Van's Recovery List (PICS) and Good news!

Hi guys! I apologize for not updating in so long but don't worry I am still very active in responding to my emails, youtube (onedelicateheart), and instagram (1delicateheart). Ever since coming back from the New Jersey trip I have gotten so many emails and messages from Cushies and people who are in the diagnosing process.  So feel free to contact me from those various social medias. Best way to get a quick response is to email me at yumnguyen07@yahoo.com 
If you guys haven't checked out Rachel and Rae's website cushingstories.com then you better go and check it out now. I am so proud of these ladies for doing so a huge thing for our cushie community. There are stories, contacts, and videos for you to learn more about. Please share <3

So I have big news! I have fully weaned of steroids for 3 weeks! My doctor told me that my left adrenal gland has woken up. It is functioning at a low level so my adrenal gland is not producing like the normal average person but my body has adapted to the low levels so I decided to quickly taper off the rest of the hydrocortisone (Cortef) because let's face it, it is a pain in the ass to take and still felt bloated from small amounts! Well, how am I feeling? I feel almost perfect. Like I am 97% there. There are times I notice the change in energy and feel great then sometimes I feel lethargic and faint due to the fact that I have used up the little amount of cortisol reserve that I produce but nothing that I have not already been through and it is bearable. I still get very faint often but I think I need to start eating a diet that supports the hypoglycemia issue. And of course how do I look? Well here are some photos for you guys to see =]

  These pictures are all post op and recovery. and no I did not get facial surgery during recovery, it's just really good makeup tricks I started learning that I want to share to you all soon! But now Here is the breakdown of my recovery. This is not the most organized list sorry! lol

6 Month Post OP: moon face was shrinking, acne growth stalled, skin got a bit drier, still bloated, face still felt heavy (hard to smile or open eyes wide), droopy skin, reddish orange skin, no hair growth, depression, anxiety, nausea, hello collarbones! dry eyes, adrenal insuffiency was at it's worse due to tapering. high bp but pre diabetes was gone. Sleeping all the time. Lazy, no motivation. panic attacks. Crying all the damn time.

10 Month: Face continued to shrink, features feminizing (eyes and lips look more pretty??), smiling is easier but still felt like cheeks were heavy, acne fully stopped, skin healing, hair growth (baby hair halo) not so healthy looking though crinkly hair texture, period was back (still irregular), buffalo hump shrinking, itchy dry skin to the point I can't sleep, body adapting to adrenal insuffiency, acne scars, less depressed, up and down emotions and mood, nausea, faint, period still irregular. Insomnia. undereye bags circles. Panic feelings, no attacks.

12 Month: I have to say I felt much happier after a year since the surgery, My face is almost back to normal, features are slowly defining, smiling is easy, hair is starting to regrow fuller but texture is still crinkly, no more acne problems, super duper dry skin, less crying, less stressed, I notice myself being funny and enjoying life like never before, began socializing again, face dimple is starting to show, jawline, cheekbones and nose looking slimmer. less nausea, Less paranoid. Insomnia. Doing normal activities. Shopping addiction due to weight loss and increased confidence LOL

14 Month: period came back regularly (feeling prettier after every menstrual cycle), skin is glowing, reddish orange skin fading, acne scars healing, less hair fall, wondering if this was as good as it gets??, face features more defined. fainting, low bp, dizzy, Mood is pretty stable but I still will get cranky when I being weaning off more steroids, more confident, no more sadness and resentment in my heart.. I literally woke up one day feeling like all the bad stuff and people in the past did not affect me anymore. Truly a miracle. Is this it? Will it get better? Sleep is up and down.

16 Months: face is back to normal, dimple is fully visible, jawline is chiseled, sleeping more, period is irregular again (due to low amount of steroids?), hair is healthier and shinier better texture, acne scars are less visible, night sweats, fainting, dizzy, extreme low bp (good thing? idk), satisfied with how i look but still worried if I still would have the highs and lows of moods and dizziness.

