It could have been so much worse...

I see stories like this, and I feel grateful to have been diagnosed as "early" as I was (although it felt like a very long time to me).  Many people live with Cushing's for years, and receive much more damage to their bodies.

http://www.today.com/health/after-massive-weight-gain-cushings-disease-diagnosis-saves-mans-life-2D80527683

ACTH Stimulation Test

This morning I had an ACTH Stimulation test conducted at an infusion center.  I am trying to focus on feeling grateful these days for the things that are going well and improving.  So today was an opportunity for that.  I am trying to feel grateful that I was simply at the infusion center to have a test conducted.  It was a room with two nurses and probably 12-15 lounge-type chairs for patients.  People were there getting infusions for all sorts of things, many of them seemed very familiar with the nurses and so were probably there a lot.  I think one of the women had cancer, as she had on a hat.  Another woman was incredibly thin.

It was depressing to be there, to feel like a "patient" - a feeling I am trying so hard to fight - I am trying to just feel normal.  It's a hard emotional balance between giving myself a break and allowing myself to be sick, and trying to be optimistic and celebrate the successes and the indications that I am geting better.

So today, instead of being depressed, I need to focus on feeling grateful that my experience in an infusion center was only for a test, that my disease is curable, and I just need to be patient and give it time.

Learnings

First, thank you friends for your kind and encouraging comments.  They mean a lot to me - more than you can imagine.  I'm physically and emotionally different than I was a few months ago, so it means a lot to feel the love coming in.  Thank you.

My last post was the first page of my powerpoint presentation as I shared my story about my journey through cushings.  The following is the traditional advice or "what I learned" that makes it a valid health moment to share with my colleagues.  Of course these are just the main points, the details are in the talking points.

Managing Your Health
Tips for navigating difficult to diagnose medical conditions

•Find a good internist…now

–Internist vs. family practitioner

–Referrals to specialists will be like-minded

•Trust yourself / knowledge of your body

–Get second / third opinions

•Research doctors

–Google

–Rate MDs*

–Health Grades

–Vitals.com

•Schedule new patient appointments with 2-3 doctors/specialists simultaneously

–Ask to be placed on cancellation lists

–Follow-up with appointment schedulers regarding cancellations

•Get copies of your medical records, particularly labs

–Follow-up regarding lab results

–Recognize that labs can be conducted in various levels of detail

•As your condition progresses, repeat labs

–Look for trends

•Don’t give up!

The Changes

At my work, we regularly have to present "safety" moments - each meeting is supposed to start with a moment to share a safety, health or security learning.  I was assigned a safety moment to kick off a team meeting in December, and decided it would be a good opportunity to share my learning from "navigating a hard to diagnose medical condition" - and to tell the team about my disease, and the fact that I would soon be out of the office for several weeks for surgery.

It is therapeutic for me to share my story, as it helps me unravel my misplaced guilt and mistaken assumption that I am a hypochondriac and I am hopeful it will help others who also get written off as "anxious" by their doctors.  As I share my story, this happens all too often - particularly for women.  So I offered to share my story and learning as the topic for the Working Mother's Group, which holds a brown bag lunch every month to discuss different topics.  I put together a two-page PowerPoint presentation, which I'll try to cut and paste below.

 My Story: Diagnosing Cushing's Disease

"Normal", June 2010

I put this picture up to show what I used to look like.  I chose this one as it's when I'm fairly newly postpartum.  I think Katie is about 2 months old here.  I attributed a lot of my difficulty with weight to just being older and not being able to lose the babyfat from my pregnancy with Katie - but when I look back at pictures after she was born, I can see that's not true.  I gained weight and started getting the "moonface" months AFTER she was born.

October 2011

Weight gain, first anxiety symptoms
Consult with psychologist

January 2014

First physical symptoms (cardiac)
Consult with family doctor

August 2014

First onset of continuous physical symptoms
Consult with family doctor, cardiologist, psychiatrist

October 2014

Begin seeking specialists on my own

Diagnosed mid-November

January 2015
One day prior to surgery

January 2016

Average 12-18 months
for full recovery

Hormonal Gal

Wow, it's hard to believe that it's been over a year since we've posted on this blog.  Life has sure thrown us through the fire medically (and thus emotionally) over the last couple of years.  But,finally, I have hope that things will get better - partially because they are all.  With a lot of help from a lot of people.
I had the title of "Hormonal Gal" or "Adrenaline Rush" (although the latter would have been medically false) for an entire blog in my head for a while now.  But realistically, where is a mother of three who still has 2-3 medical appointments per week going to find the time to start a new blog?  I wanted to start at the beginning of my Cushings journey - which I realize now would have been several years ago.  I wanted to document my physical changes, the psychological impact, what I've learned, how I think I have changed, and how I still want to change.  But it's been too overwhelming on where to start.  So instead, this is going to be a hodge podge of what I feel like sharing, when I have the time to share it.

