Each person may have different symptoms, but I wanted to share my own, especially since I've discovered other Addison buddies relate to my personal experiences with going into a crisis.

If you've not suffered an Adrenal Insufficiency/Addison's Crisis on a serious level, I hope you never will and there's a chance you might live a long life without ever experiencing a crisis, but you need to recognize the difference between the warning signs of an impending crisis so you can start the battle against it and so you can know when you are just going to need to trust others to get you through the worst so you can have your second chance.

Subtle Symptoms might include:

1.  Slight Stumbles:  I am very irritated when I stumble. It is usually a small stumble, such as the tip of my foot catching the tile at the grout line, which is nearly non-existent, but I guess my feet are dragging more than I realize. It took me a while to figure out that this was one of the very early signs of my body needing more Hydrocortisone, fast. If I am not aware, the next step might mean a fall.

2.  Double Vision: I will usually have a couple of days of this symptom to where I see double and triple, it's another warning symptom or a sign that I've over-done things and need extra meds and more fluids.

3.  Shaking:  Since I am susceptible to low blood sugar and many Addisonians will have dips in their blood sugar, I can get very shaky without much notice. The problem with this symptom as an Addisonian is that it taxes your system and increases your need for more Hydrocortisone.

4.  Feeling Sluggish:  Sometimes it feels as if my body is a lead weight and it is difficult to move each limb. The danger with this symptom is that it is most often means that my body is beginning to come down with a viral or bacterial infection of some sort. If I start feeling worn down on a marked level, I double my meds and wait to see what it is that I've caught...usually a cold. If needed, I get started on a round of anti-biotics.

5.  Racing Heartbeat:  Addison's has officially given me the side issue having regular tachycardia. If something happens, even a scare or an angry moment when you normally have a raised heartbeat, the problem is...my heartrate will not come down with time or with taking some deep breaths. The heartrate has no signals in my body (cortisol/adrenaline) that will prompt it to slow down. I have a beta blocker that is prescribed for this side effect of Addison's and it helps a lot, but I must be careful because too much of this medicine can bring my blood pressure too low and that puts me between a rock and a hard place when I'm enduring a racing heartrate.

6.  Nausea - Stomach / Back Cramps:  For me, these are frequent symptoms that I must battle and that are a part of this disease. I don't have any problem keep on weight because I absolutely REFUSE to vomit, unless it's out of my control. I actually work to keep extra weight on me because I've lost 18 pounds in less than a week's stay in the hospital. I'll stay a little plump because I've experience the wasting syndrome due to Addison's first-hand. It was scary. For nausea, I take Zolfran, a miracle drug. I don't take it unless my nauseousness gets unbearable.

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Several times I have experienced the darkness of a full Addisonian Crisis, and I have been in this serious life-threatening position several times simply because my body had become VERY ILL with Addison's before I was diagnosed; therefore, it took a long time to get stabilized.

Also, I've had other surgeries, such as cervical spine reconstruction that has left me with metal plates, screws and bolts that sometimes rub against the tissue in which it's enclosed and the ends of the screws sometime visibly press against my skin. Of course, this means there is swelling, pain, and stress upon my body which is NOT a good situation for a person with Addison's Disease. If you have complications that aggravate your Adrenal Insufficiency condition, try to be aware of these so you can be prepared as they create trouble. You can't stop these things from happening, but you can be prepared to react faster when they occur.

It takes some meaty experience to learn how your body operates with severe Adrenal problems. My adrenals are shot...they are withered little bits of glands taking up space in my body, not earning their keep. These glands are necessary for a person to live. In the not too distant past, this disease meant imminent death. Today, we have synthetic replacement, but the meds themselves can cause serious complications over time.

This disease is not to be taken lightly. As for replacement therapy, my synthetic replacement must be perfectly administered for me to not have problems and this is not always possible. Perfection with our bodies is a dream-state. But, we can be on a schedule, take our meds as required, but the trick is to recognize additional symptoms that you are in trouble before you are too far gone and unable to do anything about it yourself.

During a FULL crisis, I experience these symptoms:

1.  Extreme weakness and lethargy: I can barely hold my eyes open because my blood pressure is dipping to the low point of barely being able to be registered by medical personnel.

2.  Increased Heartrate: As my blood pressure falls, my heart rate usually increases significantly because it's trying to get blood pumping through the vessels that are weakly moving the blood along.

3.  Slurring:  As an Addison's Crisis is well underway, I may be able to initially say, "I'm in trouble, get my meds," or "I am not doing well." If someone is around, I at least try to alert them to my oncoming symptoms before I'm unable to communicate.

4.  Dizziness:  This kind of goes with the lethargy. But, I can first experience a huge wave of dizziness that doesn't go away, then everything else follows. These are dangerous moments because they put me immediately into a position of not being able to walk, talk, etc., so I cannot express my dire situation to others who think I'm simply taking a nap. It can be extremely frustrating since you'd like to scream out that you're in trouble.

