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In Memory of Kate Myers ~ June 23, 2014

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Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

In Memory of Diana Crosley ~ June 18, 2014

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

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

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Brighton, MI: Cushing’s Weekend, October 2005

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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

In Memory of Sherry Carlson ~ May 30, 2020

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Sherry passed away the afternoon of May 20, 2020, naturally and peacefully in her sleep.

She loved her community and we know how grateful she was to every one of her friends on here for the genuine love and support she’s received over the years.

We (her family) are processing, but will share details about her celebration of life when we’ve worked it out.

Sherry’s Slideshow:

Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

Sherry’s bio:

I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.

I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06.

I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better.

Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case.

So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase.

I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far.

My Timeline of illness to diagnosis

3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.

1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer.

1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130#

1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off.

April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.

**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.

Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.

Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.

Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high.

Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam.

April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.

May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point.

June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now.

August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event.

Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.

Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.

Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease.

March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.

April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.

April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s.

June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test.

August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew…

October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease.

November 7, 2006- BLA …soon to be cured of Cushing’s.

Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date.

November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well.

June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal.

Nov 16, 2009

I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on.

UPDATE January 23, 2016

2016: wow has the past few years have been a roller coaster. I don’t know dates because I’m having memory issues at 47 years old.

I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA.

Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that’s it. I am a grandma of 2 and one due any day.

So for now I hope I’m on the road to recovery at least the best I can.

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In Memory: Alena Renea Weeks Greenhill ~ March 30, 2007

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in-memory

March 30, 2007

AIKEN – Ms. Alena Renea Weeks Greenhill, 31, of Aiken, died Friday, March 30, 2007 at her residence. Funeral services will be held at 3:00 PM Wednesday in the Shellhouse-Rivers Funeral Home Chapel. Reverend Robert Rish will officiate. Interment will follow in the Clearwater Branch Baptist Church Cemetery.

Pallbearers will be Joshua Weeks, Jim Rutland, Morgan Weeks, Greg Smith, Jimmy Jones, and Charles Jones.

Renea was born in Aiken, a daughter of Gail Weeks, Aiken; and James “Randy” and Debbie Weeks, Aiken. She was a lifelong resident, and worked as a medical assistant at the Women’s Health Association.

In addition to her children, Olivia Ann “Libby” and David Randall “DJ” Greenhill, survivors are a sister, Dawn Rutland (Jim) Aiken; a brother Joshua Weeks (Melissa) Aiken; Nikki Weeks, Aiken, Danielle Smith, Aiken; Greg Smith (Maria), Aiken; Kasey Smith, Aiken; JerriLynn Smith, Lincolnton; a maternal grandmother, Joyce Weeks, Aiken; a paternal grandmother, Harriette Weeks, Aiken; twelve nieces and nephews; and her special friend, Jimmy Jones, Aiken.

A niece, Taylor Weeks, and a grandfather, Gene Weeks, preceded her in death.

Please visit Renea’s online memorial at shellhouseriversfuneralhome.com

The family will receive friends at the residence of Joshua Weeks, 2334 Wire Road, Aiken on Tuesday from 12-5 PM and from 6-8 PM Tuesday evening at Shellhouse-Rivers Funeral Home, Inc., 715 East Pine Log Rd., Aiken, SC.


From my email:

Mary, I got a call tonight from Renea Greenhill’s mom who told me that Renea died Friday night. Renea was from Aiken, SC and was on the board until she did not have a computer anymore. She had tried to get groups together in SC. She had left a note that if she died that her mother was to call me and I was to let everyone on the Cushing’s board know of her death. Her mother had seen her on Friday night and talked with her later. Her boyfriend came over and found her on the floor. He called her mother who told him to call 911. He did and her mother got right over there. 911 got there, but did not attempt to revive her and she was to be an organ donor and the organs could not be used. She was dead. An autopsy found nothing wrong with her physically. I told her mother that I bet she died of an adrenal crisis and told her mother to call the coroner to have them do tests for that. She was very appreciative of my thinking of this and was going to call. Renea had been to see Dr. Laws for surgery several years ago. She ended up with meningitis from surgery there. She ended up in critical care at the Medical University of SC. Later had her adrenal glands removed. She had “beat” cushings her mother said. She had lost over 300 lbs. She has two young children who are now without a mother. Her husband had divorced her several years ago, so she was rearing the children as a single mom. Please pass this on to everyone for me for Renea at her request if this happened to her. She loved her Cushing’s friends. Below is her obit. Memorials are to be made to the Cushing’s group.

On the message boards:

• I knew Renea – I met her the Tennessee CUSH Conference. What a shame sad.gif

• I am sorry to hear of Renea’s passing…thank you for sharing with us. Condolences to her family, friends and loved ones.

• So very young — so very sad.

• My Goodness, she was so very young. This is a startling reminder how serious an adrenal crisis can be. Thank you for carrying out her wishes to let us know.

• Oh my…

I talked with Renea a few months ago. It may not have been adrenal crisis, but it may have, as Renea, after her BLA, didn’t need replacement. She hadn’t taken hydro for some year(s), and yet her cortisol was always “0”. The doctors would just scratch their heads.

Thanks for posting Mary. My prayers are with her and her family.

• I am so sorry to hear about this. My prayers go out to her children and her family. What is scary to me is the fact that, considering her history no one there thought to check to see if an adrenal crisis was responsible.

• How terribly sad. And the two young kiddies too. She sounds a remarkable woman. Very sad indeed.

• I am absolutely heartbroken over Renea’s death. She was far too young and she already suffered so much. I hope her kids know how much she loved them. I have been struggling with my own health issues lately and her death brings home just how dangerous our lives can be.

I hope she is at peace and that her family is able to cope with her death. I am so very sorry that we lost such a great person. Renea was a great source of strength for me and I will miss her dearly.

• Very sad news! My thoughts are with her family and her children.

• Thoughts with her family and children. Her mother must be devastated. I hope she can read the posts and know she’s thought of.
Very sad for these children to lose their mother at such a young age.

• My deepest condolences to her family and friends.

• How very sad. So young, and had already been through so much.

My thoughts are with her family & friends

• So very sad. So young , & so much still ahead of her.

In my prayers

• I wonder if they checked her for Nelson’s also? She looks very tan. My deepest condolences to her family and friends.

• Such a sad ending to a beautiful life. Sending peaceful thoughts to her family..

• It is very sad to fight that hard… and then the family does not know why… my thoughts and prayers are with them… It breaks my heart to think that she had to suffer so much, but she must have been such a strong, brave person to go through it. My prayers are with the family..

• How sad – she was so young. My sympathies to her children and all of her family.

• I’m so sorry to hear that another Dear Cushie was lost, I remember Renea from the old board mostly and remember how, very sick she was after her surgery, as others said she was way too young, and I’m sure her family and friends will miss her so very much. Someone we have to get all doctors on board to realize how very serious this illness is, not just a few who are out West, we all know they are good doctors, but we need some good ones in the Midwest, in the South, in the East, I know there are some, but we need more pit centers and more pit spealist on understands the devastating and life or death realality some of these pituitary tumors or adrenal tumors can cause.

I’m so sorry to learn on this happening to a dear cushie I remember from the boards.

