Showing posts with label Cushing"s. Show all posts
Showing posts with label Cushing"s. Show all posts

Monday, August 31, 2020

In the News: Isturisa (osilodrostat)

 

Latest News

    In the wonderful world of health & medicine, it is an unfortunate truth that progress happens in small doses and and at a pace that is barely noticeable as can be witnessed in the scramble to produce a working vaccine for this current Corona Pandemic. 

    However, much like catching that unexpected glance of a shooting star as it races across the night sky, we are sometimes blessed with the opportunity to catch a glimpse at the truth that despite the temptation to fall victim to frustration and hopeless convictions, there is, in fact, a forward movement of progress that is definitely at work.

    During my latest research on the latest Cushing's News, I happened across this article, which ignited in me that same response as to the shooting star I mentioned above. It's been a while since I've seen anything new come about as the result of ongoing research for treatment options available to Cushing's Disease patients. 

FDA stamp of approval


    Evidently, as of March of this year (2020), the FDA (US Food and Drug Administration), the folks who are burdened with the responsibility of determining whether or not a particular food or medicine can be deemed safe for human consumption or not, released a bulletin regarding a new Drug called Isturisa, that they have given the designation of "Orphan Drug", which is evidently a designation given to any substance meant to treat rare disease or conditions such as Cushing's. 

    The FDA claims that Isturisa works to disarm the synthesis of Cortisol in the body thereby reducing the overall destructive effects that abnormally high levels of the hormone have on the rest of the body. Upon evaluation, they are claiming an 86% success rate at restoring Cortisol levels to near normal levels, which is a very impressive statistic, in my opinion! 

Boxes of Isturisa a new Cushing's Disease medication


    Though, due to the fact that these drugs are not a remedy to the remaining root issue, which is the presence of a benign tumor located somewhere behind the scenes running amok, this new kid on the block option, like others of its kind (i.e. Ketoconazole) is mostly considered as an alternative to a surgical procedure but where surgery is no longer an option available or as a temporary bridge to provide some relief of symptoms while the wait for surgery is at an extended length of time, like during a Covid-19 Pandemic! For now, surgery still remains as the go-to procedure for dealing with Cushing's Disease as it strikes directly at the root of the problem. 

    Anyway, regardless of the fact that Cushing's Disease remains on the list of rare diseases lacking a definitive cure, it is quite refreshing to see some evidence of activity toward the relief of it's dramatic and altogether dangerous effects on the body. Though I must admit, that pesky little kernel of conspiracy theorist that looms within me often wonders if these efforts coming from big Pharma aren't just polished-up, freshly presented money pots for our precious few remaining dollars! But, I should leave that for now and let you be your own judge on that. 

    If you're interested in reading the full press release on Isturisa from the FDA, I have provided a link to it for you here: Isturisa (osilodrostat)

    As always, I hope that all is well in your world. If you have any questions or additional information to share, please be sure to leave a comment below and thank you for visiting The Cushing's Trail! 



Monday, September 26, 2016

Time to Tell


Til now, I have utilized this space for expressing mostly my thoughts and feelings in relation to my present condition with the disease. But it has been pressing on me more and more to turn back the clock a little and try to shed some light on the journey as it has come to pass over time.

Since the beginning of my suspicion to the disease, I have taken the opportunity to read and absorb the vast array of experiences so thoughtfully shared throughout the world wide web. What I have come to realize in so doing, is the therapeutic benevolence that can be gleaned from these treasures of the heart. It is also, with hope, that perhaps any glimpse of similarity might project just enough information to expose the presence of or potential for, an earlier diagnosis of this condition, as time is a critical factor to the overall success of recovery.

As with most of the stories I have read, mine too, is with only slight differences here and there. And for all I can tell, each have both specific differences and general similarities within our individual accounts.

But, before I begin down this long and winding road, I think it is only fair that I issue this advanced confession for your kind consideration.............




It is somewhat difficult to determine an exact date for which I could attest to having come down with Cushings. It is quite possible that the terms and conditions that govern the existence of Cushings had been present for a very long time prior to any symptomatic experience of it. However, by looking over old photographs I am able to detect the begining of some physical signs of change that were of little concern to me at the time which, would be somewhere around the earlier part of 2013, when I was just 43.

