Friday, June 8, 2012

Words That I Wanted to Hear

In all of these years of living with lupus, there are certain words I have never heard.

"You will get better."
"You will recover."
"You will go into full remission"

Never.

I didn't gradually lose my ability to function. My experience with lupus was comparable to a truck crashing 60 mph into a concrete wall. In a very short period of time I went from juggling motherhood, full time career, and a fulfilling social life to a dead stop in which I could barely participate in a conversation, or crawl out of bed.

After the confirmed diagnosis, and some relief at finally having a name for this lupus foe that entered my life,  I started to bargain with my rheumatologist about getting my old life back.

I still can remember asking him, "When I get better how close will I be to the way I was BEFORE?"
He hemmed and hawed. Through appointment after appointment I persisted.
Finally he said, "Maybe 80%."
I accepted that answer. The poor guy. I think he wanted to offer me hope. Doctors must always tread carefully on a patient's hopes.

There has been no 80%.

And even if I had gotten up to that mysterious 80% boundary, not too many employers or people want only 80%.

For years I fought lupus; long hard knockdown fights in which I remained bolstered up by a dangerously high octane level of denial.

I would run into each lupus battle arms swinging, throwing my hardest punches... which were mostly mental. I would tell myself, "If I only try this diet, or that exercise regimen. If I avoid this, but take up that. If I rest in bed for a few days, if I just push through the fatigue and act like it's not there, then this will all go away."

I think that is the stage of grief commonly called Bargaining.

Denial didn't work.
Neither did bargaining.

So anger replaced my bargaining chips. I didn't know I was so angry. I was raised to be a "nice girl". Nice girls never show their temper. I lashed out everywhere. At people (whom I still apologize to every time I cringe with remembering how angry I was.) and  my anger took a peculiar delight in the all or nothing approach to not coping.

I used to be a professional singer and pianist. The disease damaged my shoulder joints and my lungs so badly that every attempt to play was like a marathon effort without ever reaching the finish line.

I was so mad about that, I didn't touch the piano for years. If I couldn't play perfectly the way I had before, I wasn't going to play at all.

And why bother singing? What ever for?

When I did try to play and sing, the music hit the deepest core of my emotional pain. Music can do that. And for me the experience was like the death of a loved one.

Over and over and over again.

So I punished myself by denying the joy that can also be found in music.

I wanted to hear someone tell me I would be able to perform again.

No one ever told me I could perform again.

I held onto the anger for a long time. Years. But, I still had enough of my old optimistic self left to try to make some sense out of all the things lupus had stolen from me.

I thought I was being punished for being so arrogant.
A priest told me to not even go there.
I thought I was sick because I had given myself lupus.
No, I didn't do this to myself, but I can bet you  that most people with a life altering disease wrack themselves over that question.
Was I a victim of pollution? Bad living? An extremely stressful life?
Maybe, but, there is no comfort to be found in that way of thinking.

Just more anger.

I scoured my Catholic faith. I explored the suffering of Jesus Christ. I studied the mystics who have been known to encounter profound physical suffering. I read the about the works of Mother Teresa and her words.

I filled myself up with inspiration about understanding others' suffering and about helping them.

Then  I explored other world religions. That underlying message of compassion threads its way through all the great teachings. I studied the concept of surrendering the ego. Letting go of this misconception that I am an individual. I practiced embracing the reality that humanity is all one and  that we are interconnected with all the living things that surround us.

Some where during all of this exploration, the bargaining dissipated. And the anger vanished.

I still can't tell anyone why I have lupus.

I seriously don't care why I have it any more.

But, I can tell you what lupus has given me.

And I can honestly tell you that although I want to be 100% healthy again, I would never have passed up this opportunity to live with lupus. Because this stupid disease gifted me with so much more than I could have ever hoped for myself.

I heard messages I never expected to hear.
 Messages from exploring spirituality and messages from others who are also learning to live beyond lupus:


YOU ARE LOVED.
YOU ARE PRECIOUS.
YOU HAVE A PURPOSE.


And this is the message I send out to all of you.

If you are struggling on your own with lupus, please consider joining up with my Facebook group Bloom Where You Are Planted .

