WAR and PEACE ....hmmm it is a rather loooong flick...

    Sooo... WAR and PEACE is a rather looooong movie. Three hours long. So I can't blow the plot for you... because I didn't get to watch all of it.

     Deep into the movie, I get a phone call from one of my sisters... she wanted to stop in for a quick visit. She shows up with a huge carved pumpkin made by another one of my sisters and herself!!!
     Yeah! Now we can spare Little Bear's pumpkin family from the knife.


     (SEE PHOTO ABOVE: The wolf carved pumpkin is by Joan and Peg, and then there is Bear's pumpkin family: Daddy Pumpkin, Mommy Pumpkin, Baby Pumpkin, and Rosie the Pumpkin)
 
     So we chitterchattered for a bit. And so no more War and Peace.
     Went to see the doctor... 
actually I saw one of his PA's... 
my doctor is in the Reserves.
      Toe infection will be okie-dokie, but I will have to have some tests for gastroenterologial junk.
     Phooey.
     Finished Little Bear's Pumpkin costume, and that's it for today.

  Unfortunately, when AOL transferred this journal to Blogger, all of the terrific photos were deleted. :(

WAR and PEACE part 2

     Okay... I am about 40 minutes into this flick and FINALLY someone actually is "doing" a Russian accent.
     I feel like I am watching a study in monotones. You know a bunch of actors playing "being serious" as they act out a significant piece of literature.
     Poor Henry Fonda is so constricted in this role that he might as well be wearing a straight jacket.
    Audrey Hepburn bounces in for another scene, and the pace picks up significantly only to be dragged down again by the battle scene.
    Yes... the battle scene... where the "good guys" slowly march in front of the enemy line and drop without fighting back... well... at least that is how it looks.
     Yes, well.... back to the movie.
     Time for a coffee refill.... this movie can' t get worse... can it?

War and Peace

     Resting up today and waiting to go  say "Hiya!" to my doctor a bit later.
      While I am sitting here "resting" I decided to watch War and Peace on cable. This should be an interesting study in miscasting very talented actors. Henry Fonda with his broad flat American accent is playing a French guy named "Pierre"...hmmmmm. 
He surprisingly is very George Clooney-esque with his hair brushed ala Caesar and his young man handsome looks.
       Beautiful Audrey Hepburn is bouncing around in a yellow frock too big for her thin frame, a short haired ponytail completely out of style with the period of history this story is supposed to be in...
      and.... I have a feeling this will degenerate from there.
      Oh well.... this should be interesting....
    Oh goody... they are having a Russian dance scene...
    GOTTA GO!

Project Pumpkin

Not doing very good at all today... so this is a lupus quickie entry.
Been spending more and more time in bed due to really bad fatigue. Pain is going off the Reichter scale this morning. Low grade fever, infected toe and mouth ulcers. 
My stomach has jumped ship... I have been living on toast and froot loops for the past three days.
It's probably time to call the doctor, but here's the rub...
I get WORSE just for having to go in for an office visit.
First of all, I am too sick to tolerate the car ride. Then I have to sit in a flourescent lit waiting room and then treatment room. (Flourescents make me ill). PLUS I will be sitting around with other folks who are sick... remember my immune system is suppressed from the Imuran. 
Then there is the poking and prodding, speculating, and finally blaming whatever on the lupus...
 and sending me off with a prescription for yet another new chemical to dump into this tired body.
bleh....


Yeah..
.well...
 now that I am done ranting...
My BIG GOAL today is to start on Little Bear's Halloween costume. I have to say that I am sooo relieved that little guy wants to be a pumpkin for Halloween.
He LOVES pumpkins...
 we have four of various sizes parked on our dining room table right now. Can't have too many pumpkins.
Little Bear has named all of the pumpkins. They are a family and now they "eat" meals with us.
I don't have the heart to carve them up.
I can still recall when Bear was a toddler... 
I was making Iron Chef dolls for him (Food Network cooking show). 
I designed the dolls myself and was sewing them using plastic canvas. Well, I made the mistake of letting Little Bear see me sewing together the feet of one doll. He got so upset he grabbed the doll away from me. He thought I was giving the doll a boo-boo toe by sewing the edges around the feet. The doll is still unfinished to this day.
Yes, my kid is sensitive that way... 
I love that about him.
So, as you can see pumpkin carving is probably really out of the question. It would be like carving up my kid's favorite doll... 
he is so attached to these pumpkins.
I am speculating how we are going to help him deal with the fact that they will decay?
Interesting lesson ahead for us all.
In the meantime....
 I am going to rest for a while and hope that the pain medication cuts me a window of opportunity to start on that costume.

