Wednesday, June 28, 2017
Kalyn Allen, a fellow Cushie whose disease was finally diagnosed not that long ago (last year), lost her battle with Cushing's disease. We've been blessed with all the resources now available to get to know and help fellow Cushing's, who are often quite alone in our journey as we are with families who often aren't that supportive. Kalyn had a family who loved her and supported her through her treatment. But sometimes even that is not enough. It sounds like embolisms were the cause of death a reminder of how deadly they are. I had a close call in 2002 with a pulmonary embolism which struck and nearly took me out 15 years ago.
The Announcement of Kalyn's death with a link to her story and a donation page for medical bills can be found Rest In Peace Kalyn. The page contains a before and after photo of Kalyn.
RIP Dear Lady, Kalyn
Thursday, May 25, 2017
One of my Facebook friends and a fellow Cushies posted the following to her blog and then posted the link to one of the Cushing's forums today. Instead of simply posting my own write-up of the material I felt it best she gets the credit she deserves for both bringing this to our attention and the well-written post she put together. So here is the link to her post:
What We Know About Cushing's just changed!
One of my Sister-in-laws has Cushing's and had the surgery. Her tumor was in the Pituitary gland and there is no evidence the last I heard of a return of the tumor though there has been a return of the Cushing's Disease. Could this be the answer?
Catch you later, my friends and readers!
Friday, May 12, 2017
Hello there again from Cushie land!
Okay, do you hear a ringing in your head all the time? Is it something that just won't go away and just keeps on nagging you day and night no matter what you do? If you do have it you may well be a victim of Tinnitus.
Tinnitus is a constant ringing in the ears which just goes on and on and on, sometimes to the point of driving people crazy. People are often driven to all kinds of doctors and take medications for it that only work in the short term if at all. They try alternative medications, treatments, such as acupuncture, all to no avail. That's because when it's that bad there is really nothing we can do shy of firing a bullet through our gray matter.
That's because unless one has worked in an environment which was extremely loud without adequate hearing protection the problem isn't in the ear at all. And to add insult to injury the medical community has known this since the 1950s, but hasn't adequately trained the doctors in the trenches who have to deal with the patients who have it. The problem is deep in the brain where communication throughout the brain takes place and is a sign of damage to that system of some sort. And the kicker is the cause of the damage.
Cortisol and other anabolic steroids are chief culprits. I found this out when I listened to one of those ads out there promising a cure for tinnitus. You know, those nice little ads from somebody who went on this big journey looking for a cure to his own problem and discovered a miraculous cure he is willing to peddle to you and me...for a hefty price. In this case, the man offered up proof of what he was saying, genuine studies which I checked out. And boy did they check out!
The problem goes back to the old statement of too much of a good thing. Those of us with Cushing's do know that the cortisols have several uses in the body. They help regulate our blood sugars. They repair damaged tissues. When women get pregnant they do several things to protect both the mother and the baby throughout the pregnancy. But the problems take place when there is either too little or constantly too much of them in our system, hence both Cushing's and Addison's Diseases.
Where they come in where today's topic is concerned is that when there is too much in the body they can get into the brain and damage the communication system within the brain itself. Those with Cushing's often become forgetful, especially of short-term items. They can also experience mental disorders of the sort which involve the communication within the brain if predisposed towards them genetically to start off with. But the early symptom if such damage which often gets missed is the ringing in the ears of tinnitus.
What the fellow was pushing was an herbal concoction designed to suppress cortisol production on the assumption that was the problem. And perhaps it might work if caught and treated early on. I guess a doctor might have better information on that if any studies have been done.
I went on to one of the Cushing's support groups I'm on and asked them if they had tinnitus. The answer was an overwhelming yes! So it would appear that it might be another symptom to add. I also asked those who'd had surgery successfully to cure their Cushing's if the tinnitus was resolved as well. Sadly it wasn't for most. So the best thing to do is to get treatment as early as one can if they notice the ringing and if one is on steroids or know they have Cushing's they need to mention that while they're at it so the doctor can factor that into one's treatment.
That's it for now!
Wednesday, January 18, 2017
It's me again my friends!
Above is the newest picture of me and it was taken back in November. Were it not for the garden that room would be my world with the computer my window on the rest of the world. You can see a refrigerator, a coffee maker, and my guitar in the background along with my bed. Since my back started giving out my legs have gone with it to a large extent and I no longer walk like I used to. but I do fight the trend by getting out and doing what I can in the garden. Of necessity, I use something folks might call the lazy way to garden, but that's because I am losing strength.
I'm still taking medicine but not losing weight at the moment since I'm on a plateau right now and even gained some over the holidays. I do have activities and some new goals to meet in the coming year. That's the thing to keep the spirits up as the battle rages on. The point is to grow in some way, to work towards and accomplish something and that requires goals. The wise person doesn't just make it a New Year's resolution thing, they do it all the time and when a goal is reached they replace it with a new one.
I plan to publish a book in and you'll be surprised where I'm going with that, though, I have had it suggested to me that I ought to do one on living with Cushing's Disease which would be kind of autobiographical. I skipped that because I couldn't quite figure how to not write such a depressing book as I can easily write if I'm not careful. I am not ruling that out because I consider my knowledge on the subject second to nobody's and may do it after I get my first book or two out of the way and in the market.
