Sunday, November 27, 2005

Pretty Good Day

Wow, YIPPEE!  I woke up feeling pretty good this morning.  Actually, I was up early and took my meds and went back to bed.  When I got up at 10:30 am I felt pretty good.  My fatigue level dropped substantially.  I still hurt but the prednisione and percocette are taking care of this.  I'm not going to go do anything stupid like move furniture or even clean anything today.  I'm going to take advantage of this but I'm still going to take it easy.

Lupus still sucks big time.  But today it sucks a little bit less.

I'm also enjoying my Christmas tree and lights.  My son worked all day yesterday putting everything up for me.  I did the ornaments little by little.  He still wants to put more lights outside.  I say, "More power to him!"

I'll include pics when everything is done.

Have a Blessed Day and Be Well,


Thursday, November 24, 2005

What I am thankful for.

Don't I look horrid.  Gary calls me racoon eyes.  You can see the remnants of the last lupus sore on my face.  I'm all blown up from being on prednisione.  How lovely.

I am having a very rough time.  It's just so difficult lately.  The pain is getting worse.  Shoulders, elbows, hands, hips, knees and feet all ache horribly.  The muscle pains and spasms are killers.  Then throw in the fatigue. I'm not going to go into the other stuff now. I am fortunate that I can walk from the couch to the kitchen without feeling as if I am going to pass out.  I try to avoid the stairs as much as possible.  Which is a difficult task considering I live in a high ranch type house.  The front door and laundry room are downstairs.  YIKES

It was all I could do to get Thanksgiving dinner on the table. 

I am so happy that we didn't invite company over. 

 I had to choose between getting the dinner ready or showering.  (Don't worry I showered last night before I went to bed.)

I am most thankful for my husband, Gary.  If it were not for him nothing would get done around here.  My children are a God send.  They do most of the chores.  Lauren takes care of most of them.  Gary, Jr. does the hard stuff.

I am particularly thankful that Gary will be starting a new job.  A new job that will afford us the luxury of having someone come in once or twice a month to take care of the heavy cleaning.

But I am so very grateful that my illness is not life threatening now.  Thank you Lord.

Wednesday, November 23, 2005



For every creature of God is good, and nothing to be refused, if it be received with thanksgiving.  1 Timothy 4:4

Happy Thanksgiving to all my beloved friends and family.




Monday, November 21, 2005

The Lord bless you and keep you; the Lord make his face to shine upon you, and be gracious to you; the Lord lift up his countenance upon you, and give you peace.

Numbers 6:24-26 (NRSV)

Monday, November 14, 2005


Good evening  readers. I have been lax regarding my journal lately.   Things here have been rough for me health wise. 

To explain what is going on would take a while.  Plus my hands are killing me so I wouldn't be able to do it anyway.

Let's just say that I feel like crap and leave it at that.

I had wanted my journal to be a documentation of my life living with lupus.  But, as any diehard lupie knows sometimes things just don't work out as we plan.

I ask that you keep me in your prayers and send gentle hugs my way.


Friday, November 11, 2005

I'm sick and tired of being sick and tired.

I need to go to bed now.  I have three lidocaine patches on my right leg.  I've taken "Big Gun" meds.  My chest hurts big time.  I can't walk from here to the kitchen without my chest getting tight, having palpations and becoming extremely dizzy.

And, now I have considerable pain underneath my left breast.

If you could describe your pain using a scale.  One being no pain and ten being the worst pain you have ever had.  How would you rate your pain?


Just so you know

I think it is, once again, time to educate others.  Mainly educate those who give ignorant responses after asking how you are.   


    Systemic Lupus Erythematosus (SLE, or lupus) is a chronic, incurable disease with four classifications:
* Autoimmune Disease
* Connective Tissue Disease
* Collagen Disease
* Inflammatory Disorder
    and all four are accurate.

As the lupus patient knows, this disease can affect virtually any -— and every part of the body: joints, muscles, organs, and entire body systems. SLE involvement ranges from mild to life-threatening; from slight fever, fatigue, and joint pain -— to disorders of the nervous system, blood and blood vessels -— to permanent organ damage, such as kidneys, lungs, heart, eyes, and gastrointestinal system.

In short, lupus is the result of an over-active immune system in which the body produces too many antibodies. These agents, designed to fight invading organisms (infection/virus) turn against the body and attack healthy cells and tissue, causing inflammation and ultimately, irreparable damage. Thus termed "auto-antibodies" meaning "against the self". The effects can be devastating, disabling, and even fatal.

Individuals with mild SLE find their symptoms are easily controlled, allowing them to continue a relatively normal life-style while experieing long periods of remission.

For those of us who suffer severe disease activity and organ involvement, our conditions may be regulated, but symptoms are rarely ever absent.

We live with constant pain, muscle weakness, disabling fatigue, frequent infections, and an endless variety of multi-system complications.

Most lupus patients also experience any number of secondary conditions, such as Asthma, Diabetes, Fibromyalgia, Sjogren's Syndrome, Raynaud's Phenomenon, Thyroid disease, CREST syndrome, and Anemia, to name a few. These conditions have over-lapping symptoms and it is often difficult or even impossible to know which disorder is responsible for the patient's current problems.

