Confusion: The Conflict of Positive Attitudes and Reality

So this weekend I focused on doing things that I like to do with a positive attitude. And while there were moments that I didn't feel so well or got slightly upset it was fairly good overall. It's hard to sit there and try to be normal while wondering if your life will ever be that way again. Will you ever fit back in your normal clothes and will your skin and hair bounce back from the terror they have become? But at other times I blushed because the strange ticket man at the movies paid me a compliment on my smile. Not sure it should be a compliment coming from someone who checks you in with all sorts of unusual sounds like he swallowed a slot machine. But I'll take it. At this point I feel I've lost all parts of my sex appeal and even any sort of remote attractiveness that was once there.

I even made an attempt to attend a party this weekend. Which would have been a big step since I don’t let people see me now and people who know me don’t recognize me. How horrible is it that people whom you've known for years all of a sudden don't recognize you. It's a tad embarrassing and hurtful at the same time. But have no fear, none of my clothes fit over my bulging stomach. Yeah sure I could wear my jeans on my legs and low-rise are in fashion but I think leaving the zipper and button open is a little too low for me. So I nixed the party idea. Maybe someone should throw a pretend you're pregnant party or a sports party because then maybe I could fit in. So I stayed home secluded from the world and the humiliation of putting myself out there for more questions and comments behind the back.

I never knew what it was like to be fat. I always felt bad for people who were a little overweight as long as they didn't constantly bitch about it and do nothing. They would complain of stares and people not servicing them as well and now that has become my reality. It's amazing how superficial this world is. It was something I encountered even when sitting in a nearby café to have some lunch or when I stand in line to get a cup of coffee…I don’t usually talk about this since people think I’m imagining it but for those of you who have experienced it, you have my sympathy and my apologies for being so ignorant in the past.

So anyway, I continued my weekend and focused on movies so I could pretend to be living someone's life that isn't mine. That works fairly well except the moment I have to walk out of the theater and the stairs remind me of my current state as I huff and puff trying to get up them, and as 80 year old women pass me.

So I had high hopes that today would be better. I was so excited to go and get my hair done. I guess, hoping that the stylist would be able to breathe some life into a mess that I call my hair. No such luck. Even after cutting off six inches it still was lifeless and dry, something my hair has never been. My hairstylist even commented at how thin and dry it was becoming and so unlike my normal hair that he was a bit worried about my health - since your hair shows signs of poor health. His gentle comments weren't meant to hurt but for the first time ever I felt as though I might lose it and cry in the chair. As reality set in and the dreams of having glamorous hair once again were torn from my imagination. It should be noted that I am known for changing my hair and chopping it off and all sorts of other weird stuff. Anyway, he calmly stated that we would do our best until it returned to its usual state. And again I sat and wondered if I would ever be normal again as the reality was thrown back at me.

I guess if we look at the bright side the weekend offered me a compliment and the new hair cut helps to hide the growing lack of neck. I just wish it could hide me from reality for a day or two as I could use a much needed vacation.

Okay, back to try and save my positive attitude and hope that reality can stay away for the rest of the day...hopefully the snow will keep people and reality away all while coating us with a new canvas to start over on...

Money Sucks! Or I should say the lack of...

So I'm trying to be a financially responsible person by calling my creditors to work out some sort of lower payment plan during this whole fiasco. And I have to say it's a bit frustrating trying to do the right thing.

If only I could get a good copy of my W2 so that I can show them that eventually I'll be able to go back to paying them off properly...but now my job can't do that for me either. Not only is the W2 they gave me wrong but now it's more than a month overdue. And according to the state they don't seem to have proper disability insurance either so it looks like it will take a few more weeks to get any money! Try talking to people about payment programs when you can't claim any income and show any proof of it! Gotta love it.

So anyway, I'm calling these creditors to enroll in special programs for sick people and one basically told me you could be dying and we don't care you still have to pay us the full amount. Nice! She even was so kind to tell me that my account is in very good standing with them. Great - what does that get me?

So I decided I'd pay a couple small ones off to help preserve my credit rating and cancelled my accounts. Hopefully that will get me something but after today's calls I'm not so sure.

Perhaps one would just be better off trying to not do the right thing and just ignoring the companies and never make payments. Too bad my conscience is too good for my own benefit.

Okay, off to do some anger management walking or something. I'd hate to punch a wall or something. Besides I'm trying to stay positive...

Reclaiming the Fire

I don’t know when I started allowing my life to live me but Sagittarians are well known for the fire the hold within. A Sagittarian, a true fire sign, is someone who lives their life to the fullest over coming any obstacle life throws their way. They love the most and they live life with a passion. I guess that means we hurt the most too! Anyway, somewhere along the line I let this disease or fiasco start living me…well watch out because tonight as I lay here wondering what else can possibly happen to me in this terrible journey I realized that I have lost myself and it’s about time that that fiery Dulcie came back.

