Getting Diagnosed....My Tips

As some of you know getting Diagnosed with Cushing's isn't always the easiest thing. A lot of people struggle with that because Doctors dismiss the symptoms of try and treat them individually. I went to numerous Doctors for years thinking I had hormone problems from my hysterectomy  at a young age of 34. I was treated for weight, treated for anxiety, treated for high blood pressure, treated for hot flashed, treated for bruising etc etc etc. It wasn't until I found a Doctor that told me I think you have Cushing's that I started the road to get treated for them all and not individually. These are my personal tips. I am not a Doctor but this is what I have learned a long the way. If you are reading this you already know or think you have Cushing's so I hope this helps you.

Tips:

• Doctors listen to the first few symptoms first. I personally tell people to start out with the Cushing's Symptoms that you have that are more Cushingoid. For instance if you have weight gain, buffalo hump, moon face, straie, bruising, depressed, and anxiety. You should tell the Doctor first about your buffalo hump, moon face, straie, bruising and leave weight gain and depression to the end. I know most of us say weight gain first or depression but those really should be at the end so the Doctors don't try and treat you for that and don't listen to the rest.
• Bring Before and After pictures to your doctor. Also a food log so you don't get the well you must be eating too much bit. Its helpful for others to see the difference. They don't know what you looked like before. You don't have to be big to have Cushing's either. My good friend Van who has a blog at www.onedelicateheart.blogspot.com isn't a big person at all. She is one of the founders of this blog also. Van is in remission from Cushing's. You can have different symptoms.
• You don't have to have all the symptoms to have Cushing's. I would doubt myself a lot actually because it seemed weird that I would have this disease. One thing my husband said to me was "Name something else that would have all these symptoms and come back to me". I couldn't. Maybe its a good thing to ask your doctor too. Mind you I am in remission now and had two tumors removed. I went through my doubts too though.
• Join groups like Cushings!! on Facebook or search out blogs or sites of others who have experienced this. Learn from them and others. Get the support you need because it is out there.
• If you are struggling with money for medical bills or going to the right doctor contact NORD. National Organization of Rare Diseases. They are an amazing organization who helps so many. They will help pay for your doctor bills, your hotel or flights, MRI etc. until you get Diagnosed. www.http://rarediseases.org/
• There are a lot of websites out there. One of my favorites is www.cushings-help.org which has been around for almost 14 years. It has so much knowledge. My other favorite site is www.cushingstories.com because it has personal stories of those with Cushing's at all different stages. They also have blogs to follow and Videos of Cushies. If you look at some of the stories at the end of that page is also more Videos of that particular person.
• Test....Test....Test.... keep testing. One or two tests that are normal doesn't mean you don't have Cushing's. Have your doctor give you 24 hour urine tests, Saliva's, Midnight Serums of Cortisol, Dex test, Atch tests. Remember most Cushing's patients are up at night and tired in the morning. Our Cortisol is higher at night than a normal person and can be low in the morning hence the Midnight Serums. Test, Test, Test. Don't give up! I had over half normal and half highs because I was cyclical. Check out www.cushingstories.com Facts section on when to test. It could make all the difference.
• A lot of Doctors hear that they will never meet someone who has Cushings that it is too Rare. If you feel you have it please keep seeing Doctors until they test you and do MRI or Scans. Cushing's only gets worse with time. Be your own advocate. There ARE Cushing Specialist Doctors out there. Who will listen to you. If you think you cant afford to go there (NORD can help) just remember that it is worth it to getting to the other side of this. Personally I had to say to myself its worth it to go to a specialist than waste my time and energy and money on endo after endo. Two endos wouldn't even see me because I had a normal test. I went to a Cushing specialist and found my tumor, got diagnosed, had surgery and now am in remission getting better by the day. That was worth it to me!

These are just a few tips from me. There are many more out there but these ones are the ones that were important to me. I hope that it helps. If you ever want to talk to me please feel free to comment or write me personally at Cushingscountrygirl@gmail.com

Cushings Symptoms

Today maybe April Fools Day but Cushing's is no joke! I entered the 30 day Challenge to Blog for the Month of April everyday about Cushing's to help educate and help advocate for Cushing's. Its about Awareness. I had never even heard of Cushing's till I was Diagnosed even though I had gone to many doctors before. If I were to have known about it I am sure I would of been diagnosed earlier and saved a lot of symptoms and heart ache. This is my hope for others. That they get diagnosed at the Earlier stages rather than suffering and having to fight for a diagnoses.

