5 months post-op...

My surgery to cure my Cushing's was 5 mths ago.  I am still fat and round and still get tired quickly.  I guess I was hoping that by now I would see some major improvements even though I was told it can take years to feel and look 'normal' again.  I am still on dexamethasone..without it, I feel like death.  At some point, I will have to try and 'wean' again but the thought scares me to death because of how sick I was when I was taken off the first time.  Okay...so, it's not all bad.  My hair is thickening back up and growing and I don't hurt nearly as much as I did.  I guess I am just so sick & tired of not being well so I am whining today.  I so long to be well and be able to spend an entire day out and about without paying for it the next day.  Everyone tells me I look so much better in terms of the color in my face, etc and that along with the other small improvements tell me I am on my way to healing but I sure wish I could speed it up.

Still alive =)

Doing okay..million times better than I was.  Of course, I am still on steroid replacement, which is a blessing and a curse all at the same time.  Weight loss of course is very difficult on steroids, which sucks because I was starting to lose and then well, here we go again.  But, without the steroid, I cannot function and sadly, I cannot live without it because it would eventually lead to adrenal failure.  They are optimistic that my pit gland will kick back in eventually but as to when is anyone's guess.  Steroids can do all sorts of damage to joints, etc in addition to the other crap so it isn't ideal to stay on them for an extended period but in my position, there isn't another choice.  Cushing's is determined to 'stick it to you' even when it's gone!! 
But, in good news, I can function these days.  My energy level is better although I still get tired fairly easily.  The really sad part is it has been so incredibly long since I have felt 'good' or 'normal' that I don't even remeber what it is like.  I wonder when that day comes if I will know it-lol.  In comparison to the average gal my age, I still feel pretty bad and I know that but in comparison to how I have felt, I am doing pretty good.  Baby steps for sure but they are steps!  I am doing my best to keep my faith in my healer, Jesus Christ--I know He is there and I just have to keep holding on to His hand and keeping on...One day..all will be well.  I feel that deep down.

Thank God for steriods!!!

I still have a long way to go in terms of recovery but where I am today versus 2 weeks ago is mind boggling.  Since they put me back on the dexamethasone, I can eat and haven't been nauseated at all, which has been a welcome relief!!  I look back and just cannot believe how sick I really was for so many weeks.  It really is scary to think your body is shutting down on you.  I hate having to be on steroids to even function because they have so many of their own side effects and potential disasters but at this point, I am loving the roids-lol. 
Lots of people are starting to tell me that my face is shrinking and they are starting to 'see' the old me again.  I still don't see it but it has been really nice to hear.
So, for now just taking it one day at a time.

Long time no post...

To say recovery from Cushing's is rough is quite the under statement. To catch up, my endo stopped my steroid replacement in May.  All my tests were 'normal'---how many times do Cushing's patients hear that even when you know something isn't quite right? Anyways, about a week later, I lost my appetite.  Just couldn't eat...nothing sounded good and I was just never hungry.  Shortly after, I developed diarrehea like I had the flu. Then, the nausea and vomitting started.  The vomitting was strange because it wasn't every day but almost every other day and it was violent.  I'd puke all day long.  Miserable doesn't begin to describe it.  It was the never ending flu.  I called my endo and was basically told this had nothing to do with Cushing's, surgery or recovery.  Basically, I just had a 'cold.'  The symptoms didn't stop, I was feeling worse every day.  I ended up going to my general practioner hoping for at least something for the nausea.  He said he didn't know what was wrong but suspected a bacterial infection in my intestines.  He gave me a strong anti-biotic and medicine for the nausea.  The anti-biotic just made me feel sicker and I ended up puking more.  The symptoms weren't relieved at all.  The anti-nausea meds weren't touching this.  Another week passes and I end up at my surgeon's office.  They wanted to rule out needing a CT scan since I did have surgery on my brain and was staying so nauseated.  He determined it was nothing to do with the surgery and said I need to see a gastronologist.  I was referred immediatley and yet again, this doctor was stumped.  All the symptoms of an infection, yet no fever.  I was dehydrated at this point so he sent me to the ER to get fluids and labwork.  At the ER, they determined I was very dehydrated..2 bags of fluids and still couldn't pee..I was pretty 'dried' out to say the least.  They also said I had a urinary tract infection and put me back on anti-biotics.  I had no other symptoms of the UTI, which was odd but I did as they said and took the anti-biotics hoping I would start to feel better.  No such luck..a week later I was back in the ER for the nausea, vomitting and diarrhea.  I told them I was concerned about adrenal insufficiency and about my Cushing's, etc.  The ER doctor was not all that familiar (imagine that) but was smart enough to check my thyroid and cortisol levels, etc.  Turns out, my thyroid was low, even though I am on medication for it and my cortisol was 'normal' for a normal person but should have been higher given how sick I've been.  He called my endo doctor who had them give me a shot of a cortisteroid and give me a prescription for more.  It was a miracle..I was feeling better in just a day. It was like my body was saying 'Thank you, Lord' for giving it what it so desperatley needed.  I went to my endo's office on Monday and they ran a bunch of test.  Today, we found out that my pit gland is damaged.  Either from the tumor itself or when they removed it during the surgery.  It was damaged along the way and basically the pit gland doesn't like to be 'touched'...so now, it is not producing ACTH and I need to stay on the steroid replacement for quite a while.  While I am not happy about yet another 'bump' in the road but am so relieved to know why I got so sick and that there is something that can be done about it.  I am still a long way from being well but at least I am back to normal 'crappy' and not death-like crappy.