18 Month (fully off steroids): Face got even smaller less bloated (yeah I didn't know that was possible), I can now even smile with my teeth effortlessly, skin fully healed, scars are not as visible, I feel confident enough to go makeup free while running errands, people complimenting me, strangers think I am younger than my age, my mom says I look like I did back as a senior in Highschool! Thanks mom. Still faint and dizzy, no more obsessive thoughts, no more paranoia, no more guilt, anxiety, or shame, no more negative feelings. Mind is at peace, skin still dry, period still irregular but still coming, facial features look lifted, eyes are brighter, eyes are less dry, feeling motivated, not afraid of speaking my mind. No more panic attacks! Still food sensitive. No more waking up at 9am to take Cortef yay!
 

My body Recovered:
Less joint pains, muscles are starting to look more defined with little exercise around month 9 post op, no dieting, appetite is normal. No more feelings of being ravenous with food, body is getting a more feminine curvier shape, fat is relocating to where it should be instead of on my stomach, buffalo hump gone. I can feel my spine, collar bones, less body and facial hair, more hair on head lol... no more orange hands, still food sensitive to salt, sugar, and MSG. Can drink coffee without panic attacks. Can lightly workout and lift light weights with less muscle pain. Still cannot run or do any hardcore exercise training (not that I ever want to again). more flexible. no more bloating in weird places. More active. Feet shrank 1 size down (size 7 to 6-5.5), no more rapid hearbeats. Feels like I can breathe again. The heavy brick feeling on my chest is gone yay! Digestion is greatly improved.

That is all I can think of right now. I am thrilled that my future is filled with more optimism. I am glad that majority of the stuff is reversible. I am still stuck with a few minor health nuisances that Cushing's affected. I really don't think it is going to ever get me down because everything that I prayed for I have been given by God and the Universe. This whole experience really shaped me to become who I am now. I am stronger and humbled than I was ever before getting sick. I am glad that I got to meet so many people and understand the struggle of getting everything taken away from me. I learned the lesson of compassion, patience, and gratitude.  I will continue to advocate for Cushing's and rare diseases. So I will always come back to blog and update my life. I also want to be more active on my youtube channel and posts some videos of me talking about various Cushie subjects and giving advice to Cushie patients and also post my beauty and health regimen. I just need to get over my fear of talking to a video camera lol. Thank you guys for reading this post and supporting me through this journey. I will never forget. Much love!

Before and after

A week from hell? Or was it?

Understanding Cushings by #Novartis

I have had a week of craziness. One of scary AI events to one of victory and fun and happiness. I guess that is a Recovering Cushies life. I have good days and I have bad days. I guess I will start from exactly 7 days ago. Just to give you an idea of my week

Monday-I woke up with my throat killing me for the second day. Made an appt to go see the Dr but that never even came. See when you have a fever, or are in pain, or have a sickness after having pituitary surgery you have to stress dose. Before surgery my tumor would create me to have excess cortisol. After my surgery and now that the tumor is out I am retraining my body to produce its own cortisol therefor I take it in the pill form. When you are sick your body eats up the cortisol or sometimes its hard to even keep it in your body because of vomiting, diarrhea etc...   This was me. I couldn't keep my medicine down. I started to vomit, already had a fever, my throat was killing me, started to get really confused and my hands and arms felt like they weren't working. My husband thankfully was there, gave me my 100 mg emergency Solu-Coref shot and we went into the ER midday. Once at the ER my blood pressure was sky high which is usually abnormal for someone who is going through Adrenal Insufficiency but I am one of those rare ppl who it shoots sky high and then plummets fast. That's how I knew something was wrong besides that I was loosing my thought process and my arm functions. My blood pressure has been normal since surgery but that day it was 194/133 and my heart was racing. Thankfully the ER doctor got ahold of my Endo and he said yes Blood Pressure can go high and to treat her. I had my emergency letter so they gave me another 100mg of Solu-coref, 2 bags of IV fluids, tested me for strept (I was positive), gave me pain meds and then tested my electrolytes and salt levels. Once I was feeling better and stable they let me go home with a prescription of Penicillin.

