#78 - Rheumatologist

Rheumatologists specialize in treating people with arthritis and people with autoimmune diseases such as systemic lupus.


Liverpool rheumatologist, Professor Robert Moots, explains that he ".... would not swap careers in a million years":

BBC NEWS Health Inside Medicine - The rheumatologist

#77 - Angry at a Dead Man by Gaia_song

Cigarette smoking effects more people than you can imagine.
Read this beautiful eulogy to a co-worker:

Art of Calm: Angry at a Dead Man

Thinking about quitting?
Click here for more information to get you started:

Quit Smoking Smoking Cessation Quit Smoking Support Nicotine Addiction

#76 - Lupus and Sunscreen Bombshell

Online author and Lupie pal, Karyl has posted some very important information about lupus and sunscreens. Please take a moment to read this update:

sunscreen research bombshell

#75 - Lupus Quickie Meal

I do not like to cook when there is not another adult here with me at the Cozy Cottage.

Like many people with lupus, I have memory lapses. Sometimes these lapses are caused by medications, fatigue or by the lupus itself.

No matter what the cause, I have had too many episodes of forgetting that I have turned on the burners or the stove.

Today is rainy and cold, and I get really tired of peanut butter and jelly for lunch.

So today it's PIZZA BURGER for lunch!

YUM!

Here is a quick easy taste treat that can be microwaved.

Morningstar Farms

I highly recommend the pizza burgers.

Very tasty and only 110 calories. Toss it on some whole wheat bread for a delicious sandwich, have some fruit or yogurt for the sweet tooth

ENJOY!

#74 - Lupus the Enemy

Something to think about when lupus has you feeling like you are fighting a battle:

"In my own experience, the period of greatest gain in knowledge and experience is the most difficult period in one's life. ...
Through a difficult period, you can learn, you can develop inner strength, determination, and courage to face the problem.
Who gives you this chance?
Your enemy."

-His Holiness the Dalai Lama

From "The Pocket Dalai Lama," edited by Mary Craig, 2002. Reprinted by arrangement with Shambhala Publications, Boston, www.shambhala.com.

Originally from http://www.beliefnet.com/

#73 - Lupus Photos

I had posted links to these photos a while back without success.

Some folks expressed interest and disappointment when the lnks did not work...

So this time I am just providing a link to the medical website that offers photographs of what lupus looks like on the inside:

PEIR Digital Library: Search Results

#72 - Social Security Disability

Blogger, Tim Moore, offers what has got to be the best resource out there for information regarding Social Security Disabilty:


Social Security Disability SSI Blog

#71 - Fun with Anatomy

Here is a fun (and slightly addictive) interactive site to help you figure out what goes where:

BBC - Science & Nature - Human Body and Mind - Interactive Body

#70 - Depression: Treatment, Recovery, and Maintenance

Here's the short and skinny on depression treatment:

WebMD with AOL Health - Depression Recovery and Maintenance Medications

#69 - Anniversary

Wednesday, May 28, 2003, was my last official day of work at the mental health clinic.

Two days later I received a call from a nurse stating that my skin biopsy tested positive for lupus. I received the call the morning of my farewell luncheon at work.

I never showed up to the party... I couldn't stop sobbing.

I was too embarrassed to have my colleagues see me so upset.

It took another two weeks for my rheumatologist to read the report and verify that I have systemic lupus.

I found out via the telephone.

I left behind a career that I had a passion for. That is a rare gift, to be able to wake up in the morning and look forward to going in to the office.
My job was very stressful, but never dull.

I woke up this morning dreading the day ahead of me.

I have to clean out the frig.

I have to fold laundry.

Instead, I have been sitting on the couch with a cup of lukewarm coffee, as I tried to swallow all of the medications that are supposed to keep the lupus at bay, and cried while watching ER reruns.

It is noon and I am already exhausted. The migraine is nibbling around the edges, and I know that any attempts at cleaning today will make the pain and fatigue worse.

New symptoms this morning, some facial spasms... yippee... one more thing.

I miss my job.

I miss the people who came to see me for help.