Taking it one day at time...

Recovery continues to be tough.  Not as bad as those first couple of weeks but I really never know from hour to hour how I am going to feel.  I never feel good but some days are bettwe than others.  It is crazy though...one minute I am doing a load of laundry and the next I am on the couch, out of breath, feeling like I have ran a marathon.  This morning, I was fine one minute and the next, I felt like my hip was broken and my legs were just aching.  I cannot wait for a day with no pain and a little energy although I know I still have a long way to go.
This disease is just so nasty.  The damage Cushing's did to my body is just mind boggling.  Besides the obvious damage you can see to my skin and hair, etc..the internal damage and even mental/emotional damage is insane.  I continue to be thankful for the ability to read others stories and know there is light at the end of this.  And I am even more thankful to God for getting me to a diagnosis and surgery...

Back to work...

Went back to work yesterday.  It was a good day.  I was tired but wasn't in any pain so that helped.  Everyone was so sweet and kept offering to do everything for me.  I could get used to this being spoiled-lol.  Seriously, I have had such an awesome support system through this.  Don't know what I'd do without my family & friends.
I even got a pretty good nights sleep last night. I still got up to pee and woke up here and there but I got some hours in..so as for Monday...it was all good.  Praying the same for today.  Thanks to God for all His mercy & grace!!

Rough night

I've said it before but it amazes me how many different parts of your body this disease affects.  The part that continues to amaze me the most is how it affects your mind.  And to think, the 'monster' that caused all this havoc is gone, it's aftermath is still as mean.  This healing process is long and it helps that I've seen glimpses of light at the end of this tunnel, some days are still so hard.  Last night was brutal.  I had to pee a gazillion times.  Not the same type of 'have to pee' as before surgery but it is obvious the damage it has done to my bladder.  If I only have to pee a 'little', I still get the urge.  And back to the 'mind' part..had crazy dreams about the disease...they seemed so real and were really too insane to even type about.  I usually never have nightmares and these were just that.  I've been home so much although I did get out a good bit last week and my mind is starting to just go a bit, I think.  My body is just so tired, so incredibly tired.  It's like the more rest I get, the more tired I am.  I am sure this post is just all over the place but that is where I am right now..all over the place.

ACTH Simulation Test

Had this test done yesterday..doc checking on my adrenal glands.  They inject you with ACTH which of course boosts your level of cortisol.  I was pretty much up all night last night.  I feel great at the moment because of the 'high' it causes but know that crash is coming tonight.  Good thing is no plans tomorrow...bad thing is my bathrooms really need to be cleaned.
In some cool news, I have had 3 people who hadn't seen me since surgery comment on how I am starting to change physically.  The moon face is slowly going away.  I can't really see it..maybe a little around the cheeks but I will admit I can feel it, especially around my middle section.  I can breathe easier and I've lost about 10 lbs.  Baby steps but so nice to have some good ones!!

Food=YUM

I don't know what it is but ever since my surgery, everything tastes so good.  Like everything I put in my mouth is just divine.  I have no opinion of what I want for each meal.  Like a peanut butter & jelly is just as good as steak.  It is wierd. 

This is so wierd!

It is so wierd how you can be feeling okay one second and the next, you feel like you are about to fall slap over.  It is like, literally, within seconds you are a different person.  I know this is all normal and a part of recovery but it can be so overwhelming.  I really just want to stay in bed all day long. God, please give me strength....

Keeping on...

