My Feature Story On Cushing's Support and Research Foundation

I will frame this!

So I received my spring Cushing's support and research foundation (csrf) in the mail. I was so excited to read it. Inside has a lot of interesting new research on the disease and doctors answers for questions people want to know about Cushings. I thought I knew all about it through my own research and experience but it had alot of answers and information I did not know. It also talks about cyclical cushing's which is harder to diagnose and alot of people have been emailing me about why they have all the symptoms and features of cushing's but their test are never positive. So I think that we always have to prepare for other possibilities. I am not a doctor to say whether you have it or not but I do encourage anyone to find a professional to investigate to why they aren't feeling "normal". Also the newsletter features patients stories.

Well I read this newsletter a few times and not once did I realize my story was featured inside the newsletter until a cushie emailed me saying they saw my story! Wow, I feel so honored to be chosen to share my story to csrf readers. My feature page was stuck together so I had no idea it existed but thank you Benji for informing me! I hope you are feeling better these days. I want to thank CSRF, cushies, and supporters. To help me through hard times and to share my story for awareness. You guys are everything.

Stress is not the cause of Cushing's. Having Cushing's causes stress.
 But it sure will feel worse if you're in a stressful situation!

Most Cushies suffer from bad memory, I still do.

YouTube Videos

So I am still not feeling well since the flu last week. I feel like I am getting sick all over again if that is even possible. I guess I will repost my youtube video here. The discussion on my video is more than I could ever imagine. I thought I would identify with very few people but so far the feedback is amazing. I want to thank you guys for sharing and supporting the cause for awareness. PS if you want to see the captions you gotta watch it on youtube or fullscreen. I'm still trying to figure out how to fit the whole caption but I think people get the idea lol.

The Meaning of It ALL..

When I was going through my darkest days, I questioned my will to live. Nobody should suffer that way in any lifetime. I felt a heavy heart and and nothing I did felt right. I had no one that understood the conflict and pain that was going on in me. Throughout the whole process of getting slowly sicker, getting rejected from doctors, friends and family, finding an endo, going through the tests, labs and scans, having surgery, then waiting for recovery--- It felt like it was too much to handle. I felt weak. People told me that I must be strong to still be holding on but I felt like any moment I would let myself slip away and find peace with God.

After all of the suffering, I did not know what I suffered for. Until this happened....

 

 ^sorry I couldn't get the whole message! But I replied to your recent email today!! Stay strong <3

 ^ When I started getting emails, messages, and comments from people (I am keeping their indentity anonymous) who are in the same position I was a few years back. These people are suffering, falling apart, and are on the brink of breaking. They need an answer to it all. That is when I realize my purpose of  all the suffering was to be here for these people, write this blog and tell them, I understand what they are going through. And am the example for them to know that if they hold on, they WILL be okay. These past few months have been getting better. and everyday I am getting stronger inside and out. I never knew how weak I was until I realized how much strength I do have now. If that makes any sense! lol. The weakness, suffering and pain is somehow becoming the strength I have within myself now. I just want to thank again to the recovered women who told me I will be okay. I remember life felt so pointless. My hair was falling out, my face was full of cystic pimples and scars, my face looked like a heavy saggy mask, my body was swollen. I felt like I would never get back to the way I use to look. But the amazing thing is that, I feel more beautiful than ever now than  before. I don't know how it is possible after going through hypercortolism. Maybe it took all of this for me to find strength and self love. I want to thank you for all the people who have reached out to me. And thankyou for reading my blog. If it weren't for you, I wouldn't know the meaning of it all and finding the peace inside myself. So please stay strong and I will be there whenever you guys need an ear, a prayer, or an answer or anything. <3

Here are some links for when you want to read more about other patient's stories and you can contact the recovered patients:

http://csrf.net/living-with-cushings/patient-stories/

http://www.cushings-help.com/toc.htm 

http://cushings.invisionzone.com/ 

Falling In Too Deep

During the days of my full blown Cushing's, I was really down. I'm talking about random crying spells, panicky feelings, suicidal thoughts, loss of hope, feelings of guilt and shame etc... I guess you can call that the depression that comes with the illness but it is not a regular feeling of sadness that eventually passes.. It's the kind that gets deeper and deeper and all the while you feel so low in your head, you're fighting the cognitive, emotional, mental, physical symptoms that haunts you 24/hrs a day. It's like I couldn't go out and enjoy life when everything would make it worse, even laying in bed.. It's impossible to escape the sickness. I myself was always a happy person but slowly I started to fall deeper and deeper since I was around 19 or 20 I would say I started to feel little glimpses of this darkness. During that time I would say the suicidal thoughts were not morbid but it was just a way of wanting some peace and control in my life. I wanted all the symptoms to stop but there was no way to. Medications, diet, exercise, loved ones, happy thoughts could not fix it. Nobody in my life seemed to understand.... I couldn't bear living with it anymore. The only way I thought was to put myself in a very deep sleep. The kind where I don't wake up.

