Monday, April 30, 2012

Day 30 of Cushing's Awareness: April showers bring May flowers.

Today is April 30th and that means that I have completed the 30 day challenge to help raise awareness for Cushing's. I am really glad that I have been able to share my journey with people and I really hope that somehow my story has made an impact or that it will make an impact on someone.  When it comes to your own health please remember that no one knows your body better than you.  If something is wrong and you feel it, please believe in yourself and trust your instincts.  Never give up on finding answers. Sometimes the path to finding those answers is a very long and bumpy one, but with strength, courage and a whole lot of research you can and will find those answers.  It's also so important to have a good support system in place.  It's not always easy for those who are living on the outside of an illness to understand the daily struggles we have, but it's important to surround yourself by people who care and believe in you.

I can't speak for everyone, but I know for the majority of my illness my family has been very supportive of me. Initially when you bring up a rare disease to your family they don't want to believe that it is even in the realm of possibilities.  Cushing's is one of those diseases that most people just don't understand.  We can eat a fat free, no carb, low calorie diet and exercise and still gain weight.  While trying to exercise we could damage our bodies even more because Cushing's destroys muscle and bones.  I managed to break my foot by stepping on a piece of dog food.  Who breaks their foot on a piece of dog food?  That is just one of the many things this disease has done to weaken my body.  

This top 10 things to not say to someone with a Chronic Illness started floating around Facebook a year or so ago.  My illness is actually caused by stress, so number seven is quite laughable.  Cortisol is a stress hormone, so it is indeed stress.  As for number five, it actually is/was in my head! Just thought I would share this because you really do hear some of these things when dealing with a chronic illness such as Cushing's Syndrome.

In July I am looking forward to going to something called The Magic Convention which is hosted by The Magic Foundation. It is being held in Lombard, Illinois which is a suburb of Chicago.  My Neurosurgeon, Dr. Ian McCutcheon will be speaking at it along with several well known Endocrinologists and last but not least a dear fellow Cushie who will also be speaking and is a Clinical Psychologist. Dr. Friedman has been a guest speaker for The Magic Convention in the past, but will not be there this year.  I am really excited to hear them talk about Pituitary disorders that effect Adults such as Cushing's, Adult Growth Hormone Deficiency and Panhypopituitarism.  However, most of all I am looking so forward to meeting some of my fellow Cushie friends who I have gotten to know and love over the years.  One of my dearest online friends is coming all the way from Canada and I cannot wait to give her the biggest and most gentle bear hug on earth!  These are my people, the ones who understand every little thing I am going through and it's something that no one else on this earth can fully understand except them.  I just can't wait to be in a room full of freaks like myself and feel NORMAL for the first time in my life. I think I'm more excited to meet them and go to this convention than to go to Disney and that is saying a lot, folks.  

Thank you for sharing in my journey and I hope you will continue along with me as I update on my progress.    One day I will be rid of this disease, but I will always carry the scars of my battle.  

Let's just pretend she is singing Mrs. Zebra. ;)

Sunday, April 29, 2012

Day 29 of Cushing's Awareness: Why I blog about my journey

When I decided at the last minute to join in with several other Cushie's to do the 30 day challenge of blogging about Cushing's to help raise awareness, I had no idea how much time and effort would go into writing and how much it would grow to mean to me.  I've spent hours every day thinking about what to write, reading my own medical records, looking up information and just reliving my own journey that has gotten me to this point in my life.

I don't know why I decided to do it, but I'm glad I did.  It's been very therapeutic for me to write it all out.  I've been meaning to do it for a long time, but just never had that fire lit under my butt that got me motivated enough.  I figured that writing about my journey may someday help someone else who is on their path looking for answers.  Maybe it will encourage someone to never give up, keep looking for answers or just help someone to understand they are not alone in this.  Cushing's can make a person  feel very isolated, but with the power of the Internet it has brought so many of us with this "rare disease" together.  We are able to share our own trials and tribulations and also mourn the losses of those that our community has lost.  This blog has also helped my family and friends to better understand what it is I have been through and continue to go through on a daily basis.  Every day I wake up and my goal is simply to survive the day.  One day I hope and pray that I will be able to plan so much more than that, but for now I am grateful that I am alive and still able to function as best as my body allows me.  It's not as much function as I'd like, but I know there are many out there that are dealing with so much more than I am.  It isn't easy being me, but it's the only me that I know.  I embrace it, but I will always strive for more.  I was born to fight and fight I shall.

