3 months post op!

I am three months post op today! I cant believe its been 3 months already. So much has changed in just three months from having my pituitary surgery at MDAnderson in Houston TX. This is me now!

3 months post op today!

Ok, Ok so we all know how to make a camera make us look better right? Especially us Cushies we have learned to take pictures from higher up to make ourselves look thinner lol. Heck my husband even knows the drill:) Ok so this is the real me.....

3 months post op and straight on pic

In the three months since my surgery so much has gotten better! I really wanted to write a blog about what has been happening! I am feeling very blessed for sure! Lets start off with one that I have a pic for....My hair is starting to grow back. It is really thin and I have had to cut it pretty short to make it look like it has some style. I am pretty excited because I have new hair growth and whispies now. Check it out...!

This makes me pretty excited!!! In three months also I have lost 23-24 pounds. I honestly thought that weight would just FALL off of me which it hasn't. I haven't been dieting or changing anything so I am pretty happy about that weight loss. I think I am gaining muscle too so that I am sure will change my body and maybe not the scale. Good thing though is.....I know if I do choose to diet that I WILL lose weight this time. I had dieted many times and I would literally gain weight. It was frustrating so now I am really trying to get back into even wanting to diet. What else has happened in three months. I am now sleeping. I wasn't sleeping but a couple hours a night IF that. Now I sleep (if I don't have to get up to take kids to school etc) easily 8-10 hours in a row! THIS MY FRIENDS IS HUGE! My anxiety has gone down. I have no depression anymore at all. I feel like I am becoming myself again. Calmer. Fun to be around. Happier. I have stopped bruising so much and my skin doesn't hurt to touch it as much. Brain fog.....GONE!! I have trouble still with my short term memory but I even think that is getting better. My buffalo hump is going down a little also.....

before surgery buffalo hump

3 months post op buffalo hump some improvement

I am sure it will take some time for it to go away but I can see the small improvement! I have a long ways to go on recovering but that fact that I can SEE changes and FEEL changes are so nice. The best one for me is I am not antsy all the time and tapping my foot. I can stand still if I wanted:) I still kinda sway when I am standing but that is just because my hip still hurts. My blood pressure went from HIGH to now NORMAL! I didn't get diabetes or osteoporosis but I did end up with degenerate bone disease. My eyes seem brighter too. I dont know if that is a Cushings thing or not but they seem bigger and brighter to me. A lot of good has happened and symptoms are reversing themselves.

I still am not perfectly healed by all means. Although my muscle strength is coming back slow but sure...I have a hard time keeping my arms above my head for any length of time and a hard time getting up from the floor or even my chair. Just today I was helping in a friends classroom and couldn't do some of the stuff. I kinda felt stupid for saying "hey I cant do that" but I had to and just know it will continue to get better. I have short term memory loss and still have a hard time remembering some things. I have my words back though. Before surgery I would be trying to say "Can you pass the plate?". I couldn't remember the word "plate" though. I would end up frustrated and trying to describe it (you know that round thing that you put food on and we use it for dinner). Now I have my words back and its very nice. That is one of the first things I noticed, besides that I could dream again because I had sleep. I still am a long way from being and looking like the RAE that I once knew. I am getting there though and each little baby step helps me to seeing ME again. This might be my new normal but I can take that for sure! I have many blessings.....and I hope if you are not in remission yet that you will have all those blessings and more VERY SOON!

Please feel free to email me at Cushingscountrygirl@gmail.com
Also check me out on Facebook at LaRae Jones-Collins or look up our group called "Cushings!!" on Facebook.

Pituitary Surgery for my friend, and remembering mine.

My good friend Heather is going into her pituitary surgery tomorrow morning. I have all this excitement for her because I know what can happen, the changes that can happen for the better, once the tumor is out. I had pituitary surgery 3 months ago with the same Neurosurgeon at the same hospital. I am so proud of her and how far she has come and how hard she fought listening to her body. Thinking back about the surgery it really does amaze me how they go up the nose to get a brain tumor out. Although I am sure she is scared of pain or of complications or whatever thoughts may run through her head....I try to keep it positive because it IS! This surgery changed my life. It made me go into remission. Did the first couple days suck because of nose packing's? Well yes....BUT it wasn't nearly as bad as I thought and was so manageable with a little pain medication.

hour before surgery

My life changed that day and I am hoping for my friend her life changes tomorrow for the better. We both know some ppl who have had more than one surgery BUT we know SO many more than have only had one. Either way, whatever happen, I am going to be there for my friend. We met through a Cushings website. Its interesting how you connect to someone you haven't met in real life. We talk about it all....even our kids, normal lives, daily frustrations or joys. This disease may be debilitating and suck (sorry but it can) but its amazing the blessings that come with it too. So many blessings like finding good friends!! 

