Battling Cushing's Disease

[honugirl]

I really need some support. I've been battling with Cushing's Disease for a long time now. I think I've had it all my life, but the symptoms really started coming on fast and furious a couple of years ago.

They found a tumor on my pituitary gland and we removed it about 5 weeks ago in hopes that the Cushing's Disease would be cured.

As more and more blood work comes in, we're starting to realize that I'm probably not cured.

There's either more tumor in the pituitary gland that we couldn't find on the MRI (only takes a tumor as small as 1/2 mm, yes, that's millimeter, to cause the disease), it's regrowing, there's tumor elsewhere in my body that we haven't found yet, or I have what's called hyperplasia, which is where tumor is spread throughout the gland. They didn't carve up the gland the first time to try and preserve as much function of the body's master gland as they could.

If I'm not cured, I'm either going to have to endure another brain surgery (which in all honesty wasn't as bad as I thought it would be, but it still kind of sucked) or they're going to have to remove my adrenal glands, which are the glands that produce all your stress hormones, in order to stop the vicious cycle that is destroying my body.

No one around me understands what I'm going through. They figured that the tumor's out, life is good. No more worries! It doesn't work that way with this disease... Each day is a battle. I'm exhausted. I'm emotionally and physically spent. I don't know if I can make it through having to test again to reprove my Cushing's and then make a life altering decision.

I just wanted my life back. I wanted to go to hockey camp with everyone else this summer and not feel like a freak because I couldn't do stuff. I wanted to be able to go to school and succeed, get a job, be productive. I wanted to be able to go to WDW and not have to use an ECV. I'm going to have to watch all my dreams slip away again.

 

[Regina]

I am so sorry that the surgery didn't have the results you were hoping for. My heart is breaking hearing how discouraged you are.

Try not to be concerned over how others think you should be feeling. It only adds to your already heavy burden. You know you're sick and have nothing to prove to anyone.

It looks as if you've been through quite a lot already. You have every right to feel cheated and angry knowing that this disease is still going to impact your future. If venting here helps, go for it. That's what this board is all about.

I'll remember you in my prayers and hoping that the next step results in you being cured.

 

[Nala56]

I was so hoping your surgery would be a success and your life would be much better. You are so brave, I will still pray for a complete recovery. You are right most people don't understand chronic illness and don't understand the full impact this has on your life. Don't give up and never lose hope.

 

[honugirl]

I am so sorry that the surgery didn't have the results you were hoping for. My heart is breaking hearing how discouraged you are.

Thanks for the support.

It was such a long journey to get a diagnosis the first time, close to 2 years, that I'm really scared I'm going to be in the same position again.

Try not to be concerned over how others think you should be feeling. It only adds to your already heavy burden. You know you're sick and have nothing to prove to anyone.

You're so right. Thanks for that.

It looks as if you've been through quite a lot already. You have every right to feel cheated and angry knowing that this disease is still going to impact your future. If venting here helps, go for it. That's what this board is all about.

I'll remember you in my prayers and hoping that the next step results in you being cured.

Thanks for the prayers.

I'll be venting quite a bit for the next little bit I think. I had so many plans. I was going to be back on the ice playing and refereeing hockey in September. I was going to finally go to WDW again without the use of an ECV. I was finally going to get back in the gym and start training for a marathon or a half-marathon. But most of all, I so wanted to go back to school in the fall and finally finish my degree. I wanted that so badly. Now if I'm lucky, I might get to go a year from now.

Mentally it just wears you down. I miss my friends because I just can't get out and do stuff like I used to. It's very isolating.

I was so hoping your surgery would be a success and your life would be much better. You are so brave, I will still pray for a complete recovery. You are right most people don't understand chronic illness and don't understand the full impact this has on your life. Don't give up and never lose hope.

Thanks Nala! I'll keep fighting. And I promise not to lose hope. I know there's a cure out there. It may not be exactly what I wanted or how I envisioned it, but we'll get there. I just hope that the interim testing to prove that it's back goes by fast.

 

[KPeveler]

hey there - i'm going to PM my sister's info to you. she has cyclical cushings (we think) and sees a specialist in boston - she is on ALL KINDS of boards and helps with fundraisers and such... she may have some great support info for you.

i have a different disease that is also eating my ability to walk (more stamina than anything), and causing all kinds of other health problems.

also, check out butyoudontlooksick.com/boards

there are some other cushies on there, and all of us understand the battles of invisible illness...

many hugs and hope you feel better!

