I Need A Job

Yes, Mary needs a job. Because if Mary does not find a job, nothing in this house will be safe from THE OCD SORT! Soooo, this was my first week with both of the boys at school all day. I decided on Monday to re-sort our massive lego collection. I sat on Ben's bedroom floor for 3 days straight and sorted EVERY SINGLE LEGO PIECE WE OWN!!!!! I then started to tackle the school organizing which included a "homework station" and a book bag station. Yep- I definitely need to get a life.

School Days!!!!!

As you can see, Ben is still not happy about school starting. I get it, I am not jumping up and down with excitement. But Gabe- well he can hardly contain his joy!!!(It really bugs Ben-more so when I tell Ben he used to be as excited as Gabe.) During kindergarten orientation I made the decision to have Gabe attend the extended day of kindergarten. Meaning he will go M,T & W all day and TH&F 1/2 Day. He loves this arrangement. I, however, am not really to sure what to do- ALL DAY. As I called Kevin from a store to see if we needed some new furniture he said, "This clearly is not going to be a good thing." So- What's a girl to do? I have not taught in 9 years. Do I go back to teaching? I know I would be a very different teacher now that I am also a mother. #1 thing I would do- get rid of homework. Since there is no known data that says homework is a good thing and all of the research points to homework being a bad thing- I would just get rid of it.Because I am a mother now, I KNOW there is no time for homework.#2 I would put all of the parents of my students on a point system. You get points for good deeds for the class. You lose points if you feel it necessary to gossip about students in the class, myself or any other parent. And guess what? You can only come INTO the classroom if you have enough points. #3 I would hire a third party to complete my grades, attend extra curricular activities for the school, prepare, lessons, etc. Because now that I am a Mom, I KNOW how difficult this these tasks would become. Finally, I would require that my husband come to school every single day, to make sure I am happy, if that time should fall during math and I am teaching above 4th grade, he will be required to teach the lesson. This is important because the children in my class would need to realize, someone loves me and I do have a life outside these classroom doors.
So what do you think? Is it worth it? Actually part time work sounds more appealing and it would keep me out of the mall.

School Begins

School officially has begun. It was very strange putting both of the boys on the bus this morning. As you can see, the start of the school year is very different for a kindergartner vs. a third grader. Gabe could not contain his excitement. Ben could not hide his sadness. I have not quite figured out what I am going to do all day. I am sure I will find something to do. The problem is Kevin said it can not involve money. That really puts a damper on a suburban wife who gave up her career to raise the children. I know how to do many things now-unfortunately all of them involve money.

Funny

I needed a good laugh as I am sure you will too after reading the next few posts. Sorry in advance for being such a downer lately.

Happy Family

Oh look at our happy family. In these pictures we are just heading out the door to the BACK TO SCHOOL ice cream social- oh we are so happy. Aren't we a perfect family? Well let me tell you what you can't see in these pictures. Before they were taken we fed our children a healthy meal of sausage and noodles at 3 PM because that was the only time we could squeeze it in All through "dinner" they told us all the reasons why summer vacation simply could not be over including the fact that we have done NOTHING this summer. The dishes were still on the stove, dirty laundry within inches of our picture,toys EVERYWHERE! I actually had to hide the fact that I too, am in mourning about summers end-openly lying about my excitement. Gabe wanted to know why he was wearing "church clothes" What you also do not see in our happy little family pictures was the event. Gabe met his new kindergarten teacher. As this sweet women was engaging him in conversation he actually covered his ears and rolled his eyes. I then closed my eyes and prayed for him to stop. So when school starts I will not know his teacher's face(my eyes were closed) Gabe will not know the sound of her voice(his ears were covered) And the whole time Ben kept telling me "he was STILL not excited" School starts Wednesday. Who cares if no one in our family wants it to. We will stand and take our typical first day pictures. And life will move forward as another school year begins!!!

