I've been avoiding my blog for the last few months since I have been sitting in limbo while trying to find a doctor that will take my case.
And so, just because I am so sick and tired of being sick and tired, I'm probably going to get a little politically incorrect here. Oh well, it's my blog ...
It seems that at least once a day, sometimes many times a day, I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live.
I have no doubt that is true. I have known several cancer patients and it is a real struggle and sometimes the outcome isn't good (understatement).
Now here is the *but* and my own little personal rant.
A Cushing's patient has many wishes:
1. Finding a doctor that believes they can actually be sick, not just fat and depressed (which happen to be symptoms).
2. Having friends and family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn't accomplish something that day.
4.Being able to find an understanding doctor.
5. Wanting their mind to be clear enough that they can keep up with their job and their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn't feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn't have so much muscle and bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.
This list could go on & on. The really sad part is that there are times I have wished that one of the many doctors I have seen over the last 5 years would tell me I did have cancer. Seems like obtaining that diagnosis would be so much easier. Cancer doesn't usually affect every system in the body. If you get a cure from cancer you aren't usually left with permanent damage to random body systems.
Statistics say that Cushing's is rare. I know it's not. As the "Cushie" community says - it's just rarely diagnosed. Most people think they don't know anyone with Cushing's. Most people would be wrong. They just don't know a diagnosed Cushing's patient.
That overweight woman in front of you in the checkout line? The one that has terrible mood swings ... she might have Cushing's. The co-worker that suddenly can barely do her job because she is so exhausted and has terrible brain fog ... she might also have Cushing's. You know that girl at school that now has arms so hairy it looks like fur ... you know, the one that also smells funky sometimes ... yeah, she probably has Cushing's. You laugh at her but you know what ... this disease doesn't discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day (of course that working out every day thing ended a long time ago - for me).
As a neurosurgeon has said "Cushing's kills." It just does it at a very slow, painful pace.
I was preliminarily diagnosed with Cushings Disease by my Internist (Dr. Elliott) on October 24, 2012. She told me I needed to get into an Endocrinologist as soon as possible. I have been trying (unsucessfully) since the beginning of November to get an appointment with an Endocrine at MD Anderson Cancer Center. Three months of repeated calling and trying to find out where my file was and I had gotten nowhere!! I went back in to see my Internist on January 15th and she was astonished that I had not been seen by an Endocrine yet. I sat and cried in her office -- I begged her to help me. Well she finally did and got me an appointment with Dr. Kelly Aguilar. Now, remember, this is not the Endocrine I have been trying to see at MD Anderson for the last three months (who I know has treated Cushings before) - - but Dr. Elliott wanted me to see someone and get the ball rolling, at least.
I have pretty much all the symptoms of Cushings ... and to be honest I’m terrified because if I really DO have it, its going to be caused by a benign tumour on my adrenal glands or pituitary gland which I’ll have to have surgery on. Then there’s the “extremely rare” chance that they’re not benign. I’m trying to not panic, but.. hmmmm. But, what if its not Cushings and I just get another -- "well we just don't know what is wrong with you" comment. That, to me, is worse than any diagnosis.
So here we are today, January 29, 2013 (five years after the first major symptoms started to appear). I went in to see Dr. Aguilar hoping beyond all hope that this would finally be the doctor who would help me.
And so we went through all of the symptoms I have gone over and over with 17 other doctors:
Reversed sleep pattern
GI problems
Weight gain
Tinitis / Electronic zaps / Motion problems
Fatigue / No energy
Migraine headaches
No appetite vs Extreme hunger
Heartburn
Vision problems
Irritability
Memory loss
Lack of concentration
Moon face
Back aches
Muscle aches
Lost strength
I know there are more, but that is all I can remember right now. So, Dr. Aguilar was polite, but did she really get it?!? Or, did she just think I am an overweight, stressed out 40 something woman who has lots of hot flashes. I think she was leaning to the "well I don't know what is wrong with you - you should just reduce your stress level" statement since the blood work done in October only showed a "little" cortisol concern. But when I almost passed out in her office she got a little more concerned. I looked at my hands and arms and they were white as a ghost - so I can imagine what my face looked like. So per Dr. Aguilar -- on to more lab tests: cortisol saliva tests and 24 hour UFCs (urinary free cortisol).
My fear now is that Dr. Aguilar is yet another doctor who is unfamiliar with Cushings because it is so rarely diagnosed. And from my studies most doctors don’t understand that many Cushies cycle and will have test results all over the board and that without correct testing, one would be very lucky to get a diagnosis. I will keep reminding her of that!!
A very long blog today on how my health issues never seem to "go by the book" ... hopefully next one will be a firm diagnosis and a plan on how to "fix" me!!
~annette
