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In Memory ~ Sarah Fraik

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in-memory

 

Sarah recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease.  She died on June 13, 2011 after a brief illness at the age of 28.

More information will be provided when it becomes available.

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Sarah F’s mom posted this: “we will be setting up an account at the royal bank tomorrow afternoon for sarah. we are planning on having a bench put in her name at transfer beach in ladysmith after we get her home. if you would like to help you can make a donation instead of sending flowers. we will post when we have everything set up. thank you everyone for your support and kind words for sarah…..”

Also from Sarah’s mom: “a account is set up for sarah fraik at any royal bank the number is 02000 5000823 any donation is welcome to help with bringing sarah home and getting a bench with her name put on it at transfer beach ladysmith thanks everyone.”

Beth Grant writes: “I already have asked her about how people from out of the country can donate and I’m still waiting to hear back. But my offer also stands to have people paypal me or send cheques and I can just go to the bank here and deposit it to the account. There’s an option to Send Money, so you just click on a few things and it gets sent. I’ve sent and received through paypal many times and never had trouble.”

Conversion from US to CAN: http://www.advfn.com/currency-converter/us-to-canadian-dollar.html

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From the Acromegaly Community:

Taking a Lesson From a Tragic Loss

on Wednesday, June 15, 2011. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

Last night I was at an open-air concert; and while waiting for the show to start, I was unexpectedly faced with mortality.  Everyone at the show was fine, but when I was reading social networking posts, I kept reading people’s messages of peaceful rest to a woman I didn’t know; but I could totally relate to her struggles with a rare disease.  Sarah, a young woman dealing with the effects of Cushings Syndrome, passed away from a head cold- a medical complication at the ripe old age of 28.  I didn’t need to know Sarah to know that this was just wrong!

Based on what I have read from many of Sarah’s friends, I got a brief snapshot of the situation.  Not only was she a very special woman that many people loved, her passing was made more tragic because maybe it was avoidable.  It seems that several people were concerned that the quality of her medical care was at least partly to blame for her early passing.  Now I did not know Sarah or her issues to agree or disagree, but it brings up a really important topic of discussion for the rest of us: what is a good relationship with your medical professional?  For those who are unfamiliar, Cushings Syndrome is a hormonal disease that impacts people who have a consistently high exposure to cortisol (a hormone released into the body as a response to stress).  I have had cause to learn a lot about Cushings because of the number of Acromegaly patients who have to juggle the effects of both diseases.

While I know this discussion can be uncomfortable, I would like for you to ask yourself honestly: DO YOU TRUST YOUR MEDICAL PROFESSIONAL?  Please understand the question I am asking is different than whether you like your doctor.  While it is nice if you like your doctor, it is not as critically important that you like your doctor, as it is that you trust him or her.  I promise you that I am not golfing buddies with any of my medical professionals; but… I am confident that they are providing me with the best possible medical care I could ask for, without my traveling to a dozen other cities.  Ultimately, this is an essential question you need to answer for yourself because your answer can directly impact the quality of your health care, and therefore the length and quality of your overall life.

Now does trusting your doctor mean they know everything there is to know about all things medical?  NO!  Just because you trust your doctor or nurse does not guarantee that they know everything about every disease you may ever have.  Willingness to learn accentuates, not lessens a doctor’s credentials as a diagnostician.  Many of us have had cause to teach our doctors something about our disease not covered in the textbooks yet.  When I was growing up, I knew a doctor’s wife who used to love to joke that ‘that’s why it’s called practicing medicine.  They have to keep trying till they get it right.’  It is impossible for any one medical professional to know everything about everything.  The question you need to answer for yourself is whether you trust them to listen to what you say and help you to make your life more pleasant, because of or in spite of your medical situation.

Sadly, for some of us, our medical issues are not a joke but a depressing reality- that we have to go years before we find the right medical professional who can both treat us medically AND handle our personalities in a way that will help us to trust our doctor/nurse/physician assistant.

