A NEW ARTICLE ON BENYLSTA

I just published a new article on the forum about Benlysta.  That’s one of the newer meds used for Lupus and there are few that are new when it comes to lupus.  I’m not totally sold on this one, have never used it and lucky me have not needed it at this time.  If you have tried it or are on it I would very much like to hear how it has worked for you.  Email me at   glein@lupusfibro.com   ….I have posted a few of the side effects here but there is way more inside on the forum  Benlysta is not recommended for those with kidney or cognitive problems.  Whenever you try a new med, start with a low dose to make sure you don’t have any adverse reaction.

Important Safety Information
BENLYSTA can cause serious side effects. Some of these side effects may cause death. he most common side effects of BENLYSTA include:

Nausea
Diarrhea
Fever
Stuffy or runny nose
Cough (bronchitis)
Trouble sleeping
Leg or arm pain
Depression
Headache (migraine)
Sore throat
Urinary tract infection
Decreased white blood cell count (leukopenia)
Vomiting
Stomach pain

Hope you have a great summer and our prayers go out to those who have been harmed by the tornadoes.

CarolynFrontPosterLLWLJB

Sun Sensitivity – Sun Danger

Hi to all of you, what a different Spring we’re having all over this country….or is this really normal and we tend to forget some of the past years?  ”I remember back…..” oh yes, we all have those stories about when we were 9 or 19 and what a horrendous weather we had to put up with then.  But if you look around one of  weather maps right now you will see snow around the northern end of the great lakes, winds & rain in the Pacific northwest (nothing much new about that one), some sunshine in the east and in parts of the south?  They’re enjoying 70′s & 80′s temps but know that Phoenix has already hit the triple digits of 102 degrees.  It’s like a patchwork quilt of weather and here we are leaving the month of April behind looking for those May flowers.  I’m in east Texas and we have had those flowers for at least a month now and we are enjoying a panorama of gorgeous wild flowers.while a good friend of mine is in Michigan and upset that she hasn’t been able to plant her garden….snow flurries is all she has.

Regardless  of where YOU are the SUN is one of those items that cause anyone with an autoimmune illness some serious problems.  You’re heard it before and often even I, will tend to ignore it.  My worries are:  I’ve been in remission from the severe form of lupus for almost 10 years now, but all it would take is an afternoon by the water, or out in the yard with a bright sun overhead and I could be right back there again.  That’s a form of sun sensitivity.  Maybe you burn easily; maybe you get headache and maybe you just love to have a great looking tan.  Sun has always been an enemy to most people; some are able to lay in the sun and get a glorious tan and nothing else to go with it.  No bright red, no blisters, no pain….but even then it is doing damage.  Believe me, you & I would probably be so red, hurting and the next day our joints would ache, we’d be lethargic and off to the doctor.

Don’t take chances with your health. Use that sunscreen. Wear that hat.  And wait till the sun is starting to go down a bit before working in that garden, or taking that stroll around the block.  When we lived in Oregon it was usually best not to spend much time out until after 3PM or later…..here in Texas it’s a bit later.  Much depends on your time zone…be aware of it.  Otherwise just prepare yourself when you must be out in the hot times of the day and if the next day or two you still feel wiped out, you can blame it on the sun, and blame it on yourself for not wearing that hat.  I know, I hate wearing hats myself…they can ruin a nice hair style….but give up the nice hair and save your life.19356609b8c1ad04054ff248d8bc5794