One of the very first symptoms, which was completely non-physical or externally visible, was an all-of-a-sudden, almost overnight, loss of libido. like someone flipping a switch and poof! Something I became increasingly concerned with as I expected it to be only a temporary, stress related thing that would return to normal within a relatively short period of time.

Spring 2013 Before Cushings
 The first and most revealing physical sign to appear, was a trend of weight gain particularly around the midsection or belly area. Unfortunately, as a familial trait from my fathers side, this is not so uncommon as to be something I should not expect to occur at some point in my life. So, I chalked it up to not much more than that and did what most of us tend to do with such an acknowledgment, which is to slowly begin working out a diet and exercise routine in an effort to thwart the progress of the undesired effect. At first, I was able to claim some success to the effort, but then would be circumvented and involuntarily bestowed with more than what had been previously discarded. A very frustrating campaign. One that I had discovered to be not so uncommon with the experienced dieting community. And so it went, off a few, gain a few more, off a few, gain a few more....and this trend has not ceased since it's inception to the present gain of about 54 lbs. despite my most diligent efforts. 
Spring 2016 Cushings "Moon Face"
The very next irregular development to show, was a significant amount of swelling in my feet and ankles accompanied with a strange tingling sensation that started in my right hand, or more specifically, in the fingers. To present, this has continued to advance to include both arms and both feet. The swelling in my ankles continued to worsen and I began to suspect that I was developing diabetes, yet another gift from my predeceasing bloodline. So I managed to catch one of those traveling periodic health fairs while it was in town and had them check my blood. And to my surprise, the result was absolutely normal and no cause for further concern to that end. However the swelling gradually became more prevalent. In conjunction with this, I had begun to experience problematic sleep habits, better known as insomnia. Yet it would periodically occur with little to no effect on my daily energy. I could still function quite well on an average of just 2 hrs of sleep every night.

Dangerous BP

Around this same time, now about mid or June 2013, I also began to develop a constant trembling in the hands that eventually became noticeable to friends and acquaintances to the point that they would occasionally express their observation with slight concern. One particularly close friend at the time, suggested that I have my blood pressure checked, which, with some diligent persuading, I reluctantly did, knowing that, this too was a strong family tradition that I could only be legitimately deemed insane to consider that I would or could even possibly escape that legacy. And so it was on that very night, the first time I became aware that my blood pressure was running about 200/150, to which my dear friend just about fainted and demanded that I go to the ER. I kindly denied the suggestion and decided that I would just need to research and and incorporate some proven method to my current and ever evolving diet and exercise routine in order to tame the newly exposed beast of burden. I was completely uneducated and therefore terribly naive to the potential severity of the situation that I was dealing and therefore, it was without much ado that I just carried on with very little alteration.


irritating skin rashes
The very next exhibit in the growing parade line, was the development of a strange and irritating skin rash that broke out on both elbows and quite rapidly spread to both knees and forehead. These areas would become inflamed and itchy, producing patches of raised bumps along with small pin-dot flakes that I would have to habitually and uncontrollably pick at until they were successfully peeled. The result of this would cause excessive bleeding for which I was always impressed to discover.


  
It wasn't until the later end of 2013 that the swelling in my legs had become significantly concerning and I was gradually taking on signs and symptoms of a very persistent cold. Aches and pains, coughing and wheezing,shortness of breath, rapidly diminishing energy, expounded sleep deprivation as a result of each of these in exaggerated form throughout the duration of the night. I was suspecting that, at best, my cold had progressed to a case of pneumonia or perhaps even worse, that I was dealing with the onset of emphysema. Still, I refused to go to a doctor to be checked out believing that I would/could overcome the pesky hindrance with time.

It was to the credit, concern and circumstance of my oldest son that I was in a way forced into a meeting with a doctor. My son was complaining of a severe sore throat to which we suspected was Strep and were going to have it tested at our local clinic. However, seeing me struggle to walk just 5 feet only to succumb to a fit of desperate coughing and gasping for air. And as I stood there wheezing uncontrollably and nearly collapsing, he proclaimed that he would not see the doctor unless I agreed to see one too, to which I sheepishly tried to argue but, at that point had become all to aware of my foolishness to do so. So, I decided it was time to give in and finally face the music for whatever that might be.



