Feelin' Cushy

I'm trying to stay positive and not punch people when they say I look good after the last surgery but right now I'm feeling very "cushy." I guess that means that I'm cycling my moods very quickly, one minute I want to cry and the other punch someone or something. It's very frustrating because people want me to say I feel good because it makes them feel better and like this last surgery is progress but right now I feel like the exorcist. Granted I haven't caught my head flying around in circles but I'm having a hard time keeping it together when all these people say things to me like "you look good so you must be feeling better." And I know they mean well but that's not how I feel. That tumor in my chest has nothing to do with Cushing's and probably has only made me feel worse right now instead of better because of the stress to my body. But no one wants to hear that I feel like crap or just want to cry...and I can't say I want to either but it's how I feel. And then I feel worse because I'm frustratedd with people saying things that aren't true and trying not to disagree too much because I don't need to piss people off.

I feel like there is a race going on insude my body with all this cortisol. Like every organ is on overdrive and my heart is beating like a hummingbird. Not exactly a comfortable and relaxing feeling for someone who "looks good." Umm, hello people I've gained 60 pounds and I don't look or feel good so stop trying to be polite. I know you mean well but it's not helping me to lie to my face...just say nothing because then at least I know it's real. That and the fact you'll stop pushing your feelings and what you wish upon me...I'm not you and this is hell. Do you honestly think I like feeling like this...all tight and wound up like a ball of string about to break? Please I can't wait till the day you can all say things and I know they are true. But until then just call and tell me stories about you or stop and tell me something interesting that happened to you...the last thing I want to be focused on is me.

Okay, off to get some air...

Still Recuperating A Week Later

I'm still recovering a week after my surgery. I guess part of the long healing is because of the Cush and the other I have to keep reminding myself is part of the fact I had major surgery. I go in Tuesday to get my stiches out. Nice. Today the butterfly strips came off the other 4 or 5 wounds. They look gross and are slightly infected. They leave nice ooze marks on all my shirts. I still need the pain medication every 4 hours and my tummy is still a mess, probably from the drugs. All week I have been fighting a fever but I'm sure I will kick it soon. At least I hope so. Maybe tomorrow I can make it out for a short walk. My right lung is a bit tender and doesn't hold that much air so I'm working on the exercises with it so I can walk "normally" again soon. It almost makes me gasp for air since it hates when I go to take in a deep breath.

Regardless, I can't wait untill my next surgery even though I'm sure I have about had it with pain right now. But at least then I will definately be on the road to recovery and I know I can beat the Cush! This disease is very depressing but I know that soon it will all be over and I will have won. I only hope that I can find a way to help others have the strength and courage to not give up and beat it too. Right now I'm thinking that may include a job or career change but since that's about a year away I have a while to think about things.

Well anyway, I'm looking at this Memorial Day as a way of saying goodbye to the Cush and as the starting point for my final battle. I know it sounds weird and even selfish considering that's not really what the holiday is for but I'm looking at it that way. I need to have something to get me through this last leg of the race because emotionally right now I'm still having some anxiety issues and need to keep the hope up. So this is to celebrate the impending death of the Cush for me...not quite sure how I plan to do it and maybe it will be just a mental note for myself but it will be done.

Well, I hope you all have a good weekend!

First Morning Home

It;'s my first morning home since surgery and boy do I feel like crap. The nausea and other stomach issues persist and I'm in so much pain I could puke other than the fact my lung still spasms and then I would choke on it. Nice huh?

Well at least one surgery is down and I have one left to go. The good news is that I'll likely have it in the next couple of weeks (probaby more like a month) and then I can really focus on getting better. I definately have Cushing's since we are the only people who could eat a liquid diet of broth and water for five days and still gain weight. I gained a couple of more pounds in the hospital. Lovely! I think I'm up 60 pounds now but I'm trying not to think about it.

I looked at some of my incisions last night - I have about 4 or 5 of them across my back and they are about 1 -2 inches long. Man do they hurt. I have seen the one for my chest tube yet. I get to look at that one today when I pry off the bandages to shower. I don't think that will be a happy occurance. Hopefully they heal well but right now they look yucky and hurt.

Mom is making breakfast so I can try to eat and take more pain pills. Good thing she's here or I don't know what I'd do. Probably lay here and moan about being sick to my tummy. And I know she won't kill me like my stay in the hospital tried too...more on that later twhen I have energy and feel a bit better.

Hope you're still reading...

As If Major Surgery Wasn't Enough...

The surgeons office called and they said they lost my films from my MRI and CAT scan and that if they didn't find them I won't get my surgery...can you say heart attack? I would have to wait yet another three weeks if they didn't find them. So in the meantime I'm calling my family to tell them to stop driving incase it is cancelled. They just called back again and told me they found them and now they don't know if they have the clotting factor for my clotting disorder so I won't bleed to death on the table...I'm still waiting for them to call. Luckily I caught my family only 30 minutes into the trip and told them to stop...we are all waiting...god, as if the stress of getting sliced open tomorrow wasn't enough they are trying to get me to have a heart attack with all this stress. And my blood pressure is supposed to be normal for tomorrow? Yeah right with all this. I think the doctor is just trying to get out of the surgery because he wants to go golfing tomorrow. My heart is racing and I'm shaking so bad I can't even make the bed or concerntrate. These sentences are probably making me sound like a crazy woman but I'm about ready to lose what composure I had. Anyway, providing they find my tests and the clotting factor I have to check in tomorrow...Good news...they have everything they need.

