Skip to main content

Is This Real Life?

Have you ever seen that YouTube video where the kid just had dental work, and is asking, "is this real life?"  That's what I'm asking myself right now.  I am considering getting a second opinion on all of this new stuff.  New tumors usually mean surgery, but I'm having to jump through hoops with specialists to get everyones opinion before we can do anything.  I also feel like I'm doing all the work here.  I am gathering all the information that I need to go into appointments educated, so I don't have to rely on someone to remember to explain what is happening, I'm scheduling appointments and calling back 10 times to make sure they are on top of a referral or letter.  I also keep track of which parent can come to which appointments, based on work schedules and general availability.  (That part is OK, the rest is not.)

I've gotten to a point where I don't fully trust anyone with my care.  So I put myself into the position of educator, patient advocate, secretary, and researcher. You would think after doing this routine for each new tumor, after 3 surgeries and a plethora of other issues, these doctors would be on top of it.  I get the feeling that I am no longer an "interesting" patient, and just a pain in the ass.

I was looking at a doctor's profile at Mayo Clinic, and found out that he diagnosed himself with MEN-1 while finishing his medical training.  Maybe someone with experience of self diagnosing would understand my need for control. Maybe I would be able to trust someone like that who knows that he saved his life through self diagnosis as I saved my own.

I know I've gone on and on about this, but I just can't believe this is my life right now.  Who knew that instead of graduating college and going on to medical or PA school, I'm still fighting for my life, and a correct diagnosis.

Comments

Popular posts from this blog

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 29