I once asked my Mother why she thought I was the kid who never needed help and she said that it was because I was the “kid who no matter how hard I fell would always pull myself up even higher than from where I started.” In every job I ever held I was the employee who was passionate. In every sport I played I was the “heart” player never quitting just because the game was going badly. So don’t ask me why I let this stupid disease start taking me for the ride.

As I sit here and write every muscle in my body hurts and my thoughts are not exactly as clear as they were before this all began. But I know I have to fight this and gather the fire within to defeat it just like everything else I have beat in my life. For those of you who don’t know, my life was never that of the charmed. More like that of the severely unlucky but somehow I always made it work and had a life of success. A fabulous job, a number of friends and lovers who have come and gone from my life but always a desire to keep moving to show everyone I was someone.

And of course along that uncharmed life there were times when I would stumble and find it hard to go on but somehow I always found that fire to make it better. To fix it all. I didn’t just fix my life I fixed everyone’s life if they needed it and I could do it. And then one day I just get sick of feeling like crap and decide that I’m going to do whatever it takes to regain that fire within. Allow my true Dulcie to do what she does best – survive and succeed.

So no matter how much pain I have tomorrow (or I should say today) I am going to wake up and start reclaiming that life. I’ve decided I deserve better than this hand that has been dealt to me and so does my body. While I probably can’t fix this tumor in my head I can probably take more control over the things I can.

My commitments to myself:

· Eat better - go back to being a “veggie”…besides the animals of this world aren’t’ agreeing with me since this whole thing started; a result of the disease or not? I’m not quite sure but my stomach felt a lot better without the animals.

· Workout – no matter how much it hurts or how tired I am I need to preserve the body that’s going to take me through the rest of my life. You just watch, soon I’ll be running again and you’ll all be fighting to keep up with me!

· Stand up for myself – I’ll do whatever it takes to make sure they resolve this thing in my head, that I get my fair share of disability and other payments. If that means exposing people who do wrong than so be it.

· Eliminate waste – get rid of all the people in my life who aren’t supportive; who needs people around to collect dust and bring them down? I’ll get rid of all those obstacles from my past that held me down and continue to today.

· Allow myself to feel – you know in the past I was always afraid of showing people I cared or hurt or needed things but all I ever ended up doing was hurting myself. So I’ll cry if I want to and fight if I feel like it; all this suppression sucks!

· Focus on creativity – I was told several times by a number of people to use my talents in the arts to help me during the rough spots, I guess it’s time I put them to use…

· Relax – each day I’m going to make time where I don’t think about being sick or the struggles that I face and just breathe.

· Dream – remember how to dream and make them happen. Somewhere in all of this I forgot what it’s like to want something and make it happen.

And I’m sure this list will get longer. While I’m not sure I should push myself as hard as I’d like…too bad! This is my life and I’d rather die trying to beat this disease than continue sitting here and taking it.

I know that at times in this struggle to regain my fire I will probably slip and fall because of this disease and all that it has thrown at me. Your job, should you choose to accept it – SUPPORT! No matter if I’m having a sad day or a mad day you will all need to be there just to support me – no questions, just someone to listen. There is no more room in my life for people who feel they have the right to tell me how I feel and how I should be handling all this so leave your judgments at the door or else let it hit you in the ass.

Okay, if I’m going to accomplish all this and reclaim my fire, my Sagittarianism, it looks like I’ll need some sleep. I’m so excited I am not sure I will be able to sleep but off I go. Good night!

Me & Charlie Brown...

Ahhhh! I guess I should come to expect this. Anything that can and will go wrong will when it comes to me and getting a final diagnosis. Everyday I feel more and more like Charlie Brown trying to kick the damn football and having it ripped out from under me. And today is jus another one of those days.

Growing more impatient I decided to call the endocrinologist yet again, you know the “good” one that had originally confirmed this thing in my head needs to come out. Well as luck would have it she has left for vacation and won’t return until Monday. So much for next steps and getting some resolution! I’m not even sure what I’m supposed to feel right now and feel kinda numb at the thought of waiting some more. They might as well put a gun to my head and make this all easier. At least she could have called and said we didn’t see what we wanted and you need to come off the rest of the drugs. No chance. And not with my luck. At least then I could have had another mile marker to make it to.

But once again I’m in limbo. I’m trying to decide if I need yet another doctor or should wait it out. What do I do at this rate? Next thing you know my disability will be declined because of all this waiting…and frankly I can’t afford to wait any longer. So then what, I go back to work and get fired because I can’t work a full day and can’t perform my daily duties. Anyway, they’ll probably fire me anyway since they have already told me to not work from home or part-time and haven’t been supplying me paper work to properly file my disability. Yet again, more delays and growing frustration to add to the list. I called my accountant and it’s not good there since I can’t file for my tax refund without the paper work either.