The nurse at the clinic began performing the ritualistic gathering of vitals to include the blood pressure test. She not only took the reading once but then a second time before excusing herself and promptly leaving the room only to return moments later with the Doctor in tow. The Doctor then took the pressure reading for himself and looked at me with a very stern look and said "I can't hardly believe that you are standing here right now. You are a ticking time bomb and your not going anywhere but to the ER right now! And I wouldn't expect that you'll be going home tonight!" Long story short I was told that I was in final stages of Congestive Heart Failure and spent the better part of a week living in the Hospital. While in the ER, it was determined that at some point prior to this, I had suffered what the doctors referred to as a "silent" heart attack, which had caused damage to the right ventricle, one of the large chambers of the heart. The damage was to the extent that it was reduced to only operating at 40% it's normal capacity and that this, in turn was causing my kidney function to be greatly reduced, which further caused fluid to backup throughout my body settling in my legs and now filling my lungs so that I was, in effect, slowly drowning. 

After release, I was assigned to a panel of Doctors to monitor and educate me through the adaptation toward a new life routine that would accommodate the new lifelong heart condition. And so it went for a few months until I experienced another odd event in the most peculiar way. I was vacuuming my car and happened to lean over an open door threshold to reach inside when, suddenly I felt a SNAP and the associated collapse within my chest as though I had broken a rib. I hadn't ever experienced a broken rib before and so, was not certain that that was what had actually happened. It was painful, but not quite as painful as I had assumed that a broken rib would be. However, it was much more difficult to deal with the following day and took quite a while to settle back down to normal, but the point being, that it didn't require much pressure at all to do this. Again, I chose not to have it examined by a doctor, but just to let it go and heal on it's own, still not convinced that I was actually breaking any bones, but perhaps stressing some connective tissues or something less dramatic. From that point onward I began having this experience more and more over the slightest situations, such as just rolling over in bed, setting up a tent etc.. Still not tying anything together.

By now, my weight had grown to be a very focal concern, both for me and my new friends at the heart clinic, who could not comprehend how, if I were telling the truth about my daily diet and exercise regimen, that I could possibly still be gaining weight like I was. And for the most part, scoffed and complained at my goals and efforts to stay under 1200 cals. per day. The other oddity at hand was the fact that the majority of the weight was gathering around the mid-section, primarily in the front or belly, which by now, had grown out and produced purple colored tiger-striped stretch marks, something I'd never seen or experienced before.
Excessive Distension & associated
purple Striae aka stretch marks


Over-all, just my skin texture, appearance and tone was transforming and becoming more papery by the day. I began to notice that I could tear it open with very little effort creating deep serious wounds to the result of simple, minor, incidences. And to do anything, even as simple as just placing my hands in my pockets to retrieve some change, would result in blood bruising under the skin that would last for long periods of time before fading away.

Easy delicate skin tears and slow to heal bruising

It was at this point that my concern for these symptoms was becoming greater and I would point them out to the doctors at every occasion that I was to see them, but there was never any concern nor suggestion to investigate any further. Most of the focus was always put on the weight gain issue and how to reverse it without reducing more calories.It was constantly being addressed by increasing my diuretic meds. to possibly shed off more water thereby decreasing my weight and hopefully not burning up my kidneys in the process. This was day to day routine that took hold over a period of months leading into the early part of the present year 2016.

It is from this point and the events to follow that proved to be.....


The Turning Point

   For a while, things seemed to settle down a bit, though I still continued to slowly but steadily gain weight and many of the other symptoms continued to be present. All and all it was annoying, but there were no big changes or events to stir me into any forensic state of mind or activity.

