The home page is found on www.lupusfibro.com and each time you open it you will find a message from me, Carolyn. I will post something new there every 7 to 10 days. Those posts are just for you, a way for me to communicate with you and let you know that we are available almost every day working to make this website something you can turn to, especially on those down days. We all have down days, sometime they are painful, sometimes depressing, sometimes it has to do with coping not only with your illness(es) but with your every day life.  You can turn to your website and surf through all the article titles….some you’ve read before and some you’ve skipped over, or even some new ones. Julia RN, Pat the webmaster geek, and myself are always dropping by to post something new. Some are very short articles, some are long and need your full concentration but all are there to put your mind at rest and on something that you can get your head around.

If the articles don’t satisfy your questions, or you don’t agree with what they say please leave a comment at the end of it…..or please ask questions. You can always email me personally and I will help you in anyway I’m able. But know, even though I can get pretty tough, I don’t remove husbands or children from your life. 

This is YOUR website…….USE it! 

Harry & Charlie

Yes, it’s an entire new year!  New year for new starts.  I don’t know about you but I can always use a new start, but I don’t always get one.  When it comes to health issues we often have to live with what we get.  However, we have more ways we can live with it than we think.  Acceptance is the first thing we can do that will help us immensely.  We do have choices when it comes to any illness.  If you have a chronic illness you can choose to learn about it; get educated on what the symptoms can be; on how it is diagnosed; what medications may help.  You can also look for a doctor that you communicate well with and you can check your local hospitals or newspapers to see if there is a support group for your illness.

You can always decide what your attitude will be in coping with your illness.  It’s your choice to be upbeat, to look at things with a sense of humor, and realize that it’s often up to you to control the possibility of depression.  Of course it’s stressful to find out you have a chronic, life-changing, illness. It can be painful; medications can cause serious side effects; & it often is quite expensive in the long run.  Stress can make it all so very hard to accept and stress and pain and changes can bring on depression.  You job is to educate yourself on the illness instead of stressing out.  Believe it or not you CAN control your stress levels.  There are many ways to cope with everything that goes with your specific illness.  Coping skills will help you to handle any moments or days of depression.

On my worse days I would want to be left alone, don’t bother me, let me stay in bed, ….you go, do, and be….but leave me to myself!  My husband would say, “OK honey, I’ll see that you have something to eat & drink, and you can have 24 hours to stay in bed and just read or whatever you want.  But in the morning you are up & dressed as life goes on and it’s way better with you, than without you!”  It worked for me as I controlled my life that day, and honestly I hardly ever spent the full 24 hours alone.  Find a way that helps you, & protects you on those painful days. You have the choice to find what works for you and still lets you join in again as soon as possible.  So if you haven’t learned about your illness & are not coping well with it…..you now have a new start with 2012.  Use it well.

Sunset Galveston Island, TX Gulf of Mexico

AND IN THE MEANTIME WE HERE AT MY LUPUS/FIBRO SUPPORT GROUP WANT TO WISH YOU A VERY HAPPY and HEALTHY NEW YEAR.  MAY 2012 BE A GOOD ONE FOR YOU AND YOURS.

Jerry & Carolyn Glein Directors

Julia RN

Patrick the Webmaster

We are sending you Christmas Greetings and do hope that your holidays will be enjoyable and very stress free.  This week is a busy week for everyone regardless what your plans may be.  Please start pacing yourself right now so you can truly enjoy the coming days.  Take time for yourself each day….feet up, deep breathing exercises, making lists of what needs to be done — and then mark off all those things that just aren’t necessary, cup of tea – make mine Lemon Lift please.

It is time to take inventory of your life this past year.  What was good, what was bad, what can be done better, what can be erased completely.  Any friends who really aren’t?  Someone who drags you down and uses you, really isn’t a friend and your life will usually be much better without them actively in your daily life.  Set your goals now including your health goals.  Do you need to follow thru on some physical therapy, or take some additional tests; maybe check out a new eye doctor or try a chiropractor.

And certainly not least, but be thankful for where you are in your life, in this country, where you live, your family and all the other blessings you’ve been given.  Yes sometimes we are hurting and our medical problems seem to be over powering, and we usually have looked around and found others worse or some even better than we are….sometimes we are our own worse enemies.  Be honest with ourselves and be gracious to those who have helped us in our times of need.

For me it is time to thank God for his goodness, and time to pray for those who have so little; for those who have lost their lives in the defense of our country; for people who have suffered due to floods, fires, tornados and other devasting happenings.  And if you’re able, reach out & be generous.

Gentle hugs,     Carolyn & Jerry   Directors

Julia RN and Patrick, Webmaster

Hey, they really are!  Christmas bazaars can be a very good thing for all of us.  The weather is colder and kind of dreary, the roads are crowded and somewhat slick in places and what about us?  We are achier than normal & yes, the weather can be blamed!  We’re kinda, sorta depressed, or maybe just a little blue.  We have way too much to do: shopping; tree to decorate; heck, the whole house – inside & outside to decorate; cookies to bake; Christmas cards to write notes on; gifts to wrap; planning for all the holiday parties & family gatherings.  I don’t know about you but just reading that makes me want to shut my eyes and take a nap.  In the middle of the night I find myself awake and my mind going in circles.

