No tumor found

So, the MRI and CT scan showed 'normal.'  I knew it was a dinstinct possibilty as most everything I've read is the small pit tumors don't show on normal MRI's, especially without contrast.  It was still so hard to hear as I was so hoping to keep moving forward.  The sucky part was after she (the endo's PA) told me this, she went on to say that the last labs I had done (the fasting labs and dex suppression test) were messed up by the lab and so I needed to have those repeated this week.  Nice.  I go back tomorrow and the next day to have all that re-done and then back to the Endo next Tuesday for those results and to discuss next steps.   The worst part of the appointment is that the assistant who was giving me all this information is so uninformed on my disease.  She knows very 'basic' information on the disease and kept saying things like, "when we get these medicines straight, you will start to feel better."  Ummm..no lady.  Cushing's does not work like that.  Until this tumor is gone, I will not feel better.  All the vitamin D and blood pressure medication in the world is not gonna work any magic on my body--these are all symptoms of my disease.  The sad thing is she knows she doesn't know much.  She told me after this appointment, I would only see the Endo and not her since she was just a 'middle man.'  I was like, Thank the Lord....
In my research, I know I need to have a more detailed MRI done so that is what we'll be talking about next week with my endo doc.  I honestly don't know if my town has the MRI machine I need.  If my endo doesn't know or he isn't willing to act quickly, then I am going to dump him and move on to the clinic in Atlanta.  This is where I'd have surgery anyways and since the office is only 1.5 hours away, there is really no reason not to.  I called today and no referral is needed--that was good news.
The thing is..deep down, I still have the peace and faith that God has me in His hands and that all is His time and not mine.  This is a life lesson I learned through my son's illness.  But today, I've had a nice little pity party and have really struggled with why things never seem easy for me.  As the day progresses, I am feeling better, have stopped crying and I think I am ready to get back up and fight again.  Dusting off...

Going for some results...

I have an appointment at 9 in the morning for the results of my MRI & CT Scan.  Dear Lord, please let them have found my tumor.  Amen.

A couple of good days but...

here come the bad. I hate to sound so pessimistic but I know when I have a few 'good' days, bad days are looming close by.  The sad thing is a 'good' day for me is just a day where every part of my body isn't aching, only a few or I only wake up to pee 10 times, not because my legs and feet are cramping up.  The bad days are well..they are hell.  Everything hurts, even to breath sometimes.  It is so hard to describe but it feels like you are dying and in reality, you are and that is scary and overwhelming.  I go Monday for the results of my MRI and CT scan and my prayer is they have found the enemy that is causing all this chaos.  I want surgery now.  Off to the kitchen to look for a sharp knife..TOTALLY KIDDING.....but seriously, I really want to get this show on the road!!

Nightmares

Last night, I had nightmares about my next doctor's appt.  This next appointment is so important because they will tell me if they located my tumor that is causing all my havoc.  The first one, I dreamed that they couldn't find it..the next, they said they found it but it was on the base of my brain and they would need to crack my skull open and shave my head.  I keep reminding myself that this battle is my God's and not mine....need to keep praying!

Crazy day!!

So, I woke up not feeling well..imagine that.  Then, my hand started the 'tingling' sensation where it literally feels like you are on fire on the inside.  By the afternoon, I felt 'drunk'....took a nap and woke up irritable as all get out...then got sleepy again...got up to get all ready for Monday and my lungs feel like I've had pneumonia.  Now, I am sitting here typing and getting sleepy again.  I feel like I've been on a freakin' roller coaster.  This disease is insane.  INSANE.

One night of GOOD sleep...my wish.

It has been so long since I've slept through an entire night.  I would love, love, love just 1 night of sleep...pure sleep.  I get up to pee about 3 times usually and if that is the only reason I wake up, that is considered a 'good' night.  Most nights, I am up just to be up..well, now I know it's because of the cortisol but I am wide awake at 3-4 AM.  Some nights, I am so awake that I could get up and clean the house but of course, I don't want to wake up my family so I just lay there and either watch TV or think.  I sometimes make my 'to do' lists-lol.  I think that will be the best part of surgery--being knocked out so I have to sleep--how sad is it to think like that?  I am so sad-LOL!

