Thursday, May 17, 2007


Throughout the past few months Lupus has taken four of our friends.  These wonderful woman Valray, Melissa, Kat and Shayner were powerful forces on the Lupus Discussion Board.

They were already there when I, a frightened, newly diagnosed Lupie ventured online to find answers to this mysterious illness I was diagnosed with.  These women had amazing guidance and love for all of us, not only the newly diagnosed.

I remember the me from five years ago.  Lurking on the board.  Afraid and unable to put my fears into perspective.  Shayner took me under her wing and slowly taught me the facts of LupusShayner never made light of what a horrible illness Lupus was.  But she had a way of comforting me and averting my fears and misunderstanding.  Shayner never failed to remind me that I was a strong woman.  And, when I became severely depressed and attempted to take my own life, she became angry at me.  Telling me how valuable I was.  Reminding me that my life meant something.  Shayner was one of the few who was responsible for bringing me out of that pit.  And, for that I will be ever grateful.

During any of my many crisis, she took my hand and my heart and gently guided me to peace.  In part Shayner was responsible for my growth during the last five years since my diagnosis.  If not for her I believe I would still be a scared, frightened Lupie.

Now through my tears I can hear her voice.  I can hear her telling me that the tales of her youth.  She was ill for so long.  Unlike me, Shayner was diagnosed at a young age.  She was a sickly child and carried the Lupus burden with her for many of her years here on earth.  But, she lived her life to the fullest. 

When I told Shayner that Gary and I were going to build our own home in Easley, South Carolina she was happy for me. 

She was loved.  Not only by her husband, George.  But by many of us.  Especially me.

My friend you are so missed.  There are no words that could convey the emptiness your death has left in my life.  I am being selfish, yes I know.  I wanted you around forever.  But God chose to bring you home to him. Your time on earth was finished.  You are now in heaven watching over me.  Your influence will always be with me.  Your advice and guidance will remain with me forever.  Thank you so much for that.

Through my sorrow, your life is being celebrated.  You will be greatly missed.  Rest in peace my dear friend!

I love you dearly.


Thursday, May 10, 2007

The past few days

Those of you who have pre grown up children will understand this entry.  Those of you who don't should try to store some of it in the back of your mind.

I can't remember if I wrote about my son's girlfriend Jacklyn living with us now.  She will  be moving with us to South Carolina.  Jacklyn is a lovely girl.  I am thrilled that my son has chosen her or should I say that they have chosen each other.

But, our home has become a little crowded.  It's a nice crowded, but crowded just the same.

So, alone time for my hubby and me is at a minimum.  That is why we try to schedule a few hours out of the house each week.  This alone time depends upon a few factors.  Mainly how I am feeling.  But also upon whether or not he has to work on the weekend.

It worked out this weekend.  He didn't have to work and I was feeling pretty good.  Ever since I had my molar extracted which was an experience in itself.  The tooth was so cracked that it ripped up my tongue.  And, because of my being on methotrexate and prednisione that didn't heal.  It became infected and traveled down my throat.  All this even before the stupid tooth being pulled out.

The surgery itself went well.  There was worry that I would hemorrhage because of being on blood thinners.  There was minimal bleeding.  But, as with most of us Lupies any trauma to our bodies can bring on a flare.  Aside from the usual flare indicators, my spine started to become uncooperative.  My legs went into spasms.  The pain was excruitiating.  Nothing I had in my arsenal of big gun meds would even tough the pain.  I ended up on .4 mg (or was it just 4) of dilaudid.  Which did the trick.  The oral surgeon had given me a small amount of them after I explained my usual pain protocol to him.  He gave me ten pills.  I rationed them the best I could.  Took my last one Friday evening.

Gary suggested that I speak to my primary care physician and ask him for a prescription of them.  I am hopeful that he will give them to me.  Because we all (especially him) knows what happens to my body when I start to hurt that way.  One pill does wonders.

Thursday, May 10, 2007

Yesterday I ended up in the ER once again.  As you know I have been having major pain in my lower back and entire right leg.  Well, Wednesday morning I woke up and could not put any weight on my leg.  The pain was unbearable.  The pain was there all the time but if I tried to put any weight on that leg I got shooting electrical shocks up and down my leg.  So there I sat in my bed trying to figure out what to do.  I ended up beeping Lauren's cordless phone.  She woke up and got me my meds.  I took my "BIG GUN" pain meds and sat there waiting for them to kick in.  No such luck.  The pain seemed to be getting worse.  But, at one point it appared to go away.  I thanked God.  But no sooner had I got done thanking Him, I lost all feeling in the leg from hip to toe including my pelvic region.  It became evident that something was not right and I needed to be seen by someone.  My dilemna was what to do.  I called my primary care physician.  He wasn't in the office yet so I got his service.  Who said they would contact him.  They claimed to anyway. I waited two hours for his phone call and it never came.  I called back and they told me that they would give him the message as soon as the office staff was in.  Apparently, the answering service operator (with her medical degree and vast clinical skills) decided that my leg was not emergency enough to contact him.  Lauren and I decided to call an ambulance and I was taken to the ER.

There they did no tests.  Nothing.  But, wanted to make me as pain free as possible.  Which they did.  There explanation for the numbness was that my leg was not really numb.  That it must be muscle spasms or something. At least they managed my pain successfully.

Gary took off from work today to drive me to my primary care physician.  He told me something I didn't know NOT after rereading my last spinal MRI.  That my lumbar spine was a mess with herniated discs. That there was no cushioning between the discs anymore.  I really have no options except pain management.  Epidural injections into the spine is the treatment of choice for something like this.  We agreed that because I am on blood thinners this wasn't a good idea.  There is a high risk of bleeding which could lead to paralysis.  I'm not going to take that chance.  Plus there is no guarantee that it will work. 

He talked to me about maybe inserting a TENS unit.  I haven't thought about this before and will be doing some research about it. (What is TENS? TENS (Transcutaneous Electrical Nerve Stimulation) is a highly effective treatment for pain using electrical pulses.  How does a TENS unit work?  Pads are placed on or near the area of pain. Soothing pulses are sent via the pads through the skin and along the nerve fibres. The pulses suppress pain signals to the brain. TENS also encourages the body to produce higher levels of its own natural pain killing chemicals called Endorphins and Encephalographic.)

I may consider it.

He wrote me the prescription for dilaudid.  He gave me 20 4 mg pills.  Which is perfect.  I only need a 2 mg pill when I get such severe pain.

He was concerned because my rheumatologist keeps cutting down my prednisine to 5 mg and every time he tries to cut me down my pain level increases dramatically.  He thinks I need to be on at least 10 mg daily.  (I've written about his before and the damage prednisione can do.)

We leave for a two week vacation to South Carolina on Saturday morning.  We have a lot to do there before we permanently move.  I will try to up date my other journal on the progress we make while down there.

I am feeling so much better.  Oh I still have pain but it is not as intense as it was.

I want to wish you all a Blessed Mother's Day.  We will be down in SC for Mother's Day.  It will be nice spending that day with Mom. 

It's also my 50th birthday on the 14th.  I cannot believe that I am turning 50.  I am not depressed or upset about it.  Just stunned.  Whey they say time flies when you are having fun, they are so right.

I have a good life with my wonderful husband.  He was just diagnosed with high blood pressure and put on a blood pressure pill.  I have to write this again.  He puts his needs and wants aside just to make sure mine are met.  I couldn't have a more loving, romantic, wonderful, selfless and amazing husband.

Well, it's time to go to bed.  Sleep tight everyone.