I called NY State today about my disability payments and it turns out I may have to wait another 8 more weeks for any sort of resolution…more issues due to a lack of paper work.

I feel like I’m suffocating over here each day trying to do the right thing and get things done and removed from my check list but each day the list grows. I can’t seem to crawl out from under this pile of frustration.

Damn Lucy for stealing the football…one day I’ll get her! I refuse to be a Charlie Brown!

Strange Dreams...

All this week my dreams have been very bizarre. So weird in fact, that I can’t tell reality from dream and wake up wondering if I was awake while thinking that or was I sleeping. I guess strange things happen when it’s 3 in the morning and one is lying there half-awake. It’s almost as though I am hallucinating because things that happen are real and could really happen they just are more vivid and alive.

So last night I had this dream of a new cure for Cushing’s. Apparently Cushing’s was created by terrorists to take over the world. I guess their thinking is that if we are all sick with Cushing’s that the world would fall apart and they don’t even have to fight us. So half the US is consumed with Cushing’s but it’s getting so bad that people are just dying left and right since the disease has found a way to progress at an extremely fast rate leading to a more swift end result. And since I was one of the first Cushies as a result of the terrorists I’m not quite as “updated” as those who follow.

Anyway, I get this brilliant idea to have my friend create a software program to override the Cushing’s in our bodies before it kills us. Thrilling idea I know. So we sit around and I’m getting weaker and slipping more and more into my hallucinations trying to devise a program. He keeps me there for the science since I know that part but then he tries to translate it into software…very compelling drama as you can see. Meanwhile the entire planet is having things go wrong because people are expiring behind the wheels of their cars, at their jobs at the power plant and it’s just a big disaster.

So we get the program written but have no clue where to put it in my body so it works…logic tells me it should be the brain since it’s the computer of the body and runs everything. My friend so kindly decides he can perform this surgery and does so.

This is when I wake up...I couldn’t handle finding out if it was true or not but for a second I had to check my head to see if he really went in. Wishful thinking I guess. Anyway, it would be a really cool idea if we could figure out…I guess that would be the end of the drug companies though.

I know, you’re wondering if I was on drugs. The answer is no, just excruciating pain running through the lower half of my body perhaps resulting in some strange brainwaves creating some very unusual dreams. I don’t think I’ll share the others I had this week; you’ll think I’ve really lost it.

Or maybe I have just watched too much Sci-fi in the past. Perhaps one too many Twilight Zones, or something.

Okay, I’m going to go before I start babbling about something I really don’t’ want you to know…and for the record…I don’t really think this one could have happened but it might be something to look into for the year 2050…

The Waiting Game

So I'm still waiting for my tests right now. It's acutally been fairly easy this time. Must be after seven times one gets used to waiting and being told the doctor will call you back. Anyway my labs are in she just hasn't had a minute to review them and decide next steps so I sit here and wait.

Good thing is an even more cushy day - probably the worst I've had since the beginning of January. Every muscle hurts even those I use to type. I've barely moved from bed except to eat and go to the bathroom. The area between my shoulder blades is so painful that it hurts to even lie down. And it's a good thing most of my floors don't have carpet - it makes it easier to drag my feet across them. Those strange headaches are back; half migraine and half like a fluid pressure that makes my head feel like the ocean decided to spend a few hours there.

So as I sit here and wait and the time trickles by. Meanwhile in my head it feels like it's been days. I think it's the cortisol levels that do that, make me feel like I'm on speed and the clock is moving too slow.

My head is so foggy right now I can barely see to type and when I try to read this I can't remember the sentence before. I guess it's a sign to make this one short. Besides I'll probably be able to write you all again at 3 am.

I wish they'd just call but then again I don't think it matters that much to me today. I have no energy for anger today if I don't get them. So I'll sit and wait some more...

Okay I better lie back down before I fall over...

I'm Not Alone

Sadly I'm not alone with all these feelings and this tumor in my head that is causing all sorts of emotional and physical issues for me. Today I woke up feeling more "Cushy" than I have in a while. Perhaps it's because the drugs have finally left my system or maybe it's because I'm stressed waiting for tests. I’m waiting for someone to “cure” me and give me my life back. I try everyday to keep parts of me alive and have a positive attitude but waiting on others to determine your fate sucks! But I’ll keep waiting and hoping that it comes soon. That’s all I have, unless I become a surgeon and fix myself. How scary is that…

Anyway, did you know that Cushing's patients no longer can deal with normal stresses like everyone else. Why you ask? Well, apparently our adrenal system has been on overload so long causing all these problems that we no longer have the chemical and physical tools to combat stress like you. The adrenal cortex (adrenal glands and pituitary that rules them) was designed to help you deal with stress and increase secretions of various hormones at times of stress helping people "deal." Well since we are already maxed out and living at that level we have no additional tools to help us deal with the disease and the havoc it makes of our lives.

