My True Weight

Okay, I am about to talk about that ONE subject that is so hard to talk about. My struggles with losing weight.....and my successes too!

I feel like I am a pretty normal person. I mean I have good days and bad days. I like to eat yummy foods but I don't particularly overeat. Actually my husband says I don't eat enough. I think that is because he is the cookie monster and I never eat cookies ha! Damn him though because he is skinny ha!!!

Most of you who read my blog know that I had Cushings. Its a disease that makes you gain weight even if you are eating 500 calories a day and all fruits. I even tried dieting but I would get oh maybe 5 pounds loss and it would never budge from there. I was SO frustrated as I watched my body change and my weight go up on the scale. The scale was my arch enemy! Some days still is!

I gained 120 pounds. Yes you heard me. In 5 years I gained a 9th grader! I was literally carrying around a 9th grader....ok not literally but seemed like it.

I am going to do what no one probably ever does on a blog or even in secrecy with their best friend. Yep! I am going to tell you my weight. I am even going to tell you my highest weight and my goal weight.

First I will tell you that I no longer have Cushings or a tumor. After three surgery in two years (two of them being brain surgeries) I am Cushings free! So that also means that my body no longer gains the weight. Actually the excess weight that I had gained starts to come off on its own. I have never been a huge eater. Maybe when we were on the Cruise ship I ate more but that's because it was vacation. Even then I didn't get the extra ice cream or such like my family did.

I am 5'11 my husband would like to think I was 5'10'' but realistically sometimes I slouch. I am suppose to weight 190 pounds for my height and my age. Yep I am old! I am forty this year. After Cushings and before my last surgery I had gotten to 334 pounds. That is crazy!! Thankfully I have always had a supportive family who understood as I would sometimes gain 5 pounds in a day...that is no joke. My husband never said a word and loved me all the same. He was my rock. He is amazing. Most men wouldn't be that way.

Today I weight myself and yes I am still very much over weight but I am 269. I was just excited that I had gone down another tier. THAT IS 65 POUNDS IN 6 MONTHS!!!! And until 3 weeks ago that was me not changing a thing. Once I started losing pant sizes and seeing my face go down I wanted to boost it along. So now I have lost a 1st grader and still have 8 more grades to go :)

I am starting to feel so much better about myself. My goal is to be the same weight I was when I met my husband by the time we go to Cabo for Christmas. That would be so amazing to me! I know I will continue to lose weight even if I didn't diet only because I gained it in the first place because of a horrible disease.

It really does make me think that in a blink of an eye you can gain or lose weight. Its a hard thing for woman. I shouldn't be proud that I weight 269 but gosh darnit I AM!!!! I am one tall lady and the fact that I am losing weight and able to move around easier and feel sexier is amazing to me!

I guess realistically I feel strong and happy. I mean I don't know many woman who tell their true weight....especially where anyone and everyone can read it. This is a very promising thing for me. I am happy! Cant wait to see what my body has in store for me in the next couple months. Doctor said by one year my weight will be off. I am overjoyed by that.

I have one last secret though.....the other day I renewed my license and I did lie on that. I mean....I still am a woman ha!

BLA Recovery (Addisons)

5 weeks ago I had some organs ripped out of my body.  Doesn't that sound crazy? Ok, so 5 weeks ago I had a Bilateral Adrenalectomy where a surgeon (not some back alley surgeon) took out my adrenals. I went from having Cushings Disease to having Addisons. It was the best thing I ever did.

I am amazed at how tired I am. Seriously exhausted. I don't have my chipper jump around talkative self yet. Its coming but its not here yet. I feel like I always want to sleep and I always want to lay down. I did have an open surgery on one side of my body so I am recovering from that however.


I have gone from never sleeping with Cushings to sleeping 19 hours a day for the first two weeks. Five weeks later I think I sleep 12-14 hours and that is me trying to keep myself awake. I know it will subside in the next coming weeks but I am curious how long this will take.


I feel like I am pretty adverse to Cushings and all the things you learn about it through your sickness. Now its like I have a whole new ball game of having to relearn and teach myself about Addisons. I know the important things. Take my medicine at 8 and 2 everyday and NEVER skip a dose. My body does not create cortisol at all. So basically from what I have read if I don't take cortisol for two days or even one I will be in a coma. Lets hope the Zombie Apocalypse never happens because I will be dead from stress or not having medicine for the rest of my life ha! I think I have been watching Walking Dead too much lately.


Symptoms of Addisons:
Chronic Fatigue (check)
Loss of Appetite (check but its coming back finally)
Low Blood Pressure
Dizziness (check)
Darkening of Skin
Nausea (check)
Vomiting
Diarrhea
Inability to cope with Stress
Moodiness (check....my hormones are still straightening out)
Intolerance to heat or cold ( CHECK!)
Craving Salty Foods


Some of these I will have for the rest of my life. Some may dissipate and go away in time. I am learning and trying to figure out my way through this. I am hoping as time goes by I will be less tired and have more energy. I got this! With the support of my family I have this even more! Addisons you and I will be friends but its going to be a good friendship....not one where you drag me down to having crisis. Lets just be friendly!

