A stay in hospital

A stay in hospital has its good points

As a single woman living alone, there are very few browny points when mr lupus comes to call so much so that I have to admit that my recent stay in hospital highlighted just what I have been missing (sad but true). Sitting alone on the settee, comforted by 24hr TV I realised that being in hospital, although it meant you were sick and liberty impaired also brought some perks:

• Three meals a day. Okay there was no cordon bleur chef but it was hot and hand delivered • Fresh linen every morning

• Drugs. You have 24hr access. Not that I’m a drug adddict (although mr lupus is working hard to make me that way) but it could be a perk

• Clean clothes everyday. Okay the hospital fashion label may not be the best for your street cred but you’re not going anywhere.

• Transport to and from appointments. A very nice man wheeled me to my lung scan and inspite of looking a little the worst for wear he found me attractive.

• A choice of being with people or being on your own in your own private space. Well curtains drawn around the bed is private isn’t it)

• Room service. At the touch of a button you have access to a team of people who are there to serve you.

When put like that maybe being in hospital is not that bad! Okay I’m not advocating more stays in hospital just highlighting some of the benefits just in case you or I find ourselves there. Here’s to a pain free and hospital restricted 2014

Well I’m not headed to the hospital due to a “lupus” stay, but I am headed there for a brand new knee.  Actually I could use both of my knees replaced but I’ll do one at a time.  As the nurse instructor of my “Knee School” stated….”For those of you who are getting both knees replaced at the same time, just remember when you go to stand for the first time….you don’t have a leg to stand on.”   LOL  OK so it’s a bad joke but so true when you get both replaced at the same time

WebMD on the GO Via your Smartphone or Tablet

Experience WebMD on the Go Via Your Smartphone or Tablet
WebMD’s Mobile Site

WebMD.com has been optimized for your smartphone! Now it’s easier than ever to access trusted health and wellness information anytime, anywhere.
WebMD’s mobile web site makes it easy for you to browse slide shows, read articles, and find the answers to your health and wellness questions — and that’s not all! Check out mobile-only tools like Local Health Forecasts that provide you with the severity of pollen, the harshness of UV rays, and more — all based on your location!
To access the mobile site, simply go to WebMD on your smartphone.

http://www.webmd.com/mobile?icd=ban_hse_wbmd_300x250_mobapp_g

Fibro-Patient-Focused Drug Development

Public Meeting on Fibromyalgia Patient-Focused Drug
Development

On December 10, 2013, the U.S. Food and Drug Administration (FDA) is conducting a public meeting on Patient-Focused Drug Development for fibromyalgia. The FDA is interested in obtaining patient input on the impact of fibromyalgia on daily life and patients’ views on currently available therapies to treat the condition.

Date: December 10, 2013
Time: 1:00 p.m. to 5:00 p.m.
Location: FDA White Oak Campus
10903 New Hampshire Ave.
Building 31, Room 1503A (Great Room)
Silver Spring, MD 20993

For information on parking/security at this meeting, please refer to: http://www.fda.gov/AboutFDA/WorkingatFDA/BuildingsandFacilities/
WhiteOakCampusInformation/ucm241740.htm

Registration

To register for this meeting, fibromyalgia patients should visit:

https://patientfocusedfibromyalgia.eventbrite.com/

Details on the Meeting

• Federal Register Notice (9/23/2013)
Fibromyalgia Public Meeting on Patient-Focused Drug Development https://www.federalregister.gov/articles/2013/09/23/2013-
23019/fibromyalgiapatient-focused-drug-development-meetings

• Webinar: Background on FDA and Patient-Focused Drug
Development

http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm349133.htm

IMPORTANT!

Even if you are unable to attend this meeting in person, you can make a very important contribution by responding to a group of questions which have been developed specifically for fibromyalgia patients by the FDA. (Those planning to attend the meeting are also encouraged to submit their answers to these questions.) The questions pertain to two main topics:

• Topic 1: Disease Symptoms and Daily Impacts That Matter
Most to Patients (4 questions)

• Topic 2: Patients’ Perspectives on Current Approaches to
Treating Fibromyalgia (4 questions)

You can access the questions by clicking on the link to the Federal Register Notice included above. Instructions on how and where to submit your responses are also provided there.

Please also share this FDA meeting notice with any other patients in the U.S. who might be interested.

The Food and Drug Administration is part of the U.S. Department of Health and Human Services

Thanksgiving 2013

 

T is for the trust the pilgrims had so many years ago
H is for the harvest the settlers learnt to grow
A is for America, the land in which we live
N is for nature and beauty which she gives
K is for kindness, gentle words, thoughtful deeds
S is for smiles, the sunshine everyone needs
G is for gratitude … our blessings big and small
 I  is for ideas, letting wisdom grow tall
V is for voices, singing, laughing, always caring
 I  is for Indians, who taught them about sharing
N is for neighbors, across the street, over the sea
G is for giving of myself to make a better me
by Judith.A. Lindberg
Best wishes to you and your family for a comfortable and
Happy Thanksgiving!

