Cushing’s Disease and Oral Health

Cushing’s Disease is an endocrine disorder related to the pituitary gland. This “master gland” is responsible for secreting life-sustaining hormones that act as signals to other organs and gland in our body to disperse their own secretions. One of these secretions of particular interest to victims of Cushing’s Disease is the cortisol hormone, which is dispersed from the adrenal glands. CD patients suffer from excessive cortisol, which can lead to weight gain, metabolic disorders (including diabetes), heart and liver disease, respiratory problems, skin abnormalities, edema, loss of mental and cognitive functioning, and ultimately (if not diagnosed and treated properly), death.

I have suffered from Cushing’s Disease, unknowingly, for many years. It is a very difficult disease to diagnose. Only 10 out of every 1 million people are diagnosed each year. In 2014, I finally received my diagnosis and treatment. The remission is sometimes just as tough as the disease.

On a dental-related matter, it is so important for people with Cushing’s Disease to maintain routine care with their dentist/hygienist. CD patients are more prone to infections; periodontal disease and abscesses in particular. This is not to say that dry mouth and tooth decay are not just as much of a concern. (In my personal experience, I have found that the medications I was on before and after my CD treatment played a profound role in the health of my teeth. At one appointment, I was informed that I had eight teeth with Class II decay!) Additionally, patients who suffer from severe depression, emotional disorders, and other psychogenic diseases resulting from CD may not be capable (or willing) to maintain good oral hygiene.

Brushing, flossing, water irrigation, antimicrobial mouthwashes, and even periodic fluoride treatments can be helpful in boosting or sustaining oral health. CD patients should discuss their diagnosis with their dentist and healthcare professionals and work together to form a treatment plan that “custom fits” each patient. It is my belief (although I have no medical evidence to back it up) that care should also be taken with anesthesia, should an invasive dental procedure need completed. From another personal experience, I’ve noticed that, before my tumor was removed, epinephrine from local anesthesia seemed to make me anxious and gave me heart palpatations.

Cushing’s Disease awareness month is every April, and you can find more information about this disease at the Cushing’s Support and Research Foundation website. If you know of anyone who is exhibiting the signs and symptoms of Cushing’s Disease, please go to: www.coulditbecushings.weebly.com Remember to visit your dentist at least twice a year!

Hope…Faith…Belief…

…because without these things and our heavenly Father…what else could possibly give us the strength to fight?

To a woman who is like family, to a lady I adore who has come a long way, and to this woman who still has a few more chains to break…

…it might be hard, but we’ll do it…

….and they’ll see that we’re strong…

 

 

Looking back…

Recently, I came across a paper that I wrote before my surgery, but after my Cushing’s Disease diagnosis, back in 2014. Looking at it now, it seems like it was so long ago…but it has only been a of couple short years since I was still a prisoner of Cushing’s Disease, and yet, had no inkling of my captivity!

As of today, I have been in contact with so many survivors and fighters of this disease, and feel a connection to each and every one of them. Some, I have established lasting friendships. Others, we lean on each other for advice and support only as needed. Either way, I keep them all in my thoughts and pray for them often.

One of the young ladies I have been in steady contact with lately has just received her diagnosis and will be receiving her surgical path to recovery soon. In conversations we’ve been having, memories of where I was at two years ago came rushing back to me in an unexpected flood of emotions. I remember all too well the pain, anger, sadness, fear, anguish, and complete exhaustion that she is experiencing right now. The future is unclear. Health conditions are quickly worsening and all hope of relief is deteriorating. Some days feel like its your last day on earth – you wonder when death will sweep you under the carpet – how it will feel. You are crippled and willing to accept defeat. All you can do is sit. And hurt. And wait. And cry. There is no solace. There is no comfort. There is no light at the end of the tunnel. People don’t believe you or understand your grief.

This letter…it really sums up the disease in a nutshell…

written by Jenifer E. Williams, Cushing’s Disease Warrior (2014)

“Cushing’s Disease is a wretched, often time debilitating disease. It robs you of so many things, seemingly all at once: physical strength, mental capabilities, emotional stability, self-esteem, sense of self-worth, relationships (as Cushies tend to be reclusive), appearance, ability to maintain control over your body, stamina, and an overall sense of well-being. It disintegrates your health – many Cushies have heart and respiratory failure; liver, pancreas, and blood disorders; endocrine, intestinal, and lymphatic concerns; and we all experience psychological problems.

