Friday, April 12, 2013

A tale of Stretch Marks!






Everybody hates stretch marks.  We get them when we gain weight.  We get them when we get pregnant.  And, oh, how unsightly they are!  But guess what?  They can be far worse as any Cushie knows.  Here is a meme I picked off of Face book which shows fairly normal postpartum stretch marks, the most typical for women:



And the worse a woman is likely to see if they maintain anything like normal weight is here:

Sorry about the language.

  Those are more typically called striae and there’s a reason a woman will end up with those during pregnancy and keep them post-partum.  When I sat through anatomy and physiology class the professor teaching the class revealed something a little unexpected at the time about pregnancy.  During pregnancy women typically experience a rise in cortisol levels and actually develop Cushing’s during their pregnancies.  The body’s response serves the purpose of providing tissue mass to support and protect the developing child during the pregnancy.  Consequently women will develop stretch marks during the pregnancy and keep them after.

However, for those who suffer from any variant of Cushing’s the situation typically becomes worse.  The stretch marks get bigger, wider and will often turn anything from pink to purple.  One of my friends let me use this image of her striae showing how wide they can get:



And here are links to more images of Cushing’s striae:





What can you do about the striae, nothing much.  Put skin lotion on them and accept them for what they are, a symptom of a much bigger problem.  If you’re big enough that you will be losing a ton of weight when you’re cured you may be a candidate for having some skin removed, that will remove most of the striae with the trade-off of some surgical scarring unless a really skilled plastic surgeon handles the procedure.  The striae just make us resemble our namesakes, the zebras, more than most folks with rare diseases.


Tuesday, January 15, 2013

Cyclical Cushing’s Syndrome



Hey there everybody!

Today one of my Facebook friends posted a link to a post on the CSRF website about Cyclical Cushing’s syndrome:


You have to wade through the usual Doc speak, but it’s worth the effort.  To summarize, Dr. A. Brew Atkinson is part of a group who noticed that some patients were cyclical way back in the 1950s and has been studying the phenomena ever since.  What they concluded is that a significant number of Cushies, upwards of one third in one sample of Cushing’s patients were cyclical, making it more common than doctors think.

They also noted the difficulty diagnosing for several reason, one being the need to do extensive testing, which is expensive.  Another reason is that cyclical patients do not respond to some tests, such as the dexamethasone test, in the expected ways.  That is something those of us with the disease know all too well!  So they suggested those patients with Cushing’s features yet who don’t have the expected test results should be considered for more extensive testing.  They also suggested certain testing, such as AM long-range urine or long-range serum cortisol testing with a suggested 28 consecutive day period which will catch most of the known cycles they’ve documented.

As noted, that is kind of expensive and don’t be surprised if insurance companies balk at covering the cost.  In my case we just happened to catch both peaks and troughs in the standard testing done, so I know I’m a cyclical Cushie.  What I don’t know is what pattern I fit because no testing occurred to establish my pattern.

If you didn’t already read the article please read the article if you are trying to find out if you or a loved one has Cyclical Cushing’s or if it was suggested to you.  And if you or your loved one may have it please persist in getting the right testing done. 

Friday, December 14, 2012

Cushing’s And the Immune System



Greetings again my friends and readers!

Well, it has come time to talk about another aspect of Cushing’s, compromised immune system response.  Most old time zebras know well enough how vulnerable they are to opportunistic infections.  That’s one of the things long term exposure to steroids do is to make the immune system weaker and less able to ward off disease and infections.  And what is Cushing’s syndrome but long term exposure to steroids?

I was forcibly reminded of that fact this past week.  To set the stage I was having some problems with what seemed to be a stomach bug of some sort.  So I went to a clinic not far down the highway from where I live.  After seeing the doctor and being told I was suffering from “food poisoning” I waited out in the waiting room for my wife to pick me up since she’d run out to run a couple of errands real quick while I was in.  I collapsed right there in the waiting room and was rushed to the hospital where I remained until yesterday.

Although there are still some questions since I didn’t test positive for the flu or bacterial infection, it was decided that I had been brought low by a viral infection which affected more than one system and also severely dehydrated me in the process.  Right up to the last minute before release I was pumped full of antibiotics and fluids.

