Waiting to see if I have Cushing's or not...

[honugirl]

I'm just wondering if there are any other "Cushie's" out in Disland that I might be able to talk to. Currently I'm awaiting results on my first 24 hour free cortisol urine test. I'm scared. I've got quite a few symptoms pointing to Cushing's (for those who don't know what it is, it's where your adrenal glands go into over drive and mass produce some hormones, that's kind of a basic gist of it. Because of it your whole body gets screwed up). My life has been shattered in recent months by trying to find out what's wrong. I've been plagued by depression and rages because I'm so off. Kind of sad when you wish for a diagnosis of something horrible just so that you know what's wrong with you. But right now, I have no life. My energy level is non-existent. What energy I do have has to be devoted to hockey, but I feel that passion slipping away as well. I'm trying to go to school, but it's really hard.

To top it all off on my last MRI scan of my brain they found something on my brain stem (waiting to get into neuro for more info, may be nothing at all, may be something).

I'm hoping my test results will be in on Monday, but I'm not holding my breath.

If I could get some good thoughts that they find some answers as to what's going on, it would be appreciated. All I need is some answers and I can move forward towards a treatment plan. After all, I'm going to WDW in 11 months, I want to be healthy for that. At the rate I'm going, I'm scared that I may not know in time to fix the problem before then. Thanks!

 

[solferino]

I don't have Cushings, but understand the feelings associated with waiting for answers.

 

[honugirl]

Thanks for the hug and the support. I think waiting is the hardest thing to do...

 

[KPeveler]

the waiting is the hardest part - at least with cushings there may be something you can do (not always, but sometimes)... it took me 7 years to get a diagnosis, so i know how hard it can be. i may have the beginnings of addison's (opposite of cushings), so i know how much adrenal problems can crush your life. hopefully the tests come back with a definitive answer (one way or the other) soon!

 

[honugirl]

Wow. That's amazing! 7 years. I've studied Addison's a bit in my research, it's a scary diagnosis. I hope you are doing ok?

Thanks for the support! I've got all my fingers and toes crossed right now. I'm counting down the hours until the lab opens so that I can call...

 

[Mackey Mouse]

First I did a bit of reading so I knew what Cushing's was and now I am here to say that I do hope you get your diagnosis so that you will know what are causing these symptoms. Do come back and let us know if it is and how they plan to treat it..

Hugs and take care of yourself!!!

 

[KPeveler]

my disorder is as rare as cushings, but there is no blood or any other type of test for it, so it was really just a process of elimination... hope that you get news today, either way!

 

[honugirl]

Thanks Mackey Mouse! I'll let you know what's going on either way for sure.

KPeveler, thanks! Yes, I've read about Addison's, at least you're in presidential company with your disorder. Kennedy had it.

The news is:

I need more testing. The first test came back a "High Normal". I never thought I'd be happy about an abnormal test, but I am. It means that maybe we're on the road to figuring out what's wrong.

 

[KPeveler]

sadly, my primary diagnosis doesnt have any cool people with it houdini may have had it, but thats it...

i dont have addison's yet, but we think that I have the "beginnings" of it - that means we diagnose it yet, so more waiting!

hopefully you will get something definite soon!

 

[honugirl]

Thanks! Hopefully many dys of testing will reveal the issues.

Houdini is cool. I like magicians.

Nobody wants Cushings because it makes you fat and moody.

 

[honugirl]

I've got a phone consult with the specialist next Thursday. From there he'll decide what tests I need. from there we'll decide on a treatment plan. Unfortunately I just found out that the only treatment plans for this disorder are 1.) Taking out pituitary tumor if that's what's causing it or 2.) Taking out an adrenal gland

It's just now really starting to hit me as to how big this is. This could affect me for the rest of my life.

 

[solferino]

sadly, my primary diagnosis doesnt have any cool people with it houdini may have had it, but thats it...

i dont have addison's yet, but we think that I have the "beginnings" of it - that means we diagnose it yet, so more waiting!

hopefully you will get something definite soon!