With Cushing’s Disease, you become a person that no one, including yourself, enjoys being around. Your entire persona changes. The person you used to be – the happy-go-lucky, smiley, enjoyable, pleasant, stable, intellectual person – becomes trapped. That person sits inside the Cushing Monster you’ve become – screaming, crying, begging relentlessly for a way out; for a release; to be set free. But this is not possible. You literally become a prisoner in your own body. Your stifled cries for help go unheard, unknown. The Cushing Monster takes over, making you say and do things your normal self would not. You yell and lose your temper when you’d normally handle the situation calmly.

You fumble, you forget, you lose coordination. You feel like a big ogre. You used to have grace and energy. Now, you’re winded just from getting dressed or showering. You feel like you’re slipping away, spiraling out of control…and there’s NOTHING you can do to stop it. You get angry and impatient so quickly. People start to wonder – what’s wrong with you? They wonder why you’ve become so sedentary and unsociable? Why did you lose your spark? And worst of all, they wonder – what did THEY do wrong? They didn’t do a damn thing. It’s not them. It’s really not even YOU. It’s Cushing’s Disease.

The disease makes you question life in general. Should you continue on…or should you take matters into your own hands and end the chaos? But that doesn’t solve the problem. That’s selfish, and only creates more (and eternal) misery. But that doesn’t stop the thoughts, unfortunately.

Then, there’s the build-up of “clutter”. Your mind feels like the aftermath of a tornado. All your stuff – your life as you once knew it – is scattered…EVERYWHERE. And how in the world are you going to find it, gather it all up and put it back the way it was? Can that even be done?? And when anything around you (outside your mind) starts to “clutter”, you can’t handle it. It’s too much. Too stressful to deal with. So you shut down. Or cry. Or start verbally attacking those you love.

Those you love…how do they continue to love you in this condition? WHAT make them hang on and stay with you? What makes them even WANT to TRY and understand? I think, perhaps, it’s the hope that the old you will somehow, someday return.”

Harsh words to hear and read. Trust me – they were even harder to write.

I am blessed to have an amazing husband and two beautiful children – all who understood, cared, and gave a damn to see me through the worst of times. They, along with the rest of my family and friends, deserve a medal or sainthood for putting up with this disease and being my arsenal when I was running low on ammunition to fight this fight. God bless you all. God love you all – I know I sure do.

My Family – 2016

“Safe & Sound”
(feat. The Civil Wars)

I remember tears streaming down your face
When I said, “I’ll never let you go”
When all those shadows almost killed your light
I remember you said, “Don’t leave me here alone”
But all that’s dead and gone and passed tonight

Just close your eyes
The sun is going down
You’ll be alright
No one can hurt you now
Come morning light
You and I’ll be safe and sound

Don’t you dare look out your window darling
Everything’s on fire
The war outside our door keeps raging on
Hold onto this lullaby
Even when the music’s gone
Gone

Just close your eyes
The sun is going down
You’ll be alright
No one can hurt you now
Come morning light
You and I’ll be safe and sound

Just close your eyes
You’ll be alright
Come morning light,
You and I’ll be safe and sound…

Don’t Tread On Me

Cushing’s victims often have their thoughts and emotions preyed upon by nothing other than the disease itself. We tend to think things that aren’t necessarily true or real. Bad dreams that were freakishly realistic seem to have control over our mindset the next day. We are suspicious of everyone’s words and intentions. We take everything deeply to heart – what someone says to a Cushing’s victim is always (in our ears) meant as a personal attack. This way of thinking and feeling is especially true prior to treatment. But how much of it lingers on afterwards?

For me, this “department” has improved significantly. Sure, I still find myself questioning the thought process behind people’s actions or choice of words, but I no longer think of it as a full-out “shock and awe.” I try very hard not to look too much into the meanings of what has been said; 95% of the time, it is what it is and nothing more. But there are still days when I run into people who are So fUll of thEmselves, and out there for nothing other than pride or revenge or slighting others just to make themselves look or feel better…and it makes me angry. And it hurts.

I had a friend at a former office that I worked at. I could lean on her with any of my problems and knew that I could speak to her in confidence. Then things changed within the office. There was a change of hands, a change of employees, and eventually it seemed a change of heart on my former-friend’s behalf. She was no longer a pleasant, sweet person. She was like a mean ol’ bobcat who pounced on anything that moved. She constantly was in fear of someone else in the office taking over her job, so she defended her position ferociously – to the point where no one felt comfortable on the days when it was necessary for us to help lighten her workload. We would be accused of trying to “one-up” her and take her job from her. Of course, nothing was farther from the truth. It was an uncomfortable situation that only got worse.

