Violent Illness

I have been violently ill for the past 48 hours and can't seem to keep anything in me. I'm not sure if it's the new meds, stress or all of the above. I am beginning to wonder if I need to go to the hospital. My head is pounding and the rest of me feelings like someones' punching bag. There are new bruises on my tummy from cramping and wretching.

UGH!

Feeling of Violation and Old Journal Entries...

So I can't seem to recover from feelings of violation. They are feelings similar to that of a date rape victim. I trusted this doctor who did my surgery and he promised me he fixed me and was a 100 percent sure he got it all. He told me there was no way he could have not gotten it as he did a "million dollar" job on me (just last week). Yet I keep getting more and more evidence to the contrary...even the pathologist agrees and said they only got the sample of skin and blood from my nose! I’m getting all hospital reports as additional evidence.

I feel so dumb for trusting him. And then I feel so angry. I'm just so damn tired of fighting this thing and everyone that touches this disease. It is bad enough I have to fight the disease but having to fight the medical community on top of it all…it is a bit much! Luckily and I hate to say this I finally found a doc who knows what she is doing. She said the neurosurgeon was very upset that she would even question his ability in the surgery and the results. He’s not sending her the medical files on me. He’s a coward because he can’t even call his patient and explain or apologize or suck it up and admit he screwed up. Maybe he has something to hide? Well not for long because I will take this as far as I can to make sure I get answers and if someone has to pay...they will. I'll make it my mission to make sure that another patient doesn't have to go through the mental and emotional abuse that I have suffered. Not to mention additional physical problems caused by prolonging my disease and the surgical complications. He told me he was 100 percent sure I was "cured." He told my mother! HE LIED! I wish I would have taped him. I think I will invest in a tape recorder so I can catch all these docs on tape.

I understand mistakes and tend to be very forgiving since I have made many of my own mistakes in life. We all have and finally I’m mature enough to admit them. But to hide something this major, to lie about it and let a patient continue to get worse because you can not acknowledge a mistake is unforgivable. Someone will pay. No patient should have their lives so completely violated. I know I am not the only one but I sure as hell won't let them forget me.

I was reading my journal entries from when I stayed in the hospital each time. (I keep a personal journal as well as this since so thoughts aren't meant for everyone in the world.) Anyway, I knew four days after surgery that I would need a second one and that something was wrong...I wrote it! I knew all along something was drastically wrong with me yet no one would do the tests I wanted. And they even went so far as to have me do a psych evaluation....which I passed with flying colors! I think they knew which is why they wouldn't do the tests to confirm or deny my suspicions. They knew right then. They knew as I lay there almost going into a sodium induced coma! They knew as I cried in pain and stayed awake at night because I was so ill and wired from what I suspect was cortisol.

I have notes from all the docs in my journal...I know who they are and what they did and they will pay. I will not let another Cushing's patient walk into their office and be treated the way I was or any patient for that matter.

With that said I am planning to enroll in college again part-time while I am still on disability. I'll only be able to take a class at a time but I need to do something. Granted I hope my medical condition lasts long enough for me to do this but I need to help others with rare diseases. I need to help them win the battles that we all go through, even if we only win them in our hearts and minds. Anyway, I'm hoping to go back for social work or psychology so that I can take my communications and health background to help others like me. To give something back, something positive, from all this ugliness.

Something good has to come of all this since you have to do your best in life and I refuse to be positioned as the "bad guy" or as someone who let this stay a negative influence on their life. If I can take this horrible experience and what I have learned to help others; than I will have achieved something in my life.

And they better watch out for the day I'm better...because I do plan to fight like hell! People will regret their actions and others will hopefully not have to struggle through them. They think I am a fighter when I am sick; just wait till I have the health and energy to back myself!

Okay, off to relax a bit…and hopefully sleep which once again is not easy to come by.

PS - I do still believe there are some good docs out there...just too few who are concerned about people with rare diseases. And most that are interested in the rare diseases are in the labs trying to find genetic clues and treatments. I have worked with some of the most amazing medical professionals in my career and they deserve the credit for doing a great job.

More News Everyday

Everyday I get more news that makes me see some people just can't do their jobs and are cowards about admitting it. I got even more news last night and more today that are imcriminating. Thank god I don't name names here or I could get slander but I figure the world will find out soon if it amounts to enough. I am a public relations and media specialist and I will use it to my advantage if I have too!

Besides that I am a bit ill from dropping meds and adding new ones. They are killing my stomach...but then again that could be stress related to the latest news.

Good news, the new doc has already called me and I just saw her a day or two ago...now that's what I call action oriented!

Okay, off to chill...

As if...