CT Scan today

I had my CT scan today so they could get a good look at my adrenal glands.  The test itself was easy and uneventful..technician was great but the contrast stuff they make you drink..OH MY LORD..that stuff is the worst.  It isn't the taste so much as how much you have to drink.  I thought I was gonna hurl.  I had to drink a big container of it 2 hours before, another glass full 15 minutes before and then another small glass right before.  Uggh.  Then, they inject the dye, which again was not a huge deal but when it hits your bladder, you feel like you have wet your pants.  They warned me thankfully or else I would've swore I peed in my pants..lol.  So, now, I have to wait until the 29th for all the results.  Wait...wait..wait.  I am so impatient.
In the meantime, I have to meet with the dietician at my endo's office.  My endo wants me on a diabetic-type diet until after surgery.  Good times ahead. 

Just tired...

I am so tired of being tired.  I am tired of feeling bad.  I am tired of having no energy.  I am tired of being so emotional.  I am tired of hurting.  I am tired of not sleeping.  I am tired of not recognizing myself when I look in the mirror.  I am tired of people worrying about me and wish I could take that from them.   I am even tired of having these little pity parties...geez.  Come on surgery.

Learning....

So, I have figured out that when my cortisol levels are 'high', I tend to feel on a high as well.  These are my better moments.  When it drops, I have horrid days.  Yesterday was a horrid day.  Putting one foot in front of the other was a major challenge, my breathing was 'off' and I could literally have went to sleep if I closed my eyes for more than a second.  I hate those days because it makes work so difficult.  I can totally see why a lot of people with this disease end up quitting or working half days.  I don't have that option so I suck it up and move on.  Okay, pity party over.
Today has been a pretty good day.  I have had a few breathing issues and I am tired as always but overall, I have felt pretty good.  Mood-wise, it has been a good day...everything is funny to me today..plus it is Friday..woohoo. 

Playing doctor

So, I had my MRI yesterday.  It was supposed to be with and without contrast, however due to my veins not cooperating, we only got to do the regular/no contrast part.  The guy who did it acted fairly confident that the doctor would be able to read it without the contrast but of course couldn't say 'for sure' since he is not a doctor.  He told me they'd let me know if I needed to come back to do it with the contrast and I haven't heard anything.  I am assuming they saw something.  Of course, my impatience got the best of me and I looked at the CD they gave me to give to the doctor and compared them to MRI images online.  I *think* I saw something but of course in reality I know I have no idea what I am looking at...lol.
I go next Tuesday for a CT scan of my adrenal glands and then wait 1 week and then get all the official results.  I am just wanting a Pit tumor to be found so I can get onto a surgery date.  It's so hilarious to me to hear myself say I want surgery and want a tumor.  But with Cushing's..that is what you want..to find the little booger causing so much trauma and to GET.IT.OUT!   The road to recovery is long, I know but I am ready to get started on the journey.  It has been so incredibly long since I've felt 'good' that I don't even remember what it feels like and I cannot wait!!!

Little or no sleep...and MRI tomorrow.

Oddly enough, I sometimes feel better when I don't sleep well at night.  Last night, I was wide awake most of the night and I felt good laying there, just thinking or watching TV.  Of course, about mid-day today, I totally wanted to crash.  I go for my MRI tomorrow..hoping this crazy little tumor decides to show up.

Feelings and such...

One thing about this disease that constantly amazes me is how it affects every single part of my body.  The 'physical' parts as in the body pains are easy to understand but the way it affects my emotional state is just wierd and hard to get a grasp on.  For someone who has never expierienced this craziness would think I was insane if I tried to really explain how I feel from day to day.  There are days I literally feel drunk, like I've had one too many.  Off balance, in a 'haze', everything seems good to go no matter what happens.  The next day, I am ill at the world, for no reason at all.  I have to tell myself to 'be nice' all day long because if I don't, I'd be yelling at everyone all day long.  Then, there are days where I just want to cry all day long.  It's like being depressed, yet you are not really and you know you aren't..you are well aware that the disease is causing this chaos.  Then, the next day..you feel normal emotionally.  It is the wildest roller coaster ride one can imagine.  How can cortisol cause so much damage??  Crazy...