• My prayers to her family. May God bless and keep her children. I can’t imagine how hard this is for them.

In Memory: Erica Michelle “GaGa” Meno ~ March 6, 2015

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in-memory

Erica was a fellow Cushing’s Disease survivor. She had been through pituitary surgery, radiation, and a BLA in an effort to receive her cure.

I didn’t know her myself, and I don’t know if she was a member of the Cushing’s Help boards but it’s so depressing to know that we have lost another so young from the damage done by this horrible disease.

Erica’s official obituary: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

Erica Michelle Meno returned to her heavenly home on March 6, 2015. Nicknamed, “GaGa,” she was born and raised in Cincinnati, Ohio. She was 38 years old. She graduated from Sycamore High School, Northern Kentucky University and Eastern Kentucky University. Erica had a zest for life and just loved being with her family. She loved sports of all kind and loved to cook. She was an avid reader and volunteered much of her time and many years at The Ronald Mc Donald House.

In addition to her family she had a great love for her pets especially her lively dog, Chesney. She is preceded in death by her grandparents Anthony and Mary C. Meno and Joseph and Katherine Terzo and Aunt, Karen Meno and Uncle, Bruce Ficke.

She is survived by her parents Michael and Mary Meno, devoted brother Ryan Meno and sister-in-law Melanie, loving niece and nephew, Leah and AJ Meno, her aunts and uncles: Frank and Terri Terzo, John Terzo, Judy (Terzo) and Chris Tocatlian, Victoria Ficke and Teri Zingale, cousins: Joseph and Kristen Terzo, John and Lesli Terzo , Amanda (Terzo) and Mike Stewart, Dominique and Natalie Tocatlian, Kati (Terzo) and Chris Mottershead, Dana (Terzo) and Omar Qureshy, Joe Granato, Kelly Ficke, Alex and Melanie Ficke, Vincent, Sam, and Remy Zingale. Erica was deeply loved and will be missed and remembered by many friends and family. Visitation will be 9am until time of Mass of Christian Burial at 10am on Friday, March 13th at The Community of the Good Shepherd Catholic Church, 8815 E. Kemper Road, Cincinnati, Ohio, 45249.In lieu of flowers, the family has requested donations may be made to the Ronald McDonald House Charities in Erica’s memory.https://www.rmhcincinnati.org/help/donate/donate-online or you may also donate by check, made payable to RMHC – Greater Cincinnati, and mailed to Ronald McDonald House Charities, 350 Erkenbrecher Avenue, Cincinnati, OH 45229. Thomas-Justin Memorial serving the family. – See more at: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

~~~~~~

Some of the comments from other Cushies:

My condolences to Erica’s friends and family and to our Cushie community.I too am afflicted with Cushings and a part of me dies every time I lose another fellow Cushie!The world just got a little bit dimmer without her beautiful soul!May she rest in peace and may her memory live on.She was a wonderful person.

~~

Dear Meno family, My name is Melanie and I’m a survivor of Cushing’s Disease. Your daughter and I corresponded a few times on a message board dedicated to this disease. Please accept my heartfelt condolences at the loss of your beautiful daughter. Every time a member of our Cushing’s Family leaves this earth it sends a wave of sadness throughout the world-wide members who live with this disease daily. The tribute you’ve written about Erica is lovely and indicates what a beloved daughter of God she is and how special she is to you and your family. I believe our lives continue on in the next life and believe Erica is now free from pain and sorrow. May God grant you peace and comfort in the days ahead. With love,

~~

My prayers go out to all who knew and loved Erica. Having had surgery for Cushing’s Disease and dealing with it’s consequences myself, I am inspired by her strength and determination to keep pushing forward for her cure. My heart aches that she was taken so early, and I pray she can now rest from her struggles and is at peace.

~~

I wanted to express my sincere condolences to Erica’s family and friends at this difficult time, my thoughts and prayers are with you. Sadly I never got a chance to meet Erica in person, we met though Bobbi Phillips on FB. We both have Cushing’s disease or as Erica called us Cushies and there aren’t many people that understand, it was a comfort to have someone that does. I will miss hearing from her, she will hold a special place in my heart. God Bless Erica!

~~

 

Post-Op BLA

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Adapted from a thread on the message boards.

‘m going to try to keep all of my post-op BLA updates in this thread. I am hoping it will eventually show positive progression and be a realistic and inspirational thread for others.

Today I am two weeks post-op BLA. So far, no scares. I am on 30/20/20 of hydrocortisone and weaning by 10 mg every four days. I am sleeping a good bit during the day and resting a lot to get my strength back. If I am upright too long my abdominal area aches and I get fatigued, sometimes it still aches even if I am not upright. My nighttime sleep has been good. I’m waking up only 1-2 times to go to the bathroom (I think the meds are making my bladder more active than normal), but otherwise am sleeping through the night which is a huge change from Cushing’s. I am hoping this is due to being Cushing’s-free rather than just due to the pain meds I am taking right now. We’ll see if this lasts as I drop the pain meds and hopefully the nighttime urination will let up as the hydro levels drop.

Also, and I don’t think its my imagination, but some of my stretch marks are getting lighter. In particular, the ones that formed on my legs after my pit surgery. This is a positive sign! I showed my mom and hubbie and they could both see the change too. Unfortunately, my hump is bigger right now than pre-BLA and my cheeks are still pretty red, but I bet this will change as I wean down.

No weight changes as of yet, but not expecting any because I am still on such a high dose of hydrocortisone. I was 198 the day of the BLA, which was about 15 pounds heavier than the day of my pit surgery seven months ago. For the first week and a half after the BLA I was really, really bloated – and it was all in the stomach area. Most of this bloating has gone down in the past two days.

I’ve watched my calorie intake throughout the battle with Cushing’s but I started a food journal yesterday just to make sure I am keeping myself in check. I’m eating 1500 calories a day. I noticed right away that I haven’t even been eating that much on a normal basis because I actually had to eat more than normal to meet the 1500 calories. So that’s also a good sign that watching my food intake won’t be a big change in order to help the weight to come off.

So that’s really the main things happening right now. Just taking things slow and steady and trying to have realistic expectations!


I had my six week post op appointment in Seattle last week. My weight is actually up (204, I was so bummed that I went over 200). But Dr. L said not to worry, that its normal to gain weight during the weaning process. I am still on a 1500 calorie a day diet and will stay there until I start to see weight loss and then I’ll reassess calories then. I was advised that weight will probably start to fall off when I’m six months out from surgery, so I am trying not to focus too much on it or get discouraged.

My nighttime sleep is weird right now. I’m not waking up all night long like I was before the BLA, but I can’t fall asleep at night either. I lay awake until 1 or 2 am. On the flip side, I am waking up at a normal hour – 7 am.

I just started weaning to 20/5 of hydrocortisone. It is pretty rough. The wean from 20/10/10 to 20/10 was hard, but this is even harder. Feels like the flu, achey all over, headaches, sleeping all day (which probably doesn’t help me fall asleep at a good time at night!). I have realized that I must take the wean really slowly now. The goal is to get to 20 or maybe just a little less and hopefully that dose will work for me.

In other news, I got the path report back on my adrenals – my adrenals combined weighed in at 30 gm (normal combined weight of adrenals should be between 8-12 gm). The left one was twice the weight of the right one, and they had “subtle vague expansion” and “microscopic nodularity” suggestive of adrenocortical hyperplasia.

So I am feeling very validated at this point and I know I made the right decision to have the BLA.


I’m just past the 3 month post-op anniversary. Some things are better and others are still the same. But more positive changes than anything.

We’ll get the negative overwith first – my stretch marks did an about-face and actually got a lot worse about a week after I got down to my physiological dose (20mg). Dr. L said not to worry, they’re just showing up now due to past cortisol exposure. Still, they’re pretty bad. So I was disappointed in that. My period still has not come back since I had the pit surgery. All my hormones are fine except the progesterone, but progesterone supplements are not helping. We’re taking a wait and see approach to give my body some time to get over the shock of two major surgeries.

Other than the stretch marks, the other Cushing’s symptoms are slooooowly getting better. I am sleeping pretty well now, able to fall asleep in the evening and sleep until 5:30 or 6 am until waking up. Its a lot better than waking up at 3 am every night for sure. My hump looks a little smaller (I think). My cheeks are still red, but my face is maybe slightly slimmer (I think). I’ve lost six pounds (with 80 more to lose), but am still heavier than I was the day of my BLA. Although my stomach doesn’t pooch out so much anymore, so I look less pregnant. My hair has stopped falling out.