It's as if I never had surgery. That's what today's visit with the endocrinologist told me. She got the medical reports from all my physicians and the pathology lab who conducted my biopsy and it's conclusive that they didn't remove the tumor at all. Gee, I wonder if that's why I still have Cushing's?!

Anyway, apparently you develop a skin lesion over the tumor and surgeons often confuse that with the real tumor and only remove the lesion. This explains why recovery was horrible and why I have had even more problems since surgery. You don’t have any idea how painful it is to hear that you had brain surgery and they didn’t get it so you will need another. Not only that, but in order to prove the need for surgery; we have to do the entire process over again as well as a sinus sampling which is highly risky and invasive. More so than the original surgery.

Oh, a quickie on the sinus sampling….they go up through your legs with a wire/needle to your pituitary and take samples of your tissues and blood along the way to identify where the tumor starts and ends since it is often invisible. We do know my tumor had grown in the 6 months we knew about it so we are working fast to resolve the issue!

I feel sick. I wanted to trust my doc when he came out and said that it’s over and I am going to get better very soon. He said he got it. Everyone wonders how I could have been such an advocate for doctors and now I do not trust them as far as I can throw ‘em. I guess it pays to be your own advocate and doctor…to push the fact you know you aren’t healthy. And to think the other endo didn’t want to see me for two more weeks on top of the month and a half that have passed since I told her I was feeling very ill again.

Anyway, I also got the diagnosis of diabetes today and was put on medication. I will also need my gallbladder removed shortly after a successful pituitary surgery since a doctor will only cut me open now in an emergency.

So now we are trying to get me into the guy who is the “godfather” of pituitary surgery for the sinus sampling and surgery at Mass. General. This also means I have to fight with insurance and to get an appointment faster than the million other people who want to see this guy. Insanity! Anyone with connections in Boston, please let me know. We’ll need a roof over our heads for a few days and probably some other type of support while we are there…providing I can get in. Our second choice is Mt. Sinai in NYC.

So the next round of tests start tomorrow and then we move very quickly from there other than getting an appointment with the surgeon. Keep your fingers crossed. I know I’ll beat this thing but it’s just taking a really long time.

Ok, off to try and relax…

Racing Heart

Last night I was jolted awake by a humming bird in my chest, or at least it felt like one. I could have sworn my heart was going to give out it was beating so fast and hard. I could feel it in my throat. But it's probably nothing to worry about since they are changing my meds once again.

I went to the doctor earlier this week as a follow up to the blood pressure check up and we have to take me off one of the meds because it's making my asthma freak out. So I'm tapering off one drug and adding another. One gives me horrible dryness and the other causes severe palpitations. UGH! Even this morning I feel like that damn bird is still in there. It's making it hard to breath and man is my heart pounding.

Anyway, the doc said I most likely do have a glucose problem since I'm spiking all over the map. She also mentioned that it's likely that I will have to have my gallbladder out since it is causing lots of pain and digestive problems. Maybe if they take my adrenals they can do both surgeries at once.

Yesterday the neurosurgeon called. I think it finally sunk in that this is far from over for me. He mentioned that steroids could be causing some of the problems but was more concerned when I mentioned my sugar and blood pressure spikes. He is planning to call the new endo and setting up an action plan. The thought of another surgery seems somewhat easy compared to the radiation they are discussing. The radiation takes years to work if it works at all and until it does my health would continue to deteriorate. I can't imagine feeling any worse. At least with surgery I know what to expect.

Needless to say I'm a bit freaked and not doing very well right now. It's been 13 months of testing and probably even longer that I have been sick. I am pretty shot emotionally and physically right now. And most days I am doing fairly well but it hits me so hard sometimes I don't even know what to do except cry. I just want this to be over. I want my life back before it is all ruined by this damn disease; before it takes everything away from me.

All I want to do is scream but I'm afraid it will give me a heart attack...off to try and stop this beating...

Up Bright and Early

Good morning all,

Once again I am suffering from severe insomnia associated with Cushing's. It's great for getting things done but not good for actual sleep. I'm beginning to feel the effects of no sleep once again. First my heart races to a point that it wakes me up and then I lay there trying to figure out if I should get up. It also crosses my mind if I'm going to have a heart attack. Not a very good feeling in the middle of the night. I have been trying to use Ambien to put me to sleep and it works for about an hour. So if you have ever taken the drug you know that I must be really screwed up to be able to wake up only an hour into its effect.

I hate when this happens because then my mind starts to go and I become very disorganized and forgetful. Yesterday I couldn't remember drinking part of my Gatorade while I was taking a nap. I should say attempting to take a nap. Everyday I try to rest since I get very little sleep at night these days.

