Tuesday, August 30, 2016

Losing my Mind


It's truly been a weird couple of weeks these last weeks. So much happening, so much change, so much news, activity, emotion, etc... One thing I have certainly noticed regarding the ever accumulating list of symptoms and the progressions of each, is the latest onset of mindlessness. I have noticed a somewhat aggressive deterioration of my ability to put thoughts together and to hold on to them for any short period of time. I am constantly finding myself starting off to go do - something? - only to get a few steps into it and wonder "where was I going, what was I doing, what did or do I need. Or hanging up the phone and wondering what all the details were of that conversation - very frustrating! Over the years, I have developed what I thought to be a good habit of writing down notes of conversations and to do lists etc.. But recently, I have realized a need for a whole new level of recording these events. I had read a few stories online from other Cushies struggling with similar experience, but as it is with many of these, I did not, could not appreciate the true implications to which this particular symptom interferes with even the most fundamental or basic functions of day to day living.

One aspect of this symptom I did not consider is the fact that It has become even more obvious the degree to which people use the measure of your attentiveness as a guide to how serious and or sincere another person is. If it appears that you are not adept at  making things important enough to remember or recall, then sharing important information becomes a futile exercise, not worth the effort. Therefore, you gradually find yourself in less and less meaningful exchanges with the people  which is yet another log on the fire toward that isolated, lonely, place where depression often resides.

The aspect most disturbing for me, is the weakening faith in myself. As I notice more and more items being left undone or done incorrectly, I begin to question my abilities to take care of myself properly or others who might be counting on me. One example, which just happened the other day, is that I noticed, while refilling my pill box, that I had a day bin that was still full of pills, which should not be the case if I had taken my pills as needed. I could not for the life of me figure out what may have caused this and or if I had compensated in some way and just forgot etc.. Just a mysterious unsolvable clue. Another case that just happened, was on a night when I was using the oven to prepare dinner for my girlfriend & I for when she arrived home from her day of work. I finished preparing the meal on time and had removed it from the oven. We enjoyed our meal together and spent quite a long while after just lounging and conversing with each other. Later  on when I decided to go clean up the kitchen for the evening I noticed that I had left the oven on the entire time! I never do this, as I have always been a stickler about shutting the oven down at the same time that the item being cooked is taken from it.  I can better appreciate all the horror stories I have heard over the years regarding elderly people who have subsequently burned down their homes for exactly the same error. It was a bit of a shock as my mind suggested to me that I had done what I always do and that there must be some other paranormal activity which was responsible for this act of negligence. I was completely befuddled over trying to make reason with the evidence.

Sure, these things can and do happen to many people who do not have Cushings and can be chocked up to just getting older, or having my mind so preoccupied with so many other things at this time or an elevated level of stress etc.. And it could very well be that those things are part of the equation, but I can't help but feel as though, to level and degree that I am experiencing these things, that the disease itself is a major contributor.

Thursday, August 18, 2016

All about Me!


As I have mentioned elsewhere in this blog, this journey is not without it's moments for reflection and self discovery. Some days much more than others and some, more acceptable and rewarding than others. Either way, there is no denying that catching little glimpses of  hidden or ignored personality traits can be quite humbling at times. Today just happens to be one of those days for me and so, felt as though it would serve well as my post for the day. What is more, is that the timing of this particular discovery is impeccable in relation to the fact that it  falls just three days shy of my girlfriend and my Anniversary in friendship. August 21st will mark two incredible years that we have known and grown together through some of the most dynamic situations I could never have dreamt of. 

Looking back over these last two years, I am able to see the significant changes that were in effect and taking place due to the presence of this disease called Cushing's. Back then, I was completely oblivious and unaware of any such thing or even suspicious of having any illness to begin with. For me, outside of just normal daily struggles and battles, it was all just life as usual, so to speak.

