#78 - Preparing for the Bad Days

I grew up hearing the saying, "Expect the best, but prepare for the worst," and this is one of my little phrases that I live by. After becoming very ill with Addison's, I certainly learned to prepare for the worst because those bad days had barreled into my life too many times and I had not been ready. I had been knocked off my feet, literally. Finally, I realized that the least that I could do to lessen the impact of a bad day is to be prepared.

If a bad day comes my way, and I am just lacking the energy or the wellness to confront a day with physical activity, then I have a couple of spots in my house that are comfy and nurturing. These areas have been better prepared by some planning and effort.

In my bedroom, I have a large nightstand that holds pens, pads, my medications and it supports a nice little lamp. I have a bookshelf nearby that has boxes of family photos, magazines, books and my journal to write in. My laptop is always nearby and my phones are close at hand as well.

In my bedroom, I have two french doors that allow me to look into the backyard. Lately, I have chickens to enjoy watching. They are amusing and comical.

Whether I'm sitting in my leather recliner or relaxing in bed on those bad days, I have televisions with a DVR of my favorite shows and movies waiting on standby. Normally, I have an extremely difficult time sitting still and cannot lie back during the day, so when I am not doing well and am forced to recline, I try to watch a movie. But, it's not easy for me.

Of course, my dogs are always by my side. Howdy seems to always know when I'm not doing so great. He occasionally jumps up with his big paws leaning on the side of my bed to take a look at my face, very closely. If he's satisfied, he slinks back down to the ground to curl up and be quiet. If I am really not feeling well, he does a huge no-no, he jumps on my bed and stands over me to directly look into my face. If I'm feeling especially yucky, he will begin to make huffing noises of frustration and he refuses to leave until I convince him that I am okay. Usually, this means having to get up and walk around with him a bit. If I am very sick and not able to get up, then he lays down by my side while intently watching me and he won't listen to commands for him to get down, that's not like him either.

When you really aren't feeling well, it can be irritating to have a large dog act like a guardian, but then, I know that he's also helped to pull me out of a very low blood pressure time frame simply because he gets my blood pumping with irritation. He rarely does this, but when he does, I've come to realize that it's best if I simply take more medication because maybe he's sensing something that I'm not totally aware of. His keen attention to my state of being is amazing. He's one dog that is majorly in-tune!

Every morning, my sweet husband makes me a nice sized glass of hot tea and brings it to me as he kisses me goodbye. It's a tradition he's always done for all three of his girls. So, I have my tea next to me and if I'm not feeling well, I'll often have a package of crackers nearby. Also, there is always plenty of left-over food in the fridge that's easy to heat up. I'm the cleaning gal and my husband is the one who cooks the most - he is a Deputy by day and a Chef at heart.

Of course, I always expect to have the best day possible. Sometimes, my day might start out rotten, but it gets much better. Or the reverse will happen, it starts out with me bouncing off the walls with energy and I'll suddenly be knocked down by some mysterious entity, I believe the name is Addison's disease.

Some people are on the end of the spectrum of this disease where it is easier to control and others are stomped to the ground by this disease, even with the best of management. This is understandable when you think of people with any condition - as an example that most of us have seen, a cancer patient might be able to quickly conquer their cancer, but the next persons finds themselves with the same kind of cancer, yet they are quickly engulfed. Such is life - it is not fair.

I knew one person with Addison's who was on top of the world, he felt as if he had perfect control of his disease and was into body building and living a "perfect" life, for years. He said that controlling his Addison's was not an issue, he had regular bouts with colds, stomach bugs, etc., but nothing got him down for long, Then, one day, he got a "little" virus and his entire world capsized. Now, he's constantly battling for a good day. I don't know why this happens, but I take my good days as a huge blessing and make the best of them.

This past week, my Internal Medicine doctor (who now treats a few patients with Addison's disease) revealed that every one of his patients with this disease are disabled...they qualify for disability. That is revealing. I was shocked, but also not surprised...weird kind of reaction.

Preparing for the bad days means that I also take full advantage of my good moments. If I am having a strong, energetic morning, I use that opportunity to get as much done as I can. Usually, I'm like a hurricane because I don't know how long it will last - perhaps for days, perhaps for mere minutes. I can never tell. However, I utilize every good minute that I can grab. This is how I somewhat stay on top of things. Not that I do a great job of it, but I do work hard to keep my floors clean, the sheets clean, our laundry done and family paperwork in order. Then, I get to blog - I get to write and to reflect on how life has changed because of Addison's disease and how I might be able to relay that information to others.

