I guess I am way overdue for an update.  So, I am more than 3 years post surgery to remove a teeny tiny tumor that basically ruined my life...well not my entire life but the physical part of it.  I wish I could be more cheerful but I am so tired of still hurting.  I really thought by now that my life would be semi-normal.  Don't get me wrong, I've lost tons of weight, no longer have the 'moon' face or hump on my back, my hair and skin are back to normal but I hurt all the time.  It is so sad to me that I honestly cannot recall the last time I felt good.  In reality, it has been about 5 years since I started to get sick.  It took 2 to get diagnosed.  My physician tells me that is the problem...going undiagnosed so long gave Cushing's ample opportunity to have a party inside my body causing damage that can't be 'fixed.'  It makes me angry because I begged and pleaded with doctors and specialists saying, "Something is wrong, I am not just fat!" It took 2 years and a midwife to diagnose me.  A midwife!  Not even a doctor, a lovely lady who was just doing my annual pap smear who knew me and knew I didn't look like myself and then took the time to listen to me.  God bless her. 
Now that my rant is over, I will tell you medically-speaking, my labs are good with the exception of my thyroid. We are still playing with the dosage of my thyroid medication because we haven't found the magic dosage just yet.  It keeps being increased and I am hoping we find my number soon.  No sign of relapse, which I am thankful for.  As much as I hurt, it is nothing compared to when I had Cushing's disease.  I will say I do miss one thing with Cushing's...the highs. I could clean my house in an hour..haha!  Of course the low after the high was hell but still...

So..wow. It has been a long time since I posted.  I guess I have good news and bad news for those wanting to know about Life post Cushing's.  The good news first...I am finally really looking better.  As in, I get daily compliments on how I look like the 'old' me.  For someone who deals with Cushings, that may just be the ultimate compliment.  It is especially nice when I run into someone I've known a long time that never knew I was that sick, for them to recognize me is an amazing feeling.  To someone who has never dealt with Cushing's...that sounds crazy but when my disease was at its peak, I'd see people I've known my entire life and it would take them a minute to recognize me and once they did, give me a look of horror like I had been in some horrid accident.  Looking at pictures from that time, I can't say I blame them because I didn't really recognize myself either.  So, my hair is now back fully and growing like crazy, my skin is clear and my face is thin.  I've lost more than 50 lbs and on the outside, I am well on my way to feeling like a normal woman again.  Of course, Cushings left many, many physical scars that I can do nothing about and no amount of weight lost will change.  So, unless I win the lottery and can hire a world-renowned plastic surgeon, I am stuck with that part of me.  The bright side is clothes can cover all that.
The bad news?  Well, I still have pain every single day.  I find that I cry when I stop & really think about it.  I cry because at this point, I cannot remember the last time I had a day where no pain existed.  I mean, I know they did.  I know my youth and young adult life was filled with energy and abundant pain-free days, yet I cannot recall what that felt like.  My body aches relentlessly, some days all over and some days one part more than the other...it is very strange.  When I compare to 2 years ago, I have much more energy than I did then so I know I am making progress, however, it is slow.  I am 34 years old and I feel 70 most days.  It makes me angry to be honest...I feel cheated on the prime years of my life.  I have a 10 yr old son and I feel like he has been cheated, too...a Mom who just can't go like the other Moms.  Thankfully, he is an old soul and is content doing just whatever....he is such a joy.  As for the pain, I've mentioned it to my doctor and she assures me it is normal.  I went so long without a diagnosis and my body was damaged..add that to extra Cortisol it was getting then it all suddenly went away, leaving me with the damage.  She compares it to a drug addict going through withdrawals.  She said she has seen her patients have this type of discomfort for years but says it does get better.  As much as I want to believe her (everything else she has said has come true)...a part of me fears greatly that I will have to deal with discomfort forever.
The hardest part for those around me is the fact that I do look so much better than 2 years, 1 year ago.  They see this drastic change in my phsyical appearance and so they assume I am healed, all better.  The ones that I have shared my ongoing issues with have been very supportive but I don't want to burden anyone so I mostly keep it to myself. 
I have to keep positive though and look back to where I was and where I am...there IS progress so maybe in 2 more years, I can write that my insides match my outside.  I will keep praying for that and for some sort of preventative medicine or routine test that would catch this nasty disease early.  It breaks my heart for everyone touched by Cushings...

Less than a month...

and if all goes well, I will be off steroids for the first time in a long time.  I've been weaning since November and since then have lost about 30 lbs so I am beyond stoked at the hope of being done with them forever.  It is wierd, Cushing's is caused by your body producing way too much of the stuff, you get rid of the tumor causing that and then your body decides to stop making it all together.  At least that is what my body did.  Lab work is showing my body is making it, hence the wean but I will admit the nightmare of last Summer haunts me and makes me fear coming off it again.  Last Summer, my 'old' doctor stopped me cold turkey and I went into major withdrawals..spent 3 weekends in the ER and much longer on my couch. It was miserable.  Anyhow, I feel I am in good hands now and she has been slow with the wean but still, I am a little scared. 
In other news, I am feeling better little by little.  I still have crappy days and aches and pains that 'normal' people don't contend with but I can see progress.  Emotionally, I still have crappy days as well.  I have some serious self-esteem issues because of the weight & damage Cushing's has done to my body.  I get so angry when I think that even if I lose all the weight, some of the damage is there forever.  Logically, I know there is no reason to be angry...no one to be angry at and really, being angry changes nothing but still, I'd be lying if I said I wasn't sometimes.  Maybe that will change in time..I hope so.

