Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts

Thursday, November 18, 2010

Cushing’s syndrome and chronic venous ulceration

From the International Wound Journal

Cushing’s syndrome is a condition caused by high levels of glucocorticoids, or most commonly as a result of prolonged exposure to exogenous steroids. Clinical features include diabetes, hypertension, obesity, skin atrophy, immune suppression and delayed wound healing. We report a patient with iatrogenic Cushing’s syndrome, in whom long-term topical steroid therapy was used to treat varicose eczema, which contributed to the development of type 2 diabetes, morbid obesity, sleep apnoea and chronic wound sepsis. In this case, repeated hospital admissions and systemic antibiotics were associated with considerable comorbidity. Aggressive local treatment, consisting of potassium permanganate soaks and irrigating gels, was highly effective in reducing the amount of exudate, pain and preventing from further deterioration of the patient’s legs.

.:: Original Article Here ::.

  1. Moushmi Biswas1,*,
  2. Owain Gibby2,
  3. Tzvetanka Ivanova-Stoilova3,
  4. Keith Harding4

 

From http://www.thewoundcareblog.com/2010/11/cushings-syndrome-and-chronic-venous-ulceration-%E2%80%93-a-clinical-challenge/

Friday, April 9, 2010

Blood Pressure That Won't Budge

DEAR DR. DONOHUE: I've had severe high blood pressure for many years. I have tried all the medicines you can think of. I am 62 and have had one ministroke. I'm not looking for another. I used to weigh 235 pounds. I lost 100 pounds. I watch my salt. I have tried everything. My family has a history of high blood pressure. Can you recommend anything? -- F.

ANSWER: Blood pressure that doesn't drop by making life changes (weight loss and diet) or by taking three or four blood pressure medicines is called resistant high blood pressure (hypertension). Your weight loss is admirable. It should have reduced your pressure.

Watching your salt intake is also important. That entails more than not using the salt shaker. It requires you to carefully look for the salt content (listed as sodium or sodium chloride) of all your foods. Commercial soups, frozen dinners, many canned goods and luncheon meats often have a high salt content. Your diet should be one of fruits, vegetables, whole grains (unrefined wheat, barley, rye and oats) and one where meat and fats are eaten sparingly.

Increase foods with lots of potassium in them: tomatoes, potatoes, prunes, lima beans, kidney beans, navy beans, bananas, oranges and orange juice, spinach, peaches, cantaloupe and broccoli. Potassium lowers blood pressure.

Exercise for 30 minutes every day. Get your doctor's approval first, and start out modestly. Brisk walking is fine.

For resistant high blood pressure, your doctor has to look for the less-common causes of it. Sleep apnea (loud snoring with pauses when there is no breathing), adrenal gland tumors, Cushing's syndrome, narrowed kidney arteries and rare tumors such as pheochromocytoma are cases in point.

Go over your medicines. Some medicines raise pressure. Nonsteroidal anti-inflammatory drugs are an example -- Aleve, Advil, Motrin, aspirin and other NSAIDs. Don't drink more than two alcohol drinks a day.

More than 30 blood pressure medicines are on the market. I bet you haven't tried all 30 or combinations of them. Some brands come with two medicines in one pill, easing the burden of pill-taking. A new medicine, one completely different from all other medicines, is now available. It is Tekturna. Something must be done for your pressure.

The booklet on high blood pressure gives the story of this very common malady. To receive a copy, write: Dr. Donohue -- No. 104W, Box 536475, Orlando, FL 32853-6475. Enclose a check or money order (no cash) for $4.75 U.S./$6 Canada with the recipient's printed name and address. Allow four weeks for delivery.

 

From http://www.thewestsidestory.net/article/Your_Health/News/TO_YOUR_GOOD_HEALTH_By_Paul_G_Donohue_MD/19835

Saturday, May 9, 2009

Third Anniversary of My Kidney Cancer Surgery

From my bio at http://www.cushings-help.com/maryos_story.htm


(originally posted 3 years ago) ...My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.


