NORD Approval

We got some amazing news this week!  NORD, the National Organization for Rare Disorders has approved my application for the Cushing's Syndrome Assistance Program that mainly helps pay for the testing leading to a diagnosis of Cushing's Syndrome.  This means that they will cover all "reasonable expenses" for testing, doctors appointments, and travel for testing and doctor appointments related to the diagnosis and treatment of Cushing's.  Of course it is for as long as they have funds to do so, and the approval is good through the end of the year at which point I would have to re-apply.  This is such AMAZING news!  Britt called to tell me the news and read me the letter as I stood there bawling in Wal-Mart.  So then I had to call my mother and tell her the news, and bawled some more!  I'm sure I scared some shoppers that day. 
I still haven't found out all the details about how it works, but I know that anything over $5K (for individual expenses) has to be pre-approved, so an IPSS is probably out but an MRI *could* be in depending on where I go (Prices for the 3T dynamic MRI ranged from $2K-$8K depending on the location).  It also means that I don't have to wait and do just one or two tests a month because that is all we could afford out-of-pocket.  It will GREATLY speed up the diagnosis process, so I hope I knock out some high results this month!  Things are looking up!  Dr. F also gave me the go-ahead to test as many times as I want, so depending on what NORD feels is reasonable, I might have my diagnosis in just another couple months!  (Some of the tests take a few weeks to get results, and I am not sure just how many I have to get back as high before he is confident enough to make it official.)

Grief and Diagnosis

I posted this in response (slightly edited) to someone on facebook, who felt strange that after years of fighting for a diagnosis, was upset and fearful about the tumor on her pituitary:

I'd imagine that diagnosis is a lot like grieving, in a way. Think of the way having a loved one die unexpectedly is so much the same and yet so different from knowing a loved one has a terminal illness. You know death is coming and you are living through it slowly. In the first, everything hits you all at once and is overwhelming to the extreme. The latter is still overwhelming but you tend to suffer through it slowly and in stages.  Still, everyone does it differently. When death finally comes in the latter, it can still hit you as hard as if you didn't know it was coming, it can be a relief (that their pain is over, for example), or it can be bitter sweet. Diagnosis for us is in essence a finalization of the "death" of the healthy person we once were. We may have known it was coming and expected, even wanted and fought for it, but it is still a big, messy, emotional life event.

Short term fixes cause long term problems

I've been asked twice in two days if I'm being given cortisol to balance out my low days, so I feel the need to explain in case anyone is interested in reading.  I've actually had one MD offer to do just that. In the short term I'd love it, honestly.  On the days when my pain and muscle weakness are at their worst I wish that was a reasonable option. When I'm physically and emotionally worn out and life feels so hopeless, when I see the long road of recovery ahead and haven't even hit the official diagnosis yet, I can feel desperate. 

Of course I wish I could function, wish I could be happier and do all the things I miss so much. But it is like my little secret "back up plan" that I haven't dared to tell anyone about till today, because I know how stupid it is.   

 My high cortisol days do allow me to function better, but they are by no means normal or healthy and have their own uncomfortable symptoms. It is the high cortisol days that are destroying my body's organs and systems, and left untreated, will ultimately kill me. Taking steroids when my body is producing too much would speed up the decline and increase my odds of permanent organ damage. It is because of the high days that I get the low days, as it is suppressing my pituitary function. To take cortisol would further suppress my pituitary, making a long-term cure nearly impossible to achieve.

If there were no chance for a cure, then maybe trading years of slowly dying for a few good months followed by a speedy decline would be a worthwhile option.  I cannot trade my entire future for a few months of mediocre improvement, because that is exactly what I would be doing...and because I hope for so much more.

I am glad that this woman is still fighting, and that she has her mother there helping her do just that.  I am amazed to hear that her doctors suggested she quit school because of the drain on her physical and mental abilities from the disease.  Very true (about the effects), but it is the first time I've heard of doctors suggesting that to someone struggling with the disease.  Interesting indeed.  It may just be that people don't share that part.  I've been told no strenuous exercise and eat more salt. LOL  But we usually hear most about the doctors that don't get it telling patients they aren't sick (despite tests proving it, even) and should just diet and exercise.  Kudos to this girls' doctors, regardless of whether I agree with telling her to quit school, they seem to "get it" and are invested in her health.  http://www.blueridgenow.com/article/20130503/ARTICLES/130509945  I hope her last treatment sends her into remission for good...a CURE for her.

Aint that the truth!

Found on the website above, hopefully she doesn't mind me posting it giving her credit. 

Second Opinion

Someone posted this to a Cushing's site the other day.  It explains a little the difficulty and length of time getting a diagnosis, some of the effects of Cushing's, and a little about surgery and recovery.  I LOVE that this Endocrinologist is wise enough to use the term "Remission" for Cushing's patients.  I've often wondered if the statistics give for "cure" rates were similar to that of Cancer --meaning 5 years post-op, and it they are actually accurate.  Regardless, 40-60% aren't fabulous statistics.  No wonder many are turning to a bilateral adrenalectomy after a recurrence of Cushing's.  I would certainly rather replace adrenal hormones for life than to be one that has to replace all the pituitary hormones for life due to too much pituitary damage from surgery (or repeat surgeries, or even pituitary removal).  Still, I wonder what the incidence of adrenal rest tissue is...  May have to look into that one at some point, not that it applies to my situation yet.

Testing resumes

Well, I've come up with a bit of a game plan.  Hopefully all will work out as planned, but I'm aware that it rarely does and trying to keep an open mind.  ;)  I contacted Dr. F's office (my endocrinologist) asking whether I had to have another appointment to resume my testing for Cushing's Disease.  To my amazement, she forwarded it right on to Dr. F who then sent me lab requisitions to do just that. 

I haven't started the testing just yet.  I've been tracking my symptoms, trying to get a handle on what signals a "high" for me and what signals a "low."  I've started tracking my blood sugar (a sign) as well because some people have normal readings on low days and diabetic-like readings on "high" days.  It is also common, I'm reading, for people to confuse a high and a low and actually get them backwards.  I'm starting to think that is exactly what I have been doing!  I feel like I've been in a prolonged low since I've started watching, but only time and further data will tell.

Here are some of my endocrinologist's words on a page about how to do a specific test:

"If you have cyclical or periodic Cushing’s disease, it is often challenging to determine what days are good “test” days, especially when you, the patient, is us...ed to feeling pretty crummy most of the time. The salivary testing process, particularly in cyclical patients, can be time consuming and frustrating.

If you are feeling nauseous, tired, achy, or slightly depressed, you may not have a
positive testing outcome. Instead, pick an evening where you are feeling awake after
dark. If you are experiencing bloating, acne, anxiety, irritability, weight gain, are unable to sleep and feeling manic you will probably have a more favorable outcome. Some people find that testing when they feel highly alert works, while others find it best to test when they are feeling normal. It may take a while to learn your cycles, so do not be discouraged if you do not produce positive results right away. It often takes people weeks or months to accurately diagnose their cycles. For this reason, we suggest keeping a diary of how you feel when you do each test. In this way, if we get an abnormal result, we can ask you to do further testing at times when you feel the same and perhaps expedite getting more abnormal results to back up your diagnosis." 

 

Here is a world-renowned specialist validating my experience and encouraging me to have patience and continue pushing onward.  So that is what I will do!  Push onward to a diagnosis, then on to finding the specific cause, then surgery, then recovery and hopefully remission!