Clinical Trial

 I contacted one of the research centers from the news.
      Guess what?
      I am going to be on the waiting list for upcoming clinical trials for lupus.


        The University of Rochester Medical Center has had success treating systemic lupus with cancer medication. Here is the press release.
---------------------------------------          
Cancer Drug Shows Promise Against Lupus

A drug now used to treat a type of cancer appears to be very effective at treating lupus, with just one injection easing symptoms in several patients for a year or more. The results of the clinical trial involving 17 patients are in the August issue of Arthritis and Rheumatism. READ THE FULL ARTICLE HERE: http://www.stronghealth.com/news/article.cfm?art_ID=625
---------------------------------------------------
The University of Rochester is recruiting lupus patients for future clinical trials. If you think you may be interested in this you may contact:
Emily Cushing, Lupus Coordinator, University of Rochester 585-275-7167
email: emily_cushing@urmc.rochester.edu
There is no cost to you and you get to decide what studies you want to participate in. All information is kept confidential.

Short Update

Just a brief update today.
Sleeping a lot again, running a fever, mouth ulcers are back, and nausea is back big time.
Ain't lupus fun?
Nah... 
really this is no big deal, but I do need to rest today before a little nuisance becomes a big problem. That is the way it is with lupus.
We don't just get a cold...
 we have to do it up big time and get BIGGER things like pneumonia. 
We don't just get a tension headache...
 we get exploding bombs in our heads that require emergency room intervention when the pain becomes more than we can bare. 
We don't just get a little tired from a stressful week... 
we break out in sores, have our hair start falling out, and sometimes wind up in the hospital after a bad spell... or get pumped up with steroids before our major organs blowout.


You know... 
I am ashamed to admit this... 
but, even though I have a sibling with lupus... 
I NEVER would have even come close to comprehending how complicated this life with lupus can be until I wound up with this myself.


I am so sorry, sis. I never really understood how hard this has been for you.


You really do have to walk a mile in someone's moccasins to begin to understand what they are all about.
And now I really have to "crash".
Where did I put the soup and crackers?
Oh...
yeah...
 that's right...
that stuff is in the kitchen.


Brain fog donchaknow.

How do you measure a life?

Four Hundred and Eighty Seven days have passed since I received a confirmed diagnosis of lupus. Eleven thousand six hundred and eighty-eight hours. Seven hundred and one thousand two hundred and eighty minutes. Forty two million seventy six thousand and eight hundred seconds.

One would think by now that I would have grown accustomed to this lupus thing.

I haven’t.

If this were a Hollywood movie I would reign victorious over this lupus. I would go into full remission and resume my old life, more empathetic, more appreciative... but, I would be guaranteed a happy ending.

Well, I have news for you, folks.

There is no script to life.

We live it day to day, hour to hour, minute to minute, second to second.

And when I think about the time I have already wasted feeling sorry for myself... 


well... 


I feel ashamed.

I have been wasting a lot of time.

That's what made me start counting in the first place. I mean how much time are we guaranteed in life?

There are no guarantees.

Life is short.

Life is fragile.

I best get moving on living this life with lupus...
 and I really need to start doing this with a lot more awareness.

The clock has not frozen...
only me while I struggle with the used to be's, and the I can no longers, and the when will I feel betters.

I have been splurging my time like a millionaire.

Time to start getting frugal with my life and making sure that what I am doing each moment is really meaningful.

There was an Oprah show that asked everyone what do you want on your tombstone?

This was not meant to be morbid.

The exercise is to make you aware of where you are going in your life, and are you really doing what you are called todo.

Funny thing is... 
long before Oprah was doing the Oprah thing... 
I decided at the age of 19 on the shores of the very same water I still live by that I have one great goal to fulfill.

I want my epitaph to read:

She loved and she was loved.

What would yours be?

TODAY: November 2011

During those first years after being diagnosed with lupus, I was seriously worried about my life span being shortened by the disease. 