I was sad and isolated from my own illness... Luckily I found a Cushing's Support group that had a list of Cushing's patients pituitary and adrenal from  all over the U.S. that listed their phone and email. Desperate for any kind of answer, I emailed all the adrenal cushing's patients for help. I asked them how they dealt with their Cushing's and recovery. I also asked them about symptoms and how to cope with everything. I pretty much had all the symptoms like they listed except some are more prevalent than others. All of the women I talked to understood exactly how I was feeling. They told me things will get better once I get the surgery and my remaining adrenal gland will start producing what it needs. They all were honest that the recovery is sometimes even worse but I just need to take my time and push through because there is a light at the end of the very long tunnel. I just want to thank all of the ladies that helped me through those hard times. I am feeling like I am at the middle of the tunnel now and am feeling better today.

I want to say that after surgery, tapering replacement too low can make you feel extremely low too. About three weeks ago I was feeling that sadness again from tapering and PMS. Luckily I talked with a Cushing's patient Marian who connected me to a girl named Jess who was about the same age as me who had her surgery a few years back. We talked several times and she is happy and healthy going to College now. I was feeling sad that I am still adrenal insufficient, puffy-ish, and guilty that i'm not strong enough to deal with a lot. Stress just makes me so exhausted. She told me not to worry because she felt the exact same way and what I need to do was not push myself and to take a break until I start to feel stronger. I also have been seeing a wonderful Nun who talks me through whatever I am feeling. She gave me some wonderful advice that I want to share with you all she said, "this is the time to take a break and find your peace. Love yourself and let God handle everything else. God wants to help you heal but you cannot heal if you do not give yourself time to. Most people do not make the time to make peace with themselves. So see that this recovery time is to give it all to him, the pain, symptoms and you will have peace." eversince speaking to these women I have felt like a huge weight lifted off my shoulders and my days have been brighter eversince. Thank you everyone! This is great advice for anyone sick or healthy. I am starting to feel some peace and control again. I am not fully there yet but I am glad I am feeling awake and somewhat snapped out of the living nightmare called Cushing's.

There's not much but to wait it out during diagnosis, surgery, and recovery but here's a helpful link:
How to Cope with Cushing Syndrome or Disease

Patience and support

Well another week of not feeling alive but merely waiting. On Wednesday we went to see the doctors at the endocrinology clinic. My endo referred me to them to help expedite the surgery. When we got there, many doctors came into the room and examined me like I was a new species or alien lol. They kept coming in and out and told me it's rare for them to see an adrenal tumor cushing's patient and each one of them asked if they can examine me. I found it amusing so I let them poke and pinch me. This one lady kept pinching my cheeks haha. She told me "remember the depression you're feeling is not you but the cushing's, keep that perspective!" The good news is they will request for urgent surgery. The bad news is there is only one specialist endocrine surgeon on staff who was not there so they are referring me to go see him sometime next week. They also ordered more tests. Sighh more Lab testing and waiting... At this point I just feel like i'm at the end of the race but I cannot get enough steam to pass the finish line.

Then I was looking at the Cushing's book they gave me and all the symptoms listed I'm going to rate the symptoms (1-10) of what i'm experiencing:

• Fatigue -9 (hell yeah)
• Muscle weakness -7
• Depression -6
• Anxiety -10 (yup)
• irritability -7
• Loss of emotional control -6
• Cognitive difficulties -9 (like a goldfish)
• Poor short term memory -9
• New or worsened high blood pressure -8
• Glucose intolerance that may lead to diabetes -7 (pre diabetic)
• Headache -8 (24/7)
• Bone loss, leading to fractures over time -8
• Thicker or more visible body and facial hair (hirsutism) -6
• Balding -0
• Irregular or absent menstrual periods -10 (since I was 17)
• Weight gain in the face (moon face) -8 (chipmunk status)
• and between the shoulders (buffalo hump) -0
• Upper body obesity and thin arms and legs -5 (gained 10 lbs in 6 months)
• Pink or purple stretch marks -0
• Thinning, fragile skin that bruises easily -8
• Slow healing of cuts, insect bites and infections -8
• Acne -8
• Increased thirst and urination -10

