Saturday, September 24, 2011

How to sum up a year like this one? My Dad passed away in February. I was shocked by the physical way in which grief strikes a person. Mentally I thought I was managing okay, not great mind you, but okay considering the circumstances, but I was utterly stunned by the ramp up (or more accurately, full-on flare) of nearly all of my symptoms (migraines, IBS, fibro pain like i just couldn't believe, neurological symptoms and falling, the list goes on, and on, and on. Spring was terribly tough, no two ways around it. In May I spent a week in an epilepsy monitoring unit... the good news is I don't have epilepsy, the bad news is I have Paroxysmal seizures which I sort of gather means they aren't so sure what's causing them. Being in the hospital, I missed the one week in spring where my magnolia bloomed. Funny how it's the little things, huh. I had so been looking forward to taking pictures this year with my new camera. And this only takes us through May. Since then? The short version, my little brother got married so there was lots of prep leading up to that straight til mid July. I thought hey, now maybe I can breathe. Before the reception was over Mom broke her wrist while she was dancing (taking the term party til you drop a little too seriously). She was too cute and in all honesty she was high on life that night. At any rate we took her to the hospital after the reception ended and she came home with us at 7am the following morning. She's been living with us ever since. Oh yeah, and vertigo has once again reared its ugly head.

There's so much I need to sort through, both literally (combining two households) and metaphorically. There's a lot of "intricate" details I still need to categorize and sort - trying to connect the dots between co-existing conditions. I also need relearn how to live life within my limitations. The key word in there being LIVE. There are a lot of questions I'd like to ask fellow sufferers, but unfortunately I've been so swallowed up by just trying to get by that I haven't been able to revisit the online communities that might help provide some answers. For instance, if it wasn't for a Fibro support group online 5 years back I'm not sure when, if ever, I would have realized that I had Ehlers Danlos. I've learned not to underestimate the resource we each have the potential to be for one another. It's not just about emotional support, which is absolutely essential, but also that we are all such fascinating little walking knowledge bases with unique journeys through the wilds of chronic illness. One of the things that keeps me going is believing that what I've gone through, what I continue to go through, might hopefully ease the journey just a tiny bit for someone else. If someone can avoid even one pitfall of the panoply that inevitably accompany chronic illness, than it feels a little less like it was all for naught.

Friday, November 12, 2010

Life Happens

I can't believe it has been over a year since my last post, and what a year it has been. In '07 I stepped partially in to the role of caregiver for my grandmother, and soon after for my mother and father. Dad nearly died this summer after breaking his hip in spring and developing c. diff from the resulting nursing home stay.

I've found, quite frustratingly, I can't keep up, much less meet the needs of my family or myself. I keep hitting a wall. The wall it appears is now biting back. I can only assume that my extended exertion has contributed to my continued downward spiral. At the moment I'm battling vertigo - second round, first began late June and only lasted 10 days. Of all my maladies I think vertigo is the one I'd most readily trade in. Dislocations, I can handle. IBS, POTS, CFS, EDS, depression, miserable but I handle it. Vertigo handles you, there's no two ways about it.

Thursday, April 9, 2009

Whittemore Peterson Institue - Chronic Fatigue Syndrome Cure?

This was taken from luminescentfeeling's Channel on YouTube
which has an interesting and informative collection of ME/CFS

Wednesday, January 21, 2009

FDA Gives Milnacipran Green Light for Fibromyalgia Treatment – Third to Be Approved, After Lyrica and Cymbalta

I'm very excited about this approval. With this
medicine's ten year
history overseas I think it may
be a better first choice than Cymbalta.
Call it
a hunch, I also believe this may be better
suited for those of us
with autonomic
dysfunction as well.
More thoughts later.
-Ann Enigma

January 15, 2009

The drug milnacipran (to be marketed under the brand name Savella™) received FDA approval as a prescription treatment for symptoms of fibromyalgia (FM) on January 14, 2009 – and reportedly will be available in U.S. pharmacies by March.

Milnacipran – a selective serotonin and norepinephrine dual reuptake inhibitor (SSNRI) developed as an antidepressant – has been tested in multiple trials for ability to demonstrate concurrent improvement in FM pain, physical function, and overall impression of change (global assessment).