I had lost four really close friends in the span of two years in the 1990's. All of them died from cancer and died young. And I was walking the journey with my best friend as she was living her last year of life battling ovarian cancer.

 So I was very concerned about getting my life in order and not wasting my time.

I was also seriously worried about the burdens on my husband and son. First of living with me being as sick as I had been, and then worried about what could happen to them if I died before my son reached a maturity in which he could cope.

That epitaph has always kept me focused. 

Every day I fail at it, but I recite it anyway and keep on trying.

Lupus Survival

      Today I am providing you with the FACTs that most of us with lupus worry about on a very regular basis. Lupus used to be considered a "death sentence" because the prognosis was so dismal.
       The survival rate for systemic lupus has greatly improved over the past two decades. 
      What statistics fail to reveal is the quality of life issues that people with lupus must face.
      No matter what the level of severity of the disease... you brush up against mortality much sooner than most folks. And you really can not start thinking about your death in a very real concrete way without being changed.
      Here is something you may not be aware of. The systemic lupus that I am living with is considered mild. Yes, M-I-L-D. But, as you may have noticed... it is disabling.
      WHY?
      "Mild" systemic lupus simply means that my major organ systems are not under attack... thank God! "Mild" is not a reflection of the actual toll that lupus can take on someone's life. I have lupus in combination with several other health problems that makes my situation a bit more complicated than "mild" systemic lupus.
       Yes, I do know people with lupus who work. What the statistics fail to show is that (at least with the people I know)... work is about the only thing a lupus patient is able to do... there is no energy for anything more...like FAMILY, SOCIAL LIFE, RECREATION, TENDING TO YOUR HOME, HOBBIES... quality of life issues.
      So many people with lupus who push and push to work... suffer greatly.
      Some people with lupus are able to find the balance by maintaining part-time employment... but, once again with lupus being so unpredictable, it makes it really hard to be consistent the way a job requires one to be.
       I had to stop working when the lupus effected my ability to concentrate, think clearly, multi-task, and ...drive a car. I got in a car accident driving home (exhausted as usual) from work one day. I was in several near misses and actually was pulled off the road twice by concerned drivers who informed me my driving stunk.
      Thank you so much lupus.
       And I will stop here for now, so you can read the prognosis stuff. I just had to throw my two cents in before we hit the numbers.  

Prognosis of Lupus
About prognosis: The 'prognosis' of Lupus usually refers to the likely outcome of Lupus. The prognosis of Lupus may include the duration of Lupus, chances of complications of Lupus, probable outcomes, prospects for recovery, recovery period for Lupus, survival rates, death rates, and other outcome possibilities in the overall prognosis of Lupus. Naturally, such forecast issues are by their nature unpredictable.
Prognosis of Lupus: Normal lifespan possible for many patients. Remissions and relapses common. 5-year survival about 97%; 10-year survival about 90%. (NWHIC).
Prognosis for Lupus: The prognosis for lupus varies widely depending on the organs involved and the intensity of the inflammatory reaction. The course of lupus is commonly chronic and relapsing, often with long periods of remission. Most patients with lupus have a normal lifespan with periodic doctor visits and treatments with various drugs. Many of the more serious problems do not affect most patients. Death is usually caused by renal failure or infection. 1 ... The good news is that with the correct medicine and by taking care of themselves, most lupus patients can hold jobs, have children, and lead full lives.
5-year survival rate for Lupus: It is estimated that 97 percent of individuals with SLE live at least five years
10-year survival rate for Lupus: 90 percent live at least 10 years after diagnosis
Complications: see complications of Lupus 1

Complications of Lupus
About complications: Complications of Lupus are secondary conditions, symptoms, or other disorders that are caused by Lupus. In many cases the distinction between symptoms of Lupus and complications of Lupus is unclear or arbitrary.
Complications list for Lupus: The list of complications that have been mentioned in various sources for Lupus includes:

• Lupus nephritis
  
• Arthritis
  
• Peripheral neuropathy
  
• Sensory neuropathy (see Tingling)
  
• Psychological problems
  
• Paranoia
  
• Mania
  
• Schizophrenia
  
• Seizures
  
• Transverse myelitis
  
• Paralysis
  
• Stroke
  
• Raynaud's phenomenon
  
• Pleuritis (inflammation of the lining of the chest cavity)
  