If this disease does happen to defeat me, it is nice knowing there will be a piece of me forever left on the Internet and that some day my children can read it and know that I never gave up.  I fought to get better and no matter how big the obstacle I kept on because I do not want my children to grow up without me.  It's amazing how powerful love is.  There is nothing in this world that can defeat it.  I know that sounds cheesy, but it's my love for my family that keeps me sustained during my darkest hours.  It brings me back out of the darkness and allows me to see that there is always a reason to fight and always a reason to hold on to hope.

If this blog has touched just one person and helped them to better understand what Cushing's is then I feel that somehow my misfortune has a purpose.

Saturday, April 28, 2012

Day 28 of Cushing's Awareness: Arterial bleeds post op

Today I want to talk about some of the complications that can arise after Transsphenoidal surgery, specifically bleeding.  As with any surgery there is a risk of complications, infections and bleeding.  However, I do not feel that I was properly informed on exactly what to expect if something rare did indeed happen.  What happened to me with my arterial bleed was very, very rare.  It has been noted that it was possibly from my arteries being in a weakened state from Cushing's itself, but after doing some research I am not 100% sure this is accurate.

There are a lot of things that could have happened, but what happened to me on day 13 post op has actually been seen in several rare cases and was considered a delayed epistaxis because it did not happen during the surgery itself.  There is a possibility that my arteries were somehow injured during the procedure itself, but I am fairly confident that was not the case. However, I will never really know. They talk about the possibility of a carotid or sphenoplalatine artery injury and how there can be something called a false aneurysm or pseudoaneurysm that could have been to blame for what happened to me.

I am concerned by what I read in this PDF file because there were several instances where the bleeds happened again throughout a two to ten year span.  One patient died while trying to control the bleed.  I will not lie, I fear every single day that this artery will just start bleeding again.  I have such intense pressure inside of my head and sometimes something just feels really off inside of my sinuses like it did the night the bleed happened.  The PDF is a long read, but there is a lot of information pertaining to the rare arterial bleeds that can happen after this type of surgery.

I wish that I had known there was more of a possibility of this happening, but then again perhaps it's so rare they just don't mention it.  Honestly, knowing would have in no way prepared me for what I experienced that night.  It is one of those moments in my life that will forever plague me and make me feel feelings I really don't care to feel.  It was by far the most traumatic experience of my life.  Now, I have to really fear that it COULD happen again out of the blue.  Add that in with the possibility of needing sinus surgery which means they will be in that area again makes me an absolute mess.  I feel I could face any challenge life can hand me, but thinking about going through another artery bleed like I did that night makes me seriously want to crawl into bed and cry.  I don't want to ever go through that again.

I think that some type of angiography should have been done on me to really investigate the situation fully, yet it wasn't done.  I feel that I am a ticking time bomb.  I have not felt right since that bleed and what if there is still something massive just waiting to happen? I've said it before and I'll say it again, being rare and complicated stinks.

Arterial Injuries in Transsphenoidal Surgery for Pituitary Adenoma:
The Role of Angiography and Endovascular Treatment
J. Raymond, J. Hardy, R. Czepko, and D. Roy

PURPOSE: To define the role of angiography and embolization in the treatment of patients who
have arterial injuries during transsphenoidal surgery. METHODS: We retrospectively studied the
arterial hemorrhagic complications, their management, and the clinical outcomes that occurred in
21 of the more than 1800 patients who had transsphenoidal surgery for pituitary adenomas.

RESULTS: Of the 21 patients who had complications, 17 had internal carotid injuries and four had
injuries of the sphenopalatine artery. Angiography was performed in 18 patients. Bleeding occurred
and was controlled during surgery in 16 cases. Delayed epistaxis occurred in 10 patients, including
five whose surgery was uneventful. After internal carotid injury, the most frequent angiographic
findings were carotid occlusion (eight patients), stenosis (five patients), and false aneurysms (three
patients). Internal carotid balloon occlusion was performed in five patients. No rebleeding occurred
in patients who had complete carotid occlusion either from surgical packing or balloon embolization.
Two of the patients who had carotid stenosis after surgical packing had delayed epistaxis
necessitating balloon occlusion. Injuries to the sphenopalatine artery were successfully treated by
surgery (one patient) or by endovascular treatment (three patients) without complication. Three
deaths and five permanent deficits were directly related to the arterial injury or its treatment.

