Good Morning Friends!!

Yesterday's rheumi appointment did not produced positive results.  It appears as if he is leaving the practice.  I have been referred to another rheumi as well as a primary care physician.  I'm not that concerned as I really do not have any history with him anyway.   Also, while speaking with him I was informed that they do not monitor the INR of their patients on blood thinners.  We attempted to call the new doctors.  As far as the rheumi was concerned, their telephone was busy all day long.  I'm a tad leery about that.  Today I will contact the Lupus Foundation of Easley for a referral to another doctor.  We did get to speak to someone at the primary care doc's office.  I have to go in there first to pick up some paperwork.  I plan on doing that today.

I am probably going to do an Internet search for rheumis as well.

Yesterday my entire family took a road trip of sorts.  I attempted to keep up with them but the day was hot and extremely muggy.  My legs started to hurt a lot and I ended up feeling tense.  But I did keep up almost to the end.  It was a nice day and I was happy to be with my family.

Today we plan on doing nothing much.

Hugs, LuAnne

Sunday Morning

 

Today is a dreary day here in the Upstate.  It's going to be warm and muggy most of the week with scattered thunderstorms.  We keep hoping that one of these storms will send the humidity away but it keeps getting worse. 

Tomorrow I have an appointment with my new rheumi.  I met him in May when we were down here.  He seems fine.  Time will tell.  He has very big shoes to fill.  Not only was I used to Dr. Goldstein, but he was a great and understand MD.  I knew him.  But more importantly, he knew me.  It took years for us to develop that relationship.  I remember my first appointment with Dr. G.  I had just fired my first rheumi.  She was a good doctor but very overwhelmed and her staff sucked.  But as my conditions became more complicated I felt as if she wasn't stepping up to the plate.  I felt it was time for a new doctor.  So Dr. G. was recommended.  My first appointment with him lasted for over an hour.  He said that is how he handles new patients.  I had a zillion questions.  But it was my initial statement to him and how I viewed his reaction to it that would convince me if I wanted to stay with him.  I told him that I was an extremely proactive patient (I was at that time.)  That I was very involved in my care.  I said to him that I needed to be assured that he would be available to me when I needed him.  And, that because I saw many other specialists that he didn't have any problem working with them.  I also needed to make sure that his staff relayed messages to him in a timely manner.

The rest is history because I was with him for years.

This first appointment will be somewhat different.  As I am more comfortable withmy illnesses.  I no longer care (for lack of a better word) about what my blood work says. My position is to leave it up to the doctor.  If he sees something on my blood work that needs addressing that is up to him.  I no longer go to my appointments armed with lists and comments.  Therefore I am in and out in record time.

My concerns now are that I am as pain and fatigue free as relatively possible. We discuss how I have been doing.  He comments and makes suggestions and I accept his expertise.  I get a steroid shot or two and prescriptions for my meds and I am on my way.

This new rheumi is in a practice with an internist, pain management doc, a neurologist and I think a cardiologist. This makes everything that much easier.

My only concern for this appointment is how he plans on managing my Jantoven (blood thinner - generic coumadin) levels.  In NY I went to the anticoagulation center.  There are a few here but not in the immediate area.  A 15 - 20 minute drive.  I have the blood testing machine and a mediocre supply of testing strips here at home so I can test myself if need be.  But I need someone to call and report my numbers to.  I would prefer not to have to drive into Greenville for each testing. In NY I would go about every two weeks.  Sometimes three.  In the 5 years since I have been on anticoagulation meds I went a month without testing only a handful of times.  So having to drive into Greenville is the last thing I want to do.  I will see how he wants to handle this.  Maybe he will just want to send me for blood work monthly to check my levels.  I could test myself in between if need be.  Those test strips are very expensive and Medicare does not pay for them unless you have a mechanical heart valve.

That's another thing I have to think about.  I need to get some sort of Medicare HMO coverage.  Here in SC that insurance is called Humana.  I have been reading about it and so far so good. The doctor copays are $15 and $20 for specialists.  Prescription copays are $4 for generic and I think $15 for name brands.  That is great compared to what I had in NY through Gary's job.  Sometimes my Rx copays would be over $100 for one med.  The Humana website had an Rx search thingie and all but one of my meds was covered.  The methotrexate was not covered.  But, it did say that for that med the physician needed to preauthorize it.  But I am sure that this new doc is going to take me off of that and put me on some sort of infusion med.  We talked about that when I was there in May.

So all is good on the medical front.  I feel pretty good.  Today is two weeks since we arrived and I can honestly say that I had to slow down and rest only two days.  And, they were two separate days, not together.

My sister and her hubby arrived here last night.  They are staying with my brother.  We are going there to see them and have a huge family dinner late on.  I am very excited as I haven't seen my sister, Kathy, in quite some time.

This move has proved to be all that I expected.  I enjoy seeing my family all the time so much.  My doorbell rings and it's my Mom and I love it.  We haven't closed yet on the construction loan.  More on that in my other journal (check the sidebar of this journal for the link to So you think you want to build a house.)

