Muskeg Farm : Why I Think I'm in Remission, and why this isn't t...

Muskeg Farm : Why I Think I'm in Remission, and why this isn't t...: A friend of mine requested I write this post. This is a question everyone asks, and often repeatedly: "Am I in remission?" or &quo...

Muskeg Farm : Testing for Cushing's, MN Saliva

Muskeg Farm : Testing for Cushing's, MN Saliva: Oh my goodness!  I just realized I forgot salivary cortisol levels in my previous posts about cortisol testing for Cushing's Disease!!! ...

Muskeg Farm : Testing for Cushing's, Finale

Muskeg Farm : Testing for Cushing's, Finale: DIAGNOSIS!  Or so we hope.  I know it sounds weird to hope for a diagnosis, tumor, and surgery (often neuro-surgery!), but that's realit...

Muskeg Farm : Testing for Cushing's, Imaging

Muskeg Farm : Testing for Cushing's, Imaging: Imaging such as MRI's, CT's, Octreotide Scans, and Gadolinium Scans (newer) will and may be used in the search for the source of y...

Less of Me: Doctors in and around Columbus

Less of Me: Doctors in and around Columbus: As many of you know, I am seeing an endocrinologist who is continuing to test me, but if I feel at any time that I have hit a wall with her,...

Muskeg Farm : Testing for Cushing's, IPSS

Muskeg Farm : Testing for Cushing's, IPSS: Inferior Petrosal Sinus Sampling (IPSS) is another interesting test, sometimes ordered by endocrinologists, sometimes ordered by neurosurge...

Muskeg Farm : Testing for Cushing's, Dex

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Life, Cushing's, Diabetes and Me: Advise from my 12 year old daughter

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Less of Me: ...and I am a material girl

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Muskeg Farm : Testing for Cushing's, CBG

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Muskeg Farm : Testing for Cushing's, ACTH

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Less of Me: Cyclical Testing

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Less of Me: More testing, more results

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Muskeg Farm : Testing for Cushing's, MN Serum Cort

Muskeg Farm : Testing for Cushing's, MN Serum Cort: Midnight Serum Cortisol is a simple blood test that can be a good diagnostic tool for Cushing's Disease or Syndrome.  You see, cortisol ...

Less of Me: My mimi

Less of Me: My mimi: Last Wednesday morning I woke up from a very vivid dream, in which my grandmother visited me. When I say she visited me, I mean her spirit, ...

4/22/15 ~ Interview with Stephanie (Steph), PCOS/Possible Cushing's Patient

The next interview on BlogTalk Radio will be Wednesday, April 22 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.

Steph has a bio posted here: http://cushingsbios.com/2015/04/16/stephanie-steph-undiagnosed-bio/

The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you're waiting, there are currently 82 other past interviews to listen to!

In her bio, Steph writes:

Hi. My name Steph, and this has been a long journey for me so far, and I see a long road ahead. Hopefully their will be a rainbow once all these clouds have melted away.

I just turned 33 years old (this month) and have been dealing with symptoms of Cushing’s since I was a pre-teen without even knowing it. I was diagnosed (or possibly mis-diagnosed) with PCOS when I was about 11. That’s when the irregular (to almost non-existent) menstrual cycles, hirutism (chin, upper lip, upper and lower thighs, fingers, toes, basically everywhere) and weight problems began. I was immediately put on birth control to regulate my periods, which only made my life a living nightmare. They forced on a fake (non-ovulating) period and made my moods a disaster. I went on to be on birth control until from the age of 11 until about 3 years ago when I just couldn’t take it anymore, and took myself off. I’ve been using herbal supplements for menstrual regulalation since then, and feel MUCH better.

Over the years I’ve always felt like there was something “more than PCOS” wrong with me. From the extreme inability to lose weight normally, and the ease to gain it, to the weak legs, vitamen d insuffeciency, high cholesterol, high blood pressure, extreme irritability, now non-existent cycle, shortness of breath (just from walking up 1 flight of stairs), slow healing, hoarse voice, high testosterone, male pattern baldness, blurry vision, EXTREME brain fog etc….. It has been very, very, very tough and emotional over the years. It has taken a toll on my personality, emotions, and those around me….

The way that I found out about cushing’s is rather unique. I was on a popular PCOS message board site called “soul cysters”, and I have always been EXTREMELY self conscience of my round puffy face, and was wondering if it could be a side effect of PCOS. So I searched Puffy face on the message board to see if others on the board had experienced it, and sure enough Cushing’s came up, and a suprising number of women either had both (cushing’s and PCOS) or had been mis-diagnosed, which apparently is very common with cushing’s. it was like a gigantic light bulb went off in my head when I started googling cushings symptoms. All these things that I have been experiencing almost my entire life started coming together. I’m really not crazy!! Everything is possibly related. Im almost 100% sure that this is it!!! I don’t know if this is a good or bad thing, as I see that cushing’s is curable in most cases, but it is also scary, and diagnosing it seems like hell!!

