Carolyn, Director

 

May is THE AWARENESS MONTH of many illnesses that probably affect your  life today…Lupus is the one that is most prevalent in my life, but I also struggle with some Fibromyalgia and the ever present Osteo Arthritis…..and it is Awareness time for all of them.  There are numerous types of Arthritis, I didn’t look up the total number but I’m lead to believe there are over 300 types of Arthritis so don’t be surprised if you have more than one of them working their bad magic in you body.

Each of us may be struggling with the same problem as I type this, but more than likely we each are struggling with different problems with the same chronic illness.  Not only that but   not often are we taking the same medication to deal with a similar problem, the possibilities are endless.  These illnesses are so versatile, filled with varieties of damage to our bodies, different types & levels of medication, and how we each react to it all.  I have a high pain tolerance and you have a low one.  You can take oxycodone for pain along with other narcotic types of pain relievers, I cannot.  I can still walk and do my own shopping and will admit it’s easier to walk pushing a cart, you no longer walk at all and use a motorized cart to get around in.  I worked for many years while coping with my lupus, you had to quit work and eventually received disability help.  I’ve always had good insurance coverage for my medical problems, you don’t.  My husband is very supportive, yours asked for a divorce.  Your family (parents, siblings, children) understand your illness, my mother & sisters never believed my diagnosis.

So what I’m really saying is:  be aware of your chronic illness whether it’s arthritis, lupus, fibromyalgia, MS, or any other autoimmune medical problem.  My lupus is mine and your lupus is yours however we will share many like happenings and many different problems. My doctors are an Internist, Cardiologist, Endocrinologist, Chiropractor, Rheumatologist and your doctors may be the same or….may not.  Over the years I’ve also seen a Gastroendologist, Nephrologist, Hematologist, and believe it or not a  Hypno-therapist.  It can take an awful lot of those “ologists” to keep you on your feet.  So do what you have to do to keep yourself as well as possible…..when it comes to your health be assertive when needed and be downright aggressive when you have to!!  DO NOT SIT BACK and do nothing but complain.  When you start complaining, it’s time to take action.

for your information I will also post this on the forum as some people go direct to the forum and skip the home page completely…….  CAROLYN <3

Silly Kitty to make you Smile

If you haven’t been to the forum before you are in for a treat, especially if you want information on Lupus and/or Fibromyalgia, and it doesn’t end there….there’s information of various medications, other forms of arthritis, and you can ask questions or make comments.  You do have to sign in first & leave your email addy to be able to ask questions but you can always read any of the articles that you’d like.  And don’t just read the first article you come to, scan down through all of them and find those that pertain to you and your questions.

For those of you with Lupus you are probably familiar with the new medication Benlysta that recently was introduced for our use.  May is Lupus Awareness Month and Benlysta is having several seminars to promote their product and inform all of us just what Benlysta is and when it can help lupus patients. There will be rheumatologists, nurse practitioners and  infusion medical professionals present to help all.  Here is a list of where those seminars will be held:

Doctor’s Appointments don’t seem to happen once a year when you have a chronic illness.  After I first received my diagnosis of Systemic Lupus Erythematosus (SLE) my doctor’s appointments came very close together and that was due to the fact that the lupus was extremely active, and often seriously active.  There were times that I had an appointment every other week, and when my blood was clotting I often was having weekly labs to regulate the medication.  As we were able to control things better I would see the doctor every other month and sometimes every 3 months.  When you have appointments this often with your doctor, he soon learns how well you are complying with his instructions, which in turns shows how well your current medications are working or….not working.  One thing leads to the next….if something is not working well, then try something different.   

The better you are feeling, the better your body responds, the less flares hopefully you will have.  The fewer flares you have, the farther apart your doctor appointments will be.  When I went into remission, after having come off of almost all of my medications, I only saw the doctor every 6 months.   I was doing so well, and we were traveling all over the United States that I only saw a doctor once a year for several years.   We have a new doctor now and he prefers to see us at least on a 6 month basis, due to our age and our histories.  We like him.  He is easy to communicate with and he has “caught” some things that needed early catching.  I’ve been doing quite well and this 6 month check up I decided to ask him if he would please check my thyroid.  ( I have a family history of thyroid problems.)  Dr L readily agreed to my request by ordering out not only blood testing but a thyroid ultrasound.  