I want to talk about the Symptoms of Cushing's because that is where it starts of course. To have Cushing's you don't have to have all of these Symptoms either. For instance I was Diagnosed, had my tumor removed, and now am in Remission but I only had 18 out of 22 of these symptoms.  That was by Surgery Date when things had gotten worse.

Symptoms of Cushing's:

• High Blood Pressure
• Diabetes
• Round Face
• Fat pad behind neck (Buffalo Hump)
• Thin arms and legs compared to Stomach
• Acne
• Fatigue
• Weight Gain especially upper body
• Depression and Anxiety
• Osteoporosis
• Insomnia
• Irregular Periods
• Low or No Sex Drive
• Thin Skin
• Slow Healing
• Low Immune System
• Pink or Purple Stretch Marks
• Easy Bruising
• Mood Changes
• Hypertension
• Hirsutism
• Thinning of Hair

If you think you have Cushing's or are in the process of being diagnosed remember there are a lot of places to go to get educated on it, see others stories or be with others for support. I will tell you some of my favorite sites. We want to support you! Tomorrow I will write the different ways you can have Cushing's. If you ever need anything please feel free to email me at Cushingscountrygirl@gmail.com and I will respond as soon as possible. I always respond though! Here are some of those sites.

www.cushings-help.org which has a variety of help and has been around for over a decade.
www.cushingstories.com which has stories, blogs and videos of Cushing's Patients
Cushing's!! is a group I have for Cushing's patients or those who think they might have Cushing's on Facebook.
Battleground Diagnosis is also on Facebook on Fact vs Fiction of Cushing's.

Check some of those out please. The more support we give one another the better!

5 Things Every Person Living with a Rare Disease Understands

I am really excited to share this article to you all!! It has my good friend, blogger and Co founder of our site Cushingstories.com in it! They feature quotes from the both of us. I am so proud that Novartis is taking the time to really talk about Cushing's and Advocating for it. Rachel and I both have Cushing's and really want ppl to understand it. This is just the beginning! Novartis is making great strides in getting awareness out there for our disease and many other Rare Diseases also. Please check out the article! #RDD2015 #GetLoud #Raredisease #Cushing's

http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands

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

NEW CUSHINGS WEBSITE

I would like to tell you all about the new Cushing's Website. It was made by a good friend of mine Rachel Wilson and I. When I first found out about Cushing's I didn't know where to look for Videos, Blogs and Stories of others. This website has it all!!!! It just got launched today after 4 months of working on it! Please share with others......you never know who it will help out!

www.cushingstories.com

Thank you to all of you who submitted stories, videos or your blogs to help others. Without you we couldn't of done this!

Love, Rae

Cushings Blogs of friends of mine!

Its always good to see a story or be able to relate to someone. I wanted to share just a couple of friends who said I could share their sites for others to see. These are all Cushies that are on my facebook group called "Cushings!!" please feel free to join at anytime! These are not in order but thought it would be good for you to have a couple to look at:)

Health in Sickness By Van   http://onedelicateheart.blogspot.com/

Living with Cushings By Rachel  http://cushieworld.wordpress.com/

Livehard.livestrong by Nicole  http://cushiequeen.blogspot.com/

My life as a girl with Cushings By Tiffany  http://www.youngcushie.blogspot.com/

Cushings with Moxie by Moxie   http://cushingsmoxie.blogspot.com/


Muskeg Farm by Catherine  http://muskegfarm.blogspot.com/


and of course this blog that Van and I started to show you the difference between two Cushies:). These are just a few of many blogs that really have the journey and story of cushings. These ladies are all fantastic. Its not easy to put your life out there.....but its worth it if you can help one person or many!

My good friend Rachel and I are working also on a Cushingstories.com website. We would love to be able to put on your videos or stories onto our site for more ppl to see. Please comment below or email me at Cushingscountrygirl@gmail.com so we can add it to the site. It will be up and running in a few weeks. Just need link to your video or blog so we can share it with the world.....Thank you in advance! We just want to advocate and get Cushings known by more.

