Another Way...

Some of you will not believe the following entry but I have to say that this is one of my many experiences with energy healing and I have found it quite helpful. As many of you know I had gone in January as well as taken classes in becoming a healer myself back before I was ill…during my illness all my energy was gone and I could barely muster enough to work on myself much less work on others.

So I once again made my journey to the “healer” and came out feeling more relaxed and healthy than I have in a long time. While my doctors seem confused about what is happening to my body with the random blood results she was confidant when she told me that I was no longer sick. Part of me believes it and part of me wants to because it is easier than the alternative. I do not necessarily feel Cushie again and have mostly good days so that is why I too believe that this may be a healing period where my body is “learning to walk” again.

The doctors are not able to explain my blood results and waiver between a recurrence and some sort of problem somewhere in my body. I love when they say they don’t know but they do think something is wrong. After years of medical school and practicing medicine they have no answers so perhaps that is why I am inclined to believe a person who offers an alternative explanation; one I amble to understand and believe.

The current “healer” explanation would be that my body has been though hell and back beginning with my childhood and culminating with Cushing’s and the battle for the past two years. This resulted in illness. Let’s face it; there is a lot of medical research out there that supports negative experiences resulting in cancer and other rare diseases. These are battles we all must face and for those of you who know me AI have had more than just the battle with Cushing’s. It just happens that this was my last straw. So now my body is in a metamorphosis and I am healing so rapidly that it causes periods of pain and stress to organs therefore causing hormone and other fluctuations in my blood results. Gee, do you think that makes some sense? I do! My body has been so out of whack that it does need to relearn how to work in my genuine self and then once the healing is over I will no longer suffer.

And some people have seen that change in me through this illness. A willingness to stand up for myself and be my own person or as Dr. Phil would say my “authentic-self.” I have to agree that I am at a new place in life and am more content with myself than I have ever been. I have literally let go of my past and no longer do things to get people to love me or like me – the choice is theirs and I have my own choices to make. I choose not to allow these people to dictate my life any longer and to help others because it makes me feel better. Not because I want them to like me or because I expect some reward from the deal. The reward is seeing the help I offer come to fruition. Not many people get to this point. I guess that makes me lucky and thankful I had this disease and maybe still do…the answer remains to be seen by those in the medical world. I am even considering an alternative career path while maintaining my current one.

But for now I think that I am healing and if it is not a full physical healing then let it be one that is spiritual in nature and emotional and whatever else it needs to be to let me be myself. I will never be a religious person but I do believe that I am here with a purpose and now that purpose has changed to helping others, defending and assisting those with rare disease when no one else will. And while that gives me another full-time job it also gives me fulfillment that a “professional” career can never give a person. And now I fight for all those who suffer from Cushing’s and those who had rare diseases because we all have the same obstacles and no archangel to protect them…I will be that person if I am called upon.

I am hoping to start a foundation or some organization to help people get their lives back. Or maybe I will become a traditional healer. Who knows where this path will take me but for now I will do what it takes to pay the bills and put away every penny that I can to help others and to organize help for them. And while I can not work yet I am going to be selling my jewelry and other things to help pay my bills and then whatever is left will go toward helping others like me…whether it is finding a doc, listening with compassion, helping them find a way to get bills paid or waived…whatever it takes there is another way and perhaps the “healer” has something on all those medical docs who seem to not be able to answer. For now I am with the healer in the belief that the universe will provide what I need to fulfill my purpose in life – whatever that may exactly be remains yet again to be seen but through this journey it will emerge…

As the healer said my butterfly will emerge from the cocoon but there is some pain and stickiness that must pass…I just happen to be in that phase. I never told her this was the tattoo that I would get once my scars healed from my thoracic surgery – I had decided this months ago…I saw the tattoo as my rebirth…and that’s exactly what she said…so we await the future and trust the universe will take care of the rest.

Lights at the End of Tunnels?

