As I read Loretta's journal this morning, I sobbed.

Not for Loretta, for she has an astounding emotional ability to move on.

I cried for me.

I cried for the loss I feel.

I am unable to see the fix.

How long can I go on fighting.

Not for my life.

But for the battle in my life.

And, what a battle it is.

I long hopefully to win the battle.  Just once in a while.

Which one?  There are so many that plague my existence.

Lupus has declared war on me.

But, there are so many battles.

My chosen battle is PAIN.

The issue is that I am unable to gather the troops.  To bring them together so that they understand what I need.  (the troops being the medical community).

I thought I was winning this battle. 

Well, I believed that I had found my general.  He went by the name of PAIN MANAGEMENT MAN.

I am just a soldier in this battle.

But, my general has no foresight.  He lacks compassion.

I sat sobbing in the chair across from his desk on Friday.

He spoke saying that he did not understand how I could still be experiencing pain.

He went on tosaythat the med I am currently on is equivalent to like 40 vicadin daily.

I asked him what his point was.  He said that maybe my lupus is flaring.

I said..........Duh.

His look was priceless.  His remark not so.

This may be a rheumatological problem, contact your rheumatologist.

I calmly spoke through my tears. Every word thought out carefully.  Despite my anxiety at that moment.

The words were difficult to come.  But, I managed to remind him of the reason I first came to see him.

You are a pain management doctor.  I have pain. I first came here to have you manage my pain.  Not to be given the pain medication speech.

Friday's appointment was an emergency visit.  I was told to bring the rest of my fentanyl patches with me.  I knew the reason for this.  So, they could ensure that I was not an addict.

The next scheduled appointment is for Thursday.

He asked to see the patches I had left.  Of which I had three left.

Which is the exact number I should have left.  That rules out the addict theory. 

And, don't think  I didn't remind him of that.

Then he had an epiphany.  He looked at the patches and then said....

You have the wrong patches.

Apparently it goes this way.  There are three kinds of patches for the dose I am on.

The name brand.

Two generics.

One generic sucks.

The other works.

I had the one that sucked.

His attitude switched.  He knew what to do to help me.

He said you need the sanyo patch.

AMAZING!

I became so angry at him.  Maybe my anger should have been directed to my pharmacist.  But, it was towards PAIN MANAGEMENT MAN.

I said, I'm quite happy about this at least.  But, you should have asked about this prior to your previous belittling speech.

I was so upset at his minimizing attitude.  Do I look like a drug addict?

I reminded him of what occurred during our first visit.  That I had asked for pain site injections.  I had voiced my feelings on wearing 75 mcg of fentanyl on my arm.

That I was hopeful that he would be able to effectively manage my pain.  That when I call crying, it's not because I am looking for someone to decry my feelings.

So, I left there with two prescriptions.  Apparently, 75 mcg is hard to acquire.  Pharmacists have difficulty ordering them.  I left to fill one for 25 mcg and one for 50 mcg.  But, not without his comment that I may have to pay out of pocket for them since my current Rx still has 6 days left.

LOL

The new patches work better.  At least I am not crying out in pain with each movement.

Pain will ever be my companion.

I should get used to it.

But, when the pain is so horrid, it's a hard task to accomplish.

So, I still cry.

Have lost the battle this week.

Not the battle on pain itself, but the battle with SUPER PHYSICIAN MAN. (or all of my physician's).

 

LONELY

I'm depressed.

There is no doubt about it.

I have no energy or desire to do anything.

Why?  Can I blame it on Lupus?  I dunno.

Partly, I guess.

It's such a vicious circle living with a chronic debilitating illness.

I am so very lonely.

 

Conundrums

I'm tired.

I'm always tired.

I can't always sleep.

If I did that I would spend all my time sleeping.

There is more to life than sleeping, right?

If I don't get the sleep my body requires then I won't be capable of doing all the more to life stuff.

Don't you just love conundrums?

Good Morning!!!

I know that I haven't been writing much lately.

I've been having some major cognitive events.  It's weird because it comes and goes.  I feel like I can't put a thought together and then I am ok.

Strange.

My hips are still not better.  There is no more reddness, but boy do they hurt.  My knee, which wasn't as bad still hurts too.

My feet and calves are swollen again.  And, I am still taking Lasix!

