FINDING REAL BEAUTY WITHIN

A few days ago I watched a video that Dove put out entitled Real Beauty Sketches. I don't even have to watch it again to get that lump in my throat and for tears to start flowing. Since watching that video I have been looking through old and current pictures of myself trying to come to grips with what my undiagnosed health issues have done to body, my mind and my spirit. I have been searching for a medical answer for over 4 years now and 20+ doctors later there are still no answers. Just more time and money spent with tests that come up with no concrete findings. Often I find myself wanting to just give up. But just when those feeling come ... things like my sweet husband assuring me of my beauty, the recent video from Dove or another beautiful and inspiring post from Mitchell's Journey facebook page pops up that stops me from going down the "I want to give up" path.

While I agree with the sentiment "love the body you're in," I really struggle with body image. I feel like in many ways my body has betrayed me over the past years, and I just haven't been able to locate the Love I should feel for it. I look at pictures of myself when I was feeling better and I get sad...wondering why I didn't like my body then. I was cute, petite. I didn't have much abdominal fat, no arm fat, no hyper-pigmentation on my face, no double chin; you could see my collarbone. Although I haven't gained the enormous amount of weight that some poor souls do, I carry around way too much for my frame which causes a variety of aliments along with muscle and bone weakness and fatigue which prevents me from really being able to work hard enough to lose the weight and rebuild, even on the days when I am not constantly being attacked by the electric zaps to the nerves behind my eyes and to my brain. I have to admit that I find myself resenting what my health issues have robbed me of!

I guess the purpose of this post is to say that I am truly trying not to give up ... to find hope where there seems, right now, not to be any; to find the beauty that I know I possess within myself. I have been posting pictures of myself that make me uncomfortable but I am really looking at them and still seeing me in there - maybe not in the body I have always dreamed of - but I'm still here. Little Mitchell Jones fought hard to stay here with his family to the very last day he had here on this earth. I need to be more like him; I need to have more faith and love for myself!! I am blessed to have a wonderful husband Dean Davidson and beautiful childrenDanielle Soelberg Martin, Nick Martin, Brandon Soelberg, Jaxson Davidson, Austin Davidson, parents Shirley Johnson Lloyd and siblings Suzanne Lloyd Sherman who stick by me through it all and I love them all with all of my heart. I also want to say what a blessing it has been to get to know Christopher M. Jones through his son's page and through his amazing posts about the journey they have been on with Mitchell. I have been humbled by his faith and testimony and have learned more in the last three months about struggle and love and sacrifice than I have my whole life! I love my Heavenly Father. I know that He lives and that He loves me and will, if I let him, get me through whatever trials lay ahead for me!

Never by the book

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