Help With A Puzzle?

Trying to put the puzzle pieces of your life together after a serious and rare illness is a hard task and one that takes courage and strength. Throughout the course of my battle with Cushing's disease many things changed for me both on a physical level as well as an emotional sense. As I tell many patients I work with; "You can either embrace the changes in your life for the better due to illness or let them destroy you."

Recently I began to put together my life's puzzle once again. This included designing a website for my profession as well as writing articles of the lessons learned from being a patient with a serious illness as well as about who I am as a person. After two-plus years of chaos you learn a lot and the puzzle turns into one of those thousand piece monstrosities where you do not know where to begin. I guess the only place I know where to begin is with the framework which included writing a website for my professional services of public relations, media relations and patient advocacy. Also, I have begun to write articles which I hope to have published in many health and women's magazines as an additional income. I have also started writing a website for my jewelry making hobby/business that began when I was ill in order to keep my mind busy and life focused on something other than a disease that was taking control of my life. Along those lines I started writing a book which is a complication of my life, not just about this disease but about some hard choices I needed to make during my illness. All of these are puzzle pieces of my life.

Luckily along the way I have had some support from friends and family. I only hope that those in my industry will embrace the strength it takes to put one's self back out there after you have altered your perspective in life. Some may know me from my prior exposure and may or may not have liked what they "saw" however I have to say that personally and professionally I have changed for the better. During my illness I was forced to mature and figure out who I am. Personally I think my experiences as a patient improved my skills as well as gave me new ideas and lessons I try to share everyday with the people in my life. Perhaps someone will give this "new and improved" Dulcie a a chance to prove she is better than before and can provide results but also be a great team player and leader because of the recent struggles in my life. Eventually I plan to start a foundation using my abilities to help others where there are gaps in the health care system and then help them get back on their feet. However, I have to finish getting back on my feet first. I continue to help my friends with Cushing's and will but I need to prioritize my professional life and paying the bills.

You have no idea how much there is to juggle in putting your life back together when people are afraid because you were ill. It only makes me stronger and I think they need to think recognize how hard it is to put your personal life on the line. There are days when I get angry with myself for not aving it all "together" yet but then one of my friends told me to replace the Cushing's with the word cancer and I would find myself being more compassionate toward myself. She was right, i would not feel bad about all of this if I had cancer because we have been trained to understand people with that particular disease. Because Cushing's is rare I understand people being afraid of a relapse or my abilities to produce the same quality of work as before; none of that has changed and if anything it has improved due to my experience. I ask them to replace Cushing's with cancer and see how they would respond to me. I may have had brain surgery but I promise it is all there and more with the lessons I learned during my illness.

Even my family doesn't totally understand and I ask them to replace the word Cushing’s with cancer to see if it changes their response. I will continue to place stories on Cushing's, like the TLC program I participated in to educate people about the struggles of a patient. The education needs to continue and hopefully my career will help me do just that as well as bring new experiences to the table for patients with other diseases. Our health system and companies that provide services can use new ideas and programs to help patients. I only hope people will help me put these puzzle pieces together and then we can build programs to better service our clients and our patients!

Care to help?

Another New Approach

So I am amazing if I do say so myself...apparently I can point to the exact vertabrae that are damaged as well as to the place on my femur where there is a cyst - mind you it is not able to be felt from the outside - yet my docs think I should have no pain and am crazy even though the MRIs support my complaints and show damage that requires surgery; if not this minute in the future only time can tell when. I must be a brilliant physician in disguise of a former pituitary surgery patient. I don't know about that but if these docs refuse to treat my condition appropriately I will be seeking that of a DO (Doctor of Osteopathic Medicine.)

Apparently these physicians are just that medical doctor that use a whole person approach to medical care. They look at lifestyle, diets, previous illnesses, and other possible contributors to illness including a poor home office setup, etc. They also look at you as an intelligent being and weigh factors of intelligence and emotional stability to help determine causes for high blood pressure etc. These doctors do not just hand you a pill and say swallow and you will feel better.

I firmly believe that there is a reason for everything which is why I can not let the fluctuation of my hormones or ability to point ot the exact areas of pain as nothing and just a figment of my imagination. In life I believe things happen for a reason and my getting Cushing's disease is no accident. I got it to help me find a purpose in life and to give myself direction I was lacking. Life gives us things for a reason and some are tools and some are lessons and what we do with them is our choice. Some people prefer to ignore this "sixth sense or gut-feeling" because it just happen. Nothing just happens and therefore there is a cause for my pain - my MRIs prove my thoughts and feelings now I just need the doctor to help heal it through lifestyle changes, medication, or whatever it takes. I just hope this is a good doctor as I have had my share that must have gotten their MDs through the mail accusing me of having brain surgery for no reason...huh? What brain surgeon would open a persons most important body part without reason or cause...you tell me.

Anyway, I hope to have an resolution to my problems, in he meantime I will be working on creating websites for my various endeavors and writing my book. I wish you all well and hope that you don't just walk through life ignoring lessons and not using the tools to make it better. The universe provides us these for a reason not just for the sake of doling out useless information...

A Chink in the Armor

Yesterday I found a new chink in the armor of new docs I put together to help me address my final symptoms. He was real brilliant and could not even begin to address any one my questions. Like is this a normal part of recovery, is it possible that my tumor has grown back, can I have an MRI to check, is it possible that scar tissue can causes symptoms or transient symptoms? He told me that pituitary Cushing’s does not really exist. Yeah right, since most people with Cushing’s I know have pituitary not adrenal…maybe he should speak to the support groups or actual patients since I would be his first. Great another virgin!

So, he was so incompetent that he forgot to adjust my diabetes medication because he was too busy trying to tell me pituitary tumors do not really cause problems and I had surgery for nothing in my brain. Hmm, really?

I proceeded to call my surgeon when I got home and told him my story and he laughed saying he can not believe the ignorance of doctors in New Jersey when it comes to Cushing’s. He was making some calls today and yesterday to get me to some experts in California and Oregon. Hoping to get some resolution to why I am still somewhat symptomatic. Meaning that some symptoms are here all the time and some come and go. This makes life complicated and my treatment and resolution even more fun to deal with, especially for those who are disbelievers.

But hey, that is where my fighting comes in handy right!?

A New Arsenal

This past week has been aligning a new medical team to determine the remaining pain I have that prohibits me from living my life to its fullest. I have changed some medications and gotten a new pain management specialist, new endocrinologist, and new neurologist to help put these puzzle pieces together. I will also be seeing more of my physical therapist to gain even more muscular strength back.

I have gone through a battery of tests including a pint and a half of blood, three days worth of urine – yes, those damn little cups have return to drive me insane and give me “cup phobia.” Most people are scared of peeing in public but hey I have a thing for those little cups.

So with my new docs and new regimen of medication, all 15 of them, I plan to finish my recovery and begin formally pursuing my career/business, the foundation to help others with Cushing’s and other pituitary diseases or maybe getting the existing ones to hire me and let me improve some things. I do need a paycheck and soon so I am attacking this with a vengeance.

My current daily activities include writing my business website, working on at least three support groups daily, and writing my first book – no it is not about my disease and recovery. Some people will probably will not approve of what I am writing about but since they walked out on me during my battle with Cushing’s I have nothing to lose; I have already lost them.

You can’t force people to accept you and to embrace your hopes and dreams. I guess that is the hard lesson learned but I also learned you shouldn’t keep those people around and change our life to make them happy after all you have to live you life in the end right? I enjoy helping other patients and spending time with a wonderful man in my life and reading a good book and a hundred other things so I am not done living and plan to use my arsenal to get it all put together…

…wanna help?