I had 2 really good days..well, good for me anyways. Would probably still be 'hell' for an average person.  But, I had the energy to do some laundry and stand more than 10 minutes so it was a good couple of days.  Of course, I still napped on an off all day but still...Then, last night, it was like I caught the flu minus the puking part that normally accompanies the flu.  I was miserable all night.  Took something to try and help me sleep..worked for about 3 hours maybe and then I was up most of the night.  Just achey and feeling miserable all over.  I finally crawled out of bed around 8 and came in and got some breakfast.  That's one thing through this...my appetite has not suffered-lol.  It is 5 now and I still pretty much feel like doo-doo but it has been such a great day otherwise.  My sweet baby, well, he is 8 and not a baby but still my baby gave me the sweetest Mother's Day gifts and we've just hung around all day in our pj's.  My husband gave me theater tickets for next season and his parents brought us lunch.  He is now doing some yard work and we are still lounging.  So, really, it has been a great day in all but the physical sense. 

Cortisol up and cortisol down and the wheels on the bus...

Pain-wise, doing much better.  Extreme fatigue and just wanting to scream most of the day...about the same.  It's so odd...you know the pain is a good sign so you almost welcome it but then when you are just tired and achey and miserable all day long, you pray for it to go away.  Cushing's is enough to make a person go mentally insane.  I wish I could say that jokingly.  And if one more person asks me how I am feeling today, I just may go over the edge.  I FEEL LIKE CRAP, PEOPLE AND I WILL FOR A LONG TIME, HOW MANY TIMES CAN I SAY IT????  And I know..that is mean.  People only ask because they care and they love me. I know this but when you get asked over and over and over and you are already tired to the very core of your being..it is just almost too much to even gather up an answer.  I am not a mean person, I'm not but these days, I feel like a pit bull sometimes.  Me, a pit bull--now that is a funny image.  Talking about the girl who never screams..except at her husband-lol.

Called the doctor

I have got to get some replacement hormone help.  This pain is too much.  Doctor wanted to wait until Friday but I called his office this morning to request he call me back.  Vicodin is not touching the pain and I don't want to get addicted to narcotics while waiting on the replacement therapy...I hope he calls me back soon.  This disease is so misunderstood because people just don't know about it so talking to the staff at  the doctors office is like talking to anyone on the street.  They are like, 'He didn't do your surgery so he cannot help with complications of it."  I am screaming..it is not the surgery, it is the endocrine side of it...if I just needed to heal from the surgery, I'd be back at work already..seriously, that was a breeze.  I mean, I didn't really scream at the girl, I was very nice but I so wanted to.

Recovery.

Oh my Lord.  You try and prepare yourself for the recovery process.  You read the horror stories, you know they say it is worse than the disease itself, you know it's like a drug addict withdrawing..but still, there is no preperation.  This is awful.  I am in such pain.  We haven't started my cortisol replacement therapy yet so basically, I have 'bottomed' out cortisol-wise and my body is feeling it. 
The surgery itself was a success so far..very simple, recovered quickly from that part. I still have the stitches up my nose but all the packing is gone and I can smell/taste again.  The tumor was very visable and the consistency of toothpaste according to the surgeon.  I go next Wednesday for my follow-up with him and more details on size/pathology, etc. 
For now, I've just got to get these replacements in order so I can at least walk and function.  I know this is a beginning to an end but geez...this is rough as hell to put it nicely.  Thank goodness I can read the other stories that show it will get better eventually..just gotta press on.  Lord, please help me.

Surgery is tomorrow!

I can hardly believe it.  I am at peace and not nervous about the surgery..I just pray that find this little booger that has caused me so much havoc for so long and get it out!!

On the countdown..

Tomorrow is my last day to get everything in order before my surgery day.  I am almost done..I think, anyways.  I have to get my bag packed but I am not planning on packing much so I am not worried about that.  This is one really great thing about having this done here at home..if I do happen to forget something, someone can run home and get it for me with no problems.
Everyone keeps asking me if I am nervous.  And honestly, I'm not nervous about the surgery at all but I am at the recovery.  Nervous really isn't the word for it though..it's hard to explain.  I am not scared but it is just a wierd feeling because there is so much unknown.  I know what I've read but this disease just affects everyone so differently and you don't know what to expect really....
Even with all that said, I am so ready.
The thing that is so wierd is how many people will be waiting for me while I am in surgery.  I hate the thought of people just sitting and waiting on me.  I am so not used to being the one that needs to be taken care of and I don't know how to deal with it.  Of course, my friends and family tell me to get over it because they will be there no matter what.  LOL  And I know, it is really such a blessing to be loved but still...it's wierd for me.

Watched the surgery...