I have began my -already slow- journey to diagnosis. And, the the Dr.’s don’t seem to be all that well informed. However, I am DETERMINED. I am excited at the thought of possibly being able to get my life back through surgery or meds. I went to a well respected Endo in my area, and she is gonna test all of my hormones, including my cortisol level. Though she didn’t seem to be too informed on Cushing’s when I brought it up, along with my “dead ringer” symptoms. I’m going to a pulmonologist on the 29th as suggested by my GP (who also thinks I have cushings, but admits he’s not well informed enough or equipped to diagnose). I’m also going to an OBGYN soon (tried going to one today, and had to walk out because it was such a bad experience). But I am determined to get 2nd, 3rd, and however many opinions are needed until I am satisfied.

Also, on a side note, possibly having cushing’s, along with having PCOS, has made me look at the doctors and the medical profession as a whole in a different light. I feel like if you find a genuinely good doctor who listens, cares, takes you seriously, and is willing to test you without question, and work with you, your levels, and your symptoms, you are blessed!! I have had so many doctors try to push meds down my throat (for their own pockets/greed obviously) when it wasn’t needed or necessary without hesitation or question. And, then when I tell them that the medicine is affecting me adversely, they just tell me to keep taking it! It’s sad and ridiculous. I’ve had to learn to do my own research, know my own body well, and trust my own judgement…..

I will be praying for myself and everyone on this message board who has had to deal with this horrific symptoms over the years.

Updates coming…..

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Muskeg Farm : Testing for Cushing's, 24 hour UFCs

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Muskeg Farm : Testing for Cushing's, Introduction

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Less of Me: Now what??

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Muskeg Farm : Growth Hormone Deficiency in Adulthood and the Eff...

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Less of Me: Now what??

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survive the journey: Cushing's Awareness: Testing

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Muskeg Farm : Nerdy Zebras

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survive the journey: Cushing's Awareness: Pituitary hormones and disor...

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Muskeg Farm : Adrenal Insufficiency and Adrenal Crisis

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Less of Me: My Appointment with Dr R. and Devon

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Life, Cushing's, Diabetes and Me: What Cushing's Syndrome is to me...

Life, Cushing's, Diabetes and Me: What Cushing's Syndrome is to me...: What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.) Cushing's Syndrome and Disease is...

Muskeg Farm : Cushie Friends

Muskeg Farm : Cushie Friends: On the first night of our trip, we were able to meet up with some fellow Cushie's for dinner ON Cushing's Awareness Day -- Dr. Har...

Less of Me: All things pituitary

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survive the journey: Cushing's Awareness: Heritable Cushing's

survive the journey: Cushing's Awareness: Heritable Cushing's: There are several forms of known heritable Cushing's.    The most well-known is MEN1. Carney Complex is also fairly well understood.  Th...

Less of Me: Movie Monday!

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Muskeg Farm : Pushing yourself

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Life, Cushing's, Diabetes and Me: My thoughts for the day....

Life, Cushing's, Diabetes and Me: My thoughts for the day....: I've been thinking a lot about my first round with Cushing's a lot lately. My endocrinologist has me tapering off of hydrocortisone ...

survive the journey: Cushing's Awareness: Types of Tumors

survive the journey: Cushing's Awareness: Types of Tumors: Just how many kinds of tumors are there associated with Cushing's? Wait, are we talking about pituitary tumors? Or adrenal tumors? How ...

Less of Me: Confidence

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survive the journey: Cushing's Awareness: Subclinical Cushing's

survive the journey: Cushing's Awareness: Subclinical Cushing's: Subclinical Cushing's Disease/Syndrome has be a controversial diagnosis.  Only in the past decade has the term been used.  According to ...

Muskeg Farm : Sphygmomanometer (SFIG-moh-mə-NOM-i-tər)

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Less of Me: Pleased to meet ya

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Life, Cushing's, Diabetes and Me: My life in chaos

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Muskeg Farm : Word Search (Why not?)

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Less of Me: The ugly truth: my skin

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survive the journey: Cushing's Awareness: When the Gold Standard Becom...

survive the journey: Cushing's Awareness: When the Gold Standard Becom...: The following is a repeat of an old post, but it still has such relevance, especially when talking about "mild" or subclinical Cus...