I am almost 12 weeks post-op - the time which I am announced "medically clear" to resume all normal activities - ie. I don't have to worry about breaking the patch in the membrane that separates my brain from my sinuses.  Which is really encouraging for me, as I really need to begin exercising again to feel good.  I still feel weak and out of shape and a bit depressed that my body is not changing back as quickly as I would like for it to.  But over the past week or so, I have begun to feel physically better, and more importantly, I feel like I am coming out of a rather dark place (aka depression) that seemed to overtake me a few weeks after the operation.

I had on-and-off insomnia for a few years prior to my surgery (yes, another side affect of Cushings), and last night and again tonight I find myself wide awake at 3 AM.  Mark says this is encouraging, as hopefully it means my steroid dose is becoming too high, which would mean my pituitary and/or adrenal glands are beginning to function again, so I have a total sum of too much cortisol.  That would be nice.  I have a test on Wednesday to test their function, and I am hoping, hoping, hoping that we get good results so that we can begin tapering or even eliminating the hydrocortisone.  But my negative self worries that the Cushings is just returning.  Unlikely at this stage, but still something that is a possibility, which would require another surgery...

My story with Cushing's involved a lot of people (myself included) believing that I had cumulative stress from managing Adam's heart condition, Mark's detached retina, and just living the day-to-day life of a working mother of three.  But when my symptoms continued to get worse, I fortunately had two advocates who encouraged me to continue to seek a cause for my symptoms (thank you Christina and Dad!), when my family practitioner rather coldly told me over the phone that my diagnosis was complete: hypertension & anxiety.  Our conversation took place in mid-October, and I had not spoken with him since.  I felt the need to provide him with some feedback, partially for self-vindication (I wanted him to know that I was NOT a crazy hypertensive lady that he believed me to be), but also partially so that maybe he will pause just a little before he writes another patient off who experiences a hard-to-diagnose condition.  So yesterday I wrote him the following letter, which I delivered to him through the patient portal.  My mom thinks that he will not respond due to legal concerns.  But at least he'll know:

Dr. Giglio,

It has been several months since I last spoke with you, and perhaps you already know about my condition from Dr. Berman, since I had to receive cardiac clearance from him prior to surgery in January.

I believe that you have the best of intentions as a doctor and want to treat your patients successfully, and so for that reason I am writing you this note.

I began seeing you regularly last August (2014) after experiencing episodes of orthostatic hypotension.  These symptoms quickly escalated into an overall feeling of being unbalanced and “foggy,” and soon I was also experience very intense anxiety.  I had seen you in January after experiencing episodes of chest tightening, which we both thought were potentially panic attacks. So, reasonably, we thought I might just be suffering from anxiety.  I began seeing a psychiatrist, but other symptoms continued to progress.  I began also experiencing periods of heart palpitations, even when I was relaxed.  You agreed to a 24-hour holter monitor test, and when it presented some unusual results, you referred me to Dr. Berman.  At my appointment with Dr. Berman, he observed that my blood pressure was high, so we agreed to monitor it for a month.  During the course of that month, my blood pressure rose to dangerously high levels, so I weaned the baby and began blood pressure medications.  At my prompting, you also agreed to run another round of labs to find out why my blood pressure was so high.  My potassium levels came back low, and so Dr. Berman ran a lab to test for Hyperaldosteronism.  When this test came back negative (around mid-October), you called me to inform me of the results and told me that my heart was fine, I no longer needed to see Dr. Berman and added a beta blocker to my medications to help address my shaky hands.  I told you that something was just not right --- it is not “normal” to go from a healthy 36 year old to someone with exceedingly high blood pressure over the course of a month, and that I would like to see an endocrinologist.  I asked for a recommendation, and you told me that I did not need to see an endocrinologist. You instructed me to take the blood pressure medication, continue to see my psychiatrist and check back with you in three months.

I knew something was just not right, though, so I researched doctor reviews online and had an appointment with an endocrinologist by late October.  He ran lab work which came back abnormal, had me do a 24-hour urine analysis test (also abnormal), dexamethasone suppression test, and finally ordered an MRI of my pituitary gland.  He diagnosed me with Cushing’s Disease by mid-November.  I had the tumor removed from my pituitary gland at the beginning of January.  I recovered well from surgery, and am now slowly recovering from the damage that Cushing’s has done to my body.  Full recovery is expected, but it can take many months.

After our last call in October, I felt that you gave up on helping me figure out the root cause of my symptoms and were satisfied with treating the symptoms themselves.  It was stressful and lonely needing to coordinate my care on my own without the guidance of a family practitioner, but I learned to be assertive and trust myself as the true expert of my own body.

I hope in the future you will listen more closely to your patients, and trust that they are the experts in knowing when something is “off” with their bodies.  After I was diagnosed with Cushings, I learned a lot more about the symptoms, many of which I clearly presented.

I wish you and your staff the best.

Sincerely, Katherine Griffith