5.  Gasping for air:  This symptom comes after I am in such bad trouble that I am beginning to have moments that cause hospital monitors to register a Code Blue. The air seems to exit the lungs and I literally cannot draw in another breath without waiting an excruciating long period of time, thinking that this is it, I can't breathe, and I struggle terribly. Fortunately, I've been given multiple second-chances...pure miracles. I am a fighter, but I don't know if that really helps you to live longer, sometimes it's just not our time to go yet. Regardless, for this symptom, you do NOT want to hit this stage.

By the time I've hit severe crisis symptoms, I am beyond being nauseated. There are more pressing symptoms that take charge of my body. I remain coherent for a long time, usually even as my body is unable to respond or to move as I want it to. It's like you are trapped, but a person living with someone with Addison's should be VERY AWARE that the person going into an Addisonian Crisis may look unconscious, but they might very well be fully able to hear everything you are saying and to hear all that is going on around them.

After having my husband was forced to call 911 a few times and after I've been in this state of going comatose, I would hear all of the hustle and bustle around me, even the paramedics voices sounding alarmed as they realized my vitals were failing and I could not tell them that I could hear everything. I wanted them to still keep me posted...to TELL ME what they were doing to me, if possible, and to remember that I was still in there, somewhere.

At home, most often, I am aware enough when I'm going downhill to quickly get a double dose into my system as I am headed into a quick Addisonian downfall. I actually begin with taking my pills and I sit down, relax into the symptoms instead of fighting them and the medicine kicks in to help pull me out of it. I've done this so many times that it's not possible to count how often I'd been in this situation. My doctor tells me that my body makes it extremely difficult to regulate Addison's disease and we all know, if you have this condition, there is NO MONITOR that will tell you your levels in advance so you can take medicine more leisurely. For us, we must KNOW our bodies and learn to recognize the symptoms approaching.

It's been a few years since I've been in the hospital because of an Addisonian Crisis. Now, I've been hospitalized for other conditions and have had surgeries that have CREATED an Addison's issue. Yes, I'll be IN THE HOSPITAL and my file will be marked largely with this condition, and I often find that medical staff still does not really grasp the concept of how fast an Addisonian can crash and hit the cardio-pulmonary shock stage. Most medical personnel have never seen an Addisonian crisis in action, so they can't imagine this happening except to a traumatically injured victim. It doesn't seem possible for it to happen to a patient who looks fairly okay, for the moment. For an Addisonian, that can change in a snap. You feel "funny" one moment and the next you are unconscious and dying. For us, it happens. I have been that patient who has provided an education for many doctors and residents.

I've been in the hospital, in the middle of an Addison's Crisis and the head Endocrinologist rushes his residents to my room STAT and they all stand at the foot of my hospital bed observing me in a state worse than a quadra-pelagic as I am unable to move my body, I can't sit up, I'm slumping over in the bed because the nursing staff has not even recognized how quickly I've deteriorated; my body is so far gone that I am unable to communicate. Worse, the rest of me, my insides, all of it is slowing down and about to call it quits.

The good part about Addison's, unlike the quara-pelagic that never has a second-chance, is that you have a chance to resume your ability to sit, stand, talk, and walk. That is...IF you live through the crisis.

They monitor my disappearing vitals, each recording it on their own tablet, then as they administer the injection, they stand and watch over the next 5-10 minutes as I am able to slowly pull myself back up into an upright sitting position with stabilizing vitals improving drastically, quickly before their eyes, and I'm able to finally talk, so I say, "Thank you, I really needed that." Before they leave my room, I'm taking sips of my water and am chatting with them about their questions.

That endocrinologist said to his residents, "That'll probably be first and last Addisonian Crisis of that severity that you'll ever see, but at least you'll have a better chance to recognize it."

Thank God I had an endocrinologist on staff who recognized the danger himself because I've sadly discovered that many endocrinologists do not understand how rapidly their patient will decline. They know it can happen from textbook knowledge, but the real world experience seems to be shocking to them or as if they can't believe they actually have an Addison's patient on their hands.

I've had several different episodes, but this particular terrible experience is one that I had DURING my hospital stay, and my file was fully recorded about this condition. I'd actually just had a serious cardio-thoracic surgery and was in an extremely dependent state with my body chopped to bits and a rib removed. I had a huge incision across my neck/thoracic area with drain tubes coming out the top of my shoulder with the drain line running a couple of feet into my body. Disturbing.