But back to the confusion. I start cooking dinner and need to set the timer for every couple of minutes so I remember to check on it. Often I forget what I was cooking in the first place and end up with either too much to eat or too little. It doesn't matter as I only eat a small amount and toss the rest because my belly gets full fast. All that inner abdominal fat I have gained puts a lot of pressure down there and squishes everything. I wonder if my food actually gets digested by my stomach or gets mutilated because of all the organs vying for space. That's actually a funny picture if you think of them as cartoon characters battling each other for space in my body. Well soon enough they may have more room since I may need to have my gallbladder and adrenals removed. My next visit should tell me more about what is going to happen next.

I should say my next endo appointment on the 25th. I go this morning for blood work on the vitamin D deficiency thing and a metabolic panel. I also visit my primary care today because the new blood pressure medication isn't working. And man, when your blood pressure gets high you can tell. Imagine all those characters fighting as it is and then add a ton of pressure and air squeezing them all together. Talk about a battle royale!

I just hope they move fast this time and I can get it all done at once. Hey they have to cut my tummy anyway; they might as well take the adrenals and the gallbladder. I will try to get the doctors to do the lipo too but I doubt it will happen. :-) More of a joke anyway. Someone I met with Cushing's mentioned she tried lipo several times and they couldn't do it because her fat layers are below the muscle tissue. Typically your fat sits between your skin and muscles so they have an easier time getting it out. I already look all lumpy; I don't need anymore help. And to think I was going to get a tattoo to cover these horrible scars...At this rate I'll need my entire torso covered!

Sorry, I had to take a moment to jot down my "to do" list. I keep forgetting things I need to do and calls that need to be made so I have had to start a list again. I can't even remember to go to the store to get food these days without writing it down. it seems the past two weeks have been a dramatic decline from where I was post surgery and I'm almost back to where I started. I'm gaining weight again too! UGH! Five pounds this past week. It is a wonder I don't burn my house down or forget to get out of bed to pee...

Okay, I better go get ready for my tests...

It's Back

So I went to the new endo yesterday who was great and not judgmental! She just nodded and immediately came to the conclusion my cortisol was high again meaning I still have Cushing's...we just have to find out where it's coming from. I had the tests from my primary care called into me last night since we did that test and low and behold I have extremely high cortisol again! Almost three times the normal amount in my blood...even when I was first diagnosed I was only a little over high.

She also thinks I have diabetes and has me testing four times a day. I think she wonders why no one would treat me for the diabetes before when it was very apparent my blood levels have been screwed up. Anyway, I now prick myself everyday. My fingers are turning purple because of my clotting disorder and Cushing's makes it worse too...now I know why teenagers are scared to do it. It's like you're a marked woman with purple fingers. But hopefully this is one thing we can treat and make me healthier before they treat me again.

I'm not sure what's next, another MRI and labs for sure. I think it will probably be another surgery or two and this time I will come out completely chemically dependant. Ugh, the thought of going back in the damn tube!

I had myself convinced that it wasn't so bad yesterday but now it is beginning to sink in that I have Cushing's. I'm trying to stay strong and know eventually I will beat this but it still sucks! It screws up all my plans to go back to work and stuff...it worries me more that I can't get my life back to normal than having Cushing's. I think. Well probably not in reality but I am scared to death now that I will truly lose everything I have worked so hard for all my life.

At least now I am being treated for the pain and headaches and stuff that went along with Cushing's so I can sort of handle my everyday life...I still don't have much energy to cook dinner and clean the house, but it gets done. Perhaps some of you wanna come help me out one day. :-)

Anyway, I making the changes with my medications and working toward fighting this thing once again. At least I felt better for a little while...now let's prep for round two!

Hoping for Experience

I have yet another endocrinologist appointment tomorrow and I am hoping this one has some experience with people who have had pituitary tumors. Apparently I should be tested at least monthly for cortisol levels according to my fellow pit tumor surgery friends - regardless of my steroids use to survive. I have more than 130 pages of medical history to review from the past year and I hope she is smart and kind enough to listen. It would be nice to know some medical professional gets that Cushing's is not over once you have surgery.

Cushing's is over once you get your life back. it's not okay with me to live on drugs to be healthy for the rest of my life...I know there are side effects. I am glad to have them but don't want to rely on them forever. Being chemically dependant was a risk of this disease and one I understand but to automatically assume that a patient needs drugs to survive is not practicing medicine! Eventually parts of me are supposed to return to normal and drug-free. I'm a fighter and don't plan on quitting until I get my life back. We need to try to get me off these drugs so that I can go back to work and start doing some of the things that used to occupy my time. I can't wait to go for my first run!

Don't get me wrong, these drugs have saved my life in more way than one. But, I hate the dopey feelings and side effects they cause. The need to take something for pain and then because that makes you have severe insomnia causing me to take yet another pill drives me insane. Half the pills I take are to combate the side effects of the pills I need. Sometimes I wonder if it would be worse to not take them. I know in reality I can't come off them and do need them, but a girl can dream. Swallowing a dozen pills every six hours isn't the most attractive thing. It grosses me out, I can't imagine being the people around me!