 It wasn't until mid April, when I had an event where I spent the day dealing with a dull aching pain in my gut that I just could not resolve no matter what. It felt like a bad case of trapped gas and so I began looking for home remedy's to try and relieve it. but as the day progressed onward, the pain was growing more intense. It finally reached a point where it felt as though I would certainly explode or rupture some internal organ, if I did not seek some form of medical treatment. I struggled with this decision thinking about how infinitely embarrassing it would be to show up at the ER only to be told that I was gassy and that I should just take some ant-gas medicine and lay down for a while. But eventually when I was pinned to the floor and squirming all around to escape the pain,...Enter second oldest son, who promptly suggested that we should make that dreadful trip, once again, over to the ER. 

After checking me out with x-rays, blood work, etc.. the Dr. tells me I have what is known as perforated Diverticulitis, which turns out to be the formation, and inflammation of a pouch to the large intestine that has also suffered a slight tear where fetal, toxic waste can then leak into the abdominal cavity and become a rather dangerous situation. And so (yep, you guessed it), into the Hospital I go (again!) Then, this Doctor, as he is leaving the room, turns again to ask, "So, by the way, how long have you had those fractured ribs?" At first I was a bit stunned and did not know what to say, only that I was not aware that I had any broken ribs, to which he replied that they had shown up in the x-ray that they had just taken and that he was curious because there was no record of them being reported in my medical file. I explained the situation of the ease and frequency that this was occurring along with a quick run down of the additional items that I had been trying to draw attention to and he was a bit taken back by this information and then asked me if I had ever considered being checked for Autoimmune Diseases by a Rheumatologist? I said no, to which he handed me a card and wrote the name and number of one that he knew and thought was very good and suggested that I give her a call to check into it a little further. This was the first I had ever been given the idea that all these symptoms might just be tied together and part of a greater over-arching problem. And alas, that seed was sown.

After a few days for observation in the hospital, I was sent home with an antibiotic prescription of Levofloxacin which I took as instructed. However, what was not revealed at the time, was that there is a fairly known side effect with this drug that has a tendency to attack tendons causing them to tighten and in some cases, to snap, which, of course was the case with me. After a few days of being on the antibiotic, I noticed the tightening of the tendons in both of my feet, making it exceedingly difficult to simply just walk until finally, one morning I had stepped off of a curb and an excruciating snap accompanied by a wash of pain like I had never experienced before came rushing up my leg from my ankle. I'm talking about nearly passing out kind of pain where you begin sweating like mad become instantly dizzy and nauseous and start phasing in and out! Fortunately and unfortunately, I was just coming back into the country, traveling home but still about 900 miles of planes, trains and automobiles to negotiate before I would be within range of my familiar medical sphere. Throughout the remainder of that journey, I watched as my ankle displayed and exchanged a vast array of concerning colors. Upon returning home, It was about three days before I was able to get in to see my doctor. Thinking that I had just severely sprained the ankle, I decided not bother the ER. with this one either, after all, why should they get all the fun? And besides, they were beginning to recognize and call me by name whenever I walked into the place. Another feature that I was not all that crazy about.

When I did finally see the doctor, they immediately started uttering something about "DVT", which I did not understand as I was still expecting to confirm and discuss the proper handling of a bad, bad sprain. Instead, after completing yet another x-ray, I was introduced and educated on DVT, which turns out to be Deep Vein Thrombosis, AKA blood clot, in the lower left leg. Little did I know at the time, the trouble that this little monster would create with all the developing and upcoming issues, but again, I was released with yet another prescription, this time it was a blood thinner called Coumaden or, in my case, the generic version called Warfarin to help prevent further or additional clots while the newly discovered one slowly dissolves. Which they automaticaly assume or plan to be a six month endeavor. What I did not know, was that many things such as certain foods containing specific vitamins and or minerals, and a vast array of pain, as well as other types of important medications, are known to interact with the thinner and cause it to become ineffective, and so it is given the right-of-way and is the trump to just about any other treatment or medicine that you are currently taking as well as any that may be needed in the near future. And so this little bonus feature has and does cause me much grief as it drives the decision to put all other treatments I have needed, to go on temporary hold.