My body was under tremendous stress. The staff handled the surgery well, but they had not handled the stress doses properly and I was, of course, already "out of it" because I had just endured major surgery. My mother was alive during this time and she was in the room as I went into an obvious Addison's Crisis ---- but we'd already been telling the nursing staff that I needed my large stress dose. The next stress dose was not properly documented to be administed in the file, so the nurse said she had to contact the doctor. Of course, this caused precious seconds to tick away with me left untreated and declining further. The nurse did not understand that this was NOT a "let me go phone the doctor" kind of moment. (I wanted to make it clear that this was NOT the nurses' fault; the doctors should have put clear instructions for stress dosing and notes of clarity about the urgency needed, especially because I'd provided all the information before surgery in my pre-admissions appointment.) But, before the day was over, she'd never forget Addison's disease and she'd be in my room as nervous as heck, visibly shaken. I felt bad for her; she told me she'd been trying to respond as calmly as possible because she actually didn't know what to do, I was the first Addison's patient she'd ever had...even as a long-time nurse in Houston's notorious Medical Center.

No stress dose arrived and I was struggling to breathe and could not hold my eyes open for more than a few seconds at a time, but I could still hear everything going on around me. I prayed. My mom actually buzzed the nurse again, "We don't think you understand how urgent this is...we need the doctor now." Still we waited.

Finally, as I began to totally lose consciousness, my mother stepped out of the hospital room, into the hall, and began to yell at the nurse (VERY OUT OF CHARACTER FOR MY MOTHER) and she was yelling, among other things, "She's going to die; you have taken too long; we're going to lose her!" My mom was in a panic. I could no longer talk or do anything. I was in the Ragdoll state of existence.

That's the point where the head endocrinologist came bursting into the room and the rest you heard already. It was proof that this disease requires an extreme pro-active stance, you can't even think that being in the care of medical professionals is enough. If you end up like me, under harsh surgical conditions and dependent on others to provide life-saving treatment, then you might be in trouble if you don't have an advocate watching over you. On this day, my mother had been my advocate. Other times, numerous times, it was my husband.

But, my health is my business. Mainly, I am the one taking care of my condition and living a good life because I've learned to recognize various symptoms. I stay aware, if I don't, I pay the price and I've learned long ago to snap to it and to not think that I could depend on the doctors to keep me healthy because they can't do it. My daily health is solely my responsibility. And I take it very seriously. Then, I keep living to the fullest, without fear, and I savor every good moment that comes my way.

#73 - Sleep; Get It!!

Sometimes we are so worn down, yet we continue to go about our business in full swing. We don't listen to our bodies. The exhaustion is pushed back and we pull every trick in the book to make ourselves more alert.

Everyone can do this, for a while. Then, you begin to really feel run down. You might even get sick and won't be able to shake the overall sense of just feeling yucky.

My youngest daughter and her friend, getting ready to go out dancing!

My grown daughters, in their 20's, have been known to think that they know everything!! They have times of going out with friends, they have too much fun, stay out too late and end up coming back home with only three hours to spare before they must be at work. A couple of days like this, they end of walking around as if they are the walking dead. Unbelievably, they will come up to me about how "sick" they feel, but they just can't figure it out. How can they feel so rotten? Well, staying out all night with your friends and then scrambling to get ready for work while you can barely hold your eyes open might be a difficult task for your body. Hmmm. Just maybe, it's a thought.

As for me, my routine is critical to my health. Since my diagnosis with Addison's disease, I've found that I cannot go long without solid sleep. But, my problem starts with severe insomnia, partly due to Addison's disease and partly due to my body being butchered so many times that it is simply out of whack. It often hurts pretty bad and this can interfere with me being able to get ample sleep. Even taking sleep medications cannot always help.

But, once I do get a good night's rest or if I do grab a two hour hard-core nap, I feel so refreshed and better able to cope with the pain. The bad part of being in pain and being exhausted is that each of those two will create a vicious cycle of downhill health. You must step in and force yourself to get a few hours extra sleep so that you can come back feeling better able to deal with the hard parts of life. Cellular repair happens while we are deep asleep and your mind gets a break while your body rests. Getting some sleep when you don't feel right is something that you must do right away; it's not up for debate.

Now, if you are feeling unwell. Go find a quiet place and take a nap. Or, you can go to bed and if possible, sleep in for as long as you can tomorrow.

My point is...sleep is hugely valuable to our daily health. Don't underestimate it. Don't play around with it. Your mental processes depend on an alert, well rested brain. Let your body delight in the gift of deep slumber and maybe you'll wake up in a bit less pain. Fight for your right to get the extra rest when needed. I'm not giving an endorsement to be lazy, I'm talking about truly listening to your body and getting a day of rest when it is needed. For some of you who are battling chronic illness, your ability to get some good sleep and nap time is exactly what keeps you going. As for me, I'm figuring out that the naps are priceless.

My youngest daughter being woke up by her best-friend.

Tonight, I hope to sleep soundly, but if I don't, I can promise that I will be doing my best to take a healing nap so that I can tackle all that life throws my way...wide awake and strong!

These two little beasts won't give us rest. The Smaller dog is

Howdy when he was a puppy and yes he was a hand-full!

Good thing, he's as awesome as can be these days.!

