dahlia in my garden: Rio Fuego in Coleus leaves

Tuesday, August 28, 2012

Tuesday-Newsday #79


It’s time for Tuesday-Newsday! The pain conditions spotlighted this week are Fibromyalgia/Chronic Fatigue Syndrome and Lyme Disease. The featured blog post is “Pain: An Invisible Condition” from the PainSupportUK newsletter by Jan Sadler. 

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below. 

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*PAIN Rx








*CHRONIC PAIN NEWS 



The Chronic Pain Eliminator (article & video)
This external stimulator stops the pain message from getting to the brain. It requires no surgery to install and it can work almost instaneously for the 80 to 90% of patients who benefit from it. See more info: *Doctor’s Interview  *Research Summary




*FIBROMYALGIA and CHRONIC FATIGUE SYNDROME (CFS)

Studies Seeking Patients with Fibro/CFS:




If you have fibromyalgia, ME/CFS  or chronic Lyme disease, please click to fill out this survey. The information will be used to determine the need for and financial viability of creating a center of excellence for NeureEndocrineImmune diseases.







This site offers uniquely male perspectives in forums, chat, news, personals, and more.


The current issue features articles such as Parenting with Chronic Illness, Fluoroquinolone antibiotics toxicity side effects, and Rheumatologists or Neurologists - who should treat fibro? 

CFS Patient Advocate blogger Chris Cairns explains the research being done on the probiotic GC-MAF 314 as a therapy for ME/CFS by Prof. Marco Ruggiero and Dr. Paul Cheney, as well as work that Dr. Derek Enlander is doing on a similar probiotic (MAF878). 

The Social Security Administration has issued a ruling on how they establish that a person has a medically determinable impairment (MDI) of fibromyalgia. This ruling went into effect on July 25, 2012. Click headline to see details.



*LYME DISEASE




This video shows patients diagnosed with advanced cases of Lyme disease. They share their symptoms, search for a diagnosis, and hopes for treatment. 



*FEATURED BLOG POST

by Jan Sadler of PainSupport

Saturday, August 25, 2012

My review of the TV show: " Push Girls "

...Follow the lives of five beautiful, intelligent and inspiring women as they challenge society’s perception of what life is like in a wheelchair...

I’ve been watching the unique reality show ‘Push Girls’ which airs on the Sundance Channel and I want to recommend it to everyone! I don’t know if any of the women on the show deal with chronic pain, but they certainly are dealing with some disability issues that affect me in my life - and besides that, I think the show  is interesting, positive, and inspiring. We never miss it at my home.

The show follows the lives of a group of women who are all wheelchair bound; three are paraplegics and one is a quad. This is not a reality show like Jersey Shore or The Real Housewives franchise, which always seem to show the most negative sides of people: drinking, fighting, selfishness, acting out, etc. 

The premise of the ‘Push Girls’ is that people with disabilities are the same as everyone else: they live, love, work, have relationships, and get immersed in the things they are passionate about. These four women are not afraid to open up their lives and show it all. If you’ve never seen it, you can watch a video tease of ‘Push Girls. Here is just a taste of what issues come up in the show:

~Angela reveals her serious relationship issues including the end of her marriage and a return to dating. Despite being a quadriplegic, she desires to return to the world of modeling. Surprise! Yesterday Nordstrom has announced they are hiring her to be in a national ad campaign. You can read more about that here.

~Auti is a dancer, singer, actress who is working on an album with her husband, who runs a hip-hip wheelchair dance team, and is also on a quest to try and have a baby. 

~Mia was paralyzed as a teenager when at the height of her competitive swimming. On the show she faces her return to the water after 15 years of avoidance, her relationship with her mother, dating, and the struggle of moving. 

~Tiphany is a free-spirit who loves fitness (she even “rolls” a 5K on the show), and deals with dating relationships as a bisexual.

~Chelsie, the youngest, is still adjusting to life in the wheelchair, especially with regards to dating. She’s also involved in wheelchair dancing.

So much more comes up on 'Push Girls' than the few tidbits I mentioned above. Additionally, these women are not just individuals thrown together as a forced group for a TV series; they are truly good friends who have been close for years. It’s such a candid look inside each of their personal lives and their mutual friendship, and it makes for very compelling television. 

Although the season finale airs on Monday night, you’ll still have two chances to watch the entire series this coming week. The Sundance Channel is airing a ‘Push Girls’ marathon tomorrow Sunday, Aug. 26; just check your local listings and then catch the final episode Monday night. Sundance will rerun the full season marathon again on Labor Day Weekend, Sunday, Sept. 2. 