Hugs, 

 

Good Morning.  Just a quick note about our move.  We arrived here in SC on Sunday, July 15 at about 4 PM.  We made the trip from NY in two days.  Staying overnight in Virginia.  The kids flew down from NY on Saturday, July 14.  My brother picked them up at the airport.  We are all doing well.  The kids already have job interviews set up for today.  Everyone is happy.  We already loved it here, so living here was a no brainier.  Plus, I am feeling pretty great.  Good enough to have finished all the unpacking.  Our furniture arrived here 6 days after we did.  Everything is in place.  The apartment is nice.  Somewhat smaller than the house we had in NY so some furniture and many boxes had to be put in a storage room we are renting.  Still waiting for a closing date.  Apparently they are waiting for the appraisal.  Which I don't quite understand because there is nothing there.  It's just a plot of land.  Oh well.

Here is a meme I stole from Dawn at http://journals.aol.com/princesssaurora/CarpeDiem/

I Live: Easley, South Carolina now.

I Work: Not outside the house as I am disabled due to my illnesses.

I Talk: to anyone and everyone!

I Wish: for way too many things.

I Enjoy: that first cup of coffee in the morning.  I am a coffee snob as I really only enjoy my own coffee.  Although I do love Starbucks, McDonald's and diner coffee.

I Look: with the eyes of a child.

I Find:  the good in most people.  Or at least I try.

I Smell:  a carmel Old Virginia Wood Wick candle that is burning on top of my entertainment unit right now.

I Listen:  when I am not stressed.  Then I seem to lose that ability

I Hide:  nothing

I Pray:  too little

I Write:  everything down or I seem to forget it. (Dawn I stole this one from you.)

I See:  a lot and a little

I Sing:  along with songs I like.  Even though I have the most horrendous singing voice and CANNOT hold a tune.

I Laugh:  a lot

I Can:  therefore I do

I Watch: All of the CSI shows, all the Law and Orders, Charmed, Angel, Big Love, Dexter, Project Runway, America's Next Top Model and those new karaoke shows on TV.

I Yearn:  for it to be this time next year.  Yeah, yeah I know not to wish (or in this case yearn) my life away.  But, I just want this house started and completed already.

I Daydream: a lot

I Fall:  all the time.  I am very uncoordinated.

I Want:  to win the lottery.  (he he don't we all?) (Another I stole from Dawn)

I Cry:  haven't in a while.

I Burn:  even if I am out in the sun for 10 minutes.  Goes along with the Lupus and the reactions some of the meds I take.

I Read:  not as much as I want.  Ever since I got sick I cannot read as well as I used to.  Oh I know how to, just can't seem to concentrate long enough to read more than one or two sentences.

I Love:  My husband sooooooooo much.

I Rode:  in a car yesterday, LOL

I Sometimes:  want scream really loud.

I Hurt:  physically more than the next person.

I Fear:  not much

I Hope:  that I am living my life with morals and raising my children right.

I Break:  way too many things.

I Eat:  not as much as I used to.

I Bathe: I'm a shower gal.  Although, lately I have been soaking in the tub because it helps with the inflammation.

I Drink:  COFFEE, diet green tea, sweat tea (hey I'm a Southerner now) and lately water. 

I Stop:  and crash

I Save:  nah

I Hug:  and love to be hugged.

I Meditate:  nope, more like pray

I Play:  no instruments.  Although, I used to be able to play Beethoven's Fifth on the piano with my right hand.

I Miss: my father and my grandparents.  Friends that couldn't handle me being ill.  Sorry, but I don't miss New York one bit.

I Hold: onto my hubby so much lately.  I couldn't survive life without him.

I Forgive:  without being asked. 

I Drive:  everyone crazy

I Learned:  not to sweat the small stuff.  I don't always do it, but I try.

I Dream:  vividly.

I Have:  the best family and life in the world.

I Don't:  think worrying about anything helps.  The time spent worrying is time you lose from your life.  What is going to happen is going to happen.

I Made:  or make a great gravy.  For those of you who don't know what I mean .... Italian's all tomato sauce with lots of meat..... gravy.

I Believe: that Jesus died for my sins.  And, that if I were the only person on earth, he still would have died for me.

I Wait:  way too much.  Gary says I have no patience.

I Need:  get my eyes checked.

I Owe:  a lot to my mother.  She is pretty amazing.

I Hate:  prejudice.

I Feel:  pretty good.

I Know:  my husband loves me and I love him back.

I Wonder:  what tomorrow will bring.

I Applaud:  anyone who cares for the elderly and infirm.

I Love: intensely.

Tags: Easley, SC, Lupus,

Good Morning

My daughter, Lauren, is sick with a bad head cold and her eyes are red and weepy.  I suspect she has a sinus infection and they are draining out through her eyes.  I had that a few weeks back.  Yesterday I put some left over drops I had from when I had it in her eyes.  But today I will take her to the doctor to get checked out.  My poor baby is so miserable.

