Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be. Â I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, traveling, work, starting all over again…and my DH was recently diagnosed with cancer which makes everything more hectic and tiring.
It’s been like this since I was being diagnosed with Cushing’s in the mid-1980s. Â You’d think things would be improved in the last 35+ years. Â But, no.
My mind wants things to have improved, so I’ve taken on more challenges, and my Mom and DH have provided some for me (see one of my other blogs, MaryOMedical).
Thank goodness, I have only part-time jobs (5 0f them!), that I can mostly do from home. Â I don’t know how anyone post-Cushing’s could manage a full-time job!
I can see this post morphing into the topic “My Dream Day“…
I’d wake up refreshed and really awake at about 7:00AM and take the dog out for a brisk run.
Get home about 8:00AM and start on my website work.
Later in the morning, I’d get some bills paid – and there would be enough money to do so!
After lunch, out with the dog again, then practice the piano some, read a bit, finish up the website work, teach a few piano students, work on my church jobs, then dinner.
After dinner, check email, out with the dog, maybe handbell or choir practice, a bit of TV, then bed about 10PM
Nothing fancy but NO NAPS. Â Work would be getting done, time for hobbies, the dog, 3 healthy meals.
Just a normal life that so many take for granted. Or, do they?
Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.
Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.
Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.
The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.
It’s Sunday again, so this is another semi-religious post so feel free to skip it đ
I’m sure that many would think that Abide With Me is a pretty strange choice for my all-time favorite hymn, especially since it often shows up at funerals and memorial services.
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-cassette tape set of Reader’s 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, those tapes were long broken and irreplaceable, but I had replaced all the songs – this time on my iPod.
Abide With Me was on this original 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 sorrowâwhen 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 didnât make it, thoughâhe 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 âAbide with Meâ 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 lifeâs little day;
Earthâs 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 dwellâst 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 pleaâ
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 tempterâs 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 deathâs 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.
Heavenâs morning breaks, and earthâs vain shadows flee;
From Danielle’s Cushing’s Awareness Challenge Blog
Social media dominates most people’s lives these days. You see what everyone you know is up to, but the problem is, most people only post about the highlights of their lives.
You don’t get to see the low points, the every day struggles. You don’t see what keeps them up at night with worry.
I have often said, I wish I had cancer instead. Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was. I wouldn’t be questioned by my boss when I called in sick. My friends and family would be more supportive. My doctors wouldn’t question my symptoms.
One of my least favorite things about my life with chronic illness is having imaging appointments. Â Whether it’s my yearly brain MRI, or a chest X-ray, the whole process is uncomfortable, and sometimes even painful.
Usually, when a physician wants me to have imaging, they will schedule an appointment, usually the soonest available is a week or two out, sometimes more depending on the test. You usually have to arrive at the hospital 15-30 minutes before your scheduled appointment time, on top of that, there is typically a wait…
Shianne Lombard-Treman passed just three days ago. She had a form of Cushingâs Syndrome caused by adrenal tumors, and I am in remission from Cushingâs Disease caused by a tumor on my pituitary. My heart aches thinking of Shianne and all those we have lost in the last few years. Today marks the start of Cushingâs Disease Awareness Month (and Adrenal Insufficiency Awareness Month – a common result from Cushingâs treatment). I had not committed myself to the annual bloggerâs challenge, but the overflowing tears while I watched this video make me wonder if I should…
Since not too many people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:
MaryO kicks off Cushing’s Awareness Month with a blog post about a testing method that had been discussed for years but many of us haven’t been tested this way.Â
Listen as Jayne Kerns and Robin Smith (staticnrg) hosted a Cushing’s Awareness Day Special Chat a few years ago.
This chat had callers and some testimonials for the website and Mary O’Connor (MaryO). Ideas were discussed for setting up non-profit status for this website.
Today is the final day of the 2019 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 continue to be a tradition. Or not. Â Interest seems to have dwindled down a lot đ
I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much. 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 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.
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.
