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Jennifer P’s Daughter, Undiagnosed Bio

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Mom to a beautiful 13 year old girl who has struggled with her weight for years.

After slowed growth doctor diagnosed her as growth hormone deficient and she has done injections for almost a year. She has grown some but still has truncal obesity and other symptoms that point to Cushing’s.

Her endo blows me off bc she doesn’t have the purple stretch marks but my fut tells me we are missing something.

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EvE7070, Pituitary Bio

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Hi and good evening new here So im EvE7070 and oh my were do i start.

I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.

But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong

i even got a allergies to peanuts which I had never had a problem with before crazy right

So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland

So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest

I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again

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Kim H, Ectopic Bio

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I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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Melissa, Pituitary Bio

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I was diagnosed with Cushing’s Syndrome about 4 yrs ago at 40 yrs old if my terrible memory serves me right.

I was told it was due to the steriods my Neurologist prescribed for Trigeminal Neuralgia and other severe facial pain. I was 110 lbs before the weight gain which ended up leaving me somewhere over 200lbs.

I had the moon face, buffalo hump, fluid retention, hair loss, blurry vision, thinning skin, confusion, anxiety, depression, terrible back pain, skin eruptions, hot flashes, and exhaustion etc. I struggled to stay awake and would fall asleep mid sentence.

The back and hip pain were so intense I couldn’t walk on my own so I had to use  a walker for over 2 yrs. Sometimes I still have to use it. I needed help getting to the bathroom. I was to weak to stand up in the shower. I was in bed 95% of the time. I was sick for a couple of years before my diagnosis.

Once PROPERLY diagnosed after many Drs made me feel as though this was all in my head. I was finally put on a long steroid taper, potassium and vitamin D. Fast forward 4 years after being told I had Cushing’s I am still debilitated by some of the syptoms.

Though I was told in the ER that my pituitary gland has started working again I am extremely weak and in pain. So much so I rarely get put of bed unless it’s for a Dr’s appointment. I have lost over 50 lbs but am left with purple stretch marks on my upper arms, breasts, stomach and hips. Also the skinny arms and legs with a fatty midsection. I am so frustrated with my body not allowing me to live a normal life.

Hopefully someone here can help me with some way to fight the fatigue, lethargy, libido and hot flashes that still remain.  I am taking  magnesium and vitamin D. and several other medications for a variety of symptoms but nothing in particular for the last symptoms I mentioned.  Is there anything one can do to have more energy? I become out of breath just walking across the room.
Many prayers and blessings to those suffering from Cushing’s.

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In Memory: Diana Crosley, June 18, 2014

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diana2003a

Portland, OR, Cushing’s Conference, October 2003, Day 2, at a “House of Magic” dinner.

diana2003b

Portland, OR, Cushing’s Conference, October 2003, Day 3. It was very windy on the Oregon Coast!

diana2005

Brighton, MI: Cushing’s Weekend, October 2005

diana2007

Columbus, OH Cushing’s meeting, 2007

Diana’s official obituary from Adams Funeral Home:

Diana Lynn Alexander Crosley, age 58, of Sidney, passed away peacefully on Wednesday, June 18, 2014, at 10:10 p.m. at her residence surrounded by her loving family.  She was born September 30, 1955, in Sidney, the daughter of Francis Alexander, and the late Laverne Egbert Alexander.

Diana is survived by her father and step-mother, Francis and Carole Alexander, of Sidney; daughters, Stacie Crosley, of Columbus, Casey Crosley, of Silver Spring, Maryland, Ericka Crosley, of Sidney; one granddaughter, Ella Laws, of Sidney; two sisters, Kathy and Randy Watercutter, of Minster, and Susan Alexander, of Mt. Vernon, Missouri.

Diana was a 1973 graduate of Anna High School. She was a registered nurse for many years. In her spare time she enjoyed meditating and doing yoga. She also enjoyed relaxing at the beach in Florida.

Her family, her children and especially her granddaughter, was the love of her life. She will be deeply missed by all.

The Crosley family would like to express their sincere thanks to Ms. Lisa Blagg and the entire staff of Wilson Hospice for the continued compassionate care of their mother during her extended illness.