Two days after the ultrasound I received a call that the doctor wanted to see me.  One side of my thyroid had some large nodules while the other side had a complex vascular mass of small size.  A malignant mass  At four P M  I put in a call to an Endocrinologis,t that had been recommended by a friend, and who agreed to see me on Monday.  Wednesday I went back for the biopsies and here I sit waiting to hear the verdict.  Yes, I have thyroid cancer, however I must find out ‘what kind’ it will be so we can decide how to take care of the problem.  I’m glad I asked for the test.  I’m glad my doctor followed through on my request.  I’m agreeable with my doctor preferring to see me every six months.  All things considered I’m hoping for an easy solution to my new diagnosis, however I acknowledge that it is, what it is, and we will take care of it one step at a time.

I hope you will comply and communicate well with your doctor and I hope you will listed to what your body is trying to tell you.  Make it easier to maintain your own good health, regardless how often you need to see your doctor (s).

Gentle Hugs………Carolyn

There are a couple of things that always makes me feel better even on my worst days and one of those is waking up to sunshine and finding out the day is one of those perfect 75 – 80 degree days with a light breeze.  A perfect day to sit outside, in the shade of course, and enjoy the sound of the birds and watch the squirrels play.  Sounds pretty good doesn’t it.  Sometimes something simple is all it takes to make me smile, make me forget that I was really stiff & sore when my feet hit the floor this morning.  It has been really pretty all week here in Livingston, Texas where spring is more like summer.  One old cowboy told me that spring in Texas was usually only one day before summer hit!  And he may be right as it’s been in the 80′s all week.  Jerry & I took Harry for a walk today to the post office. to pick up our mail, now it’s not far….maybe like 2 city blocks from us…but by the time we got back I was tired & so was little Harry.  I think Harry needs his summer haircut to perk him up in the sunshine.

Another thing that always makes me feel better is that “happiness” feeling…any thing that makes me smile or even laugh will wipe away a whole lot of pain.  Sit thru a funny movie and laugh out loud, you never feel pain until the movie is over.  As far as that goes, any movie that holds my interest will drop my pain level for awhile; and so will a good book or some great music.  My extra fun, “dull the pain” time,  is when I get out my stamps, inks, paints, glitter, papers, and I start to create.  Find those things that work for you.  If you can take codeine, morphine and other narcotic style drugs to dull your pain, then great for you….my system does not tolerate them so I have built my own way to deal with pain.  Do what works for you without doing what harms you further.

AND ABOVE ALL ENJOY YOUR SPRING….and I hope it does not include any late snows or early tornadoes.  Be well, be happy, be safe!

Spring Waterfalls so refreshing!

It’s Spring Break this week in Texas, and I imagine if you don’t have it this week, you will next week in your state.  Spring break means head for the beach, or head for the mountains, or as a last result head for the mall.  For high school and college age kids you will pick one of those three according to how much money you have…or daddy has, and you’ll be off for the week having fun.  Swimming, climbing, shopping, dancing, partying!!!  However if you are someone who has a chronic illness like lupus, fibro, or arthritis you probably aren’t doing much of any of those things.

Let’s see maybe you are lying on the sofa watching some reality show on television; or maybe you are at the hospital having your weekly; maybe you are working on dinner while someone else is cleaning your house; possibly you’re getting ready to attend a support group meeting; and maybe you’ve just finished checking your emails, and now it’s time to check out the forum to see what’s new.  OK, none of that is as good as having fun with your friends, but you can plan ahead a bit and maybe be able to enjoy getting together with one or two of your friends.  If you aren’t in a bad flare you can do some yoga or low impact exercise together instead of swimming and dancing.  If your friends are busy then it’s time to sit down and make a list of things you can do by yourself.  You know, one o f those things you would do if you were healthy.  Organize your photos, write a long over due letter, read that book you’ve been meaning too, or get out your computer and Google those medicines you need to know more about. It’s a list you can add to as you think of things that you can do when you need to be quiet, when you are coping with a flare up.  When the time comes that the doctor says you need bed rest, or need to keep your feet up, or just need way more rest….reach for your list and pick an item, any item and go with the flow.

