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In Memory: Janice, Tuesday, September 4, 2001

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Tuesday, September 4, 2001

Double click to see these ribbons
used in Janice’s memory.

On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.

For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.

Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.

Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.

The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.

Funeral services will be on Tuesday.

Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.


A Poem written in Janice’s Memory:

JANICE’s POEM

When I Am Done
When the leaves settle
Among the earths soil
Then will I find peace
For all my work and toil.

Know not I when it will be
But of its happening, it’s a certainty
For once sick in body
Though healed in time
Can never be wiped clean
Of the illnesses grime.

The stamp of death
Left upon this soul
Will never have reason to fear
It’s pearly gates that have come, for some
But for me only when I am done.

~Adrienne Lilley

Written in Janice’s memory, may she rest in peace always.

One thing about Cushings—I no longer fear death. But I sure do embrace life.

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Al (flyguy), Undiagnosed Bio

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undiagnosed2

 

i have had every test to upset to list right now.

 

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Jordiyn (Jordiyn), Undiagnosed Bio

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undiagnosed2

Hello my name is Jordiyn and i have not been definitively diagnosed with Cushing as of yet. Im not really quite sure where to start so ill start at the beginning.

At the age of 19 i started to notice that I was gaining weight very rapidly for no reason. I was very active and I weighed about 120 and then within about 6 months I gained 60 pounds. Then from there I started to gain more weight every month/year. All in all iv gain over 100 pounds in the last 4 years even though i eat pretty healthy and exercise.

With the excessive weight gain I started to notice these pinkish/purplish stretch marks on my hips, stomach,arms and thighs. Plus I gained a lot of weight in my face and my upper back. And then I started to notice that I was so tired and weak all the time.

I think the worst part has been the back pain and that I always feel like I need a nap even though I have a very hard time sleeping. My moods started to change dramatically. I get irritated very fast and I can just start crying and the most random things, I also have really bad anxiety so much so its crippling. My depression is threw the roof.

Last year in October I even tried to kill myself and then 4 months later I tried again. I do have Bipolar and i’m on medication but it feels like none of the medication are working. My psychiatrist just has no idea what is going on with me but he did tell me he thinks there’s something going on that doesn’t relate to my bipolar.

Then last year in October I stopped having my period and this lasted until june of this year so about 9 months. In those 9 months I gain 25 pounds, I literally thought that I was pregnant but every test was negative. After tons of tests and blood work It later turned out that I have PSOD. While I was at my Gynecologist he told me that I look like someone who has Cushing’s and that i needed to talking to my primary care doctor and talk to her about it.

So as of now im waiting for my doctor to send me to an Endocrinologist. I am very nervous that I have Cushing’s. Last year while I was doing some research about all out my symptoms Cushing’s popped up and so I talked with my old doctor about it and all she did was dismiss it. So after I couldn’t get any doctor to listen to me I gave up. Then a doctor finally says to me you may have it and i feel like it a sign from God telling me that I maybe i do have Cushing’s.

I would love to make some friends and actually have someone to talk to about this. Ill keep everyone updated and I’ll also post some pictures too.

I hope to hear from all of you soon.

Jordiyn

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Donna (DD), Undiagnosed Bio

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undiagnosed7

I don’t know if I have Cushings…I have a lot of the symptoms.

My endo dr suggested I have Fibromyalgia. My mother has had that for 25 years.

I know something is wrong. I can’t lose weight! The neck fat is driving me CRAZY, this isn’t me…something is wrong! It’s affecting my entire life!

~~~~~~~~

Donna submitted a second bio:

Hello all….I’m a newbie and don’t know if I have Cushings? I’ve been diagnosed with Fibromyalgia & that’s no picnic. However, I did read somewhere that Drs diagnose Fibro when someone could actually have Cushings? Since it is rare & hard to diagnose.

I’ve had only two 24HR urine tests which come out normal. I honestly believe I have cushings..my body has changed very quickly over the last few years. I know something is wrong with me & I believe it goes beyond fibromyalgia. My GP is awesome & he believes me! I’ve been treated for so many things that all relate to Fibro or cushings.

I’m anxious to read the blogs and hoping I might find some more answers.

~~~~~~~~

Hello everyone! I’m a newbie trying to figure out what’s wrong with me? As of now I’ve been diagnosed with fibromyalgia. I have a lot of pain in my upper body, mostly the shoulder & neck area. I also had pain on the back of my neck that seemed to look like a hump. Then the extra fat in my neck showed up & fat pad in my clavicle area.

My stomach started getting bigger without any change to my diet. I have had MAJOR fatigue…sometimes sleeping 19 to 22 hrs at one time without getting up. One time I slept 36 hrs straight but had been very stressed prior to that.

Stress has been a MAJOR factor in my life for the last 5 years. I’ve had stomach issues during this time & still do. I’ve had upper & lower GI scopes.

