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...