Funeral services will be held on Saturday, June 21, 2014, at 3:00 p.m., at the Adams Funeral Home, 1401 Fair Road, Sidney.

Family and friends may call from 12-3 p.m. on Saturday, prior to services at the funeral home.

Memorial contributions may be made to Wilson Memorial Hospice in Diana’s memory.
Envelopes will be available at the funeral home.


Diana’s Cushing’s Help bio:

As with everyone who suffers from this disease, mine is a rather long story.

In retrospect, I believe I became symptomatic sometime around 1994. Particularly, I remember the weight gain and facial hair. I was also somewhat depressed, but at the time I was in an emotionally and physically abusive relationship and had a lot of “on the job stress” in my position as a psychiatric nurse, working for an HMO. In addition, my grandmother was ill, I turned 40 and I attributed most of my problems to “life” In 1995, I accepted a job transfer from Dayton, Oh to Birmingham, Al. My grandmother had died and I needed to get away from the relationship. Unfortunately, the office in B-ham closed after approx 18months and I accepted a position as RN/Medical director at a residential facility for children with autism, seizure disorders and behavioral problems.

Meanwhile, I continued to gain weight, I began to notice some “swelling” on the back of my neck, I bruised very easily and had problems concentrating. I went on the Phen-fen diet and lost approx 40 lbs. Of course, now I’m wondering How did that happen? If the weight gain was Cushing related In June of 1998, I was thrown from a horse and fractured my pelvis in two places. Again unfortunately, the initial x-ray didn’t reveal any breaks, so I continued to work in extreme pain. My physician kept saying I was “just a slow healer”

At this point my blood pressure skyrocketed, the slightest scratch or bump would result in a major hematoma and skin tear. I had a cardiac work-up and was told I had ischemic tissue in my left ventricle and was sent to Houston for a cardiac cath.

Ok this part’s kind of funny, now of course at the time I couldn’t believe it. If anyone’s familiar with Houston, you know how terrible the traffic can be. I arrived for the cath, at 8am I was prancing like a wild animal in my room as I waited for the nurse to bring me my “sedative” At approx 11:00 she came in and began to take my vitals. Almost simultaneously, she was paged, returned to my room to tell me that the cardiologist had broken his tooth while eating a muffin for breakfast and all his procedures for the day were cancelled. I had to reschedule. Thankfully, when I did have the cath, he told my my heart” was beautiful” When I asked about the results that said I had dying tissue he replied “Oh, that must have been a blurp on the film”.

Moving on, even though my heart was fine, I had now regained all of the weight I had lost and was in constant pain. I then moved to Florida to stay with a friend’s mother, who had suffered a stroke. I began working per diem as a Home Health RN. I kept getting worse in all areas. I went to a doctor in Fl. who told me I was depressed and getting older, ergo all my problems. He told me that the buffalo hump was a fatty lipoma and referred me to a surgeon to have it removed. I went to a surgeon for a consult, was scheduled for surgery and my COBRA ran out on my insurance and I couldn’t afford to continue it.

I then went to a plastic surgeon, who confirmed it was a fatty lipoma, of course One of the biggest he had ever seen. He even photographed it to use for teaching seminars. And don’t you know, it grew right back. I spent 1700.00 (on credit) and it came back. At this point, I was having trouble standing, sitting, lying down. I was in constant pain and was having a lot of problems just trying to do my job. I went to another physician who thought I was depressed and maybe had leukemia because my lab work was all screwed up. Here again, the bad news was I was dying but it might take twenty years for the leukemia to kill me. At this point, I was ready to hang it all up.

Then, in Aug of 2001, I had just seen my last patient and was on my way to the office to complete the paperwork when a young man did a U-turn and t-boned me on the driver’s side. This just about put me over the edge, however, again, on the bright side, I went to a chiropractor, whom I had been seeing, and she ordered an MRI of my back. The MRI also, incidentally, revealed massive bilateral, adrenal hyperplasia.

