So, How's That Treatment Going?

Since it's been awhile since we talked about our treatment we thought our online friends might want to know how things are going.  We went to the doctor just last Friday, 01/30/2015.  I'll get to what we found out in a minute, but first a review of the treatment we started.

Back in October of 2014 we reported among a number of things that we began a course of treatment with a medication of the same class as one which is being evaluated to treat Cushing's, that is Cabergoline.  Specifically it is not cabergoline used in my case, but another D9 agonist which is also a wider acting drug.  a couple of years back we underwent surgery to remove a tumor we hoped might be the culprit for our Cushing's though it is sited in a place more typical for a Cushing's like disease known as MENS, or Multiple Endocrine Neoplasia.  MENS is a Disease in which the victim presents with multiple tumors which secrete excessive amounts of hormones, cortisols being the most common.  It's not a nice disease to contemplate having as in many cases the tumors are cancers.

Within days we entered the local emergency room with agonizing muscle spasms only to find out that though we had removed a tumor suspected of causing Cushing's and prophylactically been given some corticef to head AI off, the local ER wasn't allowed to test for AI (Adrenal Insufficiency) because it wasn't considered an emergency situation, a really dumb idea given this patient had informed the staff that the possibility was on the table because of the surgery and that AI can kill in a hurry.  So the attending doctor pumped us full of another kind of steroids and muscle relaxers until the cramping stopped.  Then we were sent home on a very high dosage of prednisone and told to see the attending surgeon in  couple of days.

On the day of our appontment with our surgeon we tested our blood sugar and the home tesotr informed us that our blood sugar was high, no figure, just too high for the machine to test.  Since the appointment was an hour away and the office in the same building as the hospital's ER, we kept the appointment.  Naturally the doctor sent us down to the ER, where we were found disoriented on the way by a nurse who was off duty on break and she rounded up a wheelchair and somebody to take us down to the ER where we were admitted with a blood sugar of 608, a deadly situation.  When our condition was stabilized we got a referral to the only local physician we trusted enough to deal with the situation though it was outside his specialty.

Because that doctor felt our neurological system had been compromised he started us on two medications to deal with the situation, Gabapentin and Ropinerole.  We are sure the Ropinerole was a good call because we'd already started having some trouble with some mild restless legs style symptoms but hadn't reported them yet.  So we were on the way there and the ER treatment just probably hurried the situation along.  That was back in 2012 and I haven't had a high cortisol test since.  I've had a couple of very low ones, but no high one.  What made that really frustrating is that during 2013 we did an evaluation with the object of putting us on one of the two new medications to teat Cushing's and all of our test results came back on the high side of normal.  What is more certain symptoms of Addison's I have increased since.  So we couldn't get the medication to treat Cushing's, yet our cortisols were not at a level low enough to begin reversl of my condition.

While a friend and I were on the phone one day looking into a personal theory he had which he felt might explain our Cushing's, we stumbled on a paper about a trial of a medication being explored to treat Cushing's, the D9 agonist used to treat Parkinson's disease, Cabergoline.  It hit us one of our new medications, Ropinerole, is also used to treat Parkinson's, along with Restless Leg's Syndrome.  So we checked and fund out it is also a D9 agonist, along with acting on some other receptors as well, which would explain why it wasn't being evaluated as well.  So we talked with our endocrinologist on our next visit who felt we might be on to something and looked into Cabergoline and the possibility that tweaking our dose of Ropinerole might be a strategy for treating our Cushing's.  As a research physician as well as a professor of endocrinology the possibility struck a note with the doctor.  After six months of research and forming a plan, our dosage was slightly increase to see if the Ropinerole was indeed suppressing our cortisols and a treatment stratagem established.  By the way, the doctor who at the time was prescribing the Ronpinerole approved of our little experiment, tomorrow I'll tell him how it is turning out.

Now for the money part of the post. The doctor who started me on the Ropinerole will probably like what I have to report.  Technically I'm still at the small dosage range, small enough that increasing the dosage as we did probably wouldn't have hurt a thing.  Yet, my endocrinologist is pleased with results.  Our cortisols are now at a level he feels comfortable with for treating the disease.  Something to remember is that we are cyclical  and our cortisols do drop far enough on their own to cause problems, and may already have done so once since treatment began.  So the doctor wants to go slow enough to avoid that problem as much as possible.  While we don't blame him, we do have a problem with patience and are willing to risk much to gain much.