It's amazing and I am very excited.  I do believe that I am over this flare.  I have been feeling horrible since I had my left inguinal hernia repair about three years ago.  During that time I might have had a day or two here and there where I felt okay, but always ended up feeling worse after that.  But now this great feeling has been going on for a few weeks now.  The only time I feel crappie is the day after I take my methotrexate.  I take it on Saturday evening and always the next day I am wiped out and my stomach spasms (with all that nifty stuff that goes along with belly spasms.)

Even with my terrible sleep hygiene, I still feel good.  I've tried everything I can to correct this problem, but nothing is working.  I have no problem falling asleep.  It's staying asleep that is the problem.  I even got a Rx from my doc.  He gave me Ambien.  I take it when I get up during the night.  It's usually around 11 or midnight.  But it does nothing for me.  An Advil PM works better.  But not great.

I'm also weaning off of my pain medication.  I wear what is called Fentanyl Duragesic patches.  I was on 125 mcgs now I'm down to 50.  Also, I haven't needed to take my big gun meds in quite a while.  I take 200 mgs of Celebrex in the AM then again in the PM and that seems to work well.

I was afraid that with this move, new doctors wouldn't be so agreeable to prescribing such strong narcotic pain meds.  I was afraid that if that happened I would end up without the meds and go into withdrawal.  I tried to stop the pain meds a little while ago and did it incorrectly and ended up being admitted to the hospital with withdrawal symptoms.  At that time they educated me about how to do it correctly. A pain management specialist came to see me and gave me a detailed explanation of how to wean off such strong narcotic/opiate meds.  So I followed his instructions and am doing great.

Although my right foot has been really very painful.  Gary and I went to see our podiatrist friend and he gave me two cortisone injections and the pain is minimal now.  I just love this doctor.  He has been our podiatrist for many years and we are worried that we won't find anyone as wonderful as he is down in SC.

As far as how I feel is concerned, I don't know if it's my adrenaline that is on overdrive making me feel great or the continued use of prednisione or just the end of a very long flare.  What ever it is, I am happy.

As far as the continued prednisione is concerned, I am not at all happy about having to take anywhere from 15 to 20 mgs daily.  I went to my yearly GYN appointment and my doctor suggested a DEXA (bone density) exam.  For which I am going to this morning.  My hips have been giving me problems.  I should have the results before we leave for SC.

My doctors copied my medical records and I will be bring them with me.  I have already seen a rheumatologist in Easley so that is taken care of.  In that practice is the rheumi, a neurologist, an internist and a pain management doc.  Those are who I see on a regular basis.  As far as those yearly visits to the Gyn, Cardiologist, Endocrinologist, etc.  I will have this rheumi recommend docs he knows.

Well, that's it for now.  Except we only have 9 more days until the big move.  To read all about our move to SC check out my other journal.  Look for it on the sidebar under Other Journals.

IT'S BEEN A WHILE

Good Morning!

It's been almost a month since I last wrote an entry in this journal.  I have been so busy preparing for our move to Easley, SC .  We are moving on Juloy 14th.

Also, I have been neglectful in commenting on other's journals.  Please forgive me.

On June  7th I was sitting in my doctor's waiting room when I started to feel my face and upper body on the left side begin to feel tight , get tingly and go numb.  I got the attention of his receptionist and she called him out to check on me.  He had just finished with his patient and took me in his office.  He examined me and suspected that I was having another TIA so he sent me right over to the ER.  I panicked and ended up driving.  Stupid I know.  At the ER they took tests (blood, X-ray, CAT scan.)  It was determined that my coumadin level was too low.  it was 1.9. A therapeutic range for someone with APS is 3 to 3.5 so I was admitted for observation and stroke watch.  I was hooked up to a heparin IV as a precaution and my coumadin (I take the generic form called Jantoven) was increased.

Needless to say I was not happy about being in the hospital.  I just wanted to go home and I made everyone there aware of that fact.  I was not a very good patient.  But I knew that I needed to stay so I calmed down.  Plus they gave me something to relax me.  Which it did very well.

 

             

Now when I get admitted to the hospital I tell Gary to stay at work.  It's not necessary for him to come hold my hand.  It's fine that he comes after work.  In the beginning when I got sick he would always leave work.  It got to the point that sometimes I would be in the hospital two times a month.  He always wants to leave work but now I make him wait until he gets off.

           

I only ended up staying overnight.  Although early Friday morning I started to have some visual problems so the hospital attending doctor (they call them hospitalists now) had to be called.  I heard them over the loudspeaker calling him STAT to my room.  The visual disturbance only lasted an hour or so.  They saw no cause to worry.  But, (as those of you who are familiar with being in the hospital know) they come to draw blood a few times during the day.  The Hospitalist returned to my room to tell me that my H and H was off and they suspected internal bleeding somewhere.  The tech returned to take even more blood.  My counts were returning to normal.  But they wanted one more blood draw before they discharged me.  It came back fine and I was released at 6:00 PM. 

                            

 I was very happy to get home. 

I'm asking all of my readers to pray for Dawn of  http://journals.aol.com/princesssaurora/CarpeDiem/

Dawn has some serious health issues.  Please visit her journal and offer support.

Thank you!

Shayner

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 Lupus.  Shayner 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.

LuAnne

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.