Now, if it is true that the doc is merely practicing, why is our trusting them so essential to the relationship?  That is simple.  Honesty.  If you are anything like me, you would rather go to a medical office than a psychic for your medical care.  If you are withholding from your doctor, for any reason, you are detracting from your own medical care – and making it nearly impossible for your doctor to properly treat you!  I am not saying you should call your doctor’s office because you stubbed your toe getting into bed last night and your nail is bruised in the morning, but if you stubbed your toe last night and you were in so much pain that you woke up and took seventeen aspirin, this is an issue worthy of a chat.  Your medical professionals need to understand who you are, how you feel, what your pain threshold is, and how you manage your medical issues when he or she is not around (yes, this means your OTC treatments AND if some of your self-treatments do not necessarily come from recognized pharmacies- while this may be an awkward conversation and you may get scolded, such decisions by you can effect your treatment too!).  Medical professionals and their patients must know they can trust each other.

Ultimately, we are the patients- its kind of like being the customer at a store.  If you want to do hours of research before you buy the best can opener, or if you want to consistently look over your doctor’s shoulder, that is your right; but ultimately you need to have faith in the purchase you make at the store, just as you need to have faith in your doctor’s course of treatment.  If you do not feel comfortable enough doing that, then you have a decision to make: is your lack of trust in the doctor their fault, or is it yours (as the patient)?  Again, not an easy question to honestly answer, but essential in our long-term well-being!  If you have been withholding too much from the doctor, waiting for the doc to miraculously figure out what’s wrong seems both unlikely and unfair- and largely a mess of your own doing.  Going to another doctor is simply going to slow your treatment, and likely perpetuate the problem.  It is not the doctor’s fault that you are not honest with them about your issues.  Open up with your doctor and have a frank discussion- see where things go from there.  But if you are honest with your doctor, and you still feel like the doctor is either uninterested, unable or unwilling to figure out your issues, or is flat out too busy to give you the focus you require and deserve, well then you need to look at possibly seeking a new medical professional.

Just remember, starting with a new doc can be difficult.  If he or she is popular, you might wait at least a month or two just to get that first appointment where no treatment might legitimately get started. During this time that you wait, your issues are not being treated at all.  On top of that, you and your new doc both need to figure each other out, and again you need to try to build that trust and understanding with a new doctor and staff, working toward a momentum of medical stability.  All that being said, if you are not happy, and are ready for the switch, then go for it!  Remember, you are most responsible for your own medical care, since you are the person most greatly invested in your own well-being!  Don’t stay with a doctor simply because you are afraid to leave.  If you are ready to move on to a new doctor’s office, just make sure you are doing it for the best reasons.  Hopefully your new doctor’s office will offer you the ability to trust and be totally forthright.

I am just saying that if you are dealing with some sort of extraordinary medical condition, please invest your time to be totally honest with your physician(s).  Talk with him or her in a frank and honest way.  If your disease has major issues that are kind of sensitive to talk about, and you are afraid to talk face-to-face with your doctor but feel you can be more frank with the nurse or physician assistant, then do that!  If the issue is particularly awkward for you, then at the very least, keep a journal and share that with your doctor’s office.  At least the information is being conveyed.  While there are preferred methods of sharing, getting the information is more essential than the method of delivery.

I don’t know what the facts are that surround Sarah’s case, but it is a tragedy any time a 20-something person passes away.  Don’t let her passing be for nothing.  We can learn from her.  Take care of yourself medically, and work to foster a relationship of openness and trust with your medical professionals.  Without trusting our medical professionals, how can we expect them to treat us in a way to actually improve our health?  And at the end of the day, what is more important than our health?  Dare I say it… nothing.

Summer J (Summer84), Pituitary Bio

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Hello my name is summer

When I turn 30 I started having a lot of health problems by my 31st birthday I had a kidney stone that was the size of a cherry pit. After having multiple lipotripsy used to have that kidney stone removed the doctor insisted that I go and see a primary physician, by that time I haven’t seen a doctor in quite some time I have been treated for severe pain and all they would tell me they could make me comfortable but that they could not do anything for me so I stopped going.

My first doctor’s appointment with my new primary physician she asked me why it had been so long since I’ve seen a doctor and I told her that I was scared she told me that there was nothing to be scared about within three months of my first appointment she told me that she thought I had Cushing’s and that we needed to figure out if it was syndrome or disease.

