Official Diagnosis

Well, I was officially diagnosed yesterday at my appt.  My 24 hour urine test showed it all.  Normal results are cortisol levels of 50 and below..mine was 298.  Crazy but I already knew.  The list of symptoms was just way too convincing....I am a textbook case they say.
So, now we have to find where the little booger of a tumor is hiding out.  I am off to vacation this week and then when I come back, I am scheduled for an MRI followed by a CT scan the following week.  It is so bitter-sweet.  Excited to be moving forward towards recovery but scared at the unknowns that come with surgery, etc. But..I have faith..God has brought me this far and I know he never promised an easy road but he did promise he'd never leave me.

A little nervous

My follow-up to my first appt is this Friday.  I will get the results of all my labs.  I am not nervous to go to the doctor or anything but nervous about the results.  I worry about things like them messing up the labs and having to start all over again.  The waiting is the hardest part, I just want to get on the road to healing.  Praying that the tests all turn out just as they should.

Sick and Tired of being Sick and Tired

I had a pretty good day yesterday in terms of pain.  I actually relaxed and was able to get a lot done around the house and then BAM..had a pain 'attack' that was just terrible.  I then proceeded to have a pity party and cried.  I was thinking, "Can I go one full day with no pain..just one??"  It has been so long since I have had a 'normal' day that I don't really know what that feels like.  It's odd, I can sort of remember doing things without being winded or hurting when I think back a few years ago but it's hard for me to really remember what a day without pain is like..I can't 'feel' it in my memory.  I have just hurt for so long now.  We so take health for granted.

3:07 AM and WIDE AWAKE

Gotta love the cortisol 'high' in the middle of the night.  You drag most of the day and then BAM..middle of the night and you can run a marathon. Okay, so not really but you are more awake at 3 AM than 10 AM..just another crazy symptom of good ole' Cushings.  Sad thing is, this is when I feel my best usually..middle of the night and of course, what can you get done at this time of night besides post to your blog??

Support Groups

Today, I joined the forum at a Cushing's website.  Looking forward to connecting with others going through this enjoyable expierience-lol. 

Bad day.

Today has been a really tough day.  I am just hurting all over, feeling short of breath and basically feeling like crap.  On top of that, I just read that after surgery, the withdrawals from the high levels of cortisol are much like the withdrawals from a heroin addict.  I have been about to puke ever since I read that.  This all seems so unfair.  I know, I know..no one ever said life was fair but still...this sucks.

Emotions....

Every day, I learn something new about this disease and about myself.  I learned yesterday from the Endocrine Society web site that OCD can be part of this disease.  For someone who has mild OCD like me, it can intensify it. Lovely.  Of course, I will admit that part of my nature is nice in some ways--keeps my house clean and organized. :)
The main thing I am realizing is how much it really affects your emotional status every.single.day.  You can deal with stuff normally one day and then the next, you are just an emotional wreck.  Things that normally just midly irriate you send you over the edge.  Things that may make you a little sad will send you into shedding tears for hours.  It blows my mind how something so tiny inside our bodies has so much control.
I think about this blog and it appears that I have se;f-diagnosed myself without any real prrof since my results aren't in yet.  But, this is just something I know.  The information on paper is pretty convincing but this goes so much deeper.  I know I have this disease and I am still trying to digest it but still, I know.

Scared and Excited

I've decided to arm myself with as much knowledge as I can about this disease.  I want to be prepared plus it is just my nature to want to know every single detail.  This can be a good thing and a horrible thing all at the same time.  Knowledge is power, I really believe that but when you are facing the reality of a disease, knowledge can be so overwhelming that it totally takes your breath away. 
I've not only been reading medical information but I've been reading other patients stories and blogs.  I've learned how the recovery process of the disease is often times more painful than the disease itself.  When you lived with the type of pain that Cushing's brings every day, your mind cannot almost not even comprehend worse pain.  I literally cried today thinking about it.  It's crazy but the pain after the surgery is a good sign so you 'want' it..isn't that just crazy?  This whole disease is just insane...from the symptoms to the recovery process.  It is truly mind-boggling.  It is scary.
Then, on the flip side, it is so incredibly exciting to read the end of the stories.  Healthy people, hair and skin healthy again...regaining their life.  Wow...I can only imagine!! 
I've read so many stories where people have fought depression through out the process.  I can relate as I've been there this past year, too.  Luckily not to the extent some have had to fight it.  It almost seems impossible to not fight it in some form given what you face.  You look in the mirror and don't even recognize yourself.  That is the oddest feeling of all to me.  So, here I am...petrified and excited all at once.