I’ve been getting involved with the Cushing’s Support and Research Foundation and have met some nice people. One of the ideas was to help put faces and names to a disease which no one understands. They were kind enough to send me an entire book (100 pages) of stories of people just like me. And that’s how I really began to realize that I’m not alone going through this. I know my family and friends have tried to understand but there is no way that they really can. I mean it’s hard enough for me to deal with and try to understand a total lose of control over my body and mind much less have others understand it.

So I started reading all these stories and could see so many pieces of myself and my story in theirs that I began to cry. I cried partly out of relief and partly because I can understand their suffering and feel the pain. There are things I can’t even explain and couldn’t understand that they were happening to me until I read these stories. I wish I could share them all with you so you could see that this is our “normal.” We all have lost friends and family members due to our disease and our struggles because they can’t understand and think we are crazy. We have little choice in our actions and feelings because they are all being controlled by this disease. I know that sounds like a “copout” but the cortisol and other hormones really do have a strong effect on us.

In reading these stories I’ve found out that I’m not alone in my depression, frustration and anger. We all have it and it’s all caused by this horrible disease. Yes, we may have issues with some people around us but they tend to be exacerbated by the cortisol running through our bodies. They say 90 percent of people with Cushing’s suffer from depression! And guess what, after surgery it usually all goes away except maybe some of our anger against the medical system for letting us suffer for so long. And sadly, some of us will never get our “minds” back to the way we used to be and need to choose alternate lifestyles. I don’t plan on losing mine! And happily some people make changes in their life and are happier than before!

I wish I could share all theirs stories with you so that you could see that I’m not alone in this and that there are millions of others like me. Maybe then you could understand that what I’m telling you is really happening – I mean come on, we all can’t be delusional and sharing the exact same experience.

I’ve found several articles lately about what is the best way for us to cope and deal with all these feelings and the best medicine is support from people you love and trust. I recently started eliminating people who can’t offer that since it’s not my job to make you feel better about me. I’ve also consulted other medical experts (like my doc and others)…and trust me psycho therapy would fail for a number of reasons…maybe later when I have time and need to get over what has happened but not now. Not now because I have too many other fish to fry and a body and mind that I have a hard time controlling. Trying to remember a doctor’s appointment is hard much less trying to find out why I think I did something to get this and why bad things happen. And the bad thing that doesn’t allow me to feel better and get better right now is CORTISOL! The verdict…I’m not allowed any drugs and the ones out there could actually push me over the top and lead to death by my own hands. So I guess counseling and drugs are out for now.

Anyway, the best thing right now is just to gather around friends and family and strangers who can offer their support without judgment. Please, we spend all day judging ourselves and trying to figure out what we did to get this disease and decide if we really are crazy – we don’t need any help here. All you have to do is listen, try to entertain us with stories or take us to do the things we still can…let us take the lead on talking about our frustration of waiting for answers and having to be retested and everything else…

So for now, I’ll take comfort in reading these stories that sound so much like me and know that I’m not alone. And I’ll get hope from those who have gone before me and survived the various tortures…

The Top 10 Reasons I Love the Possibility of Cushing's!

10. The boobs - I finally know that I don't want DDs.

9. Meaningless conversation - I don't remember half the crap people say and I don’t really care

8. Food - I get to eat cake and cookies guilt-free because it doesn't really matter my belly still grows and I get a free makeover when this is done without dieting - Who wants to do the big reveal party?

7. Confuse people around me - I can freak people out by telling them I'm pregnant...and still am months after the baby was due!

6. Anger - I finally have enough anger (because of what I like to call cortisol moments) so I can tell people what I really think ! This should be interesting and I recommend ducking!

5. Drama- It feels good to finally cry it all out after years of hiding it - who knew that it was okay to cry! No wonder they always cry on TV!

4. Scapegoat - I can always blame it on the tumor!

3. Leisure time - I have plenty of time to do whatever I want or NOT!

2. I’m hot! - It makes you feel like your old self is just as hot as Jennifer Aniston – Hey, maybe I can get Brad when this is done!

1. A redo - I can start over when this is finished after ridding myself of some undesirable baggage

Watch out world here I come!

Okay, maybe not this minute, and probably not soon enough, but at least I can poke fun at some of this crap!