She sent me to a endocrinologist and the first thing he told me was nobody has Cushing’s don’t worry about it the in endocrionologist apologized one month later and referred me to University of California San Francisco. The endocrinologist department at the University was able to discover that it was Cushing’s Disease after taking blood from my pituitary gland , I was introduced to the neurosurgery department and we scheduled my surgery my tumor was removed 1-24-17 . I was giving steroids and an appointment the following month as I reduced my steroid use I got sicker and sicker and ended up in the hospital unable to make it to my doctor’s appointment.

Unfortunately I was not prescribed anymore steroids. When I was finally well enough to make the journey to my doctors they realize their mistake apologized and changed their policies unfortunately during that year I was very sick in and out of the ICU. Neurosurgeon and my new endocrinologist were very surprised that I was able to survive not having any support. They had mentioned that they believe I had a very high long term exposure and that I had gone into shock multiple times. Its now been a year in a couple months and I’m feeling better , Im still having incredibly fatigued and have horrible insomnia but things are looking up.

PS .if this doesn’t make sense I have a little brain fog sorry…

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sjw (Jane W), Adrenal Bio

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My name is Jane and I am 76 years old. I was recently diagnosed with Cushing’s Syndrome after years and years and years of suffering symptoms.

My doctor for the past 7 years said that I had pre diabetes, high cholesterol, high blood pressure, chronic kidney disease, fatty liver, asthma, emphysema, obesity, anxiety and depression. She missed that I have actual diabetes and often told me that if I would only eat right a lot of these problems would go away. She missed the leaky heart valve, COPD, and most important, the Cushing’s.

in 1997 another doctor told me that I had a harmless tumor on top of my kidney. He said it was nothing.I shouldn’t worry about it, just forget about it, it was nothing, That was about the time my weight began to go out of control. So for at least 30 years I have not known what was wrong with me.

I spent 2 weeks in the hospital with depression while on a 600 calorie diet and I gained weight. My new endocrinologist said he was scared when he first saw me. But he has promised to take care of me because nobody else has. He has started me on Korlym and I was feeling a lot better at 3 weeks, after losing 17 pounds with no effort. Now though, I have started a new trial. This new drug does not block the progestin so in the long run will be better for me.

We shall see. I can only hope.

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Pam M (mapgirl23), Undiagnosed Bio

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I am the mother of an 18 year old daughter who I suspect has Cushing’s. Kristy was diagnosed with Tourette’s Syndrome when she was in the 5th grade. She suffers from mild to severe motor tics.

Fast forward to the end of her Freshman year and high school when she started to develop depression, anxiety and unexplained episodes of vomiting along with rash covering her entire body which the doctors just said was eczema She also developed stretch marks all over her breast, abdomen and thighs. I asked the dermatologist and she said she was just growing. She was the same size she had been for the last 2 years and was actually losing weight. I took her to a neurologist who diagnosed her with Cyclic vomiting syndrome. By May of the following year she was seeing a therapist and then went to see a psychiatrist who put her on Prozac. Her rash immediately cleared up. I asked the doctor about cortisol I figured her body must be producing to much and he said yes it was causing a stress rash.

Her mood improved temporarily and everything was blamed on the Tourette Syndrome. She started gain weight and by her Senior year she had gained 60 pounds and she barely ate. Her face became moon shaped and the majority of her weight was carried in the abdomen area. Her anxiety continued to get worse along with severe fatigue. We saw more doctors who just told her to lose weight and go to therapy to learn to live with her symptoms because there is nothing they could do for her. In June we found a new psychiatrist at U of M who increased her dosage of Prozac to the max dosage. She still has know improvement and she even attended anxiety classes to try to learn to cope.

She is now suffering from severe brain fog , has difficulty speaking and gets confused easily. In November she started having vomiting episodes and a rash again so that brought me back to thinking about her cortisol levels. I started searching the internet once again and stumbled upon Cushings once again. The light bulb went off! I ran downstairs and checked the back of her neck and there was a Buffalo Hump that wasn’t there in June. That is when I knew we may have found the answer.

