Life with Chronic Illness

I posted in April 5 Challenges/5 Small Victories and thought it would be a good one to repeat today.

5 Challenges

1. Keeping up with appointments.  In the next month, I have 3 speech/respiratory therapy appointments, 1 endocrinology appointment, 1 neurology appointment, 1 ultrasound, and 1 dentist appointment.  All that while working 3 days a week and dealing with a chronic illness = more than a full time job.

2. Being Calm.  If I'm not at work or at an appointment, I'm worrying about what will happen at that appointment and what surgery is next and what that diagnosis means in terms of all of my other diseases.

3. Being on time for work.  I seriously have a hard time getting up in the morning.  I always forget about the 5-10 minutes I need to add to get from the parking lot to work via the shuttle.

4. Having a new diagnosis of hyperparathyroidism and dealing with what that means (more surgery, MEN-1?)

5. Taking medications every day.  I have a weird inability to swallow pills…

Dear 4 endocrinologists, 1 neuroendocrinologist, 1 reproductive endocrinologist, 1 cardiologist, 2 primary care physicians, and 2 psychiatrists,

I visited you between 2002 and 2009.  Sometimes, I saw you multiple times asking for help.

In 2002, I saw Dr. Cardiologist. I was 180lbs, which is just "overweight" for my 17 year old 5'8" self.  I had high blood pressure, and at one visit, you repeated it 8 times and it was still elevated.  I was not nervous to see you, I had Cushing's disease.  Less than 1 year after the visit where I was 180lbs and had elevated blood pressure, I saw you again, but was 200 lbs and 18 years old.   My blood pressure was even more elevated, and you repeated it, only once.  You suggested that I exercise and eat better to lower my cholesterol.  3 months later, I saw you for a 3rd time.  I was 230lbs.  Didn't you think something was wrong?  According to me AND my parents, I had no change to my eating habits.

For everyone else, your no…

As we were leaving from a NH getaway, I realized I started to feel worse and worse as time went on, to where I couldn't get out of bed or pack or help clean.  Every muscle in my body hurt.  We decided that I would continue resting while Andrew got my things together (thank you!) and we got the in car and prepared to meet a parent of mine in Melrose.  Turns out no one was there so more rest on the couch, then off to MGH after not being able to put a coherent sentence together.  I got a few too many throat cultures, too many pills, waited too long in the hall, and finally got admitted for real OVER 17 hours AFTeR we arrived at the ER.  I got to stop my IV steroids and am going back to a lower dose, I have two strains of strep which require two kinds of antibiotics.  I thought I was going home today but the plan was quickly changed to tomorrow or Monday based of my blood pressure and everything else.


So, instead of having a nice leisurely vacation I got to spend the tail end of mine …