The subject matter is emergency preparedness and was inspired by riding out Hurricane Matthew, which was at category two strength when it hit where I live on the South Georgia, USA Coast. The maps all said we would be under water where we were, but thanks to God that didn't happen though it got kind of hairy, at least for everybody else as it wasn't my first major storm and I slept right through the worst of it that night. But we were prepared with some last minute help when my housemates finally realized it was going to hit us too late to get out and some preparations I'd made during the previous months as I could during the summer because I had a little niggling feeling they would be needed. And they were. But because of them, we rode out the days following in relative comfort to some who hadn't made such provisions. If those of you watching the news saw a shot of a fat man waving up at a news helicopter the day after in Brunswick, GA it was probably me. Since the power and net were both out I had no way to watch TV and have no idea if they filmed me or not.
This winter the garden hasn't reached the goal I set but that's alright because I am learning and expect some disappointment along the way. My Garlic is taking off, though and I do have some miniature brassica plants going, but I'm not harvesting. I had a tomato plant make it through to Christmas with some tomatoes on it but the last freeze got it. So there are some positive things there. So my two goals of a completely edible garden, flowers included and a year-round production are still ongoing.
I'll let you know how things go and I'll try to keep you informed on various topics and issues as well.
Sunday, July 24, 2016
A few months ago her mother, Nancy, informed us that testing had revealed Brandi suffered form a form of MENS instead of Cushing's. Because of what it does MENS often raises the cortisol levels just like Cushing's Disease/Syndrome with the same predictable results. However, MENS is a more serious disease.
That's because Neoplasias are tumors that form in two or more endocrine glands at the same time and can have multiple affects.. As we found out in exchanges with Nancy they can spread to the lymphatic system, which is an ugly scenario any way one look sat it. When the tumors grow in the glands they affect whatever hormones are produced for the worse. So when they take up residence in the Adrenal glands watch out for both Cushing's and intractable hypertension pretty much at the same time. MENS comes in two types with the second type in two variations
MENS Type I
This is from the Merck Online Manual:
People with multiple endocrine neoplasia type 1 develop tumors, or excessive growth and activity, of two or more of the following glands:
- The parathyroid glands (the small glands located next to the thyroid gland in the base of the neck)
- The pancreas
- The pituitary gland
- The thyroid gland (less often affected)
- The adrenal glands (less often affected)
Depending on which glands are tumors and where those with MENS I will have multiple problems. One could see a combination of any of the following:
Low blood sugar.
Intractable high blood pressure
Menstrual abnormalities and breast secretions while not nursing (in women).
Decreased sexual desire and erectile dysfunction (in men)
It appears that MENS I will have a familial history, though, with the relatively recent recognition of the disorder and difficulty recognizing the Syndrome that history may not be known.
MENS Type IIa
Once again from the Online Merck Manual:
People with multiple endocrine neoplasia type 2A develop tumors or excessive growth and activity in two or three of the following glands:
People with this disease often develop thyroid cancer. They'll often have intractable high blood pressure. They can also develop kidney stones. Once again there does seem to be some family association with this form of MENS.
MENS Type IIb
Lastly, from the same Online Merck Manual:
Multiple endocrine neoplasia type 2B can consist of
This is the scary kind because of its association with cancers. It is not considered familiar instead being a genetic mutation. Because of that it can show up as early as three months of age. There are also often other abnormalities associated with it. The link i provided to the Merck Manual has more detail on these and other things associated with the other types of MENS as well.
There are DNA test for this disease. A doctor may also order a nuclear scan of the body to detect the tumors. The test is done by injecting a special nuclear die which will concentrate in areas of high blood usage and then a scan is done with a detector which maps out the areas of concentration. Other testing, such as hormonal tests may lead a doctor to suspect and test for this condition.
The treatment is to go in surgically and get the tumors out. It may require the complete removal of the thyroid or one or both of the Adrenal glands. So treatment can be a rather expensive proposition.
I've missed the latest of my friend, Brandi, and i don't have the link I'd planned on including to help her and her family out on the medical expenses. When I get it I will come back and edit this article to include it and send it back out for folks to see. Brandi has a rough road and this has affected her health and some of her familial relationships. Her mother is in her corner for sure and so am I.
Monday, June 27, 2016
Hello, my friends and readers! I hit the big 60 a couple of months back and feeling great considering my disease and the problems it causes. I saw my endocrinologist and he decided it was time to increase the daily dosage of the medicine we're using and hoping I don't have any trouble with it. So far I'm feeling alright.
I'm about to take the time to look at more of the research and start reporting what I find. However, I would like for my readers to go ahead and suggest topics they would like to see me address for them. Remember, I'm not a doctor and cannot hand out advice which amounts to practicing medicine. So I cannot really answer those kind of questions. But things which the research shows or topics f a personal nature on how to overcome or work around this disease are fair game. So go ahead!
This young lady has been responsible for plenty of visits to my blog and I am very grateful to her for allowing me to use her photo. It turns out she has a different disease which kicks the cortisols up through the roof and is being treated for that now. Such diseases are often characterized as "pseudo" Cushing's because they fit the profile so well and only get caught in the workup. The last I talked with her mother they did have a fund set up to help them with the medical expenses. If the mother will contact me after i post this to Facebook I'll be sure to let you know how you can help.
I would like to announce an addition to my blog family, The Cushie Gardener at http://thecushiegardener.blogspot.com/ . This will be a site for people who want to garden, but especially those who are disabled or low income and want to know how to have a vegetable garden which won't break the bank or their health in the process. It will be joined by a Youtube channel which is already set up of the same name. I just have to start videoing and figure out how to edit my videos. Please feel free to go over there and follow me on that part of my journey in life.
Catch you later!
Monday, September 28, 2015
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.