Note: this may be a strange entry but I’m in a strange mood…

If the past few years have taught me anything it is this...lights at the end of tunnels do exist but only if we believe they do. Having and learning to believe are tasks which are hard to learn as well as teach. While I have learned a lot about myself I have also learned a lot about others during my process – which, for those of you catching up, is two plus years now – not to mention the car accident, pneumonia, mother’s brain tumor, grandmother’s cancer, etc. which all occurred in the past few years.

I have learned there are people who like me, get lost in the tunnel sometimes and lose hope of a light but manage to find it again. I guess we are the “light-seekers.” And then, there are those who wish to stay in the tunnel and refuse to believe in a light at the end because they had a bad day. The “light” resides in us. Light at the end of the tunnel does not have to be a religious belief but can be an act of having faith in something bigger than yourself or in just being you. We all have the ability to find the light, it is just a matter of whether we want to find it and can wait out the bad times. Even when things are dark you may catch a glimmer of light and you have to believe that the glimmer will become something bigger and brighter. Or at least I believe you need to because otherwise you can smother yourself in the darkness – some would call this depression, I call it laziness.

Time is the enemy when you get lost in a tunnel because it tests your strength and endurance through hard times. It is hard to sit and wait to see the light but it helps to take action and find your own light. Sometimes it helps to take action in tasks that benefit you. For me, it is helping others with rare diseases learn how to communicate and get help as well as to believe in themselves when all else fails. I am a member of several support and advocacy groups and when my day looks dark I try to reach out and find someone to help. Although I have been so active many people find me and ask for help…it gives you a feeling of importance when you feel like there is nothing you can do to change life. I guess it goes with that old saying – “if you smile at the world it will smile back.”

There are a few who I allow to get close enough to me to see during the “breakdowns.” They may get frustrated when I decide I have had enough but they know it is only a momentary thing and I will eventually find the light at the end of the tunnel once again. Hey, I am allowed to be human and have bad days too right!? So I pass my time trying to help others.

See, I am not completely selfless, as it may seem in some of these passages, or self-confidant beyond most, but I have a vested interest in helping myself through others. I guess you could call it “using” people but what does it hurt if I help them too? One of my friends recently told me she thought I was very confidant and I replied by telling her I am really not and it is all an act so others feel better and find the light in their lives. Not that I lack confidence, but I am definitely not someone who finds myself to be flawless. I have a ton of flaws; I just choose to hide or ignore most of them.

Recently I had some blood tests come back looking like I may be experiencing a recurrence. I can tell you during that day and week I felt lost in the tunnel and wanted to stop trying to find my way out. And then this morning I went for additional tests to see if I really am “sick” again or just having problems. I saw the sun and felt it’s warmth on my skin…I decided today was the day I had found my light again. While I do not relish the thought of battling Cushing’s again then at least I will go down being a person looking for light in the tunnel instead of wandering lost. Hopefully I would inspire others with their own personal battles along the way. I may not always enjoy fighting this damn disease – darkness looms - I know deep within myself I have the ability to find the light. We can not rely on others to give us the light all the time and we often have to dig deep. We can get help finding the light in the tunnel; however, we need to believe in ourselves the most.

Now I have the knowledge I lacked before and a network of support unlike any I have experienced in my life. Most of this support is not from life-long friends or family but from new friends and virtual friends who don’t know the “Dulcie” before Cushing’s and still love me anyway. Some of these people I have never even spoken to on the phone or seen in person. By working with them and helping others I was able to pull myself out of the dark tunnel and see the hope of a bright future. It may not be one I chose for myself or one I dreamed of but it is mine and I plan on making the best of it. And, if I help a few of them along the way it is an even greater gift.

Basically I guess it comes down to this, are you a “light-finder” or someone who hides in darkness losing hope? Perhaps you need to take sometime to evaluate your life and yourself to find out who you are – and hopefully it will not take illness or tragedy to get you there. There are lights at the end of tunnels…even the Lincoln Tunnel in NYC during rush hour – it is just a matter of time!

Am I Cured?

