Update from NYC

Well there is some good news and some bad news from my trip before Christmas to the specialist in NYC. I was accepted and demanded to be this doctor's patient but the reason is the bad part...I have a rare form of Cushing's which requires a lot of testing and treatment. Treatment includes surgery and a lifetime of after care with her as my supervising endo. Good thing NYC is close by! She only takes three patients a week and only the hardest cases which can't be helped by a regular endo.

One look at my MRI and she saw a problem immediately and is having the surgeon look at it this week. Also, I likely have chronic hyponatremia (sodium problems) due to the previous surgery and this is what I have been confusing as an adrenal insufficiency. She said my cortisol was high adn that my ACTH (caused by the steroids) and that I should immediately come off the steroids. Coming off the steroids will likely drive my cortisol levels higher since my ACTH will then be able to go to it's "natural" Cushing's state.

She is very concerned about my physical state and increasing stomach size and infections on my skin as well as rising blood pressure and sugar levels despite treatment. That is also an indication of Cushing's. She is not worried about my mental state or any signs of depression as I seem to be coping quite well and finding outlets such as this blog for helping others as well as myself. She thought it was quite healthy to be able to talk about Cushing's and the battles it presents to patients. Many patients don't find an outlet and actually create depression issues because of it...there are biochemical issues in Cushing's that cause depression. But that was one sign of Cushing's I didn't have and probably because I seem to be a fighter.

So I have to add chronic hyponatremia to my charm bracelet and remove adrenal insufficiency since I am over producing on my own. I’m off to do my tests this week and hear about them in the next week…talk to you all again soon…and remember 2006 is the year I will get better so that 2007 will be HEALTHY!!!

Twas' the Night Before...

The big appointment at Columbia in NYC and I'm nervous as all hell. I have called almost everyone that is still speaking to me and told them every story I can think to tell...and probably not making any sense along the way. Cushing's will do that to a girl. I have emailed all my Cushie friends and offered support where I can; especially for first timers who are nervous about the pain of surgery...it's not the surgery they need to be afraid of and I told them so. I cleaned the house and made three dozen cookies with frosting and all just to keep myself busy so I don't explode with anxiety. I guess I should pop a pill for that too but I don't like to use them unless I am having bad heart palpitations and stuff.

I just took my blood pressure and it it 160/110 and my pulse is 110 resting. I hate feeling like this! I hope they don't tell me I'm crazy tomorrow and you probably think I am strange for saying that but I hve heard it one too many times even when I had evidence of my disease. It is terifying to think that these will be docs 17 and 18, I think, and I may still not et any answers. I am hoping to orrow we can get a game plan in order and I can move on with my life by the end of February. I am already planning alist of things I need to do and things I want but sadly the to do is going to come before I get to enjoy being healthy again for various reasons - mainly complications in life from being chronically ill for so many months.

I'm not scared of surgery and I want it now. And if they want they can take my adrenal glands too so I know I will not have any sort of cortisol problem...and just a reminder, those pills on the diet pills shelf are a crock of shit...if theyworked people like me wouldn't have to go through multiple surgeries - brain surgery at that.

Oh, I also wrapped all the presents today and ran the last of my errands. it took a lot of drugs to get me through it and I am sure tomorrow I will pay and barely be able to walk but maybe it will work for me and there will be no doubts about Cushing's. My friend's dog has Cushing's and was in the ER all weekend - not from complications for the Cush she says but everything is a complication from Cushing's disease. That is why we have so many problems. Anyway, the dog is ok. Thanks goodness.

Right now I know four people that are in my same exact situation...you would think these docs could figure it out since we are able to find each other and our common problems and solutions. Why doesn't medicine pay more attention to the patient and what we say vs what our tests say - we aren't crazy and we are able to talk where tests can not.

Well, I ramble with nerves so I will let you go...more tomorrow...

Still Fighting...