And I know many of you think it is vanity to worry about the weight I gained while on Cushing's but it is not! It is a matter of self identity. I can't wear the same style clothes or do many of the things I would in my old body. And while I am thankful to have a body at all to live in, I can't help but be saddened by the fact my brain still sees the old me and causes strange reactions when I look in the mirror. I look in the mirror and think sometimes I will see the old "me" but then my brain gets jolted when it sees the Cushie. I do a double-take. It's hard to explain but I still do not look like me in body or in clothing and won't until I can get off these drugs...damn steroids!

Anyway, I just hope she tries to do the right thing tomorrow...

Medical Records

I ordered a copy of my medical records for my new endocrine appointment next week. More than 100 pages since December 2003 have been documented and that doesn't include the lab reports. It's insane to think they could write so much about me and take so long to diagnose me.

It angers me to learn that they thought I had problems before this got so bad that I could even tell I had Cushing’s. There are notes of it months before I was told. They delayed my treatment and my life. We are talking months, not days or even weeks. It does me little good to get frustrated now but to think of all the time I have lost. I am further than a lot of people but it just seems fair that people who take an oath to treat people don’t do their jobs and follow through. You and I would have been fired from our jobs if we let such major things slide.

Throughout there are notes of increased weight and the descriptions of my appearance are kind of funny now that I read them. I gained more than 20 pounds in less than one month – it was marked as noticeable! The descriptions in that year period begin at healthy, young woman and then go to supple neckline and healthy appetite to an obvious weight problem to severely overweight. Mentions of a tired and exhausted appearance become more frequent with time and cushinoid looking starts in the middle of last year. They even mark my hair line and acne. The tumor descriptions are most interesting since I saw a neurologist last year in December who told me that I had no tumor. His letter to my primary care thanking her for the referral mentions that I do indeed have a tumor and he has told me to seek a surgeon…umm, he has surgeons in his practice and never mentioned any such thing.

I have to be honest. I don’t remember all of these visits to the doctors and all of the details. I do remember being very ill and I guess the cortisol really did play with my memory…no wonder people who didn’t know me thought I was insane. I do remember the days of my diagnosis and my constant battles which are corroborated in these reports so I know that I wasn’t crazy! It’s interesting to see the doctors describe my complaints of other physicians…they even mention the problem I had with the endo who told me I was fat and wouldn’t work with me….that was when I got the original “cortisol problem” diagnosis based on his work from my primary care. She wonders why he wouldn’t follow up and why no tests were done until I called begging for help. I was literally begging for someone to help me. She quotes me in December of 2004 stating that “I feel like I am about to pop out of my skin.” We were discussing my blood pressure and the crawling feeling from the high cortisol.

Hopefully this documentation will help in my appointment next week. I just have to move past this and work on getting better…but it does make me angry and I think I have a right to be. Perhaps one day I can use this in my book or lawsuit with doctors who don’t keep up with their oath to help people.

Either way, I have proof now that I wasn’t crazy for all those months and I couldn’t have made this up if I wanted too!

Here I am 3 months post-op. You can see a subtle change in my face - not quite as distorted. I haven't lost weight because of steroids but my eyes and smile look more like the old me! 

Vacation Does the Mind Good

I guess you could say my little vacation did me some good. I feel a bit better but I also upped my steroids again and can function a bit better. I'm staying up until I get a doc who knows what they are doing. I met with my primary care yesterday, the one who diagnosed me, and she agrees that my adrenals are not working well. We are running a bunch of tests since my blood pressure meds need to be changed and it appears I have osteoporosis from the cortisol problems. She promises to have my results before my new endo appointment next week. She's the best!

Anyway, my vacation was nice and I'm so tired from it. i really pushed myself to enjoy it and was happy to get away from my apartment. I haven't gotten out of town since Christmas. Wow, that's a long time to sit around waiting to get out. We went wine tasting and for a boat cruise and ate dinner on a lake...all very relaxing and not too strenuous for the average man or woman. Now I just need to rest some to I get my strength back.

I'm starting to work with a few friends to raise awareness for Cushing's and the Foundation. Hopefully we make this easier on others. It feels good to get back some part of my life and be able to do something for others. I am also trying to get things ready so that I can go back to work in a couple of months - not that I have a job. But either way I need to get some freelance work or a real job by January so I can pay the bills. Living on social security doesn't cut it!

Regardless I need to think about the future. Right now I plan a little something to get me there each day but I know it's painfully slow...but every little bit counts right? Besides helping others helps me feel better and think about how lucky I am to have been through surgery. I guess I'll keep plodding along!