Just watched on YouTube how they do the surgery I am having next week.  It is called transphenoidal surgery.  Wow..amazing that they can do all that just by going up your nose.  And to think not too long ago, they'd have to crack your skull to do this same thing.  Medical advances are just amazing to me. 
So, I am not nervous at all..wierd but I think God's grace is just all over me.  It has to be HIM because no one else could supply this type of peace.
This weekend is going to be busy.  I've got to get my house cleaned.  I can't leave for the hospital with a dirty house..that is the lovely OC side of me. :)  I've got to get everything in order for my child for next week.  My wonderful inlaws are keeping him for the week, which is such a blessing.  They take such good care of him and I won't have to worry about him for even a second, besides missing him like crazy.  Still, I have to get all his clothes, etc ready.  Then, I need to pack for the hospital. Not really thinking I will need much so that part should be pretty easy.  Sunday, after church, I need to go up to work and get some stuff done.  It's wierd to think I will be away from work for a couple weeks.  Like going on vacation but so not a vacation-LOL.

Had all my pre-op stuff today...

Started off the day at the neuro's office where the schedule-chic gave me the run down of my insurance and had me sign all the 'okay forms' so they can go inside my head-lol.  It was pretty quick and then she sent me on my way to the hospital for an EKG and a chest X-ray and of course, labs.  Got everything done and so it's on for next Tuesday at 7:30 AM.  I have to be at the hospital at 5:30 AM...nice. Of course, I am generally awake until about that time so at least I will be good and sleepy by the time we get to the hospital.
So on a 'funny' note...the gal who attempted to do my labs was a trip.  If there is one thing Cushing's patients are used to, that is lab work but this chic took it to another level.  Let me preface by saying that I have horrid veins.  They are tiny, deep and they roll.  Very few lab folks get me on the 1st or 2nd poke and I am used to it.  I mean, it honestly doesn't phase me anymore and it doesn't hurt when they poke and prod around my arms.  Anyway, my lab lady was new.  She was funny though because she wasn't that 'nervous' type of new..she was just 'I am gonna stick this needle in your hand, your arm, your other hand and your arm again and just hope I get a vein' type.  I mean, seriously, she stuck me and stuck me..the time in my arm, I could even see there was no vein.  I was looking at her like she was insane.  I was literally her pin cushion.  She wasted no time and was just opening up needles like a mad woman.  So, she calls a nurse over to assist her.  The nurse is almost as bad..she whips my hand over and sticks me on the underside of my wrist.  I actually felt a tingle in my hand and then felt the blood coming through the vein. It wasn't painful but was such an odd feeling.  At this point, I was almost laughing thinking these ladies were just nuts but they got all the tubes filled....
So, its on.  Tumor, we are coming to get you!!

This disease cracks me up some days....

It's funny how this disease can make you actually euphoric some days.  Today, I've had lots of energy, felt 'in control' and wide awake, ready to take on the world.  How can a disease be so incredibly odd?  It ravages your body and plays tricks on your mind at the same time.  And the funniest part of it all is that I am fully aware that all this stuff I 'feel' is the disease.  Geez...it's a wonder I am not in a hospital with cushy walls..lol.
I can feel myself plunging as I type this..getting tired & achey...oh, the joy of Cushing's.
On another note, I get really tired of explaining what is wrong with me to people.  It is such a hard disease to describe and most people just don't 'get it.'  And I get that it is hard for someone to understand that I'd be excited about surgery or why having a tumor is a 'good' thing.  I mean, I totally get it is hard to understand but still, it wears me out attempting to help people understand.  And it really drives me nuts when the same people ask me all the time if I am 'feeling any better'....I want to scream, "NO!!!! and I won't until they get this thing out of me, how many times do I have to tell you that?"  Of course, I would never say that...and then, I feel guilty for feeling that way.  I know they mean no harm but it is so tough to feel so misunderstood all the time.....

How sad is it...

How sad is it that part of me is actually looking forward to surgery just for the sleep??  It has been, I guess, around 2+ years since I've slept through an entire night.  Here it is, 6:30 in the morning and I've been awake for a good bit.  I have so much to do tomorrow and I know I will just want to crash all day.  I am trying to get everything in order before surgery and it is a tad overwhelming..add that to no sleep and you have a mess.  Yep, that's me right now..a mess.

Got a surgery date!

So, the 27th it is.  I can hardly believe it.  It is wierd because you get so used to the 'come back in 2 week' or 'take this test' or yada, yada.  Once you get to the surgeon, things happen like a whirlwind.  It is awesome and overwhelming all at once.

Cramps suck.

I am one of those lucky women that has never had cramps with her period.  Cushing's is making sure that I am receiving full pay back for that.  I have the worst leg and foot cramps sometimes and they are always in the middle of the night so they wake me up from what little sleep I get to begin with.  Last night, my feet and legs cramped all night.  It was so bad that I had to 'jump' up to stretch out the muscles to get the cramps to release.  Some people call them 'charlie horses'...I call them *!@#&!!*  LOL 
In other news, my appointment with the neurosurgeon is tomorrow.  I am not nervous at all but I have a feeling he is going to want another MRI, which in and of itself is fine but just means more time.  I am tired of waiting, I want some surgery!!  Too bad I am not rich enough to offer bribes...

