Hello Again!

Hello Everyone!

Today my legs don’t seem to have the strength to go out and do some of what’s needed in my garden, so I have the time to blog a little.

To catch up, the treatment I’m getting for my Cushing’s, a D9 agonist, is working slowly, which is what the doctor wants right now.  My weight is on a downward trend, slowly, but that appears to be one of the important things the doctor is using to gauge the best way to proceed without causing an adrenal event.  I’m on board with that considering how painful such things are.

I’ve been physically active, working with my garden to the extent I can.  The result has been a good harvest of tomatoes and peppers lately, too much for me to eat!  Ah, but the variety and taste!  It’s been wonderful to have and use to make sure I’ve got some real nutrition in the diet were are forced to have around here.

My kidney function is kind of low right now.  Not all of the tests ordered are posted to my portal yet, so I don’t know yet if it may be an infection causing the problem, or need to look to something else.  I’ve had several infections, which is kind of strange with this one considering my wife is 800 miles away looking after her mother right now and I’m not doing anything which should cause an infection.  I guess it’s just one of those things.

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.

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.

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.

Wikipedia On Cataract Surgery. 

Cataract Surgery, From An Opthalmic Surgeon's Site. 

BLA

Thanks for waiting dear friends and readers.  Since this is also a chronicle of my journey with Cushing’s syndrome I’ll take just a moment for an update.  My sonogram came up negative for any tumors.  That doesn’t mean there weren’t any micro tumors there, just that if there were they were too small for the scan to visualize.  They did find another problem which will require me to go back to my urologist.  So my endocrinologist wants to do more testing to see where things are at.

Surgery is out, of course, since they couldn’t see anything to justify it.  There is only one surgery which is often done in cases where adenomas can’t be located, that’s the bi-lateral adrenalectomy or BLA for short.  The BLA is performed when they find tumors in both adrenal glands, in the case of recurring pituitary tumors and in the case of ectopic tumors.  The BLA is simply the removal of both adrenal glands.  The idea in the case of ectopic Cushing’s and recurring pituitary tumors is to shut of the production of the cortisols at their source.  Since tumors generally produce ACTH, the hormone which signals the adrenals to produce cortisols that is considered the logical way to deal with the problem in many cases.  After the two glands are taken out the patient is put on hormone replacement therapy or HRT for short.

The adrenal glands sit on top of the kidneys and are protected by the lower ribs.  Not many years ago the surgeon had to break the ribs over the adrenal glands to get at them for removal.  But now days, at least here in the United States of America, a new method is used to remove them.  The surgeon uses a laparoscope which requires relatively small incisions and which snakes up under the ribs to get to the adrenal glands.  Another great aspect of this kind of surgery is that the patient isn’t placed on their stomach for the procedure, which is contraindicated in my case.  The advantages of this kind of surgery are low recovery time with less pain and less time in the hospital.

After the surgery the hormones which the adrenal glands produce have to be replaced or there will be trouble.  So the patient goes on HRT which involves testing and adjusting the hormone levels through time.  The patient is also subject to going into Adrenal failure (AI), which I’ve discussed in two other posts, and having to seek emergency treatment for that problem.  So a BLA is a surgery with serious consequences and the patient and their family have to be familiar with what to watch out for and always ready to take them for emergency treatment.

Although one has to be watchful, the surgery does cure the Cushing’s and the patient will generally lose weight, even achieving normal weight in some cases and they will have a more normal life when compared to what they had with Cushing’s.  So while it is a procedure with serious consequences, including death in some cases, it is a surgery to consider in many cases.  According to a study done by doctors in Oregon, it is a surgery which can result in a good quality of life for most.  I’ll link the study at the bottom.

http://home.comcast.net/~staticnrg/Cushings/QualityOfLifeBLA.pdf

Addison's Disease

Addison’s disease is the mirror image of Cushing’s syndrome, so why write about it in a Cushing’s blog?  In my case my cortisols swing so low I’m actually Addisonian for periods of time as evidenced by a presentation in an ER in a state of adrenal crisis and some labs I have documenting cortisols in that range.  I recently met two other folks in the same situation on Facebook so there are folks out there in the Cushie community for whom this is a relevant subject.  So let’s give it a whirl.

As I mentioned in the opening, Addison’s disease is the mirror image of Cushing’s syndrome and Cushing’s disease.  It is a condition where the cortisols are too low and is lethal if left untreated.  The pathology may be autoimmune disorders and it is often associated with them, trauma, or infection.  The symptoms may include:

·        Changes in blood pressure, generally a lowering of the blood pressure.

·        Chronic diarrhea, vomiting, nausea resulting in loss of appetite and weight loss.

·        Darkening of the skin in places causing a splotchy look.

·        Paleness

·        Extreme weakness fatigue and sluggishness.

·        Mouth lesions inside the cheek.

·        Salt craving.

·        The patient may also develop vitiligo, an abnormal whitening of the skin in patches.

The lab values associated with Addison’s are:

·        Abnormally low cortisols.

·        High potassium levels

·        Low sodium levels.

The victim of Addison’s disease may also suffer from autoimmune disorders such as Hashimoto’s disease and may also suffer from pernicious anemia.  Addison’s is also more common in frequency than Cushing’s.

Sufferers of Addison’s may also go into adrenal crisis, which I wrote about here:

Adrenal Crisis 

For the person whose cortisols swing both ways this means we get the worse of both worlds.  I have pernicious anemia and the compromise to bodily healing which takes place when the cortisols are so low makes my back situation even worse.  I also suffer from a very rare manifestation of Rheumatoid Arthritis, Recurring posterior scleritis, an autoimmune disease.  As I mentioned earlier I’ve had several bouts with adrenal crisis.  I do have a little tanning going on, but it’s mild and it is splotchy.

Those with Addison’s have to be very careful because their immune responses are compromised, so they need to contact their doctors in any of the following cases:

·        Infection.

·        Stress.

·        Injury.

·        Surgery.

Their medications may need adjusting.  It goes without saying that a cyclical Cushie or Addisonian with extreme cycles needs to do the same.

Although I did mention that Addisonians are more common than Cushies, they are rare as well.  Their situation is serious and they need all the help and support they can get from family and friends.  Just as with Cushing’s, family and significant ones should become familiar with the nature of the disease.  In the case of the extreme emergency which constitutes a crisis it is especially necessary for family, friends and coworkers to know the symptoms.

Addison's Disease at Wikipedia 

Addison's Disease at PubMed Health