#33 - Good Days vs. Bad Days

This weekend, I had an incredible Saturday at my sister's house. The family gathered for a day of video gaming --- our bodies acted as the control since it was one of those new dancing games where you have to follow the dancer on the screen. We all enjoyed delicious Texas BBQ and a lot of laughs as we non-professional, out-of-shape "dancers" took our turn busting a move.

I took my turns and did my best, which was pretty pathetic, but I didn't care. It was a load of fun. My body is not always cooperative - no surprise since I am full of spare parts, but that didn't stop me from trying. I knew I'd probably pay dearly, but to dance with my 4-year old niece and to see my dad at about 65 years of age dancing better than everyone else was memorable fun.

However, my penalty began once we got home. I live just a few miles from my sister and once I got home I began itching terribly. The itching had begun earlier in the day, but I thought it was from my morning shower with a light irritating leg shave - the price of hairless-legged beauty - ha ha. I kept scratching and soon began itching all over my back and abdomen. With a bit of a shock, I discovered that I was having an allergic reaction. I'd worn capri knit pants to my sister's and didn't realize that I was still that allergic to cats - it had been about twenty years since I'd had a reaction. My sister had her cat put away, but the exposed part of my legs had been laying against areas the cat enjoys and BAM, I was steadily on my way to a full-fledged allergy attack. Of course, I increased my Hydrocortisone and my husband ran to the store to get a new bottle of Benedryl. Meanwhile, my itchy-dance had picked up pace.

Into the night I developed whelps all over my body, but the Benedryl thankfully kicked in and I fell into a fitful sleep. Waking around 5:00am Sunday morning, I did not have muscle aches, but I was wholly drained. I took my morning dose of HC and sat in the living room watching "Church," waiting for my meds to kick in. I could barely hold my head up. Leaning back in the recliner, I knew my body was struggling and figured it was because the allergy attack had zapped me. Throughout the day, I kept steadily taking more HC so I could at least walk to the bathroom and back without passing out. No matter how hard I tried to combat the overwhelming invisible weights pressing down upon me, I could not escape. My blood pressure kept plummeting. I struggled and took an extra safety precaution by setting out my injectable Solu-Cortef...just in case.

Later in the day, I realized that I probably needed Florinef since I had lost a lot of fluids the day before. My husband was looking all over for my prescription and I could not think clearly to give him direction assistance. My blood pressure had sunk so low that I was not able to even think straight. Finally, late in the day, when I was nearly ready to leave for the emergency room, I remembered where I had put the bottle. I cannot express how thankful I felt to have the medicine in my system. Within an hour, my head felt as if it were "ballooning" as my pressure steadily stabilized. Soon, I was able to walk around the house, do a load of laundry and disinfect my master bathroom. The difference was night and day.

Strangely, this was my first time to have a huge dip in my blood pressure and the inability to stabilize my condition through additional Hydrocortisone. Usually, that is enough. This time, it wasn't. I discussed this with my favorite physician yesterday and he commented that I probably am at a stage where I just need a bit more Florinef than before. I have been one of those patients who could NOT take the "recommended" dose of Florinef because it had once caused my internal pressures to increase so tremendously that even the blood vessels in my eyes burst and looked horrifying. For years, my body with Addison's required very little Florinef, except when dealing with the heat or when conducting activities that might cause dehydration faster than normal.

Regardless, I never cease to be amazed by the power of these little pills. Next time, before I begin dancing around and having too much fun, I'll take extra Florinef. Perhaps I'll retain fluid better. I had eaten a diet with extra sodium that day, but unlike before, this time it wasn't enough.

After this episode, I began thinking with sadness about all of the people who are currently suffering with this condition undiagnosed. On the other hand, treatment is still relatively new in history, so I contemplated the situation of people who had suffered with a nameless disease - having no choice other than to lay there as they became weaker and weaker, until the body gave out. Realizing the trial and error treatment of all of these patients before us...I feel so fortunate to have medicine that works like a helium tank --- filling my body with an uplifting boost, pulling me up, up and up!

Learning new lessons with Addison's never ends. Just when you think you have it figured out on a decent level, then you find that you are side-swiped with a new scenario that brings a new lesson. Needless to say, I have new prescriptions for Florinef and will have a back-up bottle ready as a precaution. My husband also now knows where the Florinef is kept and the importance of having it on hand just as we have Hydrocortisone ready during a crisis.

The great news is that having Addison's doesn't have to only mean having bad days, it can mean having a terribly bad day, but the following day can be incredible. I guess the unpredictability of the disease can be most disturbing, but I am always grateful for a good day. Today is a really good day, and I am looking forward to enjoying plenty more.

Entry #29 - Ten Years Ago - A New Life...

Just about ten years ago, after I was diagnosed with Addison's Disease, I found myself living a different life. Some people are diagnosed quickly and get medication into their system so it can function closer to how nature intended. But, there are other people out there who are lingering and very sick with Addison's - because they do not yet know they have this disease and are not getting proper treatment. And yes, there are those very unfortunate ones who do not get the proper diagnosis in time and they succumb.