So, I'm off GH again for 2 weeks, then I'm supposed to be retested. The "good news" is that the argenine test is only 90 minutes now instead of 3 hours.


Update June 2, 2006


Wow, what a nightmare my argenine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn't decided to go home after the test.


Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.


When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok - Tom couldn't drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom's doctor followed us to the ER and became my new doctor.


They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn't the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.


My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.


My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I'm cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.


I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years - so the test was useless anyway, except to hasten this newest diagnosis...

So, here we are 3 years later...

I find it amazing in a way.  The time seems to feel like more than 3 years.  Yet, had I been told I had 3 years to live back then, I would have seemed like a short time.  Amazing, the tricks that time can play.

I wish I could say that I feel wonderful now but I can't.  My energy levels are still so low and my temporary part-time job isn't helping.

Because the one adrenal gland I have isn't working and the other is gone, I'm still taking cortisol, although much less than my endo wants me to take.  If I take more, I start gaining weight again.

I'm feeling almost Cushie - when I'm home I'm sleeping but sometimes I's awake during the night, too.

I'm also eating more than normal, I think.  Not meals, but snacks, junky stuff.

Trisha Torrey wrote in her blog  about Patient Empowerment  a post titled An Ethical Conundrum - Should I Share This Information?  One of her questions was "How many patients, when given the choice between quality of life vs quantity of life, would choose quality anyway?"

Part of my response was "I want as much information as possible about my diseases and I want to be able to decide what do with that information...

I would much rather have a better quality of life than a longer one."

And it's true for me, today.  What is the point of hanging around for 20 or so more years if they're just spent sleeping?

True, I'm not in pain or anything but shouldn't there be more?  Am I just here to help other Cushing's patients?  I think I have enough started that future folks can help themselves.

I often see studies and clinical trials for Cushies and various drug  options.  And the cut-off date is always younger than I am.  Does this mean that possible future treatments wouldn't work for me?  Am I now too old to deserve a better quality of life?  What's the deal with that?

I know there are no answers to all this.  Maybe in my lifetime someone will come up with some answers to all this and I'll be out doing stuff.  I sure hope so!

But now it's time for a nap...

Tuesday, April 21, 2009

Finally!

I'm finally, at this moment, caught up on the bios.  I'm sure that there is someone writing another one right now, though LOL

Where did all these Cushies and potential Cushies come from?  This is supposed to be a rare disease.

It's good that the word is getting out, though.  Thankfully, people don't have to suffer with this alone anymore.

Between the jobs that have to be done on this site - and there are lots of invisible ones that members never see! , temporarily watching a friend's message boards, my "real" job, trying to have a life... I am more exhausted than I can remember being for a long time.

Housework is a thing of the far-distant past.

A few weeks ago I went to a handbell festival.  I took a bit of adrafinil on the main day to try to stay awake for the whole day.  It didn't seem to keep me as on as it did before.  I can't be used to it already.  Maybe I'm just that much more tired than I was just a few months ago.

I guess I'm a bit introspective today, too.  It's the first anniversary of Natalie's death.  Last month was the anniversary of Sue's death.

It's just not right that this disease has been known for so many years, yet doctors still drag their feet diagnosing it and curing Cushing's.

Why is it that we have to suffer so much, so long, and still there are so many deaths from Cushing's or related to Cushing's symptoms?

I know far too many people, good people, who suffered for many years from this disease that doctors said they didn't have.  Then they died.  It's time this stopped!

Speaking of death - what a cheery blog post this is turning out to be.  NOT!

I had been following the blog posts of a young woman who had "my" cancer".  She recently died.  I never knew her but she sounded like such a wonderful person who truly lived while she had the chance.

I wish I could be more like that and have a real life while I'm still here.  My life seems to be reduced to doing for others. 

 

When is it my turn?

Friday, February 20, 2009

The Internet can be a wonderful place But...

...sometimes it can lead you down paths you don't want to/shouldn't go.

I started this post a few days ago and couldn't continue.