I miss the frustrations, the stacks of paperwork, the phone calls, the failures and the successes, the hard earned smiles from people who thought life was hopeless, and the tears shed as the healing journeys began day after day, week after week, year after year... I miss it all.

I miss being witness to other people's triumphs.

I miss the sticky fingered hugs from the little guys, the kids who practically bounced off of the walls from hyperactivity, the silent rages of the angry kids who were really just fronting a big hurt inside.

I miss the sad parents, the angry parents, the tired parents, the missing parents and all of the other adults who came in who for all intents and purposes were parents... even when there was no blood connection.

I miss the boring meetings... okay!!

I don't miss meetings.

Phew... I thought I was going to lose it for a moment.

This month is my three year anniversary.


In three years, I have:

* watched my son start school
* watched my husband become more wonderful than he already was
* taken in two cats
* written at least 10 blogs (I lost count)
* read commentaries on the radio
* lost friends because they could not cope with me being ill
* gained friends because they like me even though I am ill
* watched my best friend die
* gone on antimalarials, oral chemotherapy, steroids, antidepressants, muscle relaxants used for MS, NSAIDs, and painkillers
* watched my hair thin out and my eye lashes falling out
* lose 12 lbs., gain 10 lbs.
* forget the names of people I know, and details they have shared
* embarrassed myself a kerjillion times when I have tried to act like the "old me"
* slid into middle age
* cried a river
* and laughed at myself countless times

As I have said before, I am not the poster child for bearing up bravely while under duress.

I have been living with lupus and kicking and screaming about it practically the whole way.

Oh well.

I have written so much about this lupus mess that I have enough material for a book...

or two...

or more.

That's because I never shut up!

The lupus keeps me from talking very well now... but, somewhere in Divine mercy, I have been allowed to write.

I didn't ask for this.

No way.

This is not fun.

I wake up and I just want to go back to sleep. I want to hide under the covers until this lupus thing just passes.

I am a coward.

But, this thing is not passing me by. And I can not spend the rest of my life waiting for that time when I may be able to go back to my career.

I believe that after three years, I am pretty sure my career is gone.

Right down the tubes with the tens of thousands and thousands of dollars it cost us to get the training to become a social worker.

Bye-bye.

But, here's the secret to happiness for my time being...

I am still a social worker.

Lupus took away my stamina, my short term memory, and my ability to multi-task,

but the knowledge and the experience are still there.

So in three years I have been learning to shift gears.

You have no choice.

You have to adapt or you will fall into despair.

I've been to despair.

It's a really awful crummy place to be.

Take my word on this, don't go there.

Having lupus does not mean your life is over.

I know people with lupus who are in absolutely horrible physical condition, but their hearts are so big... it is overwhelming.

Such small gestures as a little card, or home made gift.

A quick e-mail.

A phone call.

Costs nothing and gives so much.

Life does not end with lupus.

Life changes because of lupus.

That's all.

My life has changed.

Some parts are extremely painful and difficult to visit too often.

But, you want to know something?

There are many ways that my life is BETTER since I was diagnosed with lupus.

Yes...

Better.

I could write a long list of how things are better, but I will spare you all of that.

Here's a suggestion, though.

Every night before you go to sleep.

Count your blessings.

Life is short and terribly unpredictable.

Best grab what lessons lupus has to offer and make an acquaintance with her.

She is a stern teacher.

But, the lessons she has to offer will do you well in this life.

You may never be the same again.

And you will grieve... a lot.

But, now you are a wounded healer. When you see someone who is suffering, you know... you know deep down in your soul just how bad suffering can be.

And with a word, a look, a gentle touch of your hand... you have been graced with the power to help someone else on the journey.

Happy Anniversary, Ms. Lupus...

My enemy.

My teacher.

So tell me, what's next?

#68 - The Sound of Arthritis

Doctors may soon be listening to your knees to diagnose the presence and progression of osteoarthritis.

Read more here:


BBC NEWS Health GPs to listen for arthritis clue

#67 - Medication Non-compliance

Okay...

before we get all crazy with this...