Holding On

I know lately I've been a bit of a bummer and those who have been so great to me were probably feeling like I wasn't very appreciative but it's exactly the opposite. It’s just that the frustration and loneliness has been unbearable as of late and some days I wonder if I will make it through. And for those couple of people who are holding my hand - I can't say thanks enough.

Lately I've been very frustrated not only by this insanity but also by the people who say they care but don't do anything or say anything. I guess expecting people to do what I would is not realistic. While I would give anything to help my friends and family I can't expect the same in return. People do things for their own reasons and maybe some just can't handle what I'm going through. Or they just don't know what to do. Whatever the reason I need to count on me and stop worrying about others and what they would do – I’m not them.

A friend of mine told me once that I can’t expect people to do what I would because it only hurts me. And until now I guess I didn’t really understand what he meant. I know some days I can’t handle what is happening to me but since I’m living it I do not have much choice.

Today I had a great email conversation with someone who has been missing from my life for quite a while. It made me realize that I should try to hold onto what I do have that is good. And while that may not be much, I still have a couple of people who are putting up with my crap and trying to help even though they admit that they can't possibly understand. What matters is that they are there for me and aren’t asking me to change or telling me how to feel.

So for now, and for this moment, I'm trying to hold on to the couple of people and the few things I have left that make me want to fight this crap! And while I feel like it's not a lot it is better than being totally alone. I can’t focus on what I wish people would say or do because I am the one that gets hurt in the end. I just have to do what’s best for me and do it the best that I can for me – not anyone else! We’ll see how long that lasts…

And for those who are helping me hold on – THANKS!!! I know it’s not easy some days but thanks for letting me be me and just being there!

Okay, off to appreciate my cat who has been oh so supportive – as long as I feed him!

Searching for Passion

For those of you who know me, you know I'm not a person that does things without passion. Whether it's been my work or at play, people have always used the word passionate to describe me. I'm passionate about everything from the people around me to the things I do. There is little that I don't do or give my whole heart too and maybe that will be my downfall in life. And maybe that's why I'm so disappointed right now.

Well anyway, these days I've been searching for something to be passionate about, to put my heart into, and I have to say with little success. Maybe I'm expecting too much. It's hard to get excited over doing a puzzle or taking your meds and it's leaving a big hole. I'm not quite sure what I'm supposed to do about it or how to fill growing hole in my life. I need something to put my heart into.

And yes, I know I have my limitations now and maybe living my life without limits in the past has put me in a place of disappointment and longing. Everyday I wake trying to find something to fill that need for passion and come up with nothing. Perhaps I'm looking in the wrong places but I don't know where to actually look. I try to get excited over making a batch of cookies or about writing for you here but something is still missing. Sitting still has never been a passion of mine. I like to get out and do things. I like to make a difference in the lives around me and the people I choose to be part of that life. And what difference can I make now? What do I have to contribute?

It sounds like I spend my time trying to make others happy and perhaps that is why I seem to be looking in all the wrong places. I'm not really looking for others to give me the passion I so truly love but the passion I get from being involved in peoples lives and having some sort of impact. Sometimes it's a positive impact and others it not necessarily so but either way it's making some sort of difference. Making a difference is what gives me passion.

Perhaps I need to find something else and stop giving so much of myself away. Perhaps I should keep the things I love to myself and just pay attention to that for a while. I can try to be passionate about my painting and my writing and any number of other things. And I can still be passionate about my family and few close friends but just focus it on a different level since right now I can't be the real "me."

Well, I'm off to find some passion...

The Tests Are Coming!

Today is pee in the cup day! Yippee another 24-hour urine test! Have you ever tried to aim at something you can't see? These tests were much easier when I could see over the large round bump that has become my belly. Better yet try remembering to pee in a cup in the middle of the night when you don't want to turn on the lights because then you'll actually be considered awake. Beware of the light but also watch out for the mess!

So anyway, tomorrow they get to steal another few pints of my blood for testing. There is good news though...I don't have to fast this time. I’ve only had this blood test about seven times now so I should be an old pro at it. The truth is that I still hate needles and it's probably a good thing that I'm not diabetic. I'm so sick of being stuck and having my blood drawn. Hey, leave some for me in there! Let's see tomorrow we're running another ACTH, Cortisol Serum, Cortisol Urine, Urine culture, IGF-1 (insulin growth factor), Growth Hormone, DHEA, and a couple of others that I forgot.

Let's hope they turn out right this time. I really hate the thought of coming off the blood pressure meds and besides my blood pressure is still borderline high at times even when I'm on these drugs. I don't need a reason to sit up and worry about a heart attack or stroke all night. I twitch enough as it is!