A friend emailed me recently and gave me a little pep talk & told me I could find peace that passes all understanding and let it be mine….it’s easy, just talk to God for a few minutes.  We may not all have the same way of finding our peace and centering ourselves….Christianity is mine, and if needed I’m sure you can find a similar feeling thru yours.  Don’t forget it’s there to use when we need some help.  All to often we forget to ask for the strength to make it another day.

Going to a Christmas bazaar will get you out of the house and into the celebration of the season your town is offering for your benefit.  Even if you aren’t in the market to buy some goodies or hand made items, you will be around people you may know or not, but can visit a bit with. GET OUT of yourself and into things going on around you….the colors, the decorations, the conversations, it’s all “eye & ear candy”.  You need a bit of that sweet stuff you pep you up and get you out of the holiday doldrums.  There are so many bazaars in my area as a variety of the churches have one and then the entire town has one.  That’s my favorite.  There’s caroling, contests with prizes, food sections, hand made beauties, and lots of people.  We know few of the people as we travel so much during the year, but all are friendly and we share greetings.  I often buy baked goods…I’m very picky when I do that, but I’m not much of a baker any more.  I love viewing the quilts and hand knitted or crocheted items, while Jerry checks out the samples of hot sauce or BBQ sauces.  It’s definitely a change of pace.  And that’s exactly what we need when we start slipping into a winter depression.

One of the first things I do in the mornings during the winter is to open all the blinds, and turn on lights if needed to brighten the rooms.. Dull, dreary rooms really drag a person down.  When I lived in Alaska, I was surprised to find the Eskimo’s wearing bright colors and busy patterned materials over their parkas to break up the continuous white of the landscape.  It was “eye candy” of the far north.

Hugs,  Carolyn

Thanksgiving is barely over and Christmas is just around the next corner, there is no time to rest!  We took the week of Thanksgiving off to relax and enjoy a lovely campground on the Gulf of Mexico called Dellenaro on Galveston Island in Texas.  By the time darlin’ hubby got the motorhome all hooked up, he was feeling like it had driven over the top of him!  And the next morning looking out our window catching a lovely view of the sun coming up over the gulf while we were waiting for an ambulance to arrive & take DH to the hospital.  Times like that are never expected, never planned for, but we have to grab hold and do the best we are able.  Six hours later Jerry had been diagnosed with a bacterial pneumonia in his lung along with being in his blood stream.  As soon as I knew he was settled in, I was heading home to let the darlin’ dog out for his over-due walk on the beach.  That’s the way the entire week went….several trips a day back & forth, hospital & home.

We made it home today but Jerry has several more days of recuperation and I’m still front & center on the dog walking mode.  Actually today has me hurting in several joints and muscles and it’s time for me to do a little of pacing & prioritizing.  Taking time, working it all out with my scheduling daily, and prioritizing so I’m doing the most important things first.  I found out that Jerry has a compromised immune system, just like I’ve had with my lupus, both chronic illnesses; so from now on we have to be more careful than we were in the past.  Pneumonia can be the toughest on the very young and the elderly….we are classified the elderly.  Bacteria can be picked up everywhere from the magazine your’re reading to the door you push open in a bathroom;  that bacteria can multiply and cause so many different illnesses.  And if you have a compromised immune system, remember to wash those hands more often, and use some of the anti-bacteria cleanser we so often see now in the stores.  Be aware of the seasonal problems in the area you reside and protect yourself.

Don’t stress out over the holidays, keep your cool, and just enjoy!

Hi, we’re so glad you took a minute out of your day to check out what’s new on our website.  To start with right here you will get a weekly message from me, that’s got to be worth something don’t you think? No? Well then if it’s a No, then you should just move ahead 2 places, and click on the forum.  On the forum you are bound to find something that will be of interest to you….something on medications, insurance, arthritis, lupus or fibro of course, history of this group?  Hey you can find out where WE are…Jerry & Carolyn  (way down at the bottom in the forum area).  You see Jerry & I travel a lot….for several years we completely lived in our motorhome and made it to every state in the U.S. (except Hawaii of course).  We visited a few support group meetings, and many of our support group members.  It’s been so much fun, especially for someone who has hit a “remission stage” of lupus.