Nicole and I kicked off our relationship in a more or less typical way where a friend decided to play matchmaker and pair us together. Our first date was appropriately awkward and full of the usual fidgety blunders. For starters, though it hardly ever rains where we live, it just so happened that it decided to rain on us as we made our way to the tiny Mexican food restaurant that I had picked out for us. After being seated, and as the hostess was handing us our menus, there was a small thud and a sudden rush of surprising chill consuming my lap as the contents of Nicole's water glass was promptly finding it's way to that area. Later, when it was time to check out, I discovered that the restaurant did not accept credit cards, which is all I ever use! I actually had to leave sweet Nicole at the restaurant, while I drove to the nearest ATM machine to draw out the cash needed to pay the bill! Needless to say, I was fairly well settled on the fact that this would not only be the first date with Nicole, but the last one as well. If nothing else, we were certainly deprived and humbled of any grandeur or embellishing and were left with the pure, honest and simple "as-is" reality, which was actually quite refreshing. Awkward, but refreshing. Little did I know at that time, the importance and significance that those first moments would have over our lives together for the next two years and counting.

At this point, you may be wondering what any of this has to do with Cushing's and my journey through it and the mention of self discovery etc.. Well, as I have mentioned, there seems to be a lot of self discovery that comes as part of the package to long-term illness. A lot of time spent alone. caught up in my own mind, dealing with all the various people, places and things associated with the treatment process. In addition to trying to keep in tact, at least some form of your old life and responsibilities, there suddenly comes the countless Doctors appointments, scheduled tests of all kinds, a plethora of medications each with their unique time schedules quantities and effects etc... I could go on and on. The point being that, there is a very real and influential storm of chaos and confusion, which has a tendency to draw down your attention and set your focal point on the "me" part, or all that concerns "me", that is happening to "me", will happen to "me", "me,me,me,me,ME!.

But there is SO much more going on outside of this little bubble in the Universe, I call "my life"and the impact that this bubble has on the world around it. Particularly the lives of those directly connected. Unfortunately, I have discovered how easy it is to neglect to acknowledge the effect, toll and overall derangement, that this illness, as with any, has on the precious people who deliberately and so lovingly choose to hang in there, roll up there sleeves and participate in all of the unique and various battles, which are not there own. I have seen but cannot fully imagine the impact and effect that this has had on my Mother, my children, my boss and clients. But far from least of these is my dearest sweet Nicole, who has, from the very beginning, which is about the exact time that the major signs and symptoms first began to appear, Has so diligently remained anchored to my side like a pit-bull to a T-bone! She has cared, shared and provided in every possible way to my condition and the demands that come with it. When I truly stop and think about it, I am overwhelmed and unable to grasp the totality of her efforts and to the overall impact and toll that this has produced in her life. It is truly amazing and nothing shy of a miracle to have met such a person as she. From the very start of our relationship, we adopted the moto " I love you just the way you are". Since then we have committed to the unconditional acceptance and respect for the person that we are, flaws and all. And I am anxious to celebrate the date that marks the start of this beautiful union.

So I leave you with these thoughts of mine, for those moments when you may be feeling as though you are going it alone, and you find your heart growing anxious, depressed, bitter or lonely, that you take another look around and discover that, chances are, that you are well connected to at least a few who truly care and support you in some way or another.  

Wednesday, August 17, 2016

Oceans of Emotions



One thing I have become increasingly aware of with this disease, is the change in my overall personality. Where I once was more fluid, outgoing, engaging, open, motivated, inspired etc., I have slowly but surely been retracting into the shadows and preference a more reclusive existence. I feel somewhat cut-off from the busy, bustle world. I have become consumed, for the most part, with all things Cushing's. And the physical pains and appearances that are all typical signs and symptoms of this condition serve as a constant echo of self pity, frustration, anger, disappointment, anxiety, fear etc.. generating a virtual one-way ticket to the dry lonely fields of depression and despair. I find my heart churning in the various tides of emotions knowing that each are nothing more than temporary feelings induced by overcharged and unregulated hormonal imbalance, but yet desperately caught in the ever swirling exchanges of surging energy. There seems to be no set pattern to the cycles only a guarantee of their daily presence.

Though it may sound as if I have nothing more than absolute disdain and contempt for the disease and it's effects on my presumed life. I would be completely dishonest if I were to neglect the other side of this amazing experience, which is to speak of the many alterations and provisions that have come as a direct or indirect result of being subject to this story. I have discovered new and ever expanding levels of; patience, of compassion for others caught in the web of illness. To become more acutely aware of the presence, privilege, and miracles of life happening everywhere, all the time. The ease to which we become infatuated with menial activities and pursuits. The divisions, labels and distinctions that act as wedges in our relationships and so much more. I am certainly not without pain and discomfort, which are unpleasant in real-time, but I cannot dismiss or deny the fact that I , when applying the effort to do so, see this experience as a personal, somewhat spiritual endeavor. One that is specific to me and my position as a member of universal existence. This is the roll for which I am created and suited for, beyond my ability to fully appreciate and comprehend.