I have been working out for a few weeks now and my strength is really starting to improve. Walking is very good for me. I’m eating about 1200 calories a day and dropping down this low seemed to jumpstart some weight loss. I am hoping it continues. I’m certainly doing nothing food-wise to keep the weight from coming off.

I was tested for insulin resistance and any thyroid problems – everything came back normal. My ACTH was super low when it was last checked – came back at 3. (yay!!!)

I went back to work 80% time this week. I’m trying to work short days but my work is very demanding so I will probably have to end up working 4 days a week and taking off one day a week to rest. I am very tired at the end of the work day. Exposure to stress is also very hard on my body – the stress I have encountered this week has caused nausea, diarrhea and one time I had to take straight to the bed and lay down all evening. Right now I feel like I am not as sharp and “on the ball” as I used to be.

My sinus infections from the pit surgery keep continuing about every 6-8 weeks. I’ve probably had at least 4-6 sinus infections since March. At the last visit to the ENT doc, she said she thinks I have a deviated septum from the pit surgery and may need surgery to correct it. I have a CT scan on Tuesday so hopefully we’ll know more soon on whether I am having another surgery.

But overall, I just feel better. The Cushing’s symptoms are slowly fading, but at least we’re going in the right direction. I am trying to be patient, and trying to remain motivated. I have to admit I am becoming very impatient for the weight to come off and still harbor fears that it won’t. I am considering throwing my scale in the spare bathroom and forgetting its existence for a while.

I hope my next update will have tons more good things to share.


So I am 6 months post BLA today. Yay! This is the magical date – things are supposed to start changing more quickly after passing this milestone. Here’s the stats so far:

20 mg hydrocortisone per day

0.1 mg florinef per day

Had thyroid checked in January – fine

Had glucose tolerance test in January – fine, no insulin resistance

Dr. L didn’t think I had GH issues at my 3 month post op appointment

Estrogen and all other female hormones fine except progesterone, taking prometrium to try to induce period with no success so far

I started losing weight at the end of January through mid March. I lost 10 pounds. But now, I haven’t lost any weight in over a month and I’ve actually regained two pounds. I am exactly what I weighed the day of my BLA now.

I’ve been working out 90 minutes 4-5 days a week (elliptical machine and weights). I’m eating net 1200 calories a day (which means I am actually eating more than 1200 because of all the exercise I am doing) and very closely tracking calories on livestrong.com.

I have to say I am very frustrated at this point because I’m working so hard and not losing weight. I’m going to bring this up with Dr. L at our six month post op appointment. If some other BLArs could chime in and tell me what to expect for the next six months, I would greatly appreciate it. Just starting to get a little nervous here.

As far as the Cushing’s goes, I have more energy and I am sleeping better. Most nights I sleep through the night and if I wake up, its only once and closer to 6 am than 3 am like it used to be. Hump is still there, hasn’t gone away but is a tad smaller. Hair stopped falling out a while ago and has stayed just fine, no relapse.

The stretch marks (which had gotten worse after the BLA) are getting much better, at least the ones on my legs. Those are noticeably better. I’ve gotten comments that my face is slimmer and I look like I’ve lost weight. I’ve gone down from third trimester maternity pants to second trimester pants. That is some progress because I look less pregnant.

Since my last update, I have had three severe episodes of AI. All occurred late at night following a week of being pushed beyond my medical restrictions at work. 32 hours a week seems to be a good balance though, more than that causes me to be really tired and at risk for AI.

I’ll close out with a great accomplishment story. Hubbie and I went on a cruise to Mexico and Belize. I was able to do a hike through the jungle (which was relatively level, for a jungle). But the best part was when we got to a clearing and saw the Mayan temples. You could climb one that was about 45 meters high with very steep stairs to the top. Of course my hubbie was the first in the group to take off up the temple. The stairs were so steep they had a rope that came from the top all the way to the bottom to pull on to help yourself get up. This was the type of thing that, before Cushing’s, I would have been right there with my husband.

He was about halfway to the top when I said, “Heck, I’m going too.” Probably shouldn’t have, but I took off up the temple stairs after him. I climbed up and up in the Belize heat and made it to the top. The view was rewarding, but the greater reward was that I could DO it. I was getting part of my life back – the adventurous, hiking, exploring, running-being-free part.

That part was the best. :D


I am weight training, 4x a week for 20-25 minutes per session, on machines, not free weights. I want to make sure I’m not getting the wrong form. I am pushing myself, sometimes only able to do five reps at a time because of the heaviness of the weight. I do a total of 3 sets of 10 reps per exercise. I’m doing upper body and lower body on different days, so 2 days a week of upper and 2 days of lower, never back to back.

My diet is good. Short of starting to cut out food groups altogether, there’s not much else I can do. I eat either whole grain cereal and skim milk or two boiled eggs and skim milk for breakfast. My mid-morning snack is fruit – usually a cup of red grapes or an apple. Lunch is a salad with grilled chicken or a Lean Cuisine or Smart Ones that has fish as the main entree – nothing over 300 calories. Mid afternoon before working out I have fat free yogurt or 30 almonds. Dinner is normally something like stuffed green peppers or chicken fajitas – usually about 500-600 calories.

I weigh/measure just about everything . . .


I’m 7 months 9 days post op today. The weight has changed a little, but only a little. At least its going down and not up, but I admit I am frustrated with my progress. I told Dr. L about my intense working out and dieting and he suggested I wean some more. So I weaned to 17.5 mg of hydro first and then down to 15 mg. I’ve been at 15 mg for 3 weeks now. The past week I started to see some progress – I lost 2.5 pounds this past week, so now for a weight loss total of 12 pounds since January. This is in conjunction with a 1200 calorie a day diet. I’ve now gone to a combination Zone diet (30 protein, 30 fat and 40 carbohydrates) and sort of low glycemic index – just as little sugar as possible. So I am eating a lot of bran, salads, chicken and fish. I’ve instituted a “salad for dinner two times a week” rule at home, which my lovely, Southern-food loving husband has generously agreed to go along with.

May was not as good a workout month as March and April. However, we did a one week vacation with LOTS of activity – hiking every other day for 2-3 miles, and we did a 14.5 mile bike ride at the end – it was mostly flat, but still! That was a long way and I was so proud of myself when I finished it. It was a struggle, but I did it.

I also got my period for the first time in over a year in May. I wonder if it is related to weaning to 15 mg? We will see if it comes back in June . . . .

Other things have gotten much better – sleeping well through the night, feeling better in general. My hair was much better until the past two weeks or so when I’ve seen more of it coming out in the shower than normal (what is that all about?!?!?) but not falling out on a regular basis like it was with Cushing’s there at the end.

I am losing some inches for sure and I don’t look as pregnant as I used to, I was able to drop from my maternity black dress pants to a size 18 pants (although the legs are still huge). I am still in my maternity jeans but I did go from trimester three to trimester two! I picked up prescriptions at the pharmacy today and my pharmacist said “You are looking great!” So that was nice to hear :)

So all in all, very very slow but seeing some progress now. I think its going to be a very long process with lots of hard work and healthy eating. It may take some more weans too, depending on whether I hit a wall again.

I know you and a lot of other BLA-ers are struggling right now. Its hard. I feel good right now because the scale went down this week and I’ve seen some physical changes in how my clothes are fitting. I know its depressing when you are not seeing that. But for you and everyone else, just hang in there. Do as much physical activity as you can, and at least control your diet, because that is in your control. I know we’re told the weight is supposed to come off on its own but I can tell a difference when I’m eating right and when I’m not. At least for me, I think it does help with the weight loss. At least psychologically I know I’m doing everything I can to make it come off.


By way of a mini update, I have lost another 2 pounds since I posted three days ago. This is getting exciting! And its not just water, you know the size 18 blank dress pants I just talked about in my last post? They are now TOO BIG!!! A friend of mine hadn’t seen me in two weeks and she was shocked today just to see the changes that have happened in two weeks. It really is noticeable.

Ok, hope I am not jinxing myself. When I update again in a few weeks hopefully I can report a very large weight loss and even more changes!