I am the first to admit that I have not always been compliant with medication recommendations.

But, I got over it... and the lupus is much better managed since I got smart enough to realize that telling the doctors EVERYTHING makes for good treatment.

My prescription "issues" circle around the problems with medication side effects and not wanting to slog it back to the doctors' offices to deal with that.

That is a big deal when you are no longer able to drive.

Now I have an excellent working relationship via the telephone with most of the doctors and the pharmacy.

Cuts way down on the stress.

Some folks start to get some results, feel a little bit better and...

zip...

cut out the medications without realizing that it was the medications that were making them feel better.

Some of us with lupus just get so gosh darn sick of having to take pills all day long, day after day after day that we just get frustrated and quit. From what I have seen of this approach people wind up VERY ill.

And some of us are suffering so much that we double dose with or without intent.

Here is an excellent article about non-compliance to prescription medications:

Just What the Doctor Ordered? Not Exactly - New York Times

#66 - Paxil and Suicide Risk

Web MD has another Paxil increase suicide risk in young adults articles posted today:

WebMD with AOL Health - Paxil Suicide Risk in Young Adults

I keep reading this stuff and I am now inclined to add my perspective on this form of reporting that scratches the surface of a VERY complicated disease, depression.

Here's the scoop as I see it:

1. People who are SEVERELY depressed usually do not have the energy to attempt suicide.

That's right. The depression is so bad that people who are in the deepest throes of depression usually can not organize themselves and expend the effort it would take to commit suicide.

When the Paxil (or any antidepressant) starts to take effect... there is a chance of entering a "danger zone" with a patient who has suicidal ideation. They now have energy to make an attempt... they are not far enough along in the healing process to feel any optimism that life can get better.

2. Paxil (and other antidepressants) take an average of 6 to 8 weeks to "kick in". That means one or two pills is not going to make the world seem better. Dosages need to be altered as the physician and mental health team find the "right fit" for each individual.

3. The depression may stem from problems already present in a person's life and/or the depression has created new challenges that will have to be amended throughout the healing process. You can not take medication only and expect results.

Cognitive/behavorial treatment with a LICENSED counselor in the mental health field is required. Research shows that people who participate in antidepressants with counseling make the best improvement gains long-term.

4. Older patients who are using Paxil have not been showing the risk status of patients ages 18 to 30. Here is my theory on this situation.

An older patient has more life experience to draw upon. They very may well have the ability to perceive that their situation will not always be as bad as it is during the recent bout of depression. They may have experienced times that were decreased in depression or even depression-free... so they have that strength to draw upon.

When reporters state that a medication causes people to be suicidal, I find that to be highly irresponsible reporting. There is a risk. Heck, there is a risk if the person DOESN'T take Paxil.

And just like any other medication, there will be a very small percentage of people who are going to have an adverse reaction.

But, speaking as a retired clinician, I will tell you that reporting without stating the WHOLE picture can cause added challenges for patients who are already reluctant to use medications for treatment.

The brain is an organ of the body, just like your lungs or heart. The brain happens to effect the very core of your person, who you are. So people can feel really uncomfortable about using psychotropics to regain balance between the mind, body, and spirit.

When you read news articles with "buzz" headlines... stay alert. Talk to your counselors and/or physicians before you decide to change your medication regimen. If you have been told to use antidepressants (or any psychotropics) for your treatment... express your concerns and fears. You have a right to be 100% informed in regards to making a decision.

If your professional is dismissive of your concerns... find someone else who is a good listener.

The above entry is an OPINION piece and not to be used in any way as a replacement for medical advice.

#65 - Cognitive Deficits in Lupus

Researchers at the University of Buffalo (my alma mater) just received money to explore the connections between lupus and working memory deficits.

Researchers Track Basis of Cognitive Deficits in Lupus - UB NewsCenter


Here is an excerpt from the report:

"As many as 66 to 80 percent of all individuals with SLE have been reported to exhibit cognitive deficits. Recent studies suggest that the most frequently observed cognitive deficits are in the areas of attention, speed of information processing, learning (encoding) and working memory," said Shucard.

