As I said earlier, I have a history of daily naps of at least 3 hours a day. It cuts into everything and prevents me from doing many things. I have to schedule my life around these naps and it’s awful.
In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery. I was terrified and sure that I wouldn’t survive the surgery.
Cushie Crusader, that’s me…and many others. I think we all have an opportunity to be Cushie Crusaders every time we tell others about our illness, share our story on or offline, post about our struggles – and triumphs – on the message boards, write blog posts in this Cushing’s Awareness Challenge…
This is a tough one. Sometimes I’m in “why me” mode. Why Cushing’s? Why cancer? Unfortunately, there’s not a thing I can do about either. Cushing’s, who knows the risk factors? For kidney cancer I found out the risk factors and nearly none apply to me. So why? But why not? No particular reason why I should be exempt from anything.
Natalie had a BLA in March, 2008. She 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 several times since then.
The image above is from our first local meeting, here in Northern VA – note the 6 Cushing St. sign behind us. Natalie was the Cushie in the middle. Today is the anniversary of Natalie’s death. Last month was the anniversary of Sue’s death. I wrote about Janice earlier.
And today, we talk about pink jeeps and ziplines… How in the world did we get here in a Cushing’s Challenge? I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues. Clear? LOL
After I was finished with the Cushing’s long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who preached the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.
In case you haven’t guessed it, my cause seems to be Cushing’s Awareness. I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop. I had been going along, raising my son, keeping the home fires burning, trying to forget all about Cushing’s...
I am not sure of the exact date but this was originally posted April 18, 2008... My name is Amy and my very best friend just passed away from an adrenal crisis. Diane was unaware that she had any adrenal issue.
I asked doctors for several years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. “It’s too rare. You couldn’t have Cushing’s.” I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s. […]
I used to carry a print out of this everywhere I go because I find it very soothing. This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Nineteen of the 2015 Cushing’s Challenge. These days, both these readings are available on my phone.
Today’s Cushing’s Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing’s. I think it is, either directly or indirectly.
Way back when we first got married, my husband thought we might have a big family with a lot of kids. He was from a family of 6 siblings, so that’s what he was accustomed to. I am an only child so I wasn’t sure about having so many. I needn’t have worried...
I need a doctor. I was just told i was being prescribed Korlym 300mg. Then my other endocrinologist told me…No! He suggested against it. My cortisol levels are off the chain. What do i do. My face is so swollen.
Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said 'endocrine'. She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com. Robin immediately went into denial and left for severa […]
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos! As early as 2001 (or before) my pituitary function was dropping. My former endo tested annually but did nothing to help me with the symptoms.
Listen as Robin Smith (staticnrg) and Mary O’Connor (MaryO) co-host Cushing’s message board members calling in to talk about their fight for diagnosis and treatment. The show will be opened with a brief explanation of what Cushing’s is and what the symptoms are.
As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a […]
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Â Make a calendar showing which days you had what symptoms. Â Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…
To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year. Â Possibly this will become a tradition.
I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much. Â In the end, there were 15Â of us trying to post daily. Â I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through.
So, tomorrow, I’ll probably go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name!
I am trying to get away from always reading, writing, breathing Cushing’s and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors. Â If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally. Â Those are listed in the right sidebar of this blog, past the Categories and before the Tags.
I first saw a similar image to this one with the saying Life. Be in it at a recreation center when my son was little. Â At the time, it was “Duh, of course I’m in it”.
The original image was one a couple males, a couple females and a dog walking/running. Â No folks in wheelchairs, no older folks and certainly no zebras.
It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world. Â It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.
A dear friend who has not one, but two forms of cancer was traveling throughout Europe for the first time after her husband’s death wrote:
Some final words before I turn in for the night. If there is a spark of desire within you to do something which is not contrary to God’s Holy Law, find a way to make it happen. All things are possible and blessings abound for those who love Him. Life is such an adventure. Don’t be a spectator – live every single moment for Him and with Him.
Somedays, it’s hard even getting up in the morning but I’m trying.  I’ve tried Water Aerobics for People with Arthritis and I actually went to class twice a week, I got a new part-time job two years ago, my son and I will play at Steinway Hall in NYC again in June, we have plans for a cruise in June, and a trip to Scotland to cross something off my Bucket List – seeing/hearing the Edinburgh Tattoo.
This is the one and only life I’ll ever have and I want to make the most of it!
So often during the diagnosis phase of Cushing’s I felt like this picture – I was walking alone to an unknown place with an unknown future.
My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors. Â In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends. Â My first hope was from a magazine (see Day Six)
After I got that first glimmer of hope, it was off to the library to try to understand medical texts. Â I would pick out words I did understand – and it was more words each trip. Â All my research led me to Cushing’s.
Unfortunately, the research didn’t lead me to doctors who could help for several years.  That contributed greatly to the loneliness.  If a Doctor says you’re not sick, friends and family are going to believe the doctor, not you.  After all, he’s the one trained to know what’s wrong, or find out.
I was so grateful when I finally got into a clinical trial at NIH and was so nice not to be alone with this mystery illness. Â I was also surprised to learn, awful as I felt, there were Cushies much worse off than I was.
I am so glad that the Internet is here now helping us all know that we’re not alone anymore.
Mary, I am delighted to see you here. Cushings – because of the persistent central obesity caused by (we know now) the lack of growth hormone plus the hypothyroidism I was diagnosed with (but for which treatment was ineffective due to my lack of cortisol) – was one of the things I considered as an explanation for my symptoms. Your site was enormously educational and helpful to me in figuring out what might be happening to me. Those other patient testimonies I referred to? Many of them were the bios you posted. Thank you so much for commenting. I am so grateful for the support and encouragement. I really hope that my experiences will help other undiagnosed hypopituitary patients find their way to a diagnosis. I often used to dream that one day I’d get to say to others what was so often said to me: don’t give up, there will be an answer. I kept believing in myself because people I hadn’t even met believed in me. Now I am finally here and I do hope my story will help others to have faith in their own instincts.
It’s Sunday again, so this is another semi-religious post so feel free to skip it 🙂
I’m sure that many would think that this is a semi-odd choice for all-time favorite hymn.
My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.
Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches. The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.
So, some of my “favorite hymns” are those that I sang when I was out with my Dad. Fond memories from long ago.
In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.
I was terrified and sure that I wouldn’t survive the surgery.
Somehow, I found a 3-tape set of Readers Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.
At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.
When I had my kidney cancer surgery, the tapes were long broken, but I had replaced all the songs – this time on my iPod.
Abide With Me was on this tape set and it remains a favorite to this day. Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700. When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them. I sign page 700.
I think that many people would probably think that this hymn is depressing. Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.
This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.
If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.
~John 15:7
Abide With Me
Words: Henry F. Lyte, 1847.
Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:
This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.
Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:
O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.
For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.
Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.
Swift to its close ebbs out life’s little day;
Earth’s joys grow dim; its glories pass away;
Change and decay in all around I see;
O Thou who changest not, abide with me.
Not a brief glance I beg, a passing word;
But as Thou dwell’st with Thy disciples, Lord,
Familiar, condescending, patient, free.
Come not to sojourn, but abide with me.
Come not in terrors, as the King of kings,
But kind and good, with healing in Thy wings,
Tears for all woes, a heart for every plea—
Come, Friend of sinners, and thus bide with me.
Thou on my head in early youth didst smile;
And, though rebellious and perverse meanwhile,
Thou hast not left me, oft as I left Thee,
On to the close, O Lord, abide with me.
I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.
I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness.
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.
Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
