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.