Today, it looks like I'll be given at least a part-Hurricane day, there's so much I'd love to do...painting, organizing my laundry room, clearing out my office, going through old files, but I will take it one step at a time and be happy with however my day goes.

I must add that preparing for a bad day also includes leaving condemnation behind. Having a bad day is bad enough without having to beat yourself up over having a health condition that can be challenging and that you didn't ask to come into your life. You deal with your unwelcomed visitor as best you can and keep moving forward. So, I accept who I am, I accept what I can and cannot do, and I accept life as it is. And you know what? It's not so bad; it's actually full of goodness and blessings.

Actually, I want to make it clear, that in spite of my challenges, most of my life is incredible and full of deep meaning...I am definitely blessed and I treasure each great moment!

#77 - Good Times

This past weekend was wonderful. I made it to my husband's brother's house for a beautiful afternoon visiting with a family that I've known since I was about 15 years old.

I looked around and found myself giggling to myself at how we're all getting older. I'm the youngest out of the bunch, at 43 years of age, as of this month, yet I've had incredible health problems. Still, I am joyful and full of happy bubblings within me. Most often, I am in a lot of pain, but I've learned to push it aside with the distraction of life. Some days it's easier than others. It makes me think about how we have to FIGHT our yucky labels.

Most people, even my doctors, tell me that they'd never imagine I'd look so vibrant after all of my health issues. Every time I'm in the hospital, I get a new doctor here or there walking through the door of my room and they end up with a shocked expression after they see me --- they start fumbling through my chart to make sure they are looking at the right patient. Then, I get the comments about how they just learned a valuable lesson about the mistake of pre-determining how a patient should look based upon their chart. A person's condition might not dictate their appearance. Some people can wear the mask well. The same goes for the opposite truth, a person may be as healthy as the sun, but they might look like a walking disaster.


My husband and I catching a shot together.

As I sat there visiting with my husband's family, I realized that each of us has faced big hurdles; we all make an interesting bunch. There was a brief moment, in the middle of us all telling jokes and sharing stories that I had to fight back a secret tear of realization that even though we each have struggled, we are here, and we are laughing.

The two sisters share a May birthday. We're there to celebrate!

I've faced imminent death too many times and have been under the knife for serious surgeries, more than I can count, but I'm here. One brother-in-law of mine has had cancer, a skin cancer that was surgically removed early, Thank God! Another brother-in-law has had back surgeries and does his best to keep moving forward. One of us in the group had a hip and knee replacement right around the age of 40. A good friend sitting with us has gone through her husband committing suicide last summer and the list goes on and on. Still, we sit together and find every reason imaginable to laugh and to celebrate life with each other.

In May I began another blog to balance this one. My Addison's disease has been life-changing for me. I've been sharing my experiences about the past ten years that I've lived with this condition. Addison's disease has complicated my life, it is not always easy. So, I decided to write with raw honesty about my daily life to hopefully let others know that they are not alone in their battles. My journey in Finding Lana was underway in a huge way. But, as the months of writing about Addison's passed by, I found that I needed to give myself some balance and freedom to write about the other part of my life...the part that keeps me motivated to move through difficult days. So, I write about our experiences on our acreage. Having land to cultivate and to prepare for our future home and farm is exciting and rewarding.


David "solving" the Rubics Cube.

Since we live just outside of Houston and have worked in the Houston area for most of our lives, we are city people through and through. To contrast this life, our acreage is a couple of hours outside of Houston and is smack in the middle of wooded forest...wilderness. The difference between our weekday way of life and our weekend way of life is huge. So, I decided to write about these experiences that are most often humorous in a wacky sort of way.

My brother-in-law Mark's family. Beautiful.

Hence, www.FarmLifeLessons.blogspot.com has become another outlet for the weird, funny happenings in my life. This blog reveals a lighter side to my little corner of the world and it helps to remind me that my Addison's disease is not my boss!

And, no, I don't smoke or drink, but I sure do love a lot of people who do!

Come visit me any time at the other blog and if you know anything at all about farming, I sure hope you share your knowledge with us!

#76 - Making Flexible Plans

Life has always been full of good days and bad days, But, since I was diagnosed with Addison's, the good and bad days can wildly fluctuate. Sunday might be excellent and my energy might be boundless. On Sunday, I might feel as if I can conquer the world and my level of productivity might be incredible. Then, Monday morning comes and before the break of dawn I awake with a heart rate that is soaring and blood pressure that is plummeting. What the Heck? I have BEEN ASLEEP! How could I be going into an Addison's crisis in my sleep? Especially when I've been taking my medicine as scheduled.