Upon release, I was given a referral to an Orthopedic surgeon to further investigate the pain in my calf and ankle, which would require an MRI for soft tissue imaging. It took about a week to get into the see the Ortho. who was required, by the insurance company, to administer another X-ray before he could be granted the approval to perform the MRI. This took yet another two weeks to establish and so, at this point, it has been about 4 weeks since the incident had originally occurred. I wondered if it even mattered at this point. But, when the results finally came back and the Doctor was able to see me again for review, it was confirmed that the Achilles tendon was completely severed, which would normally instigate a small surgery to correct, however the master blood thinner dilemma dictated that the corrective procedure be withheld until the end of it's suggestive term of 6 months.So I was told to return to using my walker that I had obtained during the Cellulitis ordeal and that I would receive my very own custom made spring loaded, aircraft fiber foot to calf action brace - whoohoo! At this point I am begging to feel like a medical accessories testing laboratory. Which, for me, was turning out to be a non-profit occupation!

Meanwhile, during and through the tendon drama, I had yet another issue crop up which, was that I developed an acute pain within the ball socket  of my left hip, which again became so painful that it drove me back over to the ER. This time though, they blamed it on the recent events with the blood clot and the torn tendon, assuming that the pain was created by walking around with improper alignment, aka, with a limp. They wrote me yet another prescription for Percocet as a pain reliever and sent me home. And at this point, it is the Pharmacists who are beginning to call me by name and invite me to family dinners, reunions etc..
And this is just my breakfast portion

It was not more than 24 hrs later that I suddenly developed a new pain, but this time was located in the right side groin area and came with a reddening rash that quickly ran down my upper leg and settled just on top of the knee cap. Another short trip to the ER later, revealed that I had contracted cellulitis and then the real fun began! Again I was admitted to the Hospital as they hooked me up to a super high power antibiotic and some heavy hitting pain medication as my condition rapidly declined. I watched as all the skin on my leg literally began to form huge blisters, pop, bleed and peel as if the skin on my leg was melting away. After about five days of this nasty painful torture, I was sent home and set up with home nursing care and physical therapy. I was restricted to primarily bed rest and very minimal activity as I was unable to walk under the spell and condition of this terrorizing monster. Just to get a little more real with it, here are a few nasty visual references to the physical devastation:





I know that this post is excessively long, and I gently apologize for that. But, I do think that there is a place and or purpose for bringing out all the events  as they have actually unfolded. So, it is at this point that I must throw in a few missing details that were developing almost simultaneously with each other making it somewhat difficult to maintain a chronological format during this time frame as things were beginning to overlap in their development. These symptoms include the following:

- hair Loss in significant amounts.
- Decreased / blurred vision
- Stronger emotional swings
- Advanced Depression
- Muscle Fatigue
- Aching Joints
- Decreasing Memory
- Poor Cognitive performance / Mental Fog
- Viscous, relentless, Insomnia
- long periods of Cold Sweats

Though some of the symptoms as described above have reared their ugly faces, appeared, expelled their torture and then retreated, Unfortunately, a vast majority of them have just been cumulative and plague my body on a daily basis with varying degrees of presence from one day to the next.

Anyway, It was the combination of such an onslaught of back to back health issues combined with the ER's seedling statement that led me to finally dive into a deeper research of conditions that might have multiple symptoms. I began my quest by following the suggestion of the ER doctor and called upon my Primary Physician to examine the possibility of any auto-immune diseases, to which she passed on to inquire with a local but reputable Rheumatologist, who requested that we submit some blood work for testing. After a couple of weeks, we received a response back that stated that there was not enough substantial evidence to any suggestion of an autoimmune disorder and that for the most part, all markers were within normal ranges with the exception to those that were most likely tied to the existence of current conditions, such as my blood clot and torn Achilles tendon. As you can probably imagine, this was a bit disheartening but a relief all at the same time.

This sort of Cat-n-Mouse game of guess, test, reject and repeat, went on for a little while until it was obvious that my Primary Physician had grown weary of the pursuit. What I discovered later, was that she was on the verge of making a career move that would take her out of her current position and location and move her into the more specialized field of Sports related Orthopedics and so, needless to say, her mind had already begun to switch perspectives and interest. So having lost my main support line encouraged me to pick up my own information shovel and do some digging of my own, good-ole Google style.