...just tired and worried about my appointment this week with the NYC docs. I told you I wouldn't give up and I haven't but as two of my friends indicated today - I look much worse than last time because at least before I had energy. It was nice to see them but also sad because I wasn't my usual self and it reminded me of all the things I am missing out on. I was actually jealous that they had to get dressed for work - something I haven't done in over a year now. Nor have I collected a single paycheck in that time. Ahh, the luxuries of employment, you earn money to buy clothes to wear. They asked where my coat was but I told them I don't really have one that fits so I did not wear one. I do have one coat but I can onle wear a t-shirt under it or it doesn't close. And, to think I bought it only a few months ago.

I still haven't done any of my Christmas stuff and am not in the mood this year. Everyone says they understand but it makes me sad because this is my time of the year. I am enjoying my new bed that finally got here on Saturday - that was a birhtday present. I love it. It helps the pain so much more than the old one and I actually get a little sleep in it. I still wake every hour or two and stay awake for the same but at least I am comfortable.

Thursday will say alot about my future, what happens next for my health, my career (aka bank account) and my life. It scares me to think another doc will dare say I'm not sick even though I have hundreds of pages of documentation supporting me. Although I should be happy she has already mentioned surgery. I know that makes me sound mental but it will fix me and I know what to expect if it is done correctly. This time I don't see them screwing up since thye will likely take my entire gland and I will have to be on complete hormone replacement - not just estrogen and stuff but things that make your heart beat and your organs function - but hey, at least I would be able to function and live a somewhat normal life. If they do chemo and radiation (yes they do it for tumor other than cancer) then I have a long waiting period and will be like this much longer. I do NOT want that. I want to be as aggressive as possible and start to be "Dulcie" again. I miss running and exercise like crazy becasue currently I have no outlet for stress other than writing here. I offered to make the blankets for people but they don't understand that doing that has two benefits - I make a small profit and it helps to relax me a bit.

Anyway, I am going to go, more tomorrow.

In Need of A Christmas Miracle

Today was another blow to my constant influx of bad news. Because I am not able to drive my cars breaks have rusted out and I needed to purchase new ones - which aren't cheap - so that I can make safe trips to the doctors and possibly home for the holidays. With my limited funding this was a huge blow since I had just spent my money on Christmas presents for my family who have tried to be supportive of me over the past 16 months of my life. I got some help from my mom – thanks! It makes me feel like a moron though having to ask for help. Those of you who know me, know that I am very independent and usually the one helping others.

I feel as though once I get ahead I get kicked once more or am like Charlie Brown and that damn football. I finally got a roommate to help financially so that I can make my life easier until I am able to return to work full-time. Thank goodness she seems to understand my situation and the horrible effects this disease is having on my life. It not only threatens my physical life but also the “life” I have built.

While I have stayed positive throughout most of this ordeal it is getting harder each day as I continue to grow sicker. Half my family does not believe that I am sick and the other half forgets that I am still struggling…same with some of my friends. Many have just disappeared for good. I am afraid and god knows what will happen with my career when it is time to go back. Will I? Or will I have to change completely?

Others are under the false impression that I am getting loads of money from my employer from disability but I don’t have that either. I wonder if these people have ever read more than one sentence or went to school to learn to read because obviously their reading comprehension is off! I don’t get it – no one even offers to cook a meal or send me $5 bucks for lunch…if I had cancer people would be knocking down my door to help. Yet because I don’t look sick, just fat, they don’t understand that I can’t drive most days and can usually only walk a block or two.

So I am hoping for a Christmas miracle and that between all the powers that be, spiritual and medical, I can get going and survive this thing before it wears me down to the bone and there is nothing left of me. I try to stay positive and to give as much of myself as I can and be the same person but I feel her slipping away with every football that gets pulled away. I know there are others with problems but the past 16 months have been unbearable and there are many Cushing’s patients who get abused and go through the same things as I have. They seem to be the only people who understand. It’s not like cancer where people “get it”.