That is one of the things those of us who suffer from Cushing’s have to be aware of and watch out for.  Our immune systems become less able to cope with invaders over time and one can easily get into in trouble if one doesn’t stay on top of things, like I didn’t.  That means not waiting until what seems like a small problem gets out of hand.  So one has to treat almost every sniffle as something serious, don’t wait around to treat it and be ready to get help at the first sign of trouble.  I know doctors and insurers get a little bent out of shape by us “hypochondriacs,”   But let me tell you three days stuck in a hospital bed eating the low calorie diets us fat folks inevitably get put on in the vain hope we’ll lose weight is no fun.

Another thing I found while checking the net for this post was multiple reports on some research done which is another reason to be careful.  It seems there is some evidence that infections can cause the production of cortisols to go out of control in a victim of Cushing’s with fatal results.  Since all I could access were abstracts I couldn’t get down to the details.  So there’s another reason for anybody with Cushing’s to be careful, very careful.

That doesn’t mean a Cushie can’t live a reasonable life on that score.  Just exercise common sense and care.  Do that and you can generally avoid ending up in as extreme a situation as I ended up in.

Monday, December 10, 2012

My first Cataract Surgery Is Done




Greetings again my dear friends and readers!

My first cataract surgery is done.  I’m a week post-op as of today and everything went fine.  There were no complications and my sight is already better.  I have the second one done next week.

The way the process goes is that the patient has to scrub their eyelids with a special pad every night and start adding medical eye drops to their eyes starting two days before surgery.  When the patient goes into surgery the staff places him or her under sedation and adds more drops to the eye, including those which will anesthetize the eye for the surgery.  The doctor then makes a tiny incision into the eye and breaks up and removes the affected lens with a special tool.  The doctor then replaces the lens with an artificial one.  Be advised that insurance generally will only cover the cheaper monofocal lens, so you would have to pay out of pocket for the multifocal ones.  It’s all over in a few minutes and I was in and out of the clinic in a little over an hour.

After the operation there’s no more scrubbing the eyelids as this can cause the incision to reopen with disastrous consequences.  The patient wears a guard over the eye the first day and then uses it for sleep and naps.  The drops continue afterwards, in my case for about six weeks.  One avoids lifting heavy things for at least the first week after and avoids bending over or any other activity which may increase the pressure in the eye.

It’s great to be getting it over with.  I’ll let you know how it works out when everything is done.


Thursday, November 29, 2012

Hey there my friends and readers!

This is just a short post to let you know what is going on.  This coming Monday, Dec. 3, 2012 I will have my first cataract surgery.  Then on the 17th of December I'm supposed to have the other one done.  So I am going to stay clear of the net for at least a few days after surgery to give each eye a chance to heal properly.  

Once I'm past the surgeries I will be back.  My wishes for a blessed holiday season to all!

Stanley Loper

Thursday, November 22, 2012

The Moon Face



Greetings from the Original Zebra!

Take a look at the following picture of my mother in her teenage years:
 


This is probably one of the best examples of another symptom typical of Cushing’s syndrome, the round, or “moon” face.  The moon face is another phenomenon which often accompanies exposure to high levels of cortisols and is a sign which differentiates the victim of Cushing’s from other morbidly obese people.  Here is a picture of one of my friends on Facebook who has given me permission to use her images:



Here she is now as a confirmed victim of Cushing’s:



This is more typical of how the round face will appear.  This lady gained over a hundred pounds in a matter of months when she developed Cushing’s.  When you contrast it with my mother’s:



It is easy to see how Cushing’s can be a little hard to spot in some stages.  Yet my friend, unlike my mother, is a confirmed Cushie.  So we can see how this symptom of Cushing’s can fall in quite a range.  Yet it is still recognizable wherever it falls within its range.  Mother went untreated and from the first picture of her she suffered from "Mild" Cushing's all her life.  Yet she died at age 65 from the ravages of the disease.

Today’s post was composed on Thanksgiving Day, so here’s to all my friends and readers from this moon face. 



Happy Thanksgiving!