I've Been Busy: And I have some things to report on

Hello dear friends and readers!

It has been a while since my last post, but I’m going to try and do better.  I’ve been a busy boy!

First, let me inform all of you of a couple of things I’ve come across.  First, let me say that I have a friend who came into my life by phone who is a cured Cushie and sadly discovered, to his dismay, that problems don’t just disappear when an ATCH tumor is removed.  Although we Cushies do lose all or most of that weight gain we had as Cushies, other damage still remains and if things are strained to the breaking point with friends and family sometimes those relationships just aren’t recoverable.  It was because of those things that I was brought into his life.

Well, we made a project out of researching those issues, and he made a project out of researching Cushing’s to, perhaps, gain more insight in my condition, where there is no visible tumor obviously causing my problems.  One of the things we did find out is that it is possible, though there doesn’t seem to be a proven case yet, for a problem with the HPA axis feedback systems, most likely a problem with the sensors, could be behind some cases like mine.  I will mention, though, that my diagnosis is no Cushing’s Disease and my endocrinologist thinks I have a micro tumor which is slipping between the cracks of my MRI scans, a more common happening than most folks realize.

Well, in the course of our research of the medical literature we stumbled onto one article where the doctor implied Cushing’s may be much more common than officially thought.  So I contacted the doctor, who lives in France to find out if that was his position and he sent me back what appears to be an article he has, or is going to submit for publication.  The contents astounded me!  It is a review of research which has been done in Europe on the incidence of Cushing’s in the Diabetic population, the papers he reviewed had an incident rate when averaged together of about 1.5%, which is well above the official rate on an order of magnitudes.  Now that we knew where to look, we dug up two more papers, one out of the UK and another out of Turkey, which had even higher rates.  In the case of the UK, they found a rate of 10% of Diabetics tested had Cushing’s.  The Turkish research test obese men and found a similar rate of 10%.  And all of those used the Dexamethasone suppression test as their standard for diagnosis, which misses a significant number of cases with Cushing’s!  One of the Western European papers and the Turkish paper recommended screening for Cushing’s for all of the populations studied as a matter for course.

In the course of our hunt for all things Cushing’s we stumbled across a study on the efficacy of treating Cushing’s with Cabergoline, a D9 agonist.  The study was quite favorable towards its use because it seems to be quite effective with a certain subset of Cushing’s sufferers.  That had particular significance for me since I am on a D9 agonist and my cortisols have all tested in the upper normal range with the exception of one occasion, since I’ve been on that medication.  The one occasion was when I collapsed in an intermediate care center and they called an ambulance, on that occasion I was diagnosed with adrenal failure, given Cortisef and sent home after I came out of it and they were sure I was stable.  That opens up some possibilities right there.

Also on a personal note, in early spring I had a realization hit me like a falling brick wall.  My back is still degenerating and it is become more difficult to walk.  I can only stand up for short periods of time and walk a short distance before the pain becomes overwhelming, and that even with pain medication!  Without it I can barely make it to the kitchen at the front of my home and back to get a cup of coffee, and sometimes I don’t even make it that far.  If I want to cook, say an egg, then I better take the pain medication before I try that, and anything which requires more time?  Well, I put a stool in the kitchen for that.  The realization was that I was giving in and letting it take its course without a fight.  So I decided to fight!

Earlier, last winter in fact, there’d been a discussion between some of us on a Cushing’s forum where a number of us complained that on disability we simply can’t afford quality food, that is, fresh fruits and vegetables, on what we are given to live on.  Because of that we are pretty much forced to live on pasta dishes and the like, which makes our weight gain even easier.  Well, somebody very knowledgeable on nutrition suggest that we garden.  When I realized what I was doing by giving in to my back problems and recalled that online conversation I decided it was time to go after two birds with one stone.  So with the help of my family I started a small garden this year.

We’ve left an old broken office chair outside to serve as a stool for me to use and, after some experimentation I found that container gardening is the best way for me to go.  So, we’ve only bought several packs of tomatoes since my vines of beefsteak tomatoes started bearing their fruit.  True, they aren’t that productive, but this is my first year at it and here at the late season they are popping out since I got my fertilization scheme right.  But they have pretty stably provided me enough tomatoes for my sandwiches to cut down on the food bill some.

I’m looking to the long run, which means I’m using heirloom varieties instead of the easier to grow and cheaper hybrids.  I can save the seed from the best plants among my heirlooms and have reliable seed to plant next year, or later, if I choose to grow more varieties an my small space in the yard of the duplex I live in can really handle.  That means my seed cost will go down in the long-run as I build up a nice variety of stock I and my family can use and rely on.  It also means, since I am using containers, that my initial high cost for soil will go down in a few years and all I’ll have to do is replace some of the nutritional factors as I go along and reuse my potting soil.  By the way, although we didn’t do it this year, my plan is to use organic growing methods from now on.  I have already planned out next year’s garden and gotten most of the seeds I plan to use.