Tuesday-Woke up still feeling bad. Went by Dr orders and tripled my cortisol intake for the day to be able to keep enough in me since my body still had temp. Took my antibiotics by mouth. Stayed in bed all day. Got up just to go to the bathroom. Fever finally broke that night.

Wednesday- I woke up on the third day and my throat was killing me. Hurt to swallow but forced fluids down. Took my antibiotics and my cortisol as instructed by the Dr. Was not feeling well. Felt overly tired and felt as if I was getting low again. Stress dosed again. Started getting nauseous and then couldn't keep anything down. No fluids, no medicine.....started to once again go into Adrenal Insufficiency by not being able to lift my arms well or keep any meds down. Started to want to just sleep, sleep, sleep. Husband once again gave me shot and took me into the ER. This time they knew I was coming and had everything set up for me. Got another 100mg Solu-coref. Iv bags of fluids, Pain medication for my head from my blood pressure that was once again sky high on the way to the ER and then plummeted by the time I got there. We live 45 minutes from nearest hospital. THIS TIME though they gave me a shot in the rear-end of Penicillin since I had not been able to keep my meds down. I got replacement fluids and was released to go home 5 hours later.

Thurday- Decision day....I woke up and my throat felt better. I still sounded horrible but I could swallow and I felt so much better. I didn't leave my bed much though because I had a big decision to make. Two of my four kids were having a Championships game in Football. Not only was it important to not one BUT Two of my kids but it was the first time they had been to Championships since 2003. This was a big deal to them. I had been to every one of their home games and went to their playoffs and didn't want to miss their championship game. I still didn't feel well enough to even think of going yet but I would really think about it. By Friday, if I felt better then I was going to go. I decided that we would just stay in a hotel that night so I could go to the hotel and rest before and after the game. I didn't want to play with fire but I didn't want to not be there for my kids. Its a fine line. To me I felt like this is something they would always remember though. I knew if I felt better the next day I would be going.

Friday- Game day! I was feeling a lot better. Still not perfect but I decided I was going to be at the game. Told my boys I would see them later that day. We took the 2 hour drive and checked into the hotel. Made some posters, got new rain jackets and even bought a couple new winter clothes for the game. It was sprinkling when we left. Once at the game I kept having friends and family watch out for me. I couldn't scream (didn't have enough of a voice) but I clapped and cheered. The smiles on my boys face was unforgettable. They were excited, pumped up and happy we were there. That night it rained a lot and I knew that me being there probably wasn't the best decision in the world. I wouldn't of asked or even told anyone else to do what I did.....but for me....and my life....it was what I wanted to do. I know this is going to sound dumb to some but I don't want to live my life with regrets. My mother died at 55 years old from cancer and the one thing she said to me was to LIVE, LAUGH, LOVE.....so for ME this is what I was doing. I am proud to say that my boys and their whole awesome Cardinals team WON!!!! It was such a big celebration and to see them jumping up and down screaming was awesome! Even better was when both teams came together and prayed. It was a site to see. I am so glad that I went. I knew I would have to take it easy for the next few days as I was still recovering but it was worth it to see my sons faces on this day in their lives that they will not forget.

My boys so proud of them

Bundled up

They won!

Saturday-Monday... We slept in and decided to stay a couple days at the hotel. It would be a time for shopping, movies, going to Turtle Bay Museum and Toytopia. I am thankful I have the husband that I do. I went out when they went to eat and went to a movie or two in the next few days. The rest of the time I was back at the hotel resting or sleeping as my family went shopping, swam at the hotel, got haircuts, went to the bird house etc.3/4 of the time I was in the hotel resting. I am a lucky gal. I didn't get sick after and I am continuing to get better. I know in the future I will definitely have to remember to watch it when I get sick. I will have to make sure that I rest and recover. I am not saying I would want anyone to do what I did. It was just the right decision for me and my family. I have no regrets for this week. It started off pretty scary and I am really new at this (being only 3.5 months post op) but I am learning along the way. I am also so thankful for all my friends, family and Cushing support who tell me how they feel. Are honest with me and yet not mean. Who help me to learn as I am going also. I want to say thank you for that awesome support.