Burning feet and just plain tired!

Burning feet and just plain tired..that about sums how I feel right now.  Well, add that to being ill at the world for no good reason and there you have me for today.  I am going to take a sleep-aid and hit the sack.  The world will thank me for going to sleep today-LOL.

Tired of feeling ugly.

This disease affects the way you look in such a devastating way.  I've lost hair in all the places I don't want to..my head and growing it in places that no woman wants.  My face is round and fat.  All my weight is all around the middle.  I look like Humpty-Dumpty basically.  I feel so unattractive in every way you can imagine.  I am not a vein person and have never considered myself 'hot' or 'beautiful' but I was who I was.  Now, I don't even recognize myself when I look in the mirror.  If you look at pictures of me over the past 3-4 years, I look like someone else.  I ran into someone I hadn't seen in a few years the other day and it took her a second to realize who I was.  It was odd and sad and well...uugghh.
The only thing that keeps me going is knowing most of this seems to reverse during the healing process.  Most patient stories I've read are very encouraging and they all say you start to 'see' yourself in the mirror again and not to lose hope.  I've seen lots of 'after Cushing's' pictures and they give me a lot of hope!  I mean, I am not wanting to look 20 again but just to see 'me' in the reflection would be nice.

Yesterday was exhausting...

I had one of those days.  Every step was a big deal.  I was just sooooo tired.  I came home from work, ate dinner and was in bed by 8.  I actually left a load of laundry in the washing machine...for me, that says a lot as laundry is one of those things I am super-anal about.  I do laundry every day and never leave it in the washer unless I have no choice.  I know, wierdo...anyways, I just couldn't do it yesterday.  I HAD to lay down...I HAD to sleep.  It was ridiculous. 
Today was much better although I was still tired from being so tired.  Man, Cushing's sucks.

Good Appointment!!

I was nervous.  I went to my appointment thinking I was going to have 'fight' to move to the next step.  I should've known better..I should've listened to God as he continues to remind me this battle is not mine but his.  My endo comes and gets me from the exam room to his office.  I have my list of questions ready to fire and before I can even ask them, he answers all of them.  My dex test came back as 'abnormal', which in Cushing's world, is a good thing because it continues to prove the diagnosis is correct.  My body didn't suppress anything as a normal person would.  Imagine that, my body not normal-lol.  So anyways, he goes on to say they reviewed the notes/images from my MRI and think they saw something very tiny on my pit gland! woo-hoo!!  So, I was referred to a neurosurgeon and my appt is next week.  They may want another MRI to get a better view and that will be okay..I just know I am one step closer to surgery and I am so freakin' excited!  I know recovery will be a long process but just to be on the way...wow.

Important doctor's appt tomorrow...

So, tomorrow I see my endo.  I will get the results of my last labs (dex test) and then we are having a serious heart to heart.  I am telling him I want his referral to get another MRI on a 3T machine.  He will either agree or not and depending on his answer, I will decide if I stay with this endo or not.  I have a feeling he is gonna say to do another MRI w/contrast on the regular machine.  This won't be acceptable to me.  I'd rather go ahead and get the MRI on the 3T.  My insurance will cover it and so I see no reason to do the regular 'strength' MRI again when the 3T is available.  The reason I say this is because there is no 3T machine here where I live/where he practices and some doctors don't like that 'loss of control/being in charge' feeling.  I pray that he will do what is in my best interest and not his own.  We shall see.
I will say that I haven't been unhappy with this endo.  He has done everything he is supposed to do and I got a diagnosis very quickly and I like him.  My main issue is just time.  He orders a test and then I have to wait 2 weeks to get the results..order another test and wait and so on and on.  In the meantime, my health is just declining in every way imaginable.  I realize I have to be my advocate and press this as much as I can.  I know God is here and he will fight for me...he reminds me of this and I know it in my heart.  I have just got to trust. 

Frustrated

Today has been frustrating.  I was in such a brain fog this afternoon and it really got to me.  It isn't a new feeling or anything, I've experienced it for a long time.  It's really bad some days and I don't know why, but today it really, really has bothered me and made feel just 'stupid' to put it nicely.  For example, I was driving home and almost made the wrong turn.  Had my blinker on, almost fully stopped to turn and realized it was the wrong turn.  This is a road I travel all the time.  I turned off my blinker and kept going straight, fully knowing it was the next turn I needed to make..no biggie.  I am thinking the whole time, "Dummy.." and as I am thinking this, I go right past the turn I need to make.  It was like I was there physically but not mentally.  I turn around at the next road and in a few, I was home.  I know this is a simple little thing but I totally 'fogged out' twice in less than 30 seconds.  I just got really frustrated with myself because it really hit me how this disease can affect you.  Like I said, nothing new, it just seemed a little more real today and it sucked.  My gosh, we have got to find this tumor and get it out ASAP.