To put this in simple terms... when we forget things, even while we are in the middle of doing something... that's the lupus. When we have trouble paying attention... that's the lupus.

Scientists have realized that these problems are not able to be measured by current diagnostic tools, but they know something is there.

My hope is that at the very least the next generation that follows behind us will not have to suffer through years of being invalidated by the medical professions because they have been unable to record what those of us with lupus (and our loved ones) know is a blatant deficit in our cognitive (thinking) abilities.

No wonder we are so gosh darn tired all of the time!

#64 - This One's For "Mean" Moms

Thank you to my sis for passing this one along:

Someday when my children are old enough to understand the logic that motivates a parent, I will tell them, as my Mean Mom told me:

I loved you enough . . .

to ask where you were going, with whom,

and what time you would be home.

I loved you enough to be silent and let you discover that your new best friend was a creep.

I loved you enough to stand over you for two hours while you cleaned your room, a job that should have taken 15 minutes!

I loved you enough to let you see anger, disappointment, and tears in my eyes.

Children must learn that their parents aren't perfect.

I loved you enough to let you assume the responsibility for your actions even when the penalties were so harsh they almost broke my heart.

But most of all, I loved you enough . . . to say NO when I knew you would hate me for it.

Those were the most difficult battles of all. I'm glad I won them, because in the end you won, too.

And someday when your children are old enough to understand the logic that motivates parents, you will tell them.

Was your Mom mean?

I know mine was.

We had the meanest mother in the whole world!

While other kids ate candy for breakfast, we had to have cereal, eggs, and toast.

When others had a Pepsi and a Twinkie for lunch, we had to eat sandwiches.

And you can guess our mother fixed us a dinner that was different from what other kids had, too.

Mother insisted on knowing where we were at all times.

You'd think we were convicts in a prison.

She had to know who our friends were, and what we were doing with them.

She insisted that if we said we would be gone for an hour, we would be gone for an hour or less.

We were ashamed to admit it, but she had the nerve to break the Child Labor Laws by making us work.

We had to wash the dishes, make the beds, learn to cook, vacuum the floor, do laundry, empty the trash and all sorts of cruel jobs.

I think she would lie awake at night thinking of more things for us to do.

She always insisted on us telling the truth, the whole truth, and nothing but the truth.

By the time we were teenagers, she could read our minds and had eyes in the back of her head.

Then, life was really tough!

Mother wouldn't let our friends just honk the horn when they drove up.

They had to come up to the door so she could meet them.

While everyone else could date when they were 12 or 13, we had to wait until we were ready for> marriage.

Because of our mother we missed out on lots of things other kids experienced. None of us have ever been caught shoplifting, vandalizing other's property or ever arrested for any crime.

It was all her fault.

Now that we have left home, we are all educated, honest adults.

We are doing our best to be mean parents just like Mom was.

I think that is what's wrong with the world today.

It just doesn't have enough mean moms!

PASS THIS ON TO ALL THE MEAN MOTHERS YOU KNOW.

(And Their Kids!!!)

#63: Heartwarming Mother's Day Message

Here is an e-mail goody that you may like to share with Moms:

Thanks to D. !

If you send this to just one person, it should make it all the way around the world by Mother's Day.

This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up puke laced with Oscar Mayer wieners and cherry Kool-Aid saying, "It's okay honey, Mommy's here"

This is for the mothers who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted.

This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.

For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who don't or can't.

This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.

For all the mothers who cried outside hospital rooms but smiled inside for their babies and slept in fold out chairs so they wouldn't be so frightened.

This is for the mothers whose priceless art collections are hanging on their refrigerator doors.

And for all the mothers who froze their buns on metal bleachers at football, hockey or soccer games instead of watching from the warmth of their cars, so that when their kids asked, "Did you see me, Mom?" they could say, "Of course, I wouldn't have missed it for the world," and mean it.

This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner.

And for all the mothers who count to ten instead, but realize how child abuse happens.

This is for all the mothers who sat down with their children and explained all about making babies. And for all the (grand) mothers who wanted to, but just couldn't find the words.