So, today I am 9 months post-op BLA. Its been almost two months since my last update. There’s been a lot of developments:

– In July, I got the results of my bone density scan: I have osteopenia and a severe vitamin D deficiency. I am now on 1200 mg of calcium a day and 50,000 IUs of Vitamin D a week.

– Hair is doing great! Not falling out, shiny, less frizzy.

– Energy is ok. Work is wearing me out, still working me beyond my medical restrictions, but I am supposed to be moving into a new job at the end of next month that will hopefully take care of some of that. I tend to get sleepy during the day and stressful days make me weak. I’ve also started waking up in the middle of the night again (NO!!! Why is this happening?!?!?) and there for a while I was waking up to pee in the middle of the night again. I wish that would stop because I was enjoying sleeping all the way to the morning.

– Stamina is great. I did a two-hour workout last week (weights and cardio) that was intense and awesome. I was so proud when I was done. I am considering returning to kickboxing in a few months if my Vitamin D levels go up and I have some confidence that my bones have gotten stronger.

– The weight is stalled out. I have lost 16 pounds now, but I haven’t lost a pound since mid-June. I weaned to 10 mg of hydro about three weeks ago and no results even with doing that. I don’t feel comfortable going any lower than that. Still at 1200 calories a day and low glycemic diet, heavy on protein, very little to no bread or cereal products. Husband and I met with reproductive endo here in Atlanta today (who I love!) and he expressed concern. My thyroid and insulin resistance tests are normal but he’s putting me on some Synthroid and Glucophage and some Prometrium. When I got my period in May the weight was just falling off . . . he thinks its PCOS-like issues and this combo of meds might help. So we’re going to try that and see how it goes.

– Stretch marks are much, much better – I noticed a marked difference after I weaned to 10 mg hydro. BLA scars are lightening too, especially with help of some new special cream from my dermotologist.

– Haven’t gotten my period again :( Boo. Hopefully the above cocktail will help with that.

– Had lasik surgery!!!! I love it. I did stress dose 30 mg extra for that. I did just fine.

So, positives yes but still very bummed about the struggles with the weight. I am hoping the new medicines will give me some results. I also feel like I’ve become more emotional lately because I’m tired of eating lettuce, spinach and egg whites (yes, that makes up a large portion of my diet) and working out and getting no relief. I hate being emotional and moody and feeling like I just can’t take it anymore. So I certainly do have those days. But thankfully they are just days – usually just one – and it passess and the next day I’m back in the battle. Because really – what else can you do?


I’m 10 months post-BLA today. Unfortunately, this update is not going to be as positive as some of my past updates.

The weight loss stands at 20 lbs now. I did start on Metformin and Synthroid at the beginning of August. I lost five pounds right away the first week, and then the weight loss stopped and I have gained back one pound. Nothing else has happened since then (despite doubling the dose of Metformin).

I can’t deny that I have become extremely depressed. Its been building for several months now. Its not just having the extra weight, but the weight keeping me from what I want to do – principally, have a baby. I’ve just lost interest in so many things and I am very down, despite the progress I have made in other areas of recovery.

I have discussed this with both Dr. L and my reproductive endo. I am going to Seattle in two weeks and we’re doing a round of labs and a growth hormone stim test. GH deficiency would explain a lot of things – the large amount of weight around the middle, the Cushie-like shape I still have. I still have a bit of a hump too.

My reproductive endo is re-testing all my thyroid hormones, estrogen, progesterone and a few others soon as well.

I am beginning to suspect I have slowly been becoming hypo-pit. Or perhaps hypo-pit in an intermittent way. I have no menstrual cycle anymore. I have ostepenia. I have energy to do stuff but then I get exhausted and sometimes it takes me days to recover. I have hot flashes, memory issues, loss of libido and insulin resistance. And, again, super slow weight loss that seems to go up every time I eat anything other than raw vegetables. I also have on and off DI.

So, I guess I am just at the end of my rope. I hope that someone can fix me. Because something is still clearly wrong.


I’m now 10 1/2 months post-op BLA. I just completed a visit to Dr. L in Seattle. I did the GH stim test and labs for thyroid, ACTH and some other things.

As I suspected, I do have some continuing issues – I am severely GH deficient. I didn’t stim above 0.9 during the entire stim test. I’ll be starting on GH as soon as possible.

My thyroid numbers are all in the normal range but they are low normal. We’re upping the Synthroid to 125 mg per day.

My MRI was clear – no new tumor (yay!) and my ACTH was 40. So that is all good. I feel hopeful that I am doing good in some areas and now we have identified the areas that are causing me problems.

I also had estrogen, FSH and LH tested today. I am hoping to find out if I am deficient there even though I haven’t been in the past – I have a suspicion the estrogen may be low now.

So, we’ll see where we stand in a few months when this medicine has had some time to kick in.


Today is the one year anniversary of my BLA. I am doing well. I’ll update here and post a separate 1 year post-op BLA thread so those who don’t follow here can be encouraged by my, dare I say it, success story?

The past month and a half I have seen some significant improvement. Here’s the breakdown:

Medicine every day:

 

12.5 mg of hydro (all taken in the morning)

0.1 mg florinef

1500 mg Metformin at night

125 mg of levothyroxine

Calcium pill and daily multivitamin

Progestrone pills on days 1-10 of each month

To start 0.2 mg of Genotropin in next few weeks

 

Energy: The thyroid medicine has helped a lot with energy. My thyroid numbers were all normal but just a bit on the low normal, so the docs didn’t think I needed meds. But I did, it has helped a lot. I am still tired but I am a lot better than I was. My GH is supposed to arrive today (yay!) so that should also help me on my path to recovery.

 

Weight loss: I haven’t really lost weight in the past few weeks but inches, oh my! I have lost inches. I have gotten tons of comments from friends, family, coworkers, etc on the change all over – face, body, etc. I am now down to a size 14. That is down from being mostly in maternity clothes and barely squeezing into a few size 18 pants a year ago. No more maternity clothes for me (for now!). Its so nice to be shopping in the regular clothes again. I have gone a bit crazy buying some new things – skinny jeans, sweaters, ballet flats, boots. I am all decked out for fall in the latest styles. It feels so good to be stylish and to have choices again.

 

The pregnancy look is gone. No more comments on when I am due or what sex the baby is. That is an awesome feeling. I’ve lost 20 solid pounds, some days a little more but it seems to always go back to that 20 number. I am trying not to weigh too much until the GH has a chance to start working.

 

Stretch marks: My stetch marks have really done some fading. Somedays they are more noticeable than others, but they are so so so much lighter than they were.

 

Hump: My hump is much smaller – its barely there at all now, I probably see it only because I am paranoid. But I have no issue wearing tank tops or anything that shows the back of my neck.

 

Hair: My hair has grown long and thicker than it used to be. Much less oily! I don’t have to wash it every single day now. I can put it in a ponytail on the weekends and it looks cute and not greasy.

 

Sleep: I am sleeping great. I sleep all through the night and don’t wake up anymore. That has become very consistent, which is a wonderful thing. I still feel tired though because of the GH but hopefully that will improve.

 

Activities: I work 32 hours a week. This works well, it gives me an extra day a week to rest and recover from the work week. I exercise often, I went back to kickboxing this month which is kicking my butt but I need to rebuild muscle. Its also nice to get back to your old hobbies.

 

Attention and Memory: This isn’t always as great, hoping the GH will help. I don’t focus as well as I used to or catch spelling details at work like I used to. Sometimes my memory is sharp and other times I forget something someone just told me or how to spell a word or the names of objects (or even people at times). Again, hoping GH will help here.

 

Female stuff: No period still, progesterone is not really helping. I think if the GH doesn’t help here, we’re going to move on to estrogen therapy in a few months. We’re hoping to start trying for a baby at the end of next year.

 

Other health issues: High blood pressure went away immediately after the BLA. I never did have a blood sugar problem so no issues there. I do have osteopenia which we are working on with more calcium and Vitamin D and weightlifting exercies. Again, hoping GH will help here.

 

Emotional: Really doing much better. I was getting really depressed for a while there, about 7-10 months post op. Even though I thought my expectations of recovery were reasonable, I was frustrated with my progress. I had hoped to lose more like 30 or 40 pounds in my first year. But, I found out I had other issues (thyroid and Gh deficiency) that were messing with that goal. So I only got halfway there but it wasn’t my fault. I also thought the weight would “fall off” more than it has, but it hasn’t. I’ve had to diet and exercise hard for every pound lost. Don’t know if that’s normal or if its just me or because of the thyroid/Gh issues we are still working on. But it helped me to know that at least there was a medical reason for my frustrations!

 