Hi My Name Is Mary And I Am A Zebra

Soooooo- After completing numerous tests and logging countless trips to draw gallons of blood, after drinking liquid chalk, thinking I wet myself, having a arm that looks like a drug addict they are no closer to knowing WHY my cushings is back and no idea how they will treat it. Which quite honestly just SUCKS! I have learned some new things along this, my 2nd journey down this twisted path, which is just as bad as the first.
* MRI'S are only as good as the person performing them. Should be concerned that the people who conducted mine could not even get an IV started?
*What is the MEDICAL definition of NORMAL? What is TYPICAL? If I am neither doesn't that alone, make to you curious to investigate further?
* There are 2 different kinds of Cushings Disease. The kind that doctors read about in medical school, the kind that speaks in numbers, levels and terminology and there is the Cushings that I live with every single day. The one that is very real. It is not a number- it is my life.
To be a DOCTOR of a cushings patient means you test and test again. Because the disease is rare, but serious, it is important to carefully exclude other disorders, I get that. What I do not get is why, during this second testing phase, when I have a confirmed diagnoses from one of the leading medical facilities in the world, I am still in limbo.
To be a DOCTOR of a cushings patient means you still have a life. I am not saying a doctor's life is perfect, but it is most certainly better than mine right now.
To be a Cushings PATIENT means your life slowly fades from around you. Your body aches, your head aches, you sleep A LOT you wake up at 3 AM a lot, You talk less and yell more, and you sleep some more.
To be a DOCTOR of a cushings patient you talk in reference to "typical" and "normal". You ask your patients to "wait and see" but if you are the PATIENT you have a difficult time waiting and question what it is you are waiting for. You have a life to live. You can not order back time so the sooner the better. Any doctor who asks me to "wait" is obviously not living my life, paying my medical bills, that doctor is not entertaining my children when all I want to do is sleep in the middle of the afternoon. That doctor is not hiring a nurse, a nanny or a driver while I "wait" and life keeps moving around me.
To be a cushings PATIENT means you have to put on your battle gear for every appointment. You have to defend how you feel. Defend the very disease with which you have already been diagnosed with. You need explain over and over again YOUR "typical and normal" not the MEDICAL version.
I expected this long road. Remember- during 2007 when I was struggling with this EVERY doctor said I could not possibly have this rare disease. When the tumor stained positive for ACTH and they all said I guess you do have it- oops there were no apologies. Why should I expect this time to be any different. After all, remember, I am not typical or normal.
I recently read a story of a woman who is in medical school and trying to get a cushings diagnoses for herself (I wish I could remember her name so I could give her credit.) She said, in part "...There is a saying throughout medical school that they often tout. When you hear hoof beats, think horses, not zebras. The reasoning being is that zebras are rarer than horses therefore to be logical and a good doctor, if something resembling a zebra walks into your office as a doctor you should assume that it is actually just a normal old horse, even if the zebra comes in saying they are a zebra and hands you their drivers license."
So here I am again- in limbo waiting for treatment options, waiting for my life to simply go on. Waiting for MY normal.

Healing words

I am a firm believer that everything happens for a reason. I do not think there are coincidences and I never think I am lucky. I was on my way this to Target this morning. I heard 2 of my favorite songs On 2 very different stations. Coincidence-no. Answer to prayer- yes. I have really been struggling lately feeling sorry for myself. I want answers and a treatment plan in place and what I am getting is a constant stress, more tests and still no plan. My trip to Target proved to be therapy of sorts.

music

I AM OLD!!!

Tonight at 8:55 I said to my darling children, "You have 5 minutes to tell me whatever else you need to, you have 5 minutes to have me help you in any way- because at 9:00PM I am punching out." (PLEASE tell me you remember time clocks!)
I got blank stares-Confused looks. Ben told Gabe, "I think she is REALLY mad."
So I said: OK Let's try this again, at 9:00 PM, I am logging off, shutting down, my screen will be blank.
Looks of understanding followed and they went to bed.
I am still feeling so OLD right now, because I remember 8 tracks.

Lately, I do not like the phone. I am so tired of the back and forth calling between the doctors office and me. I have decided to try a new strategy when I call. I will start with my speech. It will go like this:
Hello! It is Mary again. I am sure you know me because I probably yelled at you yesterday. If you are new, my apologies for yelling at you later. I just held for 5 minutes. To you, someone who is getting paid, that might not seem like a long time, but you see, I am not getting paid. I have 2 children who come running to me with "emergencies" the minute the phone is at my ear. I am trying to unload the dishwasher and load the washing machine and having phone attached to my ear makes this all very difficult. So- no more of my time is wasted let me be clear. I do not care if you like me. I am not calling to tell you Hello or to see what you did last night or even how you like your eggs. I am calling because I am SICK! I need my test results. I need to SPEAK with the nurse or doctor. To you these numbers may not seem like much but to me they will change how smoothly my nice little life is right now. The return phone call should happen before 5 PM tonight. I do not care if you have to grab the person who is about to change the paper towel roll and have them call me, at least then I will know you are thinking about me. Just CALL! And here is a little tip: When I ask you if my test results are in- ACT STUPID- you do not need to tell me they are in but the doctor needs to review them and to do so would not be good for you because you see, then I know you are looking at my numbers and I will become relentless in my quest to pry them out of you. Finally- I am allowed to get "the ugly voice"- be thankful you can not see my "hairy eyeball". I do not like to do it but I am sure you will push my voice into sounding very ugly. Remember I get to sound ugly I am SICK and not getting PAID! You, however, do not get that luxury, you are hopefully not sick and you are getting paid. I am sure you have heard or even witnessed yourself, If your voice turns ugly mine turns downright hideous. So should we review? No holding, phone call back, no mean voice. Any questions?
Good-Bye

We Are Back!!!

We are back from our trip to Wisconsin!! The boys had a great time. It is hard to believe we are back to school in 2 weeks. There will be no happy countdown for that- Ben refuses a countdown to school!