Our heamogobin A1C is stabilized a 7.0 and we have a demonstratable, if slow weight loss going.  We've gone from 368 lbs, at the beginning of treatment to 358 lbs, so the weight slope is downward.  Although we are still hypertensive, and that worries the Doctor, our blood sugars are well into normal range in the mornings.  So everything points toward success at this point.

We've also improved our health in other ways.  We are now off of pain medications and getting around better.  My back Doctor would probably be pleased with that and I might want to schedule an appointment with her for a new evaluation for that.  

If we continue to improve and could get our experience into the medical literature it would add another bit of evidence for the efficacy for treating Cushing's with D9 agonists safely.  With more treatment options open for Cushies more personal stratagems for the treatment of this disease be available to personalize the treatment to what works best for the individual.  That can't but help those of us who've waited so long for this day where more treatment options open up for us.

So I just thought my friends might want to the update.  I have a few more topics cooking and will hopefully have something more for you in a bit.

Chiao!

Doing For Ourselves: Quality Food And Some Of the Benefits Of Gardens

Hello again my friends!

This is one of those occasional doing for ourselves posts you will probably see more of since this blog is more than just an informational blog on Cushing's, it's about my journey and taking a more holistic approach to living with it.  This topis, food, get's a little touchy for us.  So please, if you are a disabled Cushie please take some time to consider carefully what I'm about to say to you.  If you are a family member, please think about it as well from the standpoint of doing something for your loved one suffering from this disease from more than the standpoint of, "Hey, here's something You can do!"  It may well be that your loved one may just be too much to do this for themselves, but you may be able to do this for both them, and the rest of the family.

Earlier last year I was sitting in front of the computer and exchanging comments in a Forum for Cushies like me on Facebook when the conversation took a turn which made some of us uncomfortable, but made me think, "Why Not?"  The fact is that Cushies who've reached the state of advancement with their diseases to be disabled have a special problem on their hands, FOOD!  The truth is that if one gets SSI here in the United States the government limits what their spouses can make pretty strictly while being able to keep on receiving benefits.  In many cases, they can't get extras many people on other forms of welfare can get, such as food stamps to help stretch things where they can get quality food.

When that happens we generally end up eating cheap, minimally nutritious foods like the morbidly obese we see featured on TV.  We get stuck with things like boxed macaroni and Cheese, or pasta salad, food which doesn't fill us up to start with, and does nothing but pile the weight on as we try to find some feeling of satiety.  Such food is devoid of nutrients, so it adds to the problem by denying us the nutrients we need to maintain our health as we fight this disease.  So what can we do?

There is a counselor in the group and she asked us why not grow a vegetable garden?  Well, there were plenty of answers to that one.  The expense of gardening, the work involved, we are disabled after all and can't do a whole lot, not knowing how, and so on.  In a way I don't blame my fellow Cushies.  I'm 358 pounds as of my last weigh-in two days ago at my Endocrinologist's office.  My back is shot, I can't bend over much or stand for very long.  So chores like weeding are just out of the question.  And, yes, there is the expense, if I could really afford to garden in the first place I could just go ahead and buy the food I need, right?  Added to that, what the heck do I know about gardening and who am I kidding anyway?  Yep, I thought, there are some pretty big obstacles to following that advice.  But I decided instead to follow that advise anyway and do so with a view to overcoming those obstacles.

More often than not those with Chronic diseases don't have much space for a garden to begin with for various reasons and their disability won't permit them to have much of a garden anyway.   Added to that there is a public perception that vegetable garden are inherently unsightly anyway and home vegetable gardeners are running afoul of local codes because they don't know how build an attractive garden.  Look at the picture above of a relatively small patio garden which makes clever use of the way the vegetables are combined in a way that the garden at least isn't unsightly and is hard to tell from any other bed with non flowering ornamental plants.  Of course most of us with Cushing's can't grow a garden quite like that, even with help, which a disabled gardener would want to get from family members capable of doing some of the heavy lifting and other tings we can't.  So the obvious answer is:

Yes, my friends, that is a picture of a dwarf tomato in an ornamental planter, or container.  Container gardening is the obvious answer to the problem.  It requires little in the way of tilling soil, raises the plant higher up making it easier to reach and permits the gardener to move the plant around if necessary for the conditions.  As we can see here, containers also permit us to plan an attractive as well as productive garden, at least in areas readily visible to the public, as in the case with that tomato plant.  I will admit planters like that don't come cheap.  But in areas where the appearance of the containers is not a real issue it is possible to get them cheap, or even for nothing, if one knows where to go, such as with these:

The fellow pictured here with his container garden is using five-gallon containers such as the sort folks often see for sale in hardware stores for mixing things up in and other purposes.  They can be cheaper than ornamental containers, but they can also be found for free.  Restaurants, bakeries, and other establishments often order needed supplies in three or five gallon containers just like the ones above, and are willing to give them away to anyone willing to take them off their hands after they're empty, for free.  One just has to have courage to ask around and find those businesses.  A word of caution, stay clear of businesses like janitorial services and the like unless you are certain the chemical supplies they use are biodegradable and non-toxic. 

By the way, the same can be said for nitrogen fertilizer, coffee bars and the like brew enough coffee to fill containers like that daily.  Some are happy to give the grounds away to those wiling to take them.  So that's a potential free source for compost material, and long term nitrogen needs since it takes a couple of months for the grounds to be processed in the soil and the nitrogen made ready for the plants to use.  There are many other resources for gardeners who need to garden on the cheap can use.  There are community mulch and compost heaps which are maintained by municipalities as part of their sustainability programs.  One simply needs to use the internet or get out in their community and find out what is there.

Seeds aren't that expensive.  One tip is to buy and use heirloom an/or open pollinated varieties of vegetables such as Brandywine tomatoes, etc., and collect and save seeds from the produce.  Open pollinated (heirloom varieties are open pollinated varieties with a known history of fifty years or more) plants often are a bit less productive than hybrids, but they are generally tastier and reduce seed costs in the long run if one learns to collect the seed and store it from year to year.  It is just one more way to reduce the cost of gardening as time goes by, just like composting and slowly accumulating durable containers a little at a time.  Something else to keep in mind is that your garden won't be that big, just what you can handle, so the expense if one uses a semi-organic approach and uses strategies to avoid expensive fertilizers and chemical herbicides or pesticides will keep the costs down.

Start out small to start off with.  You will have to make your mistakes while you learn and you will also have to convince family to help you with the tasks you can't do yourself.  It is better for both if you start small, just a couple of kinds of crops and a few plants of each, I grew some onions, tomatoes and peppers last year.  I also started a small compost pile.  That was a freebie, though raking up grass clippings and pine straw was trying, even with my small lot.

I found information online.  YouTube is a great source for information.  Some of the gardeners who have YouTube channels hold annual seed giveaways for subscribers willing to send self addressed stamped envelopes.  I got my hands on five packet of seeds that way from one channel I subscribe to, and I have five more on the way, from another one who is giving away seeds given to her by an heirloom seed company which is dedicated to the preservation of heirloom varieties through encouraging beginners to garden with thing like free distribution to other like minded individuals and organizations.

I will provide links to a number of seed companies.  One of them is the company I mentioned, another sells all his seeds for $0.99 a packet and has a fixed shipping rate.  His desire is to make gardening with heirloom vegetables more affordable and he is a recent start-up with his own YouTube Channel I recommend subscribing to.  another is one I've dealt with which has a pretty good selection.  There are lots more companies out there, but the links I posted will be a place to start if you would like to take the counselor's advise and garden.

More than just food, gardening will slow the degeneration of one's health through keeping you active, and I discovered another benefit of gardening.  Just sitting on a stool among he plants was calming and made one really great way to reduce unhealthy stress and find some balance.

Seeds

Annie's Heirloom Seeds
Burpee's Heirloom Vegetable Page

Gary Ibsen's TomatoFest

MIgardener

Baker Creek Seed Company

YouTube Channels To Start With

Alberta Urban Garden Simple Organic and Sustainable 

CaliKim29 Garden & Home DYI 

Gary Pilarchik 

Praxxus55712

Remember, these are all starting points for videos on how to garden, and several of them have smaller gardens.  The one in Alberta pairs up with another gardener who has his own channel, and he is worth checking out as well.  If you do start, you will want to explore YouTube and find gardeners who fit your particular circumstances more.  The same with the seeds, there are many other fine seed companies out there and if you don't live in the United States of America you'll want to research reputable companies in your own home country.