Muskeg Farm : Happy Birthday Dr Harvey Cushing

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Life, Cushing's, Diabetes and Me: I blog about my health because

Life, Cushing's, Diabetes and Me: I blog about my health because: This is going to be a short post. My daughter is in the hospital, so I am staying with her. I blog about my health because I want to educate...

Less of Me: Cushing's Awareness Day!

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survive the journey: Cushing's Awareness: Cushing's Awareness Day

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Muskeg Farm : Pituitary MRI -Review

Muskeg Farm : Pituitary MRI -Review: I was PM'd today on Facebook by someone asking questions about the MRI's.  So, I figured I'd revisit some pituitary MRI info in ...

Life, Cushing's, Diabetes and Me: Challenges & Victories

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Less of Me: My medical history

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2 cushie girls: Day 6.....5 things every Person living with rare d...

2 cushie girls: Day 6.....5 things every Person living with rare d...: I wanted to share this article with you. Rachel and I were interviewed and this article came out. We weren't paid in any way just wantin...

Life, Cushing's, Diabetes and Me: Medication Information

Life, Cushing's, Diabetes and Me: Medication Information: The role my medication plays in my life. When I was diagnosed with Cushing's and the many things thereafter, I went from taking no med...

Muskeg Farm : Cushing's Jeopardy:

Muskeg Farm : Cushing's Jeopardy:: Cushing's Disease for 600, Alex! What is the worst disease you've never heard of? Which illness is diagnosed through serial 24 h...

Less of Me: Weight GAIN progression

Less of Me: Weight GAIN progression: Well... this is really hard for me. It's one thing to know how much weight I've put on...it's another to see it. I mean I face m...

Life, Cushing's, Diabetes and Me: My Children's perspective....

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Muskeg Farm : Easter

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survive the journey: Cushing's Awareness Month: Causes of Cushing's

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Life, Cushing's, Diabetes and Me: Call the police, my life has been stolen

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Muskeg Farm : Sleep

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Past Cushing’s Awareness Challenge Bloggers

This page  is starting to load pretty slowly and I’m guessing that it’s maybe because of all the blog posts it has to load.  So, I’m going to take all the Cushing’s Awareness Challenge Bloggers from 2012-2014 and post them here so I can delete the blog rolls that they’re in now.

Eventually, when I have time, I’ll add the blogs to the general “All Cushie Blogs” list.  Hopefully, that will speed the page up!  I don’t know if there was a problem last year because I’m sure we had more than 2 of us participating!

Cushing’s Awareness Challenge 2014

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  CushieBlog

  How Patients Are Driving Research & Cures For Their Own Rare Diseases
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  Muskeg Farm

  Surviving

Cushing’s Awareness Challenge 2013

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  CushieBlog

  How Patients Are Driving Research & Cures For Their Own Rare Diseases - By definition, a rare disease is one that strikes fewer than 200,000 Americans, sometimes only a few dozen. But with 7,000 rare diseases known to doctors, …

  3 hours ago
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  survive the journey

  

  Cushing’s Awareness Month -April is Cushing’s Awareness Month. Bloggers all over the world are joining in to help others become aware. The list of bloggers can be found here, on t…

  4 hours ago
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  My life as a girl with Cushings

  Redbook article on Cushing’s - Found a really well written article about Cushing’s in Redbook. Take a look and let me know what you think! I always love when this disease gets some cover…

  1 week ago
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  Life With Cushing’s

  Endocrine and Rheumatology Follow Up Visits - I had my endocrine and rheumatology follow up appointments last week. I was scheduled to see endocrine anyway, but the rheumatology appointment ended up ha…

  1 month ago
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  Brain Tumors can make you Fat!

  Irony - My health always limits what I can do, especially day to day. I save spoons for the important things so that I can be more up and outgoing and have a good…

  10 months ago
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  My Life As A Cushie

  CUSHING’S AWARENESS DAY!!! - HAPPY BIRTHDAY DR. HARVEY CUSHING!!!!! With today being Cushing’s Awareness Day, I thought I would updated my blog. 412 days ago today I had an operati…

  11 months ago
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  Condenados à Liberdade

  

  Lilian (+ que) Um anjo em Minha Vida - Estou escrevendo pois meus pensamentos precisam sair para fora da minha cabeça… Não sei se irei publicar isso no blog, não sei se será hoje, mas eu prec…

  2 years ago
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  “Girl Disappearing to some secret prison, but she’s right in front of me.”