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.

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!!!

Yes I am a Cushie Mom

 

Christmas 2012

I am a mom of four teenagers and I am a Cushings Mom. I don't know which one is more exciting to read about so I will write about both :) I have a blended family which makes it so our teenagers are very close in age.We have been a family for almost 7 years now and I am very blessed that they get along so well!! Jackson is my oldest, 9 months later is Cassie, 18 months later is Joshua and then only 2 months later is Jason. They are my world! I joke with ppl in our community however  that next year I am moving to India so my husband will be left home with a 9,10,11, and 12 grader:) With being in a very small community you become very active in their school lives. Just today I have a football game to go to for two of them, a bake sale for one of them and a dinner to serve for another one of them. Its a busy busy life.

Josh & Jackson playing football

200 cupcakes made for a game

I have always been a very busy person who wanted to volunteer and help in anyway I could at the kids schools or for their sports or clubs. But the year before I had my surgery was VERY tough. It was hard to do any of that and I started to stay in more and more. I never knew when I would be sick. I started to feel like someone who would sign up for something to help and then feel like a flake because that day I would feel horrible. I never knew when I would sleep or not sleep. I started to feel as if I was losing myself. The sad part was my kids started to notice too. I would still do their bake sale but I would go get pre made things. I would still attend their games but I was gone right after it was over and in so much pain from sitting. I did it because I loved them. I pushed myself to do it. I would go to a game though whether it was football, volleyball, basketball or baseball for them and it would take me days to recover from that. I was sore. I couldn't sleep. I had a hard time getting in and out of our truck. I felt like I was failing as a mother. I would cry at night to my husband how I had lost myself and how they are going to grow up just seeing someone who was sick. They were helping me out more than I was helping them I felt. It was hard.....really hard! I am not going to lie....I cried a lot about how I wanted to be a better mom, a stronger mom for them. Thats when my husband had to step in a lot and help me. He had to become my superman....

He had to work and sometimes come home and cook meals, drive the kids to school functions or just help with chores at our ranch. I went from cooking from scratch to doing more premade stuff. And guess what! That was okay. My kids still loved it, they still grew and they still had good meals. I had to learn that doing things in a simple way was ok to do! It was! I didnt have to be perfect!I just had to be there for my kids. Talk to them, love on them, be with them. We did more movie nights at home together with fresh popcorn and we did more game nights.  I was blessed they were teenagers and could comprehend more of what was going on. It had its positive points and its negatives. I think it scared them more because they are at the age where they could go and research on their own or worry because they heard the word "tumor". A hard moment in my life was when my daughter gave me a bday painting (4 months before my surgery) and on the back she wrote this....

 It says..."Dear Mother, I created this painting because of your influences. You are Gods child just like many people. this was made because you will always be protected and of course you will be painting in watercolors. I hope that every time you see this, you will be safe, happy, healthy, and just in a good mood! This paper is being watched over by many angels, one of them is your own beautiful mother. I HOPE that by the third time you read this to yourself, you will be cured of cushings. That disease is crucial to leave because you cant do many things because of it. i hope that you will live the life that you have always wanted and that it goes in your direction. And guess what? In the middle of this ninja our dog just threw up. Hope my day gets better as well! (this part cracked me up folks!). So I hope, want, you will become a beautiful person that you have always wanted to be. Okay, even though you already are beautiful inside and out! love Cassandra. always praying".  Now tell me that wouldn't make you cry! 

My kids are all crazy and like to have fun like me! I am now 2.5 months post op and am getting my life back slowly! I love to cook and bake and am back to doing that daily. Even started canning! I went from only being able to lift 10 pounds to lifting 30plus now. I am losing weight, I am in a MUCH better place attitude wise and WANT to be around ppl again! I had hope! I had to fight to get here but I did it! It was worth it to me! I am enjoying my kids more and more. Not that I ever really stopped, I just was in a different place. Even my kids notice the changes and Cassie knows her prayers were answered.Here are some fun pictures of us in the last couple weeks....Things can change! I am living proof! We just need to have a good support system out there and if you dont have one at home....you can find them online! There are great Cushings groups on Facebook....I even started one myself called "Cushings!!" And there are great sites like Cushings-help.com where you can find tons of resources. If you ever need someone to talk to even please feel free to email me at Cushingscountrygirl@gmail.com and I will always respond!

