Skip to main content

Cushing's Awareness Challenge Day 5 - Being Prepared for Appointments

Being prepared for appointments is something anyone with a serious illness or chronic condition should do.  Through my experience with Cushing's, I have learned to look up my test results ahead of time and try to understand what they mean and what that means for treatment, medication adjustments, surgery plans, etc.  I also like to go to appointments with a list of questions I have for the doctor or things I want to discuss.  I sometimes just keep a running list on my phone so I won't have to sit down and think of all the issues or questions I've thought of since my last appointment.

 I sometimes write things down while I'm talking to the doctor so I can remember things I have to do before my next appointment or things to research more.  I can always request records of my visit incase I have unanswered questions.  Some hospitals have an online medical records system that you can log into and get certain instructions or test results, others you can call or email medical records and either pick them up or get them faxed or emailed. This is useful when you are seeing multiple specialists that aren't always at the same hospital.

One of the best things to do is join a support group, either online or through your hospital so you have people who are going through the same disease.  My Cushing's support group can help me decipher test results, and we all have questions about medication and many other issues.

I have created wonderful relationships with the doctors I see most because I don't just sit and listen to them, every appointment is a conversation, and I almost never leave the office with unanswered questions.  

Comments

Popular posts from this blog

Plastic Surgery

When I was 17, I thought about getting a breast reduction.  I was still pretty thin at this point and it bothered me to by bigger clothes just to fit my bust.  I had a hard time exercising and always had back pain and grooves in my shoulders where my bra straps sat. I had a few consults with different plastic surgeons and ended up scheduling surgery for the week before my high school graduation.  I ended up "chickening out" because I didn't want the surgery to have any impact on my graduation, and I hadn't had any major surgeries before.  I started gaining weight due to Cushing's shortly after, so it worked out for the best in the end.

Now, my breast size has gone way down since I've lost weight, and even though they are still bigger than average, they don't get in my way as much and are more proportional to my body. These days, my plastic surgery dream is to have a tummy tuck.  I have a lot of excess skin on my body, especially on my belly, and in a drea…

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

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…