Tuesday, August 16, 2016

D-Day

I must admit that I struggled with the use of D-Day as the title to this post due to the nature, signifigance and sensativity that are all viable priveledges to that  monumentaly historical event. However, outside of the magnitude of the true historical D-day, in comparison with the one I am associating it with, there are many similarities for which I find the term apropriate. A few examples would be; the act of finaly taking control and gaining possesion or a valuable foothold in the battle at hand. The moment where, to the sacrifice of so much there is a turnng point, and subsiquint victory toward the goal.

I am, of course, refering to THE day. That infamous day and moment that one finaly receves the news. After long ardous months perhaps even years of frustrating results and seemngly endless tests, trials, interrogations, accusations, etc... you hear the words that strike a chord in you that begins to resonate and amplify til you are virtualy shaken to the absolute core of your soul. It is quite difficult to truly explain the rush of emotional energy that comes bursting forth at that moment. In addition to this overwhelming event is the peculiar sense of awareness that you are actually relieved and excited to accept this position. I found myself thinking, "how odd that I am so happy to know that I am actually sick!".  This moment I am describing to you, this D-Day for me, came just a mere 25 days ago on July 22nd at aprox. 4:30pm. At times it seems like a lifetime ago and then still at others, I feel as though it were literaly just earlier this week. But, regardless of how long ago it actualy was, it is quite evident that progress toward treatment has taken on a whole new focus and momentum for which I am extremely thankful. Rather than the day to day battle, that proverbial swimming up stream, I now feel a slight current to my back which is providing me with a renewed sense of hope and accomplishment. I firmly believe that this energy will help to see me through the remaining chapters of what has become my life story. I can only hope that if anyone should happen to come upon this and are caught in the frustratingly stagnant waters of trying to identify or confirm this murky disease, that they will find strength enough to remain steady and persistant in thier pursuit. Trust and have faith in your intuition and what your body is telling you for it has no reason to deceive you.

Wednesday, August 3, 2016

Getting Started

Image result for Getting started

Hello All,

My name is Craig and I am a 46 yr. old single dad living in one of the most spectacularly beautiful locations of the United States. The state of Colorado. I just received official diagnosis with Cushing's Syndrome. Which, in a nutshell, is considered a rare condition where the body, for one reason or another, is flooded with an otherwise regulated amount of a naturally occurring hormone called Cortisol. I plan to provide more detail regarding the disease in future posts. But for now, I suspect that if you have found your way to this point, that you are more than likely at least basically familiar with the disease. My goal here for this post is to simply push myself over the hump, put an end to the procrastination, introduce myself and to begin to produce a record into the drama filled emotional roller-coaster ride of a life that is associated with Cushing's. 

Though I am somewhat new to the world of Cushings, at least the awareness of it, My story, as I look back, started quite a long time ago. Long enough ago, that it is difficult for me to place a true start date as to when I first developed the condition. There are so many symptoms that can be generally seen as just stand alone issues or issues related to so many other illnesses, that it is most common for the disease to go undetected as the root cause for many years while doctors diligently treat each of the symptoms individually, case by case as they appear. It is not until a few of the more common symptoms begin to accumulate and the overall health condition of the patient begins to take a dramatic turn, that suspicion toward a linking condition begins to form. For this reason, you can see how it can easily blur the line where the disease officially originates.

Again, I plan to try and put together a timeline of events as to when these symptoms began to appear from my personal experience in upcoming posts in order to provide as much information as I can in hopes that it will be of some benefit to anyone considering the idea that they or someone they know may be suffering from the effects of this disease. In my own experience, it was through web posted articles, chat room discussions and personal blogs such as this, that I was able to recognize and begin pursuing an official diagnosis and the treatments necessary to establish an effective maintenance plan for living with and managing the incurable disease. It is my hope that somehow or in some way, that this blog too, will contribute to the overall effect of helping others as well. And as I am just basically getting started here and learning as I go, I am looking forward to hopefully hearing from others who are at the various stages of their journey and what they have learned so far. 

If nothing else, or at the very least, perhaps the keeping of this blog/journal will help me to clarify and/or sort out my thoughts and emotions as I traverse the deep open waters of Cushing"s Syndrome.