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Cushings is gone forever

I have been missing for a month. Yep a whole month. Bet you thought I would never blog again but then whammo here I am writing once more. I am going to imagine applause in my head. Why not right?

Lets get started. As most of you know I have been suffering with Cushings for many years. I had my first pituitary surgery and went into remission for 8 months. Then the tumor was back in full force. I had my second pituitary surgery and I got better for 2 months but then my numbers for cortisol weren't good so I knew I wasn't in remission. I cannot even tell you how much of a blow that was to me. Back to the doctors again and decided on the very drastic surgery of taking my adrenals out so I will no longer have Cushings ever again. Its not a surgery you can start off with at all (in case you were wondering) as it makes it so you will had Addisons (produce no cortisol at all which you need to live).


So Feb 25,1016 I became Cushings free! They took out my adrenals and I am now steroid dependent for the rest of my life. Its been almost a month and I am still recovering as one side they did laparoscopic but the other side had trouble and had to open me up. I have to lay down  A LOT and sleep A LOT now too.

They believe according to my organs (that are twice the size of normal ppl because of excess cortisol) that I have been dealing with this for 10 years. I have only known myself though for about 3-4 years. There is a lot of why I decided to do such a drastic surgery but I can put it into two simple pictures. Here is Cushings Symptoms and here is Addisons. Which would you choose. Plus Cushings I CANT control. Addisons its all in my control.

So its been a month. Things are getting so much better. Today I weighed myself and I have lost 40 out of the 120 pounds I gained on Cushings. One month!! I feel so much happier. My blood pressure that was high and erratic is now normal and perfect. I sleep. I sleep a lot actually because I am still recovering. It takes 6 weeks for an open surgery plus withdrawals from Cortisol that I had 4-8 times the normal amount. Each day I am getting better, stronger and happier! Once I am up and about more WATCH OUT WORLD because here comes Rae-Rae! For the next two weeks though my bed and I will still be good friends!


So that's my short story to catch everyone up. Now I can get back the daily program of good blogging:) Funny weird stuff that is always happening in this house like when I heard one of my boys say this week that when they were little they peed in their own eye.:)  Love you all! Its good to be back!


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Superhero vs Zombie

Superhero vs. Zombie this is my life lately. I am excited that in two weeks I will have my last surgery and finally be done with Cushings for good. Its a drastic surgery but its so worth it.

So I do this cant sleep insomnia thing at night. I think in the last 5 days I have had a total of 12 hours sleep. Cortisol runs rampant through my body at night. Right when I think I am going to get tired I actually amp up. That is because with Cushings I have the opposite Dural rhythm than most people do. Normal people your cortisol wakes you up in the morning. When you go to sleep the cortisol has dropped to zero and you sleep. With Cushings your cortisol is high at night instead of at zero and no matter how much you WANT to sleep....you cant.


Insomnia is my worst symptom by far. On Feb 25th however that will be gone forever. I am choosing to do a dramatic surgery of taking my adrenals out. I will no longer even create cortisol. I will have to give this hormone to myself daily to live. This is the trade off. I am willing to take it though so once again I can be "normal" for my family.


This is things I do when I cant sleep or am in a Cortisol High....

Its like I have excess of energy and if I stop moving I will feel frustrated. So I cook or clean or read or clean some more. I am sure the kids love waking up to a super clean house with all their laundry set out waiting for them. Maybe they don't even notice I don't know ha! Once I made 10 casseroles for surgery while I couldn't sleep. Keeps my hands busy and kept me going to do something constructive. This will help us afterwards on days I don't feel like cooking. Also help MIL the 9 days we are gone on the days she doesn't feel like cooking.


Then like today after 5 days of not sleeping I am beat. I still do everything I need to like laundry, picking up kids, feeding kids but I am exhausted. These are the days I wish I could sleep more and if I have the chance to nap I do. Life still has to go on no matter if I am sleeping or not. Kids and Animals need to be fed and nurtured:) It might be a pizza day on those days however. Or a good easy hearty soup from scratch. Something simple. These are my Zombie days.


I am sure normal people without a Chronic Disease have these days too. Super hero to Zombie days. I am thankful though that in just a couple weeks I will be back to the Super hero all the time days. I never miss a big event no matter what but now I can stop missing those small events too. AMEN!


I want to thank everyone who has supported me and my family through this daily. Thank you for the prayers and all the wonderful feed back I get daily. I love you all!