Exhausted and feeling odd....

I am totally exhausted today.  Like could sit here on the couch for the rest of the day kinda tired.  But, then my brain is going crazy thinking of things to do.  It's like my mind is on full-speed but the rest of my body is not in agreement.  The funny thing is my mind wins..I sit down for a few and then I get up and do something...then I give out and sit back down.  It is a viscious cycle.  I also have the major 'brain fog' that comes with Cushing's today.  I swear, it isn't enough the hell this disease does to your organs and muscles--it screws with your emotions and thoughts, too. 

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... 

Official Diagnosis

Well, I was officially diagnosed yesterday at my appt.  My 24 hour urine test showed it all.  Normal results are cortisol levels of 50 and below..mine was 298.  Crazy but I already knew.  The list of symptoms was just way too convincing....I am a textbook case they say.
So, now we have to find where the little booger of a tumor is hiding out.  I am off to vacation this week and then when I come back, I am scheduled for an MRI followed by a CT scan the following week.  It is so bitter-sweet.  Excited to be moving forward towards recovery but scared at the unknowns that come with surgery, etc. But..I have faith..God has brought me this far and I know he never promised an easy road but he did promise he'd never leave me.

A little nervous

My follow-up to my first appt is this Friday.  I will get the results of all my labs.  I am not nervous to go to the doctor or anything but nervous about the results.  I worry about things like them messing up the labs and having to start all over again.  The waiting is the hardest part, I just want to get on the road to healing.  Praying that the tests all turn out just as they should.

Sick and Tired of being Sick and Tired

I had a pretty good day yesterday in terms of pain.  I actually relaxed and was able to get a lot done around the house and then BAM..had a pain 'attack' that was just terrible.  I then proceeded to have a pity party and cried.  I was thinking, "Can I go one full day with no pain..just one??"  It has been so long since I have had a 'normal' day that I don't really know what that feels like.  It's odd, I can sort of remember doing things without being winded or hurting when I think back a few years ago but it's hard for me to really remember what a day without pain is like..I can't 'feel' it in my memory.  I have just hurt for so long now.  We so take health for granted.

3:07 AM and WIDE AWAKE

Gotta love the cortisol 'high' in the middle of the night.  You drag most of the day and then BAM..middle of the night and you can run a marathon. Okay, so not really but you are more awake at 3 AM than 10 AM..just another crazy symptom of good ole' Cushings.  Sad thing is, this is when I feel my best usually..middle of the night and of course, what can you get done at this time of night besides post to your blog??

Support Groups

Today, I joined the forum at a Cushing's website.  Looking forward to connecting with others going through this enjoyable expierience-lol. 

Bad day.

Today has been a really tough day.  I am just hurting all over, feeling short of breath and basically feeling like crap.  On top of that, I just read that after surgery, the withdrawals from the high levels of cortisol are much like the withdrawals from a heroin addict.  I have been about to puke ever since I read that.  This all seems so unfair.  I know, I know..no one ever said life was fair but still...this sucks.

Emotions....

Every day, I learn something new about this disease and about myself.  I learned yesterday from the Endocrine Society web site that OCD can be part of this disease.  For someone who has mild OCD like me, it can intensify it. Lovely.  Of course, I will admit that part of my nature is nice in some ways--keeps my house clean and organized. :)
The main thing I am realizing is how much it really affects your emotional status every.single.day.  You can deal with stuff normally one day and then the next, you are just an emotional wreck.  Things that normally just midly irriate you send you over the edge.  Things that may make you a little sad will send you into shedding tears for hours.  It blows my mind how something so tiny inside our bodies has so much control.
I think about this blog and it appears that I have se;f-diagnosed myself without any real prrof since my results aren't in yet.  But, this is just something I know.  The information on paper is pretty convincing but this goes so much deeper.  I know I have this disease and I am still trying to digest it but still, I know.