It is a question I receive daily from potential employers, friends, fellow Cushies, family and everyone in between. And not everyone wants to hear the answer - please don't ask if you don't want to know. I am no longer sorry for my answers and can not be held responsible for my disease or the toll it takes on my body, emotional status or if I feel like doing something. I have decided no matter what happens in my future, I will be "me" and not fake my life to make others feel better.

What I do know is this disease can come back at any moment. It is recurrent just like cancer and many other powerful illnesses. I have more background on this disease than most doctors and understand the pituitary-adrenal axis better than most. So, I do know my odds of it returning are high and the fact they can not tell a tumor in my head from surgical damage just tells me my odds.

Are there days I think it is back? Yes. Are there days where I feel like a million dollars and I can take on the world? Yes. Am I capable of being human and working and having a normal life - I think that is still up for debate, for the long-term. But, I do know that my brain works and I am able to sit here and write sentences that make sense and make phone calls and cook dinner (although sometimes it is not as good as it used to be). I can work now do things around my house.

Are there days when I feel very symptomatic? Yes. But I choose to believe that any strange occurrences that seem Cushie are my body readjusting to normal - or so I hope. I truly hope it is not the real thing. And yes, I have had recent blood tests come back high cortisol with abnormal hormone levels. However, no one can seem to answer the question as to whether this is my body adjusting back to normal or a recurrence.

It is a game where I wake up every day of my life and look in the mirror and ask the questions: Is this the day I recur? Will I have symptoms that don't allow me function today? Is this the day I could die from some leftover effects from surgery (as I do have problems because of surgery)? Or is this the day I could die because it is my time? I can't tell you which one of those is the scariest.

Everyone is scared this disease is going to render me useless, including me! Will I have surgery again and radiation (likely since this would be a recurrence) and suffer even more complications? I am not sure exactly. Part of me has found more help in alternative healing and applications than what Americans like to call traditional medicine. Do I think this is the cure? I do not know that either. What I do know is that some of the "alternatives" have allowed me to become more "Dulcie" than I was a couple of years ago. Do I believe I have the power to help myself? Yes, but the question remains about curing myself. The power a person has over their body and mind is amazing but learning how to use it is another story. It is something I am going to focus on though...you are now asking why...

Well if I do have a recurrence I do not know that I will go through the surgery and drama again. I want to be able to control my fate and if it ends up that eventually this disease takes my life than so be it. I feel my calling is to give it a voice regardless of what happens in my future - recurrence or a "Cushing's-free" life. I do have the power to choose and I have the knowledge to make a decision as well as accept the consequences. And will I have my days where I still cry and scream and kick about what this disease has done to my life? Yes. And, I expect you all to respect them as I do your little temper-tantrums.

We all have our issues and I will not be held responsible for this disease and what it has done and may do to me in the future. I will no longer hide my feelings and anger so I do not hurt your feelings - not that I have done a ton of that but I am told I am a "good pretender" and you would never know I had this disease. Well silence is what is killing others with Cushing's so my silence will not be their death sentence.

Recently I found out I will be on a new TLC show because of my illness and battle? They said I showed strength and am full of powerful emotion as well as the ability to communicate. While I dread going in front of the cameras there is a purpose - to give others like me a voice. People with rare diseases a voice so we can no longer be so misunderstood - I hope. After emailing my list of friends, I got a ton of support at a time when I thought I was about to quit being a voice (I was wondering if I had any effect on the world around me). I promise to do all of my Cushies and rare disease friends’ justice by telling how it really is and baring a body which is not mine for the world to see. My purpose - to yell, kick and scream to the world that people are not always what they seem and to help if you can!

NOTE: I will be posting the air date and everything at a later time but so far I shoot on July 27th and 27th. Millions of people will be seeing a body which is not mine but they will see my mind. This, I believe, is the biggest accomplishment of my career - and if you look at my background I have worked on many successful healthcare initiatives. But this is my biggest because of self-sacrifice (I hate photos and have very few of myself and it is even harder when you do not look like yourself – not a vanity issues as I have said before but an identity one) and the lengths I have had to go to get people to understand and "get it." To understand the Cushie story - one of millions.