I was one of those people who was hanging on the ledge for too long. My body had been surviving in Addisonian Crisis mode for so long that it was provoking me to unnatural cravings. Salt was my main craving. I began to avoid eating because it seemed the digestion process made me much worse, so I began to substitute more and more meals with cans of V8. I ate pickles like potato chips and then drank the entire jar of pickle juice. I loved peanut brittle and if I were to have a candy bar, a Payday with its salty peanuts was my first choice. Now, when I look back and see my food choices, I can clearly see that my body was desperately trying to obtain what it needed for my blood pressure to sustain life. Soon enough, there would not be enough V8's in the world to help me continue living. I needed medical intervention.

After coding in the hospital at age 33, the next day I was finally put through several tests that led to my Addison's diagnosis. Those little pills were miraculous. However, I had been sick for so long that my organs had taken a hit ---- recovery was not so easy. Sometimes, I felt as if I could run circles around my kids and still have more energy to spare, then other days I would be barely unable to lift my head off my pillow. Getting the diagnosis was one thing, but becoming stabilized was another. Still, I was in disbelief that my condition actually had a medication available that could magically help me sit upright and to stand without passing out.

However, learning to live with Addison's meant many other lessons. It would not be as simple as taking a few pills. There would be and there continues to be lessons about different bodily stressors which requires me to increase my dosage. There are times when you can't imagine an activity causing additional stress upon your body and you soon figure out that you'd better get more pills down, and fast. Life is a big lesson. The kicker is...every body is different, so one person's body may require more medications for an activity than the other person with Addison's. If you have any condition with adrenal insufficiency, you have got to do more than live IN your body, you must learn to be finely in-tuned WITH your body.

There are subtle signs that I have noticed are an indication that I must increase my meds...my vision becoming a bit blurry, my feet dragging or stumbling, getting a slight headache, feeling worn out too early in the day, body aches, etc. Over the years, I have found that I've learned to conduct an inventory of my daily abilities. Sometimes, I still miss the mark. Like many other people in their 40's, I have other awesome health conditions to consider because those can also add stress to the body and require increased meds. Don't rely on your doctor to do all of the thinking...do a lot of it yourself. Then, discuss it with your doctor. Who knows, perhaps you will encourage her to think about things she never considered. Addison's/Adrenal Insufficiency is not something that is routine, so you must be pro-active.

This weekend, I will have the honor of having a medical professional come to my house to conduct an interview for research he is doing with Addison's/Adrenal Insufficiency. The researcher works with one of the most well known hospitals in the Houston area, and when I asked why he was interested in this area of research, he outright confessed that he has an adrenal problem and he could not find sufficient research on the matter. So, he is doing something about it. He is going out of his way to drive to my house in the Bay Area - he's coming from North Houston and I live on the South side. If you know Houston, you realize that this is about an hour drive, one-way. I am impressed with his determination and his credentials are of the WOW-variety, so I know his research will be interesting.

Surely, all of us with Addison's/Adrenal Insufficiency will benefit from people actively involved in the quest to unravel mysteries with this condition because it is not cut and dry. Our bodies are ever-changing, so this condition is like a sneaky fox. However, I am on the look-out. What kind of day are you having? My feet aren't dragging, so I am not having to adjust my dosage...at least not yet...but it's only 1:30 in the afternoon. Stay focused my friends.

Entry #28 - Addison's Puzzle Pieces

For anyone who is found to have a rare and serious disease, the diagnosis is accompanied by many changes that impact every aspect of your life. I've discovered that many people are given an Addison's diagnosis only after their health has been on a steady, sharp decline. The opportunity for an earlier diagnosis was often present many times over, yet it might have been missed many times over. My own day of diagnosis came after multiple emergency room trips and hospitalizations with many tests, many of them dangerous and unwarranted. Early on, if numerous doctors would have truly listened to all of my symptoms and paid attention to certain indicators...my extremely "chronic" low blood pressure, ongoing sodium problems, severe lethargy, extreme weakness, etc., they would have had a rather fast and correct conclusion leading to an adrenal issue and proper testing sooner instead of later.

There are specific diagnostic tools and tests for patients with this condition: unfortunately, these tests are often used as a last resort. On a deeper unfortunate level, many physicians have never ordered these types of tests and probably never will. In my observation, after initially being misdiagnosed by too many doctors, I have personally found that it is rare to find a physician who is progressive enough to quickly put the puzzle pieces together. Even worse, since my diagnosis, I've informed doctors of my condition and they remain dangerously ignorant. If you have any kind of adrenal insufficiency, you must be very discerning when selecting a doctor and you must develop a heightened level of good sense. Perhaps we are living in an age with such severe information overload at the touch of a finger that we have fostered an excuse to embrace less critical thinking. I tend to think of it as a "nurtured lazy mindset." Sometimes, the answer to our problem requires creative thought processes. Today, doctors seem to have become more reliant upon routine testing and simple textbook answers instead of their own thinking processes.