But overall I am really doing well. No one who meets me for the first time has any idea that I’ve been sick. I recently started a new position with my same employer (which has been going well) and I met my new team and everyone commented on my “glowing skin” and “happy nature.” I have no regrets about the BLA.

 

My advice to anyone considering it or just having had the BLA is: patience, patience, patience. Realistic expecatations. Then, hard work on controlling your diet and being physically fit. Do everything you can towards getting better, and then if time and hard work don’t pay off, don’t hesitate to detail your hard work and patience to your doctor and tell them to find out what else is holding you back.

 

I hope this is an inspiration to anyone out there who is struggling right now.


Wow, I am way overdue for an update! I’ve been out working, having fun and living my life!

Its been a little over three months since my last post here. I am now 1 year, three months and ten days post op BLA. Here’s the breakdown of where I am now:

Medicine every day:

 

12.5 mg of hydro (all taken in the morning)

0.1 mg florinef

1500 mg Metformin at night

150 mg of levothyroxine

Calcium pill and daily multivitamin

Progestrone pills on days 1-10 of each month

0.2 mg of Genotropin 7 days a week (started in November)

 

Energy: I am doing great here. I am tired sometimes and traveling or working long hours wears me out, but I have limited that in my life with my new job. At my new job I am working full time now, 40 hours a week. I also work out 5-6 days a week now at very energetic things like kickboxing (with punching bags) or the elliptical machine.

 

Weight loss: I didn’t lose anything between my last post and the end of December. When my thyroid medicine was raised to 150 mg at Christmas, combined with continuing my workout and diet, I really started to see results. I have lost 10 lbs since then, for a total of 31 lbs now. Still, I am not losing at the rate I should be for the math of the intake/output of my diet and working out. We are working on that, possibly some more meds to come soon. But it is much, much improved! I have about 35 pounds to go until I am at a good weight for me. Ideally I’d like to lose 45 more but 35 more would be a healthy weight for me.

 

The best thing I did was have my husband hide the scale. I only weigh every six weeks now. Now I can focus on the process and not focus on how hard it is to get the scale to go down or get depressed when it doesn’t budge. I am now in size 12 clothes. I was a 6-8 before Cushing’s, sometimes I could wear a 4. I have a few more sizes till I can wear most of the clothes in my closet.

 

Stretch marks: This is about the same since my last post. My stetch marks are almost all white. Somedays they are more noticeable than others or pinker than usual, but they are so so so much lighter than they were.

 

Hump: Same as last post – much smaller and hardly there at all.

 

Hair: Same as last post – doing great.

 

Sleep: Same as last post – doing great.

 

Activities: Like I said above, working 40 hours a week, kickboxing probably 3-4 times a week, other days I work out on the elliptical machine and lifting weights. I go walking or hiking with my husband on the weekends if the weather is nice, but this low impact working out didn’t do much for the weight loss. The kickboxing has really helped.

 

Attention and Memory: This is about the same as last time. I can’t tell that it has improved all that much. I forget things (like reminding my husband to do something when he has asked me to remind him) all the time.

 

Female stuff: No period still, had blood drawn for estrogen today. Will see whether I am going on that or not.

 

Other health issues: High blood pressure went away immediately after the BLA. No return of that, blood pressure is very good. I never did have a blood sugar problem so no issues there. I do have osteopenia which we are working on with more calcium and Vitamin D and weightlifting exercies. Again, hoping GH will help here. My sinus issues have really escalated and just never got better after surgery. I’ve had a persistent sinus infection for two years. I have mold and some other bacteria in there that countless treatments have not killed. I am having the sinuses washed in a surgery at the end of the month and am now working with an infectious disease doctor to try to kill it. Its too gross to talk about!

 

Emotional: I am really doing well. The recent weight loss has really pleased me. I don’t think I am at the maximum improvement for my weight loss rate yet, but hopefully we are getting there. I am pulling out old clothes I haven’t worn in years out of my closet. I now officially weigh less than my husband for the first time in over two years, which is also wonderful.

 

So, that is about it for now. I will update again when there are more developments!


P.S. – Notable fitness accomplishment! Six weeks ago throughout a kickboxing class I could do about 5 girlie push-ups (on knees). Last night at kickboxing class I did a total of 5 interspaced intervals of 10 for a total of . . . 50 push-ups!

 

The power of regular exercise and GH unites!


Today is the two year anniversary of my BLA. It is hard to believe that much time has passed. I can say with 100% confidence that I am doing so much better and that the BLA was the right thing for me.

I’ll update this along the same lines as my one year update, just in the name of consistency:

 

Here’s the breakdown on my meds:

 

Medicine every day:

 

7.5 mg of hydro (all taken in the morning)

0.1 mg florinef

125 mg of levothyroxine

Calcium pill and daily multivitamin

Prenatal vitamin

0.6 mg of Neutropin (next month will be going up to 1 mg Neutropin)

Birth control pills (formerly was taking 0.2 mg estrogen supplement and progesterone on days 1-10 of month)

2 tsp. of Royal Jelly and Bee Pollen in honey daily

Flonase

 

Energy: The thyoid and GH have helped a lot in this area. I could still use a little help because my GH is still very low, but I really am doing great anyways. Getting the thyroid dose right has been a battle, but I think we finally found the right dose.

 

Weight loss: I have now lost a total of 34 lbs, down from high of 206 to 172. At 5’5 I am a normal size 12 and its great. I look and feel like a normal person again (my mom even says I am “skinny” but I don’t know about that!) I am losing more inches now than I am weight. This is partly due to the need for higher GH, and partly because I am not doing the hard working out and strict dieting because my hubbie and I are working on Baby #1!!! I have fought hard with diet and exercise for every pound lost – nothing has come off easily for me.

 

So, the pregnancy look may be back in a few months, but this time it will be because I am actually pregnant

 

Stretch marks: i barely notice them at all now. My BLA surgical incisions have done a great job fading as well. I don’t know if a bikini is ever in my future, but if I am in that great shape again I might wear one around family and friends despite the scars.

 

Hump: Gone

 

Hair: Doesn’t fall out anymore, its grown long and thicker, less oily. I think the prenatal vitamins have helped in that area too.

 

Sleep: I sleep like a baby every night. I have been for a while. No more waking up, no more problems falling asleep. I do need more sleep than most people, and I am wondering if this is still due to the GH deficiency.

 

Activities: I work 40 hours a week and have been since probably the beginning of the year. I’ve been in my new job now for a year and it has been such a blessing. The reduced stress makes it possible for me to work full time.

 

Attention and Memory: This is the same as last year. It isn’t always as great, hoping the GH will help. I don’t focus as well as I used to or catch spelling details at work like I used to. Sometimes my memory is sharp and other times I forget something someone just told me or how to spell a word or the names of objects (or even people at times). Again, hoping GH will help here.

 

Female stuff: I need a combination of estrogen and progesterone in order to have a period. This still does not cause ovulation. So, we are using fertility mediation to induce ovlutation in order to get pregnant.

 

Other health issues: Same – High blood pressure went away immediately after the BLA. I never did have a blood sugar problem so no issues there. I do have osteopenia which we are working on with more calcium and Vitamin D and weightlifting exercies. Again, hoping GH will help here. I had some problems with my gums recessing and GH and better female hormones have helped there too.

 

My sinus recovery from the pit surgery has really been hard, perhaps my worst problem of all. I had surgery in April to correct the deviated septum caused by the pit surgery. I have been on and off antibiotics like crazy. I was a habitual Neti-Pot user with no improvement. Finally, I started using those spray irrigation cans twice a day, combined with Flonase to lessen the mucus, and that has helped for the past 8 weeks. I’ve seen my best improvement since by pit surgery 2.5 years ago. So let’s hope that continues.

 

