#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.!

#72 - Count Your Blessings

There are days when things just don't seem to go right. There are times when we feel overwhelmed. Everyone has difficulties, sooner or later, everyone encounters problems of some sort.

But, if you start to feel too weighed down by your circumstances, then it really might be beneficial for your mental and emotional state to truly count your blessings. It's an old saying that sticks around for a reason. When you are jumping hurdle after hurdle with no end and sight and exhaustion is kicking in, then it might be time to let the hurdles fall and start focusing on your blessings.

If things are so bad that you can't even think straight to consider your blessings, then get out a sheet of paper and start at the top --- look around and find something that is a blessing. Go from there. Get on a roll. Counting your blessings can include seemingly "meaningless" things that are actually deserving to be on your list. So many little blessings can add up significantly.

So, when life appears to be a chaotic mess that has less hope and more trouble, start counting the blessings. Make your own circumstances be transformed.

I think this is why I always feel blessed. Even in the midst of my worst moments, I might take a while to have a royal breakdown, but then I start to pick myself up while counting my every little detail in life deserving of thanksgiving. It may be the wind blowing a tree in the distance and the swaying is so beautiful and captivating that it takes me away from my reality. It might be my goofy dog waking me with his huge paw placed gently on my shoulder. It may be the voice of my daughter just calling to say, "Hey Mom." And, I am so thankful that I have a husband who loves me and who admires my strength. If he only knew...I draw so much of it from his own strength.

If you are down, don't wallow. Okay, wallow for a while, but pull yourself out of it after a while so you can exit wallow-land. It's not fun to stay there for long. As my mother used to tell me, "There is ALWAYS something to be thankful for, so start being thankful!" She was right. Enjoy the little things, be amazed by the big things and to everything in between, be looking for the blessings --- they are there waiting to be noticed.

#71 - Which Dr is for Me?

Choosing your doctor is a very personal decision, yet also a business decision. Sometimes, you might find a doctor with the label of "Endocrinologist" but he has nothing more than textbook brush-up knowledge about Addison's disease.

So often, you will find Endocrinologists involved in a practice mostly involving diabetes. For those who have Addison's, this is not sufficient. You need a doctor who takes an interest in your disease so that they are able to provide the best in foundation care and who will try to understand the health hurdles of a person with this disease. If you get a doctor who seems disinterested, overwhelmed, or full of misinformation...then it is time to move forward and out of that office.

You only have one life, don't take chances.

Additionally, you'll need an informed treating doctor to have on hand when times get rough. If you have a physician who is mediocre, then you just might be out of luck when you most need it. The right doctor is the one who truly understands the life-threatening seriousness that an Addison's patient confronts when there is a stressor.

Many of us need to change our way of thinking toward doctors. Too many of us automatically put every doctor in an elevated position, we see them on a pedestal that might be undeserved. I say, kick the pedestal away and put that doctor on even ground with you. They are in front of you because you have hired them to do a job...just like the rest of us are expected to do our jobs in order to be paid, so are they. Even if you are not working, even if you are on disability, you have a choice...remind them that you still have freedom to take your business elsewhere.

At this point in my life, I see a doctor as a body-mechanic. Just as machinery-mechanics can be good or bad, the same goes for those in the body-health business. Some doctors really are clueless, they might have white-coat ego and are not really interested in doing the dirty business of doctoring. Some are thoughtless and others are simply incapable of doing their job. To be fair, there are also incredible doctors who admit to being failable, yet they have a natural passion for life-long learning and a real concern to provide the best care they can possible give to their patients.

Finding a good doctor is not as easy as simply making an appointment and showing up with blind trust that you will be in good hands. Would you pick a babysitter out of a hundred names in the phone book and go drop your kids off in their care? How many things could go wrong with a person who carries the label of "babysitter?" What about that classic car that needs a fresh paint job? Would you randomly select a auto-body-detail shop and gladly drop off the car with the keys, then hope for the best? Why would our health...our very LIFE be any less important than how we approach other areas in our life? What things must you expect before you "hire out" for any ordinary job?

Now, put having a rare disease into this equation and you will find the availability of a "good" doctor to be greatly reduced. This is where your own pro-activity is critical to your own health. Of course, if you are seriously ill, you are not as able to do your homework as if you were well-abled with the strength to sit behind a computer and do extra research. Recruiting a "friend" is sometimes easier said than done. A hard fact is that we may have times when our illness forces us to go with the flow and hope for the best. However, as soon as you are able...do your part to challenge, to inform and to increase the quality of every moment spent with that body-mechanic wearing a white coat.

Just because a person goes to medical school, does not mean they are automatically meant to be a doctor in your area of disease. If you have truly received below sub-standard care, even low level care that you know could've put your life in jeopardy, then you need to speak up and demand a refund for services NOT rendered, you should verbally make your disappointment known (respectfully) and be sure to follow it up with the same in writing with a note that the letter is to be permanently placed in your medical file as part of the official record.