God, I'm about to fall apart. This better be the last hurdle for this surgery or I won't be making it to the hospital in one piece...more later as I'm sure I won't be sleeping tonight...

It's Coming...

My surgery date is coming and now I'm spinning out of control. My head has a million thoughts and I can't keep them all straight. I start doing one thing but get distracted by another thought and move on without finishing anything. I have a list of "to dos" a mile long and now it's a matter of days till I get what I have been waiting for over ten months. I can't even sleep since all these thoughts and lists of things keep waking me up. Not to mention the phone and all my friends wanting to know what the heck is going on and stuff...that and my stomach is doing flips at the thought of a liquid diet for a few days. And then the thoughts that I will have two surgeries that most people never even think about muchless have...I guess that's what you get with two rare diseases running around in your body. How'd I get so lucky?

Oh, my head is spinning and I need to stop thinking for a few minutes. I'm going to go lie down...talk to you all later...

Another Day...I Get Surgery!!!

I get my first surgery on Friday, May 20, 2005! Yippee...although I'm not sure I should be so happy since they will be doing the thoracotomy where they slice you in half. I'll be cut from rib to rib around the right side of my body. I guess on the bright side I get to take the first step to get better and I get my very own morphine pump for a few weeks I'm told. I'll be in the hospital for about a week maybe longer...yikes. I'm not sure how I should feel, part of me is excited the other part is scared shitless...

Only time will tell how I'll feel in the end...off to mentally prepare...

Another Day Another Disappointment?

Today I have yet another doctors appointment and hopefully not another disappointment but everytime I go there seems to be more. Like last time I thought I would get a date since we know what is wrong with me and all I got was more bad news. I can't say I am overly happy with this surgeon since he should have called me last week after talking to the neurosurgeon to book and appointment but never did and went away for the weekend early instead of calling me...I had to call and book my appointment today based on the call with the neuro. I don't get it, why can't these docs do their jobs?

Okay my couch is calling since I have had a migraine for four days now...more later...

Belly Dancing

It started last night this weird dance in my belly. It turns and flops and twists and doing some dance which hasn't quite made it to the hip hop scene. Today I meet with my neurosurgeon and since the rest of my docs have reported to me that I'll have surgery. I am assuming that is what we are going to talk about. And while relief is present I am also becoming scared of the surgery. I've never had surgery before so diving in head first (literally) is a bit much for me to handle. I wonder what he will say. Part of me is still scared he is going to say we aren't going to fix you and that I'll have to live my life this way, with my belly dancing but not getting any skinnier.

Okay, this is overwhelming and people keep breaking my train of thought so you'll just have to wait for more...

Wash, Rinse & Repeat

I'm waiting again for the doctors. The neurosurgeon called and would like to see me...please see blog on "the doctor will see you now" to know how I feel about that subject! Last night I spoke with the thoracic surgeon who is not that nice and started reading me the radiology report instead of treating me like a patient. Just because I'm smarter than the average patient doesn't mean that I want a radiology report read to me word for word! I called my primary care to see what she can do to help me get through this mess. I need someone to act on my behalf since they all seem to want me to do all the work...umm, do they know who is the sick one here?

Okay, stomach is churning and I'm still waiting....off to try to make my room stop spinning!

Doctor Wars

So Friday I heard from my endo and it appears all my blood work was whacked enough to warrent surgery! Yippee! But she said I sounded kinda down so I explained that I shouldn't have to be fighting with all these docs to get fixed and see what should be fixed first. She agreed and was calling the surgeons today to get things rolling. She thought that I would hear about a surgery date today but no luck. They probably are still fighting over who should slice me first. And while it is getting on my nerves, I am also glad I am taking myself out of the doctor wars and will let them decide what happens.

The good news is that things should move fairly fast. The bad news is my blood work makes me appear, chemically speaking, like a pregnant menopausal woman who is over-producing growth hormones and becoming a giant. Hot, I know! But at least they have me figured out now and life can move on. I just wish it was going slightly faster even though as more days go by my freaked out and scared factors continue to increase.

Doctors are great people but their egos sometimes make the patient feel like they aren't as important as the docs...hello, they wouldn't have any job if it was't because I have the fortune of having two rare diseases. That and they are already talking about writing me up for a medical journal article. Which is great in the sense it will help others docs treat patients like me but right now I just wish they would schedule me a surgery date. That and who would think that a neurosurgeon and a thoracic surgeon would have to fight over who gets me first. I guess that's why my endo got out of the academic setting and now wants to do clinical work...more focus on the patient who actually needs the help than on the egos.

All I want is for them to stop, talk like humans, and fix me. It's been nine and a half months and still I'm waiting for surgery. I think it's worse than an overdue baby...because you know eventually they'll take it out soon. With me they could leave me in this cycle for months more. Not really a reality but who knows, it could turn into one while they sort the egos out. I do have to say my neurosurgeon does seem to have me in mind rather than just the medical publications he can get out of me. Maybe I should arrange a conference call like I do when I work with docs in my job so we can all get on the same page and get things moving.

Oh well, let's hope the egos go home tonight and stay there so that tomorrow the doctors call me with a date!