Maybe I had been having a nightmare and it sent my body into overdrive. Part of my Addison's disease has required me to take Atenolol when the heart rate gets going too high and my regular medications don't work. Taking Atenolol can help bring down the heart rate, but I must be very careful because it also causes your blood pressure to drop. As usual, it's a tight-rope walk.

So, this brings me to the complication of having a disease that is not always easily regulated. Making plans in advance is not a comforting ideal for me since I've struggled with Addison's. It doesn't stop me from trying, but there are days when my body is nothing more than a ragdoll and trying to follow through with my plans would be simple silliness. Through the health battles, I've had to learn to accept what I don't always want. It's a big pill to swallow, but I think it makes you stronger in character. When you can't always get what you want or do what you want or be where you want, then you become more humble.

We have plans for this weekend. We're going to my brother-in-law's house to celebrate his daughter's third birthday. These are the days I do NOT want to miss out on enjoying. I hope it will be a Conquer The World kind of day!

I PLAN on having a wonderful time with everyone, but if my body has other plans, I will do my best. Often, if I am having a day that's giving me problems with my blood pressure, I can somewhat fake it and make it through good enough. But, other times, it just doesn't work that way. Taking extra meds can indeed be helpful, of course, but it is not always quick and easy to get things in perfect order when you have an imperfect disease.

Still, I make my plans and keep going headstrong with determination and excitement. If a bad day comes along, I obey my body and pick up a good book. In between the books, I live life as fully as possible and soak in every awesome moment I can absorb!
 

My youngest daughter, Stefie, scuba diving with her daddy in Cozumel,
Mexico as I enjoy watching and soaking up the sun.

Here we are at the Real Ron Jon shop in Cozumel.
We are living it up and have our bubble waist lines from our
awesomely attractive fanny packs.



#75 - My Smile Reached My Eyes!

Most people put on this show of dreading the added number to their age. To them, having another birthday means a body that's getting older and they don't want to continue losing their youth.

I have a total opposite outlook about birthdays. For the past ten years, since I was about 33 years old, I've had many struggles to stay in this world. Prior to 33 years of age, I was living in a dream world without many problems and then I suddenly hit some kind of mysterious bump in my healthy existence. Life changed for me. Dealing with serious illness and major surgeries that put my life in constant danger helped to create a different attitude for me toward birthdays and getting older.

This past week, I turned 43 years old and could not believe that ten years have passed since I first became very ill with Addison's disease. At this time, ten years ago, I was dreadfully ill and weak beyond description. Life had been going downhill for months. Before the doctors figured it out, I knew I was dying. Thankfully, my diagnosis came right at the last moment. Literally.

Since then, I began to look in the mirror for little lines on my face. Like a kid, I'd sometimes stand close to our mirrored doors and smile real big while looking for crow's feet around my eyes. Where are they? There would be nothing but smooth skin. I'd practice smiling hugely to see if my smile would reach my eyes. For some reason, I eagerly looked forward to the day when I would have "smiling eyes."

My best-friend has beautiful crow's feet around her eyes and you have to understand how this looks to me...in my view, I see these little lines around the eyes as beautiful sparkles that make a person's eyes seem more brilliant and interesting. Jealous me wanted some of that as well, but I guess I'd not grown old enough yet.

My best-friend in the whole world...at my church wedding, in the days before
she has grown old enough to enjoy some crow's feet.
She's more beautiful today than when she was here in this photo at
only about 20 years old because her smile has reached her eyes.
These days, we get to watch each other grow old and be delighted! And, SHE is just as skinny today!

Finally, last year, I began to slightly develop some crow's feet and I was excited! Finally, I was developing TRUE beauty!

My niece and I having a fun time this past October. I can FINALLY see my smile touching my eyes!

I do realize that my near death experience has had a profound impact on my life. Each birthday, I celebrate with gusto and thanksgiving to the Lord because I have been given another year. Some of these years that I've survived have been nothing less of miraculous.

Over the last ten years, I've experienced collapsed lungs, internal bleeding in the the chest cavity, my heart was being squeezed by the sac around my heart filling with fluid and squeezing it too tightly, my neck broke and nearly severed my spinal cord, my thoracic arteries were being choked by scar tissue and muscle which caused me to have more ribs removed and more medical horrors...and list goes on. But, I am not going to sit here and complain about the blessing of growing another year older because I am so darn grateful to have the honor of growing grey hair and wrinkles.

Having a birthday means...I AM STILL HERE!! I get to enjoy what life offers for a bit longer!