I follow the blog of a woman who is dying of "my" cancer.  She's doing it with grace and dignity.  Her friends and family are leaving wonderfully supportive comments.  She seems to be so loved - by everyone.

It makes me wonder about how it will be for me.  I don't have that many real life friends and very little family.

I remember being a college student when my Nana died.  The family - my step-granddad, my father, my mom and I - sat for hours at the calling hours and no one came.  Same with the funeral.  Just us, and a minister.

How sad is that?  To live your whole life and at the end there's no one?

~~~~~~~~~~~~~~~~~~~~~~

On another completely different note, one of the message boards I participate in recently asked the question of whether the members still felt pretty.

That raised a whole can of worms for me.  I have never, ever felt pretty.  Even when I was a kid and your parents are supposed to think you're cute, my family let me know that I was fat and ugly. 

When by a fluke of teenage nature I was going to a prom and showing off my dress my grandmother only said that I'd inherited the family moles.  Not even that the dress was nice.  Just another of my imperfections.

~~~~~~~~~~~~~~~~~~~~

So...I've been depressed for about a month now.  I'm feeling overwhelmed, overworked, under appreciated.  I'll never, ever, catch up with the web work that I need to do.

Every day there are would-be hackers posting on the message boards and other ones signing up for another of the Cushing's sites to do God-knows -what kind of damage as members there.

New bios, newsletters - no time or energy to do those.

Non-profit - I need to put together a resume and recreate all the past years financial records as well as guess what will be in the future.

All I want to do is sleep.

What have I gotten myself into?

Sunday, November 16, 2008

Sleep, tired, nap, Sleep...

Seems like an endless cycle of either sleeping or being sleepy, napping or dozing off.  I miss the olden days when we used to have "project weekends" and get so much done, things built, rooms organized, going places, doing things, living.

My life now seems like it's a prelude to death.  I mostly can't stay awake for anything.

Yesterday I just slept most of the time.

I got up this morning and went to church - my kiddies sang at the first service, then another group rang at the second.  I left right after the bells and was home by 11:15AM.  And I napped until I had to leave for rehearsal at 4:45.  Home by 6:15 and - napped until dinner.  Ate and slept during TV. 

What a bore I must be.  Can't go anywhere, or do anything because I'm too tired. 

I cancel piano students because I'm too tired to clean stuff off  the piano before they come, don't call friends because I don't have the energy to talk. 

We run out of stuff because I'm to tired to go to the grocery and I can't remember when I vacuumed last.  And dust is everywhere.

Not that I'd spend my time cleaning if I had it but I'd like to make the choice myself what to do and not just depend on my lack of energy.

Maybe sometime I'll take a pile of Cortef and be done with it.  I'll gain my Cushie weight back again but maybe it would be worth it.

Saturday, October 18, 2008

Follow-up to yesterday 2

Well, the energy from the Adrafinil is a one day thing.  I felt great on Thursday.   Friday and Saturday I slept more than usual.  Saturday, today, was one of those days where I sleep nearly all day.  Maybe if I took the drug more it would build up in my system, maybe not.  But it was still worth having that one day where I felt what I imagine normal to be. 

While I was being a slug today, my husband painted the entire house.

I'm not sure if I would have been this tired today or if I was somehow making up for the nap I didn't get on Thursday.  Whatever the case, I'm glad that I had the opportunity to try this and to experience the wonderful effects, if only for one day.

Information from a site that sells this:

Alertness Without Stimulation

Adrafinil is the prototype of a new class of smart drug - the eugeroics (ie, "good arousal") designed to promote vigilance and alertness. Developed by the French pharmaceutical company Lafon Laboratories, adrafinil (brand name, Olmifon) has been approved in many European countries for treating narcolepsy, a condition characterized by excessive daytime sleepiness and other unusual symptoms.

Non-narcoleptic users generally find that adrafinil gives them increased energy and reduces fatigue, while improving cognitive function, mental focus, concentration, and memory. It has been reported that quiet people who take adrafinil become more talkative, reserved people become more open, and passive people become more active.