To make things even hairier, another employee apparently felt threatened by my work performance, and did not make life easy. I felt that I didn’t have a leg to stand on at that office any more, so I began seeking work elsewhere.

Long story short, I found another job, and on the day I gave my 2 weeks notice, my “friend” approached me and delivered a supposed message from our boss that I was to leave the premises immediately. I was confused. I had just talked to our boss and shook hands with her…I thought we were on good terms? I quickly gathered up my things and left, without so much as a nod, much less a goodbye, to anyone.

Fast-forward 2 months…I got a text message yesterday from this former friend. She needed some information from me. “Hope you are doing well!!!” is how the message began. Hmmm…seems friendly enough. Then I got to thinking, “Geez, maybe I jumped the gun a little bit. Maybe I was being too dramatic about that whole incident at the office. Maybe I only thought everyone was ganging up on me and wanting me to leave.” And of course, being the hopelessly forgiving person I tend to be (or maybe I’m just being hopelessly naïve), I responded. I wasn’t overly enthusiastic. I gave the information she needed and proceeded to send my well-wishes, and ask how things were going. Here’s what she said:

 

That’s right. Nothing. And all I could think of was, “You bitch.” (Sorry – but I can’t censor my conscience.) That was all I was ever good for, apparently. Giving her what she needed so that She coUld look tErrific. Maybe it wasn’t my Cushing’s mind afterall. In fact, looking back, maybe my boss didn’t want me to leave the premises immediately. Maybe it was all a ploy to make me look bad (like I turned in my notice and then sneaked out), while “someone elSe” continUEd to sparkle like the diamond she thinks she is.

I need to get to a place in my life where I am surrounded by good and positive people. I think, as someone who has lived with a malicious disease and has been through enough hell for about a dozen people, I deserve good and positive people in my life. And as I sit here and think about it….I do have those people in my life. I have a wonderful, caring, supportive, loving husband who lives and breathes to take care of me and our beautiful, smart, funny children. I have an incredible extended family that always has my back (and is currently growing!). I have terrific friends that I have known for decades, or just met this year. I shouldn’t let that one person who used to be important in my life ruin a perfectly good reason to celebrate who I am, where I’ve been, what I’ve accomplished, and all the incredible people who have been there along the way with me.

It’S time to take oUt thE trash.

 

Prayers for Joey

Today I started following the blog by Rory Feek, a member of a country music duo, Joey + Rory, that my husband and I enjoy very much. We have been following their success on TV since they were on “Can You Duet.” The other member, Joey (Rory’s wife), has terminal cervical cancer and is living out her final days at home under the care of hospice.

Reading the blog and watching/listening to the country music video the due made in 2012 (“When I’m Gone”) really puts life and love into perspective. My heart just breaks for all of them, especially for that beautiful baby girl.

http://thislifeilive.com/

“When I’m Gone” music video

God speed and God bless.

 

 

2015 in review

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,300 times in 2015. If it were a cable car, it would take about 22 trips to carry that many people.

Click here to see the complete report.

Cushing’s Website!

I’ve had a tremendous amount of visitors to this blog from my website…I don’t know why it never occurred to me to advertise my website on this blog!

If you or someone you know is suffering from the devastating effects of Cushing’s, please visit:

http://coulditbecushings.weebly.com

My website is full of valuable information about the disease, and steps you can take to seek proper treatment.

Battle Scars

I’m a hunter. I love to hunt. It’s something that was bred within me, passed on from my father and my grandfathers. It’s something my husband and I connect on and enjoy as a mutual hobby. We also enjoy target practice, and I’m a great shot when it comes to clay pigeons (if I do say so myself).

Since my transsphenoidal surgery in August 2014, I haven’t done much hunting or target practice. Last year’s small game, fall turkey and deer seasons, I played the role of “cheerleader” on the sidelines. This September was the second Canadian goose season in a row that I’ve reluctantly missed. Because of the delicate brain surgery last summer and the hysterectomy and seroma removal surgeries I had this year, my body wasn’t fit for the recoil of a gun of any kind. I did get a chance to gobbler hunt this spring (which did not yield a bird), and I did some low-key target practice with my .22, but I have been playing it safe for the most part. I’ve really missed it.

This week was the opener for squirrel season. Besides geese, squirrels are a favorite of mine. They can be elusive and stealthy – a real challenge – hiding and leaping amongst the treetops above, unbeknownst to you. Or, they can be oblivious and naïve – completely caught up in their autumn scavenge for winter sustenance, feeling safe within familiar surroundings, unaware of your presence only feet away at the base of that big beech tree. Squirrel hunting is always fun.

