Skip to main content

Overwhelmed, Big Time

Have you ever been so overwhelmed that the only thing you can do is cry? I am now 185lbs.  30 pounds up from my lowest weight post-BLA.  I know that I have Cushing's again, and I'm in a horrible cycle of losing and gaining weight.  I am overwhelmed by this possibility, and just don't know how to handle it.  Every time I have known something's off, I knew exactly what it was, and have been right each time.  I'm doubting myself, thinking maybe it's what I'm eating, but I know it's not.  Maybe it's because I'm not exercising enough, but I never have been very active, due to my weak muscles and bones.

I am also overwhelmed by my new diagnoses of Multiple Endocrine Neoplasia type 1.  It means countless surgeries - the pamphlet I got said that one particular patient that has a foundation has had 28 surgeries including a total pancreatectomy, giving her surgical diabetes.  I already have had a pituitary tumor and a parathyroid tumor, and I just want the parathyroid tumor OUT, now.  I don't think I can go through more kidney stones.

Someday, I will have pancreatic cancer.  Will they be able to catch it soon enough to operate?  Will that happen in the next few years or will I have a break from all of this before I have to climb that hill?

I am just so overwhelmed in this moment that I can't even begin to think about how to deal with all of this. On one hand, I can't believe I've gotten through all that I've already been through, so dealing with all of this is not a big deal, but on top of everything else it seems like such a big thing to deal with for the rest of my life.

On top of everything else, I'm trying to work as much as I can to somewhat support myself, complete my degree at UVM, and in some moments, trying to be a normal 20 something, having some sort of social life and maybe trying to date a little more.

Have you had a reoccurrence of Cushing's after BLA?  What about MEN-1?  How did you deal with these diseases and stay positive? Positive seems like it's very far away right now.

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