• Pleurisy
  
• Pulmonary hypertension
  
• Pericarditis
  
• Glomerulonephritis
  
• Vasculitis
  
• Leukopenia
  
• Thrombocytopenia
  
• Myocarditis
  
• Endocarditis
  
• Pericarditis
  
• Blood clots (see Clotting symptoms)
  
• Anemia
  
• Hemolytic anemia (type of Anemia)
  
• Pregnancy complications of lupus (see Pregnancy symptoms) - lupus pregnancies are considered high risk. Although lupus does not usually lead to any significant birth defect, there are various risks and complications for mother and child.
  • Miscarriages - about 20-25% of lupus pregnancies miscarry compared with 10-15% normally.
    
  • Prematurity - about 25% of lupus pregnancies deliver prematurely but not usually with any birth defects.
    
  • Neonatal lupus - a baby of a mother with lupus; rarely occurs.
    
  • Increased risk of mother pregnancy complications (see Pregnancy symptoms)
    • High blood pressure
      
    • Gestational diabetes
      
    • Hyperglycemia (high blood sugar) (see Diabetes-like symptoms)
      
    • Kidney complications (see Kidney symptoms)

Complications of Lupus: The following systems in the body also can be affected by lupus.

• Kidneys: Inflammation of the kidneys (nephritis) can impair their ability to get rid of waste products and other toxins from the body effectively. Because the kidneys are so important to overall health, lupus affecting the kidneys generally requires intensive drug treatment to prevent permanent damage. There is usually no pain associated with kidney involvement, although some patients may notice that their ankles swell. Most often the only indication of kidney disease is an abnormal urine or blood test.

• Lungs: Some people with lupus develop pleuritis, an inflammation of the lining of the chest cavity that causes chest pain, particularly with breathing. Patients with lupus also may get pneumonia.

• Central nervous system: In some patients, lupus affects the brain or central nervous system. This can cause headaches, dizziness, memory disturbances, vision problems, stroke, or changes in behavior.

• Blood vessels: Blood vessels may become inflamed (vasculitis), affecting the way blood circulates through the body. The inflammation may be mild and may not require treatment or may be severe and require immediate attention.

• Blood: People with lupus may develop anemia, leukopenia (a decreased number of white blood cells), or a decrease in the number of platelets (thrombocytopenia). Some people with lupus may have abnormalities that cause an increased risk for blood clots.

• Heart: In some people with lupus, inflammation can occur in the heart itself (myocarditis and endocarditis) or the membrane that surrounds it (pericarditis), causing chest pains or other symptoms. Lupus can also increase the risk of atherosclerosis. 2 

TODAY: November 2011

I was reading through more updated prognosis statistics last night on the internet.

 Since I posted this entry in 2004, the rate of deaths from lupus have increased in the African American population in the U.S.

The 20 year survival rate for lupus patients is 80%.

And as for myself, I now have moderate to severe lupus. The lupus has attacked my lungs, blood, and central nervous system. 

________________________________________________
FOOTNOTES
1.  http://www.wrongdiagnosis.com/l/lupus/prognosis.htm
2. http://www.wrongdiagnosis.com/l/lupus/complic.htm

Taking the Day Off

       Hey!
       Guess what?
       It is still LUPUS AWARENESS MONTH!
         But... you wanna know what?
         I need a day off.
         Tired of lupus today (not that I ever have enjoyed it...lol).
        I am having trouble tolerating my medications again. Lots of nausea and stomach troubles with insomnia.
       Feh.
      So I took a break today. Spent most of the day in bed.
      Finally stored up enough spoons to walk out into the cool crisp autumn air, And that was perfect.
        And I was able to forget for 20 minutes that I have lupus. I want to stretch that out some more.
      So Good-night everyone!
       I am off to relax and forget about lupus for the rest of the night.

Lupus and Vaccines

Today is going to be blood test Saturday.               
                                  
Whoopee!
Bloodwork is one of the many fun activities someone with lupus can do on a pretty regular basis. I actually had Buffy the Vampire Slayer at my front door this morning ... 
a tad confused by the tubes and vials of blood that I have been surrendering up to the great phlebotomist powers that be.


Okay...
lame joke... 
sorry.

Actually, I don't mind going for labwork again this morning. I have to go into town because the other labs are closed. I have been cooped up this week and in spite of the fatigue factor... 
I need an outing.