One of my last trips to an emergency room in Houston's fabulous Medical Center found me sitting in a little room with a doctor holding a computerized questionnaire that provided a script for him to follow and for me to answer so he could "cover all the bases."

What????? Is this for real??????

My question is: Why do we need doctors with all of their medical training if we only need to sit before a computerized system and answer the questions presented to us on the screen? To be honest, the doctor stood before me with this little machine and he asked the questions with a monotone voice, and he appeared to be deflated, degraded and without any personality. How sad!

If you have seen the series "House," then you realize that this entire concept of finding a "thinking" doctor is striking the heart of most fans because the show's premise is becoming a foreign concept. Is your doctor truly competent enough to be thought of as being "...trained in the healing arts?" or is your doctor enjoying the white coat and stethoscope fashion show? Is your doctor focusing on your symptoms and your health or is he daydreaming of his next sportscar as you try to discuss your symptoms? Considering these obstacles, it's a good thing to find a doctor who is very good at making a difficult diagnosis and to find ANOTHER doctor who is wonderful at treating the condition you are diagnosed with having. Know the difference and you will save valuable time, money and effort. If your doctor is not listening or is trying to affix a quick label on your head that you feel is wrong, be ready to challenge his reasoning. Your life may depend on it.

And, once you find a doctor who shows outward signs of actually putting the mind to work, then you might want to stick with him. Good doctors are not necessarily affiliated with a Gucci facility or hospital name, that incredible doctor with awesome cognitive abilities might be tucked inside your own hometown inside his little family practice.

ENTRY #17 - ADDISON'S & INTERNAL FRIENDLY FIRE

(Reprinted "Page" of Blog as Entry)

First, I want to make it clear, that I am not a doctor...Thank God. I am not a medical professional and this is a blog for creative writing and was started as a means to reach out to others with adrenal disorders so we can relate and draw strength from each other. All of us have very unique struggles, but if you are suffering with Addison's or Adrenal Insufficiency...you are not alone. Keep reaching out and letting others reach out to you. I've struggled with this area intensely, so I can give voice to it.


Even though I'm not a physician, I do have vast experience with Addison's, multiple surgeries, injuries, and illnesses over the past ten years that would have created huge obstacles for anyone let alone someone with adrenal issues. I am blessed to be alive. That will be on other blogs to be posted very soon. Having Addison's is not something to relish, but it is my path in life. If you have a medical condition...make sure to get medical help by seeing a doctor. But, support systems can and should be a part of your treatment because you have psychological aspects to adrenal conditions that are very unique and understood by very few. As for your physical health, for an endocrine disorder, it's usually great to see an Endocrinologist. Your own research, questioning and gut instinct might be pivotal to your health. With valid reasoning, I am PERSONALLY leery of physicians and cynical from my many experiences, but I also know that there are INCREDIBLE doctors out there who can expertly treat adrenal conditions. Currently, I have a few incredible doctors I visit regularly, but the "incredible" part followed years of trial and error. My interviewing skills have been honed over the past decade. This became a life-necessity.

Sidetip - a PERSONAL bit of advice I have that could be a great resource for finding an incredible doctor is to talk with the nurses. Value their opinion and they will value you. Nurses are our advocate. Make the best use of your time during doctor appointments. Getting your blood pressure taken? Start the friendly straight-forward conversation and ask, "If your life or your child's life were in danger...on a PERSONAL level...which doctor here would you most wish to see so you could better your chances of survival?" Make it clear that you are asking about their own PERSONAL preference, not professional guidance. Help get them off the hook by reassuring them of the mutual respect for privacy and for their valued personal opinion. Not sure about this route? Just so you know, it has served me well. Nurses can be your ally. You might be surprised at some of the answers you'll get - even if by agreed upon loud and clear signals - body language. Try to ask a few nurses so you can get more personal opinions to help with your decision. Another good tip, first make sure the nurse is not the doctor's wife.

Personally, in a way, after the past decade of experience with this condition...I am freer. I no longer hit the books to research this disease in detail; I did that for several years and am past that phase. The below information is my own imperfect summary of this condition. But, these days, I am hitting the emotional nail on the head as I tackle the personal traumas that any adrenal insufficiency battle creates. If you have minimal impact from your adrenal issues, that is great. Not everyone is so fortunate. Not all roads are smooth. My writing focus is now often about my body and mind in a non-technical way; about my family reactions to different phases in this disease, about changed friendships, daily adaptations and the elephant in the room some people will try to avoid seeing at all costs.

Becoming deathly ill and desperate for healing as you go from doctor to doctor is not easy. But, I know others are going through the same thing. I got a diagnosis nearly ten years ago in 2001; in my final hour of need, I was rescued. My writing is mainly an emotional release and a reach-out. After nearly a decade of not being ready to talk about my experiences, I am now sharing, with you.