I'm the same way- I have idiopathic tracheal stenosis, but have been seeing a specialist for Wegener's as the stenosis can be an effect of the disease. Although tracheal stenosis doesn't have anyone cool attached to it, I have seen some of the same vocal chord specialists that treated Steven Tyler and Julie Andrews. I figure if these dr's are good enough for those two I can settle.

 

[honugirl]

I know how you feel! I went to an orthopaedist once that was the head of surgery for the Seattle Mariners. I figured if he was good enough for them, I could settle. Ha ha ha ha ha ha.

 

[KPeveler]

I've got a phone consult with the specialist next Thursday. From there he'll decide what tests I need. from there we'll decide on a treatment plan. Unfortunately I just found out that the only treatment plans for this disorder are 1.) Taking out pituitary tumor if that's what's causing it or 2.) Taking out an adrenal gland

It's just now really starting to hit me as to how big this is. This could affect me for the rest of my life.

why dont you check out www.butyoudontlooksick.com and their message boards - we are a whole site of people who have chronic, invisible illnesses... you may find some people over there who were in the same position and have advice... just a thought!

the site welcomes everyone, so i suggest everyone go read the "spoon theory"

 

[honugirl]

Thanks! I'll look at it. I"ve read the spoon theory before.

 

[honugirl]

I hate being sick. I had to cancel the one thing I had been looking forward to all week because I feel so bad. For two weeks I've been waiting to play goalie in hockey and today was my day, I was wrong. It just makes me wonder why I should keep going. This is who I am, what I love and if I can't do it, why should I bother continuing to live this life? Doctors drag their feet on everything. They don't understand that for some of us, we just can't wait. My life is on hold. Other people are depending on us to shoulder our share of the load. I've had to explain why I can't shoulder more of the refereeing load this season and that was hard for me. I'm one of the most senior officials, I should be mentoring and doing the higher level games and I can't.

I'm going to go back to bed. If I stay up, I'll eat and if I eat I'll gain even more weight. It never ends.

 

[KPeveler]

its so hard to come to terms with chronic illness. i still am not there (mostly because we keep discovering new things), but i do my best everyday.

do you have a counselor (a therapist or a religious leader)? I know that you have probly heard that it was "all in your head" or that it was "psychosomatic" for a long time, but therapy/counselling really can help. if nothing else, it gives you a safe and constructive place to vent. there are counselors who specialize in dealing with chronic illness... it may be helpful (just an idea)...

modern medicine is really annoying - you will find with a lot of doctors that they drag their feet, as you said. i think most of it is for liability reasons. they are so afraid of getting sued that they don't do anything. just keep fighting for what you need, and you will get the help you need. i wouldnt let it drop for 7 years, and now i am on my way to my 3/4/5/6 (or something like that) diagnosis. just keep standing up for yourself, and you will make it.

letting go of things you used to do is hard. i used to be a runner (a good one too), but now i can barely walk, and need to use a cane or crutches. what i have started doing is looking for new things i love that i can do no matter how i am feeling...

 

[honugirl]

Hey there, back with a new update. My latest test results came back with an even higher cortisol level. So that sparked two more salivary tests and another round of testing to be scheduled in December. I'm getting really scared now. I just want the diagnosing to be over and that I can finally get back to "real life." My body is losing strength every day. My flank pain is getting worse and worse. I just don't know what to do any more.

I don't have a counselor or therapist and I don't go to church. I guess I should probably find someone. If only I had insurance to cover it... sigh. I'll find a way because it's important.

Time to keep fighting...

Thanks for the support so far! Especially you KPeveler, I think more than most you know where I'm coming from and where I might be headed.

 

[Mackey Mouse]

Hugs.. do know we are thinking of you. Please keep us updated, you can always post here and we will answer if you need a little uplifting.

 

[honugirl]

Thanks! This is really hard. It's like losing your body and your mind all at the same time. Some days you question everything, especially what you feel.