I have to be tested to see if I have ever had chickenpox.
I came from a huge family and my very elderly mom can't remember if I ever had the chickenpox.
And why is this important?
Well, here is the scoop.
I get a call last week from the School Nurse. Little Bear is missing a vaccination for the chickenpox. He has to have this in order to stay in school.
So Hubby takes Little Bear this past Wednesday evening for the shot. 
Nope... no can do. 
Why?
Because Mommy has a suppressed immune system (thanks to the Imuran). Chickenpox is a "live" vaccine. No one is sure if Mommy has any defenses against the very slim possibility of picking up the chicken pox from Bear.
So...
I will go in today to have this bloodwork done to see if I have any immunity for the chicken pox. If not, I am going to have to practice special precautions with my little boy for 10 days.


Isn't lupus fun?


You know what bothers me the most about this?
That my little boy has to WAIT to get the things he needs to be healthy.


All because of me.


That is one of the things I struggle with regularly with having lupus.
And, please do not interpret this as complaining...
I am just stating the facts of my family's existence since lupus has moved in to our little family.
While we were waiting for Little Bear's adoption 
(a 9 month process...uncanny isn't it?)...
like any mother, I had all these fantasies about stuff I would be doing with my precious little boy.
Long days playing at the beach, picnics in the sun, playing all day long at our town park, long stroller walks through the neighborhood, and road trips all over the country to visit family and share our joy.


Letting go of the fantasies and embracing what is reality is a daily exercise.
But, I don't see that as any different than any other parent.
We imagine our life with our babies, and as our child's personality blossoms, and as the roller coaster of life takes us for a ride every parent has to learn to surrender in order to give our children the space to grow.


I learn to change the way we talk about plans.


For example, we had been talking about going to the movies in the village last night.
I told Bear "If Mommy is up to an outing this Friday, we will go to the movie. But, Bear, if not Friday...we will go sometime this weekend."


I could not get to the movies last night. After my last entry and a bit of e-mail correspondence I slept most of the day.
Not lazy... just the fatigue warning that comes before a flare.
Doctor told me to REST when I get like this.
Bear has some friends gathering today for playtime at the park. I would love to go, but with going to the lab this morning and hoping to save up enough energy for the movies...
Hubby is going to be the kiddy escort.


You learn to delegate your old responsibilities.
You learn how to create a support network.
We have been really fortunate to have reliable and loving neighbors. The older kids next door and their mom are always eager to help us with Little Bear.
They come over and entertain him on days when I am fatigued really bad. They have already offered to drive me anywhere if I am stuck for a ride. They are working on baking me a cake this weekend...which choked me up when I first found out about this little plan.


I never expected help like this from the neighborhood... 
I really didn't...
 but, that is where a tremendous amount of our support is coming from.
 And now that Little Bear is in a small Catholic school... I get a call from his teacher the other day. We talk and she lets me know that if Little Bear needs to stay home with me on a school day "just because" that the school has no problem whatsoever with that. Sometimes Bear gets anxious  and justs needs to stay home and be reassured that Mommy is there for him no matter what.


 And they already are doing what they can as a  community to watch over Little Bear and make him feel welcome.


Bear comes home everyday informing me he has 12 NEW friends! (his classmates).


Now getting back to the vaccines. The only reason I even brought up the topic is because these are the little things that people without lupus are probably completely unaware of. The health of my family members has direct impact on my health status... just as my health status impacts every corner of our family life.
The task I am working hard at right now is to make sure that the lupus doesn't interfere and that life can be as normal as possible for my guys.


I know that I am very blessed that Hubby and I are able to talk very openly. We have a strong emotionally intimate relationship... so we can talk about what adjustments need to be made to accommodate.
Right now we are puzzling over a way to get a dishwasher that will fit into out tiny kitchen (more like a kitchenette).Dishes are a real chore around here because I can't hold my hands for long at the angle required to wash. And Hubby works so darn hard all the time... I absolutely can not stand seeing him washing dishes. A dishwasher would empower me by helping me feel better about keeping the Cottage cozy and I would feel better knowing that Hubby isn't doing the dishes. And, of course, this would relieve Hubby from an extra chore.


I know from hearing from so many with lupus, that Hubby and I are living in the exceptional situation. I know that.