Dieting For Diabetics & Others

Dieting For Diabetics by: Marcela De Vivo
Wondering what to do now that you’ve been diagnosed with diabetes? Doctors usually drone on through a slew of lifestyle changes, including giving up your favorite foods (no!) and incorporating more exercise (the horror!). Instead of thinking of this as a massive overhaul, however, start adding in little changes to help manage diabetes. Studies have shown that people are more likely to stick to a new diet and exercise plan if it is incorporated gradually, through small and simple changes to what you eat everyday.
As someone who has a special needs member of the family, I understand how restricted diets can be a pain. A picky eater is doubly difficult to cook for when I have to consider all the dietary needs my son has in regards to his condition. But after cooking for him for several years, I’ve picked up a few tricks and have some of suggestions could really work well to help you manage your diabetes and weight loss with a minimum of lifestyle changes.
First off, the big “E” word. Exercise is key if you want to manage and lose weight safely with diabetes. You don’t need to start heavy weightlifting like the Terminator, or try insane high intensity interval workouts in order to reap the benefits of exercise. Simply walking when you “run” your errands actually accomplishes  much of your daily exercise requirement.  And the added bonus of all that walking? You can save a lot on gas by doing all your trips to the grocery store or drugstore on foot. And you won’t be able to buy nearly as much as you have to schlep it back on your back—a half gallon of ice cream becomes much less tempting when you consider how heavy it is after a mile and how melt-y it is once you get it back to the house a half-hour later.
Dietary changes can be a little more challenging. Giving up favorite carb- and sugar- laden comfort foods can seem nearly impossible, especially if you’re under stress. However, becoming someone who pays attention to macronutrients and how many versions of sugar (glucose, fructose, sucrose, HCFS, dextrose, corn syrup, refiner’s syrup, the list goes on and on) appear in your food is a good place to start.  You may have to give up those tempting goodies for something a little healthier, but you just might start fitting into jeans that haven’t seen the light of day in the last decade.  However, it isn’t all deprivation. While watching sugar, carb and sodium content of snacks and meals will become important, there are an array of satisfying substitutes for old favorites, or ways to improve on the original versions. Nuts come in wide variety of flavors now—you can get cocoa covered almonds if you’re jonesing for a chocolate fix. Nut clusters are also amazing—sugary, salty, crunchy, and absolutely fantastic.  While cucumber slices will never replace tortilla chips, dip them in enough guacamole and anyone (ok, most people) can overlook their lack of carb-y-ness. Mini-cheeses are adorable and great as a snack on the run.
I’ve also seen benefits in food pairing when it comes to a “cheat” moment. If you are going to eat something that will cause your blood sugar to soar (like some fruits and all desserts), make it a point to combine it with some fat and protein to slow down the absorption of the sugar. Apple slices with peanut butter is actually pretty delicious (and addicting—I do not recommend eating straight from the jar unless you have better self control than I do). Dried fruit brings the flavor to some unsweetened, plain Greek yogurt for breakfast.  Try to focus on what you can eat. Substitutions are much easier than they were in the past, what with the low-carb craze and the rise in popularity of paleo-friendly diets out there. Spaghetti squash with turkey meat sauce? Yes, please! Losing weight on a healthy, diabetic-friendly diet has never been more delicious.
Marcela De Vivo is a freelance writer in the Los Angeles area who has written on everything from marketing, technology, and real estate, as well as a variety ofhealth and wellness topics. She’s learned so much from her son and loves sharing that knowledge with others.

 

NOTHING SHADY ABOUT NIGHTSHADES

Are tomatoes and other “nightshade plants bad for arthritis?

For as long as I’ve been doing the support business things (23 years) that question has been asked many times and many people have quit eating any of the nightshade veggies.  I have lupus, fibro, arthritis and more….. and I love tomatoes and have never shied away from any of them.

Now according to Kaiser Permanente Medical Center in Honolulu  certain foods may cause symptoms to flare or worsen, such as those that can trigger inflammation which also includes red meats, saturated fats, processed and refined or artificial sugars…or other foods you may be allergic.  But NO scientific evidence or research has proven the nightshades will cause or exacerbate arthritis.

If you want to see if certain foods are affecting your arthritis, try an elimination diet. Cut out suspect foods for two weeks, then gradually reintroduce them, one at a time, noting any change in symptoms.

James McKoy Rheumatologist

I think Dr. McKoy has it correctly….those who find tomatoes, potatoes, peppers, etc. a  problem, may be allergic to them.  So watch what you’ve ate in the day or so before you flare, it may be an allergy to some food product.

Spring time in Texas

Spring time in Texas

I DON’T BLAME IT ON THE ALCOHOL….I BLAME IT ON ??

