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.