Yep that's the wonderful gifts all wrapped up into this condition. The symptoms come on rapidly so everyday I struggle with finding balance and controlling what I can and cannot do. The mental disturbances are the worst and I find the anxiety very challenging to control. For now I try to find the "happy" in my day to fight off this stupid syndrome. I count my blessings and remember what people tell me, that this is only temporary and very much reversible and I am lucky my tumor is on the adrenals rather than pituitary. I'll try to be patient as much as I can and know that everything happens for a reason. I am thankful for the people who are supportive and making me feel loved through this process. I don't think I would make it through this time without my support system. The other day I woke up to a sentimental text from my SO that made emotional.

Muffin has been so supportive and loving than I could ever imagine during this time. To know that he will stick by me through sickness and love me at my worst is a sure validation of our relationship. There are stories of husbands leaving their wives because they could not handle their wives cushing's manifestations and that is the saddest thing. I can't even imagine the hurt, especially with the deep depressions one can experience. To leave when someone needs you the most is heartbreaking and those type of men who try to take the easy way out deserve to go to zombie hell. They will regret that very much one day and their recovered wives will have moved on, happy, out living their brand new lives. There was more I wanted to blog about but I forgot. Alright I think I'm done for today my brain is tired. Here's to patience and support.

LOVE love yourself

I recently talked to some women who have recovered from Cushing's and they have been so helpful with giving me insight on how to be a Cushie and how to recover from it. So thank you ladies. One thing that struck out is that all of them told me I need to love myself more in order to have a good recovery. For some reason, most Cushie's blame themselves for becoming this way including myself. I spoke with a lady named Julie and she said "I think the most important thing I want to tell you is to not beat yourself up over what has happened.  Cushings is a medical problem.  You did nothing to deserve it; it just happened.  You will recover but the process will be slow.  You must be very kind to yourself as you recover.  You must surround yourself with people who love and support you." Thank you so much for telling me that Julie. 

So far my symptoms are somewhat under control besides the muscle and joint pains. My awesome doc prescribed some beta blockers that has been helping the anxiety feeling and rapid heart beat. My lovely boyfriend has been giving me massages at night so It helps plus I try not to be on my feet for longer than thirty minutes. Also My wonderful sister has been coming over to help with whatever I need to do in the day time. The memory loss and lack of focus is an issue but oh well I prefer not to remember much these days anyways lol. Before knowing about my condition I thought all these symptoms were due to me getting older and use to joke about it but truly feel like a senior citizen now lol.  Another helpful advice I got was to not fight it and get frustrated but rather have acceptance that some things I simply cannot do I don't have control over and it is okay. it's just temporary. It's okay to have others do things for you in the mean time. For the longest I have been pushing myself to work, study, drive, cook, clean, run errands, going out with friends or seeing family. Seeing friends and family is the worst because they have so much expectations and for some reason they want to be too involved suggesting too many things but hearing all their assumptions of "oh you must feel this way" "oh you need to do this and that" is not very helpful because they have no idea the mental aspect of this syndrome. Yes online there are lists of what a cushing's patients physical symptoms are but there should be a long list of the mental, cognitive, emotional signs and symptoms. I no longer have the energy to explain to people what goes on in my brain of how this syndrome causes me to feel. That I can only be around certain people who are with me 24/7 or from day one who do not trigger my panick attacks since they understand how to handle it. I now have to limit conversations with my mom. I know with family it's from a place of sympathy and love and I love them to death but for a cushie, it just feels overwhelming... All the women i've spoken to told me the fastest thing that recovers after surgery is that their state of mind changed instantly and the anxiety was gone. So I look forward to having that normal feeling back. whatever "normal" is since I thought all of these feelings were normal but they aren't.

 I've always given in to expectations of others and myself because I don't want to lose control over what I can and cannot do but I think It's time for me to know my limits and see it as a step to loving myself more. I found some videos and other fellow recovering cushie's that's been so instrumental to me.

- sharmyn's story youtube
-Steph's picture timeline
-Cushing's disease, moods, bi-polar youtube
-puremoonlite's recovery youtube