We saw a new family doctor in December and she took us seriously and ordered Prolactin, testosterone, Thyroid, 24 Hour free urine cortisol and a Cortisol blood test. The Prolactin and Urine Cortisol came back elevated. The blood Cortisol 8am test cam back at the highest end of normal. We met with her psychiatrist and he agrees that it may be Cushings. We will see him on Feb. 1 and he is going to review her labs with a endocrinologist. We have an appointment with an endocrinologist on March 2 and are waiting to get into another endocrinologist at the University of Michigan. Praying for an answer!

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Patty, Pituitary Bio

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April is Cushing’s Disease Awareness Month. I would like to help raise public awareness about this debilitating illness. It is so misunderstood by most medical professionals that their patients often suffer for many years without a correct diagnosis and, in far too many cases, never get a diagnosis at all.

I personally suffered from a common list of Cushing’s symptoms for years. I sought help from medical professionals and was told nothing medically was wrong with me other than I was menopausal and needed to lose weight.

I gained 70 pounds in a short amount of time due to a tiny tumor in my pituitary gland which was overproducing the hormone ACTH, causing Cushing’s.

Besides rapid weight gain, my forearms bruised. I had a red face and neck, grew a hump on the back of my neck. My belly swelled to pregnancy size. I had high blood pressure.

No matter what I ate, how much I worked out, or how much I explained to everyone around me that I was not doing this to myself, no one believed me. I went about five years not sure what I would do because my body was slowly breaking down and was in really bad health.

In 2016 my back went out and I needed surgery. I was at a followup visit with a PA when he asked if I knew why I blew my back out.

Desperate, I got emotional and told him my story. I told him I thought I had Cushing’s disease based on my own internet research. He was the first person to listen to me and gave me a referral to see an endocrinologist. The endocrinologist took one look at me and knew without testing, although we did test and it was confirmed.

I met with my neurosurgeon and ENT and had surgery June 2017 to remove a 1 centimeter pituitary tumor, which lies at the base of your brain. I will forever be grateful to the team of doctors who saved my life and also to the PA who listened to me.

Life is slowly getting back to normal (or my new normal, I should say.)

Shared from https://www.thecamarilloacorn.com/articles/disease-may-be-hard-to-diagnose/

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Angie (Angie), Pituitary Bio

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My name is Angie.

I went to the Dr. in about Sept. of 2014 and was diagnosed with diabetes. I hadn’t seen my primary care Dr. in awhile due to her being out on pregnancy leave. She was there that day and she looked at me and told her nurse to set me up for labs to be tested for Cushings. She told me I had the look of a Cushing patient. I had gained about 50 lbs in about 6 months. I had the moon face and all the weight was in my stomach. My labs came back positive for Cushing. I was already seeing an Endo Dr. and she sent the labs to that Dr.

My Endo Dr did test on me and within 6 months they were positive I had Cushing. It showed I had a tumor on my pituitary gland. I surgery on my pituitary gland on April 11,2017. The endo dr at the hospital I had surgery at told me that the surgery was unsucessful I still had Cushing. They did a MRI in Oct. of 2017 and it showed I have 2 tumors on the gland now. I’m going for another MRI.

On May 7th to update so the surgeon will know if he’s going to take half of the gland or the whole gland. So that’s where I stand at the moment. I have diabetes, high blood pressure, high cholesterol,trouble with my bladder, kidney failure and my heart doesn’t relax its staying stiff all the time and causing me to have chest pains daily. I also have chronic migraines.

I joined a group on facebook when i found out i had it and read alot and asked alot of questions. People that don’t know anything about it needs to read up on it. I sent a link of the Cushing’s site to everyone in my family to read up on it. Some have and some haven’t.

Theres still alot I don’t know and I think it great that the ones that does have it and know alot more than some of us is a blessing.

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Autumn, Pituitary Bio PLUS Cushing’s Awareness Stickers

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A long-time member of the Cushing’s Help message boards, AutumnOMA , gave me permission to share info about these wonderful Cushing’s Awareness Stickers she has made:

CUSHING’S AWARENESS RIBBON STICKERS ARE HERE and you can get your own!!!