  

  Day 30 of Cushing’s Awareness: April showers bring May flowers. -Today is April 30th and that means that I have completed the 30 day challenge to help raise awareness for Cushing’s. I am really glad that I have been able…

  2 years ago

Cushing’s Awareness Challenge 2012

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  survive the journey

  

  Cushing’s Awareness Month -April is Cushing’s Awareness Month. Bloggers all over the world are joining in to help others become aware. The list of bloggers can be found here, on t…

  4 hours ago
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  Cushing’s with Moxie: Fighting The Worst Disease You’ve Never Heard Of

  

  After gaining 120 pounds in 1 year, rare diagnosis saves man’s life -Cushing’s was featured this morning on the Today Show’s Medical Mysteries three-part series. [Hooray for national exposure!] Donelle Trotman, a father in…

  2 weeks ago
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  Cushie Mama

  

  Happy Pi day! - I know it’s been a year and a half since I’ve posted here (sorry!)! But I wanted to do a quick update. I’m still doing great! Still on 20mg of hydro daily…

  2 weeks ago
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  Cushings Disease

  Moonrise Kingdom (2012) Online Streaming - Download fuld *Moonrise Kingdom* i HD-video. Download film *Moonrise Kingdom* i high definition kvalitet. Se fuld film *Moonrise Kingdom* i bedste look v…

  4 weeks ago
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  Life With Cushing’s

  Endocrine and Rheumatology Follow Up Visits - I had my endocrine and rheumatology follow up appointments last week. I was scheduled to see endocrine anyway, but the rheumatology appointment ended up ha…

  1 month ago
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  livehard.lovestrong

  My story - For those of you who don’t know the story behind my getting sick… I was never diagnosed with Cushings, or even thought that it could be an issue. No one…

  1 month ago
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  New post

  

  Another diagnosis, Another day, Another blog post - I’m clearly being facetious about the “another blog post” part as I haven’t written in here since the spring. I frankly have too much on my plate as it i…

  7 months ago
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  Being a Cushie

  Hormones, dating and other facts of life -Well the news since the last post regarding my health, is that I underwent the Insulin Stress Test (IST) and got my results. The IST is a test during which…

  10 months ago
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  Hear hoofbeats, think Zebras

  

  Did you know that Cushing’s KILLS?? - This weekend the Cushing’s community lost another warrior way too early. Melinda was only 25 years old, but she had been fighting for her health for a lon…

  10 months ago
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  Brain Tumors can make you Fat!

  Irony - My health always limits what I can do, especially day to day. I save spoons for the important things so that I can be more up and outgoing and have a good…

  10 months ago
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  Sarah versus Earl

  One year later - This won’t be long, as I’m heading to bed. But since it is my one year anniversary of being Cushing’s free, I wanted to write something. Since you read my …

  1 year ago
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  Living with Stripes

  Cushing’s disease diagnosis - Today is May 1, 2013….on this date in 2011 I was diagnosed with Cushing’s Disease. Today am I six-months post BLA. If you told me then this is where I’…

  1 year ago
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  CushieBlog

  We’ve Moved! - Our new address is http://www.cushieblog.com See you there!

  1 year ago
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  One Day At A Time

  I’m now 5 months post op tummy tuck -Well, I’ve never been known for keeping up with my blog. I’m bad about that. Anyway, I have had a bit of a set back. It seems I have a hernia again. I had …

  2 years ago
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  Miss Diagnosis

  It’s Back… - We spoke with Dr. Friedman this week and he confirmed what we already knew. Alex is producing cortisol, yet again. She had both a pituitary MRI and an adre…

  2 years ago
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  Luta contra a Doença/Sindrome de Cushing

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  2 years ago
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  Just Another Day in Paradise

  

  Taquitos! - My daughter, Kaitlyn, brought this recipe home from college with her. Easy to make and really yummy! *Taquitos * 1/3 C cream cheese 1/4 C salsa 1 tbls f…

  2 years ago
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  Girl Disappearing to some secret prison, but she’s right in front of me.

  

  Day 30 of Cushing’s Awareness: April showers bring May flowers. -Today is April 30th and that means that I have completed the 30 day challenge to help raise awareness for Cushing’s. I am really glad that I have been able…

  2 years ago
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  7 oh! 7

  Day 26 – Magic Foundation - So wish that my son and I could attend this together. Maybe it will work out next year! Please click here to see what The Magic Foundation Convention is a…

  2 years ago
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  Fight of My Life (Girl fighting in zebra print)

  It is with you every day in so many ways.- I have not been keeping up with the blog. Not because it isn’t important or I don’t think about it but because like so many others I just don’t have enough…

  2 years ago
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  Cushing’s Family

  – I’ve often had imaginary conversations with doctors concerning my family’s health. I know that we didn’t encounter as many unsupportive doctors as m…

  2 years ago
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  It’s a Cushie Life: my journey to Cushing’s Syndrome recovery

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  When I Was You…

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