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

Chronic holidays

The holidays are a great time of year: gathering with family, eating good food, spending time with friends. Still, they can be rough on those of us with chronic illness. Gathering with family can be stressful, with fights, tension and potentially seeing people you wish you weren't related to. Too much eating can lead to weight gain. All of it can mean pushing yourself past your limits. It can be a disaster.

After 6 years of chronic illness, I am still trying to learn how to enjoy the holidays as I did in years past.  Here are some things I think might help.  Limit your stress as much as possible; I know that can be hard with traveling, seeing relatives with whom you may not get along and demands on your energy when you may not have all that much to give. It's also hard when you love to decorate the inside and outside of your house.  But keeping everything in perspective is essential. Maybe you don't get out ALL of the decorations or don't expect yourself to get all the decorating done in one day.  Maybe you don’t go to every holiday party to which you’re invited. Maybe you let other people cook the big show-stopper dishes. Maybe you plan in naps during all-day family affairs.

This year it took me 3 days to decorate my Christmas tree (instead of the couple of hours it use to take me).  And this year I asked for help!  My husband has been awesome!  Thank you honey!!

Now I know you are looking at these pictures saying, good grief, scale that thing back, Annette.  I really would, but I love it too much and it truly brings me joy! And somehow that joy makes me feel just a little bit better!

Eating as well as possible is so critical, too. I know it’s tempting to have two or three helpings of all that deliciousness, plus a few slices of pumpkin pie for dessert. Bad idea. A good way to prevent overeating is only allowing yourself one plate. Whatever I can fit on that plate, I can take. No seconds. But I’m sure there are lots of other ways to keep from eating too much.

But, really, all the holiday tips in the world boil down to one thing: Take care of yourself. It’s not worth working yourself into a frenzy and hit every holiday high note only to be flattened for days or weeks afterward. My advice? Do as much as you can. No more. The holidays are no less special if you spend a few evenings basking in the glow of a Christmas tree, listening to carols on iheartradio and sipping on hot apple cider or hot peppermint chocolate!!

My very best wishes to you all for a
Merry Christmas and Happy New Year ~ love Annette

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When your spirit feels like crying

Thanksgiving day - 2012:  Do you know how to be thankful? I think, typically, we compare ourselves to others. We count our blessings, because we know some people have much less. We tell people we love them, because we may not have them beside us someday. We may even do a random act of kindness, because we have needs that no one notices, so we try to notice another’s needs. And we think about how we could be worse off, how we need to stop complaining.  Is this how we should approach "being thankful?"  I don't think so.

Here's what I have realized ... when we compare ourselves to others. . . we always end up not really feeling thankful in the end.  I have found that the only way to realize how to be thankful is to understand the gifts that God has given us. That seems easy to say ... but it is not easy to do when your spirit feels like crying.  My spirit feels like crying a lot lately!  Can we overcome those feelings, especially on days like today - Thanksgiving?  I say yes!!  Here's one way:  focus on the people, places and things for which you're grateful. "Count your blessings and you will find them to be countless, even in the midst of adversity and tragic circumstances," say Robert A. Emmons and Joanna Hill in "Words of Gratitude for Mind, Body and Soul." 

In 1 Thessalonians 5:16-18 we read:

16 Rejoice evermore.

17 Pray without ceasing.

18 In every thing give thanks: for this is the will of God in Christ Jesus concerning you.  

As I look at the above scriptures in 1 Thessalonians, I find that our joy, prayers, and thankfulness should not fluctuate with our circumstances or how we feel. All too often these three commands – be joyful, keep praying, and be thankful – goes against our natural instinct to lash out and be the exact opposite.  The key point is to make a conscious decision to obey God’s Word – whether we “feel” like it or not, and in so doing we begin to see things in a new perspective. When we make a practice to obey God we will find it easier to be joyful, prayerful, and thankful.

             Few things in the world are more powerful than a positive push. A smile.
              A word of optimism and hope.  A "you can do it" when things are tough.
               ~Richard M. DeVos

Look to the practice of writing down what we are thankful for every day for the positive push Richard DeVos talks about above.  I believe if we (I) do this, we will begin to have a grateful heart and realize that there are more things in our lives to be thankful for than there are to complain about. In so doing we become a more joyful person to be around and we will find it much easier to pray for one another as well.

It may take baby steps at first to find something to be thankful for – but “you can do it!”

I am thankful for a loving husband, beautiful children, parents and family members who love me and support me through the midst of my trials.  Life is still beautiful!!

What are you thankful for today?

Abnormal Mammogram

Well fluff....dang if I haven't put off having a mammogram for years and I finally go and get another one and I got the call.  Today at 4:50 pm, my OBGYN's office called to say I had to come back for some abnormalities in both breasts and that they would need to do an ultrasound. The nurse reassured me they hadn't found actual lumps, but given my recent health issues, I have to admit that tears were rolling down my face as she gave me the phone number to call for scheduling. I was scared. How not to worry myself to death about this too!!  Good grief!!

I'm going to call tomorrow to schedule my second testing. Sure hope this one comes back negative, you know, I'd like to not have breast cancer on top of everything else!

Annette

Why I'm Writing (A Chronic Illness Blog)

I have found writing to be enjoyable in the last several months as our country went through the a presidential election process and as I have moved toward a diagnosis after years of illness. I feel that recording the journey from this point forward, will be beneficial to me and hopefully to someone else as well.  Any writing I have done prior to this was either just about myself privately or public Facebook posts.  I think it’s a big step to share your whole story publicly, regardless of the topic.

I didn't even know what blogging or a blog was before I got sick.

I have thought about sending out weekly e-mails to a list of family and friends but I think a blog would be much more user friendly.

I am hoping to have an “official” diagnosis soon.  I have been floundering for the past 8 months, or so, as my health has been rapidly declining.  Physically, I am in pain and feel like I have been hit by a truck.  Emotionally, I feel like I have been steamrolled.  Some would say I am not in a good place.  I have to be honest - my faith is challenged the longer my illness continues.

For years, I have been open and honest about my illness experience.  I have had a no-holds-barred approach, sharing details, maybe to a fault (mostly on Facebook).  In some ways that has had an impersonal feel to it when it comes to my family finding out how I am feeling or when I have gone to the doctor.

The thing I like about this "new" blogging ability is that, at least as far as I'm concerned, it is happening in real time (new to me anyway - I am getting old).  My thoughts and feelings will be documented, sometimes looking back, but mostly as they are occurring.

So I am going to start writing about my illnesses as a way to keep the people in my life abreast of what was happening to me, as phone conversations and in-person meet-ups aren't necessarily often enough to have people stay current and not be overwhelmed by information.

Recently, I have found that writing can be food for my soul.  When I have sat down and wrote the heck out of something, it has made me feel better.  Writing seems to have helped me to express my thoughts in a way that other types of self-expression haven't.

As I have begun reading different blogs of people dealing with illnesses similar to mine, I can see that blogging might help me remember that I am not the only one in the world that this is happening to.

So far I have met several wonderful and amazing chronically ill people.  I have seen that illnesses are not a result of inherent personal failings, but some happenstance flip of a switch or roll of the dice.

I am grateful to have found this medium because I believe it will help me document things.  I know that a few years down the road I will be glad to be reminded of the many experiences I have, even when I don't remember the particular instances by heart anymore.

I will be writing for you.  And I will be writing for me.