One night, as I sat there fleshing out various Google searches for symptoms that I had been experiencing, and following those leads and ties to other, more complex causes, etc.. I decided to just type in ALL the symptoms, separated by a comma of course, and hit enter to see if that might not be enough to actually stump the ole Google Master once and for all! (wouldn't that be something?), but nope, suddenly I was staring at article after article referring to some condition known as Cushings. However, in the short presented snippets, I could see that a lot of them were talking about this condition as it applied to dogs, cats and horses which, evidently is much more common than with humans. But I did happen to stumble upon one that seemed to be describing a human experience with the disease. Not far from reading the first full paragraph, I was nearly reduced to tears. My heart began to race as I moved from one symptom description coupled with matching diagram or photo, to the next. The article covered eleven specific signs to which I could identify in myself for ten. The only remaining sign was gender specific to women as it had to do with the disruption of their regular menstrual cycle. Needless to say, I was quite blown away at this monumental discovery! As I spent the remainder of my night digging up and devouring more and more information on this Cushings Disease. I became more and more thoroughly convinced that this was the very monster that had decidedly and effectively taken up residence within my body.

This event marks yet another significant turn in the overall journey, but not necessarily the realization of a more downhill slide to the finish line. It was to to the contrary that the struggle became a little more intense as well as a bit more frustrating. But, for the sake of your precious sanity and that of my of my own, I have decided to save and present that part of the story for yet another promisingly long post.

Regardless of the missing latter half of the story, what is more at this very moment is that, as of today I am just T-Minus four days until my Surgery. Something that has been long awaited for and yet most increasingly terrifying to perceive all at the same time. This entire journey has managed to slowly swallow me up in every detail, consume and discard that which was the general pattern of my life and forever alter it to some unidentifiable existence for which I have struggled to relate with. I am excited to begin winding back down to some new place of being, which has been a difficult concept for me to imagine. Cushings has become so intertwined with my identity and purpose that I am not sure what a "new" me will be about and believe it or not, I find myself a little anxiety stricken over that. But I am prepared to just accept one day at a time as it comes to pass and to strive to thoroughly appreciate every precious moment that I am blessed to behold.





















Wednesday, September 7, 2016

Top of the Hill



Alas, for at least what I have perceived to be, that place where every thing changes. Where hope has gradually taken up residence and where the scenery, momentum, and attitude are expected to flex effortlessly toward the optimistic and become naturally energetic to the weary soul. That long elusive top of the hill, has finally come upon the horizon.

 I am speaking, of course, to the official clearance and approval for surgery and the phone call securing a date and time for that to occur. I received that momentous phone call today and the date has been set for Friday, Sept. 30th 2016. I was given basic instructions on how to begin preparing for the procedure which includes notifying my anti-coagulation Dr's on forming a game plan to reduce the blood thinning medications that I am currently taking to treat a blood clot in my lower left leg so that I will not be at risk to bleed out during the surgery. 

I have been amazed at the onset of emotional tides that followed that phone call. From excitement to anxiousness, to fear, to nervousness, to doubt, to hope and etc... around and around they went leaving me nauseous, confused and spent. After a while, I began to question.... a lot..., like, is it really here now?, is this really happening?, Has any of this really happened? It seems so much like a dream. Do I really have Cushing's?, How could I have this rare disease?, How did all this happen?, Where did my life go? Where did the old me go and who was that guy really? I don't even know anymore. I see pictures of that guy floating around and he seems so different, was that just a dream? What will life be like after the surgery? How long will it take to feel "normal" again?, Heck, what is normal anyway? My mind just leaped off the deep end to swim in the pool of uncertainty grasping at waves of variables and trying desperately to sew them together. 

I am hopeful that this procedure proves to be the pivot point that my head and heart have been so eager to target. And that, however gradual it may prove to be, that I will just be satisfied with even the slightest perception of positive results. 