Emotional: i am really very happy in my life. I am not depressed anymore and so many good things are happening to me. I thought I would have lost more weight by now but solving the GH deficiency has really taken a long time (and its still not resolved yet). Also, its important when using fertility medications to take it easy and not eat a restrictive diet, so I’ve been focusing more on the things to help us have a baby more than weight loss. I pray we are successful in having kids, and I will get back on the weight loss track after that. But its so positive to shop in normal clothes and not even be considered plus size anymore!

 

My relationship with my husband is great, unlike so many relationships we pulled together through Cushing’s and it made us stronger.

 

I am still working to have patience in the recovery and just to recognize that it goes on for a long while. I am two years out and things improve all the time. Its just good to be in a place where things are getting better rather than worse, and I can eat a piece of pizza and not gain 5 lbs, and actually be out enjoying life. Hopefully this next year I can tackle motherhood too :)


So far the BLA hasn’t been the doctor’s concern at all for getting pregnant. The problem has been the lost pituitary hormones from the pituitary surgery. If I get pregnant, there will be focus on keeping the cortisol levels appropriate, as they rise naturally during pregnancy and my meds will have to do that. But I would guess someone who did not have a BLA and had pit surgery and is still reliant on cortisol replacement would have the same issue.

There is also some focus on cortisol dosage if I have morning sickness in order to avoid AI, but the docs don’t seem too concerned and feel confident we can handle it.

PS- this was why I chose the BLA over the second pit surgery, although I lost ovulation with the first pit surgery, so fertility meds were unavoidable.


Wow, I can’t believe it, but yesterday was the three month (year!) anniversary of my BLA. I am doing awesome. Honestly, I hardly come on the boards anymore but I am trying to update this thread at least yearly in the hopes that it will help someone. Here is an update on the areas I have traditionally noted:

Here is the breakdown on my meds:

 

Hydrocortisone: There is controversy here. Technically, I am supposed to be taking 7.5 mg a day as the minimun. But its too much for me. I can live without it. I have gone months living without it. Every now and then if I feel bad I will take 5 mg. The rest tissue testing I have done at Vanderbilt has been negative for rest tissue, but clearly something is going on. I’ve also lost weight being off of the hydro.

 

Fludrocortine: Again, I am supposed to be on 0.1 mg a day, but I can live without it. I may need to take a pill once every three or four weeks, but otherwise I am fine right now.

 

125 mg of levothyroxine

 

0.6 mg of Nutropin

 

Calcium, multivitamins

 

Vaginal progestrone suppositories – these, combined with no hydro, have really helped the weight peel off

 

Estrogen patch – same, have helped the weight come off, because oral meds interfere with GH

 

Energy: I am doing great, working 40+ hours a week. Sometimes pain in my knees interferes with my workouts, but otherwise I am doing fine as long as I get 8-9 hours of sleep a night.

 

Sleep: doing great, fall asleep and usually no waking up.

 

Weight: Awesome, i made huge strides this year with the change in the manner in which female hormones are put into my body and going off the hydro. I lost 30 lbs this year, and I have now lost 64 of the 66 I gained with Cushing’s. I am wearing a size 6 or 8 depending on the store.brand. Before Cushing’s it was a 6 or a 4. But after all this, I consider this a huge success story :)

 

Hump: still gone, and man, do I have collar bones now!

 

Hair: still doing great

 

Stretchmarks: Not very noticeable, and the BLA scars are very faint. A friend of mine (who saw them after surgery) saw them yesterday for the first time in three years and was amazed.

 

Other health issues: High blood pressure gone, high cholesterol gone, sinus issues are still present but I have now had two sinus surgeries. I may be going into IV antibiotic therapy next.

 

As far as Baby #1, I had a miscarriage in March but we determined the reason was not Cushing’s related and another fixable problem I had. So, hopefully in the future I will get my bundle of joy. I am much happier that I am now at a healthier weight for it (142 lbs at 5’5).

 

Again, so happy I made this decision. I consider myself fully cured, and I am still losing weight now without much effort. Before this year, I was fighting against unbalanced hormones and while I did lose 34 lbs during that time, it took me two years! This year, only one year and 30 lbs. Balanced hormones are totally necessary, but you also need the proper manner of distribution to your body, and healthy eating and exercise.

 

I hope this helps someone along their Cushing’s journey! There is hope and light at the end of the tunnel.


Time for another update I guess.  I am continuing to do really well.  I am down to 118lbs at 5’5.  I am a size 4, sometimes a size 2.  I never thought I would see any of those numbers again, but here I am!  I am feeling good in pretty much all respects.  The only bad thing is that I seem prone to sports injuries. I don’t know if its because I’m post-Cushings or if its just me.  I’ve been in physical therapy twice in the past year now.  But I am continuing to be active and have a healthy lifestyle.

I hope everyone is doing well.  As always, let me know if you have questions about anything in my journey.


Wow I didn’t realize how long it had been since my last update! So much has happened in the last 8 years. I’ve gotten divorced and since remarried. The biggest update is that I am pregnant from IVF and expecting my first child. There was always a question after my pituitary surgery on whether this would be possible. But I froze my eggs in 2013 and 2014 and finally can say that investment paid off :)

The pregnancy has put a lot of stress on my body so I’ve had to go back on hydrocortisone and fludro. I’ve been off of both for about ten years now and surviving just on my rest tissue.  I’ve done incredibly well! So far I’ve only gained a little more than what you are supposed to while pregnant so losing the weight will be my next project once this baby is born. I’m in my third trimester now.

Its been an incredible journey. I remember reading these boards and struggling to find anyone who had had a BLA and then gotten pregnant. I hope my journey will continue to help and inform others.

In Memory: Barbara “Cookie” Rothenberg ~ Oct 11, 2003

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Saturday, Oct 11, 2003

The One and Only Cookie, photo taken by Erin
Columbus CUSH meeting, Saturday, October 26, 2002

From the posts on the message boards:

My heartfelt prayers and sympathy goes out to Cookie’s family, I never really had gotten to know Cookie Like many of you, but during a few chats, I saw how she helped many, answering questions, ect… and always willing to help out. My heart is sad to hear of her passing.


What I learned from Cookie was that she loved people and wanted to make a difference in the lives of those who suffer from Cushing’s. She touched many hearts, I know she touched mine….


Cookie was an inspiration to many of us. She gave her all for Cushing’s awareness, and I will always remember that the last time I saw her, she was singing…
Shalom, my friend.


Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.

We’ll miss you so much, Sweetie.


I was lucky to have gotten to meet Cookie. She is such a fun person and she could always cheer you up.


Cookie, gees, what can you say. She was dynamic, committed, determined, exasperating, poetic, driven, electric, comedic, funny, supportive, strong, loving, loved, and not to repeat, but a driving force in creating CUSH and helping those who needed it. She was wonderful with fundraising. She was involved in so many activies that were for the benefit of others. She has dealt with many challenges in her life and continued to passed the point that many could not.

She will be sorely missed by all who knew and knew of her.


She was just an incredible, delightful person. I really think this world is a little dimmer today without her light from within. I know a lot of us are missing her already. I remember talking to her about the upcoming conference and her enthuisiasm was contagious. I’m just so very, very sorry to hear she’s passed. I hope her next life is one without pain, where she can sing and write poems to her heart’s content. Cooke will be sorely missed.


My family and I met Cookie at the UVA Cushings Conference Fall 2002. She was so helpful and caring. She told my father, sister, and I her “Cushings Story.” She was so, well, there is no better word to describe her, “bubbly.” She was so happy to be there, teaching, learning, and helping with CUSH. She left an impression on my family and I. She had such a great personality. She was one of the very first “Cushies” I met…and she made me re-think my attitude about being sick. She was going through so much, yet she had such a wonderful attitude towards it all. She was amazing!


Cookie touched a lot of lives. I remember back on the “old board”–before any of us had met any of the others in real life–I would get these perky, cheerful and witty emails from Cookie. She had a signature that was some kind of rhyme including “Lookie, lookie,…Cookie.” Her little dollop of cheer in my “inbox” always made me smile.

It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come.


I think this fits Cookie perfectly:

Some People …
Some people come into our lives and quickly go
Some people move our souls to dance
They awaken us to new understanding
With the passing whisper of their wisdom
Some people make the sky more beautiful
To gaze upon
They stay in our lives for a while
Leave footprints in our hearts …
And we are never the same

— Anonymous