CONCLUSION: Profuse bleeding during or after transsphenoidal surgery should be investigated by
angiography. Lesions of the sphenopalatine arteries are effectively treated by embolization. Internal
carotid injuries are best treated by carotid occlusion to prevent life-threatening epistaxis.

Index terms: Adenoma; Surgery, complications; Pituitary gland, neoplasms
AJNR Am J Neuroradiol 18:655–665, April 1997

Friday, April 27, 2012

Day 27 of Cushing's Awareness: The different types of Cushing's.

In my blog I have mentioned Cushing's Disease as well as Cushing's Syndrome.  They are the same, yet they are different. 

Cushing's Disease points specifically to a pituitary source where there is an overproduction of ACTH, however it can still be termed Cushing's Syndrome.  All other endogenous sources that are listed below are coined as Cushing's Syndrome, but only a pituitary source gets the name Cushing's Disease. 

Information taken from the NIH website.

Pituitary Adenomas

Pituitary adenomas cause 70 percent of Cushing's syndrome cases,1 excluding those caused by glucocorticoid use. These benign, or noncancerous, tumors of the pituitary gland secrete extra ACTH. Most people with the disorder have a single adenoma. This form of the syndrome, known as Cushing's disease, affects women five times more often than men.

Ectopic ACTH Syndrome

Some benign or, more often, cancerous tumors that arise outside the pituitary can produce ACTH. This condition is known as ectopic ACTH syndrome. Lung tumors cause more than half of these cases, and men are affected three times more often than women. The most common forms of ACTH-producing tumors are small cell lung cancer, which accounts for about 13 percent of all lung cancer cases,2 and carcinoid tumors-small, slow-growing tumors that arise from hormone-producing cells in various parts of the body. Other less common types of tumors that can produce ACTH are thymomas, pancreatic islet cell tumors, and medullary carcinomas of the thyroid.

Adrenal Tumors

In rare cases, an abnormality of the adrenal glands, most often an adrenal tumor, causes Cushing's syndrome. Adrenal tumors are four to five times more common in women than men, and the average age of onset is about 40. Most of these cases involve noncancerous tumors of adrenal tissue called adrenal adenomas, which release excess cortisol into the blood.
Adrenocortical carcinomas-adrenal cancers-are the least common cause of Cushing's syndrome. With adrenocortical carcinomas, cancer cells secrete excess levels of several adrenocortical hormones, including cortisol and adrenal androgens, a type of male hormone. Adrenocortical carcinomas usually cause very high hormone levels and rapid development of symptoms.

Familial Cushing's Syndrome

Most cases of Cushing's syndrome are not inherited. Rarely, however, Cushing's syndrome results from an inherited tendency to develop tumors of one or more endocrine glands. Endocrine glands release hormones into the bloodstream. With primary pigmented micronodular adrenal disease, children or young adults develop small cortisol-producing tumors of the adrenal glands. With multiple endocrine neoplasia type 1 (MEN1), hormone-secreting tumors of the parathyroid glands, pancreas, and pituitary develop; Cushing's syndrome in MEN1 may be due to pituitary, ectopic, or adrenal tumors.
1Nieman LK, Ilias I. Evaluation and treatment of Cushing’s syndrome. The Journal of American Medicine. 2005;118(12):1340-1346.
2Govindan R, Page N, Morgensztern D, et al. Changing epidemiology of small-cell lung cancer in the United States over the last 30 years: analysis of the surveillance, epidemiologic, and end results database. Journal of Clinical Oncology. 2006;24:4539-4544.

Endogenous versus Exogenous:  Endogenous means produced or growing from within. Exogenous means originating or produced outside of the body.

There is also the most common type of Cushing's Syndrome which is the exogenous form and it's called Iatrogenic Cushing's Syndrome.  This type of Cushing's is caused by glucocorticoids that are prescribed by a physician for other diseases or ailments.  People who suffer from allergies, asthma and even organ transplant recipients who need to keep their immune systems suppressed need these type of steroids in order to function, but it can come with the cost of developing this form of Cushing's Syndrome.  Usually tapering or lowering the dose will alleviate all symptoms, but for some it may not be an option to get off of the steroids.
In the Cushing's community we usually refer to this type as steroid induced Cushing's.  

There is even something called Pseudo-Cushing's Syndrome.