Tomorrow she wont be feeling the best but I have shown her my picture collage which I hope helps her and others. Because you see how fast you go through it. Heck I am 3 months post op and no one in my town can tell I ever had brain surgery. This can be a good and bad thing. Good we don't have the scars and shaven heads but bad because well you don't LOOK like you had it so ppl don't know. It is BRAIN SURGERY so you do have to take it easy for a long time. Recovery is key

After surgery

Nose packing, its out day 2-3 though

After just a couple days her nose packing will be out and it will be a breath of fresh air. It will be such a relief. Hopefully by this time she has crashed. Not crashing like not breathing and heart stopping (nurses say this is crashing). BUT Cushings Crashing! Which is when your cortisol levels plummet. It will make her feel like crap, but this is a crap we want her to feel like........................it means remission.........! I was lucky enough to crash on my first surgery. I felt like crap but let me tell you it was the best feeling in the world because I knew what it meant. Tomorrow I am sending her flowers. And as my BFF did to me the card will write "I hope you feel like crap. xoxo". 

packing out!!!

great support from hubby

 I pray for her that her surgery goes well. I pray she finally sleeps. I pray she feels like crap because her cortisol crashes. I pray that she is not scared but hopeful. I pray that she feels a difference in her symptoms as soon as a week even. I pray her brain fog leaves. I pray her family lets her rest and that her support system understands its going to take months to recover if not a year. I pray its speedy for her. I pray she goes in tomorrow morning calm because this is something she wants. I pray most for remission that never leads to another tumor. I pray....I pray....I pray for all those things that I wanted for myself and for all the things I want for all the cushies I know. And if this doesn't happen (which i think it will) I pray she knows that we are all here for her. That its okay and we will be there everyday after that to get her back in for another surgery. I feel in my bones though that she will go into remission.

two weeks later

less than a month out from surgery

Remission is still a long journey but its the uphill side of things! Its that light at the end of the tunnel. We aren't all better just because the tumor is out. Slowly though we will get better, start to see the glimpses of our old selves. Its a magical moment when those things happen, when we see the difference. And remember Heather that when you are in remission that you will still doubt and worry because you never want to go back BUT as I had to learn...........YOU ARE IN REMISSION TILL YOUR NOT!!!!  Go get em girl!!!

No sleep to SO much sleep

As many of you know who have followed my journey I have had Cushings about four plus years. When I look back at say four years ago...I would sleep good, maybe even great for three weeks out of the month. Then I wouldn't sleep well for about a week. This would go on and off for years. I just thought It was because I tend to over think things. WHAT??? a Cushie overthink something? NEVER! See I have noticed that in a lot of the Cushies I have talked to over the year I have been really online talking to my new friends that so many of us worry more than most.....even obsess.

Even our puppy slept all the time

Overtime I started to have shorter cycles and would sleep great for two weeks and then not sleep for two weeks. Just always chalked it up to having things on my mind or things going on in my life. Really that was true though. I would notice that a troubled time (something small like how am I going to get two kids to two games at the same time but other end of town) would keep me up like what I thought a "normal" person would do because they were just over-thinking something. I figured out later looking back though that it really was the stress of something that would push me to be more in a high state (cortisol). Sleep aids didn't work, natural or pharmaceutical. I tried counting sheep,

Plenty of sheep to count at our house

I tried taking hot baths and having decaf hot tea before bed. I tried so many things. Sleep just wouldn't come. I still had to function the next day with my kids and get them to where they needed to be and do what I needed to do. Even work. 

By the last couple months before my surgery however....I had more sleepless nights than nights that I would sleep. I think I had about 3 weeks of only sleeping 2 hours a night. I would be so frustrated. I would search to the end of the internet and back. Finally some nights my legs would be so antsy or I would look at my husband snoring and want to scream (ha) that I would just get out of bed and go clean or something.

Hubby going to sleep. Comfy bed why couldn't I sleep?

I couldn't wait for the one week that I would sleep. I know that depression and anxiety are a huge part of cushings. I thought though how could anyone not be tired, cranky or anxious when they only had 8 hours a sleep in the whole week. I had to keep functioning though for my kids, my husband and for me really. 

Then I had surgery July 2014 and WHAM! I COULD sleep!!! Amazing deep sleep!!!!! I EVEN dreamt! VIVID crazy cool dreams. I hadn't dreamt in so long because I never had a deep enough sleep! I am blessed to be able to sleep. I want to sleep all night and day if I could. Of course I don't. I probably go to bed around 10 or 11 just because I want a little quiet time once the kids are in bed to relax. I get up at 6am to get the kids up and get them out the door. If I don't have something to do that morning though....I go back to sleep till about 930. If I wasn't busy I probably could even take a nap each day. Its a rare occurrence though but when I get to its sooooooo nice. 

I often wonder when I will be able to be normal again. Not too much sleep or not enough sleep. I kinda feel like Goldie Locks trying out the beds. This one is too hard. This one is too soft. This one is JUST right! :) I just have to continue to feel blessed that I am on the uphill side of things. I AM sleeping and CAN sleep and I will always remember that feeling when I couldn't. I have to continue to remember I am in recovery and to not feel bad when I want to sleep. Often I get phone calls in the morning. I am awake but I don't think my brain is yet lol. I always pray I don't sound grouchy or like I just woke up when I didn't. I am just hoping that my friends and family understand. I am still recovering.......and one day I will sleep like a normal person.....whatever that maybe! :) 

Please feel free to email me anytime at Cushingscountrygirl@gmail.com
I also have a Facebook group called "Cushings!!" 
And always check out my co bloggers blog at onedelicateheart.blogspot.com

Night all......going to sleep :)