As for the technical part of Addison's - here is the non-professional, yet highly experienced version of what Addison's means ----- and yes ----- this is the "short" version of a very complicated issue. Good luck my friends and let's always share our wisdom. If you have an easier way of explaining this detailed mess or want to share your own story, I encourage you to do so. Interaction between all of us is very important.

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Be prepared...Addison's may also be referred to as Primary Addison's, Adrenal Insufficiency or Hypocortisolism. And don't be fooled by the terms Secondary Addison's or Secondary Adrenal Insufficiency because these are just as deadly as the "Primary" version. Every form of adrenal insufficiency is potentially life-threatening. All of these are to be taken seriously. I am sure I have omitted other defining terms. Please forgive me and educate me. If you are brave enough to tackle the below in your own search, I can relate and I say, "God Bless You" and help you find the answers you need. I won't lie; it is not an easy journey.

BASICS of ADRENAL GLANDS

A normal person has two adrenal glands. Only two. Each gland is located above the each kidney. The adrenals are relatively small and each adrenal gland has two main structures.

The two structures within each adrenal gland are:
1) The Adrenal Cortex which is the outer perimeter of the adrenal gland, and
2) The Medulla which is the inner part, the center of the adrenal gland. Just remember, Medulla...Middle.

The Adrenal Medulla is the inner part/center part of the adrenal gland and is in charge of secreting epinephrine (also called "adrenaline"), Norephinephrine (also called noradrenaline) and a small amount of dopamine, collectively, these are called "Catecholamines." The medulla of the adrenal gland secretes these catecholamines - which are hormones released in response to stress. Adrenaline cannot be produced elsewhere in the body - it is a hormone that is only produced by the adrenal glands from the amino acids. That is partially why adrenal gland problems are so critical to your health.

Easier to understand, "Catecholamines" are the "Fight or Flight" hormones most of us had heard about. If you have Addison's disease or any kind of adrenal insufficiency, you are probably well aware of these hormones, even if you didn't know the actual word for them. You already understand. If you don't like human anatomy and physiology or any kind of biology, take a break and come back, I'll be waiting patiently.

The Adrenal Cortex is the outer perimeter for the adrenal gland. Here we have cortisol and aldosterone. It is critical to know that cortisol works in cooperation with epinephrine/adrenaline as a response to stress. But, the adrenal cortex doesn't only include production of aldosterone and cortisol; it's also a "secondary" site for Androgen (sex hormones) synthesis. However, many Addisonian's do not need replacement therapy for testosterone because even though the adrenals produce adrenaline/epinephrine and cortisol, etc., only in the adrenal glands, the sex hormones do NOT rely on the adrenal glands as the only site for their production. The adrenal cortex produce "supplementary" Androgens, so that is not a typical life-threatening area of concern with Addison's or adrenal insufficiency. You can have Addison's and still have plenty of testosterone. In fact, speaking for women, we have three areas of Androgen production, but you will not have another source of production for natural cortisol from the adrenal cortex to work with adrenaline/epinephrine, etc., as the adrenal glands are the only factory for those life-sustaining hormones.

Adrenaline literally means "on the kidney" and this word has Latin roots that I won't go into. Anyway, we desperately need adrenaline and its buddies for survival. Adrenaline and Epinephrine are interchangeable, chemically, they mean the same thing. In this respect, I hope you can understand my personal issue with this terminology...I do not use the word "epinephrine" because it simply reminds me of my brother's allergy to bees; I can't shake that mental image. But, we with Addison's are lacking Adrenaline and Cortisol participation. This is not good. So, even though the medical community actually prefers we use the word "epinephrine" over "adrenaline" to describe this particular hormone (back to the bees) I'd rather use the word "adrenaline" - same difference, my particular writing choice. But, remember, I did mention that cortisol and adrenaline/epinephrine must work in cooperation for a proper stress response. Onward...I'm not finished with my "Brain dump." The information swirls around.

An "Adrenaline Dump" is how ordinary people refer to the body’s natural stress response. This term refers to a collective hormone release and amazing body feats. Since I am from Texas, I'll use this example...If you have a raging bull charging your direction and if you have good sense to ponder the impending danger, you will likely have an adrenaline dump. It is your body's way of gathering heightened awareness to prepare for battle. An "adrenaline dump" is actually a cocktail of life-saving hormones and these provide your muscles with the extra UMPH to MOVE ALONG QUICKLY and to possibly FIGHT. After ten years of learning to greatly control this adrenaline dump response...I still remember this sensation. Years ago, my sweetheart and I would ride the Texas Cyclone at Astroworld - a rickety, wood roller-coaster that was fast, loud, and terrifying; those adrenaline dumps were awesome. Now...not so much.