So, when I see my little developing wrinkles, I am elated. Those wrinkles have great meaning to me. They signify LIFE and the accumulation of many wonderful times in spite of difficulties.

My youngest daughter and I having fun this past year. I bet she'll have a hard time developing those wrinkles too...
beauty comes to those who are patient my dear!

#74 - Trauma from Illness

I replied by email to a new blog friend today about the emotional trauma of falling very ill, especially at such a young age. As I told her, our bodies are not expected to become progressively weakened on a severe level while still young, it's not normal. I only expect that kind of thing to happen around 90 years of age! When you encounter a serious illness at a young age, everyone knows that the timing is off. It's never a good time to be ill, but during youth it is ruthless and without compassion that you've not yet been given a chance to fulfill your dreams. Nothing in life prepares us for this backward circumstance. That is part of the awful trauma of falling so ill at a young age, it's not supposed to happen. So, the email she had sent me did tug at my heart.

It doesn't really matter what kind of illness it is...it can be cancer, MS, or Addison's disease, you will be knocked off course in life. If you have been unfortunate to fall very ill before a diagnosis is made, then you will be especially traumatized because every aspect of your life is impacted.

Getting an early diagnosis with any serious health condition is imperative to your life, overall. Getting that early diagnosis means that you get to start treatment BEFORE the disease or illness puts on the dark cloak and starts to pull you under. Getting an early diagnosis means you are so fortunate to escape all of the terrible changes that occur when you cannot lift your head off of a pillow due to the body starting to fail. For some people, the diagnosis comes too late. After being in contact with other people with Addison's on a very personal level, I have seen this fact much too often. Addison's disease is not something to toy with.

If you have suffered tremendously from a prolonged delay in being diagnosed with Addison's disease or any kind of Adrenal Insufficiency, then be prepared for a potentially bumpy recovery. You might feel immediately better after you are put on medications, but it might take a bit longer for you to physically feel markedly better. Beyond that, you might be emotionally, financially and mentally exhausted.

My Addison's experience forced me to change everything about my life. I mean everything. I would have never wanted to make those changes, if I were given a choice. Due to the severity of my condition, my choices were extremely limited. My broad existence in life with untold options suddenly became very narrow. However, today the small tunnel has greatly widened again, and I am thankful for many of those forced alterations to my life because everything did become more brilliant and meaningful.

For those of you who are going through painful times of change because of your disease, don't give up. There might not seem to be brighter days in front of you, but those bright days are only hidden by temporary storm clouds. Eventually, the light will peek through and you'll soon find yourself standing in the sun again and it won't hurt as much. Until that day comes, you might have to create your own sunshine. Every little moment that is a blessing is to be your distraction...make it your distraction. This will help you get through the worst. Changing your focus is not easy, but it will surely make you a changed person, and I bet you will like the "new" you, even with the Addison's label and all the ugliness it might entail.

I wish the world were full of perfect doctors and perfect minds who run the perfect tests before it nearly becomes too late, but that's not the norm for most people with this disease. Hindsight is definitely 20/20, but if you've never heard of this disease, then you cannot help the doctors do their job. It's that simple. Your disease is usually a needle in a haystack.

Part of my difficulty from having Addison's was my deep sense of guilt. I felt as if my entire family's stable existence had been altered because of me. Well, it had been. But, the guilt was something that took a long while to push away, and it still can come creeping back with a vengeance. My family also suffered deep emotional turmoil from my illness. All of us were trying to find our way into a new kind of existence. And, we did.

Fortunately, I was given more second chances than I can say. My second chances have been a repeated blessing. Some people have one chance and that's all they get. Life is not fair and it doesn't always make much sense.

So, once you have a diagnosis, fight back by doing all you can to take charge of your life and to redirect it. If you were one of those who were completely knocked off course, then begin the very tough task of trying to get back on course. But, it will be different and the old course may be completely wiped off the map. You will be different. Life will be different. But, I am also here to say, in many ways, life can be much better.

My oldest daughter and me, this past weekend for beach day
in Galveston for my 43rd birthday. I was 33 when I coded from
Addison's disease. My life is challenging, but amazing.

My youngest daughter and me, also this past weekend. I am full of
blessed moments such as these. Every good day is a treasure.

My tiny, tiny daughter, Stefie, who is nearly 21, playing football
on the beach with her sweetheart.

My oldest daughter, Heather, who is 23, is playing with my
dog, Howdy. Heather is nearly six foot tall, she takes after
her daddy, so you can really see how high Howdy can
go in his game of "jump and catch."