My husband and I decided to take a walk into the woods this Friday and see what kind of a squirrel day we’d encounter. After some hemming and hawing, I decided on taking my great-Uncle Joe’s 12 gauge Winchester single shot. What a beauty that baby is….and boy does she pack a punch!

“Foxy” bruise!

As you can see by this picture, yes, I did bag a fox squirrel (that’s his tail on my arm). But if you look a little closer…that’s a heck of a bruise on my right bicep!

Let’s make note of a couple things:

(1) I’m well aware that the bruise is on my bicep and that’s not where the butt of the shotgun should rest when shooting. However, the gun packs such a punch, that it slipped after the recoil and caught my arm… twice. (Ouch – lesson learned!)

(2) Would a “normal” person bruise this easily after shooting a gun with a nice kick? I mean, let’s be honest, it’s not like I shot an M-1 Garand. (And if I had, there would have been no tail left for me to put on my arm for the picture!) It’s obvious that the easy bruising characteristic of Cushing’s Disease is still with me. My question is – does the easy bruising stay with me because I had Cushing’s, or is it present because of the steroid replacement drugs that I’m still taking?

These “battle scars” that Cushing’s has left me with tend to be on the irritating side. Some of these scars fade, but never really go away. Like my buffalo hump – I can still see the slightest remnant. Will it ever completely go away, or will I be stuck with it for life? The bruising is obviously an issue; and to further put things in perspective, I still have the bruise on my leg from March 2014 that was so appalling and amazing to my doctors in Cleveland. (Remember this?)

Cushing’s certainly does leave physical, emotional, and mental scars on you. But God also makes us Cushing’s victims tough. Tough enough to withstand the blows, tough enough to withstand the insults, tough enough to withstand the fear, tough enough to withstand all that comes with the disease…but best of all, He makes us tough enough to survive and conquer. “Rejoice in hope, be patient with tribulation, be constant in prayer.” Romans 12:12

 

Still addicted…..???

I was going through my stats on this blog for the past few months, and found it very interesting that the post with the most views is “I’m a recovering addict…” !!! I’m not sure – are that many people out there searching by “addict” tags and happen upon my site, or is it the “recovering” tag that gets their attention? Either way – thank you for visiting my site! And here’s another “addiction” story for you!

Yes, I am still addicted – rather, I am still in need of steroids. I certainly needed them to maintain my strength during my recent wound-vac episode following the seroma surgery, which was due to an infection from my hysterectomy surgery. (Bad luck, or bad/unclean practices by the OBGYN surgeon? You decide – I know I have.)

Anyway, I had the wound-vac removed on September 14th – what is left of the incision is healing nicely, with the help of a dressing called ‘adaptic.’ That same day, I developed a nasty upper respiratory infection (that is still hanging on, by the way). Then, of course, my family had to endure the funeral of my uncle last week…also quite stressful. So the past few weeks have definitely not been the right time to try and wean off my meds.

With things winding down over the weekend, I decided to withhold the steroids… mostly because the winding down part caused me to forget to take my regular dose of 10mg a.m. on Saturday! By the time I remembered, it was late in the afternoon. In fact, my husband and my kids and I had just returned from a 2mile walk in the woods (which I accomplished with no problems!!), and I knew if I took my meds then, I wouldn’t be able to sleep that night. Since the labs aren’t open on Sundays, I withheld that day as well and drove my sleepy butt to the lab by 8a.m. yesterday morning for bloodwork. I should have ACTH and cortisol level results hopefully by the end of the week.

Truth be told, I harbor a little fear that my body is still not ready to cease meds. I have been so wiped out over the past few days. In fact, yesterday afternoon I took a nap and slept so hard that when I was awakened by the phone ringing, I was completely disoriented and weak enough that I couldn’t pick up the phone in time. Then I was crabby because I had been woken up, and it just wasn’t pretty.

My point is, if my body were able to make enough cortisol on its own, I don’t think I would feel so “blech.”  Or, on the other hand…..are these just withdrawal symptoms that are less harsh than before because I’m on such a low dose of steroids? If this is withdrawal (and I know it only takes 3-4 days to get over it), then why would I want to go back to taking the full 10mg everyday until I hear the results of my bloodwork? Because if the results are good and I get word that I can discontinue steroids, I would have to go through withdrawal all over again!

I go back to work this coming Monday. At best, I have the weekend to recover from withdrawal if I can discontinue my meds. So I have made an “executive decision” to cut my regular dose in half. Here’s hoping 5mg will sustain me!

The ultimate goodbye

Source: The ultimate goodbye