That "Fight or Flight" stress response needs hormones, including adrenaline and cortisol to work. The body produces corticosteroids according to individual need, but they don't work alone. The adrenal glands have two structures for a reason...they work as a cohesive unit...in conjunction with the rest of the body and the brain. After all, hormone participation is a key concept. Getting too technical. So............these hormones must mix and mingle, they sometimes bump into one another and say, "Hey, You're it!! I'm passing the torch; your turn!" Therefore, if one of the hormones is slacking, the others will sometimes respond in kind. Worse kind of chain reaction --- No reaction.

Analogy: bacon has fat. You cannot have real bacon without real fat. I'm going all Emeril Lagasse on you now. Yes, in Texas, we cook with bacon fat. Back to the drudgery: You cannot have a real "Adrenaline dump" without special hormonal ingredients. Cortisol is a focus word, but not the entire book. If you don't have cortisol produced by the adrenal cortex, then you won't have a life-saving "adrenaline dump" that defines the "Fight or Flight" response...with insufficient cortisol production, you would only have the "Flight" side of the equation; there is no "Fight" available and you will require synthetic replacement.

Adrenal hormones, in combination, have a serious purpose which is to keep us functioning through stressful times with our body. These hormones are especially useful during an emergency because they increase our heart-rate to get the blood pumping; they increase our blood pressure to allow for all that extra blood pumping; they constrict our blood vessels to hopefully help us keep the blood pumping INSIDE our vessels; the hormone cocktail dilates our air passages to get the oxygen flowing; it gives us tunnel vision so we can focus with intensity; shuts down our hearing so we don't have outside distractions; slows digestion so our body can use that energy elsewhere and these hormones do a whole lot of other things that cannot be explained so easily.

Far down in my account, I must make very honorable mention of the hormone Aldosterone which is produced by the adrenal cortex - remember? This is the outer layer along the perimeter of the adrenal gland. The lack of this little hormone in my body threatened deadly havoc. This particular hormone is very critical to our existence because it also helps to control our blood pressure as well as salt and potassium levels. Sounds rather harmless, but don't try it at home. Aldosterone can be replaced with Florinef, but your body will go out of whack beyond description without aldosterone. Of course, most of the adrenal gland hormones are beyond critical to our existence. If they don't work properly, it is hopeful you will get a correct diagnosis and will then likely be put on medications for synthetic replacement for a lifetime. Thank God we do have researchers and doctors at our disposal. I only wish all doctors realized that they can be better doctors by not always SOUNDING like doctors. Does that make sense? Sometimes, especially when very ill, we need plain talk. Unfortunately, most of us are blind-sided.

As for cortisol - the amount you produce is controlled by another hormone called: Adreno-cortico-trophic-hormone = ACTH. This is part of the mix and mingle and bumping scenario with hormones. ACTH is made in the pituitary gland, just under the brain. If you need surgery on the pituitary, they usually go through the roof of the mouth or through the nose - hope that provides a decent geographical location. ACTH travels through the body's pipeline, better known as the "bloodstream" and it goes to the adrenal glands where it triggers the adrenal glands to make cortisol. Mix, mingle, and bump.

I am almost finished with this shallow, superficial, non-professional approach of providing layman’s wording for adrenal insufficiency. If you are afflicted, an ACTH Stimulation Test could confirm the diagnosis of Addison's. If you have Addison's, the ACTH stimulation test will show that you do not have a rise in blood cortisol following the injections. The stimulation test is an attempt to synthetically get a response from the adrenal glands. There are indepth values that go with the results, but that's going back into a technical side that I am now trying to move away from --- unsuccessfully as you can see. Within hours after I officially coded in the hospital, I had this ACTH Stimulation test. I had also had an A.M. Cortisol and aldosterone blood test among other tests too numerous to mention. And BINGO - we have a winner for the brilliant doctor who figured out my condition. A cardiologist. Finally.

With typical Addison's, usually, the adrenal cortex is affected and the medulla is ok. Weird. However, even with only the cortex of the adrenals affected, the participation for a natural response to stress is over. Adrenaline dumps are depleted. You'll now need medications to replace hormones that would've naturally been dumped into your bloodstream so you could survive daily living AND emergency stressors upon the body. There can be a multitude of reasons behind a person developing Addison's, but most often, it is caused by an auto-immune disorder. Often, the cause of your developing Addison's disease will remain a mystery.

If you have Addison's due to a suspected or confirmed auto-immune disorder, then, for some reason, your body began to see your adrenal cortex, the outer layer of the gland, as an enemy worthy of destruction. Since the adrenal cortex is mistakenly seen as a dangerous invader, the body's defense system sends out the sharp-shooting troops to attack and destroy. Little does the body system know, this onslaught is Friendly Fire. The body turns on itself in an effort to do misguided good. I am a product of internal friendly fire.

August 2010. Genetics apparent in the hair & eyes.
Ruff, Ruff. These are the sweet moments to savor.
Of course, my hubby & kids make life worthwhile as well!