All I want is a miracle for all of us Cushing’s patient’s and honestly for myself so I can get my surgery in January and start to salvage what is left of my life. I will come out different from this struggle but only better I hope if I win this fight – I just need some help and for it to come sooner rather than later! Please pray for a Christmas miracle that I get some sort of relief (financial, medical, emotional, spiritual, whatever).

I met the man of my dreams and had the career I had always dreamed of and was finally able to start giving back to those in need and those who supported me along the way…I just pray I get some of that back soon. My spirit is broken today and I’m sure tomorrow I will be back fighting but anything you can do to help will be more than welcome – even if it is just an email to say hi or tell me a story.

I’m starting to lose my need to go kick that football! Let’s hope I get good news next week or sometime in the near future as I can’t do this missing the football anymore. I swear I am a good person!

And tomorrow I’ll be back in fighting mode but I just had to get this off my chest…I’m allowed to have a bad day – hell I’ve been fighting this horrible disease for more than 16 months now…

Please hope and pray for a Christmas miracle for me as I really need one…I don't want pity just real concern and to know that you really care - that I'm not just your gossip topic or something to amuse yourself. I'd rather go it alone than have false friends and support.

So for those of you who have been there for me thanks and keep praying for some sort of miracle. I wouldn't be able to do this without you!

I'm Not Rich...

Some people have the false assumption I have lots of money but the laptop and bed (mattress and box spring) were gifts from my boyfriend and other friends have helped me with food and other things...so be assured I have no money can barely afford my meds ($500 a month)!

So please stop thinking life is easy and I'm sitting here collecting big checks...social security pays very little and that's what I get aside from small projects from friends in the industry who I help with projects when I am well enough. To underscore this point I also got a roommate to help with my living expenses. Between the two of us I can make it work but by no means am I rich or buying myself expensive gifts according to the current gossip. Thank goodness for my roomie who is understanding that I am disabled and do project work - she doesn't care because she knows I pay my bills and the rent so we have no problems. I don't buy beds and computers for fun. All my birthday money went toward medication!

Just because I used to make a ton of money does not mean I get anything from my employer...I get nothing other than side projects I create and SS Disability. Enough said.

A Day Of Death and Pain

Well today I was in major amounts of pain and very tired but to add to the sadness two of my fish died. poor marvin and Luna we laid to rest today. My brother informs me that general pet stores often add copper to water to make the fish pretty and sell them but later when you put them in "normal" water they die...I'm going to blame the pet store as it is easier to deal with. He also reminded me of how upset I get when my pets die and how funny it is that I get so attached. I informed him that I have had my cat for more than 10 years and when he goes there will be a procession down main street. I think he agrees with his feelings toward hs dog who sleeps on a pillow like a real person...my brothers pillow...guess how dirty that thing is!

Ok, I have to go mourn my fish by watching more death on tv!

Just me - not AP style

I got four new pets for Marvin, he was lonely, I think. I got a cool orange snail and a green one to keep the tank clean as well as two mollies, one black named Noche and one white who I call Luna. Incidentally the snails are named Neon and Verde, respectively. And no I am not Spanish I just happen to call things Spanish names. I called my old car coche. Kind of obvious but it makes it easy for me to remember and I get to use my vocabulary.

I got some new pain meds delivered today one long-acting oxycotin and one short-acting for break through pain. Hopefully they work better so I don't curl up in a ball in pain quite so often, especially with the holidays coming. Maybe I should write you one day when I am on them all even though they really have very little mind-altering effects like addicts claim because I have true pain not some high! I will admit though, that when the pain is gone I do get a bit chattier simply for the reason I can talk and not have to concentrate on stopping the pain mentally. I meditate a ton as I go about my daily life but you wouldn't know it. I find it does help me both physically as well as emotionally. More people should try it.