By the way, the drug withdrawal bites! Today I'm so nauseous and my headaches are back. Please keep all sharp objects away or I'll be taking them out to use on my head. Not to mention the rooms are moving on me again because I'm so dizzy. You'd think I was on drugs not off them with the way I feel and the way things are swimming around the room. It's like I was swallowed up in some vortex and you all decided to play tricks on me. Or one too many times on the rollercoaster!

Perhaps after tomorrow though I can take the meds for my new kidney infection! But I still may need more tests in a week or so...ugh, I can't seem to win. And still no pain killers for the headaches.

Okay, back to lie down - the keyboard is beginning to move!

Feelin' Lazy

Ahh, finally I caught a good nap of about an hour. You're probably laughing and thinking I'm slightly crazy about having taken such a short nap. But I can't tell you how good it felt to not wake up every 15 minutes and look at the clock wishing it was morning. It gets kind of lonely at 3 am when the world is asleep.

And now that I'm awake I feel like a slumbering bear trying not to move very much. I can't believe how tired I am. My body feels like a ton of weight but somehow I feel slightly at peace with this odd sensation. It reminds me of when this all started to "kick in" back in September. I'd sleep the entire weekend and only come out of hiding for food and to use the bathroom for two whole days. I did it twice in September! Ahh, probably 40 hours of uninterrupted sleep in one weekend.

The muscle tremors are still there but I don't feel them today and can only see them as I hold the remote and switch the channels. I finally feel somewhat at peace not being able to move and finally able to sit still without feeling as if I'm going to have a heart attack. The fatigue that has overcome my muscles is overwhelming and there is little I can do to make them move but at this point I don't really care. I think I'll just relax and enjoy my inability to move. Getting off the couch today is not on the agenda.

And wouldn't you know the sun came out this weekend so now I feel guilty at not getting out to enjoy its warmth and brightness. I've decided that it's okay though since I can see it while I'm lying on the couch. I’ll just let my imagination take me outside today.

Taking the Day Off

I'm taking today off...drug withdrawal is no fun and I've developed another kidney infection which I can't treat until after my tests on Tuesday...I'll be back tomorrow...hopefully with something a little light-hearted.

Until then, thanks for reading. :-)

I Wanna Come Out and Play

I’m sorry but it’s one of those days again and I envy everyone who gets to live their lives. I want my life back and I want it now! Patience has never been a strong suit of mine – just ask my mother! And today is one of my days where I’ve hit my limits again. Don’t worry I’ll be back to normal again soon. I’m fairly good at controlling my feelings and getting through this crap but I just want to feel better for one day. That's all I'm asking - just one and then I can see this thing through.

Anyway, I feel like such a taker right now. I can’t do anything for anyone and all I do is call and say can you help me! Please I’d rather be the one getting the calls than me because that’s what I do best. I give and I hate to ask. I hate asking for help and it kills me and so far that’s all I get to do and everyday I get to do more and more of it. And then I get mad and just try to cut everyone off but then I realize that I can't because I need you all to help take care of me.

I’m so damn jealous of all of you who get to go to work and bitch about something other than being sick. Do you know how much I wish I could just say my boss is a jerk? Sit behind my computer and look stuff up other than the weather and boring news. I have had enough of the news and I’d rather be reading some boring email from IT at work about how our email system will be down for the next 24 hours for some unexplained reason. I want to not have time to get away from my desk for lunch and be stuck on conference calls. Sure you hate work but at least you get paid. I haven’t had any money in two months now and it isn’t going to be coming anytime soon. I want a damn paycheck.

I wanna read a book and recall what I’m reading more than two pages into it and remember where I left off the next day. I can’t even read a magazine because all the articles jumping from page to page confuse the hell out of me. It’s getting so that reading my bills and figuring out what comes next is confusing. If I’m lucky enough to get outside for lunch I can’t even decide what to have since the menus overwhelm me and I have to have someone else tell me what to get. I feel like someone’s little kid that has to be told to do everything!

I want to wear my “real” clothes. You know the ones with zippers and buttons and the sexy little tops with a nice jacket over top. I want to do my hair and feel pretty and have a manicure or pedicure without cringing because when someone touches me it hurts like hell. I’d give anything to look and feel like me just for five minutes!

I’m sick of planning when and where I get to go – like to the store for food or to the doctors. I have to have people take me everywhere I go and treat me like I’m some little kid. Trust me I know it’s needed and I appreciate more than anyone will ever know but right now, right this minute, I want my freedom to do exactly what I want how I want it. All I do revolves around being sick!

And now I have to get a roommate which will be the death of me. I seriously don’t want one and don’t want to be sick around some stranger who could give a rat’s ass if I feel good or not. And to top it off I have to “fake” that I’m okay to get one because who wants to live with a sick girl? All so I can try to save my life in NJ long enough to get surgery and get well to go back to work…even with a roommate I don’t know if that is going to happen. And what happens if I get some psycho who wants to take advantage of me while I’m sick in bed after surgery and can do nothing to keep them from stealing my stuff and taking over? I wish I was rich!