From............ Fatigue In Lupus

Around this time of year, when just about everyone is gearing up for the holidays, the severe, debilitating fatigue that plagues most lupies becomes one of our biggest liabilities. Who wants to go shopping, decorate or wrap gifts when you feel like overcooked spaghetti and frequently choose napping over bathing or eating?

The fatigue that most of us feel on a daily basis isn’t your run of the mill “Gee, I should turn in a little early tonight” sort of tired. It’s more of a “Five whole feet to the bathroom? I guess I can hold it a little longer” tired. Getting enough rest isn’t just difficult, it’s impossible. I call it having a “sleep tapeworm” – No matter how much you get, it isn’t going where you need it to!

Add to your daily fatigue: Holiday dinners, school pageants, shopping for gifts, putting up decorations, cooking, cleaning, keeping up with Christmas cards, late-night parties....Geez, I’m exhausted just thinking about it!

Fatigue in lupus isn’t something that we can just ignore, or shake off. It’s a warning from our bodies, telling us that we cannot keep going at this pace, and that we need to recharge ourselves. Being in a constant state of inflammation is draining in the extreme, and sucks up a lot of our energy without us really realizing it. Additionally, we don’t always get the quality rest that we need at night because of various symptoms and problems of lupus -- Restless leg syndrome, chronic joint pain, fever, Raynaud’s, the list goes on and on.

From............. Educating Ourselves and Others

Lupus is a disease that steals from you. It takes your strength, your self-esteem, your optimism and sometimes even your friends. It gives you pain, fatigue, rashes and fuzzy thinking in return.


I am learning to no longer worry about what other people think about my illness, but I can live with it. I try to surround myself with people who take me as I am, believe me and support me. And I laugh every day. Education and laughter. That is a wonderful prescription!


From......Lupus Mayo Clinic article


No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Even the distinctive rash that gives the disease its name — "lupus" is the Latin word for "wolf" because doctors once thought the rash resembled a wolf bite — doesn't occur in every case.

Most people with lupus have one thing in common, however, and that's the tendency of the disease to get decidedly worse in episodes called flares and then to improve or even disappear completely for a time.

I could go on and on this morning.  Because there are literally thousands (if not millions) of sources on the web designed to educate us about Lupus and other auto immune disorders.  Here a a few things that make me feel really bad.

When I have an upper respiratory infection, don't say to me.  Everyone gets those.  Yup, we Lupies are not a selected group of those who only get respiratory infections. Everyone doesn't feel like this.  And, everyone doesn't take weeks or months to get over it.

Don't tell me to go out, it's a beautiful day.  The sun is shining.  How many times does a person have to explain that for Lupies the sun is pretty much an enemy.

And, especially when someone with Lupus is experiencing horrid, acute pain.  Don't start talking about your pains.  It just belittles us.  That goes for when there are days (weeks or months) that we need to surrender to Lupus.  Those days it's usually the paralizing fatigue that has done us in.  So, don't say that you are tired too.  Lupus patients are not tired.  They are paralized by their fatigue.  There is a HUGE difference there.

Again, I could go on and on.  But the worst one for me is when you ask about how I am doing and then go on to talk about how you have a headache, your period, your tummy hurts.  You will get better.  We won't.  We live like this most of the time.

And, if a day comes that we are feeling somewhat fine.  I know, for me, (and I have heard other Lupies say the exact same thing) I go out, I do things, I try to take advantage of these days because they are so far and few inbetween.  But, I always end up paying for this.  I pay for it big time.

Oh and one more thing.  When talking to Lupies who are not working because of being sick.  Don't tell them that you would give anything in the world not to have to work.  We didn't wake up one day and decide not to go to work ever again.  That choice was made for us when our Lupus symptoms got a whole bunch worse.  We would give anything not to feel as we do and to be able to go to work again.

Just think twice when you speak.

Tuesday, November 1, 2005

Now I have it.

I received my Medicare card in the mail yesterday.  And, just as my approval for Social Security this was a bittersweet event.

It makes it all the more clearer that I am disabled.  That I am no longer capable of holding down a job.

I loved my job.  I was good, no excellent, at my job.  No one knew the policy and procedures concerning medical records like I did.  I was relied upon to make sure that everything ran smootly and that resident medical charts were complete and accurate.  And, when necessary the proper information was released according to HIPAA regulations.

Then one day I was wheeled out of my place of employment, put in an ambulance and rushed to the ER.  I was having a stroke.  That day was May 13, 2003.  The day before my 46th birthday.  Ever since that day my life has not been the same.

Gradually I started to have problems with my thought process.  I forgot important tasks at work.  I could no longer remember codes or read nurse's notes. My job started to become difficult for me.  For the first time in 8 years I was making mistakes.

Then I started to experience paralizing fatigue, excruciating pain and horrible skin rashes.  It all got to be too much for me.  And, I didn't want to put the nursing home in jeopardy.

I had to go on a medical leave of absence.  I stayed out for six months.  But within two or three weeks it became apparent that I could no longer function in the work place.

Now I have a Medicare card.

Now I write to keep myself sane.

Now I have all the time in the world.  I wished for more time.  Now I have it.