On a better note, I am having a lot of fun maintaining my EBay store.  It's called OCCUPY MY TIME.  Here is the link http://stores.ebay.com/OCCUPY-MY-TIME_W0QQssPageNameZl2QQtZkm.

I just love it.  Check it out.  I sell all sorts of nifty things.  I'm adding new stuff all the time.

Well, that's it for now.

Hugs, Lu

TRY THIS

I FOUND THIS IN DAWN'S JOURNAL.  I WOULD SUPPLY THE LINK BUT I CAN'T GET THE LITTLE HEART TO APPEAR HERE WHEN I TRY TO MOVE IT.  OH WELL.  CHECK OUT THE SIDE OF MY JOURNAL FOR THE LINK TO HER JOURNAL.

Anyone else want to do it?  Just copy and paste and change to your answers.
---------------------------------------

I Am  a wife, mother, lover, friend, sister, daughter! 

I Want  to live according to God's will.  It's not so easy, but having faith helps! 

I Have  the best husband in the world! 

I Wish  I never met Lupus. 

I Hate  Lupus.

I Fear  not seeing my children married with children of their own.

I Hear  the television in the background.

I Search  for peace of mind. 

I Wonder  why some things happen. 

I Regret   Felice not wanting to be my friend anymore.

I Love  my husband and children so much.

I Ache  when someone I care about hurts. 

I Always try to do what is right.

I Usually  fall asleep on the couch.

I Am Not  a mean person.

I Dance  less than I would like to.

I Sing  even though I can't hold a tune at all.

I Never  lie. 

I Rarely  get out.

I Cry  a lot.

I Am  hoping to move to South Carolina within the next six years.

I'm Confused  a lot.

I Need  to stop smoking.

I Should  lose weight.

TODAY

I am feeling very crappie today.  My legs are really hurting.  I think it's because I really didn't sleep much.  I ended up falling a sleep on and off on the couch sitting up.

But, anyway I have some stuff that needs to be taken care of today.  Lauren and her boyfriend painted her room over the weekend.  She needs a new area rug, a new bed, a computer desk and some sort of small entertainment center for her television, stereo and all that nifty stuff.  She painted the walls and ceiling white.  Not a stark white.  It's called frost.  I hate white walls, any kind of white.  The majority of my house is painted a color called Navajo white.  It's a cream color.  She painted the trim in her room purple.  Yup, I said purple.  That's what she wanted, so that's what she got.  It needs another coat.  You know what happens when you paint a dark color over white.

I am sitting here waiting for the girls that clean my house to get here.  They should be here a little after nine.  Yes, I hired cleaning people.  It is the best thing I have ever done.  They take care of cleaning all the hard jobs.  The kitchen, bathroom. The floors and walls.  All the dusting and polishing.  They even do the inside of my microwave and change the sheets on my bed. Plus they do an excellent job.  Hiring them lets me use my energy for other things.  Fun things.

I still cannot do the food shopping thing.  Yesterday Lauren and I ran to the little supermarket to pick up stuff for dinner.  We were only in there for about 20 minutes.  I had such a difficult time walking back to the car.  Thank God she brought the packages in.  Tonight I am making chicken in my counter top convection oven.  I love cooking in that and my slow cooker.  Makes my life a lot easier.  And, I can set it on the table and sit in a chair while I prepare meals.

I'm thinking that my legs and feet are swollen.  I really can't tell if they are or not. I did the thing where you push down on a spot and see what happens.  Nothing happens.  But they feel so tight.  My feet look enormous.  I have big feetbut they are not wide.  To me, right now, they look so fat.  Oh well, I will see what happens.

Please have a blessed day my friends.

THANK YOU ALL

To all of you who left comments for my last journal entry, I want to thank you.  I hope you know how much those words meant to me.  Each one of you left me very inspirational and encouraging messages.

It's so true that only those who have experienced this kind of pain and fatigue can understand. 

Although, I need to include my Hubby here as well.  He has been so amazing during the last few years.  When I thank him, he tells me that "There is no reason to thank him.  He married me in sickness and in health.  It's his job to take care of me.  Plus he loves me and this is what you do when you love someone."

Between him, my children and all of you out there in cyberspace my mood has improved and I am no longer hitting myself on the head and blaming me for all that has happened to me.

Whoever said that you can never know a person you meet on the net was so wrong.  You guys (even those who were sent here by Dawn....thank you Sweetie) do know me.

I am very grateful for all of you.  Thank you so much!