"Pseudo-Cushing syndromes are a heterogeneous group of disorders, including alcoholism, anorexia nervosa, visceral obesity, and depression, which share many of the clinical and biochemical features of Cushing's syndrome. The mechanisms responsible for the genesis of pseudo-Cushing's syndrome are poorly understood. It has been suggested that hypercortisolism of pseudo-Cushing syndrome may be the result of increased hypothalamic corticotrophin-releasing hormone (CRH) secretion in the context of a hypothalamic-pituitary-adrenal axis that is otherwise normally constituted. The substantial overlap in clinical and biochemical features among several patients with Cushing syndrome and those with pseudo-Cushing syndromes can make the differential diagnosis difficult. Distinguishing between pseudo-Cushing's syndrome and true Cushing's syndrome is critical for preventing the unnecessary and potentially harmful treatment of such patients. This brief review summarizes the main pathophysiological events of pseudo-Cushing syndromes and provides a useful strategy for differential diagnosis."

Pseudo-Cushing's Syndrome is explained in great detail in this PDF on Dr. Friedman's website.

Feeling confused?  Imagine all the testing necessary to determine which type you specifically have.  

Thursday, April 26, 2012

Day 26 of Cushing's Awareness: 15 years at a glance.

Today my husband and I have been married for 15 years!  I am really glad that I've been lucky enough to be married to a great man who has stood by me during some pretty rough times.  When we got married I was already sick, but I didn't know I was sick.  I didn't even know what Cushing's Syndrome was, but I knew that my weight and weight gain was not normal and something always seemed off about it.  I was still able to function as a normal person for the most part.  Almost all my jobs during that time had crazy hours, so I was always up until 5 in the morning, so maybe I never was aware just how off my body was.  It seemed normal for me to be up all night and then finally feel myself getting tired when the sun would come out.  

I wish I could turn back the clock and know all that I know now.  Back in 1997, the Internet was not a fraction of what it is today.  Most households didn't have a computer or the Internet yet.  I suppose even if I had known what I know now, I still wouldn't have been able to connect to all the other Cushie's online and read about all their stories.  The stories that have inspired me, given me the courage to keep on my path, the strength to continue to learn more about Cushing's and help fit all the pieces together.

It is truly amazing and crazy at the same time how much the world and myself have changed during those 15 years.  I hope that in another 15 years I am able to look back and reflect how much my life has changed for the better.  My kids will be adults, possibly in college, and I will be better and able to look back and reflect on how something so wonderful can be born from the depths of such a devastating illness.  I will defeat this. 

I had to have a CT of my sinuses done today.  They tried putting in and I.V. six times and blew several veins before they called down another nurse to use a Doppler to find a better vein.  It was not a fun ordeal, but thankfully the seventh try was a success and I was finally able to get the CT scan done.  Cushing's has obliterated my veins and today was a reminder of just how sick my body still is.  I hope that they figure out why everything smells and tastes off and figure out why I can't get rid of these infections since my surgery.  Hopefully I will know something soon.  I am just ready to get whatever is going on in there taken care of.  I feel it's hindering my recovery so much at this point.  Here is to hoping that they see what the problem is and the remedy is fairly simple.  I'm not looking forward to the possibility of surgery, simply because I am petrified of them messing in the same area that I had the artery bleed in, but I know that I need to do whatever is necessary to get better.  All I have to do is look at my kids and my husband and the solution is simple.  Fight on.  

Happy Anniversary, Hubby. :)

Wednesday, April 25, 2012

Day 25 of Cushing's Awareness: How having Cushing's has made me a better person.

It's not easy to think of the good when you have an illness like Cushing's, but today I want to reflect on how having this disease has made me a better person and the lessons it has taught me that have forever changed who I am and how I see the world differently.

