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 […]
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.
Through the newly available dial-up internet, I joined forces with a small group of wonderful Cushing’s advocates. Cathy Gifford and Mary O’Connor, were my first Cushing’s friends, and are still dear friends twenty one years later. Together we got things moving. Mary, has built the largest Cushing’s support boards, and her admirable dedication continues to h […]
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 […]
There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on...
Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be. I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, starting all over again…and the coronavirus which makes everything more hectic, stressful and tiring.
I remember the moment I realized something wasn’t right. My mom was taking me to the mall, because none of my jeans fit me anymore. She was talking about how she wished I would try to lose weight, because she has been overweight most of her life, and didn’t want that for me. But, I needed pants to wear to school, so I bought another size up. I remember think […]
Today, April 8th, is Cushing's Awareness Day. Please wear your Cushing's ribbons, t-shirts, awareness bracelets or Cushing's colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen. And don’t just raise awareness on April 8. Any day is a good day to raise awareness.
As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there... Interview with Mary O’Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing’s Survivor. Robin (staticnrg) hosted.
This is a continuation of an ongoing knee issue. It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future… Monday, April 5, I got that injection – and a lot of hope, finally. For my fourth injection, I had a fourth different doctor. This one had other options for me that no one else had every suggest […]
Harvey Cushing (1869-1939) is considered to be the father of modern neurological surgery. In the early part of the 20th century, he developed basic techniques and instruments for operating on the brain and, as a result, founded the discipline as a distinct surgical speciality. Before Cushing began his career, brain tumours were considered to be inoperable, a […]
On Becoming Empowered. Adapted from my blog post Participatory Medicine. This is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts. I wrote it to submit to Robin’s Grand Rounds, hosted on her blog.
I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure. Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…
Please Join Us to Celebrate 20 Years-Pituitary Patient Support Group. Saturday April 10, 2021: 9:00am-11:00am (PST) (Scroll below for Zoom meeting links) We invite you to join the conversation with our experts: Pejman Cohan, neuroendocrinologist & Daniel Kelly, neurosurgery.
I have been trying to write as many posts as I can that relate to Cushing’s this month, as part of the Cushing’s Blogger Challenge, so here is the next in the series. I know a question on the minds of a lot of Cushing’s patients post-op is whether they are actually in remission after surgery. As I discussed the other day in another post, it often can take a long time to figure this out. Neuroendocrine tumors are a special PITA this way. The tumors are tiny and soft like toothpaste and it is common for very excellent, experienced surgeons to miss a tumor or part of a tumor during surgery. And because the tumors spit out hormones they do damage and disrupt the body’s natural hormonal activities for many months, muddying the waters even further.
So how do you know if you are in remission? The annoying…
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;
Before Cushing’s Disease, I had good and bad days. When I was getting sick, things were out of control. Not only did I feel really bad but I had to analyze how I felt bad. I had to focus on why I felt bad. Those wonderful days that I felt better, I questioned how bad I felt before. It took me some time to just allow myself to enjoy feeling less horrible. I don’t even want to think about recovery because that was a whole new level of feeling poorly. Now I am over 10 years out and dealing with deficiencies.
Over the past couple months, I have been loosing energy and gaining weight. I am so tired. I sleep so much. I am certain that something is out but it will be another month until my levels are checked again. The day that not feeling well and counting that…