This is for all the grandmothers raising their grandchildren because their daughters (or daughters-in-law) can't.

This is for all the mothers who go hungry, so their children can eat.

For all the mothers who read "Goodnight, Moon" twice a night for a year. And then read it again. "Just one more time."

This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.

This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.

This is for every mother whose head turns automatically when a little voice calls "Mom?" in a crowd, even though they know their own offspring are at home -- or even away at college --or married -- or Moms themselves.

This is for all the mothers who sent their kids to school with stomach aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.

This is for mothers whose children have gone astray, who can't find the words to reach them.

For all the mothers who bite their lips until they bleed when their 14 year olds dye their hair green.

For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting. For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.

This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.

What makes a good Mother anyway?

Is it patience?

Compassion?

Broad hips?

The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?

Or is it in her heart?

Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time?

The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby?

Is it the panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home?

Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?

The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation...

And mature mothers learning to let go.

For working mothers and stay-at-home mothers.

Single mothers and married mothers..

Mothers with money, mothers without.

This is for you all.

For all of us.

Hang in there.

In the end we can only do the best we can.

Tell them every day that we love them.

And pray.

(I do not know the author weho composed this wonderful tribute. Please if anyone out there does... leave a comment so that we can give proper credit!)

#62 - Lupus Reading List

Here is a reading list (with links) of books about lupus from the New York Chapter of the Lupus Foundation:


LupusNY.org - Systemic Lupus Erythematosus Foundation

#61 - Lupus Camp for Kids : NYC Region

The Lupus Foundation, New York Chapter, offers an opportunity for children with lupus and children who have a parent with lupus to enjoy CAMP SUNSHINE.

The motto is "Let Kids Be Kids".

More information and applications are available here:

LupusNY.org - Helping Kids Live With Lupus

#60 - Lupus Zen Moment: Bloom Where You Are Planted

Here is my poor paraphrased rendition of a beautiful Zen story.

May the ancients forgive me for mangling it:

There once was a woman who was deeply stricken with grief.

Her son had died and she felt that her heart had been buried in the ground with him.

She sought release from her suffering.

She went to the great teacher and asked him for help.

He gave her a seed and the following task.

Go to the home of each of your neighbors and tell them the story of your deep sorrows.

When you come to the home that has never been touched by grief, leave the seed with them .

So the woman went door to door.

She told her neighbors her tale of grief, of how much she loved her son, and how broken her heart had become with his passing on.

And her neighbors invited her into their homes, sat her down, and then shared their stories of grief.

She never found a neighbor who could keep her seed.

She ended her quest and went home.

She planted the seed and watched it grow.

And her heart grew one thousand fold.

She had shared and she had listened.

She became enlightened.

#59 - A Big BooHoo and Clinical Trials

I am climbing the walls.

Well, I WOULD if I could.

I have been so sick for the past several days that it has gotten crazy making.

I usually can put up with things much better than I did when first diagnosed, but this latest bout of Mabels is making me screwy.

Today was so bad, I literally had to sit down plunk on the floor in front of Little Bear because I just could not move.

I couldn't stand, and I couldn't manage to walk, crawl, whatever into another room where he couldn't see me like that.

I shook and tremored all over the place because my body just decided to shut down for a moment... going "Enough pain for now...I'm done."

Thank God I didn't faint.

I have done that before when the pain gets intolerable.

Poor Little Bear.

Hubby stepped out of the house for an hour on an errand for me. He bought me an electric bicycle. He was thinking Vespa, but we both concur that with me as loopy as I have been... an electric bike might do the trick. I can't drive anymore and sometimes I can not even manage to walk to the market around the corner.

After feeding and medicating me, Hubby took Little Bear outside for some fresh air. He told me that Bear sat in the backyard blowing dandelion seeds wishing me well and that I would never need medicine again.

I'm trying Little Bear... I sure am trying.

After the meds knocked the worst of the lupus Mabel out... I sat with Little Bear and let him stay up later than usual so he could have some Mommy time. He is into race cars this weekend, so I watched him play Speed Racer and was grateful for that.