I hope you enjoy the show as much as I do, and since it’s been renewed for a second season, we’ll have many more chances to see these amazing women as they push past the many boundaries in their lives.

'PUSH GIRLS' Links

Tuesday, August 21, 2012

Tuesday-Newsday #78


It’s time for Tuesday-Newsday! The featured blog post this week is “Back to School: Special benefits for children of the chronically ill” by Lisa Copen of RestMinistries.com. Lisa says, “If you are a mom or dad with a chronic illness and you want to jump up and down with joy that your child is heading back to school ...  you don’t need to feel guilty about it." It’s a piece that’s particularly timely now that September is just around the corner.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*PAIN Rx


In a major breakthrough, an international team of scientists has proven that addiction to morphine and heroin can be blocked, while at the same time increasing pain relief... 




*PATIENT NEWS

Although *all* Americans born between 1945 and 1965 should be screened for the virus, it is extremely important for those with Chronic Pain Conditions who may have received transfusions, injections, acupuncture, or other invasive medical procedures but were never specifically tested before...

So many scientific studies are making incorrect claims that a new service has sprung up to fact-check reported findings by repeating the experiments.



*ARTHRITIS: ARTICLES WHICH CONNECT DIFFERENT TYPES

Reveal which daily activities impact your arthritis by using this new free app for iPhone, iPad, and Android






*RHEUMATOID ARTHRITIS






A fun new CreakyJoints program empowers you to better manage your RA. Earn Points. Redeem Rewards. Have fun!



*PSORIATIC ARTHRITIS





*FEATURED BLOG POST

by Lisa Copen of RestMinistries.com

Saturday, August 18, 2012

More Pix from Mendocino

Here are a few extra photos from our trip to the Mendocino Coast last week. 


At the ocean's edge, my husband climbed a rock.

My husband sitting in the Mendocino Botanical Gardens.

I'm such a sucker for a homeless plant!
Sign says: "Sale Plants. Rescue me! Take me home. Plant me."

Dahlias at the Botanical Gardens (no variety name provided).

Tuesday, August 14, 2012

Tuesday-Newsday #77


It’s time for Tuesday-Newsday! The featured blog post this week is “What do you do when you feel like it's the worst day ever and you want to give up?” by Jenni Prokopy of ChronicBabe.com

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*CHRONIC PAIN NEWS









*PAIN Rx

A recent Petition to the FDA requests labeling changes for all opioid analgesics when it comes to their prescription for noncancer pain which would limit the doses, impose time limits, and restrict use for only severe pain. But, is there sufficient evidence of reasonable quality for the FDA to act on the Petition at this time? 

Since the state of Florida initiated a war on drugs, pain patients are also being prevented from receiving their medications







*PATIENT NEWS






*PEDIATRIC PAIN








*FEATURED BLOG POST

by Jenni Prokopy of ChronicBabe.com

Saturday, August 11, 2012

Travel and Pain: Plan Ahead Carefully and You Won't Be Up The Creek Without a Paddle


NOTE:  I wrote today’s piece as a submission for the 'Patients For A Moment' (PFAM) Blog Carnival which is titled: "How Do You Roll?’ What do you have to do to travel or just get out of the house?"  You can read all the blog carnival submissions written on this theme by going HERE.


My husband and I celebrated our 20th wedding anniversary this summer. To celebrate, we traveled last weekend to the Mendocino Coast (sorry I didn’t post last Saturday - I just ran out of time!). Like many people with chronic pain, I can’t just pick up and travel somewhere on a whim. I have to plan very carefully so I can truly enjoy the trip and not be suffering from so much pain that I cannot focus on anything outside of myself. It was important to consider all aspects of my comfort and physical limitations so the trip could be a success.

Here are my travel tips so that your next trip can be enjoyable, too.

~* SHANNON’S CHRONIC PAIN TRAVEL TIPS *~

1.) Remember the Basics:
It should go without saying... don’t forget to pack medications and treatment items. If you are flying, they need to be in the original bottles and in your carry-on bag - never put your meds in a checked suitcase because it could get lost or damaged. If you are traveling by car, as we were, consider whether heat may affect your medications. It’s also vital to remind yourself to take your meds on time. It’s so easy when traveling to get distracted from our normal schedules and miss a dose. Set a watch or phone alarm, stick a note in your purse where you can’t miss it, find some back-up method to ensure your medications are taken as prescribed.

No matter what method of transport you are using, be sure to keep hydrated, try not to get overheated or chilled so dress in layers, have some snacks available which are easy to access, and make sure you get on your feet to stretch and move around to ease pain and help your circulation (When I travel I must do this at least once an hour, preferably more).


