Sunday, September 3, 2006

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).

 

12 comments:

Anonymous said...

Luanne,
Sorry to hear about your pain problems - it's one thing having to fight such a battle, it's quite another being handed a gun that only fires blanks. I don't understand how a dud generic fentanyl patch is allowed on the market (FDA???). Anyway, won't bore you with that. Keep your head high!

Anonymous said...

i am sorry the pain guy was a jerk! hopefully you wil feel better soon

Deb

Anonymous said...

Wow.  Luanne.  I am totally feeling you here.  I mean the pain I was sitting in the chair with you.  I was listening to PAIN MANAGEMENT MAN talk to you as if you were crazy or something.  I know that feeling.  I was just in the hospital on Saturday at which time MISTER EMERGENCY ROOM MAN told me that I was having a flare.  I just like you thought let me see here my knees are swollen and I can barely bend them.  My hands look like baseball bats a flare?  Wow.  Who would have thought.  We are in a battle which is so true.  The thing that even on the bad things we have to be grateful for something.  I know that because if I didn't find things to be grateful even through the battles I would be dead.  No question in my book.  Between the lupus and all the other conditions WHEW!  That's all that I will say about that.  I will tell you that I will be praying for you because I will.  Extra sensitive hugs through your pain.

Anonymous said...

Lu dear, I am sobbing along with you.  I am just dumbfounded and horrified that you'd be given pain patches that the doc knows do not work and then the doc wonders why you are in pain.  I am rejoicing that you now at least do have proper pain patches and pray that they will be effective for you.  Thank God you stood up for yourself when your doc failed you.
loving you
karyl

Anonymous said...

OMG... Lu, HOW AWFUL!!!   DAMN FREAKING DOCS!!!!!!!   UGH!!!   I am so angry for you... and I guess for me and all of us.  We are warriors against the daily assault of these damn diseases... we don't need to deal with this shit from the docs.  

Oh honey, you are in my prayers as always.  I am sorry it took me so long to get here... my life is crazy with the kids right now, they aren't going back to school yet due to construction delays... ugh, but that shouldn't stop me from getting here to let you know how much I love you.

hang on honey...

be well,
Dawn

Anonymous said...

Oh, Lu............ You know my thoughts on doctors. I would like to give them all lupus and the like just for a day so they can see what it's like. So they can know what we live with everyday. We don't need their attitudes on top of the pain, hurt, sick, tired, drained, issues we live with daily. (That made no sense, but you know what I mean!)

I have a doctor's appointment tomorrow and I'm dreading it. The last apt did not go well and I don't want to go back.

Anyway, I hope today is a better day for you.

Love ya,
Susan

Anonymous said...

Lu, sometimes I think pain doctors get more caught in the addiction issue than one's pain issues. I am so sorry your doc was demeaning to you neuropathy himself, and boy, and I wonder if he has ever experienced chronic pain himself. I went to several pain clinics before I found a doc who actually struggles with my issues-peripheral and autonomic neuropathy. What a difference! I am proud of you that you stoood up for yourself, too. None of this is easy. Margo

Anonymous said...

I do hope the meds are working for you now...I have been in such pain that I throw up...I kid you not...and my man looks at me like i am crazy...they only give me lower tabs and they make me soooo sick...i tried one the night before thinking maybe it would help...but they do nothing for the pain and I lay in the floor wishing for death!!!!  Hugs to you my friend and know I am always thinking about you and praying for you...TerryAnn

Anonymous said...

(((((LU)))))
I wish I had been at that appointment with you so I could have kicked the doctor in the tuckus.
It hurts just to read this because I know your suffering is profound.
And the blame game that our doctors play with us is humiliating.
My heart is with you, sweety.
Love,
Loretta

Anonymous said...

I have lived with a VERY close relative with Lupus. I have Chronic pain for other reasons,but I can understand what you are going through. I was 16 when they diagnosed my sister (technically Aunt but more my sister). They told her she had about 15 years to live. I will be 46 in October and she is still here fighting the Lupus! I know sometimes the pain is so bad you thing of the unthinkable but don't give up! My sister has made it 2X as long as they gave her in the beginning. I know it's hard!! But don't let it take over!!!
Bless you
Dell

Anonymous said...

STOPPING BY TO CHECK ON YOU FRIEND...KEEPING YOU IN  MY PRAYERS!!! (((HUGS))) TERRYANN

Anonymous said...

I hope you are keeping well Lu-Anne, or as well as can be. Looking forward to an entry, whenever you can manage

http://journals.aol.co.uk/pharmolo/NorthernTrip