Trust me, I don’t want to be alone. I’d just like to do normal things with my friends and actually enjoy them…like going out for dinner and drinks or shopping and trying on some really great shoes. I’ll do anything that doesn’t have to do with this stupid disease and me being sick. It’s been about five and half months now and I’m going crazy! How about going for a run or to a class at the gym? Anything but having to sit here and be sick and watch everyone else live their lives!

I know this sounds horrible but I’m so jealous of you all! I just want one day where I don’t feel sick and then maybe I can keep going long enough to get this thing out of my head with a positive attitude.

I’m just sick of being sick. So I’m sorry if upset anyone. And if you think this is me being stupid I can’t help it – I’m allowed a day to get pissed and upset just like everyone else the only difference is what we get to bitch about.

A Soccer Mom-to-Be?

Pregnant women have discovered a strange affinity for me lately. I think it's the bulging belly and sort of waddle I have developed so that I can carry this load that has become my body. Everywhere I go pregnant women and new mothers eye me like I'm the newest member of the soccer mom-to-be club. Please if this is what it feels like to be pregnant I have definitively decided not to go there and for those of you who have, you have my deepest sympathy.

I love food, and no that’s not what made me look like this! But pregnant women and I seem to either love it or have a complete adverse reaction to it. It can make our toes cringe upon the slightest thought and at other times we are tearing through the fridge like a bear coming out of hibernation. And then we eat and it likes to give us stomach issues. You know the kind that make strange noises and cause us to makes funny faces as acid arises in our throats. Yuck!

Comfort. An issue I have discussed many times. Let’s face it, I’m wearing the same clothes as they are except I’m too embarrassed to go to Motherhood to pick out the good stuff and besides I don’t plan on looking like this very long and hopefully not for nine months. Besides a key differentiating factor is they have a husband to purchase those expensive clothes most of the time. So for now Old Navy will have to do until I’m my rock star-self once again.

And the stomach keeps getting in the way. We can’t walk right. If you lined us all up we’d look like a family of over-sized ducks. The only thing missing is our quack but if we talked enough I’m sure you’d hear it. Not to mention trying to sleep with a basketball stuck to the front of you. Forget trying to roll over, you might actually bounce to the other side since it’s harder than any army-cornered bed. Screw bouncing a quarter they should try our bellies! Although I think mine feels more like a rock and it keeps trying to grow up toward my lungs. Umm, hello, I do need to breathe here! Oh, and so do the rest of my organs which are being squeezed to death! Now pregnant women have a simple reason for this, it’s called a baby. My excuse is called growing pains and they are something I used to laugh at my younger brother for having when he was growing to his 6’4”. I guess payback is hell! Growing pains were much easier when it was just my breasts because then I could just get excited that I was actually going to start looking like a girl.

Although pregnant women do have something I don’t at the moment – great hair and great skin. As we have discussed, my hair is lacking its former luster while pregnant women get this great Rapunzel effect. Not only that but they get this skin that’s like some porcelain doll. What do I get? I get flakes and scales like a fish out of water and wounds like I’ve been shot a million times by someone’s pellet gun. Gross!

Okay I do have one advantage, I can be done with this in a shorter period of time (hopefully) and they are stuck for at least 18 years. Now I know people will argue both sides with me but right now I just want this to be over…no soccer mom-to-be club for me. But thanks for the offer!

Drug Withdrawal Begins

So as you can see it's 2:20 in the morning and here I am once again, not sleeping. I woke up feeling a sick to my stomach and a little dizzy. UGH! Drug withdrawal already? I guess it can be true. I have been sitting here for the past hour doing some research and the internet doctor has indicated that it is very possible when one has been taking very strong drugs.

The Topamax my neurologist put me on for my migraines is nasty stuff...no wonder the endo asked me why he would put me on that as a quick fix for my headaches. I noted he thought the cortisol would be causing my headaches and that I would need to see an endo to resolve that issue. So basically all he did was screw up my blood work and put me in this situation where I have to go through drug withdrawal to get this thing taken care of. So much for the band-aid!

The Topamax also explains the itchy, burning eyes I have been having...a very bad sign. Thank goodness I am coming off it as I would hate to ruin the LASIK I just had done in September. Apparently you get withdrawal immediately and I can look forward to a day of headaches, seizures and hanging myself off the side of the toilet. Oh, and I forgot to mention, I did some reading and Topamax is supposed to help with severe pain. What a crock of bull poop! It's supposed to help with pain similar to drugs like percocet and other happy pills. It didn't even touch my pain. I guess that helps you understand my pain level.