Jason and I

My daughter Cassie

Jackson going hunting

Joshua and I

How this blog came to be....

I thought it would be good to tell you how Van and I got together to do this blog and why it is so important to us:) This is my side of the story:) 

 I got an email from Novartis Pharmaceutical Corporation asking me to come to a conference in New Jersey. This meeting would be called Cushings Disease Online Influence Advisory Board meeting. I had to really think and pray about going to this as I was only 2 months post op when I received the email. After many phone conversations with Nicole Riley the Director of Public Relations I decided this was the experience I needed. I want to help other Cushies like myself and if I could help a company that has the means to help the masses.....I wanted to help them. 


2 weeks later I was on a plane from California to New Jersey with my best friend (cant really travel alone yet as I cant pick up my luggage lol and am only 2 months post op).

I left my husband to tend to our Four ...yes four teenagers. He was all for me going to find out information and to tell my story. Do you feel bad for him? hehe....P.s he did great as usual!

The first night there we were to have a dinner to get to know the other Cushies that were there and meet the staff of the Novartis group. I swear I was the last person to show up at the dinner and as I sat down..............there she was! :) It was Van!! I recognized her right away because when I first diagnosed I went crazy on You tube looking at before and afters and she was the first video I ever watched. She was like my lil rock star. I leaned over to my BFF and said..."I am going to tell her what she means to me". Later during dinner I had my chance. I spoke up (a lot because I am a talker) and told her how she influenced me so much and how I was so happy to meet her. From that moment on I knew we would be friends. **** I swear I am not a stalker hahaha****

The next day was the conference. We learned a lot. We learned about how to get our stories out there more and the facets that we could do. 7 Cushies and Novartis staff talked about how to get the general public to know more about this rare disease. We talked a little about our journeys. We talked about the drug Signifor that we learned was for those who couldnt have surgery or wanted to lower their cortisol until they could have surgery. It was nice to know their were more than one option. Especially for me because my tumors were so close to the carotid arteries the Dr's weren't sure we would be able to do the surgery. Most of all though we talked about being advocates, getting information out there. The right information. the other Cushies were amazing and I was so thrilled to meet them! Rachel Wilson and Mary O were some of the Cushies we met that are instrumental in Advocating Cushings as well!

Novartis Team and Cushings Patients 2014

Later that day Van and I were able to talk. We talked about how our symptoms were different, how our diagnosis went and how we are doing on remission. We talked about trials and tribulations. We talked about weening from cortisol after surgery. We talked about a lot. But mostly we talked about how we want to help others and how even if we just reach one person and are able to get them to diagnosis then we would be excited.

The conference ended. Novartis did an amazing job. Really helped us in knowing how to reach the public. Van was found through her other blog and I was found through my Youtube videos. We knew though that we could do more. I called Van when I got back to California. I am sure she thought I was crazy lol. Told her I thought it would be great to have a blog with the two of us because we have such different symptoms and journeys. I was afraid she would say no because I had never done a blog before. I told her to think about it and get back to me. It didnt take long! She is amazing and so sweet! The first text I got back was an idea on the name of the blog. Thats when 2cushiegirls began! All from a meeting of two ppl at a Cushings event. I cannot express how glad I am that I decided to go!

2cushiegirls

 Now you can find us through blogs (this one and Vans http://onedelicateheart.blogspot.com 
and my Facebook group cushingscountrygirl@groups.facebook.com. Dont forget we also have Youtube pages...Rae Collins and Onedelicateheart. Now we have also put ourselves out there on Pinterest, Instagram and Twitter. Thank you to the Novartis Group for really helping us to want to help others using our own Journeys!! If you are a Cushie....we would love to hear your story also. Its all about getting our journeys knows and all about information so maybe we all can help just one person! 

Disclaimer: Novartis paid for our trip, meals and lodging while at the Conference.

#raredisease, #cushings, #novartis, #signafor, #2cushiegirls, #symptoms