This group has been set up to provide a place on Facebook for people living with chronic disabling illness, those waiting to be diagnosed, and our caregivers to visit in order to receive and give support to each other in a compassionate setting.

When life has stopped you in your tracks, and you no longer may go in the direction you had wanted to go... plant your roots deep and strong where you now must rest and BLOOM WHERE YOU ARE PLANTED.




Monday, February 27, 2012

Growing Out of the Darkness

The lotus flower grows deeply in the ooze at the bottom of murky ponds. The plant is hidden far from the pure light of the sun...


 hidden in the gloomy depths...


yet, the lotus is destined to grow and bloom.


When the time is right, the lotus blossom emerges through the mud of the pond remaining untouched and pure from the sludge from where it grew.


In many cultures, the lotus bloom is the symbol of perfection and rebirth.


Are you trying to grow out of the darkness?


What soil has your life been planted into?


There is hope. Like the lotus blossom, we are all capable of flowering out of the depths of suffering and becoming beautiful in spirit.


Ask yourself today:


What has this disease given me?


Someone asked me this very question while I was away on a healing retreat. She said, "What has lupus given you?" I was shocked at such a bold question. Yet, the timing was right.


Without lupus, I never would have returned to my passion of writing. Without lupus, I would never have had the opportunity to be home full-time with my child and husband. Without lupus, I never would have made so many wonderful supportive online friendships. The list goes on, but my point is...


In the depths of the darkness of your soul's journey, there is an opportunity for you to grow. And there will come a time when you will feel the light once again and let your beauty be seen.


This is what it means to bloom where you are planted.










NOTES:


In Buddhism, Hinduism, and in the ancient Egyptian culture the lotus is the symbol of purity and rebirth.
In Christianity we believe that rebirth is possible in the one lifetime we are given.











REFERENCES:


Ecclesiastes 3
The Symbolic Meaning of the Lotus Flower
Lotus Flower Meaning






Monday, January 30, 2012

5 Qualities to Look for in Friends When Living with Lupus

Living a life that goes beyond having lupus control your life means choosing your relationships carefully.

You do not have the energy to expend on people who do not enrich your life.

I am not saying that one should be cruel, but, living with lupus means setting very clear boundaries in regards to whom you allow into your life.

Listed below are the 5 best types of friendship qualities that draw a path towards well being.




1.   LOYALTY



Going through a health crisis teaches you who your true friends really are.

There are painful lessons, because those whom you trusted to be with you through your life may abandon you.

Some people "nice" you out of their lives. They are polite, but the warmth no longer is there.

 Some people stop contacting you because you are no longer of use to them. You can no longer volunteer for this, you can not promise to show up for that. They don't comprehend and don't want to bother to try.

Some people simply vanish. They don't know how to cope with illness, and they certainly do not know how to cope with you trying to cope with the illness.

 Once in awhile you may actually be gifted with the blunt truth, "I'm sorry, but, I can't deal with you having lupus." (I actually had someone say that to me and end the friendship.) Well... that one hurt big time, but at least I knew the reason for the relationship ending.



Loyalty is a person's ability to make a commitment.

When you live with a chronic illness, you may want to consider looking towards people who can maintain a lasting friendship.

Observe how a potential friend treats other relationships in her life. Does she gossip? Does she create "drama"? Does she enjoy the game of "frienemies"; being best friends with a woman one day, fighting the next and back to besties a week later?

You do not need that energy.

Find people who are willing to stay in friendships, this will serve you best in the long run because you will have a friendship that may stick with you when you need friendship the most.

2.   INTELLIGENCE


I am not talking about college degrees and book smarts.

Find people who are intellectually curious. More often than not, they are terrific conversationalists.

They are the friendships that can take your mind away from your daily woes with the art of bringing new knowledge to you.

Intelligence also means having the ability to be really good at something. There are people who are emotionally intelligent or socially intelligent. There are those who have intelligence about certain hobbies or skills.

One of my favorite telephone friends has the wonderful intelligence of simplicity. She is an uncomplicated soul who always brings me back to a deeper appreciation of what is already present in my life.

And in turn, find the friends who share the same intelligence that you hold. This type of friendship will give you the joy of sharing and appreciating your gifts together.