I DON’T “BLAME IT ON THE ALCOHOL” I “BLAME IT ON THE PREDNISONE”

You know exactly what I’m talking about!

My newly formed chipmunk cheeks and the Hunchback of Notre Dame’s hump I’ve got going on! Those lovely additions are the result of being on Prednisone…

Learn how she turned it all into, “I LOVE PREDNISONE!”

Click on the FORUM and read the rest of the story

INFORMATION ON THE WEBSITE

Due to a very large number of spammers we’ve had to make a few changes to the website that I want you all to know about.  We will no longer sign up members on the actual forum that can leave comments and ask questions.  Those members that we already have there will receive an email from me today telling them how they can get in touch with us if needed.  I have decided not to post my email addy here but you may be able to find it on the forum as I have in the past listed it there.  Until the spammying has quieted down I won’t post it here.  Also on this page there has been a place you could post comments, that has also been disabled for the present time.  Having to erase 100′s of spammers comments each day has taken it’s toll along with 50 or so emails that we receive daily that are also spammers asking to join the website.  Without closing the  entire website, this is the only way we know how to handle it.

Please still go to the forum and read the new articles that I post weekly.  It registers how many hits we get on the individual articles so we can see how many are using our forum.  If the numbers fall way off we will decide if we just need to disband it completely.   It’s expensive to pay for our website each year out of our own pocket.  We will make a decision at the end of the year and you will be notified before we close anything down.  It’s been a long run for Jerry & I, pushing 25 years now for us….but be assured I will still add new articles during the year as we like an up to date information site.

Thanks for being with us and we do hope you enjoy what you find here, we’ve always gone by “sharing information and educating those with lupus and/or fibromyalgia”.

Carolyn & Jerry & our webmaster, Patrick

 

FDA Tightening Opiod Use for Pain

 

This is what the FDA is proposing  and if you’ll click on the FORUM you will find the entire article and letter that many doctors have signed and are in favor of tightening the use of opiods.  I’m sure many of you who take them daily primarily for fibromyalgia use will find this difficult to understand and will be upset.  I, personally believe they are making the right decision, but understand those that don’t.

Last week, an FDA panel recommended changes for much stricter hydrocodone product* prescribing by changing them from Schedule III to Schedule II classification of drugs. No Physician’s Assistants nor Nurse Practitioners would be licensed to prescribe these medications, making it difficult for people in chronic pain (especially in rural areas) to receive and fill pain prescriptions. The change would stop doctors from writing prescriptions for more than one month’s'supply at a time or calling in new prescriptions without seeing their patients.

You’ll  find more on the forum…read it before making your opinion.

 

Resolution, NO…Intention, YES

Don’t make resolutions that you’ll probably break before the year ends.   Instead try something different, try to do the “Intention” way this year
  • Intend it
  • Believe it
  • Commit to it
  • Follow through with inspired action
  • Trust when you can’t yet see how it is coming together
  • Expect it to happen
  • Breathe often
  • Have fun
  • Appreciate the moments on the way to where you are going. (You don’t want to miss the magic while it’s happening.
ENJOY…..Carolyn

To rea

HEALTHY 2013

Of course we want you to have a Happy New Year but we definitely hope it’s a HEALTHY  one too.  Be sure to read the post below this one on how Magnesium can help you with sleep.  But what I wanted to do was to let you in on a new project I’ve been working on.  Jerry & I have been attending the Liberty Opry every Saturday night we are at the Tiny House here in Livingston, TX….we love the music, the band is great, and we’ve made some very nice friends.  A few months ago I was asked to do some writing for the Opry, and I’m now writing briefs about each show we attend and  I’m doing a quarterly newsletter for them.  If you’d be interested in reading some of my writings here  you can find them at:  www.libertyopry.com    when the page comes up you will see Jerry & my picture on the top left hand side of the page….Liberty Opry Notes….click on that and it will take you to the writings.  They’re all dated with titles, and you can click on individual ones…..just thought you might enjoy reading something I write that has absolutely nothing to do with lupus, fibro, arthritis, etc.  It is all about music and fun…….county western, gospel, rock n’ roll, western swing……ENJOY