Of course, many stimulant drugs, ranging from caffeine to methamphetamine, are known to produce similar alerting/energizing effects. Adrafinil has been described by some users as a "kinder, gentler" stimulant, because it provides these benefits but usually with much less of the anxiety, agitation, insomnia, associated with conventional stimulants.

Adrafinil's effects are more subtle than those of the stimulants you may be used to, building over a period of days to months. They appear to be based on its ability to selectively stimulate 1-adrenergic receptors in the brain.2 These receptors normally respond to norepinephrine (noradrenaline), a neurotransmitter linked to alertness, learning, and memory. This is in contrast to conventional stimulants, which stimulate a broader spectrum of brain receptors, including those involving dopamine. Its more focused activity profile may account for adrafinil's relative lack of adverse side effects.

There's more info about Adrafinil on Wikipedia

It's interesting that that snipped report that people become more talkative.  I reported that in the original post, too, even though I didn't realize that this was a possibility.

A good quote that I wish I could relate to better:

"Time is limited, so I better wake up every morning fresh and know that I have just one chance to live this particular day right, and to string my days together into a life of action and purpose."

Lance Armstrong (1971 – )
Cyclist, seven-time Tour de France champion and cancer survivor

Sunday, August 24, 2008

We're here in Barbados!

WooHoo!

Our cab yesterday was for 5:30 so it was a very early start. Everything went smoothly, though. Not a long layover in Charlotte, either, which was good. I got a small nap on the second plane and I was surprised when we started the descent nearly an hour before our published time of arrival.

Customs and Immigration were faster than normal, too, but the rental car was slower. We had a reservation for a couple of months. Until this year, someone with a placard with our name would meet us right outside. We'd give him the credit card, get our car and go.

Now, in an effort to "modernize" I guess, they have an indoor office like they do at other airports and you have to wait in line with others including those who have no reservation at all. Oh well - "no problem, man".

In the Crane lobby we got to give Theresa a big hug and talk a little to Paul. If I were him, I'd avoid check-in days like the plague.

After we got here and unpacked a little we went grocery shopping at Emerald City. That's so much closer than when we had to go to the JulieN. I got my beloved salt bread (it was commercial, though. It was too later for homemade. Drat!) and a bit of rum punch. I'm so glad to see that Tutti Fruitti milk is still here. I have always loved it but 2 years ago they didn't have it anymore. There were even articles in the newspaper about not having it. That and vanilla milk are 2 long time favorites here.

Tom realized he didn't bring a network cable so he can't go online with his laptop in the room. I didn't bring one because I don't need one. So, I imagine we'll be on a mission to buy one of those here. I imagine when we go to SuperCenter in Warrens later today they'll have one.

He went over to the lobby to check his mail and I fell asleep by the pool. I was exhausted. We had a very easy, fast dinner and I was heading to bed by about 9PM. I went out to say goodnight to Tom and he had fallen asleep while channel surfing LOL

I didn't wake up until around 8AM. Tom was already reading, of course, and had made coffee (YEA!). I debated going back to sleep but got up anyway. Tom's at his regular Sunday morning meeting in Six Roads. I'm sure the woman with the coconut bread will be there and Tom will come home with a loaf. Tradition!

After that, off to SuperCenter for stuff we forgot yesterday and that cable. They're the only store open on Sundays here. Then maybe, finally (finally? we're only been here less than 24 hours LOL) we'll go in the pool. Or I could go now...

Tuesday, July 8, 2008

Methought I heard a voice cry 'Sleep no more!

Sometimes I feel like I belong in Macbeth. I know my maiden name is Scottish, too, but still.

Here it is 3:30 am and I can't sleep...again.

I'm pretty sure I don't have Cushing's again, even though I know my pituitary doesn't work well, and my one remaining adrenal isn't so hot.

I don't even take that much hydrocortisone and that's in the morning.

So, why am I up all night and sleeping all day?