April is CUSHING’S Awareness Month. In honor of raising awareness, I decided to use my original Cushing’s Awareness Ribbon art to create a sticker.

In 2005, just after my pituitary surgery, while I was at home recovering and suffering thru the weening process, I decided to create an artful awareness ribbon that spoke to the beauty within each Cushie Warrior. This is why…

Cushings’s changes us. Emotionally, spiritually and physically. It takes a toll. I felt wounded beyond my medical issues. I no longer recognized my own face staring back at me from the mirror. My body took on a form of its own that was unrecognizable to me. My heart and soul ached for what I had lost because of this disease. I felt judged on appearance alone. I forgot who I was. I forgot how to see past the physical things that I couldn’t control and the daily pain. I forgot the carefree beauty of simply being alive.

I had struggled for years for a diagnosis and almost lost myself, my mind and everything I held dear. But I had made it through to the other side. Diagnosis and surgery – finally! But it was still difficult. I needed to know that I could find my inner strength to keep at it. I had to trust in my own strength and resilience to adjust to changes and find joy in the life I had. I had to believe that I had not endured what I had for no reason.

The simple truth of the matter was that I wasn’t sure how to do any of that. It felt too big; too hard. The only thing I knew with certainty was that if I could be brave enough to share my story and help raise awareness for the rare disease I was living with, maybe I could help one person…and helping one person – just one person- know they were not alone…well that was reason enough to try.

And so I set out to raise awareness and hopefully offer support to other by means of sharing my journey.

The first thing I decided was that I wanted an awareness ribbon to wear. I wanted to proudly display (like all those pretty little pink ribbons that are everywhere) that I too survived a life altering disease and I did it with little support.? There wasn’t a large Foundation like Komen, raiding money to find a cure for me. Heck, Doctors didn’t even know what Cushing’s was, let alone the vast majority of the public in general. But I wanted to pin something pretty on my shirt. I wanted an awareness ribbon that embodied hope and beauty. I wanted to wear a ribbon that would inspire people to ask me what it stood for. And so…I made my own.

As an artist, I like to create things that make me feel something. I like to create from a place of inspiration that feels good and comfortable to my soul.

I used to think that flowers, cut, in a garden or otherwise were a waste of time, effort and money because the bloom and die so quickly. But what I came to realize was that was what in fact made them so special. No matter how short the length of time they were around was, they still grew and bloomed into a spectacular show (even if for just a short while) and brought smiles and beauty to the world. What a wonderful gift to be grateful for.

For me, flowers never fail to make me smile. They are fragile, but but resilient. They are colorful and happy. They freely give their beauty for all to enjoy…they were perfect in my mind for an awareness ribbon. And from that thought came the piece of art that is the Cushing’s Awareness Ribbon or blue and yellow flowers.

I am very proud of it. And I am proud to offer these stickers with my art ribbon to help raise awareness.

These stickers are 2.5”x2.5” full color vinyl circles (approximately the size of your palm.).

Profits made from the sale of these stickers will be donated to help fund organizations that work hard to offer continued support and help for those struggling with Cushing’s – whether that be getting a diagnosis, making it through recovery or learning to live with the changes the disease brings about in our lives.

If you would like to purchase stickers please see the attached picture that include all the details about pricing and payment.

Here’s to us all remembering our inner beauty and finding a way to let it shine despite this disease…or maybe because we have this disease and realize how amazing we are as survivors!

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Rachelle L (Rachelle), Mother-in-Law of Pituitary Patient

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My daughter in law has been diagnosed with Cushings.

She has been told the tumor is inoperable and the only form of treatment is mifepristone (the abortion pill). She decided not to pursue that treatment plan since she wanted to try to have children.

She and my son were married in September, 2017 & immediately began fertility treatments to become pregnant. After 5 rounds of IUI, they found out on 3/20 they are pregnant! This brings up a whole new set of concerns as pregnancy with Cushings is very high risk.

Has anyone out there dealt with their Cushings WHILE pregnant? She has an appointment with her endo on 4/5, but we are looking for any other information from people who have actual experience with this.

Thanks in advance!

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