Scared and Excited

I've decided to arm myself with as much knowledge as I can about this disease.  I want to be prepared plus it is just my nature to want to know every single detail.  This can be a good thing and a horrible thing all at the same time.  Knowledge is power, I really believe that but when you are facing the reality of a disease, knowledge can be so overwhelming that it totally takes your breath away. 
I've not only been reading medical information but I've been reading other patients stories and blogs.  I've learned how the recovery process of the disease is often times more painful than the disease itself.  When you lived with the type of pain that Cushing's brings every day, your mind cannot almost not even comprehend worse pain.  I literally cried today thinking about it.  It's crazy but the pain after the surgery is a good sign so you 'want' it..isn't that just crazy?  This whole disease is just insane...from the symptoms to the recovery process.  It is truly mind-boggling.  It is scary.
Then, on the flip side, it is so incredibly exciting to read the end of the stories.  Healthy people, hair and skin healthy again...regaining their life.  Wow...I can only imagine!! 
I've read so many stories where people have fought depression through out the process.  I can relate as I've been there this past year, too.  Luckily not to the extent some have had to fight it.  It almost seems impossible to not fight it in some form given what you face.  You look in the mirror and don't even recognize yourself.  That is the oddest feeling of all to me.  So, here I am...petrified and excited all at once.

I hate the name Cushings...

Okay, so I know it is named after the doctor and not the fact that the disease makes you look 'cushy' but everytime I hear it or say it, that is exactly what comes to my mind.  "Look, there is a fat girl, she has Cushings and she IS cushy..."  Okay, okay so no one has actually ever said that to me...lol.  Anyways, the name still sucks to me.
On the medical front, I turned in my 24 hour urine sample this morning.  That was absolutely the grossest thing I've ever had to do.  Pee into a cup, transfer to a container that you must keep on ice.  The acid in the jug has the worst odor ever and then add a little pee to the mix..NICE.  I was sitting there yesterday and sort of giggling at the fact that I had a cooler of pee in my bathroom floor..I mean, really??  LOL.  The things we humans must go through to get a diagnosis.  Anyways, I go on the 26th for my results..seems like an eternity.

Here we go..

