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Showing posts from February, 2013

Rare Disease Day

Today is International Rare Disease Day, the goal is to provide widespread recognition of rare diseases as a global health challenge.  Even though each rare disease affects a small number of people, combined together, rare diseases affect 30 million Americans, almost 1 in 10.  The diseases and symptoms are different, but the suffering is the same.

I love an opportunity to share these awareness days, because the attention and understanding about rare and invisible diseases is lacking.

I am asking all of you, just for today, think about someone you may know who has one of these rare diseases, and send them an email.  Shoot them a hello on Facebook.  Something to let them know someone is thinking of them today.

If you want to learn or read more about Rare Disease Day, visit their website here





"The Lonely Patient" Book Review

I recently read "The Lonely Patient, How We Experience Illness" by Michael Stein, MD.  I kept a highlighter or pen with me the entire time I read it because after reading the first few pages, I knew this book was going to be one of my favorites, with many relatable stories and incredible insight into what people go through with disease.

The book is split up into 4 major parts, Betrayal, Terror, Loss, and Loneliness.  I have chosen a few selections to share how I identified with them.

"As soon as the patient crosses into the land of sickness, she realizes she has been abducted.  Many of her kidnappers are wearing masks and head coverings.  They do not tell her where she's going.  They carry unidentifiable instruments that could be weapons and move at a frantic pace in unrecognizable patterns...she is in 'No-land, Nowhere,' and has fallen off the map, the world of the knowable."

When I started gaining weight, getting sick, having kidney stones, and watchi…

Endocrine Update

I saw my endocrinologist yesterday.  I went in thinking I was going to have another surgery pretty soon, but I was wrong.  Apparently my parathyroid hormone is elevated (which I already knew), but my calcium is borderline and my Vitamin D is low.  She wants to see all these levels again once my Vitamin D is normal.  She also wants me to see a genetic counselor and have genetic testing because that would change the surgical approach.  I didn't understand this because she also said having these two tumors (2/3 sites for MEN 1) means I have to have yearly screenings anyway for more tumors.

I was a little disappointed, I do not want to have another kidney stone and was hoping to get this easy surgery (that I talked about needing 4 years ago) done with.

I have been upset about this new diagnosis of multiple endocrine neoplasia type 1 (otherwise known as MEN-1).  It means that this endocrine storm will NEVER end, and I will continue to have tumors and surgeries and hormone imbalances fo…

100th Post!!!

After a little over 3 years, one 30 day blog challenge, 2 brain surgeries, 1 adrenalectomy, countless hospitalizations, and 120 pounds lost, I have finally posted 100 blog entries.

When I started this blog, I kept it just for my record, as a way to vent.  I was horrible at keeping journals but wanted to keep some kind of record of events.  At first, it was so my family and friends would have some idea of how I was feeling if I died before I got help.  It turned into a way to keep my friends and family informed of the progress I was making, and finally, a way to help others going through health crises.

I love going back and reading about the day I was finally diagnosed, or after I first lost weight after a surgery, or the 30 posts I wrote for the Cushing's Awareness Challenge last year.

It has been a less than awesome journey, but I have learned more that I ever could have in a text book in medical school, and most importantly, this entire experience has made me a stronger person, …

Strep x3 or Mono?

As you may have read in this post, 1 month ago I was hospitalized at MGH for adrenal insufficiency as a result of 2 different strep infections.  2 weeks later, I was at my PCP's office after the sore throat returned.  I finished the 2nd course of antibiotics just a few days ago, and this afternoon, the sore throat came back.

I called my doctor's office and spoke to one of the nurses who suggested I come in for a mono test tomorrow.  The symptoms of mono and strep are similar, and as a result of having no adrenal glands, I am always more exhausted than the usual healthy 26 year old.  They tested me for mono at MGH in January, but it may have been too soon for a positive test, or this could be a new infection.

Getting sick all the time is frustrating and exhausting.  I have spent the month sleeping all day on my days off (today I only got out of bed at 2pm, I have to sneak that rest in whenever I can!) and in the rest of my free time, I go to doctors appointments.  The next few…