Again, you're not looking for a miracle worker, but you do need a physician who comprehends the basics of Addison's...the need for an immediate prescription for an emergency injection, the need for prescriptions for your daily medications with the understanding that a tad more per month should be added to your daily prescription for stress-dosing so it is automatically available, and the understanding that regular blood work should be ordered. Foundation issues should be covered without grief. It is part of treating a patient with Addison's disease.

Personally, I've found my local internal medicine doctor to be my best source of care, far beyond my endocrinologist. I have seen about a dozen endocrinologists and most have sadly lacked skills to treat an Addison's patient. But, I know good ones are out there! I have had several tell me that I did not need to worry about keeping an injection on me at all times because I live so close to many different hospitals. Hmmm. What about when I travel? What about when I go to my acreage? I actually told my endocrinologist (at the time) about needing an injection to take to our land and he told me that I should not be going to any place that is isolated. Well, that's not a good answer. What about needing an injection BEFORE paramedics are able to arrive or before I can make it to a hospital which will require me to be registered, to be assessed and before my "rather healthy looking self" must convince the E.R, Doctor on hand to get moving quickly so I can be treated for an Addisonian Crisis? What about the hundred other scenarios when you might need an emergency injection?

Your treating doctor should be pressing you to keep an injection on you at all times and to wear a Medic-Alert item. If you go to the National Adrenal Diseases Foundation, http://www.nadf.org/, you will find the best information about emergency protocol that could help save your life or the life of someone you love who has Adrenal Insufficiency. Sometimes, you might have to provide your eager physician with more information. If you have a doctor who is willing to learn more and is pro-active in your care, then it would be beneficial to bring in print-outs for the doctor to read or to put into your file.

One of my endocrinologists was at a loss when I asked him to provide me with any information he could about Addison's, he told me to go home and look it up on the Internet because that was my best bet for learning about this disease. He had nothing. At least he was honest, I can respect honesty.

Regardless, if your doctor is providing you with substandard care and he is not open to making a change, then you really don't want him in your corner when you are forced into an Addisonian Crisis. If he is useless on a regular appointment day in the office, then don't count on him to step to the plate in your time of need.

Your doctor doesn't have to be a miracle worker. But, he should at least strive to go the extra mile to provide the best treatment possible and this means having an ongoing, updated understanding of those patients or his only PATIENT with Adrenal Insufficiency / Addison's disease. Conversely, your doctor's clear lack of interest should equal you saying those necessary words to protect your own health, "You're fired."

#70 - Acceptance for Starting Over

For New Year's Day in 2001, I wrote a little prayer for what I felt that I needed to do during the New Year. This journal entry was several months before my mysterious Addison's diagnosis, but I was already very sick. I guess it was prophetic in a way because I wasn't making any New Year resolutions, yet I prayed for areas where I would need acceptance so I could have the chance to start over. And, I knew I wanted to know the truth about what was wrong so I could confront it.

For the first time, I was avoiding the drafting of futile lists. Before falling ill, I regularly maintained my short-term, mid-range and long-term goals. However, by the time New Year's Day had rolled around, I was struggling. My entire goal in life was to just get through each day.

At this time, my body was not cooperating in a normal fashion. I was doing everything I could think of to sift through all aspects of my life in an attempt to get to the bottom of my increasing malaise. Nothing worked, my weakness steadily increased. Each week, I noted in my journals that something wasn't right. I constantly felt under the weather. What had changed? Previously, daily life had come at such ease and I normally had abundant energy, but my physical strength was fast deteriorating.

In 2001, I was in my early 30's, and I even questioned if this was how it felt to be over 30? Surely not! I couldn't imagine things declining that fast, especially because I was in robust physical condition. Regularly, I biked, walked, camped out, hiked in rugged terrain, played racquetball, lifted weights...living very active was a cinch. I worked full-time, took continual studies at the University of Houston in Clear Lake and was heavily involved with my children's school and extracurricular activities. My husband and I had even recently took Swing dance lessons and danced at a live Jazz club in downtown Houston. Life had been full and very busy.

The downward spiral I encountered was rather quick, yet my physical frailty progressed over many months. At first, it crept up on me in a way that made me think I was perhaps experiencing a case of being run-down from doing too much. I made alterations by beginning to say "no" more often to outside demands.

After that didn't work, I'd suspect another culprit as the reason for my lack of energy and would make another useless change as my condition worsened. Then, I went to the doctor repeatedly and was told that I had a major salt deficiency and this was probably causing my chronic low blood pressure. The doctor told me, "Put salt on everything, whether you feel like eating it or not, douse your food with salt because your body can't get enough." Actually, I was craving a few salty foods and V8 juice, but I didn't particularly enjoy the salt-shaker-buddy-system.