I’ve also started a New Channel on YouTube, Disabled Gardening.  I haven’t uploaded my first video yet, though I have shot most of the video footage for it, I just haven’t put it together and narrated it yet.  I intend to use it to both chronicle my gardening and to offer tips on how those of us who are disabled or otherwise disadvantaged, can grow gardens and feed ourselves, right now in an urban environment where it is wise to also make our gardens appealing in appearance as well.

So there you are.  That is what I’ve been up to.  I hope you’ve enjoyed my story.

Update.

Hello my dear friends and readers:

I know it’s been awhile since my last post.  Several things have happened.  Because of continued back problems I went to my orthopedic doctor and it turns out my spinal deterioration has increased.  I now have three spinal joints in deterioration instead of just the one.  Those would be the last to lumbar joints and the first sacral.  This is not that unusual in patients with Cushing’s.  Both the leaching of calcium from the bones and the strain from the weight combine to cause the problems, which are pretty painful.  When we add the swings of my cortisol into Addison’s territory part of the time and I get a double whammy.

I also have another problem which I began to feel when I took my airplane trip back in April.  That would be bursitis in the hips.  Because of the Bursitis it is difficult to sit most of the time and it is also painful to rise from a sitting or lying position.  Given I weigh 366 pounds is it any wonder I developed inflammation of the bursas in that area?

Since then I’ve been looking into more research on Cushing’s, its causes and effects.  I’ve also looked into research suggesting the incidence of Cushing’s is much wider than the medical community realizes.  Some of the things I’ve learned will be presented in other posts.  However, I still do have to put up with the new problems and adapt, which is taking some time.

So keep an eye out for what’s ahead.

Back Pain and Cushing’s

 

Sorry for not posting something for a while, but I’ve been kind of busy.  My wife, Debra, and I took a trip to see some friends in Texas.  While there this picture of us together was taken:

This is probably one of the better pictures taken lately which showcase my truncal obesity really well.  And that is part of the why on today’s subject.  One of the effects that Cushing’s has is that it causes back deterioration and consequent pain.  There are several mechanisms to the end.  One obvious one is the stress the weight places on the spine.  The other two are that Cushing’s leads to general bone deterioration often causing osteoporosis and deterioration of discs in the spine on top of that.

I do have spinal deterioration and a ruptured disc to add to the mix.  Although I started having back pain as far back as the early 2000s, it was in 2009 that I really had the extent of the problem brought home to me when I was struck by back pain so severe that I was bed ridden for a month and spent several more in a wheelchair.  It wasn’t until I managed to bring my weight down enough to fit into an MRI that the ruptured disc was discovered.  It presses onto the sciatic nerve.

At the time of the 2009 attack I was refused hospitalization on the grounds that I was not a candidate for surgery, though how they came to that conclusion without a proper evaluation is beyond me unless they were basing that opinion on my having a large Abdominal hernia from a previous surgery.  So on that occasion I was crammed screaming in agony from the pain into our small car and sent home, after my doctor had sent me to the ER for admission in the first place.  And, yes, I’m harping.

A couple of days ago I woke up in serious pain and gutted it through the first day hoping it would go away.  But the next day I went to see a doctor and have been taking a painkiller and a muscle relaxer which both make me kind of sleepy.  That’s one of the things which can be done.

There is also what are called TENS units, which use a small amount of electricity to neutralize the pain impulses sent up the nerves.  There is also surgery of course, which I think the doctor I saw thinks may be necessary since he’s asked me to follow up with my orthopedic surgeon.

Sadly, the options are growing fewer.  One of the research boards tasked with recommending standards of care under the new healthcare act in the United states recommended a few months back that TENS units should no longer be used in the treatment of back pain.  That’s sad because they are a relatively inexpensive mode of treatment. And it is being recommended that access to narcotics for those in chronic pain be even further restricted.

For a Cushie back pain can pretty well be counted on at some point if one’s condition remains untreated for any real length of time.  Just the strain from the added weight will cause it if nothing else.  Your doctor will determine if you need to be referred to a specialist, more often than not an orthopedic surgeon who will evaluate your condition and decide if surgery is an option or not.

We’ll see how it goes for me this time around.

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:

http://www.riversideonline.com/source/images/image_popup/sn7_stretchmarks3.jpg 

http://www.dermnetnz.org/systemic/img/s/cush1-s.jpg 

http://www.skinsight.com/images/dx/webChild/striaeStretchMarks_16044_lg.jpg 

http://o.quizlet.com/h0q1jDE1x0sv5LUECmjMzw_m.jpg 

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.

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:

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. 

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.