Now this coming week....Thanksgiving.....

A shot in my butt....Adrenal insufficiency is no joke!

Happy Halloween....my first real Adrenal Insufficiency day:( But I learned a lot, let me tell you.

How did it start you might ask? Well I am three months post op and went in to get my blood draws to find out how my cortisol levels were to see if I am still in remission. To do that you have to NOT take your cortisol for 24 hours. Somewhere in my head I thought it was 48 hours. Its not! I have now learned.

So I withheld my cortisol for two days. Went in and got 8 vials of blood draw to check cortisol, Acth, Growth Hormone, Vit D, Thyroid etc... I knew that I would be taking my cortisol right after my blood draw, which I did. While I was there though I was asked if I wanted a flu shot. I thought of course. So I got one of those too.

Four hours later I am feeling really achy. Like I am low but I just assume its the flu shot because sometimes it can give you flu like symptoms. One more hour later and I just am really tired and not feeling well so I go to bed really early.

I wake up in the middle of the night and vomit. I am thinking "seriously I shouldn't of taken the flu shot". What I didn't realize was I was going into Adrenal Insufficiency. I was aching so bad I could barely lift my arms. I was so sick to my stomach. I would take my cortisol and it would come straight back up. I took more to try and keep it down with an anti nauseous pill. Finally my husband realized I was going into Adrenal Insufficiency and said its not the flu. I was getting to the point where I was so confused. I couldn't barely keep my eyes open. Thought I was sleeping 2 hours and he said it was 10 minutes. All I wanted to do was fall into a sleep.  I kept saying stuff I just would never say. I couldn't even open the bathroom door because my hands hurt. We emailed my Endo and he got back to me right away! So great to have a awesome Cushings Endocrinologist who emailed me back on his day off. He said take my sol-coruf shot right now and then 30 mg orally after. Then double my regular dose for three days and take it easy. My husband got straight to grabbing my emergency shot and put it in my thigh/butt area. Within 30 minutes I was starting to feel clearer. My arms started being able to move. I wasn't feeling so tired. But I wasn't all better. So I took the 30mg orally and started to feel better. Most ppl would have to go to the hospital for hydration and also another 100mg. So if this happens to you I would recommend going in. We live so far away I just went off what my Dr said to me. Each case is different though so please go to the hospital.

It was a scary moment for us. We live 45 minutes from the nearest hospital and I am so thankful that I had the shot here in my house. I have heard so many horror stories about this. People going into comas or even dying because they didnt get the shot or get to the hospital. This is no joke!

 Now its the next day and I feel like I have the worst hangover ever. I feel my head throbbing and kinda still a little nauseous but doing WAY better. I do notice also that I am feeling more stressed. I am sure that has to do with all the cortisol running through me. The shot is 100mg. I take 7.5 now a day. So I will be taking it WAY easy to get my body back to normal. I am also taking double my regular dose for three days like my Dr told me too.

So what is the moral of this story? Adrenal Insufficiency is no joke. Don't take it lightly. Look for the signs and symptoms of it and take action. I am lucky. I could of slipped into a coma or not gotten to the hospital in time or not had the shot with me. I am lucky I had my husband there because I started to get really confused. Many ppl are alone and we need to really figure out what are symptoms are. I learned you only do not take your med ONE day before your blood draw not two. Do Not take flu shot when you are withholding cortisol from your body. If you are thinking you need the shot....take it. Don't wait. Too much cortisol wont hurt you but not enough will post op.

Look at some of the signs and symptoms of Adrenal Insufficiency to be able to pay attention to your own body more. Its important. Yesterday I was lucky in so many ways. I want you to really pay attention. I know I will be:)

If you want to contact me please feel free to email me at Cushingscountrygirl@gmail.com or I have a facebook group called "Cushings!!" I will always respond back as soon as I can.

