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MaryO: Giving Thanks for 30 Years

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Today is the 30th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

Mary S (ladysslipper), Adrenal Bio

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Originally from December 28, 2007

I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.

Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.

My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.

My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.

With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.

I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.

 

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Crystal, Pseudo Cushing’s Bio

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I was first diagnosed with psudo cushings at Duke University and was told that if I wasn’t better in a year to come back. I was on crutches for three months because of the weakness of my bones and I had fallen and cracked my pubic bone.

I suffered for a year and went back. I had high blood pressure, swollen legs and ankels, bruised easily, had gained 50 lbs., depression, my hair texture changed, it was like straw. My mid section was hugh, my face was huge . I had swelling around my neck. My toenails on one foot were crumbling. I had blurred vision, weakness in the legs and fatigue. I have probably left something out. I had MRI’s and CT scans and they couldn’t find a thing.

Thank God they referred me to the National Institite of Health in Bethesda, Md. In June of ’07 they ran every kind of test they could and could not find a tumor. I have been put in the catagory of one in two million. They first put me on a study drug called RU486. It was an abortion drug used in Europe in the 80’s which caused much controversy. It was supposed to keep the cortisol from attaching to the red blood cells. I took it for 3 months but it did not work. I just got worse. My potassium would drop and my feet would swell so big I felt like they could pop. I was given 20 bags of potassium intraveniously in one week at the NIH. Oh yes, I was also anemic and had to have a blood transfusion.

As a result from weak bones, I have also developed Avascular Necrosis. My right shoulder has deteriorated which causes much pain and I have to live on pain medicine. I stopped the study drug and am now taking the max dose of Ketoconazole and am also taking Mitotane.

I stayed at the NIH from Sept. to Nov. , 8 weeks altogether. I lost 35 lbs in one month. I felt almost like my old self again. I have a paraesophageal hernia and was taking Protonix. The doctors discontinued Protonix because one must have acid in order for the Ketoconazole to be absorbed.

Eventually I was in great pain. I had to sip my drinks and couldn’t eat sometimes without throwing up. Jan. 6 of ’08 I returned to the NIH and they did MRI’s, Ct’s, Octreoscans, etc. and still fould nothing. They think the tumor might be behind my hernia but with Cushing’s it is too risky to have the surgery for my hernia I am told. I got home Jan. 24 and was in more pain. I could hardly eat or drink.

On Jan. 30 I broke out in a cold sweat and started vomiting and then I had what I thought was diarrhea turned out to be fresh blood. My husband call for an ambulance. It turns out that I had developed an ulcer and it had a blood vessel in it that ruptured. I lost 1/3 of the blood in my body. The doctors told me I could have died easily. They were able to correct it with an endoscopy. I stayed in ICU for 2 days. I was discharged from the hospital just this past Mon. The idea here is to drink Coke with my medicine in hopes that it will produce enough acid to absorb since I must now take Protonix.

Tonight my ankels started swelling some and my arms are bruising. I am very frightened. If this medicine doesn’t work, and they can’t find the tumor, all that is left is an adrenalectomy. I hear that one never feels the same. Please someone, let me know.

Oh, I will be 48 on Feb. 12 and have always been healthy. I had never even heard of Cushing’s until I got it.

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Sam in the News

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Sam is Jackie’s daughter.  There is more info about their family’s Cushing’s experiences here: https://cushingsbios.com/2013/06/23/jackie-samsmom-adrenal-bio/

Sam and her mom also participated in a Cushing’s Help interview which you can read here: http://www.cushie.info/index.php/cushing-s/about-us/interviews/207-sam-and-her-mom-jackie-february-2-2005

And one to listen to on BlogTalkRadio at http://www.blogtalkradio.com/cushingshelp/2008/05/15/interview-with-jackie-samsmon-jordan

This article was posted by long-time message board member Samsmom about her daughter Sam.

AIM senior Samantha Edgar doesn’t let health issues hold her down

superkidedgar

SNOHOMISH — Samantha Edgar, 17, has faced limitations with serious health issues, including Addison’s disease and osteoporosis. But the AIM High School senior is overcoming them in amazing ways.

Question: Your school administrator says you come to school every day with a smile despite some serious health challenges.

Answer: I’ve had adrenal deficiency since I was 4 years old because my adrenal glands were infected with a lot of tumors. The guy who diagnosed me (Dr. Constantine Stratakis) I’m actually doing an internship with this summer at the National Institutes of Health. It’s pretty nerve-wracking. It will be fun.

Q: Wow. How did you end up with that?

A: (My mom and I) were talking about asking for an internship, and joking that he’d probably just say apply, like he normally does. … I asked “if I can maybe shadow you this summer and, um, hang out?” He was like, “Of course.” All the interns just stared at me. (Most of them are in medical degree programs) who’ve applied five times.

Q: What do you hope to get from it?

A: I’m hoping to understand my own thing a little bit more afterward, and then have opportunities after that stem from it. It’ll be interesting at least.

Q: Your mom is planning to rent an apartment and live out there with you.

A: I’m still her baby. … If anything, though, it’s the best place to have an issue.

Q: Your last life-threatening experience was when you were 10. You had the flu and were unable to keep down your medications, which you need to take three times a day. What other issues are you susceptible to?

A: If I am to break a bone or something I could go into what’s called adrenal crisis. (The body) goes into shock.

Q: And yet …

A: I do mounted archery, which is horseback archery. My mom is pretty much nervous every time I go down the course because I’m probably going around 30 (mph) and shooting an arrow at a target or five.

Read the rest of the article here: http://www.heraldnet.com/news/aim-senior-samantha-edgar-doesnt-let-health-issues-hold-her-down/

samhorse

 

29 Years ~ Giving Thanks

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29-anniversary

Today is the 29th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 29 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m now 10 years NED (no evidence of disease) from cancer, I still can’t go back on the GH.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last year, I’ve developed ongoing knee issues.  Because of my Cortef use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on another blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days at http://www.maryo.co/

Candy (Candybar11), Pituitary Bio

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pituitary-surgery

 

I was diagnosed with Cushing’s in 1997.

I had never heard of it before my doctor said he thought I might have Cushing’s. I went right to the library and read about the disease, they literally could have used a picture of me to display the physical characteristics.

After some testing I went to the NIH to verify I had a pituitary tumor. After it was confirmed I was scheduled for surgery. My surgery was successful to a point. They said a small part of my tumor could not be removed. My recovery went fairly well!

I began to lose weight and a lot of my symptoms went away. However it has been a long road. I still have some symptoms that never went away, I still sweat a lot, body aches and pains (now I have RA, fibromyalgia) memory not great, never lost all my weight either. My labs all say most of the time I am in normal range but I do not feel cured! But new doctor says numbers are fine you are fine.

I have been disabled since 1993, I had a lot of health issues that later were all related to Cushing’s. This disease in my opinion is never cured!

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In Memory: Diana Crosley

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diana2003a

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

diana2003b

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

diana2005

Brighton, MI: Cushing’s Weekend, October 2005

diana2007

Columbus, OH Cushing’s meeting, 2007

Diana’s official obituary from Adams Funeral Home:

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

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

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

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

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

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

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

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


Diana’s Cushing’s Help bio:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Diana

Update January 28, 2011

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

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

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

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

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

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

Much love to all
Diana

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