2.) Comfort is Key
Sleep is a big issue for me. At home I use a lot of different items to make sleeping more comfortable, as I wrote about in a blog post listing the different things I use to manage my pain entitled, 'Strive for the Right Mix of Elements'. I have a Sleep Number bed which also can raise and lower like a hospital bed to give me maximum control over elevation of my head and feet. In the past when I traveled, we’ve called ahead and ordered a recliner from a nearby rental store so I can avoid sleeping on a flat mattress and it worked out great. Now it is possible for me to use an inflatable or a foam wedge along with a myriad of foam pads and pillows to ease my lower back, hip, and heel pain. If we are flying, we must box up all the foam pieces and find out how much the airline will charge for the oversize box. We’ve also resorted to shipping it ahead by FedEx once or twice - whatever works to get them there on time.

If you have any other issues with comfort, like a special cushion you keep with you at all times (me too!), special sunglasses to protect your sensitive eyes, a heating pad (me again!), reusable ice packs to ease inflammation - whatever it is that keeps you comfy and functioning, be sure to bring it. I have a standard packing list so I don't forget anything I need. I always review before I begin packing, so I can add any new items before I start. Then I tape the list to my door and check each item off as it goes into my luggage. If I didn't do this, I know I'd leave something vital behind. 


3.) Be Certain of Your Accommodations
Whether you are staying in a hotel or Bed & Breakfast, it’s important to make sure of your accommodations. With hotels, you can ask for a handicapped accessible room. But be warned: there is no set standard for this. You should ask them exactly what the room provides. In Seattle, we had a handicapped room which was great since I had my wheelchair. The doorways were wider, the bathroom had no tub - just a shower curtain, a shower chair, and a drain in the floor - the sink allowed wheelchair access and they provided lower shelves and towel racks. If you are going to a Bed & Breakfast, be warned that even if they say it is “ground floor” there may be steps or slopes that could be difficult for a wheelchair or if you have walking issues. Ask them how accessible the inn is so you don’t end up paying for a room where you cannot get up the three steps into the bathroom or climb the hill to get to your parked car. Don’t be embarrassed to ask specifics. As it turned out this time, the cottage we stayed at had two steep steps down to the main floor, which made it hard to get the wheelchair inside, but luckily I am ambulatory enough right now so at least *I* could get it in! 


Here I am at the Mendocino Botanical Gardens.

4.) Remember Dietary Restrictions & Do Some Research
Besides packing your own provisions, you need to be aware of what is available to eat where you are going. Since my husband is now pre-diabetic and is being very careful about his diet, I went online and looked at restaurant menus. If you have dietary restrictions or your medications require you to avoid or include certain foods, this is very useful. It was extremely easy to search for local restaurants on the web and I made a list of several options for each city we would be in so there were acceptable options in case one was too busy or closed. If you are staying at a Bed & Breakfast just alert them when you make your reservation of what allergies or restrictions you have.


5.) The Ideal Itinerary
After you’ve selected your destination, it’s a great idea to search through the attractions and sites to make sure you can enjoy what intrigues you. I wanted to visited the famous Mendocino Botanical Gardens. I called ahead to find out if the terrain was too steep or rough to use my wheelchair. I was told they offered electric carts to rent which are capable of traversing all the paved trails. Just a quick visit to their website and a phone call confirmed everything I needed to know so our visit to the gardens would not leave me painfully struggling to see all the different plant collections. In the end, I chose to use my own wheelchair for the back support, but checking ahead allowed me to consider all the options. 

As people with chronic pain, we have to give up some spontaneity when we are out of our familiar environment. However, taking a little extra time to do research gives us a much higher chance of fully experiencing and savoring the destination - and if we are feeling good and enjoying ourselves, so also can our companion! 

My husband and I had a wonderful trip. We fully enjoyed the cozy little cottage (especially the hot tub!), the Botanical Gardens, the Sea Glass Museum, the beautiful views, the wonderful food, and all uninterrupted time we shared. Although I did have a bad pain spike from the long car ride to Mendocino, all our pre-planning aided me in managing my pain and helped me avoid magnifying it while at our destination.

I hope my tips will come in handy on your next trip!

Tuesday, August 7, 2012

Tuesday-Newsday #76

It’s time for Tuesday-Newsday! The featured blog post this week is “Do You Ever Wonder, In Your Life With Chronic Pain?” by Sue Falkner-Wood.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*CHRONIC PAIN NEWS








*PAIN Rx








*PATIENT NEWS

“...by 2020 the U.S. faces an estimated shortage of 40,000 primary-care doctors with no way to remedy that in just a few years...”






*FEMALE PAIN CONDITIONS









*FOOT PAIN







*FEATURED BLOG POST

by Sue Falkner-Wood