~~~

Cookie shared this poem  to show how she felt…

It was an awful state that I was in
Hair was growing on my chin
My moods were swinging from low to high
All I did was cry “let me die!”

The hair kept growing down my neck, chest and bod
Would some dr not think this was a little odd
Sometimes I was up day after day
Then I’d want to sleep all the time to chase my troubles away

Rather I’d eat nothing, something, or very little at all
It seemed getting fatter and fatter was my call
I had every symptom of menopause
Too young they said, it’s in your head, there is no cause

I sing so when I said “I have another octave that is below”
They said pack your bags, to the loony bin you go
My periods were off the dr’s. were lazy
After running tests they said I was crazy

Nine years passed, symptoms got worse and I got fatter
My arms and legs were thin, please help me, what’s the matter
I was beginning to think maybe they are right
Maybe I am just a wee bit up tight

But my husband would say find another dr. it has to be
You are not the girl who married me.
Our children were afraid to them I was so mean
I’d see myself doing and yelling and to myself I would scream
“What is wrong with you! stop it” as if I was in a bad dream

Then I went to a dermatologist for a rash I had
He took a look and and asked “What else to you is bad”
I poured out my heart, I cried and I said
I can’t take any more, I wish I was dead

He asked who I had seen and I gave him the list
And I could see on his face, he really was pissed
He got me to the Cleveland Clinic and the best dr. there
Who listened to me, and checked out the arms, legs and hair