 

[breezy1077]

Still praying for a complete healing chickie! "Believe it til you see it" is my motto.

*Also threw in a prayer for strength and grace for ya*

 

[honugirl]

hey there - i'm going to PM my sister's info to you. she has cyclical cushings (we think) and sees a specialist in boston - she is on ALL KINDS of boards and helps with fundraisers and such... she may have some great support info for you.

i have a different disease that is also eating my ability to walk (more stamina than anything), and causing all kinds of other health problems.

also, check out butyoudontlooksick.com/boards

there are some other cushies on there, and all of us understand the battles of invisible illness...

many hugs and hope you feel better!

Thank you! I will send her a message. It's nice to get in contact with others with the same issues that you face. I'll check out that board too. Many hugs to you too and to everyone out there facing health battles.

Still praying for a complete healing chickie! "Believe it til you see it" is my motto.

*Also threw in a prayer for strength and grace for ya*

Thanks Breezy! I think I'll add that motto to my list. It's a good one. Still operating on the Failure is not an Option premise.

I met with one of my other endos today (yeah, I've got a fleet of doctors) and he looked at my results too and said they don't look good, so that's 2 that have said the same thing.... But we'll keep hoping that it comes out OK.

 

[breezy1077]

Thanks Breezy! I think I'll add that motto to my list. It's a good one. Still operating on the Failure is not an Option premise.

I met with one of my other endos today (yeah, I've got a fleet of doctors) and he looked at my results too and said they don't look good, so that's 2 that have said the same thing.... But we'll keep hoping that it comes out OK.

BTW, don't repeat "Failure is not an option" as a mantra. The brain may not pick up on the negative of "is not" and just hears, "failure is an option". Try to focus on something positive instead like, "Success is....". Sorry, I don't even know if that's what your doing, just my little two cents . You know I luv ya chickie!

 

[honugirl]

BTW, don't repeat "Failure is not an option" as a mantra. The brain may not pick up on the negative of "is not" and just hears, "failure is an option". Try to focus on something positive instead like, "Success is....". Sorry, I don't even know if that's what your doing, just my little two cents . You know I luv ya chickie!

Thanks Breezy! I'll try that.

I luv ya too!!!!!!

 

[honugirl]

Thought I'd give an update. Got the bad news the other day that I have to resume testing to see if the Cushing's is back. I'm almost 100% positive it is. I've been off my replacement steroids for 5 days now and feel exactly as I did pre-surgery. I keep getting repeated infections, which are totally draining me. Now I'm fighting a cold and dealing with a sinus infection.

I was pretty much completely demoralized today. I had to bring the garbage cans back in from the street. I barely made it down the driveway and on the way back I had to stop and rest 3 times. I used to be a high level hockey official, now I can barely walk down the driveway.

In between trying to keep the house running while my parents are away, I'm trying to deal with getting blood draws done and sorting out which lab they've been sent to and if they made it there and what the results are. It's exhausting.

I'm just tired of this stupid disease. I'm tired of being tired. I want to get back to "living" my life.

On top of it all, I doubt I'm going to be able to go to WDW in September like I wanted to which just bums me out even more. It's the one happy place I have where I can do what everyone else can.

 

[MinnyGranny62]

I am so sorry that you have to go through this. I will pray that you will be able to cope with this and for a full recovery. God Bless you. Shirley

 

[honugirl]

I am so sorry that you have to go through this. I will pray that you will be able to cope with this and for a full recovery. God Bless you. Shirley

Thanks!

I just talked to my endo. So we're back in testing full swing. Fun stuff.

I have to go get my IGF-1 drawn tomorrow to see if I might need to do the Growth Hormone stim test. I may be GH deficient. Or if I'm not, I seem to be headed that way.

At least I finally got some ativan for the anxiety when it gets really bad, which is nice.

I'm not sure if this is good or bad. He told me I don't need an adrenal scan because he says we know my Cushing's is primarily based in my pituitary gland. Well, my last scan according to the radiologist didn't show anything lighting up, so that might mean the tumor is itty bitty and won't be able to be removed without destroying my pit gland. Great.

I couldn't have picked a better disease? I mean really? Something somewhat treatable and easier to diagnose???????

 

[MinnyGranny62]

I think of you often and will continue to keep you in my prayers. Shirley

 

[minniebeth]

Bumping this up and wondering how you are doing Honugirl, I read your posts and keep you in my thoughts and prayers!