I am new to the blogging world, well, having one of my own anyways.  A time has come in my life where I need one and have for a while now.  I have been suffering physically, mentally and emotionally for 1-2 years and although I have known deep down that something was terribly wrong with me, I didn't know what it was until about a week and half ago.  Let me start from where I can tell my life really started to change.
In 2006, my son, who was then 4 was diagnosed with cancer.  As anyone can imagine, it turned my entire family upside down.  There is nothing worse than the fear of losing your child.  It turned out to be an aggressive form of cancer (PH positive ALL) and he ended up having a stem cell transplant as a result.  I am more than pleased to report he was healed by the Grace of God and an expert team of medical doctors..he is now almost 4 years post transplant/remission and doing fabulously.  He is indeed a miracle and I will be forever grateful that my family had the honor of watching a real-life miracle unfold right before our very eyes. The next couple of years...2007-2008 were years of healing as it takes a long time to heal from a transplant (immune system recovery, etc.)  My focus was 100% on my son. 
As he got better, I then had to learn how to start focusing on myself some.  This was no easy task and I ended up in counseling dealing with some emotional issues I had obviously been pushing down for a while.  The counselor was amazing and together with lots of prayer & amazing grace, I overcame it.  By the end of 2008, I was okay on an emotional sense but started to notice physical changes in myself that were just 'off.'  Weight gain with no real changes in diet/exercise and an overall tired feeling..all the time no matter what I did or didn't do.  I sort of chalked it all up to the rough years we had just came through, thinking stress had just beaten my body up.
In early 2009, I went for my regular physical check-ups and was diagnosed with PCOS (polycystic ovary syndrome) although I didn't really have many of the symptoms associated with it at the time.  Not being one to really 'argue', I just accepted it and went on a medication that was supposed to help.  The medicine did nothing but make me sick.  They told me to change the dosage, change my diet, yada yada.  I did what they said and still..nothing but sick.  It eventually got to the point where I just flat out told them I wasn't taking it anymore.  As soon as I stopped, I felt relief from the stomach issues it caused.  As 2009 progressed, tons of other symptoms started appearing and progressively got worse and worse. 
I noticed facial hair, acne, hair loss, no period, stretch marks in really odd places (like my arms), high blood pressure, tingling in my hands/feet, joint pain, extreme fatigue, rounded face,swelling of feet/ankles, hump on my upper back with pain, back pain, shortness of breath, sensitivity to cold, brittle nails, purple dots that would appear and disappear on my arms, pain everywhere almost all the time.  I could go on and on.  The list of symptoms were just odd but so very real.  Of course, as you can imagine, I think most people I would tell any one or two of these too would think I was crazy.  And I can't say that I really blame them because they ARE an odd combination.  That's when the physical battle became an emotional battle, too..I felt like I was crazy..I know my body was turning against me, there were days when I felt and still do feel like I am dying.  I would tell my husband something was wrong but he didn't understand and how could I make him when I didn't either?  This plays a toll on your marriage, especially after what we had already been through with our child.  I can see that now but at the time, didn't realize how much this disease was already affecting us both. 
This started my 'love' affair with the medical field.  I started by going to my regular doctor and explaining some of the symptoms.  I didn't go into great detail because I thought some of them were not relevant..for example, stretch marks..who goes to the doctor and says, "hey, I got some new stretch marks but I didn't have another baby!" I had never in my life heard of stretch marks being a symptom of anything other than being fat, which I am.  It is still incredibly embarassing for me to type that now..none of us want the world to know what we are hiding under clothes---even healthy people have their body secrets!!  But, if it will save just 1 person who reads this and gets help, then so be it.  The embarrasment will be worth it.
Back to the doctors visits....my first appointment I was told my purple dots were just a mystery and as long as they went away, I should not worry.  I felt pretty blown off but accepted their answer and went on.  Next visit was because my blood pressure was high.  I take it occassionally at work on one of those little machines and noticed several high readings.  Again, no big change in weight at this time and no change in diet..in fact, I had joined Weight Watchers and been eating pretty well.  It was high at the office as well and they put me on blood pressure medication.  I mentioned some of the other symptoms again and the doctor pretty much said the blood pressure was probably weight related although he could not explain why it kept going up even when I lost weight.  He dismissed the puprle mystery dots again as well.  The medicine did not lower my blood pressure so they increased the dose a few times and finally got it down some.
I was referred to a Rheumatologist to talk about my other symptoms (joint aches, etc).  He ran a gazillion tests..  The Xrays showed I have osteo-arthritis in my knee and back but all other tests were normal.  He told me I had Fibromyalgia.  I agreed I had many of the symptoms associated with the disease and accepted it.  He gave me some medicine to help me sleep and something for high pain days.  I felt relieved to have an answer although I was depressed over the fact that there was no cure for it and I'd have to live with this pain forever.  Then, as time progressed, I just felt deep down that Fibro was not what I had.  A good friend of mine suffers with this horrible disease and in my conversations with her, I knew what we had was similar in symptoms but the 'main' symptoms of Fibro, I didn't have..like certain pressure points.  Also, my long list of other wierd symptoms just kept getting worse & worse.
Next visit to regular doctor was over blood sugar.  Sugar was not high but A1C levels were starting to increase, which leads to diabetes.  They told me it was all weight-related but could not explain once again why it was getting worse even with some weight loss.  In most 'normal' people, the opposite happens.  They put me on another medicine to treat that.  I brought up most of my other symptoms and so they decided to send me for some heart testing.  I had a ultrasound  of my heart, an EKG and had to wear a heart monitor for week.  Everything came back normal.  Next, they scheduled a sleep study for early January of this year.  I never had that completed due to scheduling conflicts.
Here I found myself in 2010, still hurting, being physically miserable almost every single day, not knowing what is attacking my body.  I have found myself every single day trying to think of what could be wrong.  I'd hear a commerical about some ailment and look it up, just to see if my symptoms matched.  They never did so I never pursued any of them. 
It was now time for my annual 'womanly' check-up and so I made my appointment and went in about a week and half ago.  I normally never discuss 'regular' health-type issues with my mid-wife but on this particular day, when she asked casually, "How have you been..", I opened up the flood gates and told her just how awful this past year, year and a half  has been for me.  She was sort of blown away by the list of symptoms I gave her and we kept talking as she started to physically examine me.  Since she had not seen me in a year, she told me how much different I looked to her physically...from my face to my hair to my body in general.  I told her I had noticed myself physically changing and that I didn't even recognize myself in the mirror anymore.  She told me she thought I had symptoms of Cushing's.  She left the room to talk to the OBGYN that was on staff that day and without telling him what she suspected, he told her he thought I had Cushing's and to refer me to an Endocrinologist.  She came back in the room and told me that and I was like, 'okay??'  I had heard the term before but had no idea what it was.  She printed off a little info for me and told me to see the Endo doctor as soon as I could. 
I went and sat in a restaurant and looked over what she had printed out. I was blown away that the list of symptoms, my incredibly odd list of symtoms was all listed there.  It was like she had typed up this document based on what I had just told her.  Then, I read that if undiagnosed, you could die.  I then proceeded to freak out.  My feeling that I was dying on some days was pretty 'right on'..that is what was happening to me.  Luckily, I believe in an all mighty healing God and have seen those powers up close and personal.  I don't believe in coicidences and I know I was at the right doctors appt at the right time because of His will for my life.  I won't lie or pretend I am not scared or lose sight of my faith because I am human and I do.  But I always have that safe haven to return to.
I had my first endo appt on Monday.  They ordered tons of bloodwork..ten tubes to be exact and a 24 hr urine test.  So, here we go.  My prayer is the tests reveal what they should and I can get on the path to healing.