Going to leave you with some pictures of my kids....they still had their Halloween and Football Game with the help of my friends and husband! Thank you so much!!!

my daughter as Jack Skeleton

My youngest as Nypd

Great Tackle from my oldest

My two sons won their football game!

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.

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 :)

My Cushings Journey

Oh where do I begin? Lets start with I didnt even know what Cushings was and lets back track to the beginning....

The day I got diagnosed was my 6th time in the Drs office for Bronchitis that year and I had had walking pneumonia also. I went in and cried to my DR that I am barely eating, gaining weight, I am not sleeping but 2 hours a night and that I feel like I am going crazy and depressed, my body hurts and I am bruising all the time. He looked at me and said, "You have Cushings I bet". I looked back at him and thought is this man crazy? What is Cushings? He looked at my neck and said I had a buffalo hump, looked at my stomach and saw my stretch marks (straie) and looked at my food log and saw I was only eating 1400 calories a day and had gained 80 pounds in 1.5 years and was still gaining. 

NOW LETS GO BACK...

I had a hysterectomy 3 years ago and felt like I had hormone imbalances every since. Actually I felt like I had them before that even, but I always decided that the weight gain, the hair on my chin, the loss of muscle, the bruising, was all because of hormones from the hysterotomy. WELL it WAS from the hormones but not from that. I went to DR after DR after DR and they said my estrogen, testosterone etc was fine. Or they would give me a pill for depression or more estrogen to cure my hot flashes, red face etc. The depression pills never worked for me. I even went to a Dr that gave me more estrogen to take and then had their clinical psychologist call me to see if I wanted to come in to see them and talk because I "had bruising, cried a lot, was 37 and must have a bad home life". That made me so mad!! I wasn't getting beat! I left that clinic and went to another one. It was just meant to be because thats when my MD said to me that I must have Cushings. Look at my Buffalo Hump....

After he said I needed to test he set me up for two tests. An 8am cortisol blood draw and a DEX test. One came back positive and one negative. Then my Dr said well maybe not. By this time I had looked up everything I could on Cushings and started researching. This is also where I saw my co bloggers Vans video on Cushings which to this day she is my rock-star! My Dr referred me to two endocrinologists and they both turned me down. I researched Cushings specialists and decided to go to who I thought was the top endocrinologist at the time Dr. Friedman. He listened to me. I tested a lot!! Tested wrong at first even. Tested when I felt bad and I should of been testing when I felt good (on a high). So at first some of my tests were coming back normal because I would cycle. After learning more and figuring out my symptoms and when to test....they started coming back high, high and high. I went in for a MRI and they saw something that COULD be an tumor. I was scared and relieved at the same time. What a weird feeling to have. My endo saw a tumor on the left side and my neurosurgeon saw one he thought on the right. It was very confusing but  I was finally diagnosed in the beginning of July 2014 and had my surgery scheduled three weeks later in Houston at MD Anderson.

Once I was ready for surgery it could not come fast enough. I wanted to get rid of the tumor and was hopeful to get back to a normal life. By the time my surgery rolled around from the first time I even learned about Cushings my muscle wasting had me only able to lift about 10 pounds. I still wasn't sleeping. I was angry at nights and had so much anxiety that my foot would tap tap tap all the time. I was bruising if someone touched me hard or bumped me and most of all I was depressed because I felt as if my family would do better without me there. I am a mom of four teenagers.....it was hard when I couldn't do things for them. And I felt bad that my husband was really picking up the slack. I didn't even feel like ME anymore:( I wanted ME back. I wanted to ride my horse, shoot my bow, cook dinner and be able to move the pot of spaghetti etc. BUT NOW I HAD THE CHANCE!!

July 25th 2015 I had my surgery.   I was ready to jump up on the table to have my brain tumor removed. I had a calm that day and was prepared for it. My husband by my side and I waved at him and said "see you on the remission side". When out of surgery we were told that they had found TWO tumors that were connected underneath the pituitary and he felt they had gotten everything out. I was relieved.....