Making a big move….and coping with that sleepy feeling!

SO I have been negligent in posting on here an  d the excuse is we have made big move from Texas to Tennessee, I hope you accept that!  When you get our age it is almost a traumatic experience to make such a big move and thanks to our son and his family they made it almost enjoyable.  We are now surrounded by mountains of boxes to unpack but with time, patience, prioritizing and pacing we will get it all together in time.  So how about learning a bit about one being overly sleepy…..I’ve been there!

Coping With Excessive Sleepiness
Natural Sleep Aids

Jana Barber, a teacher in San Francisco, has had insomnia off and on for 20 years. She’s learned to function on just a few hours a night, but sometimes, she says, lack of sleep catches up with her. “I get really ragged sometimes,” she admits. “When you haven’t slept, it’s tough to keep your sense of humor — and your patience — and you need both when you work with kids.”
What are the options for people like Barber, who don’t want to take prescription sleep medications but crave a good night’s sleep? WebMD consulted some sleep experts about “natural” sleep aids to learn more about how — and how well — they really work.

http://www.webmd.com/sleep-disorders/excessive-sleepiness-10/sleep-supplements-herbs?ecd=wnl_slw_111713&ctr=wnl-slw-111713_ld-stry&mb=

ATTENTION your comments can count!

You are receiving this email because we thought that you may have an interest in the upcoming FDA Fibromyalgia Hearing on December 10, 2013, in Silver Spring, Maryland. The National Fibromyalgia & Chronic Pain Association received an invitation to participate in this meeting, and now we are inviting you to join with us to prepare.

On December 10, 2013, from 1-5 PM, the FDA will obtain patient and patient stakeholder* input on the symptoms of fibromyalgia that matter most to patients and on current approaches to treating these fibromyalgia symptoms.

The FDA is interested in obtaining a better understanding of the fibromyalgia patients’ perspectives on:

  1. The severity of the disease and the impact on your life (both function and quality);
  2. The symptoms of fibromyalgia that matter most to you (explaining those you experience); and
  3. Your perspective on the available therapies used to treat your fibromyalgia symptoms.

Patients who are interested in presenting comments as part of the panel discussions will be asked to indicate in their registration which topic(s) they wish to address. These patients will also be asked to send a brief summary of responses to the topic questions as part of their application to be a panelist to the FDA. Panelists will be notified of their selection soon after the close of registration on November 27, 2013. FDA will try to accommodate all patients who wish to speak, either through the panel discussion or through audience participation. Comments will be limited by time constraints.

To help patient advocates understand the FDA process and how to prepare to make public comments, the National Fibromyalgia & Chronic Pain Association (NFMCPA) is developing three public webinars and additional reference materials. To advocate at the December 10th meeting, an application must be sent to FDA through their online portals. The NFMCPA is available for more information and can offer suggestions on how to relay your comments and experiences through efficient and effective testimony before FDA.

This is a unique opportunity to create a change in how fibromyalgia is understood and viewed by the FDA. Through the use of the webinar presentations the NFMCPA will help to empower and enhance your understanding of the many aspects of this important event:

  1. “Understanding the Drug Development Overview” – Tuesday, November 5th;
  2. “Preparing Your Public Testimony” – Tuesday, November 12th; and
  3. “How is Safety and Effectiveness Evaluated?” – Tuesday, November 19th

These webinar presentations will be easy to access and help you, the fibromyalgia patient advocate for advancement in research and treatments addressing pain and additional symptoms. We look forward to preparing with you for this important meeting.

Best regards,

signature

Jan Chambers, President & Founder (NFMCPA)
National Fibromyalgia & Chronic Pain Association


FDA Topic 1 questions:
Disease Symptoms and Daily Impacts that Matter Most to Patients

  1. Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep issues, crawly skin etc.)
  2. Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)
    1. How do your symptoms and their negative affects impact your daily life on the best days?
    2. On the worst days?
  3. How have your condition and its symptoms changed over time?
    1. Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?
  4. What worries you most about your condition?

FDA Topic 2 questions:
Patients’ Perspectives on Current Approaches to Treating Fibromyalgia

  1. What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise or acupuncture.)
    1. What specific symptoms do your treatments address?
    2. How has your treatment regimen changed over time, and why?
  2. How well does your current treatment regimen treat the most significant symptoms of your disease?
    1. How well do these treatments improve your ability to do specific activities that are important to you in your daily life?
    2. How well have these treatments worked for you as your condition has changed over time?
  3. What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)
  4. What specific things would you look for in an ideal treatment for your condition?