And I wonder how to help those with lupus who are having such a hard time communicating with family. I also know that some people with lupus suffer terrible rejection from their family members who refuse to accept that the lupus is real. (Denial is the first stage of grief.)


That is where building up a support network is imperative to emotional survival. 
Some people find their support outside the family... and that is just reality.


Here is a place to visit to be able to share with others who know what you are going through:


 General Discussion SEE POSTSCIPT BELOW!

This is the AOL LUPUS Message Board.

I would stongly urge those of you who feel like you have been exiled to a desert island... 
PLEASE SEEK HELP!
You never need to suffer alone.
Isolation feeds the depression and anxiety that accompany lupus.
There are several options...
 you have to find what will work for you. LICENSED qualified counselors can help you find the resources you need and build up your emotional strengths.
A support group will help you make new friendships with people who are really walking the journey with you.
Many people find support in their church communities, and I know some do not.
Some kind of community connection can help.
If you are really stuck... 
call your rheumatologist's office (or whichever specialist you are using) and ask them what is available.
And, of course, you can try the AOL Lupus Support network. This is where I have found a lot of support.
Don't forget that as you find the support you need, you will find intense emotional healing when you begin to be able to give back.
Those of you who have contacted me probably do not realize what a GIFT you are giving when you invite me to offer support to you.
I thank you for that.

And now I better get going here.
I have an appointment with Count Dracula.


POSTSCRIPT: November 2011: AOL eventually shut down its support board. We now have an online presence at Facebook. Please join us! You can find us all here:


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.

The Day After

 I was going through some of my old writings and found this little gem buried in a personal journal. I had completely forgotten about this. Here is my writing the day after I was diagnosed with Systemic Lupus:


Day #1 – June 24, 2003

Yesterday my rheumatologist called.

I have systemic lupus. I start on an anti-malrial drug this morning called Plaquenil.

I think…
I should be freaking out…
I should be railing and screaming…
asking WHY ME?

But, I don’t do that.

I ask God…
what do You want me to do with this?

What is next?

What am I supposed to learn from this?

And that is where I will start with this Lupus.

The Plaquenil makes me nauseous. The abdominal cramping started an hour after taking the first dose. I sent Little Bear to day care. He doesn’t need to spend the day cooped up in the house with a sick woman hiding in the bathroom.

I call Hubby after he’s only been at work for 5 minutes. How desperate is that?

 I neglect to give him the respite he needs.
 Imagine that…
my husband needing a break from dealing with me…
but, that will have to be my gift to him. 
He’s shouldering more and more everyday.

I need to help lighten his load.

Tonight I’ll make dinner. Tonight, I’ll try hard to do the dishes. I’ll try to play a game with him, or listen or laugh at a video…
it’s so draining. It’s hard with a headache that has already taken on a life of its own.

The headache is the worst.

It rakes through my eyes and stiffens the back of my neck. It screams when I move. It hates the light.

But, it loves the cookies and soup that I fed it.

I spend an hour online writing to others living in the lupus wilderness. I give what I can. I have to stop after an hour…
not enough of me to go around.

I write a list of all those on the board asking for advice, a shoulder to cry on. I pray. And that is what I will continue to do. 
I have their suffering…
I am living it with them…
and I will pray.

And that is where I was at one year, three and a half months ago. 
I stopped writing for a few months. I got silent. I got sad. I had left behind a really promising career, and I was shedding all the layers of my public face... 
layers that had overnight become meaningless.
 I was raw...
wounded...
and so very frightened.
 I lost people in my life at that time who were afraid of my illness, or were just fed up with me because I was changing. I lost people who had no time or patience to walk through the pain with me.


For those of you who are newly diagnosed here is a bit of advice:


Those who greive well, live well.
Give yourself permission to grieve.


Receiving a confirmed diagnosis is like experiencing a death without a funeral.
You have to let go of your old self, and you have to let go of a future that you were certain was going to be yours.


But, that does not mean life is over.


I feel in so many ways, living with lupus has cracked a hard shell I was living in.
 And I feel that my life now is crisper, cleaner, more real than ever before.
I grieved hard, really hard... read my old entries and you can see that. I chose to share the pain in a public way. I felt the urge to find a new voice.


I am sitting here right now with a basket full of pill bottles, all the meds I have to take every morning. I really am in no mood to swallow those pills that keep my body functioning. I have a nasty headache, earache, and neck pain already...
I am really, really tired.


