It always amazes me how many details there are in life. I spoke earlier this week about how I feel like I play medical whack a mole. You fix one thing another thing pops up.
I am one of these strict dietary people. I have been gluten free for 7 years, dairy and sugar free for 2 years. I try very hard to watch everything that goes into my body. I am a food nazi.
Recently I posted about trying the new time release cortisol pills. Upon my trying them, I found that they did not work for me and I ended up very ill that day.
So I tried to figure out the difference between the time release pills and the brand name cortef pills.
GUESS WHAT I FOUND OUT?!
LACTOSE is an ingredient in cortef.
I have been avoiding dairy for years……really??
Here I am thinking I’m doing so good to try and keep my auto-immune processes and inflammation down….but I am literally taking lactose 5x a day.
So what did I do? Me, being me…calls my best friend and asks him to get me some ice cream and macaroni and cheese. To which he thought I had lost my mind because I am the food nazi…….
What did this teach me?
Perfection isn’t possible. I have put dairy back into my diet. 😀
This Friday I have an appointment with the endocrinologist in this town. I have typed up a fancy sounding letter in hopes that he will agree to manage me on the cortisol pump. We shall see……..
Lesson of the week guys- Do what makes you happy.
I had gluten free pizza for the first time in forever. 😀
Below is the letter I sent to the new endo……
Internal Medicine Associates
I am writing this letter in preparation for my appointment with you on June 9, 2017. I am a new patient to your practice and wanted to explain my history and objective beforehand in order to achieve the most beneficial results possible. I am very confident that with your experience and credentials you will be able to help me regain my quality of life once again. I have been diagnosed with two rare diseases, Medullary Sponge Kidney Disorder (diagnosed by the Cleveland Clinic via MRI) and Addison’s disease (also diagnosed by Cleveland Clinic by ACTH stim test, multiple 8am cortisol blood draws, CT and MRI scans.) MRI revealed no pituitary mass, so my Addison’s disease is believed to be caused an auto-immune process. I was not on steroids before my diagnosis so it is not secondary adrenal insuffiency. I am 25 years old. I am unable to work or drive due to becoming very ill last year. Ever since then, my quality of life has become non-existent. I was working two jobs in the medical field and was seeking a degree as a Physician’s Assistant. My life has come to a screeching halt. I have done much personal medical research and spoken to countless AI patients internationally. I have discovered the treatment of the cortisol pump and am seeking a physician willing to manage me on this treatment. I have found physicians in other states and one in Jacksonville that are familiar with this treatment. It is my hope that a local doctor will be willing to manage me with this treatment. I have enclosed a few studies and hope you will consider managing me on the cortisol pump.
I currently take oral hydrocortisone pills and struggle with malabsorption issues, ulcers, acid reflux, extreme fatigue and many other issues that would be resolved if I were placed on the cortisol pump. As a diabetic specialist, I know you are familiar with the concept of an insulin pump. The cortisol pump works the same way, but instead of insulin it delivers Solu-cortef through the cannula. I am determined to gain my life back. It is my true desire to help other people. I plan to go into endocrinology myself, as I believe adrenal issues are not rare they simply are not tested for. I look forward to meeting you. Thank you for your time.
Winslow E. Dixon