There is a lot to look forward to this month. In just a couple days who of my kids are Homecoming Attendants. Then we have Senior Night for my oldest last basketball game. Sadie Hawkins Dance after. A four day weekend. Valentines day. My oldest is turning 18 (Yes I am so old!) and we are having a fun weekend away. Then my surgery. Its a busy month but a good month. Those are all the big moments I wouldn't miss for the world. Not a chance! Cant take that back when they are older and looking back on those moments. So for this rest of the month even if I feel like a Zombie I am going to put a smile on my face because I AM truly blessed and be the Superhero.


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My BIG Decision

Have you ever had one of those decision that will impact the rest of your life? Besides having kids ha! I haven't been writing for awhile which I am truly sorry for. I have all these great intentions and even think "I need to write a blog about this" but then sadly my fingers haven't made it to the keyboard.

In our family we have some pretty big news. I wish it was better news like we were having a child or something or I got a new fur baby yet again.


After my second brain surgery I went into remission. Everything was looking up in the world. I started losing weight, was feeling better etc and then I started to notice month 3 that small things were happening again. Did some testing and I am not in remission.


I am not a candidate for a third surgery. I went to the two best surgeons in the USA. When you do that there isn't much chance they are going to find something again. Let alone maybe one cell that was left behind. I do not want my whole pituitary taken out because then I am dealing with 11 hormones for the rest of my life. That isn't something I want for myself.


Cushings has been with my body for a long time. It makes you feel crazy sometimes too like you are a hypochondriac. Like "do I really have this?" or "Am I just crazy?". Its a disease  that I wouldn't wish on my worst enemy. It robs you of so many things. Your body, your health, your life . So now I sit worried what are we going to do? I cant have this rob me for the rest of my life.


I have truly amazing doctors. One is my Endocrinologist Dr. Cohan. He is this amazing guy who even when he is telling you bad news he says it so gently that it hasn't sunk in till you are in the car. HA! That is a Doctor that I want on my side. He gives you options. He doesn't push you on those options either, which is what I expected but it never happened. He educates you on each thing and lets you do whats best for your body and you.I had a couple options. One of them was taking a Cortisol Blocker Drug, one was taking out my Adrenals and one was Radiation which we both didn't really agree on.


I chose probably the more drastic one. To have an Bilateral Adrenalectomy. This is not a decision I took lightly though, as it will be something that gives me Addison's Disease for the rest of my life.

What is Addison's disease? (taken from MedicineNet.com)

 The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and nonexposed parts of the body.


Its something that I really have to watch and will be dependent on Cortisol for the rest of my life. One thing that used to be my enemy is now going to be my friend. Where stress whether good or bad will cause me to have to monitor in my impute even more.


I personally just don't want Cushings anymore. I feel like I have taken the steps to get it out of my body. It makes me feel like I am not living my life the way I should and always have. Cushings in some way has robbed me of who I really am. I always try to be VERY positive on things. This disease has worked on me and my positivity. I will not let it win though. I just wont.


I have more tests to take to make sure that this is without a doubt a reoccurrence. To me that is a good doctor. I am about to do something pretty dramatic by taking out both my adrenals. I remember sitting in the office with him, I started to cry (which I hate to do in front of people). I asked him "Are you sure that I have Cushings? Is there anyway I could possibly have anything else". He looked at me and I already knew my answer.


I have a lot of faith in my Doctor. I know this is not always he case with those who have Cushings. I am lucky enough to have always had good Doctors along the way. Blessed really. He is someone I completely trust. I know he has the skills and the energy to deal with me. He gets back to me right away and doesn't let me stress even further. His office staff is great. That's a bonus too! I had an amazing Endo before but I knew when I went to Dr. Cohan that it was someone who I wouldn't be leaving. When you trust in your Doctor and can have a good working, professional relationship with him....it really helps!


So at the end of the month pending my tests I will be going in for my BLA. Cushings will forever be gone. I will not be able to produce ANY cortisol. I wont be sad its gone! I will be throwing a party (ok maybe after recovery haha). I know it wont be an easy road as I will be Adrenal Insuffiencty and have to really watch that. I think that is something I can manage though with diligence and paying attention to my body. I have to manage it. I will have no choice.


I am ready to go to the next Chapter of my life. I am ready to live a better quality of life. I turn 40 weeks after my surgery. Its like the best present in the world to me to not have Cushings anymore.


It took me a long time to write this as I was almost afraid to put it out there in the world. Gods got my back though and Dr. Cohan. I am thankful and in my prayers each night I thank God for all the people in my life who give me strength and support. My friends, family and Cushies always surround me with love. I am so thankful for that!


I don't talk about Cushings a lot on my blog as its a personal blog about Ranching, my Teens, my Family and our life. Cushings has been a big part of it though so you will see some posts throughout the year. Soon......you might never hear the word be uttered out of my mouth ever again:) And that folks makes me ecstatic!


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