Plan ahead for the flares and they will be easier to cope with with……don’t just let the flare take over your life….cope with it and cope with it in style.

Reading books is big on my list!

I am sharing another group’s brochure to do a little advertising for them…if you live in the Northern Virginia area mark it on your calendar….should be a good one.

Optimizing           Health                   Saturday

                ! ! ! ! ! ! ! ! April 21, 2012

2:00 – 4:00 pm

Sully Governmental Center

   James McDonnell Room      4900 Stonecroft Blvd     Chantilly, VA 20151

Speaker: Bill Reddy     Acupuncturist

  Professor at Virginia University of Oriental Medicine

Director of the Integrated Healthcare Policy Consortium

Former President of the Acupuncture Society of Virginia

Former Vice President, American Association of Acupuncture and Oriental Medicine

Studied under graduates and professors from Beijing and Shanghai medical schools.

Author of over 60 publications/professional papers. Lecturer of Qi Gong and Tai Chi.

Learn about:! ! !

Cutting edge approaches to fatigue and chronic pain

Changing eating habits to shed pounds

Avoiding this food group if one has anxiety or insomnia

Optimizing wellness with these three aspects of life

What “Health Food” will keep women from getting pregnant

What meal to never skip in a weight loss program

What supplement relieves bloating or gas after meals

Five strategies to relieve stress

What popular multivitamins are better in your trashcan than in your body

Key symptoms to look for if you have parasites

The Northern Virginia CFS/ME, FMS, OI Support Group presents

If you’ve kept pace with us for awhile you remember that Jerry & I  travel a great deal in our Motorhome.  In fact at one time it was the only home we had….that is known as being a “full-timer”, in the RV industry.  There was a period of many years when my lupus along with fibromyalgia was not only active but extremely serious.  We had an RV (recreation vehicle) at that time but was only able to use it on those rare occasions when the doctors would approve and the chronic illnesses would take a bit of a rest.  No one knows why but I was fortunate to have the serious part of my lupus to go into a remission that no longer included the steroids or blood thinners which had been a major part of my life for many years.  It would be nice to say one thing or another pushed it into remission but there’s no way to know why.  It’s the same answer for that as there is to “why did I get lupus to start with”….and that is “WHY NOT?”

Looking back there has been a lot of lessons to learn  during the times of getting a final diagnosis, the severity the illness became, the way it went into remission and where I am today.  The first thing we did when I finally found out what was causing my many problems was to start learning as much about lupus as possible & joining a support group and over the past 21 years that has kept me going and led me to here.  For all those years I have been sharing all that I’ve learned with others, and many have shared with me.  I’ve been a leader of a group, spoken to other groups, helped start sister groups in other countries, published a medical newsletter, developed a website, been a part of a “leaders” group, along with being a member of support groups myself.  There’s always something new to learn and something new to share.  I hope to be able to do that with you for some time to come.

It’s not just doctors and medicine; it’s not just lab tesst and x-rays; it’s not just hospitals and physical therapists.  It’s learning ways to cope with your particular illness and it problems when it comes to working with your friends and family; learning how to say NO when you should; learning ways to remake your new life now that you have a chronic illness; it’s ways to raise your children and learning how to prioritize the needful things in your life.  What is the easiest way for you to fix a meal for your family when you are not feeling up to it?  What is your secret to getting the extra sleep you now need?  If you are still working outside the home, what are your secrets to handling the challenge?  Share with us and we will share with you.  Ask a question, make a comment….you are not alone!  We are here and we care!