Let's see where this road leads...

mm..well, I think I am still on the right path.  I am hesitant to get too excited because the road has been and really, still is long.  I've hit so many bumps that I am sick just from the ride!  Anyhow, I think I posted that I changed doctors back in November. I am pretty convinced that was one of the best decisions I have ever made.  It confirms the old 'go with your gut' type-thing.  I knew I had to.  It sucks because the new office is 2 hours away and I have to be there at 8:00 AM for labs and then an afternoon appointment.  It makes for a long day and more time away from work than I care to have to take.  Nonetheless, it is worth it.  My new doctor knows her stuff and everything she has said to me or done has proven it.  I am losing weight pretty consistently, which is soooo nice after gaining constantly for a few years.  I thought I was seriously going to bust at the seams if I gained any more but anybody with Cushings or who have been on steroids knows that weight is a losing battle.  You can eat nothing and gain 2 lbs.  And its not just the weight gain, you swell and hurt....blech.  Anyways, I am off track.  I have lost about 25 lbs so far but the very best part is that I am starting to feel better.  I have energy again..not tons and not much at all compared to the average woman my age but compared to a year ago..wow, it is amazing.  And people tell me every day that I am looking like my old self again..that is worth a million bucks everytime I hear that.  It's hard to explain to someone who has never expierienced it but when you look in the mirror and don't recognize the reflection, it does something to you mentally. It's more than depressing, it is downright sad and it hurts.  And then you wonder if that's what you see, what does everyone else see?  A big, fat blob with thinning hair and bad skin....that's what I saw.  While I don't see what I want to see just yet, I don't see the blob anymore.  My hair is pretty much back to normal, skin is normal..still fat but not as..haha. 
Medically speaking--still on the steroid.  I go at the end of this month for lab work to see if I can wean more or need to sit still...I am sure hoping for more weaning.  I cannot wait to be off for good.
So, I guess my status for now is just trucking along...but looking forward to the end of this road!

Making a little progress!

I had my check-up yesterday.  Down 17 lbs!  Can we say woo-hoo?  So, it appears the steroid-wean is going well.  I am now at 10mg once per day..a long way since November.  My cortisol level is still a tad on the low side so we are gonna stay here & cruise for a little longer.  The doctor is optimistic that my body is recovering and hopefully in a couple of months, we can wean a little more.  As long as I am headed that way, I am content.  When everything in your body has taken a turn for the worse for several years, any step the other way is more than welcomed!  Baby steps but steps nonetheless.
I still have days where I struggle physically and that leads to a mental struggle.  My mind tells me I can do a lot more than my body is quite ready for and that is frustrating.  My doctor tells me to be patient and just move a little more each day.  She & I both are excited that the swimming pools will be ready soon because that will be a great form of exercise for me.  Recovering from Cushing's is sort of a viscious cycle....you need to exercise to get stronger, lose weight but your body is so damaged from it, that you are limited to what types of exercise you can do.  You eventually can do more & more but it takes much longer to get there.  I see people that I know could do things if they just wanted to and to be honest, it frustrates me.  Not so much mad at them but I think back to when I was healthy and could have done so much more and I get ill at myself.  Not that it would've mattered to much since Cushing's was lurking but still...oh well, I guess there is really no sense in the 'what could have been' game.
While at the doctor, she was telling me about my tumor and that she got the sample of it from the hospital I had my surgery at..she was telling me how tiny it was.  They say the pit gland is the size of a pea and this tumor was on that and they say it was teeny-tiny.  That just blows me away....something so incredibly small caused such enormous damage to my body.  Cushing's affected almost all my internal systems, my muscles, my skin, my hair, my joints...how I slept (or didn't sleep)....my energy....my appetite...my weight.....and the list goes on and on.  Insane, really.
Anyhow, sorry I got off on one of my rambling sessions.  The doctor was pleased and I will admit it was so great hearing positive things instead of more reports of damage.  That little light at the end of the tunnel is getting a little brighter.

Still truckin' along...

I cannot believe it has been so long since I last posted. Let's see...a good bit has happened.  I ended up switching Endo docs because, well, to put it nicely, I just wasn't getting the care I deserve as a patient.  I am now going to a clinic that specializes in pit gland disorders such as Cushing's.  I started in November and in my first visit, felt like I got more information that I had in a year with my old doctor.  I was told that the dosage of steroids I had been on for the past several months was way too high for my body size and she was not surprised one bit that I wasn't feeling any relief from the Cushing's symptoms.  She said she had no way to confirm I hadn't relapsed or that the tumor wasn't fully removed in the first place at that point but had strong suspicions that my lack of freedom from symptoms was steroid-related.  So, we started a wean.  Luckily, my body has reacted well thus far.  Don't get me wrong, I still feel the aches and pains that come along with coming off steroids but I haven't been sick-sick.  I am now on 10mg per day and hoping to keep on the downhill slope.  I am still being tested regularly.
I did have a major set back in December.  I ruptured 2 discs in my back and had to have surgery 2 days before Christmas.  Then, shortly after surgery, learned they accidentally left a piece of the surgical tube in my back and had to have surgery yet again.  Happy Holidays, huh? lol
So...that combined with the weaning process has not been fun but I think..maybe...just maybe I am starting to see a small light at the end of this tunnel I've been in for years now.  I am hopeful anyways.

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.