I do not recall if I ever mentioned this, but last year I had signed up for a clinical study using chemotherapy (big time) to beat lupus into submission. This treatment has been reported to put people into full remission for up to a year thus far.

I got through the paperwork and then the phone interview only to discover that I would not be a good candidate for this clinical trial because I am in that itty bitty 5% segment of systemic lupus patients who are ANA negative.

Don't know if it's really ANA negative... just never comes out that way when I get lab work done.
I have a positive skin biopsy, though... so that counts for something I guess.

Emily Cushing is the contact person for the above mentioned clinical trial. A VERY nice lady and so easy to deal with.

The testing is done out of the University of Rochester Medical Center.

Even though I pooped out as a good research candidate, I did ask Emily to keep me posted on other clinical trials to keep everyone here up to speed.

They are currently seeking candidates for THREE separate trials:

#1.
*Diagnosis of SLE per the American College of Rheumatology
* "Active" disease
* Patients must be taking immunosuppressive medication such as Cellcept, Imuran, or Methotrexate
* Patients must also be taking an antimalarial drug such as Hydroxychloroquine (plaquenil), chloroquine, or quinacrine.
* Renal disease and CNS lupus (ex: seizures or stroke) are excluded
* Chronic infection such as Hepatitis B/C or HIV is excluded
* Treatment with Cytotoxan within 3 months of screening is excluded

#2
*Disagnosis of SLE as per the American College of Rheumatology
* "Active" disease
* Renal Biopsy in the last 12 months
* Patients must be able to tolerate MMF (Cellcept)
* History of renal transplant excluded
* Chronic infection such as Hepatitis B/C or HIV is excluded
* Treatment with Cytotoxan within 3 months of screening is excluded

#3.
*Diagnosis of SLE as per the American College of Rheumatology
* Mild to Moderate disease activity (stable disease) (Lupus flares are excluded).
* Patients can not be on Cytoxan and prednisone dose cannot be greater than 10mg/day for 2 months before start of the study.
* Chronic infections such as Hepatitis B/C or HIV is excluded.
* Renal disease is excluded.

If these are of interest to you call Emily at (585) 275-7167 or e-mail her at:

Emily_Cushing@urmc.rochester.edu

In regards to my miserable status lately, I am going to my rheumy soon for a regular check-up. I go every three months. Hubby and I are going to talk to him about this new chemo infusion that has recently been made available. This is the treatment that I had been trying to get into clinical trials for... so we'll see if I am a good candidate, yet.

I have not been able to tolerate some of the "traditional" treatments, and I don't seem to be pulling up out of this nose dive that keeps on going and going.

I am participating in a genetic research study.

Some of my sisters and I have volunteered a blood draw for research purposes.
You can learn more about that study here:

Clinical Trial: Genetic Study of Lupus Patients and Their Families

Deciding to participate in any clinical research is something that should NEVER be taken lightly. There are risks, and it is definitely not for everyone.

My former career... good heavens! I am actually calling it former... well, social work professionals depend heavily on the results of clinical research. I know that's important and I feel like I am able to doing something pro-active to participate in looking for a lupus cure.

That's it.

The pain is raging through this body.

Writing gives me the respite from thinking only about pain.

Ladeeda... but, now I have nothing interesting to say!

LOL!

Have a Blessed weekend, folks!

:)

Loretta

P.S. I do have some background about researching so please feel free to leave comments with general questions. I'll do my best with that...okiedokie?

#58 - Personal Lupus Story from the BBC

Hearing someone else's experiences with lupus is a great way to help in learning how to cope.

Here is Yvonne's story:

BBC - Health - Awareness campaigns - Lupus Awareness Month: Yvonne's story

#57 - More Mabel News - Migraine Triggers

Isn't it interesting that when people talk about migraines they use the word "trigger".

Sort of like you have a loaded gun at your head and someone is going to let that bullet of pain go flying through your reality at any moment.

Here's an interesting article about Mabels...er... migraines.

And for all you fancy schmancy high tech folks... I believe you can podcast this thing too:

NPR : What's Triggering Your Migraine?

