Hello all. I'm on Day 2 of the Cushing's Awareness Challenge for Bloggers. As you can see, it is now April 11th. I believe I stated before that I will make 30 posts in April, not that they would be done daily. :) I hope you will forgive me.
If you are a Cushing's patient or "Cushie," you will not be surprised that my blogging is off scheduled from ... well, multiple causes:
- high cortisol
- low cortisol
- brain fog
- performance pressure
- the words "deadline"
- "done today"
- "everyone is waiting on me"
- "but I made a promise"
- "I will disappoint everyone"
- "I have so much to do"
- + any other symptom(s) that decide(s) to STAND UP and BE HEARD that day.
and other delays from being a patient with chronic illness:
- calling the insurance for preauthorization on procedures, surgeries, imaging, growth hormone injections
- calling the insurance for review of benefits
- calling the insurance for error in claim(s)
- calling the insurance for prescription pricing and coverage
- calling the insurance for specialty injection for adult growth hormone deficiency
- MyCharting/calling the doctor(s) for appointments, questions, requests, refills
- checking MyChart for appointments, lab results, and imaging reports
- studying every word in the lab results and imaging reports
So, it is this last one that I decided to focus on today.
Regular readers (some o' y'all tell me it's true!) know that I advocate for patients to self-advocate as well as to promote cortisol imbalance awareness (Cushing's, Addison's, Adrenal Insufficiency).
This is happening to me today, and I had to stop and share it.
I am reading the report from x-rays I had of my hips from mid March, just about a month ago. These images were taken 20 minutes before my appointment with a orthopedic specialist/ surgeon. I met the doctor, and he said he sees some inflammation in my pelvis but the medicine I take for rheumatoid arthritis will also help the inflammation in the hips and low back. WHOA! That's good news. I don't often get good news. I mean, actual "that pain will go away," "that tumor is history," or "these lab results explain your complete symptomology!" Uh uh.
I hear more of "I'll write a referral/ send your case to the ...
- sleep medicine for sleep apnea due to weight
- physical therapy
- mineral endocrinology (I know, right?! that's another post)
- allergy and asthma
- ophthalmology for cornea (contacts for keratoconus) and retina annual exams for RA med (more later)
- sleep apnea
- advanced ob/gyn ("for female hormone stuff)
- nutritionist (August 2017)
- orthopedic hip speciality
- pain specialist
- pain clinic with TWO doctors (physical therapist, psychiatrist = summer 2017)
That's 12 doctors I've seen since I started as a patient as UTSW in Dallas and three I'll add by the end of summer. 15 doctors!
Did you notice anyone missing?!
I also rely on my PCP and endocrinologist as a team for my medical health.
I see a chiropractor regularly to work out back pain.
I cling to my psychiatrist and psychologist for my mental and "behavioral" health. All are wonderful and *actually remember* what I told them last time. Novel concept for a doc these days and a total plus, right?!
So add 4 more doctors. That's 16 doctors now plus 3 by the end of summer. That's 19 doctors! I CAN'T WRAP MY HEAD AROUND THAT. Yet, this is the reality that many Cushies find themselves in.
Let's remember, folks. I am in remission.
My first pituitary surgery was June 18, 2009.
My second pituitary surgery was April 20, 2011.
My BLA was December 31, 2013.
I am more than three years post op BLA, and I still need all those doctors to find treatment and comfort for all that lingers after cortisol excess damaged my body.
Cushing's is not joke. It doesn't mess around.
Will this all happen to you? Will you need this much help this long after treatment? I don't know. No one knows, not even the doctors who tell you that "you are cured, stop worrying." Cushies know better than to use the word "cure." We say remission, and still fear the day that high cortisol symptoms decide to say "Hello. I'm back."