COMPASSIONATE


Compassionate people have the ability and willingness to love saints and sinners equally.

You don't have to have lupus to need a compassionate friend. They are rare and truly a blessing if you ever find one.

You will know you have a compassionate friend when the only thing you ever need to be when you are with her...

is to simply be yourself.

INTERESTING


Life needs its eccentrics and so do you. You may not have the most intimate of friendships with your interesting friends, but they have the talent to make you completely lose yourself and forget your troubles. The interesting friends are the ones who challenge you to let loose you inner weirdness and who allow you to live vicariously through their own adventures.

Interesting friends add the spice to life.






CROSS GENERATIONS


Make sure that your friends come from a cross section of ages. Older friends bring you the wisdom of their own life experiences. And having friendships with older people with lupus gives you the opportunity to meet your own challenges. By learning from those elder than you, you will learn to not only survive, but to triumph.

Have friends who are also younger than you. They will keep you young, but the greater benefit is that younger friendships create an opportunity for you to give back. Befriend younger lupus patients and mentor them if you are able.

The best way to live beyond lupus is to take the lessons you have received and to share those lessons with the next generation.




One of the best things to occur once you regain your footing after diagnosis is to realize that you have friends in places you never realized. You will also learn that you have the potential to make lasting friendships with people you never would have met if not for the lupus.

Monday, January 23, 2012

Cure versus Heal

Being cured is not the same as being healed.

Cure means the absence of disease.


Healed means being returned to a sense of wholeness.


It is possible to be healed even if you never obtain a cure.












Wednesday, December 7, 2011

Lupus Vendors: mesameli

Meli is a graphic artist and jewelry designer.

She is a fearless woman.

Her courage grew on the most traumatic day of her life, July 4th, 1993. On that day Meli lost her husband, Russ, and her 12 year old son, Christopher, in a drowning accident. Meli had to go on to make the most heart wrenching decision that any parent could possibly be asked to do...
she had to decide to take her child, Chris, off of life support .

 Both Russ' and Chris's organs were donated and helped  over 200 people.

 Meli lives her life to honor her son. She went to college and pursued her dreams trying to live out the full life for her child. She carries Russ and Christopher in her heart everyday, and not a day goes by when she doesn't miss them.

Here is Meli's story in her own words: The Hardest Thing I Ever Did

Meli now has AAS degrees in Computer Art/Illustration, Web Page Design, Desktop Publishing, and Digital Imaging.

She has recently started to sell  her jewelry work.


Click the link below to visit Meli's ebay site:







Meli's home page: http://www.daiseyblue.com/



Tuesday, October 11, 2011

Lupus and Style - Make-Up

Nicole Paxson Cosmetics





Nicole Paxson knows firsthand that beauty goes beyond skin deep. For Nicole a long history of struggle with the chronic illness Lupus has granted her the gift of a more beautiful perspective. Since 12-years of age, Nicole survived strenuous bouts of Chemotherapy, sun sensitivities, blood disorders, plus the red "butterfly rash" along her face and body associated with the illness. Today, Nicole is fighting back to change the face of the disease altogether by creating something magical- a cosmetic line that allows all types of women, no matter what challenges they've faced, the ability to regain their confidence through flawless skin. READ MORE

Wednesday, October 5, 2011

Alliance for Lupus Research Virtual Walk


Walk with Us,

America!

Saturday, November 12th, 2011 

ALR Virtual Walk Day

In 2011, the Alliance for Lupus Research launched Walk with U.S., Walk Local Cure Global Virtual Fundraising Event.  The virtual walk allows people around the country to raise crucial funds for lupus research and increase lupus awareness by walking anywhere they want and with anyone they want.  Thousands of ALR supporters across the country will join our quest for a cure and walk virtually on November 12th, why don’t you join us?  100% of every dollar raised through the ALR’s Walk with U.S., Walk Local Cure Global Virtual Walk goes directly to support lupus research programs. 

Walking for a cure is easy, empowering and fun! Gather your friends, family and coworkers on Saturday, November 12th, choose your own walk site (local park, your neighborhood, parking lot, or corporate complex), walk length and time. There is a $20 registration fee to participate, and all walkers are encouraged to fundraise and solicit support from family, friends, co-workers and business associates to raise even more for lupus research. 