Did you pick up on that last comment?  Yes, it’s true!  Lupus can go into remission, and yes it can flare up again, but it might not.  So if you are one of our members who have Lupus, you should know there is HOPE for you and others.  These chronic autoimmune system type illnesses have no know cause, and no know cure…..but…..they do sometimes go into remission.  The remission might happen due to the medication you are taking, the food you are eating, the supplements you’ve added to your treatment, but no one can truly say that’s the reason for any remission………..as they are able to go into a remission all on their own, no reason at all, it just happens.  It might only last for a week or a month, however mine has officially lasted now for five years ( and probably more like 6+ years).  Don’t give up hope.  Actually I hope that mine will last for the rest of my life…….if it doesn’t, I at least know how to cope with it since I did it before.  We are all “HOPE-ERS”.  I met a young Air Force man years ago up in Alaska, in fact he came to my home for dinner.  I asked him what he did on the small base, up above the arctic circle and he told me, ” I am a hope-er.”  What in the world is a hope-er?  ”I sit in front of my radar screen and hope those blips I’m seeing aren’t the Russians attacking us, Cause I don’t know what to do if it is!”    We never got attacked so I believe in being a “hope-er”, it seems to work.

Let's be a Hope-er for Lupus

That’s right!! This group is YOURS.  When you say, or read, MY Lupus/Fibro….you are acknowledging that it is your support group.  A group where you can find support, information, and additional education on your chronic illness.  You can socialize with other members at times, and you can always be in contact with me or our resident nurse.  We can visit, we can listen, we can give you answers (most of the time) and we can sometimes develop a true friendship.  If we don’t have an answer for you quickly, at least we know where to go to find it.  And you should also be aware that the word “SUPPORT” has two sides to it….we offer you support and….we, too, need support.

Autoimmune illnesses are not easy to understand.  There are so many variables involved with one…one autoimmune illness?  Hey, you can actually have more than one to deal with.  We have members who not only are dealing with lupus but are also trying to cope with Multiple Sclerosis…wow!  With lupus you may have more than one organ involvement at the same time.  Then there is the medications.  I can take corticosteroids but you can’t;  I can handle Plaquenil but you have side effects with it, I can use Ambien safely to help with my sleep but you have a bad time the next day when you try it.  Yes, so many variables…with the illness or the many illnesses;  with the medications, or the lack of medications that will agree with you;  my spouse is a big help when I’m in a flare and your husband doesn’t know how to cope with your illness at all.  All the numerous variables is the reason we need some extra support.  Let’s all help each other!!

Hugs,  Carolyn

Miss Kitty & Molly Supporting Each Other

Just a little Announcement:

Lupus Support Network is having their October symposium on October 31, 2011 , from 12-3, at Loma Linda University Medical Center , 1234 Anderson St Loma Linda CA in the Main Amphitheater on the Main floor.

The topics will be :

12-1 Dr .Kavoos Nazeri. MD S.L.E. Standard Lupus Prestantation.

1-2 Dr.Terrence Tan .D.O. New Treatments for Lupus.

2-3 Dr. Emmanuel Katsaros. D.O. Lupus with Chronic Pain and Fatigue Light food and drinks will be provided. To confirm or for information please call (909)874-9257

Weather often makes a big difference in how we feel; rainy, dreary day usually will bring all sorts of aches & pains; wintery, cold days if they are bright and crisp might hit us with a shot of energy or just make us cold & depressed; those spring days with mild temperatures and trees budding almost always give us energetic happy days; fall days with a bit of a nip in the air, leaves falling everywhere and we just want to get out and enjoy those last nice days before feeling locked in due to the cold winter ahead.  So how do those days affect you?  Painful.  Achey. Energetic. Fatigued. Depressed. Hopeful. Do you want to go and do, or Do you just want to cover up and hide?  When we wake up in the morning WE are the one to decide how we’re going to face the day, regardless of the weather.  We will know the minute our feet hit the floor whether it’s going to be a good day, a painful day, a depressed day, or hopefully an energetic day.  Just don’t waste that energy all at once…dole it out in small amounts at a time, so you don’t end up regretting it with the next day being one that you just don’t want to even get out of bed.  PACE yourself, PRIORITIZE your day!

We took a week off…I know that sounds funny when we travel and take off more that we usually stay home.  Home?  Our motorhome is as much our home as our little tiny house is.  We’ve been staying close to the tiny house the last few weeks due to doctor appointments, follow ups, labs, checking new meds work well…that kind of thing.  But this lovely fall week in east Texas is being spent on the Gulf of Mexico on Galveston Island.  We have a lovely campground right on the beach with temps in the 70′s and bright sunny days….a little windy for a couple of days, but very calm today.  I love the water.  It relaxes me, it calms my inner being.  When I’m walking the beach or sitting there, listening to the waves lapping the shore, watching my darlin’ Jerry walk our dog (Harry)….all is well with my world.  There may be terrorists around the corner or a hurricane headed this way or a major flare up of my lupus….but right at this moment ALL IS WELL WITH MY WORLD, and that’s all that matters to me.  Where we lived before this I had a special tree that I could sit under, see from my bedroom window, and during those times…all was well with my world too.

TRY to find your place where your world will be right!  Or maybe you will have more than one….when you discover that place, YOU will know it!  ENJOY!

Harry ready for a walk on the beach!