#56 - Feeding Mabel

Everything you wanted to know about how to feed a migraine, but were afraid to ask:


http://www.npr.org/programs/morning/features/2006/apr/migraine/triggers2.pdf

NOTE: To any new readers out there. I call my lupus migraine clusters Mabel. I am just weird that way.

:)

#55 - Financial Assistance for People with Limited Means

When my health crashed with the lupus, we entered a barren period of finances. We scraped by. We sold the second car, we cut our budget to the bare bones, and when that was not enough... we sold off heirlooms and my book collection.

There is a looong waiting period before social security disability comes through. Here in New York State my wait was about two years.

You make due.

We were lucky because we had something to fall back on.

Many people today do not.

In the United States... right now... 41% of the middle working class have no health insurance.

Modest Needs is an organization dedicated to helping people whom I call the hard working poor.

There have been countless times in my social work career when I have met up with good, decent, hard-working folks who are a hair's breadth away from poverty when a financial burden depletes their meager earnings.

This happens a lot with lupus too.

Learn more about Modest Needs here:

Modest Needs® - The Modest Needs® Mission

#54 - Helping People to Stay Connected in Crisis

Caring Bridge is an online service that offers free personalized websites to help people stay connected via the internet during significant life events.

Learn more here:


CaringBridge :: About

#53 - Random Lupus Thoughts on a Tuesday Afternoon

I parked myself in front of the picture window this morning.

UV lighting be damned.

The grass is perfect in our front lawn at the Cozy Cottage. Perfection the way I see it, not my neighbors.

Long tufts of Persephone's lush green with little dandelions poking through her tresses.

The yard is alive with the neighborhood nut gatherer, tail twitching as he digs around for last autumn's treasures. My cats perch on the back of the couch while I lean in with them watching the action.

I call our front window "cat t.v.".

They see a bird and simultaneously crouch and waggle their tails as they fantasize about leaping through the window and having a happy pounce.

I only see a starling. They see lunch.

Tomorrow the grass will be military trimmed to appease the suburban deities of the lawn.

We used to live on farm land. The first time in a renovated horse barn, the second rental was a huge nursery with a multi-million dollar horse farm view out our windows.

Grass is allowed to grow in the country.

Your neighbors would think you were crazy if you tried to beat those luscious green blades into submission.

Let the horses do the job, and the cows from the farm next door.

I miss that.

Here we have the beach, but we live on top of each other... and the "summer people" are noisily crashing into our quiet weekends already.

Would someone please tell them it's not Memorial Day, yet?

I don't know why you buy a summer cottage on the lake and then load up with noisy ski-dos, and four wheelers, and morotcycles... feh. That is hardly getting away from the bustle of everyday life.

I ramble.

And tomorrow our grass will be cut.

I hired someone to do that this year.

Hubby is exhausted. He works, works, works and then does another lion's share of helping with Little Bear and around the Cozy Cottage.

I figured the least I could do is let someone else cut the grass this season. Hubby can rest and our tidy neighbors will be appeased.

Darn, I am going to miss that beautiful green carpetting.

And today I finally, finally hired someone to come in to clean the Cozy Cottage.

It took me four months (or is it more?) to find her. Someone who is nice, flexible and didn't shirk at my requests.

I had to swallow bucketfuls of pride to get this help. I had a lump in my throat as I interviewed her. I didn't want to cry in front of this Godsend. She probably has no idea how grateful I am that she has walked into my life.

I had no problem with hiring someone to white tornado clean our digs when I was working full time in my career.

But, being home all the time... I think I SHOULD be able to do this.

I can't.

The past three years have proven that in spades.

I need to stop "shoulding" all over myself.

And I think I will have more energy to write, to be conscious in the evenings for the guys... the little things... the quality of life things that are sorely missing in my life most days.

I have ruined countless days by trying to drag a vacuum cleaner across the rug.

A fifteen minute chore that can go on for hours because I tire so easily.

And now I am thinking how lucky I am.

I can get help.

I know I have lupus, I am pretty sure I know the status quo of the lupus I live with... and I know I will wake up in my own bed tomorrow and the next day and the next.