Together, we will find a cure. The mission of the Alliance for Lupus Research (ALR) is to find better treatments, prevent and ultimately cure systemic lupus erythematosus (SLE, or lupus), a debilitating autoimmune disease, by supporting medical research. Because the ALR Board of Directors funds all administrative and fundraising costs, 100% of all donations received go directly to support lupus research programs. Founded in 1999 by Robert Wood Johnson IV, a member of the Johnson & Johnson family and owner of the New York Jets, after his daughter was diagnosed with lupus, the ALR has become the largest private funder of lupus research in the world.  To date, the ALR has committed over $65-million to innovative and aggressive lupus research. 

About Lupus Lupus is an autoimmune disease that can affect almost every major organ in the body, including the heart, kidneys, skin, lungs and brain.  Symptoms are unpredictable and can range from fatigue and joint pain to severe organ damage. Too often fatal, lupus is extremely difficult to diagnose and treat.  The US Department of Health and Human Services estimates the number of Americans suffering from lupus at approximately 1.4 million–making lupus more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis. Although there are many men and children living with lupus, 90% of those diagnosed are women.  Lupus is 3 times more common in African-American women.  Women of Hispanic, Asian, Pacific Islander and Native American descent are also particularly vulnerable.

 

Get Involved Today Join the ALR quest for a cure as an individual supporter, or sign up a team and recruit support from your circle of friends, family and co-workers! 
Visit virtualwalk.lupusresearch.org to register online or call toll free, 1-866-WALK-ALR.



For additional information, contact Heidi Aldama at 773-283-4533 or email, haldama@lupusresearch.org

Alliance for Lupus Research ∙ 28 West 44th Street, Suite 501 ∙ New York, New York ∙ 10036 ∙ 1-866-WALK-ALR ∙ virtualwalk.lupusresearch.org




National Virtual Walk





Tuesday, September 13, 2011

Lupus and Sjorgren's Syndrome

Sjorgren's Syndrome is a chronic autoimmune disease in which a person's white blood cells attack the moisture producing glands.

Sjorgren's Syndrome can occur in association with lupus, as well as, rheumatoid arthritis.

Learn More:

Sjorgren's Syndrome Foundation

Sjorgren's Syndrome and Lupus (LFA)

People with Sjorgren's

Venus Williams   (Tennis Player)



The "Invisible Disease" That Forced Venus Williams to Withdraw From the U.S. Open



Updated September 2011



Venus Williams photo credit: What Is the Trend?

Monday, September 12, 2011

Lupus and Teenagers (Adolescence)

Lupus and Social Isolation in Adolescence: Part 1 - The Tasks of Adolescence



Lupus and Social Isolation in Adolescence: Part 2 - Steps to Coping






VIDEO CLIPS:



S.L.E. Lupus Foundation: Life Without Lupus

Young woman shares her experiences of coping with lupus through childhood and teen years.







BOOKS:

It's Not Just Growing Pains: A Guide to Childhood Muscle, Bone and Joint Pain, Rheumatic Diseases, and the Latest Treatments

Metal Butterfly: Lupus, the enemy that lurked within me


LINKS:


Bone Health:   


 Bone Health - Lupus Now






External Links:


- GROWING PAINS (American Chronic Pain Association) Growing Pains is a support group for chronically ill youth.




- Early Diagnosis of SLE in Childhood - Lupus Foundation of America, Inc.



-LFA: Minnesota Chapter: The Adolescent With Lupus as a Young Adult


-Chronic Illness in Adolescence


-The Lupus Society of Hamilton Lupus in Childhood and Adolescence


-Parenting Power: bringing up teenagers


-My son, age 14, has just been diagnosed with lupus. READ MORE --->



Updated September 2011

Lupus & Muscles








From the Lupus Foundation of America


"It is not uncommon for people with lupus to experience muscle aches and pain (myalgias) or have inflammation of certain muscle groups (myositis), which causes weakness and loss of strength. More than 90 percent of people with lupus will experience joint and/or muscle pain at some time during the course of their illness. In fact, more than half of the people who develop lupus mention pain in their joints as their first symptom." Read More