I contacted the Nurse’s Endocrine Society. They sent info on Cushing’s. I could not believe the sketching of the women with Cushing’s it looked just like me. I also fit the symptom profile, almost completely. I was referred to an endocrinologist in Melbourne, FL. He did the 24-hour urines and dex test, confirmed the diagnosis, I was already convinced. He contacted the NIH as I didn’t have health insurance. I had a bilateral adrenalectomy (right side laproscopically and open left side as I began to bleed) Jan 17, 2002. I was discharged on Jan 26th.

I came to Ohio to stay with my daughters while I recovered, never thinking in my wildest imagination that that process would be so lengthy and utterly miserable. I hurt everywhere like I had never hurt before. I developed a serious sinus infection I went back to Florida in Feb. I stayed with friends. I applied for disability, I hoped for a worker’s comp settlement for my back injury. The insurance company who was handling my claim filed Chap 11 and all pay outs were suspended. They did pay for some physical therapy. There contention is that it was the Cushing’s that was my major problem and not related to the accident, however, duh! They’re right, but because I had the Cushing’s the injury I incurred in the accident was more severe than the average person would have sustained.

When I went to the NIH in Jan the chest X-ray revealed multiple healing rib fractures which were most likely a result of the accident. So, I’m still awaiting word on my disability, I was denied, appealed, denied again and am waiting for the hearing. In the meantime, my car was repossessed, I will most likely have to file bankruptcy and am now staying with my oldest daughter in Columbus.

I have lost approx 55lbs, my skin is healed, my buffalo hump and moon face are gone. I am still in quite a bit of pain in my joints, muscles and bones. I don’t have the energy I would like to have and I still have spacey moments. The mental part has been tough. A lot of days I really wanted to be dead. I was on morphine for my pain and I was so sick I would start vomiting and it would go on for 24-36-48 hrs. I finally quit taking the morphine and thank God, that has stopped. I am relying on my family and friends for everything and I’m used to being the giver, not the taker. I guess I’m learning to be humble and I am so much better, it’s just that I’ve just gotten access to the internet, and have been reading the chat board and message board and it seems that I am still a “slow healer”

It has been one year since that surgery and I guess my expectations were that if I kept trying to be patient, get through this year things would be back to a semblance of normalcy. OK I know I’m wordy.

Thanks for the support and I would welcome input from anyone.

Diana

Update January 28, 2011

It’s been awhile since I’ve been on the boards and I’ve tried to update my bio on occasion. However, due to my impaired technical abilities (lol) I was unable to figure out how to do so, even though Mary has made it SO easy. Again, lol

Anyway, the first five yrs post BLA were painful and traumatic but also a blessing. In 2005 I started taking yoga classes and that was the beginning of an amazing transformation for me. It led to meditation and an exploration of the spiritual meaning of this illness and of life in general. Of course the transformation wasn’t immediate and it is ongoing but I feel so blessed to be experiencing this life. I’ve learned to be grateful for the gifts of all of my experiences. Without Cushings, I never would have met some of the most caring and amazing people on this earth.

In July of 2008 I returned to Florida. I am now living in a little beach town, bought a bicycle and ride it almost every day. I still have pain, but it’s manageable and I focus on my breath and gratitudes as a way of managing it. I’ve learned the value of positive thoughts and intentions. I’ve learned that we are all more powerful than we may have ever imagined. I’ve met some amazing people here and continue to read and attent seminars and classes on exploring my purpose in this life and the gifts I have to give to the universe.

To all who are just beginning this Cushing’s journey, and for those experiencing the feeling of “no light at the end of the tunnel” -the light is there, just waiting for your arrival.

You can and will get through this, your life is not over.

Again, many thanks to Mary O who has given her gifts to help other souls navigate their way through a painful time

Much love to all
Diana

Interview Archive: My Journey | Living with Cushing’s Disease

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It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.

In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

Read more at My Journey | Living with Cushing’s Disease.

interview

Rachel was our guest in an interview on BlogTalk Radio Wednesday, June 3 at 6:00 PM eastern.

The archived interview is available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.

 

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Archived Interview: Rebecca D (Rebecca D), Pituitary Patient

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Hi Ladies and Gents, my fellow Cushies!

I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!

As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.

In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”

Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.

Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).

So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!

After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*

I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be…  You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂

Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy

Stay Beautiful xoxox

Archives are available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

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