I have IBS with constipation which has been a big problem with my bloating. I’ve been to an Endocrinologist & have had blood work & 2-24HR urine cortisol tests & all have been negative.

I honestly think I have cushings! My GP is awesome & he believes something is wrong & knows I have been struggling with my health for years!

I WONT give up!

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Melissa (Melissa), Suspected Pituitary Bio

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The pituitary gland

The pituitary gland

At only 19, I have been through a lot medically. I went through puberty at the young age of 8 and by age 15 was diagnosed with osteoporosis after breaking 20 bones within a year’s time. I had always had hormone problems and was put on birth control pills in hope to help.

This January I stopped the pill and within a few days started to feel crazy. After an allergic reaction to nuts I went to the hospital and was put on prednisone. Within a few days I was miserable and ended up on suicide watch. I knew my hormones were wacky and I had panic attacks, depression and anxiety all of which I never had before.

Over the next two months I gained 40+ Lbs all in my stomach and got “moon face” with a slight buffalo hump. I was exhausted all the time. I bruised easily and was afraid to talk to doctors for fear they would put me in a mental ward for my anxiety and depression. I could barely sleep through the night becuase of nightmares. I had no libido and started growing a lot of facial and body hair…

When I came home from freshman year, I finally went to the doctors. Urologists, cardiologists, endocrinologist, gynogylogists you name it. Most wrote me off. The endocrinologist diagnosed me with PCOS and hypothyroidism after blood work and becuase of my symptoms. However I kept having headaches and would be freezing and rapid rate heart even when laying down. I finally perseuded the doctor to do a brain MRI. I got the results last week and there is a suspected 3mm pituitary microadenoma. Of course my endocrinologist left for a month vacation and I go back to school next week.

Right now I’m in the process of figuring out where to go and what to do but I feel like this would be the closest thing to what I have… Hopefully answers will come soon

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Rsh (Rsh), Undiagnosed Bio

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undiagnosed3

I am currently undergoing tests for cushing’s as I have all of the symptoms including 50 pound weight gain in 6 months, thin skin, buffalo hump, mid body weight gain, new diabetes and new high blood pressure, red spots on my face.

Some of the tests have come up high but some have come up normal so my endocrine doctor is thinking perhaps I have cyclical cushing’s. Becoming very frustrated as I continue to gain about 10 pounds a month ( have not changed my diet which is low carb).

I hope to have some answers soon, but the Dr wants me to wait another two months to test again.

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Kristin T, Undiagnosed Bio

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undiagnosed4

Currently undiagnosed but I am a medical professional, and not stupid.

All through my adulthood (age 21ish to now at 43) I have had the following symptoms: B12 deficiency, Vitamin D deficiency, the depression/anxiety/irritability, major loss of emotional control (I can cry at the drop of a hat, sometimes in very inappropriate situations (like at work).

I can gain weight like no tomorrow (60 pounds over about 8 months. The only way I’ve been able to lose it is either gastric bypass (which created a whole other set of issues and had to be reversed) or an entire month on IV nutrition (TPN), in short abject starvation.

I have stretch marks all over the place, a fat abdomen (in spite of a tummy tuck), fat upper arms, fat thighs, back fat (oh yes, the ubiquitous hump between my shoulders and fat pads above my clavicles). I am weak to the point that a two mile walk has me in bed for the rest of the day. Forget working out, I drop from exhaustion. my back hurts, I have horrendous posture and get muscle spasms and a backache when I try to remind myself to stand up straight. I am always thirsty, and subsequently pee nonstop, I have a seemingly insatiable appetite usually for carby type stuff (although I really try to pay attention to what I eat).

I’m a total klutz and oh yes, the crowning glory: I have hair on my inner thighs, heavy hair on my lower arms and I can win a beard growing contest with a bunch of guys, although testosterone levels have been tested and are unremarkable. I’ve got a bit of hypertension (although also a little decreased kidney function, which may explain that.) I had a total hysterectomy for the heavy bleeding and constant ovarian cysts (but not the string of pearls pattern indicative of PCOS. Libido?, yeah right. I have the sex life of a nun and am frankly not interested. This is not genetic because I am the only one in my family that is like this.

Over the years I have been diagnosed with PCOS, major depressive disorder, and more recently some kind of unspecified eating disorder (apparently just because I’m fat). I have been treated as such over the years with totally no change. Birth control pills just made me bitchy, the cocktail of antidepressants seem to help minimally (I can still cry over nothing), and this is now having a huge impact on my professional life (like nearly destroying my career).

If all this crap isn’t a good reason to at the very least, look at Cushing’s, then I don’t know what is. Incidentally I had a doctor, some 13 years ago start the workup for this (had 24 hour urine, dexamethasone suppression test and a brain MRI) but this was pre-nursing school and I did not realize the seriousness of what he was suspecting, so I never followed up.

I finally have a primary care doctor who has immediately referred my to an endocrinologist. I appointment in 2 weeks and well…to be continued….

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