  • I have learned the true meaning of compassion.  
  • I have learned I am a much stronger person than I ever imagined I could be.
  • I have learned to cherish the simple things in life that often get overlooked by the hustle and bustle of life.
  • I have learned that there are far, far more important things in life than money.  Of course I wish I had more to make life easier for my family, but love really does make the world go round.
  • I have learned to never judge a book by it's cover.  I find it very, very important that my children understand to not judge anyone by their appearances or disabilities.  You really never know what someone is going through.
  • Being positive is a wonderful thing, but it is okay to be down and out once in a while.  We are all human after all.  Life isn't always sunshine and rainbows, so why pretend it is?
  • I am learning to accept myself and believe in myself.  I still struggle with this because people are judgmental, but I am trying to come to terms with the fact that I am awesome in my own way, even if close minded people can't see past my Cushie appearance.  It really is their loss if they choose to judge me by my looks alone.  I am so much more than this disease.
  • I have learned that no matter how rough the storm, every once in a while the sun does still come out and shine down on you.  
  • Having Cushing's has allowed me to befriend so many amazing people who are wearing the same shoes I am.  I do not wish this disease on anyone, but without my online support of my fellow Cushie's, well, I really don't know how I would have coped and learned as much as I have today.
  • Having Cushing's has allowed me to see that angels really do exist on earth.  
  • It has taught me to always, always trust my instincts.
  • It has taught me to never give up.  No matter how many times I was shunned, told I wasn't sick, etc.  I never gave up.  I took my much needed mental breaks, but I never gave up believing that I was sick or searching for that one doctor who would finally believe in me.  
  • Doctors are human.  Do yourself a favor and cut your losses if you have a bad one who isn't willing to work with you.  There is someone out there who will believe in you and help you find the answers you seek.  It may not always be the ones you want to hear, but a good one will take the time to believe in you and test you until there is no stone unturned.
  • Always take time to smell the roses so to speak.  You really never know what tomorrow holds and if there is one thing I have learned from having a near death experience it's that it can all be over in a blink of an eye.  Don't sweat the small stuff, just remember what is really important in life.  Your family, loved ones and friends.
  • Always hugs your loved ones and let them know how much you love them.  
  • Always strive for your health and happiness.  You are worth it.
  • Never, never lose hope.  

Tuesday, April 24, 2012

Day 24 of Cushing's Awareness: Dealing with the grief of Cushing's

This will be a short entry as I haven't been feeling so great today.  I have had a bit of adrenal insufficiency and slept the majority of the day away.  However, when I was awake I felt a sense of grief which I do periodically with this disease.

I mourn the loss of all that should be normal in my life, but it is not.  Yesterday I left the house to go to a dentist appointment, then stopped by my mom's to pick up my son and then we went out to eat and hit the grocery store.  I knew that it was probably going to be too much for my sick body, but I just wanted to have a day that felt "normal."  I was feeling sick before I even left the dentist's office, but I kept on because I wanted to be able to spend the evening with my family and just soak it all in.  It's funny how something so many take for granted is something that I look forward to.

I paid for it dearly last night and today.  I knew it was going to be a rough day when last night I was in bed before 1 A.M. and was hardly able to speak a coherent sentence. Plus, the pain had set in so badly I was doing nothing but gnashing my teeth to will it away.  I had two and a half hours of sleep the night before and was running on empty.  This morning I woke with such a headache.  I knew it wasn't a normal headache, it was one saying my body was running low on cortisol from overdoing it yesterday.  I also found myself running to the bathroom more times than I care to admit.  TMI I know, but it is the reality of what I deal with and I promised myself I wasn't going to hold back while writing about what I deal with. I still believe I have Cushing's, but I still cycle so I have low days mixed in with my high ones.  It's such a cruddy feeling.  When I am low I find myself being more depressed than usual as well.

I just hope one day that I am able to look back on all of this and realize that these were my dark days.  I want so badly to be able to take my kids to Disney World.  My daughter, bless her heart has said she wants to become a doctor so that she can make mommy better.  She has a heart of gold and wants nothing more than to see her mom get better so that we can do normal things together.  I just want to be able to feel good enough to go bike riding, swimming, walk around Disney and so much more with my kids.  I just want to scream sometimes "WHY ME?"  "What did I do to deserve this?"  It's a sick and cruel joke to be blessed with two miracles and then not be well enough to do the everyday normal things with them.

On these days I remember my Grandma.  She was sick the majority of my life, but she meant the world to me. It didn't matter what we did together as long as I was with her.  I enjoyed cuddling with her, just talking, making dinner and just being in her company.  I wouldn't have traded it for the world.  I just hope that one day my children can look back and think about me in that same manner.  I don't want them to ever feel like they were short changed because their momma was sick.  I hope my love will be enough to sustain them through these rough times.

Cushing's affects every aspect of my life.  I will not let it define me as a person, but I cannot lie that it takes up entirely too much of my life.  It really needs to go and with a quickness.