But, you know what?
I am happy.


Yes, I am truly happy.


I love this life.
 I love my family.
I love my friends.
 I love my little messy needing repairs Cozy Cottage.
 I love each day.
I learned this love by meeting so many, many others with lupus.


I think of beautiful friends with lupus and cancer who are hospitalized, who are bed ridden, desperately, life threatening ill... yet, these gentle, loving people  in spite of so much illness  still find the time and energy to drop me a line, send a greeting, offer their heart in friendship.


And I am so humbled.
There is just so much more to do.
I have yet, to even begin to scratch the surface of learning the lessons that lupus has to offer.
It is an exciting journey. A journey that twists and turns full of surprises.
Miracles happen everyday.
And angels walk the earth hiding behind the faces of people we may know.


This is what lupus is teaching me.

HAPPY

 I am feeling happy today. 

     The autumn weather is taking hold here and we get some of the most beautiful foliage during this season. I have been sneaking outside early in the morning with Little Bear before the sun gets intense. I soak up the fresh air and shiver and watch Bear draw pictures on our car with the morning dew.

  

      And that makes me happy.

     Working on plans to make Bear’s Halloween costume. He wants to be a pumpkin. My friend, Ellen, sent some incredible cheap and cheerful ideas for making a super-duper deluxe costume.

    Ellen is a very talented artist, so her design ideas are really unique. I bet Bear is going to be thrilled when we start working on this in the next week or so.

    I did not forget LUPUS AWARENESS MONTH… by the way. ;)

    Here is another feature journal. Today let me introduce Mariann and her journal:

     MARIANN ON LUPUS AND LIFE

http://journals.aol.com/edandmariann/MariannOnLupusandLife/

    Mariann is quite ill right now, so she does not submit entries regularly. She is struggling with lupus, and moany other health complications. She was just diagnosed a few days ago with diabetes.

   For those of you who are wheelchairbound and fighting an uphill battle with health crises … I think you will find Mariann’s journal very interesting.

    LuAnne is home again from the hospital! YEAH!

    Please keep Mariann in your prayers as she learns to cope with this recent health setback. And, as always, keep my pal, Ellen in your prayers, as she continues to battle the cancer.

    Have a Blessed day, Everyone.

Postscript October 2011: Unfortunately AOL deleted all of its blogs (then called journals) after transferring writers to Blogger. Unfortunately,  a wealth of links to other lupus patients was lost in the process.

Because I Love You So Much...

     The Cozy Cottage is quiet right now. Hubby is at work, and Little Bear is at his new school.
     I am missing Little Bear this morning. I miss the long days of just Bear and me hanging out together in the Cottage. Watching Barney, making up silly songs, throwing birthday parties because somebody somewhere in the world must be having a birthday today.
      I miss the adventures, packing his little backpack with an apple and a cookie, a map, a hat... and then watching Bear ride on his choo-choo train through our little house....pretending to be on a great trip far away. But, never too far from Mommy's arms.
     Now Little Bear is on a big adventure in the real world. No choo-choo, no map, just a lunchbox filled lovingly with his best favorite foods so he knows that Mommy loves him.
     After getting Bear shuttled onto the bus this morning, and waiting for the cup of coffee to bring me awake...I opened my pie safe that I keep by the computer.
     The pie safe is handmade by Hubby. This is where I shove all the bills, and assorted paper stuff that just seems to accumulate faster than I can keep up with it.
     I opened the pie safe, I know I was looking for something, but I completely forgot as a huge pile of little index cards came tumbling out of the shelf and onto the floor.
    I picked up all the little cards, and written carefully  in purple were the words "i owe you". Purple is my favorite color... Little Bear knows that.
     My son had stashed a bunch of "IOU" notes into my pie shelf.
      He knows that this pie shelf is where all my important papers go. So I know that these little cards of purple print written so carefully and placed in Mommy's special paper place are a precious gift from Bear. 
     And I think to myself...No, Little Bear, you don't owe me anything.  But, Baby, I owe you so much.
     Little Bear you are the promise that life is full of goodness. You are the laughter in our home, you are the sunshine, you are the joy. You remind me to be the best I can be, you make our family complete. You make rain when you are sad, you make the storm clouds when you are angry and you are the sweet breeze and the fresh cool wind when the smile returns to your beautiful face. You are my heart's dream for the future.
Little Bear it is Mommy who owes you:
IOU my 1000% best
IOU loving words that nestle happily in your heart
IOU the best example of what an adult is supposed to be
IOU my eternal gratitude, you are God's precious gift
IOU a profound respect  and deep compassion for your birthfamily and your ancestors
IOU good spiritual soil that is rich and nourishing so that you can grow roots that will hold you steady when life's storms come your way
IOU a safe harbor to come to whenever you feel afraid
IOU loving affection, sincerity, consistency, fairness, truth
IOU wings so you can fly
IOU an innocent childhood that is not filled up with junk that pours out of the tv
IOU my wisdom
IOU the freedom to learn from your mistakes
IOU the space to let you be yourself
IOU all the important lessons that you won't find in school
Little Bear, IOU more than you could ever know.
Why?