I hate the name Cushings...

Okay, so I know it is named after the doctor and not the fact that the disease makes you look 'cushy' but everytime I hear it or say it, that is exactly what comes to my mind.  "Look, there is a fat girl, she has Cushings and she IS cushy..."  Okay, okay so no one has actually ever said that to me...lol.  Anyways, the name still sucks to me.
On the medical front, I turned in my 24 hour urine sample this morning.  That was absolutely the grossest thing I've ever had to do.  Pee into a cup, transfer to a container that you must keep on ice.  The acid in the jug has the worst odor ever and then add a little pee to the mix..NICE.  I was sitting there yesterday and sort of giggling at the fact that I had a cooler of pee in my bathroom floor..I mean, really??  LOL.  The things we humans must go through to get a diagnosis.  Anyways, I go on the 26th for my results..seems like an eternity.

Here we go..

I am new to the blogging world, well, having one of my own anyways.  A time has come in my life where I need one and have for a while now.  I have been suffering physically, mentally and emotionally for 1-2 years and although I have known deep down that something was terribly wrong with me, I didn't know what it was until about a week and half ago.  Let me start from where I can tell my life really started to change.
In 2006, my son, who was then 4 was diagnosed with cancer.  As anyone can imagine, it turned my entire family upside down.  There is nothing worse than the fear of losing your child.  It turned out to be an aggressive form of cancer (PH positive ALL) and he ended up having a stem cell transplant as a result.  I am more than pleased to report he was healed by the Grace of God and an expert team of medical doctors..he is now almost 4 years post transplant/remission and doing fabulously.  He is indeed a miracle and I will be forever grateful that my family had the honor of watching a real-life miracle unfold right before our very eyes. The next couple of years...2007-2008 were years of healing as it takes a long time to heal from a transplant (immune system recovery, etc.)  My focus was 100% on my son. 
As he got better, I then had to learn how to start focusing on myself some.  This was no easy task and I ended up in counseling dealing with some emotional issues I had obviously been pushing down for a while.  The counselor was amazing and together with lots of prayer & amazing grace, I overcame it.  By the end of 2008, I was okay on an emotional sense but started to notice physical changes in myself that were just 'off.'  Weight gain with no real changes in diet/exercise and an overall tired feeling..all the time no matter what I did or didn't do.  I sort of chalked it all up to the rough years we had just came through, thinking stress had just beaten my body up.
In early 2009, I went for my regular physical check-ups and was diagnosed with PCOS (polycystic ovary syndrome) although I didn't really have many of the symptoms associated with it at the time.  Not being one to really 'argue', I just accepted it and went on a medication that was supposed to help.  The medicine did nothing but make me sick.  They told me to change the dosage, change my diet, yada yada.  I did what they said and still..nothing but sick.  It eventually got to the point where I just flat out told them I wasn't taking it anymore.  As soon as I stopped, I felt relief from the stomach issues it caused.  As 2009 progressed, tons of other symptoms started appearing and progressively got worse and worse. 
I noticed facial hair, acne, hair loss, no period, stretch marks in really odd places (like my arms), high blood pressure, tingling in my hands/feet, joint pain, extreme fatigue, rounded face,swelling of feet/ankles, hump on my upper back with pain, back pain, shortness of breath, sensitivity to cold, brittle nails, purple dots that would appear and disappear on my arms, pain everywhere almost all the time.  I could go on and on.  The list of symptoms were just odd but so very real.  Of course, as you can imagine, I think most people I would tell any one or two of these too would think I was crazy.  And I can't say that I really blame them because they ARE an odd combination.  That's when the physical battle became an emotional battle, too..I felt like I was crazy..I know my body was turning against me, there were days when I felt and still do feel like I am dying.  I would tell my husband something was wrong but he didn't understand and how could I make him when I didn't either?  This plays a toll on your marriage, especially after what we had already been through with our child.  I can see that now but at the time, didn't realize how much this disease was already affecting us both. 
This started my 'love' affair with the medical field.  I started by going to my regular doctor and explaining some of the symptoms.  I didn't go into great detail because I thought some of them were not relevant..for example, stretch marks..who goes to the doctor and says, "hey, I got some new stretch marks but I didn't have another baby!" I had never in my life heard of stretch marks being a symptom of anything other than being fat, which I am.  It is still incredibly embarassing for me to type that now..none of us want the world to know what we are hiding under clothes---even healthy people have their body secrets!!  But, if it will save just 1 person who reads this and gets help, then so be it.  The embarrasment will be worth it.