 

Don’t Overdo IT

Don’t overdo it

Monday, September 16, 2013

  • (HealthDay News) — Lupus is an autoimmune disease that can cause fatigue and fever to skin rashes and joint pain. There is no cure, but a healthy lifestyle can help control symptoms.

Womenshealth.gov offers this advice about living with lupus:

  • Pace yourself, and avoid pushing yourself too hard. Take breaks when necessary, and get plenty of rest.
  • Find ways to reduce stress, such as by exercising, socializing and relaxing.
  • Seek companionship from friends, family and a support group.
  • Talk to your doctor if you struggle with lupus, or worry that you may be becoming depressed.
  • Learn as much as you can about lupus, and take more control of your disease.

New Clues to Fibromyalgia’s Causes

TUESDAY, Aug. 6 (HealthDay News) — About half of fibromyalgia patients have damage to nerve fibers in their skin and other evidence of a disease called small-fiber polyneuropathy (SFPN), a small new study finds.

Fibromyalgia is characterized by symptoms such as pain and tenderness, fatigue, and sleep and memory problems. The disorder has no known causes and few effective treatments.

The study of 27 fibromyalgia patients found that 13 had evidence of small-fiber polyneuropathy. Unlike fibromyalgia, small-fiber polyneuropathy is known to be caused by specific medical conditions, some of which can be treated and sometimes cured, according to the Massachusetts General Hospital researchers.

The findings were published online in the journal Pain.

“This provides some of the first objective evidence of a mechanism behind some cases of fibromyalgia, and identifying an underlying cause is the first step towards finding better treatments,” study corresponding author Dr. Anne Louise Oaklander, director of the hospital’s nerve injury unit and an associate professor of neurology at Harvard Medical School, said in a hospital news release.

“Until now, there has been no good idea about what causes fibromyalgia, but now we have evidence for some but not all patients. Fibromyalgia is too complex for a ‘one size fits all’ explanation,” Oaklander said.

“The next step of independent confirmation of our findings from other laboratories is already happening, and we also need to follow those patients who didn’t meet SFPN criteria to see if we can find other causes,” she said. “Helping any of these people receive definitive diagnoses and better treatment would be a great accomplishment.”

Fibromyalgia affects 1 percent to 5 percent of people in Western nations, and many more women than men.

SOURCE: Massachusetts General Hospital, news release, July 30, 2013

HealthDay

MEDICAL TERMS WE CAN ALL UNDERSTAND

Rednecks have the lowest stress rate because they do not understand the seriousness of most medical terminology
Medical Term
Redneck Definition
Artery
-
The study of paintings
Bacteria
-
Back door to cafeteria
Barium
-
What doctors do when patients die
Benign
-
What you be, after you be eight
Caesarean Section
-
A neighborhood in Rome
Cat scan
-
Searching for Kitty
Cauterize
-
Made eye contact with her
Colic
-
A sheep dog
Coma
-
A punctuation mark
Dilate
-
To live long
Enema
-
Not a friend
Fester
-
Quicker than someone else
Fibula
-
A small lie
Impotent
-
Distinguished, well known
Labor Pain
-
Getting hurt at work
Medical Staff
-
A Doctor’s cane
Morbid
-
A higher offer
Nitrates
-
Rates of Pay for Working at Night,
Normally more money than Days
Node
-
I knew it
Outpatient
-
A person who has fainted
Pelvis
-
Second cousin to Elvis
Post Operative
-
A letter carrier
Recovery Room
-
Place to do upholstery
Rectum
-
Nearly killed him
Secretion
-
Hiding something
Seizure
-
Roman Emperor
Tablet
-
A small table
Terminal Illness
-
Getting sick at the airport
Tumor
-
One plus one more
Urine
-
Opposite of you’re out

 

HOPE THIS BRINGS A SMILE TO YOU!

I recently received an email about a survey about the mental health of those with fibromyalgia from a Psychologist from Eastern Tennessee University.  I’ve checked it out and plan to take the survey myself  &  for those of you with any hint of fibromyalgia let alone another chronic illness that often leaves you with Fibro Fog or cognitive difficulties maybe you should do so too.  It’s a subject you don’t see seriously discussed very often.  My first rheumatologist would say, “yes, I know it happens”, or “yes many complain of the same problem”.  But I never thought it was taken seriously….maybe because he, nor anyone else knew how to handle it 25 years ago.

Here is the link: https://www.surveymonkey.com/s/help_us_learn_about_fibromyalgia

WATCH out for the HEAT!  I often mention staying out of the direct sunlight when the sun is high….but watching out and taking care of yourself during the HOT times is another thing.  Drink lots of water, or drinks similar to Gatorade & G2 (for no sugar) and use your AC if you have it, if not sit near a fan and avoid doing heavy work.  Do take care of yourself….no one else will do it as good as you do!!

Carolyn

Campground Champaign Illinois

Campground Champaign Illinois  We stay here when we visit my sisters