I'm writing on my new laptop! It's nice to sit anywhere I am comfortable to just write or think or whateever. Not that this is the most thoughtful posting I have ever written. I just like some privacy when I write sometimes and this allows me to take thi anywhere!

So tonight I am going to see the Lion, Witch, and Wardrobe...yippee. I have a huge coat that looks like I should be part of the cast with its lion color and huge mane-like collar. One lady shouted at me today that she loved my coat and had to know where i got it. I love this coat too because it allows me to hide some of my Cushieness. It is long suede and goes almost to my ankles but without being too dressy. It has this beautiful embroidery on the back and fur around the end of the sleeves and collar. I love it and it's the one funky piece of clothing I have left that fits. Well I bought it last winter but most of my clothes from then still don't fit. I have gained even more weight since then so I have to get new clothes. One would think this is fun but not for someone with my current budget and body shape. My friend's sister is having a baby today and is quite the dresser I'm told so I am hoping she has some stylish jeans that won't make me look pregnant. I can't seem to find pants that stay up since my ass hasn't grown but my tummy still does.

Well, tomorrow is my 32nd birthday and I'm trying to get excited but it is not happening...I can barely remember the past two years of my life either because of meds or this disease. I read my blog to remind me of my life. I just want to say, I use this journal as my personal "bitch" page and I'm not nearly as grumpy as this makes me sound. Actually it is quite the opposite. I am positive most of the time but with anyone fighting a battle this long I have my days of anger, frustration, and sadness. I also don't pay much attention to the "correctness or AP style" of my writing her since this is just me not something that needs to be edited for correctness because I shouldn't be told how to be myself and that is why I started this page.

Well I have to get ready for my hot date - he's the most amazing man to stand by me through all this. Who would have thought that one can find love in a time of great pain and suffering? I can't wait until I am better and give him all he deserves for being a constant support to me. Yikes, I gotta run, I could go one forever.

PS - AP Style is used by writers, mostly journalists and those who wish to be published...which I wouldn't mind but I have other writings for that!

A Charlie Brown Christmas

Every year I watch almost every Christmas film ever made just for the little points and meanings they hold each year. And the meanings do change from year-to-year or I notice something I seem to have overlooked. Last night I watched the tradidtional Charlie Brown Christmas.

This year that poor little tree had even more meaning for me. I was the sickly little thing and just needed some tender care. That is kind of what I feel like this year. I have made it through another year with Cushing's and am hopefully to be beautifully decorated like that tree for next year. It's my favorite time of year but I can't seem to get in the mood. I haven't baked a single cookie and I haven't even played a single CD which usually takes the place of tv in my house.

I'm hoping that my friends, like Charlie Brown's, will circle round and make me feel like Christmas all over again. I want to bake the cookies and play the music but I'm to tired and my health seems to be on a decline again. My blood pressure dropped and everything else that goes with it the other night and I probably should have went to the hospital but I can't make myself go there. Anyway, I know what to do when things like this happen now since they have been a normal occurence in my life the past 16 months. I called the doc in NYC and was told I am doing the right thing with liquids, monitoring all my levels, measuring my fluid output, etc. There isn't much else to do.

In my heart I want to do "Christmas" but I feel like I have lost my decorations and half my needles. After my birthday this weekend I will try again and I'm sure like that little tree I too will become my usual Christmas-self! Lately though I just feel like people have forgotten about me and my battle. I can't say I blame them, living with this is hard even for me much less watching a friend go through it. Besides who wants to think about such "ugly" things during such a beautiful time of the year. I just wish I could wake up one morning and not feel the illness.

It helps for me to help others and I have been emailing and chatting with other Cushing's patients and maybe that's my gift to give this year. But as of December 12th (the day after my b-day) I hope to have found a renewed spirit and be able to do both. Besides i have a very important doctor appointment on December 22 that I have to look forward to and know they can help me.

Let's hope I can decorate that Charlie Brown tree in time for Christmas!

PS - At least I did decorate my tree!