I know that this journey is far from over and ironically, as weird as it will sound for me to say it, I sense a strange sort of sadness over the pending loss. It has become such a part of my every day existence. An involuntary schooling in patience, in sympathy and empathy, in ever expanding appreciation of life, love and true liberty, of morality and integrity, of strength and purpose. Cushing's has taken my once harried and hectic life and generously applied the brakes. Slowing me down and forcing me to live more in the moment and to become much more sensitive and aware of the subtle preciousness of life. For all the so called negative experiences that I can easily produce, I am equally aware of a beneficial gift bestowed upon me as a result of being tethered to the tigers tail. I see where the application of this to my story is just another aspect of individuality. Those little details that color our character and cumulatively sets us apart from one another, while supplying the very thread that also links us together in a weird sort of universal dependent unity. 

Yes I am honestly a mixed up bag of emotions, thoughts and feelings but, I have, to one degree or another, been like that since long before Cushing's took it's relentless grip on me, and I believe that I will continue to be until the dissipation of my very last breath. Having Cushing's just amplified those traits within me. For good or bad, I know not, but, I do look anxiously ahead at the top of the hill taking just one miraculous step at a time.

Monday, September 5, 2016

Inside my Head Part 2

As a follow up to my previous post, appropriately and creatively entitled "Part 1", I thought I should reveal the resulting prognosis from the IPSS procedure that was described. The "good" news is, that the test revealed substantial evidence that the pesky tumor is, in fact located on the Pituitary Gland inside my head.

For those who are as anatomy deficient as I was up until this gem of disease forced me into alternative Med School. The Pituitary Gland is a little nubual gland much like the "punching bag" looking thing that hangs in the back of your throat (Uvula). However, it is located dead center of the skull. Directly behind the eyes centered at the nose and directly between the ears. It occupies a small cavity just below the brain. The dictionary reference:

"the major endocrine gland. A pea-sized body attached to the base of the brain, the pituitary is important in controlling growth and development and the functioning of the other endocrine glands"


Image result for pituitary gland

Not a very "convenient" location, when the discussion of surgeries begin to arise! 

Just to be clear, in the case you have not learned it yet, Cushing's Disease (basically) is a condition where a benign (non-cancerous) tumor has developed on or withing the Pituitary gland and effectively taken over control of the production of a hormone called  Adrenocorticotropic hormone (ACTH), also known as corticotropin (INN, BAN), which controls a slew of bio-functions including the regulatory monitoring of Cortisol production from the Adrenals. This tumor, by contrast, is non-regulatory and therefore causes a continual flood of ACTH to be released into the body, which in turn triggers a constant flow of Cortisol infusion from the adrenals, which reeks all kinds of havoc on a number of the body's biological systems.

The manifestation of symptoms is fairly slow going at first and most often of a type that is recognized as fairly common stand alone conditions that generally are treated as such. Therefore, the pursuit of any underlying condition is usually postponed for quite a long period of time.


Though there are a number of symptoms that seem to occur as variant and unique to the individual themselves, there is a list of symptoms that seem to be tell-tale as they collectively manifest. These symptoms include:


- Unusual, uncontrollable excessive weight gain. Particularly accumulated around the abdomen.

- Weight gain in the face and neck generally referred to as "moon face".

- Accumulation of fat in the back of the neck generally referred to as a "buffalo hump"

- Pink or purple tiger striped stretchmarks (striae) on the abdomen, thighs, breast and or arms.

- Thinning, paper-like skin that tears or bruises easily.

- Persistent and or often times recurrent skin rashes or infections.

- Onset of Acne

- Thicker or more visible body and facial hair (hirsutism) (women)

- Irregular or absent menstrual periods (women)

- Decreased or absent libido

- Decreased fertility

- Erectile dysfunction

- Severe fatigue

- Muscle atrophy resulting in weakness

- Bone fragility (Osteoporosis) particularly in ribs and feet

- Unusually high blood pressure

- Type 2 diabetes

- Excessive, continuous hair loss

- Depression, anxiety, irritability, mood swings

- Cognitive difficulties

- Chronic headaches

- Insomnia 

- excessive, unwarranted sweating especially at night

If you have noticed a gradual increase in and especially as an accumulation of, any of these symptoms, I would strongly suggest that you mention Cushing's to your Primary Physician and ask (demand) that a test be run for urinary Cortisol levels. 