Click on FORUM and look at all the great articles….talk to us!

Carolyn

Padre Island Texas on the Gulf of Mexico The water is warm 02/2012

and we’re glad you did.  This is an active online support group for those with Lupus and/or Fibromyalgia…and all the extra side ailments that go along with them.  This is also a very good place for those caregivers and/or good friends or family members who need to understand what the patient who has been diagnosed with Lupus & Fibromyalgia are trying to cope with.

And I did say “trying” to cope as when the illnesses are very active it is quite a job to cope with!  If you’ve had the illness for very long, they tell me I’ve been working with my lupus for 50 years at least….then you have a better idea of what you need to do to handle it with care & grace.  It is not easy to look graceful when you’re in pain, swollen, covered in rashes, over-weight, restless legs and numb feet, and I could go on and on.  Just know these two illnesses have so many side effects, have a variable way of acting from mild to extremely serious and in the case of Lupus it includes the possibility of an earlier than normal death.  

No two patients will be suffering from the exact problems at the same time.  Lupus can attack any organ at any time, and sometimes more than one at the same time.  Fibromyalgia at present time shows no permanent damage but the pain can be so severe you feel as if you are near the end!  Near the end of your rope for sure.  So know you are welcome here and you have several choices: you may go into the forum and start looking at all the many articles that may pertain to you right now; or articles that may help you in the future as your illness progresses…..lots & lots of articles.  You can leave comments on any & all articles IF you have signed in & registered with us.  You may also ask questions.  Our resident RN can help you, I will try to help you, and if it’s a technical problem, our webmaster can assist you in learning your way around.

WELCOME WELCOME WELCOME

Carolyn

The Look of Lupus

When I was in high school many years ago I was a member of the FHA & therefore was in the Home Economics class.  On February 14th, also known as Valentine’s Day, we celebrated Sweetheart Day.  The first of the month we placed our names in a box and then drew out a name who would be our “Secret Sweetheart”.  From then on until the 14th we were to do something nice or give some little thing to the name we had picked, every day and had to do it secretly.  Usually we would have someone else give her a card, or we might place a candy bar on her desk, or maybe she would find a small tube of handcream in her gym locker, a lace hanky or a new ballpoint pen would just appear.  None of the little gifts were very expensive, it was juts a gift from the heart.  Then on the 14th, you would reveal your identity.  Maybe that all sounds a bit silly to you, but sometimes the name you drew was someone you didn’t like much, or someone you didn’t even know.  The best thing about Sweetheart week was looking for the right things to do or give the name you had, and the second best was when when you revealed whose name you had.  It was a lesson in thoughtful giving….the thought really does count.

After high school many of us were married and many went on to colleges, but many of us still picked a name on the first of March and carried out our own Secret Sweetheart fun.  It really is so much better to give than receive. If you’re reading this you probably have lupus or fibro or some other chronic illness, and you probably feel pretty bad with all the medical problems that the illness brings to you.  And just maybe you know someone just like you,  someone who hurts too!  Push yourslef to pick your name —or maybe two or three names — and send them a little note, unsigned of course.  Then maybe you could send them a postcard or a Valentine’s card, the ask another friend to drop off a box of peppermints one day…………..and then on the 14th, let them know it’s you, maybe you’d be able to give them a big hug.

Now if you’re a guy, it should be easy to pick out a sweetheart as you probably have a real one.  Just think how surprised she’ll be to start receiving little gifts every day for a week, and then you can give her a big one on the 14th.  Whether you’re sick or well, giving and receiving can be a great way for you to move above your illness.  Don’t over do, just do what you can…..you’ll enjoy it and you’ll appreciate it.  We do not have the life we had, things change but we still have a heart that is full of love, and we can carve out a new life for ourselves.  One that we can handle, and one that we can enjoy however limited it may be. It will be our new life and we will know it’s OK to change our lifestyle as we need to.

Happy Valentine’s Day….and I hope you’ll have a Secret Sweetheart this year.

Carolyn