I digress…

So the question remains...am I cured? Depends on of what you are asking? Am I cured of some of the barriers I put up so people would think I was ok so I would not hurt them? Yes. Am I cured of false realities? Yes. Do I believe that I will have my "bad days/Cushie episodes?" Yes. Am I sorry for getting sick? Yes because it changed my life both for the good and the bad but I would not be who I am. I am a voice for people with rare disease and I am proud of it. Does it hurt? Yes, but someone needs to help those who can not help themselves. I am fortunate enough to have enough background in healthcare to understand and a knack for communicating. Perhaps that is what makes me stand out from the others who have gone before - so my friends tell me. They tell me I no longer need to search for my calling that it has found me through this disease. I just hope it leads me to the path I want - to help others like me and to get others to care. I just want to help others. This is not a statement to get you to think I am some sort of "martyr!" I am just being me - a "Dulcie" changed by life and the question that remains - am I cured?

PS - Sorry for the long post but I had a lot to say...it's been far to long and I have been hiding from reality for a while.

Am I Doing Any Good?

Everyday I email people just like me promising them I will be there to see them through this horrible disease and all the in-between phases of recurrence. But, am I really doing anything? I encourage them to continue their fight but what's left after the fight when their bodies and minds may or may not be what and who they were before.

I know I am not the same and like cancer patient who has had chemo and now has curly hair vs. their previously straight hair. I am not the same and once again I have a chance of recurrence like any cancer patients or one who has experienced serious illness. For the rest of my life this disease can come back...look it did once and can again. The only difference is cancer is understood and the other "c" word is not. It makes it harder for me to try to gain awareness and talk to people telling them that if they fight hard enough they too can make it. What if we want to fight another way; through homeopathic medicine so that we can enjoy our lives to a certain point and prepare for an end. It either this or plan for what we all know will come healthy or with Cushing's DEATH!!!

So my question is, does this blog make you understand my plight and those of others like me? Does it make you feel better to read it and know there is someone out there like me? Does it help you get results, help your friends and family understand? Your job? Do they care that your brilliant one minute and dumb as a box of rocks the next? Do you volunteer that you are having moments? Kind of like do you tell them you are pregnant when you interview?

I believed in a time of honesty; but others do not understand this in the working world and choose to believe we are all healthy all the time. They do not think you are allowed to get cancer and Cushing's and other long-term illness. What do we do? Be honest? How honest and honest about what?

I feel now more than ever we need a foundation that helps people who have been out of "work" for long periods of time acclimate to the "real world." You know the ones where people talk about shopping, movies, gossip, etc. What do we have to add to the conversation that is not a total downer. Do we bring an understanding so they look at us with respect or disgust?

So I ask myself? Do I do any good chatting with millions of Cushing's patients trying to get on national television? Does anybody care about something other than the bottom-line and the "c" word? My goal was to get people to understand the last two years of my life and those of others.

Am I doing any good? Sometimes I wonder. Sometimes I cry myself to sleep wondering if I have helped one person to either get through the disease or to understand it? That is my purpose in life...but who would fund such a foundation...employers already have workers and people really don't care if it is now possible for you to shop or walk and talk without pausing at awkward moments to think or remember. Most employers don't care and just want healthy employees - ones that won't relapse. We wear MedicAlert bracelets so people know - because we could get very ill without them. Any thoughts on who would care to help out a program together with job training provide updates on social skills and knowledge so people can jump right back in or change careers? These are just parts of getting one's life back, part of what a foundation could do for families and members. It's just food for thought and something I have been asking myself lately...am I doing any good?

So as you read this or lay down think about the pages you have read and ask yourself if the next time you see someone with Cushing's "how will you feel?" Will you react in disgust, indifference, or compassion? Will you help? And will that help do any good? Am I doing anything to help any of you?