Looking back to this New Year's Day journal prayer, I remember the emotional aspects that coincided with the physical changes I was enduring. No one seemed to understand, just yet, how unwell I had been feeling. I didn't understand it myself. But, I knew that something had to give and was thinking that maybe it was my attitude toward accepting my "aging" body. Even though I was doing everything humanly possible to find answers...and probably saw more than fifty physicians between the clinic visits, E.R. visits and hospital stays...without a diagnosis until I nearly died, I still felt as if I could do SOMETHING different to change my situation. Part of my New Year was to learn that some things were out of our hands, acceptance indeed.

I kept trying to regain my strength while praying for the urgency over my ill-health to be calmed. Now, I thank God for His powerful gift in us that wills us to do our best to survive. Our auto-pilot puts us into motion with an innate desire to find answers and to get better. Sometimes, it isn't possible. Regardless, a good fight is worth putting up the dukes and ducking, then dodging when necessary. Acceptance was about to be a huge part of my life, but not until the fight had been waged with fierce determination.

My diagnosis literally came as I hung by a thread. For me, it was a long-awaited miracle. I do not see myself as a "survivor" because I simply received the mercy of God, for some reason, and was given a start toward getting my life back...partly through acceptance. Over the next ten years, there would be major obstacles and some lessons had to be relearned, but each time, I came away with a deepened perspective about life. With truth comes the need for acceptance, then the new responsibilities can be tackled. And, here I am.

My journal entry on New Year's Day as I lay sick in bed...
months before my diagnosis with Addison's disease.

Prayer reads: Lord, I pray this New Year will be a year of peace,
understanding, forgiveness, looking forward, accepting battles
you can't win & start over - a year of more responsibilities,
a year of learning & of truth.

#69 - Morphed Roses

What is a valuable lesson to be learned from having health battles? I believe a huge take-away lesson is to see the simplistic things in life more vibrantly.

The old saying "...stop and smell the roses," is an old saying for a reason. It has profoundness. When you are one-track minded and too rushed in life, you don't make enough time to stop to smell the roses or anything else for that matter, unless it intrudes upon your senses, unwelcomed. Those roses for me, after my diagnosis, morphed into that precious moment of listening to my child sing along with the radio, to being hypnotized by the trees swaying in the breeze, to feeling the touch of my husband's skin against my own and in hearing music as rich as Mozart in someone's laughter...things have become skewed in a more beautiful, meaningful way. In many ways, I feel like a child again --- simple life experiences are fresh and captivating.

I'd always loved photography as a amateur hobby. Watching people and focusing on nature through the lens of a camera had always been a fun past-time. However, after I was diagnosed with Addison's, I began seeing photography in a different way. I would look through the viewfinder and see the world with a foreign brain. Everything I had once ignored or had not found worth my time (the roses) had suddenly become fragrant and needing to be preserved by making time to notice or more permanently remembered by the click of my finger.

Hurricane Ike damage still seen here near our home.
Beautiful Danger.

Today, photography is fun. There isn't much posing. I rarely have a "wasted" shot because I can often find some element in the shot worth saving by cropping. I find joy even in the weird moments and am enthralled by standard, boring still-life that screams at me to be noticed.

Liter at a boat launch near our house.
To be fair, there was a huge city celebration at the bay, the previous day.

Eventually, I began taking studies at the University of Houston - Clear Lake for photography. However, I elected to not study digital photography. My professor, Van Edwards, was incredible. He let me choose what I wanted to do, within academic reason. Even my Advanced Photography classes embraced the dark room and all that comes with such an addicting ability.

My grandmother was a professional photographer. My uncle was a professional photographer. These people worked in the old photography studios when the cameras were not self-adjusting, you had to know what you were doing. Best of all, my brother-in-law is an accomplished, published photographer and I have his link attached to my "favorites" at my Home Page. He is an old-style, take it to an ultra-talented level photographer. He even builds his own pin-hole cameras out of antique lunch boxes, cardboard cereal boxes and whatever else he can find. I am jealous.

I am a happy girl this past weekend as we have old-fashioned fun.

I am thankful for my Addison's and other health issues for opening my eyes wider than was originally physically possible. Just as the camera lens can be changed and re-focused, so has been the road for the lenses built into my God-given eyes. After Addison's, I had a marked shift of focus. Nothing looked the same as I peered through the same eyes I'd been born with. Life itself was different. Red became more than a color, it became a great statement. Dull brown became brilliant and shimmering to my altered perspective. My world had changed.

This past weekend...cast net find that won't let go!

Since I don't have a dark room, I enjoy my little digital camera. For me, all the gadgets, cool computer programs and endless digital alterations will never compare to the excitement of being in the dark-room as I watch the image take form...controlling light and shadow in an intimate manner. Still, I am currently a digital gal.

Today, when I take my camera around with me, I am enticed to capture the smell, the sound and odd things overlooked. Simplistic is fantastic. Mingling my internal eye with the eye of a camera brings new life to me. For this changed blend, I am thankful.

Serenity within five minutes of our house,
as long as a hurricane is not approaching!