Anyway, the cortisol continues to make me crazy! So, even with my doctor's reassurance that I have an ACTH-producing tumor (the one on my pituitary); I still feel like I'm going to wake up and have this be a bad dream. (Note: Bad dream meaning no resolution to how I am feeling and no conclusion to this story) I guess that's the risk of putting yourself out there or here. Even after she told me she thinks my tumor will have to come out I still am driving myself crazy - or the cortisol is! While I know I truly am sick the damn cortisol makes you believe some weird stuff or not believe as the case may be. Besides, even the doc thought the pics of me said more than anything else and she just kept looking at me physically saying that there was something obviously wrong here...not sure that made me feel all warm and fuzzy but at least it made me feel sane. This cortisol is one very cruel drug! It's the bully on the mental playground of hell!

You must think I'm nuts to believe all this but I just want you to see what this disease and cortisol thing does to a person. Mind you, I'm a well-educated person who has worked in the healthcare field for more than 10 years now. I know the industry and sometimes read medical journals for fun so can you imagine the thoughts I would have if I was someone outside the system?

Sorry to Keep You Waiting...

To my readers, I'm sorry to have kept you waiting so long. Today has been a long day and without much sleep the past two days have become one. I'm exhausted and emotionally drained but I figured I owed you all an update...besides; the cortisol keeps me from sitting still or getting a nice little nap.

So away, I really like this doc. She listened to every rambling word I had to say and even saved my pictures for her files. She outlined the problem for me and has outlined a plan to get to a solution - wow a doc with a solution - will wonders never cease!

The problem - in the beginning of all of this I was showing signs of a ACTH producing tumor (which would be the one in my head). Not really a problem since this makes sense and is in line with the MRIs but somewhere along the line my blood tests started showing issues with my adrenals. Meaning my chemical levels changed and made it look like a problem with my adrenal glands vs. my pituitary. Then I was put on a lot of drugs to deal with the various problems all of these chemicals in my body were creating and it has once again altered my blood work...creating a problem in getting a "clean" diagnosis. As you can see this is very confusing!

Anyway, it is likely the tumor on my pituitary is causing some issues but I need to be drug free to prove it once again so I can prove that it has to be removed...

The solution - take me off the drugs, cold turkey. I need clean blood to get the results that we need to make sure that the pituitary tumor is causing all these problems and that I truly do have Cushing's.

This is going to be extremely painful but hopefully worth the pain since it will lead me to a final solution. The doc was kind enough to point out that there is an obvious problem by looking at me and by looking at my MRIs. She did indicated that she believes that the thing in my head needs to come out we just need to get things right to get to that point.

And the closing statement was key - apparently many people are out there like me going through this and we all feel like we are insane, we aren't and technically the cortisol is making us insane but really we aren't...so really even though I feel insane I'm not - get it - I'm not insane!

Yippee - there is something wrong with me and I am not insane...okay off to cut myself off the drugs, go through withdrawal and try to cope with headaches worthy of ice picks! Wish me luck!

The Tortoise and The Hare

The past few hours of my life have seemed a never ending race like that of a childhood tale, The Tortoise and The Hare. However, in my story there will be no winner since the clock defeats us both.

The cortisol has driven my body all night as I lie awake waiting for the minutes to pass by until the doctors appointment at precisely 11:15 this morning. Or at least I hope she runs on time.

I feel like hours have gone by when only a couple of minutes have passed according to the clock. I once again feel like that tortured child on Christmas Eve waiting for Santa to come and for my parents to allow me to drag them out of bed. I'm sure they remember me, being the bold child, creeping down the hall to their room every half hour and sometimes every 15 minutes to check and see if we could get up NOW?

Last night I tried everything. I tried the iPod, removing clocks, meditation, sleeping upside down in my bed (a trick I used when I was little), a little TV, some darkness, my cat, and a number of other things. I was up so long I had to eat again since I grew extremely hungry after eating dinner at 6 pm. I guess that happens at 3 am.

This morning is more of the same. As minutes slowly tick by the cortisol has taken control and I sit here typing words faster than lightening and I can't even type fast enough to keep my thoughts straight. They are random and scattered - good thing for my editor!

The other thing is the pain. I can't decide if the pain keeps you awake to realize it or if you realize it because you are awake. And who would have the pain, the tortoise or the hare? The tortoise maybe because he lives the longest and looks all old and wrinkly or the hare from running around acting like a lunatic...maybe both...and since I feel like both does that make me similar to a jackalope except I'd be a tortoihare?

Okay, I'm going to go now before I get any more whacky ideas...I'll wait in the privacy of my home for the doc appointment...