Trials Measured “Global” Symptom Status
Generally, more trial subjects taking milnacipran than subjects taking placebo reported “at least a 30% reduction in pain from baseline and also rated themselves as ‘very much improved’ or ‘much improved’ in the global assessment,” according to a release by the drug’s developer, Cypress Bioscience (San Diego), and Forest Labs (New York), which owns the rights to milnacipran in the U.S. and Canada.

Milnacipran “is the only product approved for the management of fibromyalgia that used this complete responder analysis as its primary endpoint,” observes Cypress Bioscience CEO Jay D. Kranzler, MD, PhD.

“The introduction of Savella is important because it is the first drug approved to treat the symptoms of fibromyalgia using a composite responder analysis,” notes fibromyalgia pain specialist and researcher Dr. Daniel Clauw, Professor of Anesthesiology and Medicine (Rheumatology) at the University of Michigan, Ann Arbor.

May Address “Abnormalities in Certain Brain Neurotransmitters”
“Although the exact mechanism by which Savella improves the symptoms of Fibromyalgia is unknown, some researchers believe that abnormalities in certain brain neurotransmitters may be central to fibromyalgia," the news release states. "Savella blocks the reuptake of both norepinephrine and serotonin, with greater selectivity for the inhibition of norepinephrine reuptake in vitro. This may be the mechanism by which Savella acts to improve the symptoms of fibromyalgia.”

As with all potent drugs, milnacipran is not without potential side effects and contra-indications, as detailed in the Cypress Bioscience/Forest Labs news release under “Important Safety Information.”

Copyright © 2009 ProHealth, Inc.

Monday, November 17, 2008

"Gulf War Syndrome" is real, report finds

It's astonishing to me how long it's taken for illnesses like these to be
legitimized. I suppose
I will just try to content myself with the
fact they have been and not concentrate on the
and ridicule that victims of Enigmatic Illness have faced.

Remember only half this battle has been won,
the other half is finding adequate care.

WASHINGTON (Reuters) – A report released Monday concluded that "Gulf War Syndrome" is a legitimate condition suffered by more than 175,000 U.S. war veterans who were exposed to chemical toxins in the 1991 Gulf War.

The congressionally mandated report could help veterans who have battled the government for treatment of a wide range of unexplained neurological illnesses, from brain cancer to multiple sclerosis.

The Research Advisory Committee on Gulf War Veterans' Illnesses concluded that Gulf War Syndrome is a physical condition distinct from the mental "shell shock" suffered by veterans in other wars. Some earlier studies had concluded it was not a distinct illness.

"Scientific evidence leaves no question that Gulf War illness is a real condition with real causes and serious consequences for affected veterans," said the committee, which has been looking into the problem since 2002.

The committee, composed of independent scientists and veterans, said Congress should boost funding for research on Gulf War veterans' health to at least $60 million per year.

"This is a national obligation, made especially urgent by the many years that Gulf War veterans have waited for answers and assistance," the committee said.

Congress set up the committee in 1998, but the U.S. Veterans Administration did not appoint anyone to serve on it until 2002.

Gulf War Syndrome affects at least one-fourth of the 700,000 U.S. troops who served in the 1991 effort to drive Iraq out of Kuwait, or between 175,000 and 210,000 veterans in all, the report found. Few have seen their symptoms improve over the past 17 years, the report said.

Symptoms include persistent headaches, widespread pain, cognitive difficulties, unexplained fatigue, skin rashes, chronic diarrhea and digestive and respiratory problems.

Many Gulf War veterans suffering these symptoms say they met with skepticism when seeking treatment.

The panel found two possible causes: a drug given to troops to protect against nerve gas, known as pyridostigmine bromide, and pesticides that were used heavily during the war.

The panel said other possible causes could not be ruled out, including extensive exposure to smoke from oil-well fires and low-level exposure to sarin gas when captured Iraqi stocks were destroyed.

The U.S. government has spent roughly $440 million on Gulf War health research since 1994, but spending has declined in recent years and often is not focused on improving veterans' health, the committee said.

The report further highlighted inadequacies in the medical care veterans have received from their government.

A 2007 investigation by the Washington Post found combat veterans in the current Iraq war faced rodent-infested housing and bureaucratic hurdles as they sought treatment at the Walter Reed Army Medical Center, the flagship military hospital in Washington D.C..

(Editing by David Storey)

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