One thing worth mentioning here is that unfortunately, as of this time, Cushing's  is still considered a rare condition and is most often dismissed initially as a probable diagnosis. In my case, I quickly found myself head-to-toe with just about every turn and mention of the idea. I have yet to put to words my drama filled story of the various trials, tribulations and victories just to get a foothold on the consideration of testing for Cushings. However, I plan to do so very soon. 

The IPSS test results that I mentioned at the beginning of this post in conjunction with the long line of tests leading up to this procedure, suggests very strongly that I, in fact do have the tumor and that it is definitely located in the pituitary. The procedure is also instrumental in giving more precise location information giving the surgeons a sort of map or GPS coordinates for getting to the tumor for extraction. I was a bit surprised to find out that, supposedly, there is no app. for that!

The extraction surgery is a procedure called Transsphenoidal surgery: This is the most common way to remove pituitary tumors. Transsphenoidal means that the surgery is done through the sphenoid sinus, a hollow space in the skull behind the nasal passages and below the brain. The back wall of the sinus covers the pituitary gland

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So, as it stands, this is where I am in my journey with all of this. It has been a longtime coming to finally find myself here. It is almost surreal and hard to accept. Honestly speaking, there were many a time where I did not think that this day would actually arrive. And then there is the odd sensation of realizing that you have been routing for a diagnosis of a terribly dreadful and debilitating disease. Today, and every day at this point has become overwhelmingly significant and the individual steps toward treatment and recovery have gained a greater stride!   




Thursday, September 1, 2016

Inside My Head Part: 1


And so it came. The "big" day. The day that I had begun to feel as though would never really come. The day that, like so many others, filled my heart with overwhelming emotions of every kind. From anxiousness to anxiety, from excitement to fear, from anticipation to aggravating frustration. They all visited me for periods of time and with an increasing frequency as the scheduled event slowly approached.

I am speaking of the IPSS procedure (Inferior Petrosal Sinus Sampling). A procedure that is typically performed once a series of confirming tests have determined that you are most likely a Cushing's victim and that the associated source of trouble, aka tumor, is most likely situated on the Pituitary Gland as apposed to the Adrenal or a few other potential locations within the body. This procedure is usually reserved for much later on in the diagnostic process after a long series of confirming blood & Cortisol tests and a specific Pituitary MRI scan. If you make it this far, chances are that determination of the disease has gone from if, to where.

The procedure itself is only slightly invasive where, at least in my case, a pair of surgeons and a handful of associated nurses prepare you in a way that feels very much like a full blown surgery. Two small incisions are made on either side of the groin area and a small catheter is inserted to each, which provides the entryway for two small tubes to be fed up through the body via your vein path to the head. The tubes are positioned on either side of the Pituitary Gland and collect drainage samples coming from the gland or, as is the case for Cushing's patients, from the tumor. After the initial samples are taken, a contrast is introduced to the area and then another set of samples is extracted. These samples are then used to determine or further confirm the fact and location of the tumor on the Pituitary which then helps the Surgeon assigned for removal to determine the best path for entry when that time comes.

The procedure itself was relatively painless. I did feel some weird unexpected pressure that was relatively similar to sever sinus pressure inside my head and directly behind the eyes. I also believe that, on several occasions, that I was able to hear a sort of popping or scraping as they made adjustments to position the tubes properly. Overall, the procedure took an entire day, but broken down, it was like two hrs for prep., two hours for the actual procedure and then a mandatory four hrs. for recovery.

As with most of the tests, procedures, consultations, etc.. I think I amped up the experience in my head waay beyond what it actually turned out to be, which obviously caused more grief than good. I think, that for me at least, that I seem to think that each of these events will somehow derail the process and that the result is going back to the drawing board and starting all over again from the very beginning, which just flat out wears me out to even think of such a thing!

As far as I know, this is close to the end of the line for all the preliminary diagnostics leading up to actual treatment and recovery. Next stop should be removal surgery, which I have been told is estimated out about two weeks from today. I am just waiting on the phone call from the docs to review their findings and to authorize the scheduling.


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

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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.