Because I LOVE YOU SO MUCH too, Little Bear... I love you so very, very much.

Karyl's Glimpses

Good morning, everyone and WELCOME TO DAY #5 of LUPUS AWARENESS MONTH!!!
Yippee!
Whoopee!
Copious Horn Tooting!
It is freezing cold here at the Cozy Cottage this morning...so I am dancing around tooting horns, jumping up and down, and clapping my hands to bring the circulation back.
What?!
You thought all that Hooraying Yippee stuff was for Lupus Awareness Month?
No, man....I AM COLD!!!!!!
;)
Today I want to introduce a new journal just started by my dear friend and mentor, Karyl.
KARYL'S GLIMPSES - LIFE WITH LUPUS
http://journals.aol.com/klconard1/GlimpsesofEternity/
Please stop by today and take a look. Karyl has kindly decided to share her essays and challenges with living with autoimmune disease.
THANK YOU, KARYL!
I hope by now you are learning that the face of lupus is just as unique as each individual. When you begin to know people's hearts and minds, you begin to learn that lupus is not a label for a disease. Lupus is a mountain that each of us has to climb. A mountain not of our choosing.
The greatest gift that lupus has given me are the friendships that have blossomed from people who heard my call in my time of need.
As I enter into this second year of living with lupus, I pray every day for God to give me the grace to hear others calls and respond in kind... to give back seven-fold all the precious compassion that has been given to me.

A Brief Update

Just wanted to share with those of you who have been visiting regularly that we transferred Little Bear to a small Catholic school in our neighborhood.

He started Catholic school this morning, and we feel very happy about this. There are other adoptees in his new class, and children who look like him. Bear seemed to fit right in. His new teacher is a musician and sings a lot...he'll love that. 



Health status:
 I have had three weeks plus now of migraine headaches. 
After we get Bear settled in with the new school, I will be making an appointment to be re-evaluated by my neurologist. Hopefully, the pain is just from the stress from routine changes at home and constant changes in the weather.
I continue on Imuran at the lowest dose. I have not built up enough tolerance to this treatment to up the dose. I have to go to the rheumy every 8 weeks.
Please continue praying that this treatment will knock me into full remission. Please let me know if any of you need special prayers. I will gladly add you to my prayer list.
I continue to fight fatigue which for many people with lupus can be one of the most disabling symptoms. Fatigue runs much deeper than something that can be "fixed" with enough sleep. Fatigue interferes with every corner of daily living and thought processes.

PRAYERS NEEDED: My friend E. is going through a terrible time right now. Her body has started rejecting the chemo. Please say prayers for her. Here is a link to E's blog: cancergrrl http://www.cancergrrl.blogspot.com/

LUPIE - Learning to be more sensitive to others' needs

Good morning Everyone!
HAPPY LUPUS AWARENESS MONTH!
Just a short note today.
I received some correspondence from some readers who are concerned about the use of the word "lupie".
I had not thought about the impact of that term on people who may feel that I am minimizing their suffering.
I would never do such intentionally and I sincerely apologize to anyone who felt hurt by that word.
The term "lupie" is a word used by many in my lupus support network as a sign of friendship and camaraderie. So I was using the term as a sign of friendliness and acceptance.
That being said, I will make every effort to be sensitive to the reading audience here.
I will be re-working all journal entries so that the writing more accurately reflects the seriousness of the topic.
Don't worry...
my sense of humor won't vanish! 
 I can only be myself.