The mood swings, personality changes, the ups and the downs
Voice lower and periods, and face and body so round
One thing he did was run the same tests
Over and over as the results were not the best

Nothing was the same result and so he knew
Surgery was what they had to do
Something is very wrong in my body he said
Let us take a look now or you will be dead

We think you have Cushing’s Syndrome or Nelson’s Syndrome, too
But we will do our best to help you
Let us open you up and we will explore
Then we will know rather we do less or more

As it turned out the x-rays did not know
What they would see and how much would have to go
My female organs had tumors, fibroids and all
They called this syndrome Stein-Leventhal

A complete hysterectomy is what was done
How I had children not one of them knew, not one
Upon seeing that problem to the adrenals they flew
And things were so bad they removed two

The adrenals, 13 times their normal size and had twisted so
On the x-ray they looked fine, but they both had to go
After that they knew and to me they said
There is a pituitary tumor in your head

But until it grows there is nothing we will do
And 15 years later is when it grew
By then CAT scans and MRI’s were everywhere
So even I could see the tumor there

And no more cutting open the persons head
Up the nose they went instead
Well here we go again, lucky me
The tumor was wrapped around an artery

We can’t take it all out but we will do our best and try
If we sever the artery, you will die
5 years later I was back and then
They took the tumor out again

I opted for radiation to kill my friend in my head
I got tired of the Cleveland Clinic saving me a bed
I had other surgeries and emotional problems but day by day
I was going back to the female way

You see I was very slowly turning into a male but how
Will I be come a women now
The next 8 years were very bad
Almost worse than the first 9 years had

I lost some weight, most of the hair went away
With Nelson’s Syndrome some of the Cushing would stay
I woke up one day and the sun was shining
I was no longer bitching, no longer crying

I was almost me except for the pounds
And the thin arms and legs and the body so round
I was accepting me my life was changing
All I needed was a little more rearranging

I was out in public, I was acting and singing again
Working, volunteering, how did this happen, when!
I still get little bouts of depression but then
I know why, I’m not scared, I feel them coming and when

So hang in there and I promise you
You’ll be doing the things you used to do
Maybe a little slower, maybe not as long
Things will brighten up, I know I am not wrong

Keep on looking the right doctor is there
I know what you are going through, I really do care
I am here for anyone to help with what I can do
We all are rooting and praying for you.

From the message boards thread about Cookie:

When Sue left a message on my answering machine this afternoon (October 11, 2003), I knew that something was terribly wrong. It never occurred to me that it could Cookie, our Cookie. Always so positive, cheery, full of life. Even though she was as sick as she was, again, I really thought that she’d pull through, one more time. How could she not? She’d survived pituitary surgeries way back, adrenal surgery, Nelson’s, Cushing’s, more than any one person should have to endure.

Throughout her too-short life, she’s been far too sick, yet she’s carried it all off with grace and enthusiasm.

First diagnosed with PCOS, Cookie had an hysterectomy years ago. During the hysterectomy, they realized that her adrenal glands were greatly enlarged. Cookie had Cushing’s disease and in 1974, Cookie had her adrenal glands removed, in 1989 she had her first pituitary surgery and in 1994 her pituitary was removed completely. Then radiation. Since these are the major glands that run the body, she has been on major hormone replacement for a long, long time, pills and daily injections. Because she had both adrenals and pituitary gland removed, she was also saddled with Nelson’s syndrome…and more medications. Because of her Cushing’s experiences, she helped to found the international CUSH organization to promote awareness of Cushing’s disease/syndrome and served as it’s treasurer and fundraiser.

In November, 2002 she had surgery for E.Coli in her sinuses, of all places (she told the doctor that she wasn’t snorting hamburg!) and in December she had a pacemaker put in.

In Feb, 2003 Cookie suffered a Code Blue. Her heart stopped and she stopped breathing. There were 15 people working on her to bring her back. She couldn’t feel her feet, then her hands were cold, then every little thing imaginable was happening with her. Then cardiac care, a heart attack. Cookie went on permanent dialysis. Her hands suffered permanent damage, Raynaud’s Disease. Her fingers turned purple and she had to wear white gloves all the time. She was bleeding internally again and her platelets were down.

I talked to Cookie after this last assault on her body and she was as cheery as ever. She wasn’t really ready to go home, but she walked 60 feet at the nursing home in several tries and if she could walk a total of 60 feet then her insurance would pay any longer. Her dialysis times were terrible. Tu, Th and Sa 8-11 PM. But her main complaint was that she couldn’t go out of state to be at the birth of a new grandchild.

Then the recent surgery to install a dialysis shunt, infections, complications…

How much can one woman take? No wonder she was tired of it all 🙁

No matter how sick she was, she was always ready with a joke, a little song. On the recorder where people leave messages for the toll-free number, Cookie left a message May 17, 2002. I’ve always left it in the answering machine, so I could get a lift by hearing Cookie sing one of her inimitable parodies. If you’d like to listen, you can hear Cookie singing and laughing, one more time [file is missing – I’ll try to find it again].

I just cannot believe this. I truly thought of Cookie as a wonder woman who could do it all, and she could pull through this, too.

I guess she got tired of dealing with illness after illness, medications, surgeries, injections, dialysis, everything. I know I get tired just thinking about dealing with any one of these. Cookie put up a very valiant front through everything. She did more to get the word out than almost anyone I know.

Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.

Many thanks to Erin for this last look…

We’ll miss you so much, Sweetie.

In Memory of Natalie Fay ~ April 21, 2008

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in-memory

This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.

Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.

Dammit Doll.

Natalie also made counted cross-stitch
Cushing’s Awareness Pins:

Natalie’s bio… http://www.cushings-help.com/natalies_story.htm

Some recent past
posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008


Tributes and Memories on the message boards…


Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]


http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


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Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

Cheryl, Bilateral Adrenalectomy Patient Bio

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Recently had both adrenal glands removed 5/7/20 after 2 failed pituitary surgeries due to Cushings disease.

Cheryl huth 63 yrs old married to David Huth  live in Mount Dora florida.

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In Memory of Sherry Carlson ~ May 30, 2020

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Sherry passed away this afternoon, naturally and peacefully in her sleep.

She loved her community and we know how grateful she was to every one of her friends on here for the genuine love and support she’s received over the years.

We (her family) are processing, but will share details about her celebration of life when we’ve worked it out.

Sherry’s Slideshow:

Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

 

Sherry’s bio:

I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.

I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06.

I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better.

Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case.

So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase.

I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far.

My Timeline of illness to diagnosis

3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.

1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer.

1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130#

1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off.

April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.

**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.

Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.

Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.

Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high.

Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam.

April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.

May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point.

June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now.

August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event.

Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.

Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.

Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease.

March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.

April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.

April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s.

June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test.

August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew…

October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease.

November 7, 2006- BLA …soon to be cured of Cushing’s.

Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date.

November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well.

June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal.

Nov 16, 2009

I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on.

UPDATE January 23, 2016

2016: wow has the past few years have been a roller coaster. I don’t know dates because I’m having memory issues at 47 years old.

I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA.

Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that’s it. I am a grandma of 2 and one due any day.

So for now I hope I’m on the road to recovery at least the best I can.

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