Still sick, but still kicking.

And now I think of Val.

I don't think she even made it to 30.

That's the most frustrating thing with online relationships, we know each other in ways that we may never have come to know each other if the circumstances had been different.

But, there's so many missing pieces.

In an online community, especially amongst those of us bound together with a disease, news may move VERY slowly.

And so it has been with Val's death.

She went from a visit to the hospital (which is way too common with lupus); no one seeming to be aware that in five short days she would exist on this earth no more.

One out of four of us do not survive the first ten years after diagnosis.

I think for Val her youth may have been the curse. We don't always look sick, lupus is predominantly invisible. Some of our symptoms are silent time bombs that can blow with nary a warning.

That is what it is like to live with lupus. You try not to go crazy with the unpredictability of it all. Maybe you will live into old age, maybe you could get run over a by a truck, or maybe lupus will come calling and steal you away tomorrow.

I harbor some guilt.

I think, well if I had kept up with her via e-mail, maybe I could have recognized that her lupus was the life threatening kind?

Then again... I probably would not have.

I don't know... it just feels so sad to have known someone casually and to find out they are gone. You feel like asking yourself, "Was there something I was supposed to do, but failed to?"


We didn't have a lot in common.

She was supportive, she was very kind, but , there is a generation gap that lay between us... so the correspondence fizzled the way a typical online relationship may as you get to know each other and sort out who you want to devote your time to.

And I thought nothing of hearing from her no more, thinking she is finding what she needs elsewhere.

We have lupus support message boards available online, but I found that I could not keep up.

It is that all or nothing personality of mine that works hard at some serious crazy making.

If I can't give it my 100%, then I feel like I may leave someone out, or let someone down because I am too sick to keep up with everyone.

Is that the truth or cowardice?

I don't have any answeres today.

I feel Val's loss, but I can not express the how of it.

I feel deep in my heart so sad for her parents.

I can pray, and I am doing that.

But, this... this ending of such a young life just feels...

I don't know...

I have no words for this.

So I watch the grass grow before it gets cut down tomorrow.

And I soak in today with as much gratitude as I can muster.

Because that is all I can think of to do.

In Memorium: Val (Valry24@aol)

Very sad news today. One of the younger members of our online lupus community passed on.

Here is the letter from her father:

To all Vals Pals on aol message board.

I am Valarie's father and while clearing out all kinds of un-subscribed e-mails that still keep coming I noticed one from Missysworld. Now that I know where you all are I needed to come here and tell you that Valarie lost her 4 1/2 year battle with Lupus on Monday April 10, 2006, around 8:15 that evening.

Her passing, came about very unexpectedly after a mere five day stay in the hospital. Doctors were discussing her good lab reports and positive response to treatment with hopes of discharge on Mon or Tues. On Sunday she appeared to go into some type of pulmonary distress and cardiac arrest. After she was revived in her room during a Code Blue, she was taken to Intensive Care until she could no longer fight the good fight and her lungs and heart gave out approx 24 hours later. We laid her to final peaceful rest on Saturday, April 15, 2006, in the same section of the cemetery as her sister. They are together once again. May God bless you all and give you all the strength and healing power you need to live as normal a life as you can. I hope for you all that your medical professiopnals are up to date with all the latest findings and treatments that you will need to survive. Valarie's doctor's I'm affraid were not up to speed and missed numerous red flags that should have signaled new and aggressive treatment. As schooled as she was about her disease, her doctor's were not. We are waiting for the autopsy report to see just what happened. I, with Vals knowledge to educate me, belive it was Lupus Nephritis. But we don't know right now. Valarie found a medical paper online about SLE and Lupus Nephritis. I'm sure she would have passed it on if she had had enough time left to do so. In an e-mail to Missy I attached a copy, hopefully if you are interested she will pass it along to you all. Thanks for being there for my darling daughter and giving her support during her suffering. Again God Bless you all.............Joseph H.

'Survivors are part turtle, we are part potato bug, we know enough to go fetal, 'til it's still up above'--Ani DiFranco--