On our next blog is the video of a day before to 2 weeks after slideshow of pictures of my surgery. I am now 2.5 months post op and in remission! I take it day by day because recovery is hard and I have to remember that I am not going to be ME in one day! But glimpses of ME are coming more and more! I feel happier, I have lost 23 pounds, I am sleeping every night and all night long, I am not bruising, my brain fog is so much better and I am happy to be on the flip side~! I am still getting better day by day! 

Please feel free to email me at anytime at Cushingscountrygirl@gmail.com or I have a Facebook group called "cushings!!" that you can join for more information and of course check out Vans other blog onedelicateheart.blogspot.com 

 

cushings surgery pituitary

Van's Introduction to Cushing's

Hi guys my name is Van. I am 25 years old living in Houston TX. I got a degree in Fashion Merchandising during the time I was sick with Cushing's Syndrome but now I want to study creative writing. I live with my loving boyfriend (Muffin) and my two adorable pups Vankey and Rascal. I enjoy eating good food, I am a shopaholic, fashionista, and love to travel. I have my own blog called http://onedelicateheart.blogspot.com that blogs about my journey and to raise awareness.

Muffin and I High school sweethearts

Rascal and Vankey

I had cushing's for about 5 years before getting a true diagnosis. Most doctors ignored me because I did not look sick enough or Cushinoid enough due to the fact that I did not have a huge weight gain (though 25lbs is still a whole lot for my frame). Last year my period stopped for a full year and I had extreme cystic acne all over my face and neck. I still had the moonface, insomnia, fatigue, hirsutism, hairloss on the head.. The whole deal. My depression and anxiety became so severe that I wanted to end my life many times. People could not understand what I was going through and doctors ignored me. Finally I had a moment of realization googling my symptoms and WEBMD said Cushing's Syndrome was possible. My boyfriend and I laughed it off because it said "rare disease" so we took WebMD lightly. Still, I felt that I needed to checkout my hormones so I went to see a endocrinologist. After many tests, labs, scans... Last year I was diagnosed with an adrenal tumor. To my horror the doctor said I was pre diabetic and needed to take action immediately. I had surgery (adrenalectomy) which removed my whole right adrenal gland that had the tumor in May 2013. It has been a year and I am still in Recovery which means that I am waiting for my remaining adrenal gland to start producing vital hormones. I take hormone replacement called steroids for the imbalance.

By looking at me I seem to look pretty normal, but I still suffer greatly everyday now that I have Adrenal Insufficiency. I am tired, depressed, and lack appetite. My periods came back and now it is gone again. My symptoms have improved but thing's are not how they use to be. My quality of life has changed greatly. You can read more of it on my blog. It is just part of the rollercoaster we Cushies have to deal with in our journey. Though everybody's journey is different and unique. 

Cushing's has taught me so much and I hope to pay forward what I have learned to the public. Keep reading and we will go into depth in our next few posts. Our main goal is educate people on how complex Cushing's can be. Also that one day the world will understand what this mystery Cushing's is all about and people can be treated and cured before it takes away too much of their life.

When I met Rae, we immediately were on the same wavelength. Mostly by the fact that she already recognized me by my videos on youtube and she is such a genuine and sweet person. The interesting thing is how we both suffer from Cushing's however we have opposite symptoms.. as you can see in our "during" photos we look quite different with our appearance and symptoms. We will make a chart and compare our different symptoms. It just proves to show that you cannot judge a cushing's patient by their appearance. I hope that this blog will be useful for other cushies like me or Rae. We will continue to advocate for Cushing's and will be 2cushies for life. :)


Here are my videos please watch fully on youtube to see the captions and comments. Please like and share if you think you may have cushing's or share to someone you know. Thanks for reading! Let's get this started Rae!!

 

Cushing's Video Part 1

 

Cushing's Video Part 2 (recovery)

 

                                          My acne Video