Back to the doctors visits....my first appointment I was told my purple dots were just a mystery and as long as they went away, I should not worry.  I felt pretty blown off but accepted their answer and went on.  Next visit was because my blood pressure was high.  I take it occassionally at work on one of those little machines and noticed several high readings.  Again, no big change in weight at this time and no change in diet..in fact, I had joined Weight Watchers and been eating pretty well.  It was high at the office as well and they put me on blood pressure medication.  I mentioned some of the other symptoms again and the doctor pretty much said the blood pressure was probably weight related although he could not explain why it kept going up even when I lost weight.  He dismissed the puprle mystery dots again as well.  The medicine did not lower my blood pressure so they increased the dose a few times and finally got it down some.
I was referred to a Rheumatologist to talk about my other symptoms (joint aches, etc).  He ran a gazillion tests..  The Xrays showed I have osteo-arthritis in my knee and back but all other tests were normal.  He told me I had Fibromyalgia.  I agreed I had many of the symptoms associated with the disease and accepted it.  He gave me some medicine to help me sleep and something for high pain days.  I felt relieved to have an answer although I was depressed over the fact that there was no cure for it and I'd have to live with this pain forever.  Then, as time progressed, I just felt deep down that Fibro was not what I had.  A good friend of mine suffers with this horrible disease and in my conversations with her, I knew what we had was similar in symptoms but the 'main' symptoms of Fibro, I didn't have..like certain pressure points.  Also, my long list of other wierd symptoms just kept getting worse & worse.
Next visit to regular doctor was over blood sugar.  Sugar was not high but A1C levels were starting to increase, which leads to diabetes.  They told me it was all weight-related but could not explain once again why it was getting worse even with some weight loss.  In most 'normal' people, the opposite happens.  They put me on another medicine to treat that.  I brought up most of my other symptoms and so they decided to send me for some heart testing.  I had a ultrasound  of my heart, an EKG and had to wear a heart monitor for week.  Everything came back normal.  Next, they scheduled a sleep study for early January of this year.  I never had that completed due to scheduling conflicts.
Here I found myself in 2010, still hurting, being physically miserable almost every single day, not knowing what is attacking my body.  I have found myself every single day trying to think of what could be wrong.  I'd hear a commerical about some ailment and look it up, just to see if my symptoms matched.  They never did so I never pursued any of them. 
It was now time for my annual 'womanly' check-up and so I made my appointment and went in about a week and half ago.  I normally never discuss 'regular' health-type issues with my mid-wife but on this particular day, when she asked casually, "How have you been..", I opened up the flood gates and told her just how awful this past year, year and a half  has been for me.  She was sort of blown away by the list of symptoms I gave her and we kept talking as she started to physically examine me.  Since she had not seen me in a year, she told me how much different I looked to her physically...from my face to my hair to my body in general.  I told her I had noticed myself physically changing and that I didn't even recognize myself in the mirror anymore.  She told me she thought I had symptoms of Cushing's.  She left the room to talk to the OBGYN that was on staff that day and without telling him what she suspected, he told her he thought I had Cushing's and to refer me to an Endocrinologist.  She came back in the room and told me that and I was like, 'okay??'  I had heard the term before but had no idea what it was.  She printed off a little info for me and told me to see the Endo doctor as soon as I could. 
I went and sat in a restaurant and looked over what she had printed out. I was blown away that the list of symptoms, my incredibly odd list of symtoms was all listed there.  It was like she had typed up this document based on what I had just told her.  Then, I read that if undiagnosed, you could die.  I then proceeded to freak out.  My feeling that I was dying on some days was pretty 'right on'..that is what was happening to me.  Luckily, I believe in an all mighty healing God and have seen those powers up close and personal.  I don't believe in coicidences and I know I was at the right doctors appt at the right time because of His will for my life.  I won't lie or pretend I am not scared or lose sight of my faith because I am human and I do.  But I always have that safe haven to return to.
I had my first endo appt on Monday.  They ordered tons of bloodwork..ten tubes to be exact and a 24 hr urine test.  So, here we go.  My prayer is the tests reveal what they should and I can get on the path to healing.